Early Intervention for Deaf and

Hard-of-Hearing Infants, Toddlers,

and Their Families
PROFESSIONAL PERSPECTIVES ON DEAFNESS: EVIDENCE AND APPLICATIONS

Series Editors
Patricia Elizabeth Spencer

Marc Marschark

Social Competence of Deaf and Hard-of-Hearing Children

Shirin D. Antia and Kathryn H. Kreimeyer

Mental Health and Deafness

Margaret du Feu and Cathy Chovaz

Auditory (Re)Habilitation for Adolescents with Hearing Loss

Jill Duncan, Ellen A. Rhoades, and Elizabeth Fitzpatrick

Literacy Instruction for Students Who Are Deaf and Hard of Hearing
Susan R. Easterbrooks and Jennifer Beal-Alvarez

Introduction to American Deaf Culture

Thomas K. Holcomb

Early Intervention for Deaf and Hard-of-Hearing Infants, Toddlers, and Their
Families: Interdisciplinary Perspectives
Marilyn Sass-Lehrer

Evidence-Based Practice in Educating Deaf and Hard-of-Hearing Students

Patricia Elizabeth Spencer and Marc Marschark
Early Intervention for Deaf
and Hard-of-Hearing Infants,
Toddlers, and Their Families
Interdisciplinary Perspectives

EDITED BY MARILYN SASS-LEHRER

1
1
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Library of Congress Cataloging-in-Publication Data

Early intervention for deaf and hard-of-hearing infants, toddlers and their families :
interdisciplinary perspectives / edited by Marilyn Sass-Lehrer.
pages cm. — (Professional perspectives on deafness: evidence and applications)
Includes bibliographical references and index.
ISBN 978–0–19–995774–3
1.  Deaf children—Services for.  2.  Hearing impaired children—Services for. 
3.  Deaf children—Education.  4.  Hearing impaired children—Education. 
5.  Hearing disorders in children—Diagnosis.  6.  Hearing disorders in infants—Diagnosis.
I.  Sass-Lehrer, Marilyn, 1948-
HV2391.E266 2016
362.4′20832—dc23

9 8  7 6 5 4 3 2 1
Printed in the United States of America
on acid-free paper
To the many outstanding professionals all around the world devoted to
providing infants and toddlers who are deaf or hard of hearing and their
families with the tools necessary for a great start.
 CONTENTS

Foreword  ix
Manfred Hintermair

Preface  xv
Marilyn Sass-Lehrer

Contributors  xxiii

PART I  EARLY INTERVENTION FOUNDATIONS

1. What Every Early Intervention Professional Should Know  3
Marilyn Sass-Lehrer, Mary Pat Moeller, and Arlene Stredler-Brown

2. Developing and Sustaining Exemplary Practice

Through Professional Learning  37
Mary Ellen Nevins and Marilyn Sass-Lehrer

3. Families: Partnerships in Practice  65
Marilyn Sass-Lehrer, Ann Porter, and Cheryl L. Wu

4. Legislation, Policies, and the Role of Research

in Shaping Early Intervention  105
Barbara Raimondo and Christine Yoshinaga-Itano

5. Collaboration with Deaf and Hard-of-Hearing

Communities  135
Paula Pittman, Beth S. Benedict, Stephanie Olson,
and Marilyn Sass-Lehrer

vii
viii  Contents

PART II  EARLY INTERVENTION PRACTICES

6. Getting Started: Hearing Screening, Evaluation, and
Next Steps  169
Rachel St. John, Linda Lytle, Debra Nussbaum, and Angela Shoup

7. Developmental Assessment  199

Amy Szarkowski and Nicole Hutchinson

8. Collaboration for Communication, Language, and

Cognitive Development  233
Maribel Gárate and Susan Lenihan

9. Individualized Family Service Plans and Programming  275

Rosemary Gallegos, Kristi Halus, and Jodee Crace

10. Early Intervention in Challenging National Contexts  305

Claudine Störbeck and Alys Young

Index  329
 FOREWORD

WORKING WITH FAMILIES OF DEAF AND HARD-OF-HEARING

INFANTS AND TODDLERS: IS IT A SMOOTH DANCING EXPERIENCE?

The readers of this book may ask themselves what early intervention for
deaf and hard-of-hearing infants, toddlers, and their families may have
to do with dancing. Before I  come back to this question, I  have some
thoughts at the outset that I would like to share.
This book is a “must-have” for every professional who is working with
families of deaf and hard-of-hearing infants and toddlers, as well as for
students who plan to work in this field. This book may also be of inter-
est to families who want to know what they can expect when an early
intervention provider is knocking on their door after the confirmation
that their child is deaf. Whoever reads this book is offered a masterpiece
of ideas regarding challenges and opportunities in early intervention.
The principles described in this book are based on a comprehensive sur-
vey of recent empirical data and on a strong foundation of the practical

ix
x  Foreword

expertise of the contributors to this book (hearing professionals, deaf

professionals, and parents). The integrative combination of theory and
practice makes this book especially valuable.
When Marilyn Sass-Lehrer invited me to write a foreword for this
book, I was, at first, somewhat reluctant. As we are all busy people, I was
doubtful that I would find time in my tight schedule to do this job. Today,
I am so happy that I accepted this invitation. My initial plan was to read
one chapter at a time when I had a moment between my other engage-
ments. But things happened in a very different way. After I read the first
chapter I could not stop, and so I finished my reading of the whole book
the evening after I started it! I even gave a copy of the book manuscript
to a German mother of a deaf child who I have known for many years.
After reading the book, she told me that this was the information she was
looking for when her deaf child was identified as being deaf many years
ago. She then asked if it would be possible to write something similar for
early intervention in Germany.
Now back to the dance analogy. I found a citation in a book I have that
also concerns families of young children with special needs (McWilliam,
2010a). One mother describes a situation far too familiar to many fami-
lies who have just received confirmation of a “disability” for their child.
It is often not easy for parents to immediately engage in collaborative
relationships with professionals. This mother compared her situation to
an invitation to a dance, in which one of the dance partners may be very
unsure if he or she is willing to dance:

Here you are, the professional, eagerly awaiting your new dance
partner. Your arms are stretched out inviting us, parents, to enter
your world. . . . We, as parents, having not chosen this dance, are
usually not as eager to join you. We may approach you not with
open arms but with tightly folded ones clutched to our chest. …
We may feel reluctant, ambivalent, and often unwilling. For one
thing, if we choose to join you, we have to acknowledge that our
child has special needs. We have to acknowledge that we are enter-
ing your world—one that is initially unfamiliar and frightening.
 Foreword  xi

Entering into our partnerships with you demands that we let go

of our dreams and begin to build new ones. (Fialka, 2001, p. 22)

Professionals who read this book (and who follow its pivotal guidelines)
will be well prepared to encourage families of children who are deaf or hard
of hearing to build new dreams! The focus on an intensive collaboration
of professionals and families, and of professionals with each other—one
of the core concepts of this book, helps parents and professionals find a
way to share a common language and to be on the same page:

Priorities for parents and professionals often differ. It is as if we

each have on our own set of headphones and are listening to our
own music, with its own tune, words, and rhythm. There’s the
mother song, the father song, the speech pathologist song, the
neurologist song, and the teacher song. Sometimes the only song
we can momentarily agree on is “Hit the road Jack, and don’t you
come back no more!” (Fialka, 2001, p. 26)

After learning that their child is deaf, parents often feel confused about
their roles and competence: “Do I have to teach him or her language? If
so, how will I do that? I know nothing about what it means to be deaf.
Do I have the strength to cope with this new situation?” If professionals
want parents to accept their dance invitation and collaborate with them,
they have to be able to develop relationships with families and their chil-
dren, have excellent communication skills, and know how to be a good
dance partner. As stated in the preface of this book, it is also essential for
professionals to understand people who are deaf and hard of hearing.
Professionals, both hearing and deaf, need to understand Deaf and
Hard-of-Hearing communities and understand the varying perspectives
and experiences on being deaf in a predominantly hearing world.
Readers of this book will be provided with much theoretical and prac-
tical information at a hitherto unprecedented level of expertise and detail.
We learn that for children who are deaf or hard of hearing early access
to language (regardless of which language modality is used) is essential
and must be supported by parents (and other members of the family)
who learn to communicate sensitively and responsively with their child.
xii  Foreword

Implementing this has implications for the supportive manner in which

professionals serve families and requires early intervention providers to
make internal and external resources available to the families.
McWilliam (2010b, p. 2) described the values necessary to provide ef-
fective early intervention: The first value he addresses is providing serv-
ices to children and families in the context of everyday routines rather
than in sessions; the second value includes working with families in a
family-friendly manner rather than instructing them on what to do with
their (deaf or hard-of-hearing) child; and the third value discusses the
importance of concentrating on family quality of life not only on child
competence.
Five practices are necessary, according to McWilliam (2010b), to im-
plement these values into the everyday life of families. These practices are
“assessing informal and formal supports, assessing functional needs in
everyday situations, coordinating services, using home visits to provide
support, and consulting collaboratively with child care providers” (p. 2).
Behind these practices are some very simple, but very important, key
principles of a family-centered philosophy of early intervention for fami-
lies with deaf or hard-of-hearing infants and toddlers (McWilliam, 2010c,
p. 208). We must note that it is the family that has the most powerful in-
fluence on the child, and that professionals can only indirectly influence
the family. Furthermore, children learn throughout the day, and so early
intervention cannot be limited to weekly sessions (in which the parents
observe how the professional “works” with the child and then later try
to imitate the interactions with their child). The real intervention takes
place between visits and so professionals have to give families the support
and guidance they need to help them manage and make the most of any
opportunities they have to interact with their child during the week. This
short digression into the work of McWilliam has been necessary to re-
mind the reader of this book that there is a multitude of support to fulfill
the expectations of family-centered early intervention!
A foreword is not the place to discuss the various chapters of the
book, so instead, I encourage the reader to appreciate on their own the
value of each of the chapters! Perhaps I could sum this up by saying that
I got caught up by the core messages that emerge from each of the book
 Foreword  xiii

chapters. The authors make clear the underlying empowerment philoso-

phy expressed in the wording of many passages:  Family-oriented early
intervention is a process that encourages the parents of a child who is
deaf or hard of hearing to take their affairs into their own hands. They
encourage parents and other caregivers to discover their own strengths
and competencies and to take these seriously; and they support and en-
courage parents to appreciate the value of solutions they have worked
out on their own (Hintermair, 2014). Professionals, from an empower-
ment philosophy, try to work together with parents on a level playing
field. I have found many passages in this book in which this attitude of
respect for the face-to-face experience with parents can be perceived
and felt. For example, in Chapter 3 the authors stress that it is important
to establish a partnership with parents that reflects sharing power with
the family and not power over the family as this would be the case in a
professional-as-expert model. The authors make clear why a “one size fits
all” does not work, and why each family needs to find the way that will
best suit their child and family. I  also like the arguments made by the
authors in Chapter 6 that assuming a universal “timeline of readiness” for
every family is an unrealistic perspective for working with families with
children who are deaf or hard of hearing. Families are different, and need
professionals who will discover through dialog what suits them best at
different points along their way as they learn how to cope with their situ-
ations. Finally, I appreciate the importance of the message that families
should not lose sight of outcomes beyond language, including aspects
such as a sound self-esteem or good social relationships with peers, or
complex thoughts and ideas.
I have to stop at this place. But I can promise the readers of this book
that they will find innumerable examples similar to the few singled out
by me. All arguments by the authors in this book support a holistic
family-centered perspective on deaf education. I  will conclude with a
statement by Irene Leigh (2009). In her seminal book on deaf identities
she has written that after an intensive examination of the available mate-
rial on this topic it is as clear as day for her that there are many ways to be
Deaf, deaf, or hard of hearing. To create and to nurture this rich diversity
starts in early intervention. Therefore, I wish that many people will read
xiv  Foreword

this book; they will learn a lot about diversity and, in particular, they will
learn to view diversity as something very positive. Nothing better could
happen for deaf education!
Manfred Hintermair
Heidelberg, May 1st, 2015

REFERENCES
Fialka, J. (2001). The dance of partnership:  Why do my feet hurt? Young
Exceptional Children, 4, 21–27.
Hintermair, M. (2014). Psychosocial development of deaf and hard of hearing
children in the 21th century. Opportunities and challenges. In G. Tang, H.
Knoors, & M. Marschark (Eds.), Bilingualism and bilingual deaf education
(pp. 152–185). New York, NY: Oxford University Press.
Leigh, I. (2009). A lens on deaf identities. New York, NY: Oxford University Press.
McWilliam, R.  A. (Ed.) (2010a). Working with families of young children with
special needs. New York, NY: The Guilford Press.
McWilliam, R. A. (2010b). Introduction. In R. A. McWilliam (Ed.), Working with
families of young children with special needs (pp. 1–7). New York, NY: The
Guilford Press.
McWilliam, R.  A. (2010c). Support-based home visiting. In R. A.  McWilliam
(Ed.), Working with families of young children with special needs (pp.
203–230). New York, NY: The Guilford Press.
 P R E FA C E

This book explores, among other things, the complexity of per-

spectives that families and professionals bring to early intervention for
infants who are deaf or hard of hearing. So let me begin by sharing my
own perspective and how my experiences have brought me to the writ-
ing of this book. My passion for the field of early intervention has been
a natural progression from my first area of academic interest, sociology,
to my second area of study, deaf education. This led to my doctoral
studies in the field of early childhood education. My formal education
represents many years of study, but it pales in comparison to the educa-
tion I received from the people with whom I have worked throughout
the years.
My real learning began with the children and families I worked with
in elementary school, in preschool, and in parent–infant programs in
schools and programs for deaf children. My understanding of what it
means to be deaf or hard of hearing deepened when I arrived at Gallaudet
University. My mentors have been the many undergraduate and graduate

xv
xvi  Preface

students I  have taught, as well as my colleagues and friends. Without

them, I would not be the professional I have become.
As a hearing person, I  will always be an outsider to the Deaf
Community and am indebted to my friends and colleagues who have
coined the expression “ally to the Deaf Community,” giving status to my
work and giving me a sense of belonging in the Community. I strongly
believe that it is not possible to provide effective services to children or
their families without understanding, if only as an ally, the life experi-
ences of people who are deaf or hard of hearing.
Melding the real life experiences of families, garnered from both prac-
tice and research, with my appreciation of the rich cultural and linguistic
heritage, strengths, and abilities of people who are deaf or hard of hearing
has not always been easy. Conflicts inevitably arise as we try to navigate
the minefield of child rights, family rights and responsibilities, legislation
and policy, and community involvement. The field of early intervention
is the place in which the differences in beliefs and philosophies about
what is best for children who are deaf or hard of hearing collide. Early
intervention is the perfect training ground for learning how to collabo-
rate with others whose values, experiences, and perspectives are different
from our own.
I am proud to have been affiliated with programs that have prepared
many outstanding professionals to work with infants, toddlers, and their
families. These programs emphasized interdisciplinary perspectives and
encouraged students to keep open minds and open hearts. As an early
believer in the value of collaboration, I  have been determined to pro-
vide training that includes courses and practicum experiences taught and
facilitated by professionals from disciplines outside of the field of edu-
cation, for example, audiology, speech-language pathology, counseling,
and social work, and by parents and other caregivers. The results of this
interdisciplinary “experiment” yielded high marks from learners, while
sometimes raising eyebrows from my colleagues who were skeptical of
what professionals from other disciplines might offer to the preparation
of early education specialists.
My conviction concerning the importance of interdisciplinary training
for early intervention professionals led to the creation of the Deaf and Hard
 Preface  xvii

of Hearing Infants Toddlers and their Families (ITF) Interdisciplinary

Graduate Certificate Program. My colleague, Beth S. Benedict, and I de-
veloped an innovative blended program (online and face-to-face) to pro-
vide teachers, audiologists, speech-language pathologists, counselors,
psychologists, and social workers with the knowledge and skills they
would need to practice their respective crafts in early intervention pro-
grams. The program was designed to infuse best practices in early inter-
vention with an appreciation of the language, cultural experiences, and
life experiences of deaf and hard-of-hearing people. As such, it has served
as the groundwork for the topics and perspectives included in this book.
The compilation of these 10 chapters, with their multiple authors and
points of view, exemplifies the importance of collaboration. The authors
are experts in different disciplines and often possess divergent philosoph-
ical perspectives. Each chapter is written by an interdisciplinary team that
have academic backgrounds in fields such as audiology, speech-language
pathology, medicine, education, counseling, psychology, and social work.
The authors are parents of deaf or hard-of-hearing children, profession-
als who are deaf, hard of hearing, or hearing, and other experts from the
United States and beyond. The book illustrates how the collaboration of
professionals with different areas of expertise is essential to the whole
of what professionals working with infants, toddlers, and their families
need to know.
Few people would argue that collaboration and interdisciplinary team-
work comprise the right approach for working with families and their
infants and toddlers. As researchers, faculty, program administrators,
and consultants, the authors of this book were challenged to create chap-
ters that reflected their respective areas of expertise and demonstrate how
collaboration works. This experience came naturally for some and proved
challenging for others. Our academic disciplinary differences proved
to be only the tip of the iceberg. Our diversity, as in all teams, is also
reflected in our different life and work experiences; our values, beliefs,
language, and traditions; our communication and working styles; as well
as our personalities.
When the authors of the chapters were asked to share their thoughts
about their collaborative experiences the following descriptors came
xviii  Preface

to mind: energizing, tapestry of ideas and experiences, mutual respect,

synergistic, challenging, confusing, uneasy, informative, engaging, and
rewarding.
Others shared these thoughts:

• Our collaboration and different experiences/responsibilities helped

us move between theory, policy, and practical application.
• It really taught me a whole lot … and has strongly reinforced very
important values and meaning related to the practice of partnership,
collaboration, and relationship building.
• I felt the lead author respected and incorporated my input very well.
I  think she also appreciated my “2nd eyes” (aka Deaf eyes) to the
editing part.
• Our writing experience was like a “patchwork quilt” that incorpo-
rates years of work and results in a serviceable, yet unique product
with some “rough spots.”
• This collaborative writing experience was the most challenging proj-
ect of my career.

The preparation of this book was a true interdisciplinary and collabora-

tive experience that proved to be both challenging and rewarding for us
all. Interdisciplinary collaboration, whether on a writing team or an early
intervention team, is not easy.
You will likely notice that we have paid special attention to terminol-
ogy. This may at first seem strange or just different from the terminol-
ogy you are accustomed to seeing in other literature. The terminology
used was based on input from several individuals with different perspec-
tives, all with an eye toward presenting an accurate and respectful view
of being deaf or hard of hearing. Most notably, you will not see the term
“hearing loss” used to describe newborns who are born deaf or hard of
hearing. Newborns do not technically “lose” their hearing and, therefore,
their hearing status is not about “loss.” We have avoided terms such as
“diagnosis” and “degree of hearing loss” and whenever possible we use
“family” or “parents and other caregivers” to reflect the importance of the
child’s whole family. We do not use “D/HH,” but instead we use “people
who are deaf or hard of hearing” or “deaf or hard-of-hearing people.” We
 Preface  xix

determined that the shorthand D/HH, though taking up significantly less

space, was less personal and respectful.
The book is organized into two parts. Part I  addresses the founda-
tional knowledge needed by early intervention providers. The first two
chapters present the knowledge, skills, and dispositions early interven-
tion specialists need, and how to develop and sustain exemplary practice.
Chapter 3 emphasizes the diversity of families along many dimensions,
including, but not limited, to linguistic and cultural perspectives. This
chapter challenges readers to examine their own beliefs and biases and
proposes suggestions for how to establish partnerships with families.
Chapter 4 focuses on legislation, policies, and research providing read-
ers with the information that frames the structure of early intervention
programs and services and informs best practices. Chapter  5 discusses
collaboration with deaf and hard-of-hearing communities, highlighting
an essential component of early intervention programming that is often
missing and undervalued.
Part II of the book focuses on the implementation of early inter-
vention practices. Its first chapter, Chapter  6, about “getting started,”
addresses the early hearing screening and evaluation process as well as
how to work with families and other professionals who are major play-
ers in the life of an infant who is deaf or hard of hearing. Chapter  7
includes important guidelines for the effective assessment of the abili-
ties and needs of all infants and toddlers who are deaf or hard of hear-
ing. Chapter  8 describes the heart of early intervention programming
for these children and their families. It reviews what we know about
early language acquisition and highlights two different approaches: an
ASL/English Bilingual approach and a Listening and Spoken Language
approach. Chapter 9 pulls together the work of the preceding chapters
by describing the Individualized Family Service Plan (IFSP) process and
the development of appropriate programming and services. The final
chapter provides the reader with a perspective on early intervention
from within “challenging national contexts.” It encourages the reader
to reflect on the assumptions that are made from the point of view of
resource-wealthy countries that shape, and often bias, our understand-
ing of early intervention practices.
xx  Preface

Each chapter includes a vignette that helps the reader apply

evidence-based information to real-life circumstances. Chapters include
guiding questions for the reader, indicate which of the nine areas of
core competencies from the Knowledge and Skills of Early Intervention
Providers found in the appendix of the Supplement to the Joint Committee
on Infant Hearing 2007 Position Statement (JCIH, 2013) are addressed,
and provides suggested activities and recommended resources.
This book is written for all who are involved in the early hearing
detection and intervention process. Those who will find this text most
valuable will be early intervention specialists from different disciplinary
backgrounds, program directors and other administrative staff, as well as
those who are concerned with the implementation of best practices and
effective programs for infants, toddlers, and their families.
Marilyn Sass-Lehrer
 ACKNOWLEDGMENTS

This book is clearly the result of the knowledge, skills, and exper-
tise of many very talented professionals in the field of early intervention
for children who are deaf or hard of hearing and their families. Our work
is built on the backs of many others who came before us. Their vision and
commitment to early intervention are apparent on each of the pages of
this book. One of these visionaries was Marion Downs whose extraordi-
nary life has been an inspiration to many of us in this field. In addition
to the outstanding authors of these chapters, for whom I have the utmost
respect, many people “behind the scenes” have made this book possible.
I begin first with my family, who has buoyed my efforts at every turn.
My mother used to say, “Nothing worth doing is ever easy.” For whatever
reason, I turned that into “Everything worth doing is worth overdoing,”
a phrase attributed to Mick Jagger. I seem to have a knack for finding the
most difficult ways of achieving even the simplest of goals, and then over-
doing it. Thankfully, my husband, Sande, has put up with me for many
years, and has been my strongest supporter. I am so grateful to him, to

xxi
xxii  Acknowledgments

my daughter, Carly, and to my other family members and friends who,

despite my quirks, have stood by and cheered me on, whether running
the New York City Marathon or writing books.
Professionally, I  am most sincerely grateful to Dr.  Kathryn
P. Meadow-Orlans, who was my first mentor. Kay was the perfect
mentor and role model to me as a researcher, writer, free and indepen-
dent thinker, hard worker, and the best collaborator ever. Her support
and encouragement have given me confidence throughout my profes-
sional career to do what I  believe is right and to pursue professional
dreams I would never have imagined. My heartfelt appreciation goes out
to Kay.
My friend and colleague, Beth Benedict, has been another key men-
tor to me. We can only hope to find a few really good friends and col-
leagues in life (I think my mother told me that as well). Beth is surely one
of them. She has contributed more to my professional development and
career than she can imagine. My dear friend, Beth, who reminds us at
every opportunity:  “Individually we are one drop. Together, we are an
ocean” (Ryunosuke Satoro).
I have been truly blessed to have had many wonderful students and
graduate assistants throughout my career who have contributed signif-
icantly to many projects—not only through their dedication and hard
work, but also through their thoughtfulness and generosity. One very
special former student and now colleague, Nicole Hutchinson, has been
the anchor and the keel for this project. She has righted the boat when-
ever a crisis emerged and has contributed to both the content and for-
matting of the book. She is now an expert on APA style and whatever
grammatical challenges you can throw her way. She is also a stellar early
intervention professional with an amazing future ahead. I am very fortu-
nate to have Nicole in my life both professionally and personally.
Finally, my thanks to Oxford University Press who agreed that the
time was right for a book on early intervention and interdisciplinary
practice to join the ranks of their excellent series, Professional Perspectives
on Deafness.
 CONTRIBUTORS

Beth S. Benedict Jodee Crace

Faculty Fellow, Undergraduate Early Education and Family
Admissions and Outreach Support Provider and
Deaf and Hard of Hearing Consultant
Infants, Toddlers and Families Westfield, IN
Interdisciplinary Program American Society for Deaf
American Society for Deaf Children
Children Deaf and Hard of Hearing
Gallaudet University Infants, Toddlers and Families
Washington, DC Interdisciplinary Program
Gallaudet University
Washington, DC

xxiii
xxiv  Contributors

Rosemary Gallegos Mary Pat Moeller

New Mexico School for Center for Childhood Deafness
the Deaf, Superintendent and Language Development
Santa Fe, NM Laboratory
Boys Town National Research
Maribel Gárate
Hospital
Department of Education
Omaha, NE
Gallaudet University
Washington, DC Mary Ellen Nevins
Department of Audiology and
Kristi Halus
Speech Pathology
Early Intervention and
University of Arkansas for Medical
Involvement Division
Sciences
New Mexico School for
Little Rock, AR
the Deaf
Santa Fe, NM Debra Nussbaum
Laurent Clerc National Deaf
Nicole Hutchinson
Education Center
Early Intervention Deaf and
Gallaudet University
Hard of Hearing
Washington, DC
The River School
Washington, DC Stephanie Olson
Bill Daniels Center for Children’s
Susan Lenihan
Hearing
Department of Communication
Children’s Hospital Colorado
Disorders and Deaf Education
Aurora, CO
Fontbonne University
St. Louis, MO Paula Pittman
SKI-HI Institute
Linda Lytle
Utah State University
Department of Counseling
Logan, UT
Gallaudet University
Utah Schools for the Deaf
Washington, DC
and Blind
Ogden, UT
 Contributors  xxv

Ann Porter Rachel St. John

Aussie Deaf Kids Family Focused Center for Deaf
Brunswick Heads, New South and Hard of Hearing Children
Wales Department of Otolaryngology
Australia Dallas Children’s/University of
Texas Southwestern Medical
Barbara Raimondo
Center Dallas
Policy Consultant
Dallas, TX
Washington Grove, MD
Deaf and Hard of Hearing Claudine Störbeck
Infants, Toddlers and Families Centre for Deaf Studies
Interdisciplinary Program HI HOPES
Gallaudet University University of the Witwatersrand
Washington, DC Johannesburg, SA
Visiting Professor
Marilyn Sass-Lehrer
University of Manchester
Department of Education
Manchester, UK
Deaf and Hard of Hearing
Infants, Toddlers and Families Arlene Stredler-Brown
Interdisciplinary Program Department of Speech, Language,
Gallaudet University and Hearing Sciences
Washington, DC University of Colorado
Boulder, CO
Angela Shoup
Visiting Lecturer
Department of Otolaryngology
University of British Columbia
Division of Communicative and
Vancouver, BC
Vestibular Disorders
Canada
University of Texas Southwestern
Medical Center/Children’s
Health/Parkland Health and
Hospital System
Dallas, TX
xxvi  Contributors

Amy Szarkowski Christine Yoshinaga-Itano

Deaf and Hard of Hearing Department of Speech, Language,
Program and Hearing Sciences
Department of Otolaryngology Institute of Cognitive Science,
Boston Children’s Hospital Center for Neurosciences
Department of Psychiatry University of Colorado
Harvard Medical School Boulder, CO
Boston, MA
Alys Young
Deaf and Hard of Hearing
School of Nursing, Midwifery and
Infants, Toddlers and Families
Social Work
Interdisciplinary Program
University of Manchester
Gallaudet University
Manchester, UK
Washington, DC
Visiting Professor
Cheryl L. Wu Centre for Deaf Studies
Department of Counseling University of Witwatersrand
Gallaudet University Johannesburg, SA
Washington, DC
PART I

Early Intervention Foundations

1 What Every Early Intervention Professional
Should Know
Marilyn Sass-Lehrer, Mary Pat Moeller, and Arlene Stredler-Brown

Dr.  Smith is the director of a statewide early intervention program

and is responsible for ensuring the quality of services provided by the
early interventionists in her state. She is also responsible for provid-
ing professional development to support these interventionists. She
recognizes that these providers need specialized expertise, but she is
uncertain about the specific needs of early intervention professionals
who work with infants and toddlers who are deaf or hard of hearing
and their families. Dr.  Smith is searching for guidance about what
to include in a professional development program. She asks, “What
knowledge, skill sets, and dispositions are needed by providers to
optimize the early development of infants and toddlers who are deaf
or hard of hearing and to support their families?” She wonders how
she will verify that the early intervention providers in her program
have the requisite skills.

3
4  Early Intervention Knowledge and Skills of Professionals

GUIDING QUESTIONS

1. What current best practice guidelines and recommended practices could

serve as a guide to the implementation of quality early intervention serv-
ices with families of infants and toddlers who are deaf or hard of hearing?
2. How are the recommendations for working with young children who are
deaf or hard of hearing similar to, and yet different from, the practices
recommended in the early childhood special education literature?
3. How might a core set of competencies based on best practice standards
in early childhood special education, deaf education, and related disci-
plines be used to improve the quality of services delivered by early inter-
vention specialists?

COMPETENCIES ADDRESSED IN THIS CHAPTER

This chapter describes the need for clear articulation of the knowledge, skill
sets, and dispositions required by early intervention providers in their work
with infants and toddlers who are deaf or hard of hearing and their fami-
lies. It prepares readers to consider how The Knowledge and Skills of Early
Intervention Providers [Joint Committee on Infant Hearing (JCIH), 2013] can be
used in their programs to support these children and their families in attaining
the best possible outcomes.

INTRODUCTION

Newborn hearing screening and early identification of hearing ability

have become the standard of practice in the United States and many other
countries. Infants and toddlers who are deaf or hard of hearing should be
referred for early intervention services as soon as their hearing status has
been confirmed (JCIH, 2007; Moeller, Carr, Seaver, Stredler-Brown, &
Holzinger, 2013). For many infants this occurs during the first few weeks
of life. These infants, as a group, are very diverse, with varied hearing and
developmental abilities. Infants who are referred for early intervention
 Sass-Lehrer et al.  5

services have hearing abilities that range from profoundly deaf bilaterally
(in both ears) to hard of hearing with thresholds in the minimal/mild
range bilaterally or unilaterally (in one ear). They may arrive as full term,
strong healthy babies or medically fragile newborns. They may have a
disability that impacts their physical development or cognitive ability, or
they may be fully able in all developmental areas except for the ability to
hear. Notably, it is estimated that 35–40% of all children who are deaf or
hard of hearing have other conditions or disabilities (Gallaudet Research
Institute, 2010; Yoshinaga-Itano, Sedey, Coulter, & Mehl, 1998).
Families with deaf or hard-of-hearing children, like all families, have
a range of abilities, aspirations, resources, and experiences. The parents
or caregivers may be deaf or hearing. They may be well educated or have
limited schooling. They may have access to numerous family and com-
munity resources or have few formal and informal support systems.
Many families communicate using a language other than spoken English;
they may identify with cultural communities whose beliefs and values are
unfamiliar to the professionals they meet. Being deaf or hard of hearing
is not exclusive to any culture, geography, or human condition. Families
with children who are deaf or hard of hearing have different perspectives
and expectations of early intervention specialists, and the services they
receive need to fit their distinct life situations (Dromi & Ingber, 1999;
and Chapter 3, Families: Partnerships in Practice). Families benefit when
professionals are open to learning and understanding each family’s con-
text, are willing to engage in reflective practices, and are able to adapt
their interactions in ways that best fit the family (Hanson & Lynch, 2013).
Dr. Smith, like other statewide early intervention program directors,
faces the challenge of ensuring that all professionals, regardless of their
backgrounds and training, have the skills to meet the needs of infants
and toddlers who are deaf or hard of hearing. Providers in her state come
from varied professional disciplines (e.g., Speech-Language Pathology,
Audiology, Deaf Education, Early Childhood Special Education). Each of
these professionals brings expertise from his or her respective specialty
fields. Training requirements are discipline specific so there is a high like-
lihood that professionals have unique gaps in the information, skills, or
dispositions they need to work effectively with infants, toddlers, and their
6  Early Intervention Knowledge and Skills of Professionals

families (Arehart & Yoshinaga-Itano, 1999; Rice & Lenihan, 2005; Roush,
Harrison, Palsha, & Davidson, 1992). This chapter focuses on the knowl-
edge, skills, and dispositions all early interventionists need to provide
high-quality services to young children who are deaf or hard of hearing
and their families.

EDUCATIONAL BACKGROUND OF EARLY INTERVENTION

SPECIALISTS

The quantity and quality of coursework and experience in early inter-

vention preparation programs vary greatly among professions. Less
than half of the early intervention providers of children who are deaf or
hard of hearing have been trained as teachers of deaf children (Proctor,
Niemeyer, & Compton, 2005; Stredler-Brown & Arehart, 2000). Teachers
of deaf children have expertise regarding the effects of being deaf or hard
of hearing on communication and know how to promote communica-
tion access. However, they may be lacking in the specialized knowledge
and skills required to work with infants and toddlers and their families
(Campbell, Chiarello, Wilcox, & Milbourne, 2009; Jones & Ewing, 2002;
Meadow-Orlans, Mertens, & Sass-Lehrer, 2003; Rice & Lenihan, 2005;
Roush et  al., 1992; Roush, Bess, Gravel, Harrison, Lenihan, & Marvelli,
2004). Speech-language pathologists (SLPs) have very different preservice
training than other early intervention service providers. SLPs will have
had coursework related to communication and language development;
they may not have received specialty training, however, related to the dif-
ferent approaches and modalities used to promote communication access
for children who are deaf or hard of hearing. In contrast, early child-
hood educators may have training in family-centered practice and early
developmental milestones, but lack specific training to manage hearing
technology, understand deaf culture, or guide the family in ways to com-
municate with their deaf or hard-of-hearing child. Research from Proctor
et  al. (2005) suggests that early intervention providers lacked specialty
training in auditory–verbal therapy and sign language, and that in-service
on these specific topics was challenging to obtain (Proctor et al., 2005).
 Sass-Lehrer et al.  7

Given the current state of affairs in personnel preparation, it is not sur-

prising that many early intervention specialists, regardless of their aca-
demic backgrounds, begin their work with children who are deaf or hard
of hearing with limited experience (Roush et al., 2004). Clear articula-
tion of the specialized competencies, dispositions, knowledge, and skills
needed to serve deaf or hard-of-hearing infants and their families could
lead to improved early intervention services and outcomes for children
and their families.

EARLY CHILDHOOD EDUCATION LEGISLATION, POLICY, AND

ACCOUNTABILITY

Legislation and Policy
The qualifications of personnel who provide services to infants and toddlers
are established by federal law in the United States through the Individuals
with Disabilities Education Improvement Act Part C [Individuals with
Disabilities Education Improvement Act (IDEA), 2004]. See Box 1.1 for a
summary of this legislation. Qualified providers, according to Part C of
IDEA, include professionals from the education and health care fields.
IDEA Part C regulations define qualified personnel as “. . . personnel who
have met State approved or recognized certification, licensing, registra-
tion or other comparable requirements that apply to the areas in which
the individuals are conducting evaluations or assessments or providing
early intervention services” (IDEA, 2011: 34 CFR §303.31). Each state has
a designated Part C coordinator responsible for ensuring that early inter-
vention services are provided by personnel who meet these requirements
(IDEA, 2004). Specialists working with deaf or hard-of-hearing infants,
toddlers, and their families need knowledge and skill sets that extend be-
yond the minimal qualifications as described in the legislation.
The disciplines of early childhood education (ECE) and early child-
hood special education (ECSE) have collaborated to develop person-
nel standards guided by research, legislation, and policy initiatives. The
National Association for the Education of Young Children (NAEYC)
and the Division for Early Childhood (DEC), a subdivision of the
8  Early Intervention Knowledge and Skills of Professionals

BOX 1.1  PART C OF IDEA: THE EARLY INTERVENTION PROGRAM FOR INFANTS

AND TODDLERS WITH DISABILITIES

• Established by Congress in 1986

• Federal grant to help states provide comprehensive statewide services
• Designed to improve/expand services to eligible infants from birth to
3 years old
• Focuses on building capacity of families to meet their child’s needs
• Includes the following components:
• Eligibility Requirements
• Child Find and Referral
• Evaluation and Assessments
• Individualized Family Service Plan (IFSP)
• Early Intervention Services
• Personnel Development and Qualifications
• Family Rights and Procedural Safeguards
• Child and Family Outcomes Data
• State Interagency Coordinating Council
• Policies on Natural Environments
• Transition from Part C (Early Intervention) to Part B (Special
Education)

Council for Exceptional Children (CEC), have established personnel

preparation standards and identified knowledge and skills for early
childhood special educators and early interventionists (Chandler
et  al., 2012; Division for Early Childhood, 2014; National Association
for the Education of Young Children, 2009; Winton, McCollum, &
Catlett, 2008). These professional standards are based on several fac-
tors: (1) professional and family values and philosophical perspectives
regarding early childhood; (2)  recommended practices for teaching
and supporting young children’s development and establishing positive
relationships with families; (3)  evidence-based strategies and assess-
ment practices; and (4) desired outcomes for young children and fami-
lies (McCollum & Stayton, 1996).
 Sass-Lehrer et al.  9

Accountability
Dr. Smith is well aware of the federal initiative in the United States that now
requires states to provide evidence of positive outcomes for young children
and their families [see the Early Childhood Technical Assistance Center
(ECTA) weblink under Recommended Resources for this chapter]. States
must report the progress their programs are making to meet early learning
standards, outcomes that are identified as part of the Individualized
Family Service Plan (IFSP), or goals from the Individualized Education
Plan (IEP). These measures of accountability have raised expectations for
professionals who deliver services to very young children and their fami-
lies, including children who are deaf and hard of hearing.
Professionals must have the appropriate knowledge, skills, and dispo-
sitions to make a positive difference in child and family outcomes (Bailey
et al., 2006; Chandler et al., 2012). Bruder (2010) recommended that the
field of early intervention adopt a “culture of accountability across all
dimensions of service provision (p. 346).” This requires clear delineation
of competencies and best practices of providers that link to positive child
and family outcomes.

Competencies
Dr.  Smith must ensure that her early intervention specialists are com-
petent. This includes educators and therapists providing direct services
as well as those working in consultative, advocacy, training, and other
leadership roles. In 1990, Fenichel and Eggbeer described competence as

. . . the ability to do the right thing at the right time for the right
reasons. Competence involves the capacity to analyze a situation,
consider alternative approaches, select and skillfully apply the best
observation or intervention techniques, evaluate the outcome, and
articulate the rationale for each step of the process. Competence
generally requires a combination of knowledge, skills and experi-
ence. Competence for work with infants and families cannot be
inferred from the completion of academic coursework alone; it
must be demonstrated. (p. 9)
10  Early Intervention Knowledge and Skills of Professionals

Ten years later, Bruder (2010) noted that there is a growing gap be-
tween what is known to be effective practices in early childhood inter-
vention and the content of personnel preparation programs as well as
the practices of professionals in the field. Thorp and McCullom (1994)
have defined the following four competency areas for early intervention
specialists regardless of the unique individual strengths and challenges
of the child or the family:

1. Child-related competencies (knowledge of cognitive, social, and af-

fective development; skills in developmental assessment; design of
learning environments; strategies to promote engagement and in-
teraction; skills in data collection and evaluation).
2. Family-related competencies (strategies for including family

members as partners in planning and implementing interven-
tion, strategies for promoting interaction between parent and
child).
3. Team-related competencies (skills in integrating the knowledge and
recommendations of multiple disciplines into the child’s and fam-
ily’s daily routines).
4. Agency-related competencies (knowledge of community resources,
developing blended service plans).

Professional competence implies the ability to collaborate with pro-

fessionals who have different disciplinary backgrounds as part of an
interdisciplinary team (Winton et  al., 2008). Professionals must also
have the skills to work with children and families with different abilities
and needs and in different settings, such as the home, early childhood
center, play group, or clinic. Although Part C of IDEA emphasizes the
home as the preferred learning environment for young children be-
tween birth and 3 years old, professionals working with children who
are deaf or hard of hearing consider additional environments in the
community and early intervention program sites that may provide a
wealth of learning opportunities for these children and their families
(ASHA-CED Joint Committee, 2006).
 Sass-Lehrer et al.  11

Dispositions
Dr. Smith is aware that beyond content knowledge and skills, the early
intervention professionals in her state must also possess personal quali-
ties and dispositions to promote positive outcomes for children and their
families. The National Council for Accreditation of Teacher Education
(NCATE, 2015) describes professional dispositions as follows:

Professional attitudes, values, and beliefs demonstrated through

both verbal and non-verbal behaviors as educators interact with
students, families, colleagues, and communities.

At the heart of the work of the early interventionist is the ability

to develop positive, respectful, and collaborative relationships with
families (Klein & Gilkerson, 2000). In addition to an understanding
of family-centered principles (see Chapter  3, Families:  Partnerships in
Practice, for more information on family centeredness), professionals
must possess strong communication skills including the ability to ac-
tively listen to families’ stories and be able to communicate empathy and
compassion. Families must be able to develop a trusting relationship
with the professionals who work closely with them at a time that is often
very emotional and personal for them. Professionals must demonstrate
confidentiality and trustworthiness, and must show that they value and
respect the family’s priorities and concerns. Although professionals may
have personal values and beliefs that do not align with those of the fam-
ily with whom they are working, it is essential that professionals set aside
their own views in order to support the family as the family moves from
the unknown to a place in which they are able to make informed deci-
sions on behalf of their child and their entire family.
NAEYC suggests that dispositions should be addressed intention-
ally and systematically and in the same manner as knowledge and skills
when designing and implementing early childhood professional prepara-
tion programs. Although knowledge and skills can be acquired through
academic experiences, many of the fundamental dispositions include
personal qualities that are intuitive and may be challenging to acquire.
12  Early Intervention Knowledge and Skills of Professionals

Program directors and administrators may want to keep this in mind

when selecting professionals to work in their early intervention programs.

LEGISLATION AND POLICIES FOR EARLY INTERVENTION

SPECIALISTS WORKING WITH CHILDREN WHO ARE DEAF OR HARD
OF HEARING

Legislation and policy initiatives have set guidelines and standards that
support the quality of services and the qualifications of personnel for all
infants and toddlers who are eligible for early intervention. In addition,
there are federal laws and policies that specifically apply to infants and
toddlers who are deaf or hard of hearing.

Legislation
The Newborn and Infant Hearing Screening and Intervention Act, first
passed in 1999, provided support and guidance to state personnel as
they planned, developed, and implemented statewide newborn and
infant hearing screening programs. This Act was reauthorized as the
Early Hearing Detection and Intervention Act (2010) and expanded
the focus on diagnostic and early intervention services. The more re-
cent bill advocates for prompt evaluation and identification of children
referred from newborn hearing screening programs and appropriate
educational, audiological, and medical services for children identified
as deaf or hard of hearing. The reauthorized legislation addresses the
recruitment, retention, education, and training of qualified personnel.
State agencies are encouraged to adopt models that effectively reduce
loss to follow-up and ensure an adequate supply of qualified personnel
to meet the screening, evaluation, and early intervention needs of chil-
dren. The Early Hearing Detection and Intervention Act is described in
more detail in Chapter 4.

Policies and Initiatives

As more infants and toddlers are identified through newborn hearing
screening, there has been a growing interest in the quality of the provid-
ers serving these children and their families. Policy initiatives have arisen
 Sass-Lehrer et al.  13

in an effort to ensure that well-trained early intervention specialists work

with deaf or hard-of-hearing infants.
There is evidence that children who are deaf or hard of hearing receiving
early intervention have better opportunities to achieve age-appropriate
language and cognitive skills than children who are identified later
(Calderon, 2000; Kennedy et  al., 2006; Moeller, 2000; Wake, Hughes,
Poulakis, Collins, & Rickards, 2004; Yoshinaga-Itano, 2003). Researchers
have suggested that professionals with specialized knowledge, skills, and
experience contribute to the positive outcomes experienced by infants
and toddlers who have the benefit of early and comprehensive serv-
ices (Calderon, 2000; Moeller et  al., 2007; Nittrouer & Burton, 2001;
Yoshinaga-Itano, 2003). Since the early years of the twenty-first century,
initiatives have focused on the identification and dissemination of the
requisite knowledge and skills of early intervention providers (Compton,
Neimeyer, & Shroyer, 2001; JCIH, 2007, 2013; Marge & Marge, 2005;
Nelson, Bougatsos, & Nygren, 2008).
Compton et  al. (2001) identified a set of standards for professionals
working with infants and toddlers who are deaf or hard of hearing. The
standards were derived from an analysis of existing principles in deaf
education and early intervention, synthesized by national experts, and
reviewed by practicing professionals, family members, and training pro-
fessionals. This process identified these focus areas: (1) major legislation;
(2) relationships with families; (3) infant development; (4) communica-
tion; (5) teaming and service provision; (6) assessment; (7) technology;
and (8) ethics/professionalism.
The Consensus Conference on Effective Educational and Health Care
Interventions for Infants and Young Children with Hearing Loss was held
in 2004. The meeting participants identified evidence-based research that
contributed to high-quality early intervention for young children who are
deaf or hard of hearing. A report from the Consensus Conference (Marge
& Marge, 2005) included recommendations for effective programming,
defined characteristics of qualified providers, and summarized implica-
tions for professional practice.
The Year 2007 Position Statement of the Joint Committee on Infant
Hearing (JCIH) underscored the need for trained early intervention
14  Early Intervention Knowledge and Skills of Professionals

specialists and recommended that early intervention programs ensure

professionals have the special skills needed to provide families with
“. . . the highest quality of service specific to children with hearing loss”
(p. 909). The JCIH Position Statement also stated that “. . . professionals
should be highly qualified in their respective fields and should be skilled
communicators who are knowledgeable and sensitive to the importance
of enhancing families’ strengths and supporting their priorities. . . .”
(p. 909).
The 2013 Supplement to the 2007 JCIH Position Statement:  Principles
and Guidelines for Early Intervention After Confirmation That a Child is
Deaf or Hard of Hearing (JCIH, 2013) focused exclusively on early inter-
vention and outlined the best practices to facilitate optimal outcomes for
children and their families. Goal 3 of this document proposes that “All
children who are deaf or hard of hearing birth to three years of age and
their families have early intervention providers who have the professional
qualifications and core knowledge and skills to optimize the child’s devel-
opment and child/family well-being” (p. 1328). This document includes
the following recommendations for state and territorial programs:

1. Adopt and implement guidelines that address the professional

qualifications required for providing family-centered intervention
to families and children who are deaf or hard of hearing from birth
to age 3.
2. Ensure stakeholders’ participation in the adoption and implementa-
tion of these guidelines.
3. Provide the resources needed for professionals to obtain the core
knowledge and skills to serve children who are deaf and hard of
hearing from birth to age 3 and their families. (See Chapter 4 for
more information on the 2007 JCIH Position Statement and the
JCIH Supplement to the 2007 Position Statement.)

In 2013, a panel of experts developed an international consensus state-

ment identifying ten foundational principles underlying the provision
of early intervention (Moeller et al., 2013). The panel included parents,
deaf professionals, early intervention program leaders, early intervention
specialists, and researchers from around the world. Panelists identified
 Sass-Lehrer et al.  15

research evidence to support the 10 fundamental principles. Principle 7

addresses Qualified Providers and states:

Providers are well trained and have specialized knowledge and

skills related to working with children who are D/HH [deaf or hard
of hearing] and their families. Providers possess the core compe-
tencies to support families in optimizing the child’s development
and child-family well-being. (p. 439)

The United States Preventive Services Task Force (USPSTF) released

a statement recommending the practice of universal newborn hearing
screening. The statement indicated there was good evidence that hear-
ing screening is highly accurate and leads to earlier identification and
intervention services as well as improved language outcomes (Nelson
et al., 2008). Although more research is needed, the quality of inter-
vention services is likely an important factor influencing child and
family outcomes.

THE KNOWLEDGE AND SKILLS DOCUMENT

Research findings and policy documents suggest a link between the qual-
ity of the early intervention and child outcomes. This premise under-
scores the need to understand exactly what knowledge and which skills
consistently lead to quality services for infants who are deaf or hard of
hearing and their families.
The landscape of early intervention for infants, toddlers, and their
families has changed markedly in recent years. Infants enter early
intervention at ages younger than ever before (Dalzell et  al., 2000;
Halpin, Smith, Widen, & Chernoff, 2010; Holte et al., 2012), are often
from culturally diverse families, and may have complex medical and
educational needs. Hearing technologies have evolved presenting the
need for increased specialized expertise. In response to these changes,
professionals are called upon to transform their knowledge, skills, and
practices. Providers need to be well versed in the tenets of culturally
competent, family-centered practices. Providers need dispositions,
16  Early Intervention Knowledge and Skills of Professionals

knowledge, and skills in developmental, communicative, and techno-

logical areas that are up to date and specific to working with this pop-
ulation of children.
Dr. Smith, and other state and regional program directors, often lack
guidance from their state, district, or territory regarding who is qualified
to work as an early intervention provider. The legislation, policies, and
research described above represent a critical first step in developing a
document that describes the knowledge, skills, and dispositions of highly
effective early intervention providers. The authors of this chapter built
upon the previous work to define competencies in the form of a knowl-
edge and skills document. The goals were (1) to provide administrative
guidance; (2) to offer direction based on policies; and (3) to support pro-
fessional development. The overall aim was to enhance the competence
of all professionals working with infants who are deaf or hard of hearing
and their families.

Development of the Knowledge and Skills Document

The authors engaged in a 3-year project to describe the core knowledge
and skills that are needed by professionals to maximize positive out-
comes for very young deaf or hard-of-hearing infants and toddlers. The
process began with a needs assessment survey in 2007. The survey was
sent to national advocacy groups representing the interests of individu-
als who are deaf, member organizations of the Council on the Education
of the Deaf (CED), national organizations offering technical assistance
and support for early childhood initiatives, national training programs,
and a national organization representing special education in public edu-
cation. Survey results strongly supported the need to identify the core
knowledge and skills to work effectively with infants and toddlers under
3 years of age who are deaf or hard of hearing. One respondent stated that
“there is too much at stake for children who are deaf or hard of hearing
and their families to be receiving services from an individual who has no
knowledge of the deaf or hard of hearing and the language issues they
face” (Sass-Lehrer, Stredler-Brown, & Moeller, 2008). The results of this
survey were presented at the Early Hearing Detection and Intervention
conference in 2008.
 Sass-Lehrer et al.  17

The authors then set out to examine sets of existing documents that
specifically addressed the knowledge and skills needed by an early inter-
ventionist working with this population. Documents were included if
they were developed through a collaborative effort that reflected the
opinions of researchers, practitioners, and families. Eight documents
met these criteria. These documents ranged from extensive coverage of
the knowledge and skills to brief position statements. A list of the eight
documents can be found in Appendix 1 of the JCIH Supplement to the
2007 Position Statement (JCIH, 2013).
The CENTe-R document (Compton et al., 2001) was one of the iden-
tified documents and was used as a starting point for our review. This
document was most closely aligned with the overall goal of developing
a comprehensive listing of knowledge and skills for early intervention
specialists. The authors of this chapter reviewed the CENTe-R standards
and agreed upon nine broad competency areas that are somewhat dis-
tinct from the original CENTe-R focus areas. Each author individually
reviewed the standards in the CENTe-R document and placed each item
in one of the nine newly established categories. Disagreements were re-
solved through consensus.
The authors developed descriptions of each of the nine compe-
tency areas. Two of the three authors reviewed each of the remain-
ing seven documents independently. During this process, the authors
identified relevant items about professional knowledge and skills
from each of the remaining seven documents. Statements simi-
lar to those in the document of Compton et al. (2001) were noted.
Additional statements related to knowledge and skills were placed
in one of the respective nine categories. After all the documents
were reviewed, the authors met to identify redundancies and poten-
tial gaps. A few items were not mentioned in any of the eight docu-
ments, for example: (1) understanding family systems; (2) skills to
build partnerships; and (3) application of evidence-based practice.
These items were added to the list of core competencies. At the end
of the process, editorial revisions were made to enhance readability
and consistency in language. The final document includes a total of
116 knowledge and skill statements.
18  Early Intervention Knowledge and Skills of Professionals

The completed document was presented to the Joint Committee on

Infant Hearing, and the document was incorporated as an appendix in
the 2013 Supplement to the JCIH Position Statement.

Specialized Dispositions, Knowledge, and Skill Sets

The Knowledge and Skills of Early Intervention Providers (JCIH, 2013) reflects
both general and specialized areas of competence. General areas of compe-
tence include professional knowledge and skills that specialists need to work
with any young child who has a developmental or physical characteristic that
typically results in a developmental delay in one or more areas. Specialized
skills are those that are unique areas of competence for professionals who
work with deaf or hard-of-hearing infants, toddlers, and their families. Table
1.1 describes these specialized knowledge, skills, and dispositions drawn from
the Knowledge and Skills document described above (JCIH, 2013). Table 1.1
expands and extends each of the competency areas and provides examples
of selected specialized skills essential to meet the unique needs of infants and
toddlers who are deaf or hard of hearing and their families.

Potential Applications of the Knowledge and Skills Document

Program directors, such as Dr. Smith, can utilize the Knowledge and Skills
of Early Intervention Providers (JCIH, 2013)  and the expanded compe-
tencies in Table 1.1 in a variety of ways to ensure quality service provi-
sion by the early intervention specialists in her state. The knowledge
and skill areas could be used (1) as a tool for the selection and hiring of
early intervention providers; (2) as a self-assessment instrument allowing
providers to identify their own strengths and professional development
and learning needs; (3)  as a guide for the development of professional
learning activities; (4)  as a method to identify and support research;
and (5)  as a guide to inform policy on effective practices (Sass-Lehrer,
Stredler–Brown, Moeller, Clark, & Hutchinson, 2011).

Hiring Early Intervention Specialists

Finding and selecting early intervention specialists can be challenging
because applicants have academic preparation in deaf education, early
 Table 1.1  Specialized Knowledge, Skill Sets, and Dispositions for Professionals Working with Infants
Who Are Deaf or Hard of Hearing (DHH)a,b

Competency Area Unique Knowledge or Skill Sets

Family-Centered Have the information and skills to support families as they navigate many complex decisions
Practice: Family–Professional regarding language choice(s), communication approaches, technology, and services (often in the
Partnerships, Decision Making, first few months of infants’ lives) in the face of controversy, varied opinions, and limitations in
and Family Support evidence.
Must be well versed in the ongoing process of informed choice, including providing information on
benefits, risks, and uncertainties.
Must understand the types of support that promote family adjustment, including family-to-family
contacts and opportunities to interact with DHH individuals.
Socially, Culturally, and Understand and appreciate deaf cultural perspectives.
Linguistically Responsive Are fluent in native Sign Language (e.g., American Sign Language or other native Sign Language) if
Practices Including Deaf/ working with deaf families in early intervention. This fluency promotes partnership and allows
Hard-of-Hearing Cultures and the early intervention (EI) specialist to build upon family strengths.
Communities: Sensitivity to
Demonstrate respect for choices made by families and understand the unique cultural issues that
and respect for an individual
may influence their decision making.
family’s characteristics
Understand the complexity of being deaf in addition to other cultural or community affiliations and
traditions.
(continued)
 Table 1.1 Continued

Competency Area Unique Knowledge or Skill Sets

Language Acquisition Understand how the child’s hearing abilities can influence language access.
and Communication Work with the family to promote language accessibility, regardless of the communication approach taken.
Development: Typical
Understand the impact of technology on language access for individual children; foster maximal use
development and
of residual hearing in children developing spoken language.
communication approaches
available to children with Understand the developmental stages of the native Sign Language when families and children are
hearing loss, and the impact acquiring Sign Language.
of hearing loss on access to Are familiar with all approaches to communication development; if not conversant with an
communication approach of interest to the family, are able to find appropriate models and resources.
Provide models of infant-directed Sign Language use (including appropriate use of facial grammar,
sign prosody, etc.).
Provide models of infant-directed spoken language use (including appropriate variation in
suprasegmental aspects of speech).
Are able to monitor language development, regardless of the language or communication approach.
Are able to promote responsive interactions and use of strategies known to enhance linguistic
development in infants who are DHH.
Help families understand the importance of language access and the need to provide full and consistent
input to promote language growth.
Support families in developing a language-rich environment regardless of the approaches used.
Facilitate the development of fluent signing skills in families who elect to sign to promote child language
access.
Factors Influencing Infant and Recognize the key role of family-to-family support from others who have children who are DHH in
Toddler Development promoting family well-being.
Recognize that family-support organizations such as the A.G. Bell Association for the Deaf and
Hard of Hearing, the American Society for Deaf Children, and Hands & Voices have special
expertise to offer, and assist families in accessing them.
Are able to differentiate the characteristics of typical and atypical development in infants who are
DHH to support a differential diagnosis.
Collaborate effectively with medical, therapeutic, and educational professionals to address the
impact of additional disabilities in cognitive, vision, or motor development on DHH children’s
access to and/or expression of language.
Know how to modify intervention approaches to address the needs of DHH infants who have
additional cognitive or other developmental delays.
Understand the synergistic effects on development when infants have multiple developmental
challenges in addition to being DHH.
(continued)
 Table 1.1 Continued

Competency Area Unique Knowledge or Skill Sets

Screening, Evaluation, and Understand newborn hearing screening and audiological assessment procedures.
Assessment: Interpretation Know how to provide affective and informational support following a referral from newborn hearing
of hearing screening and screening, and how the process may differ from the past (when screening was not available).
audiological diagnostic
Understand and interpret results of Otoacoustic Emissions and Auditory Brainstem Response testing and
information; ongoing
support the family in understanding the results.
developmental assessment;
and use of developmental Understand and interpret behavioral audiological results and support the family in understanding the
assessment tools to monitor consequences for the child’s development.
progress Use a combination of authentic assessments, criterion referenced tools, and standardized instruments to
measure and monitor progress and set goals.
Know the strengths and limitations of these tools with infants who are DHH, and know how to adapt
procedures appropriately as needed.
Are knowledgeable and proficient in the assessment of language that is acquired through Sign Language.
Are knowledgeable and proficient in the interpretation of spoken language assessments and the ways in
which audibility may influence performance.
Are knowledgeable and proficient in assessing infants who are DHH who have multiple disabilities.
Technology: Supporting Are highly familiar with auditory, visual, and tactile technologies used to promote development in
development by using young children who are DHH.
technology to access Are able to troubleshoot technologies to ensure proper functioning; understand the need to
auditory, visual, and/or tactile regularly monitor technology.
information
Support families in determining their needs and accessing needed technologies.
Support families in consistently using, maintaining the proper functioning, and evaluating the
effectiveness of technologies.
Are well aware of current technologies used by deaf people that may have applications for hearing
families raising deaf children.
Are conversant with the current literature on expected rates of listening and spoken language
development for children with cochlear implants and hearing aids.
Planning and Implementation Provide social and emotional support; understand common reactions in hearing families who are
of Services: Creating a lesson told that their infant is DHH.
plan, conducting a home visit, Incorporate knowledge of the ways in which hearing status influences communication development;
developing the IFSP, and using incorporate this knowledge as a guide for planning work with families and their young children.
appropriate curriculums,
Understand the components that make effective educational programs for children who are DHH,
methods, and resources
including continuing use of effective communication approaches; rely on this knowledge to
support families of children who are DHH during the transition from early intervention to
preschool services.
(continued)
 Table 1.1 Continued

Competency Area Unique Knowledge or Skill Sets

Collaboration and Serve as members of an interdisciplinary team that may include, at a minimum, audiologists,
Interdisciplinary Models and ear-nose-and-throat physicians, primary care physicians, DHH professionals, cochlear implant team
Practices members, speech-language pathologists, teachers of the deaf, early childhood special education
(ECSE) professionals, services coordinators, and other parents.
Partner with service coordinators (SC) who may be unfamiliar with infants who are DHH; share
information and support the service coordinators’ roles.
Ensure that information unique to children who are DHH and their families is consistently shared across
team members.
Consider information from the full team as the family works through decision-making processes related
to selecting and using communication approaches and/or assistive technologies.
Recognize the biases that can create barriers to practice with DHH infants; work to remove those barriers.
Collaborate with professionals and agencies that can provide resources or expertise families need and/or
request (e.g., DHH mentors, access to visual and auditory technologies, listening therapy to promote
Cochlear Implant use, mental health specialists with knowledge about DHH).
Professional and Ethical Routinely implement evidence-based practice; monitor current research findings with practice
Behavior: Foundations of implications for children who are DHH.
early intervention practice, Work to recognize biases and demonstrate positive dispositions and transparency with families.
legislation, policies, and
Maintain appropriate professional boundaries with families and other professionals. For example,
research
providers recognize when their skills (e.g., fluency in sign language or specific skills in auditory
development) are insufficient to address what is needed and, in response, add team members to
ensure that the child’s and family’s needs are met.
a
Early intervention providers who work with infants who are deaf or hard of hearing and their families need to have the same set of knowledge and skills
required of any EI professional. However, they also need specialized knowledge and skills that are specific to serving this group of children and their fami-
lies. This table is not intended to be exhaustive; rather, it provides examples of some content, disposition, knowledge, or skill areas that are needed to serve
families of deaf or hard-of-hearing infants.
b
Adapted from JCIH (2013).
 Sass-Lehrer et al.  25

childhood special education, audiology, speech-language pathology,

and other disciplines. The Knowledge and Skills document lists compe-
tency areas that early interventionists should possess regardless of pro-
fessional training. Position announcements and interview questions can
be gleaned from this document. For example, interview questions might
include the following: “Describe the resources you might draw upon to
provide support for families with deaf or hard-of-hearing infants or tod-
dlers?” or “What strategies might you use to promote informed decision
making related to communication modalities and language use?”

Self-Assessment Tool
Early intervention professionals could use this document to assess their
own knowledge and skills. For example, in the area of Family-Centered
Practices, professionals could rate each of the knowledge and skill state-
ments according to the following: (1) How important is this skill area to
your work? (2) How confident are you in this area? and (3) Rate your
need for professional development of this competency. See Table 1.2
for an example. Professionals could then be asked to prioritize their
top needs for professional development. Program directors, such as
Dr. Smith, could use this information to identify topics for professional
in-service trainings.

Professional Learning
Professional development and learning specialists can use the knowl-
edge and skills document to design a program of studies for preservice
or practicing professionals. University training programs, professional
organizations, and entities offering certificate programs can use the
knowledge and skill statements in this document to design their pro-
grams. The various strategies and approaches used in training would
depend upon the community of learners. (See Chapter 2, Developing and
Sustaining Exemplary Practice Through Professional Learning. See Table
1.3 for an example of how a student learning outcome, learning strategy,
and an assessment of student learning could be developed based on one
of the competency statements.)
 Table 1.2  Example of Using the Knowledge and Skills Document for Self-Assessment

Competency Area Family-Centered Practice: Family–Professional Partnerships, Decision Making, and Family Support
Sample Competencies Rate the Rate Your Rate Your Need Prioritize the
Importance of Confidence in for Professional Competencies to
This Competency This Competency Development in Set Goals for Your
to Your Work This Competency Current Professional
Development (Check
mark the appropriate
competencies)

Recognize the expertise and 12345 12345 12345

major impact of families on children’s
growth and development
Understand family systems and 12345 12345 12345
family dynamics
Establish respectful reciprocal 12345 12345 12345
relationships with families
Use appropriate and effective active 12345 12345 12345
listening with families and other
professionals
Facilitate families’ identification of 12345 12345 12345
concerns, priorities, and resources
 Sass-Lehrer et al.  27

Table 1.3  Example of Using the Knowledge and Skills Document to Guide

Professional Learning

Competency Area: Family-Centered Practice: Family–Professional

Partnerships, Decision Making, and Family Support
Sample Student Learning Learning Assessment of
Competency Outcome Strategies Student Learning
Outcome

Understanding Describe family Presentation Using an

family supports and on family ecological
systems resources systems systems
and family using family and family framework
dynamics systems dynamics; describe your
theory family own family
studies systems and
illustrate the
micro, meso,
exo, and macro
systems

Early Intervention Research

Program directors might use the document to identify and verify effec-
tive practices based on the competency areas. For example, early inter-
vention program administrators may want to learn more about families’
perceptions of their collaboration with professionals in the development
and implementation of the IFSP. Selected areas from the document might
be identified to investigate the effectiveness of different approaches used
to maximize family collaboration and engagement.

Policy
IDEA Part C describes minimal qualifications for early intervention
specialists in the United States, but does not address the knowledge and
skills that are unique to providers working with infants and toddlers
who are deaf or hard of hearing and their families. Certification require-
ments for these early interventionists vary from state to state and are
rarely comprehensive. A survey of 45 states plus the District of Columbia
28  Early Intervention Knowledge and Skills of Professionals

in the United States revealed that the following competency areas were
frequently missing from their lists of knowledge and skills essential for
early intervention professionals who work with deaf and hard-of-hearing
children in their states: (1) language acquisition, especially ASL and sign
systems; (2)  family-centered practices; (3)  planning and implementing
services; (4)  collaboration and interdisciplinary practices; (5)  profes-
sional behaviors and ethics; (6) technology: auditory, visual, and tactile;
and (7) social, cultural, and linguistic diversity (Sass-Lehrer et al., 2010).
The Knowledge and Skills document could provide a starting point for
the development of a specialized credential for early intervention provid-
ers of deaf or hard-of-hearing children.

SUMMARY

Professionals working with infants who are deaf or hard of hearing need
specialized knowledge and skills that go beyond those required of early
childhood specialists who work with other special populations. In addi-
tion, most preservice professional programs and professional learning
opportunities fall short of meeting the needs of these specialists. The
gaps in knowledge and skills of early intervention professionals vary not
only by the academic discipline in which the professional received train-
ing, but also by the quality of their field experiences.
State directors, such as Dr. Smith, who are responsible for the quality
of services in their States, need to consider providing targeted support
and training to ensure that their providers have the skills they need. The
Knowledge and Skills of Early Intervention Providers (JCIH, 2013)  lists
competencies that were derived from eight position statements and
technical reports and can be used as a guide for training. These compe-
tencies are supported by research and expert opinion and are endorsed
by related professional organizations. Table 1.1 Specialized Knowledge,
Skill Sets, and Dispositions for Professionals Working with Infants Who
Are Deaf or Hard of Hearing elaborates on each of the nine competency
areas and extends these to describe the unique expertise required of spe-
cialists who work with this population.
 Sass-Lehrer et al.  29

This text is organized based on the knowledge, skills, and disposi-

tions discussed in this chapter. Each ensuing chapter identifies the
broad competency areas addressed and provides evidence-based in-
formation to support the professional learning and development of
early intervention specialists. Chapter 2 describes components of ef-
fective professional learning for professional development specialists
and early intervention professionals. The design, implementation,
and evaluation of professional learning are essential to the provision
of the best possible services for deaf or hard-of-hearing infants and
toddlers and their families. Subsequent chapters of this book provide
the reader with in depth understanding of the expertise required of
professionals to support optimal outcomes for all infants and toddlers
who are deaf or hard of hearing and their families.
Acknowledgments: We would like to acknowledge Karen Clark, Nicole
Hutchinson, and Kimberly (Tarasenko) Leong for their contributions to the
development of The Knowledge and Skills of Early Intervention Providers
(JCIH, 2013).

SUGGESTED ACTIVITIES

1. Refer to the Knowledge and Skills of Early Intervention Providers, in the

Supplement to the 2007 JCIH Position Statement, Appendix 1 (2013).
Go to http://pediatrics.aappublications.org/content/131/4/e1324.full.
Select one of the nine competency areas and rate each of the state-
ments under that area according to (1) the importance of this knowledge,
skill, or disposition to your work; (2) your competence in this area; and
(3) its value for your professional development. Then describe what this
self-assessment tells you about your needs for professional learning.
2. Review the 10 principles from the Best practices in family-centered early
intervention for children who are deaf or hard of hearing: An international
consensus statement (Moeller et al., 2013). http://jdsde.oxfordjournals.
org/content/18/4/429.full.pdf+html.
In what areas do you think you could improve your expertise?
3. Select one of the nine competency areas in the Knowledge and Skills of
Early Intervention Providers (JCIH, 2013). Do a web search to find good evi-
dence (research, professional opinion, or family experience) that supports
30  Early Intervention Knowledge and Skills of Professionals

three of the statements in this competency area. Summarize the evidence

you found and present this to your colleagues.
4. Visit the websites from the following organizations: (1) Alexander Graham
Bell Association for the Deaf and Hard of Hearing, (2) American Speech-
Language and Hearing Association, (3) National Association of the Deaf,
and (4) Conference of Educational Administrators of Schools and Programs
for the Deaf. Identify commonalities and differences in their statements
regarding the knowledge and skills of early intervention specialists.

RECOMMENDED RESOURCES

1. American Speech-Language and Hearing Association, Core Knowledge and

Skills in Early Intervention Speech Language Pathology Practice (2008).
http://www.asha.org/policy/KS2008-00292.htm.
This document includes the knowledge and skills as well as roles and
guiding principles for speech-language pathologists working with
infants, toddlers, and their families.
2. American Speech-Language and Hearing Association and the Council on
Education of the Deaf (2008), Service Provision to Children Who Are Deaf
and Hard of Hearing, Birth to 36 Months. http://www.asha.org/policy/
TR2008-00301/.
This technical report was developed by the Joint Committee of ASHA and
CED. The report addresses critical issues in the provision of quality
services including newborn hearing screening, family involvement, and
interdisciplinary collaboration.
3. Conference of Educational Administrators of Schools and Programs for
the Deaf, Position on Early Intervention Programs for Children with Hearing
Loss (2006). http://www.ceasd.org/acrobat/CEASD_EHDI.pdf.
This organization of educational leaders has a position statement on early
intervention programs that includes the organization’s recommenda-
tions for early intervention programming and qualifications of providers.
4. Division for Early Childhood (DEC) Personnel Standards for Early Education
and Early Intervention (Division for Early Childhood, 2014).
DEC, a division of the Council for Exceptional Children, promotes poli-
cies and disseminates evidence-based knowledge to promote optimal
outcomes for young children with special developmental and learning
 Sass-Lehrer et al.  31

needs and their families. The DEC position statement includes key
concepts guiding the preparation of early intervention specialists and
recommendations for state licensure of these professionals. http://
www.dec-sped.org/recommendedpractices.
5. Division for Early Childhood Code of Ethics (2009). www.dec-sped.org/
papers.
DEC’s Code of Ethics includes principles and practices to guide early
intervention programs and providers. The statement addresses pro-
fessional conduct, professionals’ dilemmas in research and practice,
and a commitment to ethical and evidence-based practice.
6. Early Childhood Technical Assistance Center (ECTA). http://www.ectacen-
ter.org/eco/.
The Early Childhood Technical Assistance Center, is funded by the Office
of Special Education in the United States. ECTA assists states in the
implementation of systems for the evaluation of child and family out-
comes in early intervention and early childhood programs.
7. National Association for the Education of Young Children (NAEYC), Position
Statements. www.naeyc.org/positionstatements.
NAEYC has position statements on topics including early childhood prac-
tice, policy, and professional development. NAEYC standards and
guidelines address anti-discrimination, code of ethical conduct, devel-
opmentally appropriate practice, early childhood program standards,
and standards for professional preparation.
8. National Association of the Deaf (NAD), Position Statement on

Early Hearing Detection and Intervention. http://www.nad.org/
issues/early-intervention/position-statement-early-hearing-detection-
and-intervention.
NAD is an organization in the United States by and for individuals who are
deaf or hard or hearing. The position statement of the NAD endorses
a positive attitude toward individuals who are deaf or hard of hearing
and emphasizes the importance of providing services that include all
language and communication opportunities and appropriate cultural
and linguistic support for the child’s development.

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2 Developing and Sustaining Exemplary
Practice through Professional Learning 
Mary Ellen Nevins and Marilyn Sass-Lehrer

Davin is an 8-year alumna of a teacher education program that pre-

pares professionals to work with children who are deaf or hard of
hearing. Her K-12 certification supported her in her first position,
teaching kindergarten in a countywide program for children who
are deaf or hard of hearing. While employed there, Davin attended
school-sponsored inservice workshops for topics such as behavior
management, autism spectrum disorder, assessments, and, most
recently, the new districtwide math curriculum. In addition, she
attended her state’s biannual conference for teachers of children who
are deaf or hard of hearing.
After a recent move to another state with her family, Davin applied
for a position as an early intervention specialist in the infant pro-
gram in her county. She was the only professional with a background
in working with children who are deaf or hard of hearing and was
awarded the position despite her inexperience in working with fami-
lies of very young children. Given an urgent need to get “up to speed”
to do her best in that position, Davin wondered about the options
for managing her personal learning journey so that she might work

37
38  Exemplary Practice Through Professional Learning

effectively with infants and toddlers and their families. Once she
enhances her dispositions, skills, and knowledge for working with very
young children, how might she sustain her new practice?

GUIDING QUESTIONS

1. What is exemplary practice for early interventionists working with infants

and toddlers who are deaf of hard of hearing and how does an interven-
tionist become a competent provider?
2. How do professionals develop a “learner first” posture to develop and
sustain their career journey?
3.
How can professionals leverage digital tools to acquire the
twenty-first-century skills of communication, collaboration, creativity, and
critical thinking, in an effort to develop these same skills in the children
with whom they will work?
4. What is the role of the mentor/coach, either expert or peer, in guiding
professionals to exemplary practice?

COMPETENCIES ADDRESSED IN THIS CHAPTER

1. Collaboration and Interdisciplinary Models and Practices

2. Professional and Ethical Behavior: Fundamentals of early intervention prac-
tice, legislation, policies, and research

INTRODUCTION

This chapter will define exemplary practice for all early intervention pro-
fessionals and provide a description of the stages of developing compe-
tence. It will furnish an overview of professional learning and types of
professional learning opportunities available today. Implications of adult
learning and research on brain-compatible strategies will be considered
in a review of face-to-face, online, and blended/hybrid models of profes-
sional learning. The chapter will also offer a discussion of the digital tools
 Nevins and Sass-Lehrer  39

that support twenty-first century professional learning and close with a

discussion of essential features of mentoring and coaching as part of a
continuum of professional learning experiences.
Professional learning is a shared responsibility involving individual
professionals, school and district leaders, education agencies, higher
education, federal government, and educational organizations (Killion,
2012). This chapter has value not only for professionals engaged in devel-
oping and sustaining exemplary practice, but also for the supervisors
and administrators responsible for providing and overseeing their con-
tinuing education. Individuals who lead professional learning experi-
ences whether in a college classroom or online course, or serving as a
mentor in an in-person or remote capacity, are encouraged to examine
their own practices in light of the exemplary practices described in this
chapter. With careful attention to the principles suggested here, profes-
sionals providing these learning experiences can determine whether
they are implementing practices that best meet the needs of today’s
aspiring learners.
For professional practice in early intervention for infants and toddlers
who are deaf or hard of hearing and their families to be deemed exem-
plary, two important components must be present. The first component
entails the general dispositions, skill sets, and knowledge base of all com-
petent early intervention providers:

• infant and toddler development and assessment

• family-centered practice
• cultural knowledge and sensitivity
• interdisciplinary collaboration
• effective communication
• legislation, policies, and procedures
• professional and ethical behaviors

Regardless of the unique needs of the child and family, these essential
elements undergird a breadth of dispositions, skills, and knowledge that
transcend individual accommodations for a child and family. The second
aspect of exemplary practice for professionals working with families of
children who are deaf or hard of hearing acknowledges the dispositions,
40  Exemplary Practice Through Professional Learning

skills, and knowledge associated with working with this specialty, infants
and toddlers who are deaf or hard of hearing:

• identification and assessment of hearing levels and implications for

programming and services
• assistive technology(ies) for people who are deaf or hard of hearing,
auditory and visual
• support and resources for families with deaf or hard-of-hearing chil-
dren and professionals
• legislation, policies, and best practice recommendations for children
who are deaf or hard of hearing
• Deaf Communities and Deaf Culturea
• deaf and hard-of-hearing Listening and Spoken Language
communities
• language and communication expertise in the language(s) and
modalities used by people who are deaf or hard of hearing
• child–family communication effectiveness
• developmental assessment for infants and toddlers who are deaf or
hard of hearing
• programming and services for infants and toddlers who are deaf or
hard of hearing and those with disabilities and their families

Chapter 1, What Every Early Intervention Professional Should Know, lists

the general competency areas needed to work with infants, toddlers, and
their families as well as the specialty skills needed to work with infants
and toddlers who are deaf or hard of hearing. Table 1.1 in Chapter 1 pro-
vides specific examples of dispositions, knowledge, and skills relevant
to each competency area and how the competency area is applied when
working with families and young deaf or hard-of-hearing children.
In addition to these two essential sets of competencies for early inter-
vention practice, professionals should also be mindful of the fact that
today’s infants and toddlers are tomorrow’s school-aged children. As
such, professionals are charged with developing the twenty-first century

Deaf used with an upper case “D” refers to people who consider themselves culturally Deaf or
a

who identify with the Deaf Community.

 Nevins and Sass-Lehrer  41

skills that will be required for success in home and school, postsecond-
ary education, college, and careers. These skills include communication,
critical thinking, creativity, and collaboration. It is incumbent upon the
early intervention professional to envision what lies ahead for each infant
and toddler who is deaf or hard of hearing as the journey begins. With
this long-term perspective, professionals can assist families in jump start-
ing children’s acquisition of the valuable skills they need for their future
learning and later in the workplace.

DEVELOPING AND SUSTAINING EXEMPLARY PRACTICE

Given the components of exemplary practice for professionals working

with families of children who are deaf or hard of hearing, it is vital that all
professionals engage in honest self-assessment of their dispositions, skills,
and knowledge as they begin their professional career and then periodi-
cally throughout their career journey. Although Davin may have expert
competence with regard to teaching primary-aged children who are deaf
or hard of hearing, she will need to learn more about infants and toddlers
and working with families before she can effectively provide quality ser-
vice. She must ask herself the questions: what do I need to know and what
do I need to be able to do? As recommended in Chapter 1, Davin might
first assess her current dispositions, skills, and knowledge as driven by
the document published in Appendix 1 to the Supplement to the 2007
Position Statement: Principles and Guidelines for Early Intervention after
Confirmation That a Child Is Deaf or Hard of Hearing [Joint Committee
on Infant Hearing (JCIH), 2013]. The Knowledge and Skills of Early
Intervention Providers for Children Who Are Deaf or Hard of Hearing and
Their Families document includes the general competency areas provid-
ers should have to deliver comprehensive early developmental services.
Table 1.2 in Chapter 1 provides an example of how these competencies
can be used as a self-assessment tool. Armed with that self-analysis,
Davin can identify her learning needs; once identified, she can plan a
professional learning agenda that fits her own personal learning style,
leverages today’s digital tools, and creates a path toward competence and
42  Exemplary Practice Through Professional Learning

5. Evaluate change
in practice; collect
and analyze data 1. Self assess
on change in child/
family outcomes

2. Identify need
4. Engage and
learn

3. Become
connected; seek
& select formal
and informal
learning
experiences

Figure 2.1  Personal Learning Agenda Planning Process.

exemplary practice in working with infants and toddlers and their fami-
lies. Figure 2.1, Personal Learning Agenda Planning Process, may assist in
conceptualizing the process for Davin’s professional learning.
In following this process, Davin identifies infant and toddler develop-
ment and coaching families as areas for immediate learning. With this
goal in mind, she begins to prepare for her new position before she is
even assigned her first family.

DEVELOPING A PERSONAL LEARNING AGENDA

Luckily, for Davin, there has never been a more exciting time than today
to engage in professional learning. The growing intersection of tech-
nology and collaboration has given rise to a movement of “Connected
Learning Communities” (Nussbaum-Beach & Hall, 2012). This new di-
rection advocates a learner first attitude and a three-pronged approach
to continuous professional learning. A learner first attitude suggests that
 Nevins and Sass-Lehrer  43

professionals take responsibility for their own learning and become less
dependent on others to create opportunities for them to develop pro-
fessionally. This can be accomplished, in part, by the active engagement
in Connected Learning Communities. These comprise Professional
Learning Communities (PLCs), Personal Learning Networks (PLNs),
and Communities of Practice (CoPs). These offer the kind of experiences
that contribute to developing (and sustaining) the exemplary practice
suggested above.

Professional Learning Communities (PLCs)

In the model of Nussbaum-Beach and Hall (2012), Professional Learning
Communities are often the face-to-face colleagues at a workplace who
collaborate for the purpose of realizing better outcomes for their con-
stituencies. Each individual member of the PLC is self-empowered but,
at the same time, is committed to the common goals of the community.
According to the authors

Professional learning communities are about continuous improve-

ment, shared leadership and [school] reform. High functioning
professional learning communities engage in collective and con-
tinuous inquiry, participate in thoughtful conversations about
their professional learning, devise strategies to improve instruc-
tion, act on what they have created and reflect together. (p. 29)

Thus, Davin’s new colleagues at her agency make up the members of

her professional learning community in the same way that schools are
referenced above. The excerpt above is empowering and at the same
time suggests a personal responsibility in pursuit of excellence within
the PLC. In many cases, the PLC will be interdisciplinary; educators,
speech-language pathologists, audiologists, physical and occupational
therapists, social workers, counselors, and others will be part of a vibrant,
face-to-face (F2F) learning group. In some circumstances, early inter-
vention service providers have no F2F community. Their professional
interdisciplinary community must be virtual. The increasing connectiv-
ity of the workforce is supported by increasingly powerful digital tools
(detailed in a subsequent section of this chapter) and makes it possible
44  Exemplary Practice Through Professional Learning

to develop deep and collegial relationships that build community even

when there is no physical interaction.

Personal Learning Networks (PLNs)

A second prong of the Connected Educator model details the creation
of PLNs, “which … are about individuals gathering information and
sharing resources (offered by other professionals who become part of
one’s network) that enhance their personal and professional learning”
(Nussbaum-Beach & Hall, 2012, p.  31). PLNs may include profession-
als coming together to discuss a particular issue at a workshop or other
forum, or connecting virtually, online. The authors caution that in order
to do this effectively, an individual must have sufficient knowledge of the
digital tools available and, at the same time, have access to trustworthy
resources. For the early interventionist, the beauty of the PLN is that
although it includes professionals traditionally considered part of the
interdisciplinary team, it may reach well beyond the field of working with
children who are deaf or hard of hearing and their families. Any individ-
ual’s PLN is customized to areas of interest and scope of practice and, for
early interventionists, may include resources and experts in fields such
as health literacy, behavior change, and systems administration, to name
just a few. The development of a Personal Learning Network takes time
and a commitment to the judicious exploitation of the virtual opportu-
nities to connect with others that abound on the web; the promise of its
power makes it a compelling undertaking for any professional interested
in both personal and professional growth in this twenty-first century.

Communities of Practice (CoPs)
Communities of Practice, the third component of the Connected
Learning Communities model, form for the purpose of enabling pro-
fessionals within the community to become increasingly more effec-
tive at their craft. In addition, CoPs may focus on a particular area of
interest; for early interventionists this may mean a focus on the delivery
of services through telepractice, learning about early brain development,
or the effects of “toxic stress” on development. Like Personal Learning
 Nevins and Sass-Lehrer  45

Networks, CoPs, are likely to have more of a virtual than physical pres-
ence and seek to elicit the collective wisdom of its members for solv-
ing real problems of practice. CoPs operate on the belief that assembling
group knowledge leads to developing individual knowledge employing a
“none of us is as good as all of us mentality” (Nussbaum-Beach & Hall,
2012, p. 33). Becoming a good citizen of a CoP requires active engagement
and contribution, with the tacit understanding that whatever is learned
is shared with your Professional Learning Community and the Personal
Learning Network as well.
Dynamic participation in these three types of connected learning expe-
riences will no doubt contribute to growing competence in any one of a
number of skill sets in a host of domains. But how will Davin build these
networks and know that she is improving her competence as an early
intervention professional? Davin might find it helpful to consider the
stages of developing competence as she journeys from novice to expert
in a specific knowledge area and skill set. The discussion of competence
that follows describes the general, outward signs of competence, but also
provides context for application to the early intervention professional.

Exploring Competence
As a performance-based phenomena, competence is a situationally
influenced manifestation of one’s craft (Howell, 1982). Thus, having
identified a substantial number of competencies required of an early
intervention specialist for infants and toddlers who are deaf or hard of
hearing and their families in Chapter 1, What Every Early Intervention
Professional Should Know, we create a link between competencies and
becoming a competent professional. In an attempt to define the word
competence, Daniel Goleman (1981) has indicated that competen-
cies should not be delineated as aspects of a given job, but as special
characteristics of those who do the job best. This suggests perhaps
that in contrast to widespread practice, the descriptor “minimal” as
in “minimal competencies” should never be applied to the delinea-
tion of competence or competencies in employment requirements for
early interventionists. Furthermore, it must be acknowledged that in
46  Exemplary Practice Through Professional Learning

the development of competencies, each family that the early interven-

tionist meets creates a unique opportunity to learn anew, to co-learn
with families, and to develop family-specific skills as dictated by a dis-
tinct presenting profile. According to Hanft, Rush, and Shelden (2004)
there is always something new to learn in supporting families “in ordi-
nary and extraordinary life situations” (p. XII). These experiences are
added to the ever-growing skill set and further expand the competen-
cies of the practicing professional.
There are recognized levels of competence in every field of endeavor.
A general understanding of these established levels may inform an indi-
vidual’s journey from novice to expert, especially with regard to an early
intervention specialist. Professionals should note that levels of compe-
tence at a given time in the career journey will vary; as innovative prac-
tices are identified, the process of new learning, skill acquisition, and
experience accrual begins once again. The identification of points of per-
sonal competence across a range of competencies is the outcome of the
self-assessment referenced earlier.

Unconscious Incompetence (Howell, 1982)

At the level of Unconscious Incompetence, an individual may be ob-
jectively judged as executing tasks poorly but, unfortunately, is una-
ware of inept performance. This blissful condition of the unconsciously
incompetent worker is the source of grave concern to co-workers
and supervisors for there is no motivation for the individual to make
improvements or seek continuing education for building knowledge
and skills. Without a disposition to enhance a professional career jour-
ney through continuing education, service providers at this level may
actually do more harm than good. This has serious implications for
professionals working with young deaf or hard-of-hearing infants and
toddlers and their families at a time of critical importance for qual-
ity support. General early interventionists or developmental therapists
who are unaware of the unique communication needs of children who
are deaf or hard of hearing and their families may be representative of a
segment of this level of (in)competence.
 Nevins and Sass-Lehrer  47

Conscious Incompetence
Along the continuum of competence, Howell’s second level, Conscious
Incompetence, represents the point at which “ignorant bliss” withers
and you become aware that actions are not achieving the desired results.
Recognition of this disconnect is an important career journey milestone
for many; it often creates the dissonance from which action to make
improvements will follow. In essence, once incompetence is acknowl-
edged, the quest to dispel its negative effect on the psyche is compelling.
Most workers, regardless of their specialty field, cannot help but seek the
professional education that will make their work more effective. With
regard to her own knowledge and skills, Davin’s self-assessment helped
identify her Conscious Incompetence in the areas of infant and toddler
development as well as in a coaching model of intervention with families.
By identifying these two areas of incompetence Davin acknowledged an
immediate need to address these limitations to assist her movement to
the next level of competence.

Conscious Competence
At the level of Conscious Competence, an individual executes tasks with
real understanding. An analytic perspective frames the work and “in the
moment” assessment of actions and results is possible. Flexibility and
judicious decision making develop as a result of increasing experience
and allow for more effective ways of providing services. Planning and
simulation (e.g., rehearsal, practice, or role playing) ensure smooth
implementation of the tasks of any work. Conscious competence rep-
resents a solid performance of craft; the service provider is capable,
knowledgeable, and skilled. The early intervention professional who is
Consciously Competent actively plans and rehearses in order to have
quality exchanges with families and young children and meaningful and
collaborative conversations with colleagues. When Davin reaches this
level of competence, her intervention sessions will run smoothly because
she will have thoughtfully planned for and practiced the activities she
plans to share with the family. Davin will prepare for her family session
by first meeting with a colleague who has agreed to work with her. In
48  Exemplary Practice Through Professional Learning

preparation for the meeting with her colleague, Davin will identify the
key messages she would like to communicate to the family. Roleplaying
her family coaching conversations with her colleague will help to ensure
that the messages she hopes to communicate will be clear.

Unconscious Competence
Whereas Conscious Competence requires mental effort and vigilance to
maintain quality performance, Unconscious Competence, on the other
hand, represents a level of operation that is virtually “automatic.” A vast
store of experiences enhances the skills and knowledge of the practitio-
ner such that a “big picture” view surrounds every exchange by an expert
provider. With an experience-rich perspective, attention is freed to be
responsive to the unique details of any given situation; data are inter-
preted without conscious deliberation. Unconsciously competent provid-
ers are expert practitioners in their respective domains, yet they are easily
able to revert to more conscious and analytic performance as required
by novel situations and demands for new content learning or proce-
dural innovation. This is especially apparent when an early intervention
expert takes a learner first posture to embed newly adopted standards or
advanced technological tools into “state of the art” service delivery for the
families and children with whom he or she works.

Conscious Unconscious Competence

Not every expert practitioner functioning at the level of Unconscious
Competence aspires to or reaches the level of Conscious Unconscious
Competence (Pike, 2003). The individual operating at this masterful level
of competence dissects his or her own expertise, taking the now auto-
matic and reflexive dispositions, skills, and knowledge to analyze and
distill into their essence. In so doing, the master is able to guide and,
importantly, take the learner perspective of an individual currently op-
erating at a lower level of competence. Overcoming “the curse of knowl-
edge” barrier (Heath & Heath, 2007), individuals at the level of Conscious
Unconscious Competence can, despite its difficulty, call to mind what it is
like to lack that knowledge, skill, or disposition. These individuals, then,
 Nevins and Sass-Lehrer  49

become the most effective instructors or coaches because of the reflective

analysis of their own craft and the power to identify and narrate the steps
to achieving high levels of competence. Early intervention professionals
who function at this level of competence model the behaviors of exem-
plary practice and push its limits to new frontiers. Davin will look for
someone at this level to be her mentor/coach.
Movement along a continuum of competence within any given aspect
of practice is the result of the development and refinement of core dispo-
sitions, the ongoing acquisition of necessary skills, the constant expan-
sion of a pertinent knowledge base, and the never-ending accrual of a
store of varied and relevant experiences. In embracing a learner-first pos-
ture to seek competence, a vibrant career journey is fueled by powerful
professional learning experiences.

PROFESSIONAL LEARNING

The purpose of all professional learning activities in early intervention

is the ultimate improvement in infant or toddler and family outcomes.
Thus, continuing education is not an end in and of itself, but only a
means to an end. As stated earlier, contemporary professional learning
experiences reinforce a “connected learner approach” that recognizes
that although some knowledge for practice is necessary, knowledge in
practice and knowledge of practice provide the most comprehensive
opportunity to learn deeply (Cochran-Smith & Lytle, 1999). Although
some of Davin’s learning journey will include independent knowledge
building, she will want to take full advantage of her learning networks
and communities that will allow her to reflect, share with others, and
obtain feedback on both her new learning and practice.
Activities or experiences that may be considered professional learning
include both formal and informal opportunities. Informal opportuni-
ties are defined as being more learner driven (e.g., participating in a web
chat, perusing resources suggested by someone in a Personal Learning
Network) and are contrasted with those formal experiences that are
more traditional and structured (e.g., attending a workshop, or taking
50  Exemplary Practice Through Professional Learning

an online course). Depending upon your learning goal and strategy for
participating each can be a productive professional learning experience.

Online Learning
The number of online learning opportunities is increasing rapidly.
Universities, professional organizations, and state-wide early interven-
tion collaboratives have initiated online degree and certificate programs
as well as individual course offerings and learning modules. In addition,
there is an abundance of information and resources available through
professional organizations and networks that provide online learning
opportunities. (See Recommended Resources at the end of this chapter
for examples of the types of online learning opportunities of interest to
early intervention professionals.)
Anxious to begin the process, Davin might choose to initiate her
learning journey by pursuing some informal opportunities that are im-
mediately available to her rather than wait for a regional conference on
infant–toddler development that is still 6  months away. Because she
identified infant–toddler development as one of her urgent knowledge
needs, she starts with an online search on national standards for early
learning and explores a number of websites for organizations dedi-
cated to the birth to 3  years age group. Davin’s first effort brings her
to the website of Zero to Three (see Recommended Resources) where
she spends a great deal of time following links within the Behavior and
Development tab. On a return visit to the website the following day, she
learns that although there are no national standards for infant and tod-
dler development, a document entitled Early Learning Guidelines for
Infants and Toddlers: Recommendations for States is available for her
review. This document, in turn, provides links to those states that have
developed standards; she finds that her state has a comprehensive docu-
ment for providers and follows the link. Thus, Davin’s knowledge build-
ing commences.

Personal Knowledge Management (PKM)

Recognition of the staggering figures regarding the pace of knowl-
edge development [e.g., it has been suggested that medical knowledge
 Nevins and Sass-Lehrer  51

is doubling every 8 years (Carroll, 2011)] begs the question, “How can
one keep pace with all that there is to know in any field?” One potential
approach to this daunting task calls for the development of a system of
Personal Knowledge Management or PKM (Jarche, 2013). According to
Jarche, “Personal knowledge management is a set of processes, individu-
ally constructed, to help each of us make sense of our world and work
more effectively” (p. 2). In Jarche’s Seek-Sense-Share construct, individuals
seek out the information they need to inform their work. Bits of informa-
tion are accumulated from trusted sources, and individuals capture this
knowledge for consumption. Jarche then advises purposeful reflection, or
the sense component of this model. Here knowledge is put into practice
for application; “experimentation” with the new knowledge encourages
deeper learning. The final phase of this three-part model is the critical
share element. As part of the process, collaborating with colleagues for
the purpose of exchanging ideas helps to strengthen the ownership of the
knowledge. It is in this retelling that the social implications of knowledge
building become obvious; shared ideas can be expanded, challenged, or
improved upon in conversations between and among colleagues. Davin
might consider exploring the utility of a PKM approach within her new
professional learning community to support her career journey. She
might, for example, come across a study that explores natural learning
environments in early intervention practice (Dunst, Bruder, Trivette, &
Hamby, 2006). After reading the article, she begins to think about her
own understanding of the role of everyday activities and the natural envi-
ronment. Davin decides that she needs to refine her understanding of the
practices in place at her agency; she forwards information about the study
to her colleagues. By the time of the next staffing, the topic has found its
way onto the agenda and a deep conversation about practices ensues. In
exemplifying a PKM approach to new learning, Davin not only acquires
new personal knowledge, but also benefits from the discussion with col-
leagues from different disciplinary backgrounds that adds to the diversity
of ideas surrounding the team’s practice. As a byproduct, the early inter-
vention program where Davin works takes the opportunity to codify its
practices for developing intervention plans; session outcomes for fami-
lies improve overall as professionals operationalize their natural learning
52  Exemplary Practice Through Professional Learning

environment practices. How does this scenario become the rule, rather
than the exception? And what about an early interventionist who func-
tions as an independent contractor with limited face-to-face interaction
with colleagues? Solutions lie in the creation of a digital footprint that
allows access to a new kind of professional learning.

DIGITAL TOOLS THAT SUPPORT PROFESSIONAL LEARNING

Without a doubt, failure to harness available digital tools to improve prac-

tices in the workplace through continuous professional learning is short
sighted in this twenty-first century. From the use of tools to assist with
archiving learning artifacts, to document-sharing tools for cloud-based
collaboration, to social media sites that facilitate connecting with col-
leagues, technology has radically changed the landscape of professional
education. The sheer number of choices for internet-enabled opportuni-
ties might suggest that there is something for everybody, even for those
professionals who have yet to consider the possibilities. All that is needed
is a firm resolve to commit time to explore, select, and then implement
those tools that will enhance a professional learning routine.
In the same manner that professional learning is a means to improv-
ing child and family outcomes and not an end in itself, so too are
digital tools a means to professional learning, not ends in themselves
(Nussbaum-Beach & Hall, 2012). Professionals are cautioned to be well
aware of the ephemeral nature of digital tools and consider that today’s
preferred tool might be obsolete tomorrow given the lightning pace of
innovation in this arena. One practical way to stay abreast of the most
useful digital tools is to refer to an annual poll of the top 100 Tools for
Learning as offered each year for the past 7 years (Hart, 2014). Twitter
remains at the top of Hart’s list for 2014 as a social networking and microb-
logging service; it currently wields great potential for professional learn-
ing. Whether used to “follow” individuals or a topical group through
the use of a hashtag, Twitter can broaden the professional learning net-
work from the desktop computer or mobile phone. Davin’s first use of
Twitter was for social and consumer-related purposes. She has recently
 Nevins and Sass-Lehrer  53

begun to follow Ellen Galinsky (@ellengalinsky), noted author of Mind

in the Making, @toosmalltofail, a partnership between the Bill, Hillary,
and Chelsea Clinton Foundation and Next Generation, to improve the
health and well-being of children ages birth to 5 years. She also follows
@AGBellAssoc, a group that addresses listening and spoken language
opportunities for deaf and hard-of-hearing children, and @VL2Science,
the Visual Language and Visual Learning Center at Gallaudet University.
She finds that starting each morning with a quick look at her Twitter
account (as organized by TweetDeck) will often lead her to a resource
that she can then share with the families with whom she works and
with other professionals in her growing network. She is by no means an
expert user of this tool, but has made a personal commitment to con-
tinue to increase the number of professionals that she is following as
well as growing her own participation beyond simply being a lurking
consumer.
Another highly rated tool in Hart’s Top 100 list (number 2 for 2014) is
the use of Google Drive/Google Docs. Google Docs will automatically
save to the cloud any changes to a document as they occur. This has very
real practical implications for any collaborative work shared across many
contributors, be it a new set of procedures for early intervention sessions,
an updated agency contact list, or a group presentation for an upcoming
conference.

Face-to-Face (F2F) and In Person Learning

As a practical matter, Davin will continue her learner first posture when
attending formal, in person, conferences and workshops. Luckily, compel-
ling research about adult learning (Knowles, 1990)  and brain-compatible
learning strategies (Jensen, 2007; Tate, 2004)  has reshaped standards for
effective professional learning that is offered in face-to-face as well as online
formats. Of particular note for the contemporary adult learner are the 12
Principles of Adult Learning outlined by Vella (2002) that are still relevant
today. Heeding recommendations for (1) participation, the learner identi-
fies what is to be learned; (2) safety, the learner is willing to take risks in
new learning; (3) immediacy, the learning meets an imminent need of the
54  Exemplary Practice Through Professional Learning

learner; (4)  engagement, the learner is actively involved in creating

new meaning; and (5)  accountability, the learner reflects and assesses
new learning, today’s learning leaders design experiences that embrace
these principles. However, learners must balance knowledge acqui-
sition with skill development to avoid the inadvertent creation of a
“Knowing-Doing Gap” (Pfeffer & Sutton, 2000). This phenomenon is
by no means exclusively an education or early intervention one. In fact,
the term “knowing-doing gap” was coined by authors writing for the
Harvard Business School Press. The thrust of their book is an empha-
sis on the manner in which successful companies turn knowledge into
action; so too must professional learning experiences in early intervention
provide opportunities to connect knowledge to practice and mind its own
knowing-doing gap.
Beyond attention to adult learning models, recent research in neuro-
science of the brain has given rise to the study of how the brain learns
best. Brain-compatible learning strategies and techniques can be applied
to both children and adults; implications for the design of professional
learning experiences suggest attention to the procedural components of
learning such as attention span limits, input limitations, and set-aside
time for learning. Additionally, considerations for content and process
issues mandate attention to the identification of key principles, holistic
thinking, and an orientation to cooperative learning (Jensen, 2007).
Regardless of the design of a presentation and the skill set of its
presenter(s) there is always much to learn when professionals gather. One
blogger created a tip sheet for professionals headed to a recent sympo-
sium. She reminded her followers that attending a face-to-face learning
experience should be more than earning continuing education units
(CEUs) or a chance to get away (W. DeMoss, personal communication,
September 21, 2013). According to DeMoss, it is a short-term opportunity
to “up-level” or improve practice and connect with others. Davin might
consider these suggestions as she prepares to attend a regional confer-
ence on early learning. See Table 2.1, Tips for Getting the Most Out of the
Symposium Experience.
Today’s face-to-face professional learning should be practical, rel-
evant, and goal oriented. Effective professional learning facilitators will
 Nevins and Sass-Lehrer  55

Table 2.1  Tips for Getting the Most Out of the Symposium Experience

1. Choose to attend a Listen for new ideas and ways to approach the
session on a familiar subject. What has changed since you last
topic read about the topic? What opportunity do
you have to connect with this presenter in
order to continue a dialogue virtually after
the conference? Who do you know who
would love to get this information?
2. Choose to attend a How do you compare the new information to
session on a topic that what you already know? What is your take
is new or a challenge for away from the session? What is the one idea
you that you have to apply this to your practice
when you are home? Who are the thought
leaders in this area? How could you connect
with them to continue a dialogue virtually
after the conference?
3. Walk through the Focus on what’s new. Often exhibitors have
exhibit hall with a new demonstrations of new products. Watch and
set of eyes listen. Even if a product does not directly
apply to your practice, can you identify a
colleague who would appreciate the new
resource or contact information? Visit
the vendors that represent technologies
beneficial for infants or toddlers who are
deaf or hard of hearing or their families.
What do you need to know that would assist
you in guiding and coaching families to use
or maintain this equipment? Learn more
about the vendor’s website, customer service,
or troubleshooting guide. If you do not
know, ask who your regional representative
is so you can make a virtual connection
when you get home.
4. Exchange contact If you attend 10 sessions, that would be up to
information with 20 new professional contacts to connect
seatmates in each with virtually. Discover if they are on
session Facebook, LinkedIn, or Twitter.
5. Attend the general This is a great way to meet new professionals,
sessions and other learn from thought leaders, and get more
sponsored events involved.
56  Exemplary Practice Through Professional Learning

value the experiences that the adult learner brings and will allow for some
self-direction in navigating content and acquiring skills. More impor-
tantly, quality professional learning experiences respect the participant
and create a climate of partnership in learning within any community
gathered for the purpose of improving family and child outcomes.

COURSEWORK

Formal coursework as offered by a college or university in a “bricks and

mortar” location can no longer be the standard route to a degree or a cer-
tificate in early intervention for infants and toddlers who are deaf or hard
of hearing and their families. Practically speaking, the ease with which a
national (or international) cohort can be formed virtually for the purpose
of enhancing dispositions, skills, and knowledge in this specialty field
makes it an attractive alternative to full-time or even part-time study on
site. A number of online programs also require a F2F component, result-
ing in a blended or hybrid model. But not all coursework is taken for an
advanced degree, certificate, or license. Any number of discipline-specific
or discipline-related, credit-bearing classes from a recognized institution
of higher learning can add value to an individual’s professional competen-
cies without matriculation for a degree. Given the broad spectrum of com-
petencies identified for early interventionists working with infants and
toddlers who are deaf or hard of hearing and their families, it is plausible
that some knowledge acquisition can be supported by coursework in the
general domain. In fact, Davin recently decided to look online to explore
opportunities for professional learning that she can access from home.
She was disappointed that she could not find a free Massive Open Online
Course (MOOC) on sites such as Coursera, Udacity, and edX regarding
infants and toddlers, but did learn of an Infant Specialist Certificate pro-
gram at Erikson Institute in Chicago. After reviewing information from
Erikson as well as a number of other institutions, Davin is considering
taking her first online course, Infant/Toddler Screening and Assessment.
She will use her new position as a lens through which she can learn more
about the needs of this age group with whom she has only begun to work.
 Nevins and Sass-Lehrer  57

COACHING AND MENTORING

One of the richest professional learning experiences is the participation

in an effective mentor–mentee relationship. Mentoring is designed to
facilitate the transfer of knowledge, skills, attitudes, beliefs, and values
between an experienced and less experienced practitioner (Gallacher,
1995). Mentoring entails an interpersonal relationship in which the men-
tee receives both professional and personal benefits. On the other hand, a
coaching relationship is often instituted to support a learner who asks for
assistance, wants to acquire a new skill, desires help in solving a problem,
needs encouragement, or wants a new challenge (Hanft et al., 2004). The
process of providing coaching assistance mirrors the guiding relationship
between early interventionists and families; in the case of mentoring, the
relationship is professional–professional in nature. With a focus on ask-
ing, not telling, and a disposition of trust in developing competence, a
coaching relationship can be equally effective with novice professionals
or those on a path from “good to great.” As a newcomer to early interven-
tion, Davin is open to establishing a relationship with one of the more
experienced providers in her agency. She is sure that her inclination for
direct teaching will need some transformation in order to fully reflect
family-centered intervention practices. But before approaching a pro-
spective mentor or coach, Davin wants to be sure that she is clear about
the expectations for participating in such a partnership.

Characteristics and Attributes of Mentees and Learners

To receive full benefit from the mentor or coach experience, Davin must
call upon her disposition to assume personal responsibility for her own
growth and development. Once again, her authentic learner-first posture
will facilitate the creation of a coaching process that allows for

. . . non-judgemental interaction between the coaching partners,

reflection, and observation paired with feedback to prompt a
learner’s self discovery and acquire or refine new skills. (Hanft
et al., 2004, p. 18)
58  Exemplary Practice Through Professional Learning

In addition, there are also personal qualities of a learner that enhance

the development of an effective coaching relationship; these include flex-
ibility, enthusiasm, a positive attitude, and a willingness to take risks
(Gallacher, 1995). Davin believes she possesses these qualities but wants
to strengthen her ability to reflect, listen deeply, and participate in the
collaborative conversations that help change practice. She approaches
one of her colleagues who agrees to serve as her coach, but before agree-
ing to beginning this relationship, the prospective coach wants an assur-
ance from Davin that she will agree to videotape her sessions to enable
them to view sessions together. The coaching professional wants to be
sure that Davin will have the opportunity to observe and reflect on her
own practice, rather than limiting her learning to what is seen through
the perspective of her coach’s eyes.

Coaching Coaches
The key elements of the professional coaching process, observa-
tion, action, and reflection, are the very same as those required of
the learner when serving as a coach working with families and their
infant or toddler who is deaf or hard of hearing. After the process is
initiated and ground rules are set, the observation phase begins. This
may take any one of a number of forms. The coach may observe the
learner; the learner may observe the coach demonstrating a particular
skill or action; the learner may engage in a self-observation; and/or
the learner and coach together may observe the child and family inter-
acting (Hanft et al., 2004). This observation phase generates the data
that then drive the coaching conversations. The purpose of coaching
conversations is to offer meaningful feedback; serendipitously, it offers
the learner an opportunity to be on the other end of the coaching con-
versation, obtaining a perspective of how families might feel on that
side of the exchange.
The action phase of the coaching process refers to the events of a ses-
sion, or a simulation or role play of a session, that have been targeted for
the application of some particular act, behavior, or skill. Modeling by a
coach or actual practice of a new strategy by a learner are two possible
 Nevins and Sass-Lehrer  59

elements of this phase of the process. These, too, are supported by the
coaching conversations that precede and/or follow the action.
When the learner and coach analyze the action components through
reflective conversations, a particular episode of the coaching process
is completed. The conversational dance played out here begins with
self-analysis on the part of the learner as driven by probing questions
asked by the coach. Again, according to Hanft et al. (2004), feedback

.  .  . should always follow reflection by the learner as the coach’s

intent is to learn what the coaching partner’s insights, ideas, and
reflections are before the coach provides his or her own. (p. 48)

Providing meaningful feedback to a learner is a skill set all its own.

Most professionals will agree that negative feedback that is direct and
communicates what is wrong ends up alienating the learner, rather than
encouraging the learner to develop better practices. On the other hand,
conciliatory feedback (Perkins, 2003)  offers positive but vague com-
mentary. Although it avoids conflict and values the relationship over
the message, it may be perceived as superficial and evasive by its recipi-
ents. A third type of feedback, communicative feedback (Perkins, 2003),
employs a three-step process for its authentic use. First, the coach asks
clarifying questions for understanding, for example, “Which of the two
strategies did you see the families respond to more enthusiastically?”
The second step calls for the expression of a specific value statement, for
example, “Your thoughtful design of the dressing routine experience
added value to the session today.” The third and final step offers a reflec-
tive question or statement and invites a thoughtful response from the
learner, for example, “What do you think might have happened if dad
were in the session with mom today?” Thus, communicative feedback
allows for a true conversation between coach and learner. It might be
suggested that the ability to become your own coach can be encouraged
through a gradual release of responsibility of framing the prompts from
the coach to the learner. The ultimate goal of the process is to empower
the interventionist to be a self-reflective practitioner, capable of observ-
ing and refining the dispositions and skill set that contribute to exem-
plary practice.
60  Exemplary Practice Through Professional Learning

Peer Mentoring or Coaching

There is always value in collaborating with a colleague to improve prac-
tice. When professionals team for the purpose of embedding knowledge
and skills into practice, collaborative coaching relationships can emerge.
In much the same way that a Professional Learning Community forms
to advance practice, peer coaching extends the clear focus of learning to
the development of observable skills. Critical ingredients for successful
peer coaching initiatives include voluntary participation, mutual re-
spect, and nonjudgmental support (Hanft et  al., 2004). Peer coaching
requires administrative support, time, and flexibility of staff to yield pos-
itive results. Peer coaching should be considered a high impact profes-
sional learning experience for early interventionists as they develop and
sustain exemplary practice.

LOOKING BACK AND PLANNING AHEAD

After 1 year in her new position, Davin reflects on her learning journey.
She now has a better understanding of infant and toddler development,
and often refers to the developmental checklists she found online. Her
attendance at a regional conference on early development yielded some
professional contacts, both experts and peers. She now follows two of
the presenters on Twitter and Skypes regularly with another early in-
terventionist from the western part of the state who also works with
infants and toddlers who are deaf or hard of hearing. She also discov-
ered a new text, Nurturing language and learning: Development of deaf
and hard-of-hearing infants and toddlers by Spencer and Koester (2015)
that will be a great resource for her. Slowly but surely Davin is gaining
greater confidence in her ability to coach families; she is thankful that
she has a coach who has been able to find time to observe some of her
sessions and spends time in providing feedback that assists her in de-
veloping competence. As she looks forward to a second year with the
agency, Davin has selected some new goals for her personal learning
agenda. The online course on Infant/Toddler Assessment is a top pri-
ority for her; she makes a note to check on the application deadline.
 Nevins and Sass-Lehrer  61

She sees that it is almost time to leave for her next session; she reviews
her plans and prepares to meet the next family and is looking forward
to learning with them this week. Her mentor sees her as she heads
out and reminds her to think about her use of open-ended questions.
Davin has become a connected learner.

SUMMARY

Continuous learning is expected of all individuals in the professional

workforce today. Technological advances that support professional
learning have created a new landscape for developing and sustaining
the skills and knowledge that are required for virtually any field imag-
inable. This, in turn, has created a tremendous opportunity for families
of infants and toddlers who are deaf or hard of hearing to have access to
a well-qualified and competent service provider despite their geographic
location. New learning opportunities continue to develop and gain
greater acceptance as the belief that high impact professional education
is an essential path to improved practice. Early interventionists must pair
their passion for what they do with a pursuit of excellence in how they do
it by adopting a learner first attitude for professional growth. With this
essential disposition they will be positioned to improve outcomes for the
families and the infants and toddlers with whom they work.
Acknowledgments: We would like to acknowledge Wendy DeMoss and
Beth S. Benedict for their careful reading and suggestions for this chapter.
Their input was instrumental in crafting the content and structure of this
final product.

SUGGESTED ACTIVITIES

1. Read more about Twenty-First Century Skills: watch YouTube video https://
www.youtube.com/watch?v=GegtmIJPdrM. Identify three areas of knowl-
edge and skills that you would like to enhance over the next year. Explain
why these knowledge and skill areas are important for your work with
infants and toddlers who are deaf or hard of hearing and their families.
62  Exemplary Practice Through Professional Learning

2. Learn more about how to use Twitter by requesting a free copy of the
Twitter Handbook for teachers at the following link:  http://plpnetwork.
com/2012/06/08/free-13-page-twitter-guide-teachers/. Sign up for a
Twitter account and find five professional contacts/organizations to fol-
low. Create a routine that supports regular review of your Twitter feed;
retweet posts of interest to your own followers.
3. Contact your state early hearing detection and intervention (EHDI) pro-
gram and/or the National Center for Hearing Assessment Management
(NCHAM) (http://infanthearing.org) to discover professional development
trainings and other resources available. Identify one professional learning
opportunity that meets your needs and interests and make it happen.
4. Select one of the nine competency areas in the Knowledge and Skills of
Early Intervention Providers (JCIH, 2013). Assess your stage of compe-
tence (Howell, 1982, as described in this chapter) for each of the knowl-
edge and skill statements in this section. Identify three competencies
that you believe are below the “Conscious Competent” stage. Describe a
learning strategy described in the chapter that you believe can enhance
your developing competence in those selected areas.

RECOMMENDED RESOURCES

1. The Alexander Graham Bell Association for the Deaf and Hard of Hearing
Information and resources, calendar of educational programs for profes-
sionals including certificate programs, symposia, conferences, and
seminars. See http://listeningandspokenlanguage.org/Document.
aspx?id=1802.
2. Division for Early Childhood
A Division of the Council for Exceptional Children hosts an annual confer-
ence and publishes recommended practices and policy documents to
promote best practices for young children with special needs and their
families. See http://www.dec-sped.org/.
3. Gallaudet University, Graduate School and Center for Continuing Studies
Degree and certificate programs on campus and online focused on early
intervention and early childhood. See http://www.gallaudet.edu/aca-
demics_and_research/graduate_programs.html; http://www.gallau-
det.edu/ccs.html.
4. The Laurent Clerc National Deaf Education Center
 Nevins and Sass-Lehrer  63

The Clerc Center, at Gallaudet University in Washington, DC, provides

information and resources, training and technical assistance, webi-
nars, products, and publications for professionals. See http://www.
gallaudet.edu/clerc_center.html.
5. LSLogic
LSLogic is online portal to a wide range of learning opportunities. LSLogic
offers modules and courses, hosts Connected Learning Communities,
provides access to video observations, and matches mentors/coaches
to learners interested in upleveling skills in listening and spoken lan-
guage practice. See www.lslogic.org.
6. The National Center for Hearing Assessment Management (NCHAM)
A national resource center for families and professionals supporting new-
born hearing screening, early identification, and intervention programs.
NCHAM hosts an annual meeting, conferences, and workshops. See
http://infanthearing.org/.
7.
The National Center for Hearing Assessment Management
E-Book:  A  Resource guide for early hearing detection and intervention
(EHDI).
This online resource includes chapters on a range of topics from newborn
hearing screening, hearing evaluation, and delivering early interven-
tion services for deaf and hard-of-hearing children and their families.
The E-Book is updated annually. See http://www.infanthearing.org/
ehdi-ebook/.
8. Victorian Deaf Education Institute
The Victorian Deaf Education Institute offers innovative professional
learning in partnership with schools, universities, and professional
organizations. Instructors include high caliber speakers who range
from leading global experts and academics to practicing teaching and
allied health professionals. See http://www.deafeducation.vic.edu.
au/Pages/home.aspx.

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gory/trends/education-trends/#.UukiyxBdWSp.
Cochran-Smith, M., & Lytle, S. L. (1999). Relationships of knowledge and prac-
tice: Teacher learning in communities. Review of Research in Education, 24,
249–305.
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Dunst, C. J., Bruder, M. B., Trivette, C. M., & Hamby, D. W. (2006). Everyday
activity settings, natural learning environments, and early intervention
practices. Journal of Policy and Practice in Intellectual Disabilities, 3, 3–10.
Gallacher, K. (1995). Coaching partnerships: Refining early intervention practices.
Missoula, MT: Montana University Affiliated Rural Institute on Disabilities.
Goleman, D. (1981). The New Competency Test: Matching the right people to the
right jobs. Psychology Today, 15, 35–46.
Hanft, B. E., Rush, D. D., & Sheldon, M. L. (2004). Coaching families and col-
leagues in early childhood. Baltimore, MD: Brookes Publishing Co.
Hart, J. (2014). Top 100 tools for learning 2014. Retrieved from http://www.slide-
share.net/janehart/top-100-tools-for-learning-2014.
Heath, C., & Heath, D. (2007). Made to stick. New York, NY: Broadway Books.
Howell, W. S. (1982). The empathic communicator. Prospect Heights, IL: Waveland Press.
Jarche, H. (2013). PKM Personal Knowledge Management. Retrieved from http://
www.jarche.com/wp-content/uploads/2013/03/PKM-2013.pdf.
Jensen, E. (2007). Introduction to brain compatible learning (2nd ed.). Thousand
Oaks, CA: Corwin Press.
Joint Committee on Infant Hearing. (2013). Supplement to the JCIH 2007 pos-
ition statement: Principles and guidelines for intervention after confirma-
tion that a child is deaf or hard of hearing. Pediatrics, 131(4), e1324–1349.
doi:10.1542/peds.2013-0008.
Killion, J. (2012). Meet the promise of content standards:  Professional learning
required. Oxford, OH: Leaning Forward.
Knowles, M.  S. (1990). The adult learner:  A  neglected species. Houston,
TX: Gulf Press.
Nussbaum-Beach, S., & Hall, L. R. (2012). The connected educator: Learning and
leading in a digital age. Bloomington, IN: Solution Tree Press.
Perkins, D. (2003). King Arthur’s round table:  How collaborative conversations
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3 Families: Partnerships in Practice
Marilyn Sass-Lehrer, Ann Porter, and Cheryl L. Wu

Sally Ann, a speech and language pathologist, has just met with a
couple, Li and Sunny, who recently learned that their infant son is
deaf. Li and Sunny moved to the United States from China for better
job opportunities. They have lived in the United States for only a few
months and have already secured satisfactory employment. They both
understand and speak English at a conversational level, however,
they are more comfortable using their native language of Mandarin
Chinese. They want what is best for their son, Kevin, and are strug-
gling to come to terms with what being deaf means and how this might
impact their family. Both Li and Sunny are consumed by thoughts of
what caused Kevin to be deaf and what they might be able to do to
“fix” or “correct” his condition. They are worried about the stigmas
surrounding disability in the Chinese community and are concerned
that their families will encourage them to come home so that they can
assist in taking care of Kevin.
When Sally Ann, the early intervention service coordinator, con-
tacted Li and Sunny, they were surprised to learn that there were pro-
grams and services available to them. Sally Ann hopes to develop a

65
66  Families: Partnerships in Practice

good relationship with Sunny and Li and is aware that she knows
very little about their cultural heritage and how they will respond to
having a deaf child. She wants to help them understand Kevin’s special
qualities and develop the confidence they need to make the right deci-
sions for Kevin, but frankly she doesn’t know where to begin.

GUIDING QUESTIONS

1. How can early intervention specialists establish effective culturally

responsive relationships with families? How might this differ from family
to family?
2. How can early intervention specialists be culturally responsive in

their interactions with families with different experiences, beliefs, and
values?
3. What practices might the interdisciplinary team employ to support mean-
ingful family involvement and informed decision making?
4. How might specialists collaborate to support families and promote their
abilities to advocate for their children?

COMPETENCIES ADDRESSED IN THIS CHAPTER

1. Family-Centered Practices:  Family–Professional Partnerships, Decision

Making, and Family Support
2. Socially, Culturally, and Linguistically Responsive Practices including

Deaf and Hard-of-Hearing Cultures and Communities; Sensitivity to and
Respect for an Individual Family’s Characteristics

INTRODUCTION

The work of the early intervention specialist begins with the family. Li and
Sunny, the parents in the vignette for this chapter, are like other parents
 Sass-Lehrer et al.  67

and caregivers of young deaf or hard-of-hearing children. They share the

same hopes, dreams, and concerns that all families have: Will my child be
safe, healthy, and happy? Will my child have friends? What kind of edu-
cation will my child receive? Will my child find good employment and be
able to take care of a family? Families with children who are deaf or hard
of hearing, especially those who have no previous experience with what
it means to be deaf have even more questions: How will we communicate
with our child? What programs and services are available for our family?
Would assistive technologies benefit our child? How will we know what
is best for our child’s future? Who will help us?
This chapter opens with a summary of the family’s impact on early child
development and family well-being. A  discussion of the role of families
in early intervention is followed by family involvement, the principles of
family-centered practices, and family and professional partnerships. Next is
an overview of family support and guidelines for informed family decision
making. Families’ cultural beliefs influence their perspectives on many issues
from child rearing to participation in early intervention and, therefore, the
importance of professionals’ cultural competence is integrated throughout
the chapter. The chapter concludes with advice for professionals.

FAMILIES’ IMPACT DURING THE EARLY YEARS

Families and the Home Environment

Families are a powerful influence on their children’s early development.
Scientists regularly present new evidence on the importance of the earli-
est months and years of life and the capability of the infant brain (Schiller,
2010). Compelling scientific discoveries on early brain development em-
phasize the significance of the family and the home environment as the
primary source for nurturing an infant’s development. Early intervention
programs focus on the family because they know that the quality of the
home environment makes a significant difference in a child’s develop-
ment (Bodner-Johnson, 1986; Dickinson & Tabors, 2001; Hart & Risley,
1995; Meece, 2002).
68  Families: Partnerships in Practice

Urie Bronfenbrenner (1979, 1986) developed a framework that provides

professionals with insight into development through an understanding
of the child’s environment. Bronfenbrenner’s ecological systems model
describes the contexts that influence development and the transactional
relationships among the people, the social and economic conditions, and
the institutions in our environment. The family, a central component of
Bronfenbrenner’s ecological systems framework, has unique characteris-
tics, structures, and relationships. Understanding familial relationships,
cultural beliefs, and interactions with others in their communities, places
of work, and other key settings provides professionals with insight into
the child’s environment and appreciation of the family’s perspective.
Early intervention professionals need to be aware that each child is a
part of a larger family system that may include extended family mem-
bers and others who play significant roles in the life of the child. Lynch
and Hanson (2011) remind professionals that “family” is not limited
to the child’s biological parents and may encompass an extended kin-
ship network that is involved in the child’s life in different ways and has
varying roles related to child rearing, decision making, and the child’s
daily activities. Professionals need to ask families who they consider to
be part of their extended family system and establish effective relation-
ships with all of those who play an important role in the life of the child.
Changes that affect an individual or any part of the family system
have an impact on all family members. For example, the birth of a baby,
though typically a very welcome life event, can temporarily disrupt the
family system and compel the family to reorganize as they accommodate
this new family member. When the baby who is born shares the charac-
teristics of other family members and the family’s community, the new-
born is assumed to fit into the existing family structure. Family members
generally expect that changes needed to meet the demands of caring for
a new baby will be manageable. When families discover that their baby is
different from what they expected or has special needs, families need to
make adaptations that impact everyone in the family.
Family reactions to the birth of a baby who is deaf or hard of hearing
vary from disappointment to joy, sadness to relief, and denial to acceptance.
 Sass-Lehrer et al.  69

Professionals who have the skills to support families emotionally and are
knowledgeable about children who are deaf or hard of hearing can go a long
way toward minimizing family concerns and stress by optimizing the family’s
abilities to adapt to meet their child’s developmental needs (Hintermair, 2006;
Pipp-Siegel, Sedey, & Yoshinaga-Itano, 2002; Young & Tattersall, 2007; and
Chapter 6, Getting Started: Hearing Screening, Evaluation, and Next Steps).

Building Relationships with Families

Having a new baby in a family can be overwhelming both physically and
emotionally. The fact that Sunny and Li’s son is deaf has practical implica-
tions that may strain their family’s resources. For example, they must find
time for appointments with specialists such as the audiologist and Ear,
Nose, and Throat doctor and may need to figure out how to pay for hear-
ing aids. The childcare plans they arranged prior to Kevin’s birth may no
longer be appropriate, and they may need to consider other arrangements
that are further from home or more costly. In addition, Li and Sunny need
information about what it means to be deaf or hard of hearing, about
communication and available technologies, and about programs and
services. Prior to Kevin’s birth, they did not know anyone who was
deaf other than Sunny’s great uncle who gradually lost his hearing as
an elderly man. Families often discover that family interactions, family
resources, and parenting and support services change as they accommo-
date to the needs of a newborn who is deaf or hard of hearing (Jackson &
Turnbull, 2004). Li and Sunny discovered that adapting to meet Kevin’s
needs had an effect on their work, budget, and family time together.
Getting to know the family and developing a trusting and mutu-
ally respectful relationship are the first steps for the early intervention
team (Meadow-Orlans, Mertens, & Sass-Lehrer, 2003). The number
of young children who are deaf or hard of hearing with diverse cul-
tural, racial, ethnic, and socioeconomic characteristics is increasing
whereas the number of professionals who are deaf or hard of hearing
or have multicultural backgrounds remains low (Wu & Grant, 2013).
Professionals with limited knowledge of families whose life experiences
70  Families: Partnerships in Practice

differ from their own may face challenges developing positive relation-
ships with these families.
Having a deaf or hard-of-hearing child takes on different meanings
for families. Whereas some families will readily accept that their child is
deaf, others may believe that being deaf is a temporary situation that will
go away over time, or that a cochlear implant or other medical treatment
will “fix” the problem. Some families struggle with the belief that they
hold some responsibility for their child’s condition, or that their commu-
nity will shun them or their child. Professionals must have the disposi-
tions, knowledge, and skill sets to convey sensitivity and provide support
that reflects an understanding of each family’s unique experience.
To develop a mutually respectful relationship with Li and Sunny, Sally
Ann must not only seek to understand their perspectives and the reali-
ties of their lives, but also examine her own beliefs and biases. Sally Ann
has her own ideas about what would be best for Kevin and will need to
acknowledge her biases and manage them appropriately. She and the
other professionals on the team might discuss their perspectives about
Li and Sunny’s situation and how their biases might impact their rela-
tionship with the family. Families’ values and beliefs stem from their life
experiences and their culture, language, and communities. An inten-
tional focus on Li and Sunny’s values and beliefs and their vision for
Kevin’s future will enable the team to develop a positive relationship with
the family and provide appropriate support in the areas that are most
important to the family.
A Social Justice Framework adapted by Wu and Grant (2013) sug-
gests a six-part model for working with culturally diverse families. Part
I of this approach addresses cultural encounters and reflections. Table
3.1 illustrates a Social Justice Framework applied to the chapter vignette.
The table describes both the content and process aspects of communica-
tion and interaction involved in a dynamic relationship. Content refers
to “what” an individual wants to convey, that is, the information or guid-
ance to be shared. Process refers to “the way” in which that information
is conveyed. Developing a process of interaction that is compassionate,
curious, and respectful of each others’ values and roles helps build a
strong relationship and supports the effectiveness of giving and receiving
 Table 3.1  Social Justice Framework Applied to Chapter Vignettea

Stage Defined Process Content

Stage I What do I/my team bring to the relationship? American and Chinese Perspectives
Cultural Encounters and Values, Perceptions, Goals, Knowledge, Lack of Parenting
Reflections Knowledge, Cultural Resources Family Relationships
What do we think/feel when we look at this family? Community
What do we “think” are the family’s Values, Perceptions, Helping Professionals
Goals, Knowledge, Lack of Knowledge, Cultural
Education
Resources
Disability
What do we think the family thinks/feels when they
look at us? Deaf/Hard of Hearing
Communication
Assistive Technology

Stage II What cultural and language resources do I/my team Cultural and Language Resources
Dialogue and the family need? Language Interpreters
Among the Team What are my/my team’s goals, roles, and understanding Cultural Mediators
of how our program works?
with the Family Chinese cultural agency, health or
What are the family’s goals, roles, and their understanding social services, church/spiritual home
of how their family functions?
Chinese parents of deaf children
How does the family/team understand each other’s goals?
Chinese deaf adults

Stage III Clarify my/my team’s understanding of the family’s whole

Conceptualization situation; goals, roles, family functioning, and their
understanding of being deaf
continued
 Table 3.1 Continued

Stage Defined Process Content

Stage IV Engage in a dialogue with my team and the family Capacity of all players and equity
Action Planning for to reach mutual agreement regarding the following: regarding power/control
Social Justice Decision making, coordination, communication
regarding the plan
Desired outcomes and goals
Action plan and timelines
Resources and supports desired (ensure equity and
accessibility)

Stage V Team and family follow the plan and adapt/modify it as needed What worked? What did not work?
Implementation, Experiment with available resources How do we know?
Experimentation, Together identify accountability measures to ensure social What needs to be done differently?
and Evaluation justice and equity
Evaluate it from all perspectives, i.e., child, family, team

Stage VI Engage in dialogue with team and with family

Recursive Process Reflect about what is different now compared with when
we began to work together
Go through previous steps to ensure continued
understanding and clarify misunderstandings
Consider how the partnership is developing and how
it might improve
Adapted from Wu, C. L., & Grant, N. C. (2013). Multicultural deaf children and their hearing families: Working with a constellation of diversities. In C. C.
a

Lee (Ed.), Multicultural issues in counseling: New approaches to diversity (4th ed., pp. 235–257) Alexandria, VA: American Counseling Association.
 Sass-Lehrer et al.  73

information (content), being able to work together, identifying issues and

resources, and decision making.

Family Well-Being
The quality of an infant’s early experiences is dependent in large measure
upon the emotional and physical availability and responsiveness of the
infant’s primary caregivers (Pressman, Pipp-Siegel, Yoshinaga-Itano,
Kubicek, & Emde, 2000). Caregiver and child attachment is crucial to
early learning and development (Bowlby, 1988). Supportive and loving
relationships between infants and their caregivers foster early brain
development and establish a foundation of trust and security (Shore,
2003). Infants who feel safe, secure, and protected are more likely to feel
confident enough to explore and interact with their environment than
infants who do not feel secure.
Many factors can affect healthy socio-emotional attachment including
individual child characteristics and caregiver and child communication
proficiency (Traci & Koester, 2011). Attachment may be compromised if
parents or caregivers are overwhelmed, depressed, or emotionally dis-
tracted and less responsive to the needs of their infants than if they were
not. Although hearing parents and caregivers of deaf infants may at first
find it challenging to interpret and respond appropriately to their deaf
infants’ behaviors, support from professionals, other families, and deaf
adults can help them become more sensitive and responsive. For more
information on responsive parenting with children who are deaf or hard
of hearing, see Meadow-Orlans, Spencer, and Koester (2004). Families
are resilient and with the help of other families, adults who are deaf, and
professionals with specialized training are just as likely to form positive
attachments with their children as hearing families with hearing chil-
dren (Meadow-Orlans et al., 2004; Spencer & Koester, 2015).
Li and Sunny’s overall sense of well-being will determine the extent
to which they are able to provide a secure and nurturing home environ-
ment for Kevin to flourish. Family Quality of Life is defined by the Beach
Center on Disability at the University of Kansas as “.  .  . the extent to
which families’ needs are met, family members enjoy their time together,
74  Families: Partnerships in Practice

and family members have a chance to do the things that are important to
them” (Beach Center on Disability, 2014).
Making adaptations in everyday life brought about by having a child
who is deaf or hard of hearing is a complex process for hearing families.
Families need multiple layers of support that envelop them on their path
to success. Although the meaning of success varies from family to family,
the ability of each family to reach its goals will depend upon the capac-
ity of the family to adapt to the unique needs of their child and family. A 
respectful and collaborative approach from all stakeholders in the system
and an understanding of the important role that each one plays contrib-
ute to the well-being of the family and their confidence in their ability to
raise a child who is deaf or hard of hearing [Global Coalition of Parents of
Children Who Are Deaf and Hard of Hearing (GPOD), 2010b].

ROLE OF THE FAMILY AND POLICIES IN EARLY INTERVENTION

Prior to the full implementation of newborn hearing screening programs

in many developed countries, it was usually the family who first realized
that their child was unable to hear. A lack of knowledgeable professionals
and resources frequently left the family without support or guidance. In
many countries throughout the world in which newborn hearing pro-
grams are not yet established, it is still families who first discover their
child is deaf, and the responsibility to find resources rests with them. (See
Chapter 10, Early Intervention in Challenging National Contexts.)
Families have long been recognized as essential to the development
of children who have developmental, communicative, or educational
needs (Bailey, Raspa, & Fox, 2012; Bronfenbrenner, 1979; Dunst, Trivette,
& Deal, 1988). In the United States, legislative policies and programs
have institutionalized family participation and their rightful positions as
advocates, decision makers, and partners with professionals (Turnbull,
Turnbull, Erwin, Soodak, & Shogren, 2011). The 2004 amendments to
the Individuals with Disabilities Education Improvement Act (IDEA) in
the United States emphasized family participation in all aspects of early
intervention programming. The legislation cites decades of research and
 Sass-Lehrer et al.  75

experience demonstrating the positive effects on child outcomes through

strengthening the family role and responsibility. IDEA provides support-
ive services for families that include for example, family training, manag-
ing assistive technologies, counseling, home visits, transportation, social
work, sign language instruction, and providing families with informa-
tion, skills, and other support [Individuals with Disabilities Education
Improvement Act (IDEA),  2004]. (See Chapter  4, Legislation, Policies,
and Role of Research in Shaping Early Intervention for more information
about IDEA.) The Individualized Family Service Plan (IFSP), a require-
ment of IDEA, provides a process for family participation by including
families as partners in the initial and ongoing assessment of their child,
the identification of their child’s needs and their family’s priorities, and
the selection of resources and services.

FAMILY INVOLVEMENT

Sally Ann’s primary goal is to support and encourage Li and Sunny’s

involvement, and she questions where she should begin. Sally Ann might
first expand her knowledge of family involvement and consider how her
own values and beliefs influence the expectations she has for Li and Sunny.
She might then explore Li and Sunny’s perspective on family involvement
including how they envision their involvement and how the interdisci-
plinary team can provide support to optimize their participation.
Family involvement is a partnership between families and the pro-
fessionals with whom they work. It includes a range of behaviors that
supports a child’s development. A family’s own educational experiences
as well as their culture strongly influence the family’s perception of the
meaning of involvement and the manner in which they prefer to be
involved. Consequently, a family’s approach to engaging their child may
be different, though equally nurturing and supportive, than the inter-
actional practices suggested by a professional who has been influenced
by a western, Euro-American cultural perspective. For example, some
families are not comfortable playing with their children or play with
their children in ways that are not familiar to professionals with cultural
76  Families: Partnerships in Practice

experiences different from a family’s traditions. Trusting relationships

with families require an understanding and appreciation of the social and
cultural capital of families and their communities and avoiding assump-
tions about families based on their cultural heritage (Cohrssen, Church,
& Tayler, 2009).
Family involvement has traditionally been understood from the per-
spective of teachers and schools. Families who were considered to be
highly involved were those who volunteered in the classroom, chaper-
oned field trips, helped their children complete their homework, or were
actively involved in the school’s parent–teacher association. This limited
view of family involvement continues in some communities today, but
is no longer possible or relevant with increasing numbers of mothers
in the workforce and growing social, cultural, and economic diversity.
Extensive research on family involvement indicates that there are myriad
ways in which families can make a difference in their child’s early devel-
opment and education.
Children whose families are highly involved in their development tend
to have the best outcomes. Carter (2002) examined 70 studies of fam-
ily involvement and identified several themes that reinforce the impor-
tance of family involvement throughout a child’s school years. Many of
the studies linked family involvement to improvements in achievement
scores. An additional finding frequently noted in these studies was that
despite the achievement differences that exist among children with di-
verse cultural, ethnic, and socioeconomic backgrounds, family involve-
ment helped to close the achievement “gap.” Henderson and Berla (1994)
noted that rather than social status or income levels, the best indicators
of achievement are the following:

• Parents who create a home environment that encourages learning

• Parents’ expression of high educational expectations
• Parents’ interest in and willingness to participate in their children’s
education, both at school and in the community

Professionals are charged to engage families in many different ways.

Family–professional partnerships are crucial to ensure that strategies
for family involvement reflect the diversity of families and the special
 Sass-Lehrer et al.  77

characteristics of their children (Halgunseth, Peterson, Stark, & Moodie,

2009). Families that are highly involved in their children’s early interven-
tion program, in general, are better able to communicate with their chil-
dren and contribute more to their children’s progress than those who are
not as actively involved (Calderon, 2000; Moeller, 2000).
Families with children who are deaf or hard of hearing are involved
from the first day they learn of their child’s hearing status. In addition to
responsibilities associated with caring for a newborn, families must also
arrange for appointments with specialists and obtain new information
and skills that will maximize their interactions with their infants. This
may be especially complicated when a family needs to consider things
such as care for other children or family members, work schedules, or
transportation. Families such as Li and Sunny discover that making
appointments or following up with recommendations from specialists is
even more difficult when information is not presented in their native lan-
guage or in a culturally meaningful way (Sass-Lehrer, 2004).
As Sally Ann reflects on her views and understandings about family
involvement, she must consider Li and Sunny’s cultural context, life cir-
cumstances, resources, and competencies. Sally Ann should work with
Li and Sunny to ensure that appointments are made at times that fit their
schedules so that they can participate as much as possible. If transporta-
tion is a challenge, she could work with the social worker on her team to
find community resources that are available. Because Li and Sunny are
more comfortable with Mandarin than English, Sally Ann would need to
work with them to explore appropriate language interpreters and transla-
tors and be sure all information is accessible to them. Li and Sunny are
recent immigrants whose families live far away and are not available to
provide support on a regular basis. She and others on the interdiscipli-
nary team need to extend support that will enable them to develop the
confidence and competence they need to be involved to the maximum
extent possible.
Sarimski, Hintermair, and Lang (2012) examined the relationships
among several variables including parental stress and satisfaction with
early intervention services. The results of their investigation suggested
that caregivers with stronger perceptions of their parenting competence
78  Families: Partnerships in Practice

reported lower levels of parent–child and family-related stress. These

families also reported greater satisfaction with the professional support
they received from their early intervention program. The researchers
concluded that parental competence was associated with the ability of
professionals to successfully involve families in early intervention and
promote their sense of empowerment.
High levels of family involvement, along with the provision of timely
and quality early intervention services, tend to be the strongest predictors
of language outcomes for young deaf children (Moeller, 2000; Calderon,
2000). Professionals must be sensitive to each family’s priorities and life-
style, recognizing that family satisfaction and well-being are nourished
by the family’s ability to engage in the activities they love, and they should
be encouraged to pursue their goals for themselves and their children
(Moeller, Carr, Seaver, Stredler-Brown, & Holzinger, 2013).

FAMILY-CENTERED PRACTICE

Family-centered principles are a cornerstone of best practices in early

intervention. Implementation of these principles requires recognition of
the centrality of the family and support for family well-being as essential
to the overall development of the child. In contrast to a more traditional
approach that focuses on the child alone, a family-centered perspective
focuses on the child within the context of the family (Lynch & Hanson,
2011). Family-centered practice is a philosophy or framework for working
with families that includes a core set of beliefs and attitudes about fami-
lies and implications for how early interventionists interact with families.
Family-centered tenets are reflected in the best practices of profes-
sionals in different disciplines including audiology, speech-language
pathology, education, early childhood special education, counseling,
social work, and many health-related fields. Allen and Petr (1996) iden-
tify three common elements as central to family-centered practice among
these disciplines: (1) view the family as a unit of attention; (2) guide serv-
ices through family choice and empowerment in decision making; and
(3) focus on building strengths and capabilities of families.
 Sass-Lehrer et al.  79

Every stage of early intervention from newborn hearing screening

and assessment to the implementation and monitoring of child and fam-
ily outcomes reflects the central principles of family-centered practice.
The quality of early intervention is largely dependent upon the profes-
sional’s ability to put these principles into practice. Sally Ann may find
the transition from a child-centered perspective to one that focuses on
the child within the family unit to be a challenge. She accepts the prin-
ciples of family-centered practice as summarized in Table 3.2; however,
she is unsure how or if she can implement these while working with Li
and Sunny. For example, it is very difficult for Sally Ann to accept that
Li and Sunny, new parents with no knowledge of raising a deaf child,
could possibly be considered “experts on their child.” How will they know
what is best for Kevin? She considers herself an expert on deaf children
and believes strongly that young children must have early and consistent
amplification. Suppose Li and Sunny decide that they do not want Kevin
to wear his hearing aids in public and want to wait until Kevin is older.
How could she respect their decision and how would she respond?
A deeper understanding of Li and Sunny’s values and traditions would
inform Sally Ann’s response to issues such as wearing hearing aids in
public or using sign language with Kevin. Many families, and especially
more traditional Chinese families, are concerned about the stigma asso-
ciated with having a child with a disability and may believe that hearing
aids and sign language draw attention to their child being deaf and thus
cause the family embarrassment. This kind of cultural information can
shape how Sally Ann and the other members of the team discuss these
issues with Li and Sunny.
Effectively implementing a family-centered approach requires both
administrators and professionals to go beyond cultural sensitivity to
being culturally responsive. Culturally responsive behaviors are demon-
strated through both attitudes and actions (Tervalon & Murray-Garcia,
1998). Cultural competence implies the ability to “. . . think, feel and act in
ways that acknowledge, respect, and build on ethnic-socio-cultural and
linguistic ability” (Lynch & Hanson, 1993, p. 50). Becoming culturally
competent is a process that requires ongoing learning from the families
and others we work with as well as the courage and humility to recognize
80  Families: Partnerships in Practice

Table 3.2  Family-Centered Services: Guiding Principles and Practices

for Delivery of Family-Centered Servicesa

Principle 1 The overriding purpose of providing family-centered help

is family empowerment, which in turn benefits the
well-being and development of the child.
Principle 2 Mutual trust, respect, honesty, and open communication
characterize the family–provider relationship.
Principle 3 Families are active participants in all aspects of decision
making. They are the ultimate decision makers in the
amount, type of assistance, and the support they seek to
use.
Principle 4 The ongoing work between families and providers is
about identifying family concerns (priorities, hopes,
needs, goals, or wishes), finding family strengths, and
the services and supports that will provide necessary
resources to meet those needs.
Principle 5 Efforts are made to build upon and use families’ informal
community support systems before relying solely on
professional, formal services.
Principle 6 Providers across all disciplines collaborate with families to
provide resources that best match what the family needs.
Principle 7 Support and resources need to be flexible, individualized,
and responsive to the changing needs of families.
Principle 8 Providers are cognizant and respectful of families’ culture,
beliefs, and attitudes as they plan and carry out all
interventions.
Adapted from Iowa’s Early ACCESS and Iowa SCRIPT (2004).
a

what we do not know and need to learn. Making mistakes, or respond-

ing in ways that we later recognize as insensitive or misguided, is part of
the learning process. Being culturally responsive implies the ability to
improve our behaviors when our words or actions are awkward or inap-
propriate. See Lynch and Hanson (2011) and the National Center for
Cultural Competence in the resources section at the end of this chapter.
Implementing a family-centered approach can be challenging and
requires program administrators and professionals to examine their
beliefs and practices as they commit to ensuring program practices
 Sass-Lehrer et al.  81

that reflect these principles. In the scenario presented above, Sally Ann
does not need to relinquish her professional role or avoid sharing the
knowledge she has as an expert in the area of deaf education with Li and
Sunny. She does, however, need to convey her respect for their views and
understanding of their family situation as she works with them as equal
partners to determine what will be best for Kevin and their family. Early
intervention professionals who understand the family’s cultural and lin-
guistic context can better identify family strengths, needs, and preferred
goals and adapt their help-giving strategies to fit the individual family
(Lynch & Hanson, 2011).
Hintermair (2004, 2006)  proposed a “resource oriented” approach
that encourages professionals to identify and reinforce families’ and chil-
dren’s resources and strengths. Strategies that build on families’ strengths
include ensuring that families have strong support networks available
to them including other families with deaf children and adults who are
deaf (Global Coalition of Parents of Children Who Are Deaf and Hard
of Hearing, 2010b; Hintermair, 2000, 2006; Meadow-Orlans et al., 2003;
Moeller et al., 2013).
Early intervention programs for children who are deaf or hard of
hearing and their families in the United States, Australia, the United
Kingdom, and many other countries embrace a family-centered perspec-
tive, although the implementation of these practices varies (Moeller et al.,
2013). For example, although open communication between profession-
als and families is a tenet of family-centered practices, sharing informa-
tion about topics such as immigration status, religious beliefs, marital
status, or health issues could jeopardize access to services in some coun-
tries or geopolitical contexts.
Beginning and maintaining a family-centered approach can be chal-
lenging for both programs and professionals (Cohrssen et  al., 2009).
A  study by Roush, Harrison, and Palsha (1991) in the United States
found that professionals providing early intervention services to deaf or
hard-of-hearing children and their families have struggled to implement
a family-centered approach. The researchers proposed that although pro-
fessionals believed in the philosophical underpinnings of family-centered
practice the lack of specialized training and experiences working with
82  Families: Partnerships in Practice

families might have explained why professionals had difficulty putting

them into practice. Their findings are supported by more recent studies
of early intervention providers who support a family-centered philoso-
phy, but in practice have difficulty involving families in specific aspects of
the early intervention process (Ingber & Dromi, 2010) or are more child
oriented than family focused (Dunst, Boyd, Trivette, & Hamby, 2002;
Fleming, Sawyer, & Campbell, 2011; Peterson, Luze, Eshbaugh, Jeon, &
Kantz, 2007).
The knowledge and skills for promoting family-centered practice,
family–professional partnerships, decision making, and family sup-
port by professionals working with infants and toddlers who are deaf or
hard of hearing and their families are listed in Appendix 1 of the Joint
Committee on Infant Hearing (JCIH) Supplement (2013). (Also see
Table 1.1 in Chapter 1, What Every Early Intervention Professional Should
Know, for a listing of the knowledge and skills that are unique to profes-
sionals working with this population.)

Family–Professional Partnerships
Establishing effective family–professional partnerships is fundamental to
implementing family-centered practice. Partnerships with families begin
with developing positive relationships built on mutual respect and un-
derstanding (Kelly & Barnard, 1999). Sally Ann needs to consider not
only how she will establish a trusting relationship with Li and Sunny, but
also how her colleagues with expertise in other specialty areas will work
with the family. She is optimistic that every member of the interdisci-
plinary team appreciates the value of partnering with families and will
include Li and Sunny as equal partners on the team.
Collaboration among professionals on the team is essential to pro-
viding a cohesive and supportive professional network for the family
(National Deaf Children’s Society, 2002). Parents participating in early
intervention programs in Israel responded to a questionnaire designed
to assess their attitudes and beliefs about family-centered programming
(Ingber & Dromi, 2010). The parents in this study emphasized their de-
sire for more collaboration and support by a team that works together
 Sass-Lehrer et al.  83

and with parents. Collaboration with professionals on the team may

help Li and Sunny adjust to their son being deaf and what this means for
their family situation (Shonkoff, Hauser-Cram, Krauss, & Upshur, 1992).
Partnerships with professionals on the team may boost their family’s
ability to maximize Kevin’s development in emotional, social, cognitive,
communicative, and linguistic areas (Meadow-Orlans et al., 2003).
Turnbull et al. (2011) define partnership this way:

Partnership refers to a relationship in which families (not just

parents) and professionals agree to build on each others’ exper-
tise and resources as appropriate for the purpose of making and
implementing decisions that will directly benefit students and in-
directly benefit other members and professionals. (p. 137)

Turnbull et  al. (2011) identified seven principles of family profes-

sional partnerships. These include (1)  communication; (2)  professional
competence; (3)  respect; (4)  trust; (5)  commitment; (6)  equality; and
(7) advocacy.
Families differ in the ways they choose to collaborate with the early in-
tervention team. Although many families are eager to participate as part-
ners, others are less comfortable taking on roles that they believe should
be assumed by professionals. Previous experience with professionals and
bureaucracies, as well as beliefs about the role of professionals, may in-
fluence a family’s perceptions of authority and their relationship with
professionals.
Family participation may also vary depending upon their situation
and capabilities as well as their knowledge or perceived importance of an
issue in relation to their priorities and goals. Li and Sunny may be highly
engaged with the team to gather information about appropriate childcare
arrangements, transportation, and costs so that Li can return to work as
soon as possible. They may be highly involved for several weeks at a time
and then feel a need to be less engaged for a while. Professionals must be
sensitive to family priorities and other issues that may change how they
interact with the team, or limit the time they devote to their child’s early
intervention programming. Respect for families varying levels and pat-
terns of engagement supports family–professional partnerships.
84  Families: Partnerships in Practice

Sally Ann should aim to establish a partnership with Li and Sunny that
reflects sharing power with the family. Professionals who see themselves
as experts may demonstrate behaviors that reflect power over the fam-
ily. This approach may inadvertently discourage families from contrib-
uting their expertise and may diminish families’ influence as partners.
Although the balance of power in a partnership may shift in the direc-
tion of the professional or the family from time to time, the team should
promote families’ skills to build power within the family and ultimately
develop every family’s sense of empowerment (Creighton & Kivel, 2011).
Sally Ann might help Li and Sunny understand the potential benefit of
hearing aids or sign language for Kevin while building power within the
family. For example, rather than telling Li and Sunny that they must keep
Kevin’s hearing aids on 24/7 (exerting power over the family), she might
instead discuss with Li and Sunny the possibility of identifying some
times and places they would feel comfortable with Kevin wearing his aids.
Initially, Kevin might wear his hearing aids only at meal times at home or
when they are sharing stories with Kevin. Over time, Li and Sunny might
begin to feel more comfortable and decide on their own to increase Kevin’s
hearing aid wearing time and expand the settings in which he is using
his hearing aids. Sally Ann might also encourage Li and Sunny to attend
a family play group with other Chinese families. Meeting other families
who may also be concerned about using listening technology or sign lan-
guage and have considered their potential benefits may help Li and Sunny
make their own decisions about whether hearing aids and sign language
might be helpful for Kevin. Partnerships are flexible in nature and with
guidance and support families will gradually develop the confidence to
make decisions that are in the best interest of their child and family.
Fathers and other significant male caregivers have traditionally been
less directly involved in early intervention programming than mothers,
and Sally Ann, along with her colleagues, will need to work closely with
the family to ensure that every effort is made to encourage and support
both parents’ participation. A study by Calderon and Low (1998) found
that deaf or hard-of-hearing children whose fathers were present during
early intervention sessions demonstrated better outcomes, especially in
language and prereading skills. Flexibility in programming that allows
 Sass-Lehrer et al.  85

for scheduling of sessions at times that are convenient for the family is
one way that early intervention providers can support participation by all
members of the family (National Deaf Children’s Society, 2006). If only
one member of the family is able to be present during a home visit or a
center-based program activity, Sally Ann, in partnership with the other
family members, might consider the most effective ways of sharing the
information and events that transpired. Sally Ann and others could video
Kevin’s interactions, and discuss how the family might include opportu-
nities for Kevin to engage in similar activities as part of his daily routine
at home or with his childcare providers. Video technology such as Skype
or Face Time, photographs, and notes can help keep all family members
informed and support their engagement.

Family Support
Parents and caregivers discover early that many of their natural parent-
ing strategies for interacting with their infant or toddler rely on the abil-
ity to hear and often do not elicit the responses from their baby they
expected. The inability of families to connect with their infants in very
fundamental ways can challenge a caregivers’ sense of confidence and
competence. Families who feel competent and make accommodations
that support and nurture their child’s early communication are likely
to witness successful communication interactions with their children.
Pressman et al. (2000) found a relationship between maternal sensitivity
and child language development in their study. Pipp-Siegel and Biringen
(2000) suggest that professionals with high levels of expertise not only
in areas related to communication and language, but also in the provi-
sion of social–emotional support, are likely to be able to provide families
with the information and support they need to be emotionally available
to their infants.
Although professionals often focus on the quantity of verbal exchanges
in sign or spoken language between families and their deaf or hard-of-
hearing children, it is essential not to lose sight of the importance of the
quality of the relationship between family members, other caregivers,
and their children. Professionals should avoid the tendency to assess the
86  Families: Partnerships in Practice

effectiveness of family–child interaction in terms of number of words

or complexity of grammatical exchanges. The quality of interactions be-
tween families and their little ones is even more important than the quan-
tity of words or signs that the baby hears or sees (Turgeon, 2013).
Families’ competence and confidence in guiding their children’s devel-
opment are enhanced when professionals are able to provide families with
appropriate and timely support (Dromi & Ingber, 1999; Hintermair, 2000,
2006; Meadow-Orlans et  al., 2003; Young & Tattersall, 2007). Support
comes in a variety of forms and early intervention professionals can work
closely with families to determine the kinds of support that would be
most helpful to them. Professionals as well as spouses, extended family
members, other families with deaf children, and adults who are deaf or
hard of hearing have been identified as significant sources of support for
families (Hintermair, 2000; Meadow-Orlans et  al., 2003). Professionals
should be sensitive to the fact that some families may feel more comfort-
able turning to family members, friends, or others in their community
for support than to professionals.

Family-to-Family Support
The Global Coalition of Parents of Children Who Are Deaf or Hard of
Hearing (GPOD) conducted a worldwide online survey of families rais-
ing deaf or hard-of-hearing children. The purpose of the survey was to
understand the support needs of families around the world. Responses
from families indicated that both professionals and families who have
“walked the road before them” play a valuable role in providing support
and information to families (Global Coalition of Parents of Children Who
Are Deaf and Hard of Hearing, 2010a). Meeting other families who have
children who are deaf or hard of hearing, especially those who share sim-
ilar cultural beliefs and experiences, may be especially helpful. Families
value the emotional support and information provided by experienced
family members and many families like to connect with these families
soon after they have learned that their child is deaf.
Family support programs for families with deaf or hard-of-hearing
children have been developed in several states in the United States as well
 Sass-Lehrer et al.  87

as elsewhere around the world. One example of this type of program is

the Hands & Voices Guide-By-Your-Side Program. The Guide-By-Your-
Side Program “. . . is an innovative program designed to provide emotional
support and specialized knowledge from trained families of children who
are deaf or hard of hearing.” Although many early intervention programs
around the world provide family-to-family support or mentoring pro-
grams, they are often informal. (See the Recommended Resources at the
end of this chapter.)

Support from Deaf and Hard-of-Hearing Adults

Families also benefit from support from adults who are deaf or hard of
hearing who can help them understand the experiences of being deaf,
provide families with resources in the community, encourage families
to set high expectations for their children, and help them acquire com-
munication skills using the native signed or spoken language of their
country. Getting to know adults who are deaf or hard of hearing encour-
ages families to see their children’s strengths and focus on their abili-
ties and possibilities rather than their needs or limitations. Hintermair
(2000) found that families who had many contacts with other families
with deaf or hard-of-hearing children and adults who are deaf experi-
enced less isolation, stronger emotional connections with their child,
and better acceptance of their child. Other researchers have found that
families experience improved interactions with their child as a result
of having meaningful interactions with deaf or hard-of-hearing adults
(Watkins, Pittman, & Walden, 1998). Professionals who themselves are
deaf are valuable members of the early intervention interdisciplinary
team (Benedict & Sass-Lehrer, 2007). (See Chapter 5, Collaboration with
Deaf and Hard-of-Hearing Communities.)
Families benefit by learning from deaf adults how to maximize access
to visual information and incorporate visual strategies used by deaf adults
with their deaf children to develop effective communication strategies and
positive connections with their children (Mohay, 2000; Spencer, 2003).
For example, research focused on deaf parents raising children who are
deaf or hard of hearing provides an abundance of information on how
88  Families: Partnerships in Practice

parents who are deaf intuitively adapt their communicative interactions

to match their young child’s visual access to language (Koester, Papousĕk,
& Smith-Grey, 2000; Meadow-Orlans et al., 2004). Examination of the
strategies used by deaf parents reveals that deaf parents use visual lan-
guage, that is, the family’s native signed language or non-verbal com-
munication such as facial expressions, body language, and gestures, all
of which serve to attract and hold their baby’s attention. Their commu-
nication techniques emphasize the importance of attending to visual and
auditory turn taking and managing divided attention. Meeting deaf adults
with Chinese backgrounds might help Li and Sunny better understand
the experience of being deaf in the context of their cultural beliefs and
traditions. (See Chapter 8, Collaboration for Communication, Language,
and Cognitive Development.)

INFORMED DECISION MAKING

Families are faced with numerous decisions soon after they learn that
their child is deaf or hard of hearing. The first decision typically involves
the use of listening technology. Will the child be fitted with hearing aids?
What kind? One or two? And in places in which there is no financial sup-
port for hearing technologies, families wonder how they will be able to
pay for this equipment. The audiologist working with the child and the
family typically provides advice regarding the selection of listening tech-
nologies and may discuss the possibility of cochlear implants for chil-
dren who appear to be good candidates for this technology. These initial
choices lead to the next set of decisions that involve the communication
modality(ies) and language(s) the family will use with their child. These
decisions then inform the family’s selection of early intervention services
(Wainscott, Sass-Lehrer, & Croyle, 2008).
Families without prior knowledge of what it means to be deaf or hard
of hearing often find making decisions on behalf of their children stress-
ful (Meadow-Orlans et al., 2003). Professionals may inadvertently add
to this stress by pressuring families to make decisions quickly without
providing them with enough time to process information about the
various opportunities and to determine what is best for their child.
 Sass-Lehrer et al.  89

Individual family situations such as the family’s primary language, cul-

tural beliefs, geographic location, access to information (e.g., internet),
or the availability of specialized services (e.g., sign language) can make
the decision-making process complicated. Family members who are deaf
and communicate primarily in a native sign language may face chal-
lenges obtaining full information about the opportunities available for
their children from professionals who lack the signing skills to commu-
nicate effectively with them or who make assumptions about what these
families want for their children (Meadow-Orlans et al., 2003). Access to
information also affects families whose spoken language is not the same
as the majority language of their country and families who are unable to
read available materials. Professionals need to consider how to provide
information to families in a form that is easily understood.
Decision making, like many other processes, is highly influenced by
cultural beliefs and values and may be different family to family. The
more culturally competent and knowledgeable the professional team, the
more insightful and skilled they will be in engaging families in an effec-
tive decision-making process. Professionals may assume that families lack
the skills to make decisions that are appropriate for their families, when
in fact, the processes they use and the decisions they make differ from
those of the professionals. For example, some families’ decisions about
their children are a communal process that involves the extended fam-
ily or members of the family’s community rather than only the primary
caregivers. Professionals must also be aware of their personal biases not
only when providing information to families, but in their expectations
for how families react to the information they receive, seek other opin-
ions, or respond to professional guidance. Developing relationships with
families and becoming acquainted with how they make decisions will
aid professionals in providing meaningful support to families and help
families understand the complexity of the issues surrounding technology,
language, and communication opportunities. Families need information
about all the possibilities and guidance on how to realize the futures they
envision for their child and family.
Experienced professionals and evidence-based practice documents
support informed decision making in the achievement of successful
90  Families: Partnerships in Practice

outcomes [Joint Committee on Infant Hearing (JCIH), 2007; Moeller

et al., 2013; Young et al., 2006]. Informed decision making is a process
that guides families as they fully consider the opportunities available
for their children, supports their active participation in the process,
and results in families believing that they have made good decisions
on behalf of their children (Dunst et al., 1988; Moeller & Condon, 1994;
Young et al., 2006). The professionals’ role is to provide families with
comprehensive, balanced, and accurate information, assist them in
understanding the information, and help families make decisions that
are appropriate for their children. (See documents in the Recommended
Resources from the National Deaf Children’s Society, University of
Manchester, in the United Kingdom, Early Support: Helping Every Child
Succeed. Informed Choice, Families and Deaf Children:  Professional
Handbook.)
Many families use the internet, including websites and blogs, to share
information and find support (Porter & Edirippulige, 2007; Zaidman-Zait
& Jamieson, 2004). Professionals can encourage families to seek a vari-
ety of reputable sources of information and help them weigh the relative
benefits and limitations of the range of opportunities. Professionals can
also facilitate contacts with other families with deaf or hard-of-hearing
children and adults who are deaf or hard of hearing.
The GPOD survey found that families in developing countries
placed a higher level of importance on professionals’ opinions than
other families in developed countries. Across the world, over one-
third of families reported that they did not feel in control of the deci-
sions made regarding communication and education, and one-third
of all families have a difficult time letting professionals know if they
disagree with their recommendations (Global Coalition of Parents
of Children Who Are Deaf and Hard of Hearing, 2010a). Whereas
professionals may be tempted to hurry families along and tell them
what they believe is best for their child, this ultimately is not in the
child’s or the family’s best interest. Families will be faced with many
decisions through the early and later years of their child’s develop-
ment, and the skills they acquire early on will help them become
effective decision makers and advocates for their children and families.
 Sass-Lehrer et al.  91

Professionals may think they know what is best for a child and fam-
ily, and may inadvertently filter information provided or attempt to
influence their decisions. Instead, families should have access to all
information and have time to digest and evaluate the opportunities
available. There is no “one size fits all,” and each family needs to find
the way that will best suit their child and family. A  family-centered
approach that respects and honors the family’s knowledge and exper-
tise will empower the family and build their capacity to make informed
decisions throughout their child’s early years.

GUIDELINES FOR WORKING WITH FAMILIES

Advice for Professionals and Program Administrators

The advice to professionals from families who participated in the National
Parent Project (Meadow-Orlans et  al., 2003)  conducted in the United
States aligns with other interviews and surveys of families with very
young children who are deaf or hard of hearing (e.g., Global Coalition of
Parents of Children Who Are Deaf and Hard of Hearing, 2010a; Ingber
& Dromi, 2010; Jackson, 2011; Zaidman-Zait, 2007). The National Parent
Project conducted a national survey of families with children between
6 and 7  years of age, including additional telephone, TTY,a or face-to-
face interviews and focus groups. These families shared their experiences
during the first few years of their child’s life, and their recommendations
for other families and professionals. The advice they offered to profes-
sionals is summarized in Table 3.3.

SUMMARY

Professionals have the responsibility of demonstrating that the early

intervention services provided make a positive difference for children
and their families. Programs and services should be aimed toward build-
ing family competence and helping families acquire the knowledge and

a
A TTY is a text telephone that is used by many deaf and hard-of-hearing people. Video
phones, Skype, and Face Time have replaced TTYs in many places around the world.
92  Families: Partnerships in Practice

Table 3.3  The National Parent Project Recommendations for Professionalsa

Listen to Us Families emphasized time and again the importance

of active listening skills. Families want professionals
to “hear” them and acknowledge their issues and
concerns.
Respect Our Professionals may not always agree with a family’s
Opinions perspective, but families believe they are the experts
when it comes to what they want and need for their
family.
Respect Our Families differ in their reactions and feelings about
Feelings having a deaf child. Professionals sometimes have
preconceived ideas about what families should feel
and this may ultimately damage the relationship
between the family and the professional.
Be Knowledgeable Families expect professionals to have accurate
and current information to share with them.
If the professional does not know the answer
to a question, families appreciate it when they
acknowledge that they do not know. Families
expect, however, the professional to obtain the
information or help the family find the resources
and information they want.
Be Honest Although not all news is good news, families want
professionals to tell them the truth as they know it
at the time.
Tell Us Everything Families do not want professionals to control the
information they receive. They expect professionals
to provide comprehensive information regardless
of their own professional opinions. Families
do not want professionals to decide when the
family is “ready” to receive specific information.
Professionals should ask families, rather than make
assumptions, about what families want or need to
know and when they need it.
Treat Us with Families do not like it when professionals seem to
Respect “talk down” to them. Families expect to be treated
as the adults they are with years of experience to
offer.
(continued)
 Sass-Lehrer et al.  93

Table 3.3  (Continued)

Provide Resources Families want professionals to connect them with

for Support other families with deaf children and to provide
them with resources to extend their understanding
and obtain additional support.
Be Patient with Us Families want professionals to show patience with
them. Understanding and adjusting to having a
child who is deaf or hard of hearing are processes
that take more time for some families than others.
Families also change their minds as they acquire
more information and learn more about their
child. Learning everything they need to know
and developing the skills to promote their child’s
early language (i.e., learning to sign or learning
to support their child’s listening skills) take time.
Families want professionals to be patient with them
along this journey.
Communicate Families appreciate professionals who are good
Clearly (sign communicators, and who can explain information
or spoken to them in ways they can understand. Families
language, want professionals to be sensitive to their ability
or through to process new information. Families would
interpreters) like information shared in a way that is most
meaningful and accessible to them.
a
Meadow-Orlans, K., Mertens, D., & Sass-Lehrer, M. (2003). Parents and their deaf chil-
dren: The early years. Washington, DC: Gallaudet University Press.

skills they need to help their child develop and learn. Sally Ann recog-
nized that to be an effective provider there are many sets of skills that
she needs. Underlying her effectiveness is her ability to establish a trust-
ing and mutually respectful relationship with Li and Sunny. This requires
her commitment to developing cross-cultural competence not only
as it relates to cultural, linguistic, educational, and economic diversity,
but also regarding the many ways in which people embrace being deaf
(Leigh, 2009). She will need to examine her beliefs and attitudes con-
tinuously, and be mindful of generalizations or judgments that affect her
perceptions about what is best for every infant or toddler who is deaf or
hard of hearing and their family.
94  Families: Partnerships in Practice

Working in partnership with families is an interactive learning pro-

cess that involves getting to know one another and developing a mutu-
ally caring relationship. Just as Li and Sunny will depend upon the early
intervention team for critical information, resources, and guidance, the
team of professionals will also rely on Li and Sunny to help them under-
stand their unique experiences and how the team of professionals can
help them realize their hopes and dreams.
A family strength-based focus will permeate all aspects of Kevin’s early
intervention programming from the initial screening through transition
to preschool. The team will recognize Li and Sunny as the constant in
their son’s life, and Sally Ann and the others on the team as transitory.
Li and Sunny will gradually acquire the information they need to un-
derstand Kevin’s abilities and needs and how they can best support his
development. Sally Ann will provide Li and Sunny with information and
resources to help them understand what it means to be deaf. She will pay
particular attention to Li and Sunny’s needs for support and will con-
nect them with other families who have deaf or hard-of-hearing chil-
dren. She will also ensure that they have ample opportunities to develop
meaningful relationships with adults who are deaf, including those with
Chinese backgrounds. She will need to monitor how well they are doing
as a family and how services might be improved to better meet their
changing needs.
Sally Ann is in a privileged position as she embarks on this journey
with Li, Sunny, and Kevin. As partners along on this journey, they will
encounter many interesting and exciting experiences, some bumps in
the road, and maybe even some detours. Ultimately, with the guidance
and support of the whole team, Li and Sunny will acquire the confidence
and competence they need to support Kevin’s overall development and
become strong advocates for him through his growing years.

SUGGESTED ACTIVITIES

1. View the TED talk by Author Andrew Solomon on his best selling book, Far
from the Tree http://www.ted.com/talks/andrew_solomon_love_no_mat-
ter_what.html. Select three quotes that have special meaning to you and
 Sass-Lehrer et al.  95

your work with families with deaf or hard-of-hearing infants and toddlers.
Identify sections from this chapter that relate to Dr. Solomon’s research.
2. What does family involvement mean to you? Think about how your fam-
ily was involved in your education, or if you have children, how you are
involved with their education. How does your experience compare with the
research findings and recommendations in this chapter?
3. Research a family support program that focuses on families with young
children who are deaf or hard of hearing. Consider the feasibility of
offering this type of program in your community. How would you determine
family interest? What resources would you need? How would you deter-
mine their effectiveness?
A Guide-by-Your-Side
http://www.handsandvoices.org/services/guide.htm.
Shared Reading Program
http://www.gallaudet.edu/clerc_center/information_and_resources/
info_to_go/language_and_literacy/literacy_at_the_clerc_center/wel-
come_to_shared_reading_project.html.
Integrated Reading Program
http://www.csdb.org/intergrated-reading-project/.
Family Sign Language Program
h t t p : / / w w w. n e c c . m a s s . e d u / g a l l a u d e t / p r o g r a m s / f a m i l y - s
ign-language-program/.
4. Complete the “Circles of my Multicultural Self”
Go to http://www.edchange.org/multicultural/activities/circlesofself_
handout.html and complete the questions on this page. Then go to
“Circles of my Multicultural Self” activity www.edchange.org/multicul-
tural/activities/circlesofself.html.
Complete activities 1–3. Next consider how stereotypes of various
aspects of your identity have influenced you and your perceptions of
others who share or have identities different from you.

RECOMMENDED RESOURCES

1. Alexander Graham Bell Association for the Deaf and Hard of Hearing
This association supports the development of listening and spoken lan-
guage. The AGBell website has an entire section devoted to families.
http://www.agbell.org.
96  Families: Partnerships in Practice

2. American Society for Deaf Children

This association advocates for families with children who are deaf or hard
of hearing and supports all language and communication opportuni-
ties. http://www.deafchildren.org.
3. Aussie Deaf Kids
This association, based in Australia, provides information, resources, and
support for families with children who are deaf or hard of hearing.
http://www.aussiedeafkids.org.au.
4. Boystown Press
Boystown Press disseminates books, DVDs, and other materials for fami-
lies of children who are deaf, hearing, or hard of hearing. The Home
Team: Early Intervention Illustrated DVD focuses on best practices for
family involvement and family-centered early intervention. http://www.
boystownpress.org/index.php/deaf-hard-of-hearing/early-intervention.
html.
5. BANDTEC: A Network for Diversity Training
BANDTEC’s mission is to promote the creation of an equitable society for
children and their families by providing a continuum of professional
development and leadership in diversity issues among early education
and care providers.
Contact BANDTEC at [email protected].
6. Fédération Européenne des Parents d’Enfants Déficients Auditifs
FEPEDA is a nongovernmental umbrella organization that represents
associations of parents and friends of deaf and hard-of-hearing chil-
dren in Europe. Members include national and regional organizations
as well as individuals and small groups from all over the European
Union, Central and Oriental Europe, and the Community of Independent
States.
http://www.fepeda.net/.
7. Lynch, E.  W., & Hanson, M.  (2011). Developing cross-cultural com-

petence:  A  guide for working with children and their families (3rd ed.).
Baltimore, MD:  Brookes Publishing Co. and Hanson, M., & Lynch,
E. (2013). Understanding families: Supportive approaches to diversity, dis-
ability, and risk (2nd ed.). Baltimore, MD: Brookes Publishing Co.
These two books address the knowledge, skill sets, and dispositions nec-
essary to enhance early intervention professionals’ abilities to provide
culturally competent services to families with diverse backgrounds and
challenging home or environmental conditions.
 Sass-Lehrer et al.  97

8. Hands & Voices

Hands & Voices is a parent-driven organization with chapters in many
states around the United States and around the world. For a descrip-
tion of the program A Guide-by-Your-Side, Go to http://www.handsand-
voices.org/services/guide.htm.
9. National Center for Cultural Competence (NCCC)
The mission of NCCC is to support the design, implementation, and
evaluation of culturally and linguistically competent services. The
Center provides information for programs and professionals includ-
ing assessments, training, and resources. http://nccc.georgetown.
edu/.
10. National Deaf Children’s Society: Informed choice, families and deaf chil-
dren: Professional handbook. London, England: University of Manchester.
This document explores the concept of informed choice related to the
decisions families make on behalf of their children and the role of pro-
fessionals. http://dera.ioe.ac.uk/1929/1/informed%20choice%20
families%20and%20deaf%20children%20-%20professional%20hand-
book.pdf.
11. National Deaf Children’s Society: Helping you choose: Making informed
choices for you and your child. London, England: University of Manchester.
http://www.ihs.manchester.ac.uk/events/pastworkshops/2012/
CHRN200312/handbook.pdf. This document explores the concept
of informed choice from a family perspective.

REFERENCES
Allen, R.  I., & Petr, C.  G. (1996). Toward developing standards and measure-
ments for family centered practice in family support programs. In G. H. S.
Singer, L. E.  Powers, & A. L.  Olson (Eds.), Redefining family support (pp.
57–86). Baltimore, MD: Brookes Publishing Co.
Bailey, D., Raspa, M., & Fox, L. (2012). What is the future of family outcomes and
family-centered services? Topics in Early Childhood Special Education, 31(4),
216–223. doi:10.1177/0271121411427077
Beach Center on Disability. (2014). Family quality of life. Retrieved from http://
www.beachcenter.org
Benedict, B. S., & Sass-Lehrer, M. (2007). Deaf and hearing partnerships: Ethical
and communication considerations. American Annals of the Deaf, 152(3),
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98  Families: Partnerships in Practice

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4   L egislation, Policies, and Role of Research
in Shaping Early Intervention
Barbara Raimondo and Christine Yoshinaga-Itano

Mr. and Mrs. Zilmer, who live in the eastern part of the United
States, would like both speech-language therapy services for their
12-month-old child, Amanda, and American Sign Languagea (ASL)
instruction for Amanda and the whole family. They have heard that
there are benefits to having children learn both spoken language and
ASL, and they don’t want to limit Amanda’s language access or devel-
opment. The Zilmers are unaware of their rights, legislative require-
ments, or research on this topic and ask their service coordinator, Lou
Ann, if this makes sense to her and if it is allowable. Lou Ann is not
an expert in listening and spoken language development or ASL, and
this is the first family with a deaf child with which she has worked. She
wants to do whatever she can to facilitate Amanda’s development and
support the Zilmers, but is not sure of the resources available.

a
American Sign Language is the visual–gestural language of the Deaf Community in the United
States and parts of Canada. Each country has one or more signed languages. Signed languages,
like spoken languages, have linguistic structure and grammatical rules.

105
106  Shaping Early Intervention

GUIDING QUESTIONS

1. What services does the law require to be provided to deaf and hard-of-
hearing children and their families in the United States? In what ways can
law and policy be enhanced?
2. What does the evidence say regarding the use of different language and
communication modalities with deaf and hard-of-hearing children?
3. What constitutes “best practice” in early intervention for deaf and hard-of-
hearing children and their families?

COMPETENCIES ADDRESSED IN THIS CHAPTER

1. Professional and Ethical Behavior:  Fundamentals of early intervention

practice, legislation, policies, and research
2.
Language Acquisition and Communication Development:  Typical
Development, Communication Approaches Available to Children with
Hearing Loss, and Impact of Hearing Loss on Access to Communication

INTRODUCTION

Mr. and Mrs. Zilmer’s request for early intervention services that will
promote Amanda’s development and support the family strikes at the
main purpose of early intervention. The Zilmers were fortunate that
Amanda’s hearing levels were identified early, giving them ample oppor-
tunity to learn what is known about early intervention programs, explore
the language and communication opportunities available, and under-
stand their rights to services. This chapter summarizes the landscape
of laws and policies related to early intervention programs and services
for infants and toddlers who are deaf or hard of hearing in the United
States. Evidence-based practices are presented along with implica-
tions for early intervention providers and program leaders. The chapter
addresses special issues that impact the quality of programming and the
 Raimondo and Yoshinaga-Itano  107

rights of children and families regarding language and communication

development.

EARLY HEARING DETECTION AND INTERVENTION (EHDI)

LEGISLATION IN THE UNITED STATES

EHDI systems were established to prevent language and other develop-

mental delays that result when a deaf or hard-of-hearing child is identified
late and does not receive appropriate early intervention from specialized
providers. Families such as the Zilmers, with very young deaf children, have
a different experience today than most families 15 or 20 years ago. Prior to
the establishment of EHDI systems, the average age of identification of a
deaf child was 2½ years old. Hard-of-hearing children were often identi-
fied later. Each state in the United States has established an EHDI system
based on the principles of 1-3-6: screening by age 1 month, identification by
3 months, and early intervention by 6 months [Joint Committee on Infant
Hearing (JCIH), 2007]. The establishment of EHDI systems grew out of
research that demonstrated that children who were identified by 6 months
and received appropriate early intervention specific to their needs as a deaf
or hard-of-hearing child from a qualified provider attained language out-
comes within the normal range of development. These outcomes were sig-
nificantly better than for those children who did not have similar benefits
(Yoshinaga-Itano, Sedey, Coulter, & Mehl, 1998).
Funding in the United States for these programs is provided, in part,
through the Early Detection, Diagnosis, and Treatment Regarding
Hearing Loss in Newborns and Infants Act (42 U.S.C. § 280g-1) first
passed in 1999 and reauthorized in 2010.1 This Act is commonly referred
to as the Early Hearing Detection and Intervention (EHDI) Act. For states
to receive funds through this law their practices and policies must con-
form to the Act’s requirements. The Act envisions a collaborative effort
around supporting families and children. For example, the Act defines
“early intervention” in two ways:

1. “Early intervention includes referral to and delivery of informa-

tion and services by schools and agencies, including community,
108  Shaping Early Intervention

consumer, and parent-based agencies and organizations and other

programs mandated by [P]‌art C of the Individuals with Disabilities
Education Act [20 U.S.C. §1431 et seq.], which offer programs spe-
cifically designed to meet the unique language and communication
needs [emphasis added] of deaf and hard-of-hearing newborns,
infants, toddlers, and children.”
2. “The term ‘early intervention’ refers to providing appropriate services
for the child with hearing loss … and ensuring that families of the child
are provided comprehensive, consumer-oriented information about the
full range of family support, training, information services, and language
and communication options and are given the opportunity to consider
and obtain the full range of such appropriate services, educational and
program placements, [emphasis added] and other options for their child
from highly qualified providers” [42 U.S.C. § 280g-1(e)(3)].

The United States EHDI law requires relevant federal agencies, includ-
ing the Centers for Disease Control and Prevention (CDC) and the
National Institutes of Health (NIH), to coordinate and collaborate with a
range of stakeholders in the development of policy and the implementa-
tion of this law. Stakeholders include “consumer groups of and that serve
individuals who are deaf and hard-of-hearing and their families; … per-
sons who are deaf and hard-of-hearing and their families; other qualified
professional personnel who are proficient in deaf and hard-of-hearing
children’s language and who possess the specialized knowledge, skills, and
attributes needed to serve deaf and hard-of-hearing newborns, infants,
toddlers, children, and their families …” [42 U.S.C. § 280g-1 (c)(1)].
The EHDI legislation envisions systems at the local, state, and national
levels that support collaboration with diverse groups of people with dif-
ferent areas of expertise and experiences who can provide guidance and
advice. The reason for this is to ensure that the systems are sensitive to the
needs of families and children and are as effective as they can be. However,
the law does not provide outcome measures or guidelines for monitoring
these requirements, so it is not possible to know how effectively these
mandates are being carried out. Only anecdotal evidence is available to
gauge how well agencies carry out these collaboration mandates.
 Raimondo and Yoshinaga-Itano  109

At the state level, state advisory panels, committees, or councils pro-

vide recommendations to their respective state’s EHDI systems. Because
each member of the advisory committee brings a particular perspective,
it is important that members of the advisory committee represent all
stakeholder groups. Some states mandate the composition of member-
ship of the state advisory panel. For example, the state of Maryland EHDI
law requires its advisory council include a representative of the school for
the deaf and a representative from the state association of the deaf, as well
as two parents of deaf or hard-of-hearing children, and others (Maryland
Health-Gen Code § 13-603).
Most states do not include such a requirement. In some states there
is an informal practice of including at least one deaf or hard-of-hearing
person on the advisory panel. Although this is a step in the right direc-
tion, all EHDI state systems should strive to be responsive to the life
experiences of people who are deaf or hard of hearing by ensuring their
participation on state advisory panels. In keeping with the intent of the
United States federal EHDI law, all states should take steps to ensure that
their panels are inclusive of deaf and hard-of-hearing community mem-
bers. Without the participation of deaf or hard-of-hearing individuals,
state advisory panels miss out on important information and perspec-
tives that can help them better serve families such as the Zilmers.

EARLY INTERVENTION LEGISLATION

“Part C” is the early intervention section of the United States Individuals

with Disabilities Education Act (IDEA). IDEA governs the education of
eligible children with disabilities and authorizes services in every state to
serve deaf and hard-of-hearing infants and toddlers and their families.
The intent of Part C is to identify the desired outcomes for children and
families and to make available the services and supports they need to
achieve those outcomes. It is worth noting that some states recognized
the need for early intervention programs for deaf babies in the early
1970s, well before the passage of Part C in 1986 (Bruce & Illinois State
University, 1986).
110  Shaping Early Intervention

Eligibility
For families such as the Zilmer family to be eligible for early interven-
tion services under Part C of IDEA, their infant or toddler must have
a developmental delay or diagnosed condition, such as a “sensory
impairment,” that has a “high probability of resulting in developmental
delay” (34 C.F.R. § 303.21). There is wide state-to-state variability (Uhler,
Thomson, Cyr, Gabbard, & Yoshinaga-Itano, 2014) regarding the eligibil-
ity of children with hearing in the mild range and with unilateral hear-
ing predominantly due to states’ interpretation regarding the amount of
developmental delay needed to qualify for services. However, this may
not be the best approach. A committee convened by the IDEA Infant and
Toddler Coordinators Association and the National Center for Hearing
Assessment and Management (2011) notes “There is abundant evidence
that permanent hearing loss of any degree and configuration results in
developmental delays if appropriate early intervention is not provided”
(p. 2). They state, “Ideally, Part C eligibility guidelines would encompass
all infants with permanent hearing loss of any degree for either ear” (p.
3). Amanda’s hearing levels are in the severe to profound range, making
her eligible for services in her state.

Individualized Family Service Plan

When the Zilmers were referred to early intervention, an Individualized
Family Service Plan (IFSP) for Amanda and the family was developed.
The IFSP is a written plan that outlines the services families and children
will receive. It is based on information about the child and family and is
written by a multidisciplinary team that includes professionals with at
least two different disciplinary areas of expertise that relate to the child’s
needs and the priorities and concerns of the family. The IFSP is evaluated
once a year and is reviewed every 6 months, or more if needed or if the
family requests. Before the IFSP was developed, the Zilmers participated
in the following:

1. A multidisciplinary assessment of Amanda and identification of ser-

vices appropriate to meet her needs. Appropriate qualified personnel
 Raimondo and Yoshinaga-Itano  111

working with the team assessed her cognitive development, physi-

cal development, including vision and hearing, communication,
social–emotional development, and adaptive development.
2. A family-directed assessment of the resources, priorities, and con-
cerns of the Zilmers. This was based on discussions with the fam-
ily. At their discretion the Zilmers shared with the multidisciplinary
team the resources they have to support Amanda’s development,
for example, the family’s skills, support from extended family, and
access to information. The Zilmers expressed their priorities for
Amanda, such as developing age-appropriate language in spoken
language and sign language, and meeting other developmental
milestones.
The Zilmer family explicitly requested spoken language and ASL
services. As equal members of the IFSP team their priorities needed
to be considered. The family also shared concerns. For example,
they were worried about locating quality childcare providers who
would be skilled in communicating with deaf or hard-of-hearing
toddlers.
3. Identification of the supports and services necessary to help the
Zilmers meet the needs of their child.

Services offered under IDEA (Part C) include (1) family training,

counseling, and home visits; (2) special instruction; (3) speech-language
pathology and audiology; (4) sign language and cued language servicesb;
(5) vision services; (6) assistive technology devices (such as hearing aids)
and assistive technology services; and (7) other services (34 C.F.R. §
303.13).
The IFSP also must include the “name of the service coordinator from
the profession most relevant to the child’s or family’s needs” [34 C.F.R. §
303.344(g)(1)]. In this case, Lou Ann is not from a deaf education back-
ground and thus does not meet this criterion. When service coordina-
tors are not familiar with the language and communication development

b
Cued Speech or Cued Language is a phonemically based visual communication system that
uses hand shapes and hand positions with spoken English or other spoken languages as a sup-
plement to speechreading
112  Shaping Early Intervention

of deaf and hard-of-hearing infants and toddlers it becomes more dif-

ficult to for them to identify and help obtain the necessary services. (See
Chapter  9, Individualized Family Service Plans and Programming, for
more information.)

Natural Environments
According to Part C, services must be provided in the “natural envi-
ronment” to the “maximum extent appropriate” and provided in other
settings only when “early intervention services cannot be achieved
satisfactorily in a natural environment” (34 C.F.R § 303.126). If ser-
vices are not provided in the natural environment, a “justification”
must be written [34 C.F.R. § 300.344(d)(1)(II)(A)]. Natural environ-
ments are “settings that are natural or typical for a same-aged infant
or toddler without a disability,” and “may include the home or com-
munity settings” (34 C.F.R. § 303.26). Lou Ann was aware of a special-
ized program for deaf and hard-of-hearing infants and toddlers in the
area but was concerned that it did not meet the legal definition of nat-
ural environment. The program provided a “play group” twice a week
for deaf and hard-of-hearing children run by teachers of the deaf,
speech-language pathology services, audiology services, and family
classes, including sign language classes. It also provided services in
the home. She believed this program met the needs of Amanda and
her family.
In 2006, the Joint Committee of the American Speech-Language-
Hearing Association (ASHA) and the Council on Education of the Deaf
(CED) provided clarification and recommendations on selecting natural
environments for families and their young deaf or hard-of-hearing chil-
dren. The Committee stated, in part:

Natural environments for deaf or hard-of-hearing infants

and toddlers are environments that include family members
and caregivers, are developmentally appropriate, and provide
direct communication with adults and peers through one or more
fully accessible natural languages (e.g., American Sign Language,
 Raimondo and Yoshinaga-Itano  113

spoken English, or Spanish). Natural signed and spoken languages

are languages that originate and develop over time through ongo-
ing social interaction among members of a cultural community.
Natural environments include the home, childcare center, school,
or other settings where the child’s language(s) and communication
modality (or modalities) are used by fluent adult users and where
peers are using and/or acquiring the same languages through sim-
ilar modalities. Natural environments should be easily accessible
to families and provide opportunities for families to meet with
professionals who are knowledgeable about language and commu-
nication development in children who are deaf or hard of hearing
and to interact with other families who have similarly developing
children, whether hearing, deaf or hard of hearing. Natural envi-
ronments for infants and toddlers who are deaf or hard of hear-
ing and their families should be places where all have full access
to language and communication through visual, auditory, and/or
tactile communication systems specific to that child and family.
[American Speech-Language-Hearing Association (ASHA) and
the Council on Education of the Deaf (CED) Joint Committee,
2006.]

Evidence-Based Practices in Early Intervention

Lou Ann, the Zilmer’s service coordinator, in collaboration with spe-
cialists whose expertise is in working with infants and toddlers who
are deaf or hard of hearing and their families, has the responsibility of
understanding, sharing, and implementing recommendations for best
practice in early intervention. An important question for families is how
they will be able to determine whether an early intervention program is
providing services that follow best practices. Buysse, Wesley, Snyder, and
Winton (2006) offer the following definition for evidence-based prac-
tice for the early childhood profession field:  “Evidence-based practice
is a decision-making process that integrates the best available research
evidence with family and professional wisdom and values” (p. 12). They
114  Shaping Early Intervention

recommend using the best available research evidence, professional

expertise, defined as one’s craft knowledge and experience, and family
and consumer values that take into account their beliefs and expectations
in making decisions.
In a 2010 publication Evidence-Based Practice in Educating Deaf
and Hard-of-Hearing Students, Spencer and Marschark (2010) address
the challenge of applying evidence-based practices in the field of
deaf education. They suggest that because of the inherent limita-
tions and gaps in the research available, consensus across findings
from divergently conducted studies with diverse populations might
be used to develop conclusions on issues related to early intervention
as well as other issues in the education of deaf children (Spencer &
Marschark, 2010). In fact, two consensus documents on best prac-
tices in early intervention published in 2013 developed a set of goals
and recommendations for early intervention programming from the
existing evidence with teams of experts that included family mem-
bers, professionals, and people who are deaf. These documents are
discussed below.

Child Outcomes and Quality of Early Intervention

Research in the United States with programs that have specialized early
intervention programs has shown that early identification and effec-
tive intervention can result in significantly better outcomes (Moeller,
2000; Yoshinaga-Itano et al., 1998). The Zilmers should expect Amanda
to make progress across all developmental domains given compre-
hensive services provided by well-qualified specialists. The early in-
tervention program should provide the Zilmers with the information
and guidance that will give Amanda the best opportunity to obtain
age-appropriate outcomes in all developmental areas including lan-
guage and communication.
Studies that have demonstrated strong communication development
in their early-identified populations had early intervention providers
with a high level of knowledge and expertise demonstrated by their
professional training, their experience working with children who are
deaf or hard of hearing and their families, and their on-going in-service
 Raimondo and Yoshinaga-Itano  115

education participation (Moeller, 2000; Yoshinaga-Itano et  al., 1998).

These programs provided mentoring from specialists for the early
intervention providers, as well as ongoing progress monitoring with
assessment tools that had normative data on children with typical
development, provided strong family support, and could demonstrate
a high level of family involvement. They also provided families with
opportunities to interact with individuals and professionals who are
deaf or hard of hearing. Children who have developed strong commu-
nication skills by the age of 3 years have developed these skills because
of the high quality of their early intervention support and their family’s
involvement.

Early Intervention Services and Provider Qualifications

The goal of early intervention for deaf and hard-of-hearing infants and
toddlers is to prevent developmental delay. Infants and toddlers with or
without a cognitive or other developmental delay should be expected to
achieve outcomes much like those of their hearing peers with similar
characteristics (Yoshinaga-Itano et al., 1998), but only when appropriate
and immediate early intervention services are provided by highly quali-
fied providers knowledgeable in early childhood and the implications of
being deaf or hard of hearing.
IDEA requires states to have available adequately trained personnel to
serve children under Part C and their families. Part C of IDEA mandates
that early intervention services “meet the standard of the State in which
the services are provided” [20 U.S.C. § 1432 (4)(D)]. For example, a state
may require early interventionists providing speech-language pathology
services to meet certain licensure requirements.
IDEA provides a list of “qualified personnel,” including special edu-
cators, speech-language pathologists and audiologists, occupational
therapists, and others [34 C.F.R. § 303.13(c)]. IDEA also requires states to
include, as a statewide system component, a “comprehensive system of
personnel development” (34 C.F.R. § 303.18). This system must include
the preparation of early intervention providers who are “fully and appro-
priately qualified to provide early intervention services” under Part C (34
C.F.R. § 303.118).
116  Shaping Early Intervention

Qualified American Sign Language and Spoken

Language Service Providers
Lou Ann wants to support the Zilmer’s request for ASL instruction.
However, she has learned that her state—and other states—do not have
a formal designation or certification process for teaching ASL to families
and is not sure how she will know if the teaching is effective. To follow
best practice protocols for early intervention, states should introduce
standards for the instruction of ASL to families and young children, espe-
cially if there is no professional designation for teaching ASL to infants,
toddlers, and families.
The Joint Committee on Infant Hearing (JCIH) is composed of experts
from audiology, pediatrics, otolaryngology, speech-language pathology,
and deaf education in the United States and periodically issues best prac-
tices documents to guide the field. JCIH position statements and best
practices documents are unique because they have received the endorse-
ment of the educational, medical, audiological, and speech and language
participating organizations. Although the recommendations are not
binding, hearing screening and early intervention programs use them in
establishing and improving their programs. The Supplement to the Joint
Committee on Infant Hearing (JCIH) 2007 Position Statement (2013), a
best practice document specific to early intervention services for infants
who are deaf or hearing (see below), seeks to address the lack of quali-
fied sign language instruction to families by establishing the following
goal:  “Intervention services to teach ASL will be provided by profes-
sionals who have native or fluent skills and are trained to teach parents/
families and young children” (e1329). It further recommends that states
(1) “identify collaborative partners who can assist in the development of
statewide systems capable of providing competent sign language instruc-
tion to families and their infants/children”; (2)  “establish a representa-
tive committee that develops guidelines related to the qualifications of
sign language instructors” (e 1330); and (3) implement steps to establish a
mechanism for monitoring quality.
Early intervention specialists from different disciplines, including
audiologists, speech language pathologists, physicians, psychologists,
 Raimondo and Yoshinaga-Itano  117

and social workers, rarely possess the level of fluency in ASL to provide
ASL instruction to families. The Zilmers live in a state in which there
are no guidelines for competent sign language instructors and should
request an ASL instructor for their family who is a native or fluent user
of ASL.
Early intervention specialists also generally lack sufficient training in
the development of listening and spoken language of infants and tod-
dlers who are deaf or hard of hearing. The Supplement to the JCIH 2007
Position Statement (2013) states in Goal 3b, “Intervention services to de-
velop listening and spoken language will be provided by professionals
who have specialized skills and knowledge” (e1330). Unfortunately, most
families with newly identified children who are deaf or hard of hearing
have early intervention providers who do not have specialized skills in ei-
ther listening and spoken language or in the early development of visual
communication (Arehart, Yoshinaga-Itano, Gabbard, Stredler-Brown, &
Thomson, 1998).
Early intervention systems should address gaps in training at all
levels in the following manner:  (1)  establish professional develop-
ment programs designed to upgrade the skills of early intervention
providers in the areas of listening and spoken language; (2) hire early
interventionists who are fluent in ASL and provide ongoing profes-
sional development to enhance the ASL skills of all professionals; and
(3) implement a mentorship program with supervised observations to
ensure quality of services in listening and spoken language and visual
language learning.

Early Intervention System Accountability

As with EHDI, the specific way Part C is implemented varies from
state to state. In some states the lead agency is a health department and
in others it is an education department. However, the quality of the
early intervention available to families is less dependent upon which
is the lead agency and is related more to the expertise and knowledge
of the personnel responsible for early intervention programming. As
mentioned, each United States state has enacted its own regulations
118  Shaping Early Intervention

for Part C implementation resulting in different child eligibility cri-

teria, specialized resources, and professional expertise available.
Services may also vary from one local district to another. Parents’ and
children’s rights under Part C are protected by a series of procedural
safeguards, which include protection of confidentiality, right to con-
sent to or decline services, notice explaining the actions of the Part C
agency pertaining to the child, and dispute resolution options, includ-
ing mediation and filing a formal complaint.
The United States Department of Education has established a sys-
tem to monitor state compliance with IDEA Part C, requiring states to
collect data and report on 14 indicators (United States Department of
Education Office of Special Education Programs, n.d.).2 Unfortunately,
the indicators are quite broad, and provide very little information on or
accountability for infants and toddlers who are deaf or hard of hear-
ing and their families. States are not required to report data based on
the child’s hearing status or an identified disability category. Currently
there is no national database tracking either long-term or short-term
outcomes for these children.
However, research known as NECAP (National Early Childhood
Assessment Project:  Deaf/Hard of Hearing) is establishing state-wide
databases on developmental outcomes. The purpose of this project was
to establish state databases of the development of children receiving early
intervention services. Currently, 15 states are actively attempting to cre-
ate state outcome databases and to report it on their EHDI databases
(Yoshinaga-Itano & Sedey, 2013). State outcome data will lead to the
development of a national database and provide an important measure
for how well states support the language development of their deaf or
hard-of-hearing infant and toddler populations.

Transition from Early Intervention to Part B of IDEA

Once Amanda turns 3 years old, she may or may not be eligible for services
under Part B of IDEA. Part B is the section of the law that covers children
ages 3–21 years old. Similar to Part C, Part B is designed to address the
academic, developmental, and functional needs of the child [34 C.F.R. §
 Raimondo and Yoshinaga-Itano  119

300.324(a)(1)(iv)]. Part B requires that schools provide an eligible child

with a Free Appropriate Public Education (FAPE) in the Least Restrictive
Environment (LRE) based on an Individualized Education Program (IEP)
that is assessment based. According to Part B, the rights of the child and
family are protected by procedural safeguards.
To be eligible for special education and related services, Amanda must
have “deafness” or a “hearing impairment” that adversely affects her edu-
cational performance and because of this, requires special education and
related services (34 C.F.R. § 300.8). Adverse effect is typically measured
through standardized testing based on milestones of children with typical
development. The criteria (e.g., two standard deviations below the mean
in two developmental areas) can vary by state. Knowledgeable providers
understand the areas of development most at risk for developmental delay
when a child is deaf or hard of hearing and choose developmental instru-
ments accordingly. For example, the assessment of social–emotional
and pragmatic language development should be included in the overall
assessment protocol because these areas predict future academic per-
formance (Goberis, Dalpes, Abrisch, Baca, & Yoshinaga-Itano, 2012).
Deaf and hard-of-hearing children at 3 years of age, even when they have
strong language skills in some areas, typically have delays in expressive
syntax (Moeller et al., 2012), pragmatic language (Goberis et  al., 2012),
articulation (Yoshinaga-Itano & Sedey, 2000), and auditory skill develop-
ment. (See Chapter 7, Developmental Assessment.)
More and more children are exhibiting age-appropriate development by
3 years of age in a number of areas, raising the probability that increasing
numbers of children may be deemed ineligible for services under Part B.
If a child who is deaf or hard of hearing has made a 1 year gain in devel-
opment for each year of life, then it may be assumed that the child will
continue this rate of development in the school-age period. Many children,
however, require continued services to remain on age level academically. It
is ironic that in some cases services are discontinued because the early inter-
vention services the child received were successful. If a child who has been
denied services falls behind, he or she may again become eligible for spe-
cial education services, but by then may require more intensive program-
ming to address deficits. Part B eligibility criteria should be interpreted or
120  Shaping Early Intervention

modified to permit the continuation of services or, at a minimum, provide

close monitoring of progress for children who are deaf or hard of hearing
to prevent or remedy any gaps or delays in development.
Thus, it is rarely appropriate for children who are deaf or hard of
hearing to be denied special education services when they transi-
tion from early intervention. For most children at this young age, the
failure to provide appropriate services can result in the emergence of
significant developmental delays that did not exist in the early years.
Appropriate educational services should be provided to ensure that
children who are deaf or hard of hearing have the ability to make
the same rate of developmental gain as they did in early intervention
under Part C programs, that is, 1  year of language gain for 1  year of
life. Children should not have to fail before they are eligible to receive
appropriate services.
Relevant service agencies must work to facilitate a smooth tran-
sition to Part B services for the child and family. Early intervention
under Part C outlines steps that must be taken and timelines that must
be followed. If the child is not eligible for services under Part B, the
lead agency should conduct a conference among the family and rel-
evant agencies to discuss the services for which the child is eligible. In
the United States a deaf or hard-of-hearing child—whether or not that
child is eligible for IDEA—is eligible for accommodations under other
laws:  Section 504 of the Rehabilitation Act and the Americans with
Disabilities Act.
Section 504 of the Rehabilitation Act (29 U.S.C. §794) prohibits dis-
crimination by entities that receive federal financial assistance. A  pre-
school or educational program may be required to provide an assistive
listening system, sign language services, or other means of making
the program accessible, depending on the needs of the child. This Act
also applies to programs such as childcare centers that receive federal
assistance.
The Americans with Disabilities Act (ADA) (42 U.S.C. §12101 et
seq.) requires programs run by state and local governments, such as
schools, and places of public accommodation, such as public or pri-
vate childcare centers, to make themselves accessible and to provide
 Raimondo and Yoshinaga-Itano  121

“effective communication” to individuals who are deaf or hard of hear-

ing. A key difference between IDEA and Section 504 and ADA is that
IDEA requires individualized services to help the child progress devel-
opmentally and academically, while 504 and ADA focus simply on the
communication access to the program provided to the child. Section
504 and the ADA do not require services to help the child progress
developmentally or academically but provide access to programs avail-
able to all children.
More information about IDEA and educational advocacy can be found
in the Recommended Resources.

Communication Planning
Some states have adopted use of a communication plan to ensure that
supports are provided to maintain or enhance children’s language
and communication development. This is especially important when
children transition from early intervention. Part B of IDEA includes
several “special factors” provisions for educational placement and
services, including some tailored to deaf or hard-of-hearing children
and youth:

in the case of a child who is deaf or hard of hearing, [the child’s

Individualized Education Program team must] consider the
child’s language and communication needs, opportunities for
direct communications with peers and professional personnel in
the child’s language and communication mode, academic level,
and full range of needs, including opportunities for direct instruc-
tion in the child’s language and communication mode. [34 C.F.R.
§ 300.324(a)(2)(iv)]

A communication plan may be included in the child’s Individualized

Education Program (IEP) when the child transitions from early inter-
vention. The plan documents the child’s primary language and com-
munication mode(s) and describes the specific needs for language and
communication access throughout the school day. The plan also identi-
fies the language and communication supports needed by the student to
participate in and make progress in the general education curriculum.
122  Shaping Early Intervention

(See, e.g., Pennsylvania Department of Education, 2011.) When Amanda

is old enough to transition to preschool, her communication plan might
include opportunities to interact with peers and adults who are deaf or
hard of hearing, access to listening and spoken language services, support
to ensure appropriate function and use of her assistive listening technol-
ogy, and sign language instruction to enhance her knowledge of and abil-
ity to use ASL.

Parent Counseling and Training

Parent counseling and training, an IDEA service, is intended to help
parents understand the special needs of their child; provide them with
information about child development; and help them acquire the skills
necessary to allow them to support the implementation of their child’s
IEP or IFSP [34 C.F.R. § 300.34(c)(8)]. The United States Department
of Education has long recognized that sign language instruction can be
provided to families under these provisions. In 1986, the Department
stated “. . . an IEP for a deaf child could include training parents to
use the mode of communication that their child uses as part of an
educational program” (United States Department of Education, 1986).
In 1991, a policy letter from the Department specifically mentioned
sign language instruction as a matter of “entitlement to a related ser-
vice” (United States Department of Education, 1991). And United States
Department of Education guidance on the 1997 reauthorization of
the Individuals with Disabilities Education Act stated “The IEP team
may … wish to consider whether there is a need for members of the
child’s family to receive training in sign language in order for the child
to receive a Free Appropriate Public Education” (Appendix A to Part
300—Notice of Interpretation, p. 12472). If Amanda is later served
by Part B the Zilmers will be entitled to request this type of training.
Unfortunately, only a minority of programs offer sign language train-
ing to families after their child is 3 years old. Primary caregivers whose
children are preschoolers or older and who use sign language with their
children can use the procedural safeguard mechanisms in IDEA to
 Raimondo and Yoshinaga-Itano  123

request these services if they are not available. Because of the need for
continued support for parents in learning ASL to support their child’s
education, educational programs should make sign language training
more widely available.

Deaf Children’s Bills of Rights

Thus far, 17 states have enacted a Deaf Children’s Bill of Rights (DCBR),3
which enhances IDEA’s principles as applied to deaf or hard-of-hearing
children. These bills of rights address the following, for example:

• specific languages and communication modes, such as American

Sign Language and English, and manual and speech-based
systems
• the availability of deaf and hard-of-hearing role models
• the language proficiency level of personnel in the deaf student’s lan-
guage and communication mode.

(See, e.g., Georgia Deaf Child’s Bill of Rights, 2010.)

While most states’ bills focus on school-age children, some also in-
clude considerations for early intervention. For example, Louisiana’s
DCBR states that children who are deaf or hard of hearing are “entitled to
early intervention to provide for acquisition of solid language bases de-
veloped at the earliest possible age” (Louisiana Deaf Child’s Bill of Rights,
1993). Maine’s bill of rights for deaf children supports eligibility for early
intervention services based on hearing status, regardless of whether
the infant shows signs of developmental delay (Maine State Legislature,
DCBR, n.d.).
The DCBR delineates important elements of a child’s education pro-
gram and setting. It can be an efficient way to support Amanda in her
cognitive, linguistic, and social–emotional development. Referencing
the DCBR in an IFSP meeting can help guide the discussion to focus on
the factors most relevant for supporting Amanda’s overall development
and can minimize differences in agreement between the school and the
family.
124  Shaping Early Intervention

CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES

The United Nations’ Convention on the Rights of Persons with Disabilities

(CRPD) provides guidance designed to improve disability policies to
nations around the world. Similar to the Americans with Disabilities Act
(ADA), the principles of the CRPD include equality, nondiscrimination,
inclusion in society, accessibility, and respect for inherent dignity. Many
countries do not have a law preventing discrimination based on disability.
The CRPD seeks to ensure that nations across the globe provide people
with disabilities the same rights to live full, satisfying, and productive
lives as people without disabilities. The CRPD was adopted by the United
Nations in 2006, and since then more than 150 nations have ratified it.
Although the CRPD would not change existing law in the United
States, it does require signatory nations to bring their nation’s laws and
practices into compliance with these principles; thus it could have a large
impact on the education of deaf and hard-of-hearing children world­
wide. (See the Recommended Resources.)

BEST PRACTICES AND POLICIES RECOMMENDATIONS

A number of organizations have issued statements regarding what constitute

best practices in early intervention for deaf or hard-of-hearing children and
their families. These statements include reference to roles and responsibili-
ties of service providers (American Speech-Language-Hearing Association,
2010), informed decision making by parents and caregivers (Alexander
Graham Bell Association for the Deaf and Hard of Hearing, 2008), com-
munication access to the curriculum (National Association for the Deaf,
n.d.), teacher qualifications (Conference of Educational Administrators of
Schools and Programs for the Deaf, 2005), recognizing and supporting a
“range of communication possibilities” and having “fluency and expertise
using the communication approach selected by the family” (Moeller, Carr,
Seaver, Stredler-Brown, & Holzinger, 2013), and advocating for the use of
sign language in particular (World Federation of the Deaf, n.d.).
 Raimondo and Yoshinaga-Itano  125

As mentioned earlier, the Joint Committee on Infant Hearing

(JCIH) has developed guidelines that promote best practices in the
early identification and early intervention for young deaf or hard-of-
hearing children. The principles and guidelines of the JCIH are used
by hospitals, audiologists, and early intervention programs to guide
their policies and procedures. The Year 2007 Position Statement
(Joint Committee on Infant Hearing, 2007) includes updated and
expanded recommendations from previous position statements
on newborn hearing screening, audiological evaluation, and early
intervention.
While the JCIH position statements have focused primarily on hear-
ing screening and evaluation, early hearing detection and interven-
tion (EHDI) programs are charged with the responsibility of ensuring
that infants and toddlers confirmed as deaf or hard of hearing have
immediate access to early intervention programs that follow best
practice principles. In 2013, the American Academy of Pediatrics pub-
lished a supplement to the JCIH 2007 position statement focused on
early intervention best practices (Joint Committee on Infant Hearing,
2013). The Supplement to the JCIH 2007 Position Statement describes
12 goals, recommendations, and benchmarks for early intervention
services for families and infants and toddlers who are deaf or hard of
hearing.
In June 2012, a group of international experts, including members of
families and professionals who are deaf or hard of hearing, developed
a consensus document of valid, evidence-based principles to guide
family-centered early intervention with infants and toddlers who are deaf
or hard of hearing (Moeller et al., 2013). The document provides an elabo-
ration of many of the characteristics described in the supplement to the
JCIH 2007 document described above.
These two documents provide an excellent review of the literature.
Since the publication of the JCIH early intervention supplement, a num-
ber of states in the United States have used the document to set goals
including the collection of baseline data. Families, such as the Zilmers,
as well as professionals who serve them, can consult these documents
126  Shaping Early Intervention

and organizations for guidance and information to support their child’s

development and future success.

EFFICACY OF COMMUNICATION AND LANGUAGE PATHWAYS

One significant omission in both of these documents relates to the effi-

cacy of one specific method of communication as compared to another.
The Zilmers have requested services for Amanda’s spoken language
development and ASL. They believe that providing Amanda with both
spoken language and sign language will be beneficial. Lou Ann has ques-
tions about this and has turned to the experts to help her understand
how research can inform practice. She first wanted to know if there was
evidence that one language and communication pathway was better than
another.
There is no easy answer to this question. Currently, there is no com-
parative study with the statistical controls necessary to identify the effi-
cacy of one method or approach to language and communication over
another (e.g., bilingual/bimodal, simultaneous, cued speech, ora–aural).
There are no comparative studies that have randomly assigned families
and children to treatment groups, language (ASL or English), and mode
(visual or auditory) to determine which pathway results in better out-
comes. Several factors make this type of research impossible. First, eth-
ical and legal issues give families the right to informed decision making
and choice that make it inappropriate to assign children to treatment
groups. Additionally, families often choose combinations of different
modalities of communication, making it impossible to compare meth-
ods. Some families choose to learn American Sign Language from a
native or fluent deaf sign language instructor, and may also be receiving
listening and spoken language services. They may choose to speak more
than one spoken language and may use sign language sometimes as ASL
in a visual/manual only communication, or may use sign language simul-
taneously with spoken English in a manually coded form of communica-
tion. This makes it very difficult to compare language use among children
and families.
 Raimondo and Yoshinaga-Itano  127

In addition, individual characteristics of infants and toddlers and their

families make comparisons difficult. Although it is unknown how many
deaf or hard-of-hearing infants and toddlers have disabilities, approxi-
mately 35% to 40% of school-age children who are deaf have additional
disabilities, ranging from cognitive delays or disabilities to developmen-
tal issues that impact motor development (Gallaudet Research Institute,
2008). Many of these children are at risk for accessing language through
a single modality or approach (Yoshinaga-Itano et al., 1998).
With respect to the early childhood years all studies that have con-
trolled the quality of the early intervention services (Moeller, 2000;
Yoshinaga-Itano et al., 1998) have failed to find that one communication
or language approach directly causes better outcomes than another. A
recent study by Nittrouer (2009) compared children who were enrolled
in oral–aural programs and those that were enrolled in sign-supported
speech programs and found no difference in outcomes. Although the
method or approach to communication in this study was defined, the
quality and characteristics of the early intervention program were not
controlled between the two groups. To date, no studies of early interven-
tion programs without a categorical deafness-specific specialized system for
families with infants and children who are deaf or hard of hearing have
been able to demonstrate that children who are identified early have bet-
ter outcomes than those who are identified later.
A survey of research on sign language and spoken language acqui-
sition in deaf children concludes “[T]‌here is no evidence that using a
signed language with deaf and hard of hearing children impedes spoken
language development. Rather, spoken language skills increase as chil-
dren learn more gestures and signs. Proficiency in ASL has been shown
to positively influence spoken language development and the develop-
ment of English literacy in deaf students. It is language that facilitates
spoken language, not the mode of communication” (Baker, 2011).
Therefore, the research indicates that the use of sign language does
not impair and is not detrimental to the development of age-appropriate
language (either spoken or signed) by young children who are deaf or
hard of hearing. There are some studies that indicate that sign lan-
guage can facilitate the fast-mapping of spoken language after cochlear
128  Shaping Early Intervention

implantation when the children also receive high-quality listening

and spoken language intervention services (Hassanzadeh, 2012). (See
Chapter 8, Collaboration for Communication, Language, and Cognitive
Development.)
The Zilmers want Amanda to acquire two languages, and there
is increasing evidence that bilingual language acquisition supports
improved cognitive function (Jasinska & Petitto, 2013; Kovelman, Baker,
& Petitto, 2008). Children who are deaf or hard of hearing have demon-
strated that they are capable of learning more than one spoken language,
more than one sign language such as ASL or another signed language,
both sign language and spoken language, Cued Speech, and can sing and
play musical instruments. As long as the quality of the intervention ser-
vices is high, early-identified children who are deaf or hard of hearing
have demonstrated that they have the capability to be multilingual and
multimodal. The logical conclusion is that bilingual or multilingual lan-
guage acquisition, more than one signed language, more than one spoken
language, or a signed and a spoken language, is beneficial to any child’s
cognitive development.

SUMMARY

Despite compelling research, legislation, and policies around early inter-

vention, there continues to be a gap between recommended best practices
and the quality of early intervention services for infants, toddlers, and
their families. The Zilmer family can and should have access to high-qual-
ity services in ASL as well as high-quality services in listening and spoken
language. The provision of these services should be immediate and at the
earliest age possible. The family should be provided with a service coor-
dinator who understands language and communication learning oppor-
tunities with infants and toddlers who are deaf or hard of hearing. This
professional should coordinate services among the interdisciplinary team
of early intervention service providers to ensure that Amanda’s develop-
ment in all areas is progressing at an appropriate rate and her family is
equipped to meet her language and communication needs.
 Raimondo and Yoshinaga-Itano  129

SUGGESTED ACTIVITIES

1. Interview parents or primary caregivers of newly identified children to learn

about their experiences. What information is provided to them about their
rights and legislation that supports the rights of deaf or hard-of-hearing
children and adults?
2. Survey the early intervention programs available in your state or locality.
What are the qualifications of the providers in regard to provision of ser-
vices to deaf or hard-of-hearing infants and toddlers and their families?
What services are available?
3. After reading the Supplement to the JCIH 2007 Position Statement: Principles
and Guidelines for Early Intervention Following Confirmation That a Child Is
Deaf or Hard of Hearing (Joint Committee on Infant Hearing, 2013), check
out the early intervention program where you live to see if it conforms to
those recommendations. If there are goals that are not addressed, what
steps should be taken to improve the program?

RECOMMENDED RESOURCES

1. American Speech-Language-Hearing Association (ASHA).

This website provides documents, references, resources, and products for
audiologists and speech-language pathologists working in early inter-
vention. See www.asha.org.
2. Cheryl DeConde Johnson, Janet DesGeorges, and Leeanne Seaver. (2013).
Educational Advocacy for Students Who Are Deaf or Hard of Hearing: The
Hands & Voices Guidebook. Boulder, CO: Hands & Voices, Inc.
This book provides families and professionals with a resource focused
on educational advocacy for deaf or hard-of-hearing children. See http://
www.handsandvoices.org/resources/products.htm#astra.
3. IDEA Infant & Toddler Programs Coordinators Association (ITCA).
ITCA is a nonprofit corporation to promote assistance, cooperation, and
exchange of information in the administration of Part C. See http://
www.ideainfanttoddler.org.
4. Joint Committee ASHA-CED (2006). Natural environments for infants and
toddlers who are deaf or hard of hearing and their families.
130  Shaping Early Intervention

This document provides guidance on how to select natural environ-

ments for deaf and hard-of-hearing infants and toddlers and their
families, advocates for appropriate environments, and provides
resources for further information. See http://www.asha.org/aud/
Natural-Environments-for-Infants-and-Toddlers/.
5. Joint Committee on Infant Hearing.
The Joint Committee on Infant Hearing has position statements that
include principles, guidelines, and best practices in early intervention.
See http://www.jcih.org/posstatemts.htm.
6. National Association of the Deaf (NAD).
The NAD is a nonprofit organization that advocates for the rights of all
people who are deaf or hard of hearing. The Law and Advocacy Center
educates, advocates, and litigates on behalf of deaf people. See www.
nad.org.
7. National Center for Hearing Assessment and Management.
This center is a national resource center for professionals and families on
the implementation and improvement of Early Hearing Detection and
Intervention systems. See www.infanthearing.org.
8. United Nations Convention on the Rights of Persons with Disabilities

(CRPD).
The website provides information on topics related to disabilities and the
work of the United Nations. See www.un.org/disabilities/.
9. United States Department of Education.
This website provides detailed information on IDEA—The Individuals with
Disabilities Education Act, 2004, Part C and Part B. See http://idea.ed.gov.
10. Visual Language and Visual Learning Center (VL2).
This center studies the effects of visual processes, visual language, and
social experience on the development of cognition, language, read-
ing, and literacy. See http://vl2.gallaudet.edu.

REFERENCES
Alexander Graham Bell Association for the Deaf and Hard of Hearing. (2008).
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American Speech-Language-Hearing Association (ASHA). (2010). Roles and
responsibilities of speech-language pathologists in schools [Professional Issues
Statement]. Retrieved from www.asha.org/policy.
 Raimondo and Yoshinaga-Itano  131

American Speech-Language-Hearing Association (ASHA) and the Council

on Education of the Deaf (CED) Joint Committee. (2006). Fact
sheet:  Natural environments for infants and toddlers who are deaf or hard
of hearing and their families. Retrieved from http://www.asha.org/aud/
Natural-Environments-for-Infants-and-Toddlers/.
Americans with Disabilities Act, 42 U.S.C. § 12101 et seq. (1990).
Arehart, K. H., Yoshinaga-Itano, C., Gabbard, S., Stredler-Brown, A., & Thomson,
V. (1998). State of the states: Status of universal newborn hearing screening,
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Baker, S. (2011, January). Advantages of early visual language (Visual Language
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Bruce, S., & Illinois State Univ., Normal. (1986). The SKI-HI program: A descrip-
tive update, 1986. Washington, DC: ERIC Clearinghouse.
Buysse, V., Wesley, P.  W., Snyder, P., & Winton, P.  J. (2006). Evidence-based
practice:  What does it really mean for the early childhood field? Young
Exceptional Children, 9(4), 2–11.
Conference of Educational Administrators of Schools and Programs for the Deaf
(CEASD). (2005). Position paper: Highly qualified teachers. Retrieved from
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Early Detection, Diagnosis, and Treatment Regarding Hearing Loss in Newborns
and Infants Act, 42 U.S.C. § 280g-1 (2010).
Gallaudet Research Institute. (2008). Regional and national summary report
from the 2007–2008 annual survey of deaf and hard of hearing children and
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National_Summary.pdf.
Georgia Deaf Child’s Bill of Rights, O.C.G.A. 20-2-152.1 (2010). Retrieved
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Special-Education-Services/Pages/Deaf-and-Hard-of-Hearing.aspx.
Goberis, D., Dalpes, M., Abrisch, A, Baca, R., & Yoshinaga-Itano, C. (2012). The
missing link in language development of deaf and hard of hearing chil-
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Hassanzadeh, S. (2012). Outcomes of cochlear implantation in deaf children of
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for infants & toddlers who are deaf or hard of hearing. Retrieved from http://
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Individuals with Disabilities Education Act, 20 U.S.C. §1401 et seq. (2004).
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Jasinska, K. K., & Petitto, L. A. (2013). How age of bilingual exposure can change
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Kovelman I., Baker S.  A., & Petitto, L.  A. (2008). Bilingual and monolingual
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Maine State Legislature: An act to establish the education bill of rights for deaf
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 Raimondo and Yoshinaga-Itano  133

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Stelmachowicz, P. (2012). Longitudinal development of phonology and
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pattan.net/category/Educational%20Initiatives/Deaf%20-%20Hard%20
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and hard-of-hearing students. New York, NY: Oxford University Press.
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whitehouse.gov/the-press-office/president-obama-honors-winners-2
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Uhler, K., Thomson, V., Cyr, N., Gabbard, S., & Yoshinaga-Itano, C. (2014).
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hearing or audiological data from identified children. American Journal of
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Rehabilitative Services. (n.d.). Part C state performance plan (SPP) and an-
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icy/speced/guid/idea/capr/index.html?exp=0.
World Federation of the Deaf. (n.d.). Policy—Education rights for deaf children.
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eaf-children.
Yoshinaga-Itano, C., & Sedey, A. (2000). Early speech development in children
who are deaf or hard of hearing: Interrelationships with language and hear-
ing. The Volta Review, 100(5) (monograph), 181–211.
134  Shaping Early Intervention

Yoshinaga-Itano, C., & Sedey, A. (2013, May). Outcomes of children who are
deaf or hard of hearing. Paper presented at the Connecticut Early Hearing
Detection and Intervention (EHDI) Conference, Hartford, CT.
Yoshinaga-Itano, C., Sedey, A. L., Coulter, D. K., & Mehl, A. L. (1998). The lan-
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NOTES

1. This law is due to expire in 2015. For it to continue beyond that, the U.S. Congress
must reauthorize it.
2. At present, the Department is also considering the implementation of a Results Driven
Accountability framework for Part C.
3. A  leading proponent of the Georgia DCBR was awarded a Citizen’s Medal—the
“nation’s second-highest civilian honor”—by President Obama in 2010 for “demon-
strating the results one citizen can achieve for an entire community.” The award was
presented for her efforts to pass the Georgia Deaf Children’s Bill of Rights (The White
House, 2010).
5  Collaboration with Deaf and Hard-of-Hearing
Communities
Paula Pittman, Beth S. Benedict, Stephanie Olson, and Marilyn Sass-Lehrer

Greg, a speech-language pathologist, is working with an infant who

is deaf and his family who lives in a rural community in the United
States. The Williams have never met another deaf or hard-of-hearing
person and are struggling to understand what the future holds for
their son, Dexter. The most recent audiological evaluation indicated
that Dexter’s hearing is in the severe to profound range. Greg, the pri-
mary early intervention provider to the family, has no contact with
members of deaf or hard-of-hearing communities or any adults who
are deaf or hard of hearing. He believes the family might benefit from
meeting deaf or hard-of-hearing young people or adults, but has no
idea how to make this happen.

GUIDING QUESTIONS

1. How might connecting families with an adult who is deaf or hard of hearing
benefit a young child and family?
2. How might early intervention programs benefit when deaf or hard-of-hearing
professionals and other adults are part of the interdisciplinary team?

135
136  Deaf and Hard-of-Hearing Communities

3. What might an early intervention specialist do to provide meaningful con-

nections for hearing families with deaf or hard-of-hearing adults?
4. How can early intervention programs overcome potential challenges to
meaningful participation of adults who are deaf or hard of hearing in their
programs?

COMPETENCIES ADDRESSED IN THIS CHAPTER

1. Socially, Culturally, and Linguistically Responsive Practices, Including

Deaf/Hard-of-Hearing Cultures and Communities:  Sensitivity to and
Respect for an Individual Family’s Characteristics
2.
Language Acquisition and Communication Development:  Typical
Development, Communication Approaches Available to Children with
Hearing Loss, and Impact of Hearing Loss on Access to Communication
3. Collaboration and Interdisciplinary Models and Practices

INTRODUCTION

The fact that Greg, the speech-language pathologist in the opening vi-
gnette, realized that it would be beneficial to introduce the Williams
to individuals who are deaf or hard of hearing was quite insightful.
Despite not knowing any deaf or hard-of-hearing adults himself, he
was interested in investigating how to make collaboration possible. As
a novice in this area, Greg knew that he needed to learn more about
people who are deaf or hard of hearing and understand who or what
the Deaf Community is. Greg also needed information about the role
of adults who are deaf or hard of hearing in early intervention, and the
potential value of connecting young deaf or hard-of-hearing children
and their families with them.
This chapter explores Greg’s journey as he, in collaboration with the
other members of his professional team, examine the research, best prac-
tices, and the experiences of hearing families who have had meaning-
ful relationships with members of deaf or hard-of-hearing communities.
 Pittman et al.  137

Greg and Frances, a social worker on his team, discover ways to meet deaf
and hard-of-hearing adults, and learn about early intervention programs
that include deaf and hard-of-hearing adults as mentors, role models, or
advisors. Greg’s hope is that the information he gathers can be a catalyst
for change and formalize the inclusion of adults who are deaf or hard
of hearing in his state’s early hearing detection and intervention (EHDI)
program.

ROLE OF DEAF AND HARD-OF-HEARING ADULTS IN EARLY

INTERVENTION

Early intervention specialists have backgrounds in a variety of academic

disciplines in which people who are deaf or hard of hearing are greatly
underrepresented. As a result, many specialists, such as Greg, lack experi-
ences working side by side with colleagues who are deaf or hard of hearing
and have limited understanding of what it means to be deaf (Benedict &
Sass-Lehrer, 2007). The absence of people who are deaf or hard of hearing
means that professionals who are hearing shape policies, positions, and
services in early intervention programs. Hearing professionals often view
being deaf or hard of hearing as a problem that needs to be fixed, pri-
marily through medical interventions or therapies, whereas many adults
who are deaf or hard of hearing have a different perspective. Being deaf
is different from being hearing, but it is far from disabling (Padden &
Humphries, 2006).
Early intervention programs have involved adults who are deaf or hard
of hearing in informal ways for many years. Deaf and hard-of-hearing
adults were, and still are, invited to participate on parent panels or share
stories with young children using American Sign Language (ASL). Many
programs enlist the help of adults who are deaf to teach hearing families
how to communicate with their babies using a signed language and other
visual strategies. Too often, early intervention programs have relied upon
the good will of adults who are deaf or hard of hearing to voluntarily
participate in these activities rather than hire them as members of the
early intervention professional team. Informal opportunities for interac-
tions with hearing families are helpful but provide only a glimpse into the
138  Deaf and Hard-of-Hearing Communities

lives of a small number of people who are deaf or hard of hearing, and
rarely support ongoing relationships with families (Bodner-Johnson &
Benedict, 2012).
The limited role of deaf or hard-of-hearing adults in early interven-
tion began to change in the early 1990s when bilingual–bicultural edu-
cation programs in the United States emerged and promoted the use of
ASL with infants and ASL as the primary language of instruction in the
classroom (Johnson, Liddell, & Erting, 1989). Bilingual–bicultural educa-
tion, which today is known as American Sign Language (ASL)/English
bilingual education, focuses on both ASL and English (in the spoken
and written forms) and encourages programs to acquaint families with
Deaf Culture and the Deaf Community. (See Chapter 8, Collaboration for
Communication, Language, and Cognitive Development.) Early bilingual
programs actively recruited deaf or hard-of-hearing professionals, espe-
cially those who were native or near native ASL users, as early interven-
tion specialists and instituted more formal ways to involve people who
are deaf or hard of hearing as mentors, role models, and ASL instruc-
tors. Prior to this time, the involvement of adults who were deaf or hard
of hearing was limited, and it was unusual to find an early intervention
professional who was deaf or hard of hearing. More adults who are deaf
or hard of hearing are working in early intervention programs today than
ever before, although their involvement is still limited in many programs
in the United States and throughout the world.

MANY WAYS TO BE DEAF OR HARD OF HEARING

People who are deaf comprise an extremely heterogeneous community.

Deaf and hard-of hearing people exist in every culture and every land
around the globe. Although being deaf is considered “low incidence,”
people whose hearing is outside the audiological range of “normal”
are plentiful. Deaf and hard-of-hearing babies are identified in roughly
one to six births out of 1,000 (Cunningham & Cox, 2003), with lower
rates in resource-rich countries and higher rates in developing countries
(Olusanya, 2012). The number of children with limited hearing increases
 Pittman et al.  139

throughout the early childhood years. Many babies who were born with
hearing in one or both ears (i.e., unilateral or bilateral) experience a grad-
ual loss of hearing throughout their childhood years (Hoffman, Houston,
Munoz, & Bradham, 2011).
Use of assistive listening technologies can influence access to hearing
and communication modalities, which in turn affects a child’s educa-
tional placement and their circle of friendships (Leigh, 2009; Wilkens &
Hehir, 2008). People who do not use listening technologies or find them
of limited use may use a visual language as their primary language of
interaction, such as a native signed language, and may attend a school or
educational program exclusively for deaf children. Their educational and
social experiences are typically different from those who attend public
schools designed primarily for hearing students.
Abilities, talents, and other differences also influence deaf peo-
ple’s pathways and choices. People, whether hearing, deaf, or hard of
hearing, are influenced by many factors including their birth circum-
stances, their physical and emotional well-being, family and commu-
nity support, socioeconomic factors, ethnicity, and education. Deaf or
hard-of-hearing people are professionals and physical laborers. They
may be doctors, lawyers, teachers, athletes, civil servants, or construc-
tion workers. Some are employed, some are underemployed, and some
are looking for work. Deaf or hard-of-hearing people, like hearing
people, reflect the range of human experience (Benedict et al., 2014).
In short, there are many ways to be deaf and many factors that shape
who deaf and hard-of-hearing people are and with whom they identify
(Leigh, 2009).

Deaf and Hard-of-Hearing Communities

A person is considered a member of the Deaf Community if he or she
“. . . identifies him or herself as a member of the Deaf Community, and
other members accept that person as a part of the community” (Baker
& Padden, 1978, p. 4). The Deaf Community is recognized as a sociocul-
tural group of people whose identity is connected with being deaf and
140  Deaf and Hard-of-Hearing Communities

who value sign language for communication and interactions (Padden &
Humphries, 2006).
There are many avenues for gaining access into the Deaf Community.
Some children are born into families with deaf parents, raised using a
signed language, and surrounded by others who share similar values
and beliefs. More than 90% of children who are deaf or hard of hearing
are born into hearing families (Mitchell & Karchmer, 2004). These chil-
dren may learn a signed language and what it means to be deaf from
interactions with other deaf or hard-of-hearing people, usually at school.
Whereas most hearing children learn about their culture and community
from their families, children who are deaf are more likely to learn about
the Deaf Community from other individuals who are deaf. Identity and
affiliations may change throughout a person’s life. For example, someone
not identified with the Deaf Community as a youth might connect with
the Deaf Community later in life.
People who are deaf or hard of hearing, like those who are hearing,
choose to identify with different social and cultural communities, and
not all choose to identify with the Deaf Community. For example, peo-
ple who are deaf or hard of hearing and communicate primarily through
spoken language may choose to associate with others who use spoken
language. They may use and understand sign language and choose in-
stead to identify with the hearing community or others who use spoken
language. Conversely, those who use a native signed language may prefer
to associate with others who use a similar visual language and identify
strongly with the Deaf Community. Many individuals who are deaf or
hard of hearing identify with both the hearing and the Deaf Community
because they have been raised in a bilingual environment and feel they
have a place in both communities. The Deaf Community recognizes di-
versity in many areas including, but not limited to, language use, experi-
ences, culture, religion, and sexual orientation.

Big “D” and Little “d”

When Greg started reading about the diversity among people who are
deaf or hard of hearing, he discovered that some writers use “Deaf ”
 Pittman et al.  141

written in upper case letters to refer to those who consider themselves

to be culturally Deaf and members of the Deaf Community. The term
“deaf ” written in lower case letters was used to distinguish those people
who are deaf or hard of hearing, audiologically, but who do not iden-
tify with the Deaf Community. While considering this distinction, Greg
made a note to himself to investigate to what extent people who are deaf
or hard of hearing use this “Deaf ” versus “deaf ” distinction and how or
if this applies to infants or toddlers who have yet to discover their own
identities.
Greg realized that the only way to answer these questions was to meet
individuals who are deaf or hard of hearing and learn more about their
lives. He contacted an agency in a city more than an hour away that serves
and is run by individuals who are deaf or hard of hearing and requested
an opportunity to meet with several people there. Greg listened to their
stories and learned that some people do in fact identify themselves as cul-
turally Deaf and would say they were “big D Deaf.” Greg learned that the
concept of cultural identity is somewhat fluid. Although some individu-
als fully identified with the Deaf Community and Deaf Culture, there
were many who saw themselves as a part of both the hearing and the
Deaf Community. It struck Greg that deaf or hard-of-hearing people,
similar to hearing people, identify with different groups or subcultures
that reflect their life experiences, attributes, and interests and that iden-
tity and involvement with different communities change over time. This
information was helpful as Greg thought about how little Dexter’s future
life experiences will determine with whom he chooses to associate and to
what extent he identifies with other people who are also deaf or hard of
hearing.

DEAF CULTURE

Soon after the audiologist confirmed that Dexter was deaf, the Williams
began their own search for information and found some websites on Deaf
Culture. Most families, like the Williams, have never met another person
who is deaf or hard of hearing, and have no idea that there is actually
142  Deaf and Hard-of-Hearing Communities

such a thing as Deaf Culture. The William’s family shared some concerns
with Greg about Dexter’s identity, not only because Dexter is deaf, but
also because he is African American. The Williams were concerned that
if he chose to become a part of the Deaf Community and embrace Deaf
Culture, that might mean that he would lose his African-American iden-
tity and cultural heritage.
Greg decided to contact the National Association of the Deaf (NAD)
who referred him to the National Black Deaf Advocates. Their staffs
were very helpful and gave him a list of reputable websites and books
on Deaf Culture. (See Recommended Resources at the end of this chap-
ter.) Greg realized that it would be helpful to connect the Williams with
the National Black Deaf Advocates to learn more about how others
who are African-American and deaf or hard of hearing preserve and
cherish their cultural heritage and traditions. Based on his own read-
ings and his recent interactions with deaf and hard-of-hearing adults,
Greg could confidently share with the family that being affiliated with
the Deaf Community does not exclude or homogenize other identi-
ties. He explained that the Deaf Community honors diversity, and that
Dexter will be able to embrace his African-American heritage regard-
less of whether he chooses at some point in his life to identify with the
Deaf Community.
Describing any culture is complex. Padden and Humphries (1988)
define culture as a set of learned behaviors of a group of people who have
their own language, values, rules of behavior, and traditions. Individuals
who are deaf are the only “disability” group that has its own language. In
the United States, that language is ASL. It is that language that provides
a direct link to the Deaf Community and to Deaf Culture. American
Sign Language, like other native signed languages, is a full and complex
language, regulated by syntactical rules and grammar similar to other
formal spoken languages (Stokoe, 2005). There is no universal sign lan-
guage; native signed languages are distinct and reflect their respective
countries and cultures. What makes signed languages unique is that they
are visual languages with no written or spoken mode (Paul, 1996; Stokoe,
1996). ASL has traditionally been passed from generation to generation
through residential schools for children who are deaf (Gannon, 1981). At
 Pittman et al.  143

the center of Deaf Culture is the value of knowing and using fluently the
native signed language of the country where the individual lives.
In the Deaf Community, being deaf is a source of pride and identifying
with a group of like individuals is at the heart of the culture. Social inter-
action is an integral part of the Deaf Community. Although Deaf clubs
were very popular years ago as a way to stay connected, social media,
text messaging, and videophones have reduced their popularity (Power,
Power, & Horstmanshof, 2006; Shoham & Heber, 2012). Opportunities
to gather with other members of the Deaf Community remain a high
priority for many people who are deaf (Atherton, 2009; Hadjikakou &
Nekolaraizi, 2011; Lane, Hoffmeister, & Bahan, 1996).

RATIONALE FOR COLLABORATION WITH DEAF AND

HARD-OF-HEARING COMMUNITIES

Greg, along with Frances and the early intervention program director,
agreed that they needed information about the value of connecting adults
who are deaf or hard of hearing with families and their young children.
An internet search of best practices in early intervention for deaf or
hard-of-hearing infants and toddlers led him to two evidence-based doc-
uments that endorse the involvement of deaf and hard-of-hearing adults
in early intervention.

Supplement to the JCIH 2007 Position Statement

The first document Greg reviewed was the Supplement to the Year 2007
Position Statement:  Principles and Guidelines for Early Intervention After
Confirmation That a Child Is Deaf or Hard of Hearing [Joint Committee on
Infant Hearing (JCIH), 2013]. This document provides guidelines to EHDI
programs to support effective provision of services to infants and toddlers
who are deaf or hard of hearing and their families in the United States. The
supplement includes three goals that specifically address this issue:
Goal 3a acknowledges the challenge for families of having access to
adults who can teach ASL. The goal reinforces the importance of having
early intervention providers who are fluent, native signers.
144  Deaf and Hard-of-Hearing Communities

Goal 10 states: “Individuals who are D/HH [deaf or hard of hear-

ing] will be active participants in the development and implementation
of EHDI systems at the national, state/territory, and local levels; their
participation will be an expected and integral component of the EHDI
systems” (e1337). The document explains that “the goal is to have indi-
viduals who are D/HH woven into the fabric of EHDI systems at every
level. Individuals who are D/HH know what works to meet their lan-
guage and communication needs in a way that people who are hearing
cannot. Because the support of language and communication of infants
is intended to be the cornerstone of the EHDI systems, it is critical to
include D/HH adults in these systems” (JCIH, 2013, e1337).
Goal 11 of this same document calls for “all children who are D/HH
and their families [to] have access to support, mentorship and guidance
from individuals who are D/HH” (e1338). The rationale for this goal
points to research that affirms the benefits to children who are deaf or
hard of hearing and their families when they interact with professionals
and community members who are deaf or hard of hearing.
The JCIH Supplement to the 2007 Position Statement (JCIH, 2013) rec-
ommendations went beyond Greg’s expectations by stating that adults
who are deaf or hard of hearing should be fully included in all aspects of
early intervention programming, not only as role models and mentors,
but also as directors of EHDI programs, chairs of EHDI advisory com-
mittees, and other leadership positions. The JCIH guidelines emphasized
the importance of providing families with access to deaf and hard-of-
hearing adults who have a variety of life perspectives and experiences and
called for more professional development and mentoring opportunities
to provide deaf and hard-of-hearing adults with the knowledge and skills
they need for different roles and positions in early intervention.

Best Practices in Family-Centered Early Intervention

The second document Greg found describes the consensus of a panel
of international experts on the essential principles for family-centered
early intervention (Moeller, Carr, Seaver, Stredler-Brown, & Holzinger,
2013). Greg was surprised when he discovered that including adults who
 Pittman et al.  145

are deaf or hard of hearing is not only valued in the United States, but in
many other countries around the world. In this document, Principles 4,
7, and 8 mention the vital role of adults who are deaf or hard of hearing.
Principle 4 addresses the importance of role models who are deaf or
hard of hearing related to family social and emotional support. Principle
7 concerns qualified providers and notes that competent and fluent sign
language models should be available to families that are learning to sign.
Collaborative Teamwork is the focus of Principle 8 and states that ser-
vice providers and programs should “Offer families opportunities for
meaningful interactions with adults who are D/HH” (p. 144). They also
state that “D/HH adults can serve as role models, consultants, and/or
mentors to families, offering information and resources and demon-
strate enriching language experiences” (p. 144). They recommend that
providers and programs should “involve D/HH community members
on the team in culturally and linguistically sensitive ways” (p. 441).
These documents provide Greg and his colleagues with substantial
evidence and rationales to support including deaf and hard-of-hearing
adults in their EHDI program. The fact that the documents have wide-
spread support from a range of national and international professional
groups and experts will strengthen the administrative efforts to improve
the services in his state.

Benefits of Deaf and Hard-of-Hearing Adult Involvement in Early

Intervention
Next, Greg and Frances decided to take a closer look at the research on the
benefits to children and families when deaf and hard-of-hearing adults
are included in early intervention programming. They decided to con-
tact early intervention experts who were cited in the JCIH Supplement
(2013) and Best Practices document (Moeller et al., 2013) to obtain more
information about the benefits for children and their families.

Benefits to Young Children

Adults who are deaf or hard of hearing frequently share stories about
how, as children, they believed they were the only deaf or hard-of-hearing
146  Deaf and Hard-of-Hearing Communities

person in the world. It is not unusual for a young child who is deaf or
hard of hearing and attends a school with only hearing children to grow
up with a sense of aloneness (Oliva & Lytle, 2014). Many people do not
discover others who are like them until they reach high school or college.
One man shared the following story:

I grew up in a very small rural town to a hearing family. In fact, the

whole town was hearing. I never met another person who was deaf
or hard of hearing, or if I did, I had no idea that they were deaf.
I knew I was different from everyone else. I knew I couldn’t hear
like they did, even with my hearing aids. No one else I knew wore
hearing aids. No one else struggled to understand what was being
said. For me, every day was a challenge, but I never let my lack of
hearing equal a lack of love for my life, nor has it ever prevented
me from doing exactly what I wanted to do. (D. Harman, personal
communication, September, 1983)

Many individuals begin to develop an identity as a deaf person only after

meeting other deaf people. For this man, it was after meeting other deaf
people that he acknowledged:

. . . this was the birth of my identity as a deaf man. That was the day
that I began to realize that I was normal—a normal deaf person. And
that was the day that I began to really understand the world around
me. (D. Harman, personal communication, September, 1983)

Toddlers and preschoolers often “light up” when they see adults signing
or when they see another person who has hearing aids or cochlear implants.
When young children who are deaf or hard of hearing have opportunities to
interact with deaf or hard-of-hearing adults and other children, they under-
stand from an early age that the world is filled with many different kinds of
people; some are hearing, some are deaf, and some are hard of hearing.

Communication and Language

For hearing families, deaf mentors, role models, or advisors can help
them navigate their way through the experience of having a deaf or
hard-of-hearing child. They can help put families’ minds at ease as they
 Pittman et al.  147

learn about communication and language, technology and educational

opportunities, and the actual life experiences of people who are deaf or
hard of hearing.

The SKI-HI Deaf Mentor Program

In 1991, a model program was developed by the SKI-HI Institute at Utah
State University called the Deaf Mentor Program (SKI-HI Institute,
n.d.). The program included research to determine whether there was an
impact on hearing families and their children when trained Deaf adults
visited their homes weekly to help them learn how to communicate
with their children. These professionals also exposed them to the Deaf
Community and shared their life stories and experiences. At the comple-
tion of the study, there were significant improvements in the language
skills of both the children and family. Mothers who were involved in the
program reported using more than six times more signs with their child
than families in a control group who did not have access to Deaf Mentors,
and fathers reported using more than seven times more signs than fathers
in the control group. In addition, parents in the experimental group
reported that their child understood what they were communicating to
them 84% of the time compared to 50% of the time as reported by families
who did not have Deaf Mentors (Watkins, Pittman, & Walden, 1998).
As communication in the family improves, the quality of life for the
entire family improves as well. There is a direct and positive correlation
between linguistic responsiveness of the parent, the quality of interaction,
and the level and speed of language development in the child (Nelson,
Carskaddon, & Bonvillian, 1973; Newport, Gleitman, & Gleitman, 1977).
Families who participated in the Deaf Mentor Program reported that
when their language skills in ASL and signed Englisha improved, their
child’s behavior also improved. One parent commented:

Our daughter would throw herself on the floor kicking and scream-
ing several times a day. I will never forget when this happened for

a
Signed English is an invented sign system that makes spoken English visually accessible.
Other spoken languages (e.g., Spanish, Urdu) also have sign systems that, similar to signed
English, are typically used simultaneously with the spoken language.
148  Deaf and Hard-of-Hearing Communities

the first time when our Deaf Mentor was in our home. We were
beside ourselves and asked our Deaf Mentor what we could do to
stop these tantrums. She simply said, “You just need to help her
understand what is happening.” She went over to our daughter,
began signing to her and pointing, and she figured out what our
little girl wanted and in minutes, she was all smiles. As we learned
more signs and could communicate more effectively with our
daughter, her negative behaviors disappeared and she began ask-
ing for what she wanted instead of throwing herself on the ground.
(N. Dexter, personal communication, July 14, 1995)

The Colorado Deaf and Hard-of-Hearing Role Model Program

The communication and language benefits of having deaf or hard-of-
hearing adults involved in early intervention programming were also
evidenced in Colorado (Beams & Olson, 2007). The Deaf and Hard of
Hearing Role Model Program was established by the Colorado Home
Intervention Program in 1995. This program provides families with
opportunities to get to know deaf and hard-of-hearing adults who use a
range of communication modalities and language(s), both ASL and spo-
ken language. Adults who are trained to work as Role Models have differ-
ent hearing levels and some use assistive listening technologies whereas
others do not. Families that use sign language with their children can also
receive sign language instruction and storytelling techniques from hear-
ing and deaf ASL instructors . The SKI-HI Deaf Mentor Program and the
Deaf and Hard of Hearing Role Model Program help families develop
targeted skills to improve communication with their child.
Hearing families are often not aware of the adaptations they need to
make to ensure that their child has direct access to communication. This
became apparent to one parent who stated the following:

Our Deaf Role Model was also our early interventionist. It was in
our weekly meetings that took place in our home that I learned how
to naturally do everyday things in a new and better way that would
give my son access to language. I met our early interventionist at
 Pittman et al.  149

the door and was chatting with her as we walked up the stairs. She
was walking behind me holding my son’s hand. When we got to
the top of the stairs she told me that she could hear me talking but
had no idea what I was saying. I looked at her, and then I looked
at my son who was still holding her hand, and I realized that he
had never heard me talking if he couldn’t see my face. From then
on when we walked up the stairs together I either turned my head
back as I walking or we all walked together so we could see each
other. (K. Bohan, personal communication, July 12, 2000)

Some parents stop talking or singing to their baby after they discover
that they are deaf or hard of hearing. After meeting deaf or hard-of-
hearing adults, they realize there can still be a place for sounds in their
child’s life. Deaf or hard-of-hearing adults experience the world in a mul-
titude of ways; some experience it with and some without sound. Deaf
or hard-of-hearing adults help families understand that a successful and
fulfilling life does not depend upon the ability to hear. One parent said:

We learned that we didn’t have to stop singing and playing! Our

mentor shared how some deaf and hard of hearing people can and
do enjoy music if it is something they are interested in. Just like
hearing people, some people care a lot about music and others
may not. (C. Bacher, personal communication, October, 2001)

Adults who are deaf or hard of hearing understand the language and
communication needs of children who are deaf or hard of hearing and
are in a unique position to support and facilitate early language devel-
opment. Deaf or hard-of-hearing adults can interact with infants and
toddlers in ways that make language both accessible and meaningful.
Perhaps even more importantly, deaf or hard-of-hearing adults can teach
families skills and strategies to help them make the most of every oppor-
tunity to promote their child’s language development.

Benefits to Hearing Families

Hearing families who learn that they have a child who is deaf or hard of
hearing often feel confused about what this will mean for their child and
150  Deaf and Hard-of-Hearing Communities

family. Families report a strong desire to have deaf or hard-of-hearing

adults actively involved in their lives (Hintermair, 2000; Jackson, 2011).
Those who have frequent contact with adults who are deaf or hard of
hearing have greater confidence in raising their child who is deaf, feel less
isolated, and have improved interactions with their child (Hintermair,
2000; Pittman, 2003).

Understanding Their Child’s Potential

Individuals who are deaf or hard of hearing have much to offer chil-
dren and their hearing families. Getting to know deaf or hard-of-hearing
adults can help parents better understand their child’s potential. One
parent, who was involved in the Deaf Mentor Program in Utah, stated:

I think that meeting and getting to know our Deaf Mentor made
me feel less scared of her [our daughter’s] future. Our Deaf Mentor
has more of a college education than I have. You know she finished
four years of college. I only finished two years of university. She’s
more skilled, more educated than I am. Meeting her and seeing
all of her accomplishments helped me realize that my child could
be more and do more than I  ever dreamed. Here was this Deaf
person who had surpassed me in school and was completely suc-
cessful. Of course that changed how I felt about my child’s future.
(Pittman, 2003, p. 155)

Families can learn a great deal from hearing professionals, but they
can learn what it is like to be a person who is deaf or hard of hearing only
from individuals who are deaf or hard of hearing themselves. Families
with little or no experience with people who are deaf or hard of hearing
and learn that their baby is deaf or hard of hearing are often overwhelmed.
They may experience many different emotions and without support have
difficulty creating a secure, trusting, and nurturing relationship with
their newborn (Pipp-Siegel, Sedey, & Yoshinaga-Itano, 2002). Meeting
deaf or hard-of-hearing adults can help replace a family’s concerns with
hope and optimism as they focus on their child’s strengths and abilities
rather than the absence of hearing.
 Pittman et al.  151

One family in Colorado shared these thoughts with a deaf professional

on the early intervention team:

When we first received our son’s diagnosis, I looked at the doc-

tor, he was hearing. I looked at the audiologist, she was hearing
and as we walked out of the office, I  looked back at the recep-
tionist and she was hearing. I had no idea what this [raising a deaf
child] would be like until you (deaf adult) walked in the door. (S.
Strickfaden, personal communication, April, 2008)

Families that meet deaf or hard-of-hearing people during their child’s

early years realize what is possible for their own child. Families that have
had the benefit of getting to know adults who are deaf rate their anxiety
about raising a child who is deaf or hard of hearing lower than families
who have never met an adult who is deaf or hard of hearing (Hintermair,
2006; Pittman, 2003; Watkins, Pittman, & Walden, 1998).

Benefits Extend to Other Family Members

The benefits of having deaf adults involved in the lives of young children
and their families extend beyond parents and other primary caregivers.
Grandparents and extended family members provide substantial support
to families that have children who are deaf or hard of hearing (Jackson,
2011; Luckner & Velaski, 2004; Luterman, 1987; Meadow-Orlans,
Mertens, & Sass-Lehrer, 2003; Morton, 2000). One parent explained:

Our mentor helped us communicate and get our children com-

municating with her [our deaf daughter], and also to get our par-
ents, our daughter’s grandparents, into signing. . . . I think it was
nice for the grandparents to see her [the Deaf Mentor], having
never known a deaf person, and to see what she was like and to feel
more comfortable with that. (Pittman, 2003, p. 145)

Technology
The selection and use of listening technologies can be difficult for fami-
lies. Whereas hearing professionals provide information to families, it is
152  Deaf and Hard-of-Hearing Communities

only deaf or hard-of-hearing adults who can tell families how people who
are deaf or hard of hearing actually use these technologies in everyday
situations. Hearing families often pursue the use of auditory technol-
ogy such as hearing aids, FM units, and cochlear implants to improve
their children’s ability to access spoken language. (See Chapter 6, Getting
Started: Hearing Screening, Evaluation, and Next Steps.) However, fami-
lies may not understand that even with the best technologies, hearing
spoken language in noisy environments can be challenging. Individuals
who are deaf or hard of hearing can help families better understand the
benefits and challenges of technologies and suggest helpful strategies.
Although listening technologies are discussed with families soon after
their infant’s hearing evaluation has confirmed that he or she is deaf or
hard of hearing, visual technologies are typically not mentioned. Visual
technologies include videophones, texting, alarm clocks with vibration
or flashing lights, captions, and flashing light alert systems. These tech-
nologies are not only part of the everyday lives of adults who are deaf or
hard of hearing, but play an important role in the early years of children
as they learn about the presence, source, and meaning of sounds in their
environment.

Support for Families’ Culture and Traditions

The Williams, similar to most families, want to share their values, tradi-
tions, and beliefs with their son. Understanding family traditions is a vital
part of family life and helps children experience a sense of belonging.
Greg believes that the Williams would benefit from the experiences of
an African-American deaf or hard-of-hearing adult who could help the
Williams explain their family traditions. Greg heard a story about one
hard-of-hearing adult who worked with a Catholic family who observed
Lent. The family decided not to eat meat on Fridays during Lent. Their
daughter did not realize that when Lent was over, she would be able to
eat meat again on Fridays. The hard-of-hearing adult working with the
family realized this misunderstanding and discovered that her parents
simply forgot to explain that the decision to eliminate meat from their
diets on Fridays was only during Lent. Deaf and hard-of-hearing adults
as mentors, role models, or advisors can provide families with ideas and
 Pittman et al.  153

strategies for how families can share their family traditions and help their
children feel more connected to their families.

Benefits for Early Intervention Systems, Programs, and

Professionals
There are many advantages to having deaf and hard-of-hearing profes-
sionals and other adults meaningfully involved in all aspects of EHDI
programs. Greg learned, to his surprise, that there are deaf professionals
who are audiologists, superintendents of schools for deaf children, coun-
selors, educators, psychologists, and social workers. These professionals
have the ability to make changes in systems that might not have been real-
ized without their input. For example, when newborn hearing screening
programs began, families whose newborns did not pass were often told
that their babies had “failed” the newborn hearing screening. The mes-
sage relayed to families was laced with “doom and gloom.” Professionals
told families that they were very sorry that their baby had a “hearing
loss” and families reported that some professionals would tell them that
their child would never be able to talk, or read, or go to college. The influ-
ence of professionals and other adults who are deaf or hard of hearing,
along with families and others who understand the experiences of deaf
people, has helped to change the tone and content of these early messages
families received. Today, families are “referred” for further evaluation
when their newborn does not receive “a pass” on the hearing screening.
Families are more often being told that their newborn has a bright future
ahead and that families should have high expectations. Many families are
meeting deaf and hard-of-hearing adults soon after they learn that their
baby is deaf or hard of hearing and are learning first hand what people
who are deaf can do.

TYPES OF INVOLVEMENT

Deaf or hard-of-hearing adults working in early intervention programs

include professionals with expertise in a variety of areas (e.g., ASL in-
struction, audiology, speech-language pathology, counseling, education,
154  Deaf and Hard-of-Hearing Communities

psychology, social work). Many of these professionals are also parents

themselves with deaf or hard-of-hearing children. They may have grown
up in families in which they were the only deaf person, or have grown up
in families with deaf parents and deaf siblings. They can and do assume
the same roles and responsibilities as professionals who are hearing.
Appropriate training and support are critical to effectiveness regardless
of whether the individual is deaf, hard of hearing, or hearing.

Deaf Mentor and Role Model Programs

Through their research, Greg and Frances discovered that several states
in the United States have adapted elements of the SKI-HI Deaf Mentor
Program at Utah State University and the Deaf and Hard of Hearing Role
Model Program from Colorado to fit the needs of families and children
in their programs. For example, New Mexico has established a statewide
Deaf Mentor Program. See Gallegos and Abrams (2011) for a description
of their program.
Both of these programs (e.g., Deaf Mentor Program and Deaf and
Hard of Hearing Role Model Program) have different strengths, and both
place a high value on ensuring that families have opportunities to meet
deaf or hard-of-hearing adults.

PROGRAMS PROMOTING MEANINGFUL COLLABORATIONS

Based on what they had learned so far, Greg and his colleagues developed
a list of factors that appear to promote effective and meaningful collab-
oration with deaf or hard-of-hearing adults and their communities (see
Table 5.1).

Components of the SKI-HI Deaf Mentor Program

The early intervention administrative team needs significant guidance to
ensure that the program they implement is not only effective but also
sustainable. Greg was able to share with them the five foundational com-
ponents of the SKI-HI Deaf Mentor Program (DMP) to use as a model.
Many of these components are also incorporated in the Colorado Deaf/
 Pittman et al.  155

Table 5.1  Factors Promoting Meaningful Collaborations with Deaf and

Hard-of-Hearing Adults and Their Communities

1. Deaf or hard-of-hearing professionals are involved in every component

of the early hearing detection and intervention process from screening
through provision of services.
2. Professionals provide opportunities for families to meet deaf or
hard-of-hearing people with a variety of backgrounds and characteristics:
• Different levels of hearing
• Different language and communication preferences and abilities
• Deaf or hard of hearing from birth and those who have become deaf or
hard of hearing later in life
• Use of assistive listening technologies (e.g., hearing aids, cochlear
implants) and those who use visual and tactile technologies
• Identify with the Deaf community and those who do not
• Well educated and hold professional positions and those who do not
• Are culturally, linguistically, and ethnically diverse
• Have none, one or more developmental delay or difference
3. Programs provide families with opportunities to establish ongoing and
meaningful relationships.
4. Programs provide opportunities for deaf or hard-of-hearing professionals
to be equal and respected members of the interdisciplinary team.
5. Programs provide training, mentoring, and support for deaf or
hard-of-hearing professionals to acquire the knowledge and skills they
need to work with infants, toddlers, and their families.

Hard of Hearing Role Model Program. These include (1) training; (2)
direct service; (3) supervision and collegial support; (4) administration
and support; and (5) involvement of the local Deaf Community.

Training
Deaf mentor programs must provide effective training opportunities ini-
tially and as an organized and ongoing process. Working in a home set-
ting with families requires specialized skills to provide effective services.
Initial training includes best practices in early intervention including
156  Deaf and Hard-of-Hearing Communities

how to work with families and early childhood development. Mentors

who are native or near native-signers who work with families who use
ASL with their children also learn how to teach ASL to families and how
to involve families in the Deaf Community.

Direct Service
At the heart of the DMP are weekly visits with families that take place in
the family’s home or other natural environments for the child and fam-
ily. For families learning ASL, the visits have three components: teach-
ing the family ASL, interaction with the child using ASL, and sharing
information regarding Deaf Culture and the Deaf Community. Families
are taught ASL through formal ASL lessons that fit the needs of the fam-
ily and informally through conversational interactions. Interactions with
the child always include the family and new ASL skills that the family is
learning are embedded into the family and child’s daily routines through
modeling on the part of the Deaf Mentor and active involvement from
the family. The Deaf Mentor acts as a “guide” to the family as they explore
and learn more about the Deaf Community and meet individuals within
the community. Families have reported that seeing their Deaf Mentor
in everyday situations has brought them immediate comfort as well as a
glimpse into their child’s future. One mother reported:

We would occasionally go to get ice cream or go to the grocery

store, and I just learned so much from our Deaf Mentor, seeing
how she used gestures, spoken language, sign language and print
to communicate with everyone around her. It was just so easy for
her that all of my concerns for my daughter just melted away. It
really helped me to understand that my daughter needs all kinds
of communication and language skills, but most importantly, she
needed confidence to communicate in any situation. That was a
powerful realization for me. (A. Pack, personal communication,
April, 2002)
Families who communicate with their children through spoken lan-
guage receive visits from a Deaf Mentor who also uses spoken language.
 Pittman et al.  157

During these visits families learn how to communicate more clearly with
their child and obtain ideas to make communication in everyday situa-
tions easier for the child and family. The Mentor remains available to the
family to answer questions or respond to concerns they might have.
Visits with Deaf Mentors and families should be enjoyable. Learning a
new language, learning about a new culture and about a new community,
or discovering adaptations that individuals who are deaf or hard of hearing
make to participate fully in a world of sound can be challenging, but when
visits with the Deaf Mentor are fun, families tend to be more engaged.

Supervision and Collegial Support

Supervision and support from colleagues are essential for any early
intervention service to be effective. Supervision provides an opportunity
for Deaf Mentors to obtain feedback about their work with families and
young children and to learn new strategies. Deaf Mentor Program super-
visors should be individuals who have been highly effective Deaf Mentors
or Deaf Role Models themselves. Effective supervision requires training,
and all supervisors should have the opportunity to develop the knowl-
edge and skills needed to provide effective supervision.

Administration and Support

Deaf Mentor Programs require support from program administra-
tors who appreciate the value of the program and believe it is essential.
Regardless of the communication approach that is used by a family, the
benefit of having deaf or hard-of-hearing adults involved as an integral
member of the early intervention team is vital. Administrators can sus-
tain these programs by providing sufficient resources to hire effective
staff, providing appropriate compensation, and ensuring quality training,
supervision, and support.

Deaf Community Involvement

Deaf Mentor Programs require strong and positive relationships with
their local deaf and hard-of-hearing communities. Collaboration
158  Deaf and Hard-of-Hearing Communities

encourages a sense of shared ownership and responsibility for the qual-

ity of the program. Success will depend in large part on the ability to
recruit outstanding deaf and hard-of-hearing mentors and provide Deaf
Community events for families. The Deaf Mentor Program can be a
model for how deaf, hard-of-hearing, and hearing people work together.
As families learn about deaf and hard-of-hearing communities, they
are likely to develop a sense of comfort knowing that the community
of deaf and hard-of-hearing adults will lend its support and encourage-
ment. As these individuals develop positive relationships with fami-
lies and the early intervention program specialists, they recognize that
regardless of the paths families choose for communication and educa-
tion, or the technologies they select for their children, a positive rela-
tionship with individuals who are deaf or hard of hearing is essential.
One parent, when reflecting on her experiences with the Deaf commu-
nity, had this to share:

We have a very high regard for the Deaf community, and because
we’ve chosen to put our kids in mainstream educational programs,
we know they need to socialize with Deaf people. We feel that the
Deaf community can teach our children things that are important
to them because they are Deaf and we are not. We know that they
need other people who are like them to share those feelings and
experiences that only Deaf people can share, and we want to be a
part of that too. (Pittman, 2003, p. 164)

CHALLENGES TO COLLABORATION

Greg and Frances are very enthusiastic about setting up a Deaf Mentor
Program in their area, but they are not naive concerning the challenges
that lie ahead. They wonder: Where will we find qualified individuals
who are willing to be trained as Deaf Mentors? Who will provide train-
ing for the Deaf Mentors? How will we be able to provide the Williams
with a deaf or hard-of-hearing mentor or role model? These issues are
challenging, especially for families such as the Williams who live in
 Pittman et al.  159

rural areas where it is difficult to find people who are deaf or hard of
hearing.

Finding and Training Mentors, Role Models, and Guides

Deaf or hard-of-hearing individuals who are interested in becoming
mentors or role models must have the dispositions needed to work with
families and very young children and be willing to acquire new knowl-
edge and skills. They must be open-minded and flexible and they must
be willing to put aside their personal beliefs and biases to understand
and respect the family’s perspective and the decisions they make for their
child. Families have beliefs and values that reflect their experiences, their
cultures, and their traditions, and Deaf Mentors or Deaf/HH role models
must be willing to learn how to work with families whose values and
beliefs may be very different from their own.
Locating adults who are deaf or hard of hearing and who are interested
in working with babies and families in rural areas can be difficult. Deaf
adults tend to settle in urban or suburban areas where more services and
supports are available. To address the lack of individuals who are deaf
or hard of hearing in rural areas, some programs use distance technol-
ogy (e.g., Skype, Face Time). Although this can be successful, the quality
and cost of internet services available can create a challenge. Greg and
his team must figure out ways to provide families with opportunities to
engage with adults who are deaf or hard of hearing that require limited
cost and travel time. Greg will contact their state school for the deaf and
association of the deaf to investigate the availability of community and
outreach services that may be able to help. Commitment to funding for
these valuable opportunities is a priority for Greg’s team.

SUMMARY

Families with deaf or hard-of-hearing children consistently note that

adults who are deaf or hard of hearing provide an important source of
support (Hintermair, 2000; Jackson, 2011; Meadow-Orlans et  al., 2003;
Pittman, 2003). The benefit of a deaf mentor, role model, or guide ranks
160  Deaf and Hard-of-Hearing Communities

among the highest needs identified by parents of children who are deaf or
hard of hearing (Jackson, 2011).
It is clear that the influence of adults who are deaf or hard of hear-
ing in the lives of hearing families and their children who are deaf or
hard of hearing is positive and can impact the child and family for the
rest of their lives. Including deaf and hard-of-hearing adults in a range
of positions, including leadership roles, is essential to the success of a
quality early intervention program (JCIH, 2013). Despite the known
benefits, Greg and his colleagues know that establishing and sustaining
a deaf mentor, role model, or guide program and recruiting and hiring
deaf or hard-of-hearing adults will be challenging. They are convinced of
the value of these experiences for families and children and are confident
that the information and resources they have collected will guide them
as they develop and incorporate this critical component of services into
their early intervention programming.

SUGGESTED ACTIVITIES

1. When is the right time for a family to meet an adult who is deaf or hard
of hearing? Prepare to defend your position by providing a rationale and
describing the purpose of connecting with deaf and hard-of-hearing adults.
2. After families learn that their child is deaf or hard of hearing, they often
report that everything changes. Professionals can help families reclaim
what is still the same for their family and their new baby. Role play inter-
actions with a family that has recently learned their baby is deaf. Here
are some suggestions to get you started: (1) ask the family about their
dreams and hopes for their child; (2)  talk about the expectations they
have for their child related to friendships, education, interests, or careers;
(3) ask them what they believe will be the same or different for their child
because their child is deaf.
3. The Passionate Lives of Deaf and Hard of Hearing People by Karen Putz
features stories of deaf and hard-of-hearing people doing what they love,
for example, climbing mountains, racing cars, championing causes, trav-
eling the world, and more. Discuss a story that seemed “impossible” to
you or to a family with whom you work. Discuss what made these dreams
possible for the people in this book.
 Pittman et al.  161

4. Watch the following: Navigating Deafness in a Hearing World: Rachel Kolb

at  TEDxStandford  https://www.youtube.com/watch?v=uKKpjvPd6Xo.
Rachel shares several obstacles she faced in her life. What strategies
worked for her or for her family in overcoming those obstacles?

RECOMMENDED RESOURCES

1. American Sign Language

• ASL Nook A resource for families learning American Sign Language. It
includes ASL words, pictures, and stories. www.ASLnook.com.
• ASL University An online ASL curriculum resource center. www.
ASLUniversity.com.
2. American Sign Language Storybook Apps
• VL2 Storybooks The storybook apps produced by the Visual Language
and Visual Learning Science of Learning Center (VL2) at Gallaudet
University include children’s stories in both American Sign Language
and English. http://vl2storybookapps.com.
• Zoey Goes This is a series of ASL stories about a Deaf dog, Zoey, and
her human partner. They are written and signed by Rachel Berman
Blythe and illustrated by Jena Floyd. http://zoeygoes.com/about/.
3. American Society for Deaf Children (ASDC)
ASDC is a national organization that provides support, encouragement,
and information to families of deaf and hard-of-hearing children. ASDC
educates families about education for deaf and hard-of-hearing chil-
dren, Individualized Education Plan (IEP) rights, bilingualism, English
and ASL, and what it means to be deaf or hard of hearing. www.deaf-
children.org.
4. Gallaudet University
Gallaudet University was founded in 1864 as the first school where stu-
dents who were Deaf or hard of hearing could received an advanced
education. It was a federally chartered school for the deaf and hard of
hearing in Washington, D. C. Today, it remains the only liberal arts uni-
versity in the world that has been designed for the Deaf. The university
strives to make every possible accommodation for individuals who are
deaf or hard of hearing to ensure their academic and career success.
162  Deaf and Hard-of-Hearing Communities

The university is bilingual, ensuring that course instruction is acces-

sible in both ASL and English. https://www.gallaudet.edu.
5. ASLIZED!
An online video library of ASL literature and ASL linguistics research
(www.aslized.org). See Early Intervention: The Missing Link for a pres-
entation about the inclusion of deaf and hard of hearing profession-
als in early intervention (http://aslized.org/ei/).
6. Holcomb, T.  (2012). Introduction to American deaf culture. New  York,
NY: Oxford University Press.
This book provides a historical review and current view of Deaf culture; it
includes topics such as Deafhood, disability versus culture, American
Sign Language, and social interaction. Multiple references and re-
sources to other works can be found.
7. The Integrated Reading Project
The Integrated Reading Project is designed to help families learn to
read and enjoy books with their children who are deaf or hard of
hearing. It is specifically for families that have chosen a simulta-
neous communication approach (signing and voicing at the same
time). http://www.csdb.org/Default.aspx?DN=dc05dda4-a81e-4
792-bc54-f79d4812ba16.
8. National Association of the Deaf (NAD)
The NAD is a nonprofit organization that advocates for the rights of all
people who are deaf or hard of hearing in a variety of areas including
early intervention, education, employment, health care, technology,
telecommunications, youth leadership, and more. www.nad.org.
9. National Deaf Black Advocates (NDBA)
The NDBA is an advocacy organization for Black Deaf and Hard of
Hearing Americans and includes not only Black Deaf and Hard of
Hearing individuals, but also parents, professionals who work with
Black Deaf and Hard of Hearing youth and adults, sign language inter-
preters, and others. www.nbda.org.
10. National Deaf Children’s Society
The National Deaf Children’s Society (NDCS) is the leading charity in
the United Kingdom that provides resources, programs, and services
for deaf and hard-of-hearing children, adults, and their families. The
NDCS website offers information about their Deaf Role Model project
and British Sign Language (BSL). http://www.ndcs.org.uk.
 Pittman et al.  163

11. Sensual Cultures

This mobile app is a visual guide to cross-cultural conflicts and provides
an introduction into how Deaf and hearing cultures value sight, touch,
and sound. [Benedict, L.  (2013). Sensual Cultures (Version 1.0).
[Mobile application software. Retrieved from https://itunes.apple.
com/us/app/sensual-cultures/id643961910?mt=8.]
12. Shared Reading Project
The Shared Reading Project is designed to teach parents and caregivers
how to read to their deaf and hard-of-hearing children using American
Sign Language, and to use strategies to make book sharing more
effective.
http://www.gallaudet.edu/clerc_center/information_and_resources/
info_to_go/language_and_literacy/literacy_at_the_clerc_center/wel-
come_to_shared_reading_project.html.
13. World Federation of the Deaf
The World Federation of the Deaf (WFD) includes approximately 130
member countries that represent 70 million people who are deaf in-
ternationally. The WFD mission is to expand the acceptance of sign
language and to improve educational opportunities and human rights
for deaf people throughout the word. Http://wfdeaf.org.

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Hintermair, M. (2000). Hearing impairment, social networks, and coping: The
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Hoffman, J., Houston, K. T., Munoz, K. F., & Bradham, T. S. (2011). Periodic early
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Jackson, C. (2011). Family supports and resources for parents of children who are
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PART II

Early Intervention Practices

6 Getting Started: Hearing Screening,
Evaluation, and Next Steps
Rachel St. John, Linda Lytle, Debra Nussbaum, and Angela Shoup

Following a routine birth and prior to leaving the hospital, Abby

Cullen had a newborn hearing screening that she did not pass in either
ear. The hearing screener told the Cullen family that this sometimes
happens and not to be too concerned, but stressed the importance of
bringing Abby back to the hospital in 1 week to repeat the screening.
Abby did not pass the second screening, and was referred to Dr. Davis,
a pediatric audiologist, for a comprehensive audiological evalua-
tion to confirm her hearing status. After completing comprehensive
audiological testing, Dr. Davis confirmed that 5-week-old Abby was
deaf. He briefly discussed the evaluation findings and scheduled a
follow-up appointment to start the process of getting hearing aids for
Abby. He indicated that he would send the evaluation results to the
Cullen’s pediatrician, Dr. Lacey, and asked the family to sign a consent
form to refer their daughter for early intervention services.

169
170  Getting Started

GUIDING QUESTIONS

1. What information is important for the audiologist and other professionals

to share with families immediately following confirmation that a child is
deaf or hard of hearing?
2. How can medical and educational professionals collaborate to impart
information to families to positively impact their experience getting
started in raising a child who is deaf or hard of hearing?
3. How can professionals effectively collaborate to support families through
the initial identification that their child is deaf or hard of hearing?

COMPETENCIES ADDRESSED IN THIS CHAPTER

1. Screening, Evaluation and Assessment: Interpretation of Hearing Screening

and Audiological Diagnostic Information; Ongoing Developmental
Assessment; and Use of Developmental Assessment Tools to Monitor
Progress
2. Family-Centered Practice:  Family–Professional Partnerships, Decision

Making, and Family Support
3. Technology:  Supporting Development by Using Technology to Access

Auditory, Visual, and/or Tactile Information
4. Collaboration and Interdisciplinary Models and Practices

INTRODUCTION

A family’s journey with their child who is deaf or hard of hearing begins at
the time of the baby’s hearing screening and subsequent referral for fur-
ther hearing evaluation. Unless a family has some reason to suspect that
their child might be deaf, this is usually the first time that they have even
considered hearing as an issue for their child. The initial screening result
is the beginning of a series of many medical appointments. Following the
actual confirmation that their child is deaf or hard of hearing, a family
will encounter many decisions regarding their child’s development.
 St. John et al.  171

Even with the most efficient early hearing screening and intervention
programs, there is a gap between the time of identification by the audi-
ologist and the point at which a family formally begins early intervention
services. This is a crucial time because families often have many questions
and need quality support. This period, from hearing screening to refer-
ral for early intervention services, is the primary focus of this chapter.
The chapter will address many issues that families and the professionals
working with them should consider when an infant is identified as deaf
or hard of hearing, as well as how professionals can effectively collaborate
to make the identification and intervention process a positive one.

THE HEARING SCREENING AND EVALUATION PROCESS

The Hearing Screening Process

The Cullens received the results of the newborn hearing screening in the
hospital, but were not sure what it meant. One week later, they brought
Abby back to repeat the hearing screening and learned that the screening
test used was called Otoacoustic Emissions. When Abby did not pass the
second screening, the Cullens were told to follow-up as soon as possible
with a pediatric audiologist for detailed comprehensive hearing testing to
confirm Abby’s hearing abilities.
There are two types of commonly used hearing screening technolo-
gies: Otoacoustic Emissions (OAE) and Automated Auditory Brainstem
Response (AABR). OAE is a quick and easy test that presents a sound to
the ear through a soft probe that is placed in the infant’s ear canal. A typi-
cally functioning ear responds to sound in a specific way. If this response
is not observed, it indicates that there is a possibility that the hearing
system is not functioning. The OAE indicates only whether an infant’s
ear is responding to the sounds presented during the screening. If a child
does not pass the hearing screening, it indicates that further evaluation
is necessary.
For the AABR screening, small electrodes are placed on the baby, typi-
cally on the back of the neck, forehead, and cheek or shoulder. Sounds
are presented through earphones, and sensors pick up brain waves that
172  Getting Started

occur in response to the sounds. Similar to the OAE, a screening AABR

does not identify a child’s precise hearing level; it indicates only whether
further testing is necessary.
For both the screening OAE and the screening AABR, the result is
automatically processed and calculated by a computer, and is recorded
as either a “pass” or a “did not pass/refer.” The terms “did not pass” or
“refer” are suggested as an alternative to the term “failed” to avoid the
implication of “failure” on the part of a newborn. There is no universal
agreement among professionals, however, about which terms should be
used. Providers should be aware that families might be exposed to these
terms interchangeably.
The professional who shares the hearing screening results with the
family needs to communicate very clearly both the importance and limi-
tations of the information that has been obtained. It is important for a
family to realize that a hearing screening is not a definite test of hear-
ing level and that a detailed follow-up assessment is needed. The hear-
ing screener must strike a balance between creating unnecessary anxiety
about a hearing screening that is not passed and minimizing the results
to the point that the family loses sight of the importance and urgency of
follow-up testing.
If a newborn does not pass the initial hearing screening, this does not
mean that the baby is deaf or hard of hearing. A baby may not pass the
screening for a variety of reasons. Sometimes issues may resolve in the
first weeks of life, and sometimes the issues are permanent. For example,
debris in the ear canal just after birth, also known as vernix, or fluid in
the middle ear may cause a “did not pass” result on the newborn hear-
ing screening. The American Academy of Pediatrics (AAP) recommends
that all infants who do not pass their hearing screening, for any reason,
receive a full audiological evaluation by 3 months of age.

The Hearing Evaluation Process

The Cullens made an appointment for Abby to see Dr. Davis, a pediatric
audiologist, for a complete hearing evaluation. Dr. Davis explained that
he would conduct a battery of tests. Some of the tests would be objective
 St. John et al.  173

tests and would not require a behavioral response from Abby, whereas
other tests would require an observation of how Abby responds to sound.
He explained that a combination of these tests would be used to confirm
Abby’s hearing ability.
It is recommended that a pediatric audiologist specifically trained
to test the hearing of infants and toddlers conduct the comprehensive
audiological evaluation. One of the tests central to confirming whether a
child is deaf or hard of hearing is an Auditory Brainstem Response (ABR)
test. The ABR test provides information about the inner ear (cochlea)
and brain pathways for hearing. For diagnostic ABR testing, similar to
the AABR screening, the audiologist attaches sensors/electrodes to the
infant to record the brain responses to sounds. Different from the screen-
ing AABR, the diagnostic ABR uses sounds of varying loudness and fre-
quency to record brain wave activity in response to sound. This helps
determine the level at which the child responds to sounds at specific fre-
quencies. The ABR test can be completed only if the child is sleeping or
lying perfectly still with his or her eyes closed. When a baby is younger
than 6 months of age, the ABR test often can be done while he or she
naps. However, this test may need to be completed under mild sedation
for infants who cannot maintain natural sleep long enough for testing to
be completed.
Additional tests, such as Behavioral Observation Audiometry (BOA),
examine how a child responds to sound (e.g., changes in breathing pat-
terns, sucking, reflexes), and can also be used to help confirm ABR find-
ings. These tests are not as definitive as ABR testing because they are
based on observations of the infant’s behavior, but the results of BOA
can serve as an important adjunct to other testing by the audiolo-
gist as part of the testing process. Testing of middle ear status should
also be completed to confirm that there are no middle ear issues con-
founding the findings of the hearing tests that are completed [American
Speech-Language-Hearing Association (ASHA), 2004].
Dr.  Davis informed the Cullens that Abby’s tests demonstrated her
hearing level was in the profound range in both ears, and that her hearing
condition, described as sensorineural, was permanent and was related
to the part of the ear called the inner ear. Dr. Davis explained that this
174  Getting Started

meant that she is deaf in both ears and could hear only very loud sounds,
such as an airplane or a lawn mower.

THE HEARING SYSTEM

When a family learns that their child is deaf or hard of hearing, they
are faced with unfamiliar, and potentially confusing, medical and audio-
logical information. It is helpful for them to have a basic understand-
ing of the hearing system to sort out this new information. There are
four main components of the auditory pathway or hearing system: the
outer ear, the middle ear, the inner ear, and the auditory (8th) nerve and
brain. Recommendations for intervention services relate to which of the
four components, or combinations of components, may be involved, and
may be important for determining eligibility for services under state pro-
grams directed by Part C of the Individuals with Disabilities Education
Act (IDEA Infant and Toddler Coordinators Association and National
Center for Hearing Assessment and Management, 2011). The types of
hearing conditions reflect the specific point in the hearing system at
which function is atypical. See Table 6.1 for a description of the Types of
Hearing Conditions.
Families will also learn that children who are deaf or hard of hearing
have a range of hearing levels. The goal of the audiological evaluation is to
identify a child’s hearing levels at various frequencies (pitches) of sound,
and to determine the pattern of a child’s hearing across frequencies. In the
field of audiology, hearing levels are described as ranging from “within
normal range” to “profound” and there are various descriptions of hearing
patterns in terms of how a child may process the sounds of speech. It is
important for families to learn about the audiological information regard-
ing their child and how this information guides the fitting of hearing aids
and recommendations for developing language and communication.
A child’s hearing ability can change over time. The incidence of infants
who are born deaf or hard of hearing in the United States is between one
and three in 1,000 live births [Centers for Disease Control and Prevention
(CDC), 2013] and even higher in developing countries. (See Chapter 10,
 St. John et al.  175

Table 6.1  Types of Hearing Conditions

Conductive This occurs when sound is not effectively transmitted

through the outer and middle ear to the inner ear.
This can happen for a variety of reasons: the ear canal
is blocked, something is interfering with the function
of the middle ear, or the ear itself does not form
correctly during pregnancy. Depending on the reason,
conductive hearing conditions are often responsive to
treatment and may resolve.
Sensorineural This occurs when sound does not effectively travel
through the inner ear, up the auditory nerve, and to
the brain for processing and understanding. This type
of hearing condition is generally permanent in nature.
Mixed Sometimes conductive and sensorineural hearing
conditions can occur together. A child, for example,
who has sensorineural involvement could also have
fluid in the middle ear, which would result in an
overlapping conductive hearing component. The
conductive component may or may not be temporary.
Auditory Also referred to as Auditory Dys-synchrony or
Neuropathy Auditory Neuropathy Spectrum Disorder (ANSD),
this unique type of hearing condition occurs when
the transmission of sound from the inner ear to
the brain is not effective. Infants who are born
extremely prematurely, or require extensive life-saving
interventions at birth, are at higher risk for developing
auditory neuropathy. For some infants with auditory
neuropathy at birth, developmental maturation of
the auditory system may partially or fully resolve the
neuropathy. For others, it will be permanent (Uus,
2011). Auditory neuropathy can be challenging for
both families and health care providers, as it varies
from person to person, and does not consistently
respond to any one treatment opportunity. Some
children may benefit from traditional hearing aids,
and others may not (Roush, Frymark, Venediktov, &
Wang, 2011; Santarelli, Rossi, & Arslan, 2013).
176  Getting Started

Early Intervention in Challenging National Contexts.) This number increases

significantly as a child gets older, and by the time a child is school-aged, it
is estimated that 9–10 children in 1,000 will be identified as deaf or hard
of hearing [American Academy of Audiology (AAA), 2011]. Health care
providers can assist families in understanding the importance of regular
hearing evaluations, and monitor for possible changes in hearing ability
over time. In fact, it is estimated that among school-aged children whose
hearing levels significantly impact their learning, up to half passed their
initial newborn hearing screenings (AAA, 2011).

FAMILY REACTIONS AND PROFESSIONAL RESPONSES

Families’ Reactions to the Initial Screening and Identification Process

The Cullens thought Abby’s hearing was going to be just fine and were
shocked to learn that she was deaf. Dr.  Davis told the Cullens that he
would send the test results to Abby’s pediatrician. After he shared the test
results with the Cullen family, he asked them to sign a consent form so
that he could refer them to other professionals who were skilled in early
intervention for young children who are deaf or hard of hearing. The
Cullens left the audiology clinic in disbelief, with many questions about
what this would mean for their child.
Although a family may be actively involved in the screening and iden-
tification process, it is not until the full evaluation is complete and the
results are shared that the family is confronted with the reality that their
baby is deaf or hard of hearing. Unless a family has had previous expe-
rience either having or knowing another child who is deaf or hard of
hearing, they probably never thought this could be a possibility for their
child. This places the audiologist in the position of being a first responder
responsible for informing families of the test findings, as well as what to
expect from the audiological follow-up and early intervention processes.
The way in which audiological evaluation findings are conveyed to
families plays an important role in a family’s reaction and the interven-
tion steps taken (ASHA, 2008). Audiologists may struggle with providing
either too much or not enough information to families. It is important
 St. John et al.  177

that they be sensitive to the individual characteristics and needs of fami-

lies and monitor the pace and process for sharing audiological findings
and their implications (Meadow-Orlans, Mertens, & Sass-Lehrer, 2003).
Laugen (2013) suggests that audiologists consider the following in the pro-
cess of sharing information with families: (1) clearly explain whether there
is ambiguity in the test findings as well as the professional recommen-
dations related to the test findings; (2) provide comprehensive informa-
tion; (3) provide information both in writing and through conversation;
(4) have all essential family members present; (5) provide connections to
professionals for follow-up (not only recommendations specific to audiol-
ogy); and (6) support independent information seeking in families.
Families receive confirmation that their baby is deaf or hard of hear-
ing from health care professionals, who understandably tend to focus
on the medically related actions, such as fitting of hearing aids, genetic
counseling, or an appointment with an ear, nose, and throat (ENT) doc-
tor (Matthijs et al., 2012). Families may not understand how the medi-
cal aspects of the audiological evaluation process relate to their child’s
language, cognitive, and psychosocial development. It is important that
health care professionals understand that an optimal early identification
and intervention process involves the collaboration of all providers includ-
ing audiologists as well as early intervention professionals (Fitzpatrick,
Angus, Durieux-Smith, Graham, & Coyle, 2008; Laugen, 2013).
If the early intervention process is to start well, audiologists will take
into consideration the many key points detailed in the “What Else”
Checklist:  Guiding Audiologists in Their Role with Families (Grimes &
DesGeorges, 2013). This checklist, developed in collaboration between
the Center for Disease Control Provider Education and Parent-to-Parent
Committees, addresses considerations for audiologists as they share infor-
mation that goes beyond basic descriptions of a child’s hearing abilities.
The guidelines specifically ask audiologists to self-reflect on questions
such as the following:

• Did I allow the parent to guide me in what they need?

• Have I  considered the family’s perspective regarding their
child’s needs?
178  Getting Started

• Have I considered the family’s priorities in our discussion?

• Did I talk about this experience in a “nonmedical” way?

The checklist also includes guidance for audiologists on providing infor-

mation and resources to families about the various approaches to lan-
guage and communication typically used with young children who are
deaf or hard of hearing as well as information to support families in con-
necting with resources in their region.

Families’ Information Processing

After learning from the audiologist, Dr.  Davis, that Abby is deaf, Mrs.
Cullen went home and immediately did an internet search for “deaf chil-
dren.” Mr. Cullen preferred to wait until their next appointments when
they would have the opportunity to talk with Dr. Davis and Abby’s pedia-
trician, Dr. Lacey, again.
Acquiring and digesting information are ongoing processes for
families. Professionals may struggle with the desire to provide impor-
tant information to families without overwhelming them. Each family
is unique, and will acquire and process information in their own way
and at their own speed. To assume a universal “timeline of readiness”
for every family is unrealistic. Although some families want informa-
tion available as soon as possible, other families prefer to receive infor-
mation on an “as needed” basis. Professionals may do well by asking
families what information they want, guiding them through the vast
array of resources, and being responsive to their questions and requests
for more information. Being responsive and sensitive to families’
information needs establishes a strong foundation of mutual respect
(Meadow-Orlans et al., 2003)
There is no “one size fits all” when it comes to making information
meaningful for families of very young children who are deaf or hard
of hearing. Although every family is unique, there are some common
ways in which parents tend to learn new information. Les Schmeltz
(2013) describes four overarching learning styles for how parents take in
and process new information. See Table 6.2, How Families Take in and
Process Information.
 St. John et al.  179

Table 6.2  How Families Take in and Process Informationa

Dynamic Learners Learn by hands-on doing (“trial and error”)

Analytic Learners Want all information and research available
Common Sense Learners Want just the basic facts
Imaginative Learners Acquire information best through social
interactions, talking, and consulting with
others
Adapted from Schmeltz (2013).
a

These different learning styles influence individual preferences for

acquiring information. Although some family members want to read
peer-reviewed research articles, others prefer having the information
summed up succinctly for them. Internet users may prefer a list of web-
sites to access information. Others may prefer watching a video or dis-
cussing a topic with a professional.
There are also diverse ways professionals share information with
families. The art of delivering information is ideally honed by the indi-
vidual provider through years of experience working with families,
and adapted to meet the unique needs of each family (Laugen, 2013).
Although each provider develops his or her own best sense of how to
connect meaningfully with families, there are some ineffective styles of
communication that can create problems for the provider–family rela-
tionship. Schmeltz (2013) illustrates seven ineffective communication
styles: (1) overwhelm them with the facts; (2) the hit-and-run profes-
sional; (3)  the busybody; (4)  sympathy, not empathy; (5)  the canned
presentation; (6)  the nonstop talker; and (7)  don’t worry we can fix
it (p.  9). None of these approaches promotes a family–professional
relationship.
Professionals need to be prepared to share information with families
in a structured and balanced way (Matthijs et al., 2012). They should be
able to

• share test results in a positive and constructive manner with families

after they have first received the news that their child is deaf or hard
of hearing;
180  Getting Started

• provide information, guidance, and emotional support to facilitate

the development of informed, independent, and empowered fami-
lies (ASHA, 2008);
• guide families in filtering the vast amount of information available
on the internet (ASHA, 2008);
• share assessment findings and recommendations with families who
are deaf in a culturally sensitive manner;
• share information using the family’s preferred language, comfort-
ably using interpreters as needed;
• share language and communication opportunities in a manner that
goes beyond providing a “menu” of approaches, and acknowledges
the importance of capitalizing on a child’s natural skills and charac-
teristics (Young et al., 2006);
• help families recognize that all decisions are subject to change over
time and that initial choices are not set in stone (ASHA, 2008).

COLLABORATION AMONG PROFESSIONS AND PROFESSIONALS

The Medical Home
The Cullens were fond of Abby’s pediatrician, Dr.  Lacey. She admitted
upfront to the Cullens that she had not had the opportunity to take care
of many children like Abby who are deaf or hard of hearing. The Cullens
were impressed that Dr.  Lacey was quick to consult the guidelines for
caring for deaf and hard-of-hearing children established by the American
Academy of Pediatrics (2014), and was honest with them about what she
knew and did not know. The Cullens appreciated that Dr. Lacey was will-
ing to work with them to help coordinate all of Abby’s care.
In 1967, the term “medical home” first appeared in a publication by the
AAP. This referred specifically to the centralizing of medical records as a
way to address overlaps and gaps in medical care for children with special
health care needs (Sia, Tonniges, Osterhaus, & Taba, 2004). The defini-
tion of the medical home evolved over the next several decades, and in
1992 the AAP published its first policy statement defining medical home
as a philosophy of care applying to all infants, children, and adolescents.
 St. John et al.  181

Children with multiple medical conditions benefit from an effective

medical home that facilitates decisions about their care and development.
Traditionally, the medical home role is taken on by the primary care pro-
vider (PCP). The child’s pediatrician, a family practitioner, the physician’s
assistant, or a nurse practitioner may fill the medical home PCP role.
The medical home provider is the “front line” in working with a fam-
ily and child to coordinate and interpret the multiple recommendations
and opportunities for care. As described in the 2007 Joint Committee on
Infant Hearing (JCIH) position statement, “The primary health care pro-
fessional acts in partnership with parents in the medical home to identify
and access appropriate audiology, intervention, and consultative services
that are needed to develop a global plan of appropriate and necessary
health and habilitative care for infants identified with hearing loss and
infants with risk factors for hearing loss” (p. 6). According to the most
recent AAP policy statement revision in 2002, an ideal medical home
has seven defined characteristics, in that it is accessible, family centered,
continuous, comprehensive, coordinated, compassionate, and culturally
effective. For an in-depth description of effective medical home char-
acteristics, see the AAP Medical Home weblink in the Recommended
Resources section at the end of this chapter. Because educators and
intervention specialists do not fall under the category of health care pro-
viders, medical home providers and early intervention professionals can-
not communicate with each other without permission from the family.
Although it is not practical or necessary to communicate every aspect of
the intervention process with medical home providers, it can be helpful
to share information from time to time with the medical home.

Coordinated Care for Children with Developmental

or Physical Conditions
While the Cullens were at Dr.  Lacey’s office for a follow-up visit, they
noticed another family whose son was connected to equipment and
monitors and who appeared to have a number of medical issues. In talk-
ing with the family, the Cullens learned that their son was born extremely
prematurely. In addition to medical complications involving his heart,
182  Getting Started

lungs, and other body systems, he also had a hearing level similar to
Abby’s. The Cullens, who until this time have been very preoccupied
with Abby’s needs, had a difficult time imagining how these parents could
handle all of their son’s medical issues in addition to being deaf.
Some families may have critically ill children, whose medical concerns
take priority over the issues related to hearing. These families may be
initially less concerned about their child’s hearing, and have different
questions from other families. Families of children who have complex
medical needs may experience patterns of stress that are qualitatively
different from families whose children are deaf only (Hintermair, 2000;
Meadow-Orlans et  al., 2003). With continuing advancements in mod-
ern technology, premature infants and children with complex medi-
cal syndromes and illness are surviving and living longer than in years
past. According to the national survey of children and youth from the
Gallaudet Research Institute, nearly 40% of deaf or hard-of-hearing stu-
dents had at least one identified condition in addition to being deaf or
hard of hearing (Gallaudet Research Institute, 2010). Researchers have
found that families with a medically complex child can experience addi-
tional strain in caring and making decisions for their child (Hintermair,
2000; Pipp-Siegel, Sedey, & Yoshinaga-Itano, 2002).
Family members and friends, though well intentioned, may minimize
or invalidate a parent or caregiver’s emotional response in an attempt to
make the parent feel better. Families may experience feelings of fear, loss
of control, or frustration. Others may feel guilt for a perceived wrong
that somehow led to their child’s medical situation (Luterman, 2004).
Families with medically complex infants and children often need help
from the medical home and other interdisciplinary team members to
access appropriate services and support.
Some families, particularly those with children who have multiple
complex medical needs, elect to set up a formalized medical care coor-
dination plan that can be documented and shared among providers and
caregivers. A  family member, social worker, formal care coordinator,
nurse, or other individual who has knowledge of the child and the family
can do this. Care coordination planning ideally includes plans for both
emergency and routine situations and can be shared with the family’s
 St. John et al.  183

permission at Individualized Family Service Plan (IFSP) meetings so all

key providers can work from the same construct. Sample templates for
care coordination plans can be easily accessed online through the Medical
Home Portal website, and are included in the Recommended Resources.

The Interdisciplinary Team of Specialists

The Cullens put together a notebook containing information and medical
records from different specialists providing care and support for Abby. In
her first few months of life, Abby had already seen an audiologist, an oto-
laryngologist (ENT physician), an ophthalmologist (eye physician), and a
geneticist. The Cullens were not sure why all of these specialists had to be
involved.
All children and families benefit from a collaborative approach to care,
whether the focus is medical, educational, or psychosocial. From the initial
screening and identification process, the infant is typically under the care of
an audiologist. The family with a deaf or hard-of-hearing child may then be
referred to multiple health care specialists. The Joint Committee on Infant
Hearing recommends appropriate subspecialty referrals immediately after
identification, and not later than 6  months of age [Joint Committee on
Infant Hearing (JCIH), 2007]. For all infants and children who are deaf or
hard of hearing, there are a minimum of three specialty services that should
be included in coordinated care with the medical home provider: an oto-
laryngologist, an ophthalmologist, and a geneticist.
Otolaryngology (ENT) physicians provide a full medical examination
of the head and neck and help explain the reason a child may be deaf
or hard of hearing. The ENT also makes recommendations to the fam-
ily and primary care physician regarding possible medical and/or surgi-
cal treatments. The otolaryngologist, in collaboration with the medical
home provider and the family, monitors long-term treatment outcomes
and participates in assessments to determine whether the infant or tod-
dler is a candidate for hearing aids, cochlear implants, or bone-anchored
hearing devices (JCIH, 2007).
Medical home providers do not always realize the importance of
including the ophthalmologist on the care team for infants and toddlers
184  Getting Started

who are deaf or hard of hearing. The prevalence of vision problems in

these children is approximately 40–60%, significantly higher than the
general population (Nikolopoulos, Lioumi, Stamataki, & O’Donoghue,
2006). Vision problems, in addition to being deaf or hard of hearing,
can impact the development and the services recommended for these
children. The ophthalmologist may be the first professional to identify a
condition such as Usher Syndrome, which is characterized by a progres-
sive decrease in hearing as well as vision. The communication of results
of annual eye examinations to the medical home provider is crucial to
maintaining coordinated care for a child who is deaf or hard of hearing.
The option to visit a genetic specialist should be offered to all fami-
lies of children who are identified as deaf or hard of hearing. The medi-
cal geneticist may be able to help families understand why their child is
deaf or hard of hearing. Genetic counseling may help families under-
stand the possibilities of future children being deaf or hard of hearing
(JCIH, 2007). It is important to let families know that a genetics evalu-
ation does not guarantee finding a genetic reason for why their child is
deaf or hard of hearing, and not every family wants a genetics assessment.
Nonetheless, the primary care provider should offer a referral for genetic
counseling, and help set realistic expectations for the kind of informa-
tion that may be discovered. See the Gallaudet University website under
the Recommended Resource section for more information on genetic
counseling.
As the child and family are referred to early intervention services, it is
beneficial for an audiologist to have an ongoing and clearly defined role
on the team working with the family and child. See Table 6.3 for Roles of
the Pediatric Audiologist.

IMPORTANCE OF AN EARLY START

The Cullens want to make the best possible choices for Abby, and are
doing their best to follow the advice that they are being given. They won-
der why all of the professionals caring for Abby have been encouraging
things to move forward so quickly.
 St. John et al.  185

Table 6.3  Roles of the Pediatric Audiologist

Monitoring hearing levels

Fitting and monitoring hearing aid(s) benefit and use
Interpreting audiological findings with families and other members of the
early intervention team regarding the potential impact on the child’s
ability to understand and use spoken language
Collaborating with other early intervention professionals to educate families
regarding cochlear implant technology, whether their child is a candidate,
and the various factors impacting spoken language outcomes with a
cochlear implant
Counseling families as to the varied spoken language outcomes possible for
each child regardless of hearing levels and technologies used
Counseling families regarding the benefits of early language access in any
modality to minimize language delay and maximize cognitive outcomes
Collaborating with other early intervention professionals in assessing and
monitoring a child’s listening and spoken language progress with his or
her hearing aid(s) and/or cochlear implant(s)
Recognizing when families may have significant distress in processing
information and connecting them with counseling resources as
appropriate

For infants who do not share a common language with their families,
being born deaf or hard of hearing is considered a developmental emer-
gency (Wyckoff, 2013). It is important to convey to families why time is
critical in following up on recommendations for services. Infancy and
early childhood are the times at which brain pathways are created and
cemented, and lack of meaningful input can lead to significant and per-
manent developmental delays (Easterbrooks & Baker, 2002; Harris, 2010;
Stredler-Brown, 2010; Yoshinaga-Itano, 2006). All children need to estab-
lish early language foundations, and for children who are deaf or hard
of hearing, this may include spoken language, visual language, or some
combination of both (Young et al., 2006). (See Chapter 8, Collaboration
for Communication, Language, and Cognitive Development.)
To reinforce the urgency of getting an early start, professionals can
refer to the recommendations of experts and stakeholders such as the
186  Getting Started

Joint Committee on Infant Hearing (JCIH, 2007). The JCIH 2007 Position
Statement is endorsed by the AAP and recommends that the screening
process, including outpatient rescreening, should be completed no later
than 1 month of age. For infants who do not pass their hearing screening,
the identification and confirmation of hearing ability should occur no
later than 3  months of age, and appropriate intervention opportunities
should be initiated no later than 6 months of age. These are often referred
to in the area of Early Hearing Detection and Intervention (EHDI) as
the “1-3-6 guidelines.” Families may also benefit from research findings
and best practices in early intervention for children who are deaf and
hard of hearing, familiarity with the implications for their child and
family, and resources that can impact development (Russ, Dougherty, &
Jagadish, 2010).

Transitioning from Early Identification to Early Intervention

The Cullens were contacted by an early intervention service coordina-
tor, Ariana Sykes, from their local Part C agency. She asked to visit their
home to answer questions they had, conduct an initial developmental
assessment, and discuss the next steps.
A service coordinator from the local Part C agency is typically assigned
to coordinate the intervention part of the EHDI process. In many states,
Part C agencies have dedicated service coordinators who are knowl-
edgeable about the needs of children who are deaf or hard of hearing.
Unfortunately, this is not always the case in every community. The goal
is to connect families quickly with early intervention service providers
who have expertise in working with families who have deaf or hard-of-
hearing infants or toddlers. Fortunately, for the Cullens, Ariana has expe-
rience, knowledge, and skills in working with infants who are deaf or
hard of hearing and their families.
The early intervention process typically starts with an initial assess-
ment to gather information about the child as well as about the family’s
priorities and needs. This leads to the development of an IFSP. The IFSP
occurs under the scope of Part C of the Individuals with Disabilities
Education Act, commonly referred to as IDEA. The IFSP is designed to
coordinate the many services and supports recommended for the child
 St. John et al.  187

and family. (See Chapter  7, Developmental Assessment, and Chapter  9,

Individualized Family Service Plans and Programming.)
There are a variety of early intervention service providers that may
work with a family according to the needs identified during the IFSP.
Depending upon the needs of the child, the early intervention team may
want to ask the family for permission to share the IFSP with their pri-
mary care provider. Many early intervention professionals play a critical
role in providing supports and services to families. These services include
(1)  educating the family on a range of topics related to raising a child
who is deaf or hard of hearing; (2) providing families with the skills to
facilitate language and communication; and (3)  connecting families to
resources such as parent organizations, agencies, and other families who
have a child who is deaf or hard of hearing. Early intervention service
providers should also connect families and their children with adults
who are deaf or hard of hearing. (See Chapter 5, Collaboration with Deaf
and Hard-of-Hearing Communities.)

LANGUAGE, COMMUNICATION, AND TECHNOLOGY

Dr. Lacey reinforced the importance of Abby acquiring language so that

she could progress in all areas of development. The Cullens were naturally
concerned about Abby’s ability to communicate. They wondered how she
would learn to talk, or if she would be able to talk at all. They wanted to
know how to support Abby’s language and communication development
and connect with other people in her life.
Families often face a host of recommendations and professional opin-
ions on how to encourage their child’s language and communication
development. Soon after it is determined that a child is deaf or hard of
hearing, audiologists generally recommend that families begin the process
for obtaining hearing aids. This process typically begins with an appoint-
ment with the ENT, as mentioned earlier. It is natural for many families,
particularly hearing families, to want their children to develop listening
and spoken language. Although it is impossible to predict with absolute
certainty how much an individual child will benefit from hearing aids
188  Getting Started

and develop spoken language skills, most resource-rich countries, such

as the United States, tend to recommend hearing aids or other listening
technologies (such as cochlear implants) for children who are deaf or
hard of hearing.
When a child is deaf and does not appear to benefit from hearing aids,
families are often introduced to the technology of a cochlear implant as
a possibility for their child. Cochlear implants, which provide electrical
stimulation directly to the hearing system, provide access to sound that
may be more beneficial for some children than traditional hearing aids
(Geers & Nicholas, 2013). Cochlear implantation usually requires a trial
period with hearing aids as part of the implantation candidacy process.
Not all children are candidates for cochlear implants, and it is important
for families and professionals to acknowledge the possibility of variable
outcomes when setting expectations for spoken language development
(Geers, 2006; Nicholas & Geers, 2006; Niparko et al., 2010; Peterson,
Pisoni, & Miyamoto, 2010).
Listening technologies and spoken language are only one component
of maximizing early language development (Young et al., 2006). As fami-
lies are introduced to strategies for communicating with their child, it is
critical that they also understand the role of visual and tactile avenues
such as eye contact, touch, body language, gestures, and sign language
to facilitate meaningful connections and promote cognitive development
(Bailes, Erting, Erting, & Thumann-Prezioso, 2009; Mayberry & Eichen,
1991; Meadow-Orlans et al., 2003; Meadow-Orlans, Spencer, Koester, &
Steinberg, 2004).
Families need to be fully informed of the evidence demonstrating
how visual language can support early language development for chil-
dren who are deaf or hard of hearing, including children who may access
sound through hearing aids or cochlear implants [Visual Language and
Visual Learning Science of Learning Center (VL2), 2011,  2012]. Early
intervention specialists can connect families with resources to learn how
to support the visual aspects of their child’s language and communication
development, as well as visual technologies available (Visual Language
and Visual Learning Science of Learning Center, 2013). At the same time
families need to know that auditory and visual approaches to developing
 St. John et al.  189

language are not mutually exclusive, and both visual and auditory strate-
gies should be addressed and evaluated for each child. In the special case
of dual sensory involvement, for example, a child who is deaf and also has
low vision or is blind, providers need to be prepared to connect families
with appropriate deaf–blind organizations that can provide services such
as tactile language skills development, collaborative educational plan-
ning, and eventual independence training, among others.

EMOTIONAL WELL-BEING

Mr. and Mrs. Cullen wonder if their child will be able to lead a “normal”
life. During Mrs. Cullen’s pregnancy, they had hopes and dreams for their
child, plans for the kind of things they would do together as a family, and
visions of what their child would become when an adult. Now these and
many other expectations they had feel threatened.
The weeks and months after identification may be a mix of emotions
for families. Some may experience guilt in thinking that they did, or did
not do, something to cause their child to become deaf. Others may grieve,
believing they have lost hope of having a “perfect” child. Still others may
be motivated to move forward quickly. The time period immediately fol-
lowing a family learning their child is deaf or hard of hearing presents
professionals with the opportunity to provide support to families and
help them see their child in a positive way. Promoting a hopeful, opti-
mistic outlook can move a family toward possibilities that they might
not have initially imagined, and away from a perspective focused on loss.
It can be a time during which professionals can begin to support fami-
lies in thinking about the overall development of their child, instead of
focusing solely on their child not being able to hear. Emotional support
during this time period is critical. Families need providers who can listen
actively, show families that they understand their point of view, and exer-
cise patience and empathy as the family absorbs new information.
It is important for families not to lose sight of outcomes beyond lan-
guage, including the need for children to (1)  possess a strong sense of
self and positive self- esteem; (2) develop meaningful relationships with
190  Getting Started

others; (3) communicate their needs and wants as well as complex thoughts

and ideas; (4) achieve academically and vocationally; and (5) find a place
of significance in the world (Calderon & Greenberg, 2011). It is critical
that families understand that cognitive development and social compe-
tence are connected, and growth in each of these areas influences the
growth of the other. Children need language in order to develop social
skills. Growth in a child’s ability to communicate effectively and think
critically promotes opportunities for more social interactions, which in
turn increases a child’s opportunity to acquire more information and use
language in meaningful ways.
The Cullens have a weekly home visit scheduled with their early inter-
vention service coordinator, Ariana Sykes. She is available to answer
the Cullen’s questions about Abby’s development, and share the many
resources about working with children who are deaf or hard of hearing.
They have an appointment scheduled with the audiologist, Dr. Davis, to
get hearing aids for Abby, and realize that this is only one step toward
helping Abby learn language. They are looking forward to meeting a
family who lives in a neighboring town who also has a daughter who is
deaf. They are also scheduled to meet with a professional who works in
the early intervention program who is deaf herself and mentors families
about what it means to be deaf. The Cullens remain anxious about Abby’s
future, but now believe that they are connected with the appropriate sup-
ports and services to guide them.

SUMMARY

Families benefit from providers who are open to collaboration across

disciplines. It is not realistic to think that any one audiologist, primary
care provider, specialist, or service provider will be able to provide com-
plete information on opportunities for language, as well as cognitive and
social emotional development. Families need providers who know their
own areas of expertise as well as their limitations, and are willing to con-
nect with other professionals and resources to help families support their
child’s overall development.
 St. John et al.  191

Although reactions to discovering a child is deaf or hard of hearing

differ from family to family, professionals can support families to frame
their perspectives in ways that help them view their journey positively,
focusing on what their child can achieve rather than what he or she can-
not. Particularly in the time period immediately following the determi-
nation that a child is deaf or hard of hearing, an attitude of caring and
collaboration, and a focus on the opportunities available to all children
who are deaf or hard of hearing, can help set high expectations as families
and professionals work together in partnership.

SUGGESTED ACTIVITIES

1. Review your state’s Early Hearing Detection and Intervention website.

Become more familiar with your state system, paying attention to more
than just the information presented. Ask yourself questions such as the
following:  What is the prevalent tone of the site and does this repre-
sent my approach with families? Is this site accessible to all, considering
issues such as culture, language, and disability? How are deaf individu-
als/families portrayed, and again, does this portrayal match my thinking?
Apply this same line of thinking to brochures and information provided
by local hospital hearing screening programs, as well as information pro-
vided to parents from your own practice or agency.
2. If you are an early intervention specialist, identify the members of the medi-
cal team caring for the families and children in your program. With permis-
sion from families, make a professional connection with each of them.
3. Interview an early intervention provider. Include questions such as the
following:  Why did you become interested in this field? What was your
training like? What is the scope of your work—do you work with a variety
of families? Focus on asking questions related to the provider’s first con-
tact with families, and what happens after families are initially referred for
early intervention services.
4. Invite a family of a child who is deaf or hard of hearing to share their story
with you. Let the family’s story unfold without imposing an agenda. Do not
focus only on the child. Learn about the family’s origin, home language(s),
family members, and hopes, dreams, successes, and failures. Does what
you learned challenge any preconceived concepts? Are you surprised by
anything you learned?
192  Getting Started

RECOMMENDED RESOURCES

1. American Academy of Pediatrics (AAP):  Early Hearing Detection and

Intervention (EHDI) by State http://www.aap.org/en-us/advocacy-and-
policy/aap-health-initiatives/PEHDIC/pages/Early-Hearing-Detection-
and-Intervention-by-State.aspx.
This webpage, part of the website of the American Academy of Pediatrics,
provides valuable information for professionals related to the AAP EHDI
Chapter Champions initiative (which identifies an individual or individu-
als who can lead and respond to provider concerns regarding newborn
hearing screening in each state) as well as links to EHDI information
from the Centers for Disease Control and Prevention (CDC) and the
National Center for Hearing Assessment and Management (NCHAM).
2. Guidelines for Audiologists Providing Informational and Adjustment

Counseling to Families of Infants and Young Children with Hearing Loss
Birth to 5 Years of Age http://www.asha.org/policy/GL2008-00289.htm.
This ASHA document shares practical strategies and considerations for
audiologists when counseling families of newly identified children who
are deaf or hard of hearing.
3. Hearing Loss in Children http://www.cdc.gov/ncbddd/hearingloss/index.
html.
This comprehensive website developed by the CDC covers a variety of
topics for both professionals and families related to screening and
intervention, including research and family stories. Links are provided
to free, downloadable resources useful for counseling families of chil-
dren who are deaf or hard of hearing, including fact sheets, posters,
and brochures. Many resources are available in Spanish.
4. The “State” of Early Hearing Detection and Intervention in the United
States http://www.infanthearing.org/states/index.html.
This webpage from NCHAM links professionals to information about EHDI
programs in each state. It maintains important contact information,
as well as links to useful EHDI resources (both print and online) devel-
oped within each state.
5. Genetics Program: Gallaudet University http://www.gallaudet.edu/genet-
ics/about_us_-_services_and_research.html.
This webpage shares information for professionals about the genetics
program at Gallaudet University in Washington, DC. It includes links to
 St. John et al.  193

numerous national resources related to genetics and children who are

deaf or hard of hearing.
6. Medical Home Portal: http://www.medicalhomeportal.org/clinical-practice/
building-a-medical- home/care-coordination.
A comprehensive website for physicians and other professionals working
with children who have special needs and their families. It addresses
many important considerations related to coordinated care as well
as links to numerous resources on how to establish an effective
“Medical Home.”
7. Interactive Notebook for Families with a young child who is deaf or hard of
hearing http://www.infanthearing.org/states/documents/other/parent-
notebook.pdf.
A downloadable resource notebook developed collaboratively by profes-
sionals and parents. It provides information for families on a variety
of topics related to raising a child who is deaf or hard of hearing.
8. Infant
Hearing Guide http://www.infanthearing.org/slideshow/ihg/
index.html.
A family training CD developed with funding by the National Institute on
Deafness and other Communication Disorders (NIDCD) at the National
Institutes of Health. It covers three general topic areas: Diagnosis,
Taking Action, and Family Support. Each of these sections includes
videos and/or interactive multimedia activities to facilitate family
learning.
9. Video Overview of How Hearing Works:  Auditory Transduction http://
www.youtube.com/watch?v=46aNGGNPm7s.
This comprehensive video provides a 7-minute 3-D animation of a trip
through the ear. It is a useful tool for professionals when counsel-
ing families about the hearing mechanism. Professionals should be
aware that this video is not captioned, which means that it is not
accessible to deaf individuals.
10. Part C Eligibility Considerations for Infants and Toddler Who Are Deaf or
Hard of Hearing http://www.infanthearing.org/earlyintervention/part_c_
eligibility.pdf.
This document, developed by a committee convened by the IDEA Infant &
Toddler Coordinators Association and the National Center for Hearing
Assessment and Management, provides important information for
professional consideration when determining Part C eligibility. It
194  Getting Started

includes a comprehensive chart describing the relationship between

hearing levels and a child’s development.
11. National Center on Deaf-Blindness https://nationaldb.org/.
This comprehensive website provides practical information for both pro-
fessionals and families to increase awareness, knowledge, and skills
related to intervention for children who are deaf–blind. The website
includes links to an extensive library of publications, as well as other
initiatives from this Center.
12. Science of Learning Center on Visual Language and Visual Learning
(VL2) http://vl2.gallaudet.edu/.
VL2 has a variety of resources for educators and parents regarding
visual language that are based on relevant scholarship and make
recommendations for practice. The many resources available include
a Parent Information Package, a series of research briefs (some avail-
able in Spanish and Mandarin), American Sign Language assessment
tools, and ASL storybooks.

REFERENCES
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aaa_childhood-hearing-guidelines_2011.pdf.
American Academy of Pediatrics. (2014). Early hearing detection and
intervention (EHDI). Retrieved from http://www.aap.org/en-us/
a dvo c a c y - an d - p ol i c y / a ap - h e a lt h - i n it i at ive s / P E H DIC / Pa ge s /
Early-Hearing-Detection-and-Intervention.aspx.
American Speech-Language-Hearing Association. (2004). Guidelines for the
audiologic assessment of children from birth to 5 years of age. Retrieved from
http://www.asha.org/policy/.
American Speech-Language-Hearing Association. (2008). Guidelines for audi-
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Bailes, C.  N., Erting, C.  J., Erting, L.  C., & Thumann-Prezioso, C. (2009).
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Calderon, R., & Greenberg, T. (2011). Social and emotional development of
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cation (Vol. 1, 2nd ed.). Oxford, England: Oxford University Press.
Centers for Disease Control and Prevention. (2013). Summary of 2011
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Easterbrooks, S., & Baker, S. (2002). Language learning in children who are deaf
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Fitzpatrick, E., Angus, D., Durieux-Smith, A., Graham, I. D., & Coyle, D. (2008).
Parents’ needs following identification of childhood hearing loss. American
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Gallaudet Research Institute. (2010). Regional and national summary report of
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Geers, A.  E. (2006). Spoken language in children with cochlear implants. In
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Harris, M. (2010). Early communication in sign and speech. In M. Marschark &
P. E. Spencer (Eds.), Oxford handbook of deaf studies, language, and educa-
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Hintermair, M. (2000). Hearing impaired children with additional disabilities
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University of Education in Heidelberg. Exceptional Children, 66, 327–332.
IDEA Infant and Toddler Coordinators Association and National Center for
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Joint Committee on Infant Hearing. (2007). Year 2007 position state-
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Luterman, D. (2004). Counseling families of children with hearing loss and spe-
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Mayberry, R. I., & Eichen, E. B. (1991). The long-lasting advantage of learning
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7  Developmental Assessment
Amy Szarkowski and Nicole Hutchinson

Jessica Harper is a speech-language pathologist working in early inter-

vention providing family-centered care to young children and their
family members. The early intervention program in which Ms. Harper
works is moving to incorporate better assessment tools and procedures
in the developmental assessment process. The program currently uti-
lizes an interdisciplinary approach for the provision of early interven-
tion services and wants to extend this model to assessment practices.
The team will be working with Adam and his family. Adam is
a 16-month-old boy whose hearing levels are in the moderate to
severe range. His parents, who are both first-generation Brazilian-
Americans, are concerned about his delayed acquisition of motor
skills and his limited language skills. Adam’s parents have never
worked with early intervention professionals before and are unsure
what it means for Adam to be involved in a developmental assess-
ment. Ms. Harper and her team would like to facilitate a compre-
hensive and meaningful assessment so that they can better identify
needed services and closely monitor Adam’s progress. The team will

199
200  Developmental Assessment

also need to explain to Adam’s family what the process will entail and
how they can be involved.

GUIDING QUESTIONS

1. What does a comprehensive and meaningful assessment entail for an

infant or toddler who is deaf or hard of hearing?
2. What assessment strategies should be used?
3. Who should be involved in the assessment?
4. How can assessment information be used to guide the Individualized
Family Service Plan (IFSP) and to monitor the progress of an infant who is
deaf or hard of hearing?

COMPETENCY AREAS ADDRESSED IN THIS CHAPTER

1. Screening, Evaluation and Assessment: Interpretation of Hearing Screening

and Audiological Diagnostic Information; Ongoing Developmental
Assessment; and Use of Developmental Assessment Tools to Monitor
Progress
2. Factors Influencing Infant and Toddler Development
3. Collaboration and Interdisciplinary Models and Practices

INTRODUCTION

This chapter describes why and how to conduct developmental assessments

of infants and toddlers who are deaf or hard of hearing. It will empha-
size best practices, as identified in the professional literature and endorsed
by relevant bodies that govern, inform, and/or provide leadership in this
area. For the general early intervention population, best practices have
been defined by organizations in the United States such as the National
Center for Infants, Toddlers, and Families (Zero to Three); the Council
for Exceptional Children (CEC)—in particular, the Division for Early
 Szarkowski and Hutchinson  201

Childhood (DEC); the Early Childhood Technical Assistance Center

(ECTA) within the Office of Special Education Programs in the United
States Department of Education; the National Association for the Education
of Young Children (NAEYC); the Early Head Start National Resource
Center (EHSNRC); and the National Scientific Council on the Developing
Child (NSCDC).
Assessment policies for all children from birth to 3  years of age,
including those who are deaf or hard of hearing, are guided by Part C
of the Individuals with Disabilities Education Improvement Act (IDEA,
2004). The Joint Committee on Infant Hearing (JCIH) has also developed
principles and guidelines for the assessment of infants and toddlers who
are deaf or hard of hearing [Joint Committee on Infant Hearing (JCIH),
2007,  2013] (see Chapter  4, Legislation, Policies, and Roles of Research
in Shaping Early Intervention, for more information on the JCIH).
Additionally, a recent international document on best practices for chil-
dren who are deaf or hard of hearing endorses these principles and offers
useful suggestions for conducting developmental assessments (Moeller,
Carr, Seaver, Stredler-Brown, & Holzinger, 2013).
Assessment protocols have changed over time and are likely to con-
tinue to evolve as our understanding of the developmental process of
infants and toddlers continues to grow. This chapter will not focus on
particular assessment tools; it will instead explore the principles of devel-
opmental assessment, the approaches used to assess infants and toddlers,
and how assessment can be used to inform programming. It will also
address the importance of having skilled professionals on the assessment
team and how to share assessment results with families. By striving to
incorporate the best of what we know with regard to the assessment of
young children, Ms. Harper can be sure that she is honoring the princi-
ples of providing family-centered care highlighted throughout this book.

THE IMPACT OF BEING DEAF ON DEVELOPMENT

After identification of his hearing status, Adam’s family is eager to learn

more about how it might affect his learning as he grows. Ms. Harper
202  Developmental Assessment

explains that the development of children who are deaf or hard of hear-
ing, as with all children, is influenced by early experiences, particularly
those that occur between birth and 3  years of age. Early experiences,
including the exposure the infant or toddler has to social and learning
opportunities, lay the foundation for a child’s future by literally altering
the architecture of the brain and influencing how a child learns, behaves,
and interacts with others [National Scientific Council on the Developing
Child (NSCDC), 2007].
Ms. Harper also explains to Adam’s family that hearing status, in and
of itself, does not necessarily have a negative impact on a child’s develop-
ment. Barring any complicating factors (such as additional disabilities or
cognitive limitations), when early identification and early intervention are
in place, expectations for cognitive and linguistic development for deaf or
hard-of-hearing children need not differ from that of their peers with typi-
cal hearing (Marschark & Hauser, 2011; Thagard, Hilsmier, & Easterbrooks,
2011; Yoshinaga-Itano, Baca, & Sedey, 2010). This requires, however, that
the child be afforded consistent access to communication, whether through
continuous auditory access (with the assistance of hearing aids or cochlear
implants) or through visual access (such as when infants and toddlers are
exposed to consistent use of a signed language). Ms. Harper explained that
although Adam had not previously received early intervention, there is
strong evidence that families who are highly involved in their child’s early
intervention services can make a positive difference in their development
over time (Calderon, 2000; Moeller, 2000).
Because Adam has developed only a few spoken words, his grand-
parents have expressed their concern that Adam may be cognitively
challenged. Back in Brazil, one of Adam’s cousins was found to have
significant delays and was sent away to a special school. Ms. Harper
explained that many deaf or hard-of-hearing children are at greater risk
for delays or interruptions in their communication and language devel-
opment as a result of decreased access to their environment (Marschark
& Hauser, 2011). Children with typical hearing inadvertently acquire
information by overhearing others, a phenomenon known as incidental
learning (Marschark & Hauser, 2008, 2011). For children who are deaf or
hard of hearing and who do not have full access to language from their
 Szarkowski and Hutchinson  203

caregivers, incidental learning tends to be reduced. These children also

have less access to communicative interactions with others (Easterbrooks
& Baker, 2002). Without early intervention and appropriate supports,
decreased access to information and communication opportunities can
have a negative influence on a child’s cognitive, linguistic, and social
development (Marschark & Hauser, 2011; Moeller, 2000; NSCDC, 2007).
This information increases the need for Adam’s family to establish effec-
tive communication as soon as possible.

DEFINING DEVELOPMENTAL ASSESSMENT

In early intervention terminology, the term evaluation is typically used to

describe the process by which a determination is made regarding eligibil-
ity for services [Early Head Start National Resource Center (EHSNRC),
2013; Zero to Three,  2014]. This chapter will focus on developmental
assessment rather than evaluation. “Assessment can be broadly defined as
an ongoing and comprehensive process of collecting information about
children and families for the purpose of making informed instructional
decisions” (Notari-Syverson & Losardo, 2008, p.  161). Developmental
assessment refers to the collective activities that are involved in gath-
ering information about a child’s developmental strengths and needs,
functional capacities, as well as the resources and priorities of the family
(Bruder, 2010; EHSNRC, 2013; Guralnick, 2005; Zero to Three, 2014).
Developmental assessments with deaf or hard-of-hearing children
should be socially, culturally, and linguistically responsive and should
show respect for communication opportunities and approaches (JCIH,
2007, 2013). This would include equal opportunities for infants and tod-
dlers using a signed language or a spoken language to demonstrate their
language and communication skills. To address different hearing lev-
els, professionals may need to adjust their approaches. Examples could
include repeating information if an infant or child seems to have not
heard or misheard something, using a personal FM system, or being sure
to obtain the child’s attention before presenting information in a signed
language. It might also involve the inclusion of professionals who are deaf
204  Developmental Assessment

or hard of hearing as part of the assessment team. Appropriate devel-

opmental assessment can inform professionals and the family about the
most effective and efficacious communication modalities for the child
(JCIH, 2013; Moeller et al., 2013) as well as the services needed to promote
communication development.

PRINCIPLES OF DEVELOPMENTAL ASSESSMENT

Family Involvement
Developmental assessment should utilize family-centered principles; fami-
lies are an integral part of the process (Division for Early Childhood, 2014;
Zero to Three, 2014). The information that families share will guide the
assessment in many ways (Brotherson et al., 2010). Families are encouraged
to provide information about their child’s abilities and share any concerns
they may have about their child’s development. A child’s capabilities must
be understood in the context of the child’s family and culture (EHSNRC,
2013; Guralnick, 2005; Hanson & Lynch, 2013). Ms. Harper and her team
will need to consider the cultural perspectives of Adam’s family, their views
on development, and what it means for Adam to be hard of hearing.
The assessment process should be adjusted to meet the needs of the
family (Neisworth & Bagnato, 2004). Consideration should be given to
the time and location of the assessment as well as to the composition of
the team members. Ms. Harper will need to consider the cultural and
linguistic preferences of Adam’s family and, together with the family,
consider how language interpreters can ensure that the information
shared among the family members and professionals is accurate and is
understood by all parties (Hanson & Lynch, 2013). Attending to the fam-
ily’s needs is likely to enhance the collaboration between the profession-
als and the family and increase the validity of the information collected.

Family Assessment
Part C of the Individuals with Disabilities Education Act (2004)
§303.321(c)(2) requires that a family-directed assessment be conducted
to “. . . identify the families’ resources, priorities and concerns and the
 Szarkowski and Hutchinson  205

supports and services necessary to enhance the family’s capacity to meet

the developmental needs of the family’s infant or toddler with a disabil-
ity”. The family assessment should be conducted by qualified personnel
and is likely to include interview(s) as well as the use of assessment tools.
The family assessment must be voluntary on the part of the family, based
on the information obtained through the interview or other assessments,
and include a description of the family’s resources, priorities, and con-
cerns related to supporting their child’s development. For Adam’s fam-
ily, one identified area of need is the ability to understand the results of
his audiogram. Some family members have expressed confusion because
it appears that Adam is sometimes able to hear, and they would like to
understand what Adam can and cannot hear. It is a priority for the family
to learn more about Adam’s audiological status in order to better meet
his needs.

Natural Environments
Assessments of infants and toddlers should consider the child’s natural
environments. These are environments that are familiar to the child and
include the adults with whom the child interacts frequently. Natural envi-
ronments provide opportunities for the child to demonstrate how he or
she functions in real-life contexts and in places in which he or she is likely
to feel secure and comfortable (EHSNRC, 2013; Zero to Three, 2014). For
Adam, these could include his home, the home of his grandparents, his
daycare, or the park in which he frequently plays.

Authentic Assessment
Developmental assessments for young children should utilize the prin-
ciples of authentic assessment in order to obtain a realistic picture of
a child’s abilities (Losardo & Notari-Syverson, 2011). Authentic assess-
ment uses observation of a child’s behaviors and functional skills in
the child’s natural environments and during daily routines in order to
capture a child’s abilities in real-life contexts. (Bagnato, Neisworth, &
Pretti-Fronteczak, 2010). By helping to identify an infant or toddler’s
206  Developmental Assessment

strengths and needs, authentic assessments yield information that can

help to identify appropriate, functional goals.

The Whole Child Approach

When planning Adam’s developmental assessment, Ms. Harper and her
team need to consider his abilities in many domains. Typically, the domains
that are assessed include: (1) cognitive; (2) communicative/linguistic; (3)
motoric; (4) social–emotional; and (5) adaptive functioning/self-help skills.
Examining abilities in each domain will help the professionals and family
members better understand areas of strength and vulnerability.
Although domain-specific assessment is important, so too is the con-
sideration of the whole child. An infant’s or toddler’s development in one
domain can limit or facilitate development in other domains (Center on
the Developing Child, 2007; Kostelnik, Soderman, & Whiren, 2007). For
example, a toddler learning to walk will have greater opportunities to
explore the world, which will influence the child’s cognitive development.
Although concerns for Adam’s development are now focused on his lan-
guage and motor development, Ms. Harper and the interdisciplinary team
will also be concerned about Adam’s overall development and well-being.

Team-Based Assessment
Best practices also suggest team-based approaches to assessment (Bruder,
2010; DEC, 2014). Ms. Harper has determined that she would like to
know more about how early intervention teams work together. Rather
than assume that a group of professionals will just simply “get along,” she
has opted to read about how teams have defined the roles of their mem-
bers. She was fascinated by what she learned about the many ways in
which team members can work collaboratively.
Early intervention programs that use team-based services show objec-
tive benefits for the children and families with whom they work (Kassini,
2008; King et al., 2009). A number of terms are used to describe how pro-
fessionals can work together to conduct an assessment. Table 7.1 describes
three types of professional teaming: multidisciplinary, interdisciplinary,
and transdisciplinary.
 Szarkowski and Hutchinson  207

Table 7.1  Professional Teaming Models for Developmental Assessment

Multidisciplinary Professionals from various disciplines are involved in

the assessment process; however, each professional
is responsible for the assessment only in his or her
own professional domain. There is not a great deal
of interaction among the professionals; rather, each
person performs a piece of the evaluation and offers
insights to the group based on his or her area of
expertise (Bruder, 2010).
Interdisciplinary Professionals from various disciplines coordinate
efforts and work collaboratively to perform the
assessment. The framework for the assessment
remains profession specific, yet there is greater
interaction among the team (King et al., 2009).
Transdisciplinary Professional roles are shared across disciplinary
boundaries so that communication, interaction,
and cooperation are maximized. Team members
make use of their own expertise while assimilating
the knowledge and expertise of other team
members (King et al., 2009).

Teams work best when professionals demonstrate honesty and openness,

share information and responsibility, prove themselves to be trustworthy
and consistent, show empathy, and work collaboratively with families (Park
& Turnbull, 2003). Team performance is also improved when professionals
understand the role of each team member, possess good communication
skills, have time available to collaborate, share clear goals and objectives,
and have the resources needed to meet the needs of the child and his or her
family members (King et al., 2009). The Joint Committee on Infant Hearing
(2013) recommends that early intervention professionals understand and
participate in assessment procedures using these team-based frameworks.

SKILLED PROFESSIONALS

Early intervention specialists must possess interpersonal skills that reflect

their respect, responsiveness, and support to families (Gilkerson & Taylor
208  Developmental Assessment

Ritzler, 2014; see Chapter  1, What Every Early Intervention Professional

Should Know). Effective professionals must be able to listen carefully,
demonstrate concern and empathy, and respond thoughtfully. They must
be able to understand the child and make themselves understood by
the child and family. Additionally, professionals should be knowledge-
able about child development as well as family functioning and should
possess strong collaborative consultative skills (Rapport, McWilliam, &
Smith, 2004).
IDEA Part C requires that personnel conducting evaluations and
assessments be qualified in the area(s) in which they are conducting
evaluations or assessments [Individuals with Disabilities Education Act
(IDEA), 2011 §303.31]. Ms. Harper is aware that the professionals involved
in Adam’s assessment will need to accurately describe his social skills,
attention, communicative competence, learning style, and behaviors
(Rowland, 2009). Indicating which tasks require support and which can
be done independently provides important information. Does the child
explore new objects or appear disinterested? Does the child show a pref-
erence for certain people or objects? What does it take to gain or regain
the child’s attention? Answers to questions such as these can be quite use-
ful in generating a profile of the child’s abilities.

Role of Professionals with Specific Areas of Expertise

For children with specific developmental needs, such as problems with
movement, learning challenges, low vision, or who are deaf or hard of
hearing, the team should be composed of individuals with particular
expertise (DEC, 2014). Making accommodations to the assessments may
be necessary, and those with expertise in specific areas are more likely to
be knowledgeable about the types of assessments, alterations, and adjust-
ments that can be made while maintaining the integrity of the assessment
process. For example, if the child being assessed uses assistive technology,
such as a picture communication system, the assessment team should
include a professional who is both knowledgeable about the type of assis-
tive technology used and comfortable making adaptations to the assess-
ment tools used in order to adequately evaluate the child’s functioning.
 Szarkowski and Hutchinson  209

Professionals who have expertise with young children who are deaf
or hard of hearing as well as those with other disabilities are impor-
tant members of the assessment team (JCIH, 2013; Moeller et al., 2013).
Approximately 40% of infants and toddlers who are deaf or hard of hear-
ing have an “educationally relevant additional need” (Gallaudet Research
Institute, 2009; Picard, 2004). The assessment team should include pro-
fessionals with specialized training from diverse disciplines in order
to most effectively serve this unique population of children (Orelove,
Sobsey, & Silberman, 2004).
Historically, the abilities of deaf or hard-of-hearing children have fre-
quently been underestimated as a result of (1) insufficient training and
knowledge on the part of the professional and (2)  inappropriate inter-
pretation of assessment results (Wood & Dockrell, 2010). Professionals
working with children who are deaf or hard of hearing require train-
ing and knowledge regarding infant development and the implications
of being deaf or hard of hearing on communication and language skills.
See Table 7.2 for the knowledge and skills shared by early intervention

Table 7.2  Knowledge and Skills of Early Intervention Specialists

Related to Assessment

1. Deep knowledge of infant and toddler development and the implications

of being deaf or hard of hearing including being deaf or hard of hearing
with developmental concerns or disabilities
2. Strong appreciation of the factors that can significantly influence
development, including cultural factors
3. Excellent observational skills
4. The ability to aptly describe what they see and put it into an appropriate
context
5. The capacity to succinctly convey their findings, with compassion
6. Understanding of family systems and sensitivity in working with families
7. The ability to understand the child’s communicative behaviors and be
understood by the child
8. Knowledge of and familiarity with specific assessment tools, as well as the
ability to select appropriate assessments for each child
210  Developmental Assessment

professionals who can effectively assess infants and toddlers who are deaf
or hard of hearing.

Inclusion of Deaf Adults in the Assessment Process

One of the professionals who will join Adam’s assessment team is a physi-
cal therapist who works primarily with deaf and hard-of-hearing chil-
dren and is fluent in American Sign Language as well as spoken English.
The other is a teacher of the deaf who is deaf herself, and is able to offer
insight regarding Adam’s communication abilities and access to informa-
tion. She may be able to assist the team in interpreting Adam’s nonver-
bal communication and other visual communication that might not be
evident to hearing professionals. (See Chapter 5, Collaboration with Deaf
and Hard-of-Hearing Communities.)

ASSESSMENT APPROACHES

Developmental assessment information can be collected using formal

and informal assessments including: (1) norm-referenced assessments;
(2) criterion-referenced assessments; (3) observation checklists and
questionnaires; (4) portfolios; (5) functional behavioral assessments;
and (6) play-based assessment strategies (Bruder, 2010; EHSNRC, 2013;
Guralnick, 2005).

Norm-Referenced Assessments
Norm-referenced assessment instruments measure a child’s abili-
ties relative to the abilities of other children of the same chronologi-
cal age. Incorporating norm-referenced assessment protocols in the
developmental assessment allows for precise measurement of progress
(Stredler-Brown, 2010), as long as the tools and assessment approaches
used are appropriate for the child. When cognition is within normal
limits, norm-referenced assessments can track the progress made in
the development of particular skills or abilities and can compare this
with expectations for same-aged peers. When cognitive limitations are
 Szarkowski and Hutchinson  211

present, expectations for progress should, instead, be based on a child’s

cognitive age (Bagnato, Neisworth, & Pretti-Frotczak, 2010). Areas of
strength and vulnerability can be determined based on comparisons of
the child’s current functioning to documented norms (EHSNRC, 2013;
Stredler-Brown, 2010). This information can inform the types of services
that are appropriate to promote the child’s growth (DEC, 2014; Zero to
Three, 2014).
Ms. Harper knows that using standardized measures can help profes-
sionals identify present levels of performance and results can be quan-
tified. By doing so, she can aid the family in understanding Adam’s
strengths and areas of vulnerability as they relate to age-based expecta-
tions. Analysis of a child’s performance on a standard measure (such as
identifying which tasks a child can do readily, which types of tasks can
be completed but are challenging for the child, and which tasks require
skills that are beyond those that the child possesses at a given time) can
yield good information and serve as an important tool for the team in
identifying intervention goals. Standardized assessments, however, are
only a snapshot of the child’s abilities demonstrated at a particular time
and place. The results are only as valid as the effectiveness of the profes-
sional administering the assessment and the child’s state. For example, at
times young children are too sleepy, hungry, upset, or ill to demonstrate
the skills or abilities that they possess. It is also important to note that the
availability of standardized measures that are appropriate for use with
young children who are deaf or hard of hearing is quite limited.

Criterion-Referenced Assessments
Developmental assessment should also include assessment tools that help
families and professionals document a child’s growth over time, such as
criterion-referenced assessments. In contrast to norm-referenced assess-
ments, criterion-referenced assessments do not compare a child’s scores
with that of other children of the same age. Instead, they monitor a child’s
development compared to established benchmarks such as those found in
early learning standards and early intervention program curricula. These
assessments can provide a picture of a child’s developmental progress
212  Developmental Assessment

over time (DEC, 2014; Hafer & Stredler-Brown, 2003). Ms. Harper might
use a criterion-referenced assessment, for example, to illustrate Adams
progress toward a specific motor milestone such as walking indepen-
dently. A criterion-referenced assessment could be used to show Adam’s
progress, even if incremental, toward accomplishing this milestone.

Observation Checklists and Questionnaires

One method for gathering authentic assessment information is through
the use of questionnaires and checklists. Assessments that involve fam-
ily input provide authentic information about the child (Bagnato, 2005;
Bagnato et al., 2010). Family members may be asked to independently
complete questionnaires about the infant or toddler’s functioning.
Alternatively, information may be obtained through an interview for-
mat with the early intervention professional asking family members and
other primary caregivers about the child’s skills or behaviors. For exam-
ple, the Infant Toddler Meaningful Auditory Integration Scale (ITMAIS)
(2008) is a parent questionnaire designed to assess a deaf or hard-of-
hearing child’s responses to sound in their everyday environment, and
the MacArthur Bates Communicative Development Inventory (2013) is
a checklist completed by the parent or caregiver to identify the words in
their child’s lexicon.
Questionnaires and checklists tend to provide information about an
infant’s or toddler’s functioning that may not be obtained through other
assessment measures. Though some professionals may question the accu-
racy of parent-based assessments, researchers have shown that parents
are reasonably good reporters of their child’s skills (Feldman et al., 2005;
Miller, Sedey, & Miolo, 1995), and the use of parent-completed check-
lists and interview questionnaires is a valuable way to encourage family
involvement in the assessment process (Hafer & Stredler-Brown, 2003).

Portfolio Assessment
Portfolio assessment is a method for obtaining a comprehensive and
authentic picture of a child’s abilities across multiple settings and envi-
ronments (Hafer & Stredler-Brown, 2003; Losardo & Notari-Syverson,
 Szarkowski and Hutchinson  213

2011). There is no single accepted way to compile a portfolio. Rather, it

is a flexible, individualized method for collecting and storing informa-
tion about the child’s progress across various domains (LaBoskey, 2000).
A portfolio assessment consists of a collection of the child’s work (e.g.,
photos, videos, artwork), anecdotal observations made by the parents
and caregivers, as well as early intervention specialists who work with
the child (Losardo & Notari-Syverson, 2011). The content of the portfolio
is determined by the specific goals identified by the family and profes-
sionals on the early intervention team, with items being added frequently
(Puckett & Black, 2008). Adam’s family, for example, is video recording
his interactions with cousins. Although the communicative exchanges
are in Portuguese, the videos provide real-life examples of how Adam
makes his needs known and interacts with other young children.
Portfolios can be a valuable tool for supplementing and supporting
assessment findings obtained through other measures (Puckett & Black,
2008). They can be used to monitor a child’s progress after the initial
developmental assessment has been conducted. Portfolios tend to be
sensitive to incremental progress over time (Losardo & Notari-Syverson,
2011), and are particularly useful in tracking progress toward specific
goals. Portfolio assessments can also be used to track progress with chil-
dren for whom traditional assessments may not yield meaningful results
(Jarrett, Browne, & Wallin, 2006).

Functional Behavioral Assessments

Functional behavioral assessments can provide information about how
Adam functions, how he interacts with others, and how he responds
to various stimuli in the environment (Sugai, Lewis-Palmer, & Hagan-
Burke, 2000). In utilizing a functional approach to behavioral assess-
ment, professionals and families work collaboratively to describe a child’s
behaviors, including strengths and areas of concern. The professionals
and the family can then examine the context in which particular behav-
iors occur in order to identify the purpose of a child’s behavior and better
predict when these behaviors might happen (Drecktrah & Marchel, 2014).
Functional behavior analysis is a problem-solving strategy that involves
identifying a problem, collecting and analyzing information about the
214  Developmental Assessment

problem, planning an intervention(s) to address the problem, and then

monitoring and evaluating the outcome (Gresham, Watson, & Skinner,
2001; Sugai et al., 2000).

Play-Based Assessment
Many child development experts recommend the use of play-based
assessments as a complement to standardized measures (Kelly-Vance &
Ryalls, 2004; Lifter, Foster-Sanda, Arzamarski, Briesch, & McClure, 2011;
Lifter, Mason, & Barton, 2011). Lifter and colleagues (2011) described play
as the “demonstration of what children know” and a “demonstration of
what they are currently thinking about” (p. 228). Linder (2008) proposes
transdisciplinary play-based assessment to gather information across a
child’s domains of functioning.
Play-based assessment is used to examine a child’s play skills. Play
skills, in turn, can be a valid measure of cognition and other skills, such
as social problem solving and language abilities (Lifter et al., 2011; Linder,
2008). Play-based assessment tends to be authentic in that a child’s per-
formance reflects skills that are not represented on standardized measures
(Kelly-Vance & Ryalls, 2004; Linder, 2008). During the administration of
more formal measures, Adam was rather shy; yet while he was playing,
he was more interactive, engaging and communicative with members of
the assessment team. Assessment through play also tends to be culturally
sensitive, as it often occurs in a natural context, such as the child’s home,
and includes familiar people and objects (Lifter et al., 2011).

USING ASSESSMENT DATA FOR PROGRESS MONITORING

Assessments are conducted for a variety of reasons: (1) to identify a child’s

present level of performance and track progress; (2) to inform early inter-
vention programming; (3) to monitor family outcomes; (4) to assess pro-
gram outcomes; and (5) to monitor program accountability. Progress
monitoring allows professionals, in tandem with the family, to reflect on
the strategies that are shown to be effective, modify interventions accord-
ingly, and better promote desired or optimal outcomes (EHSNRC, 2013;
 Szarkowski and Hutchinson  215

Moeller et al., 2013). Information gathered through progress monitoring

might include the quality and quantity of family and child services pro-
vided, the learning strategies employed, as well as behavioral manage-
ment supports used (Bruder, 2010).

Monitoring a Child’s Progress

IDEA, the Individuals with Disabilities Education Act (2004), recom-
mends comprehensive, interdisciplinary assessment at specific intervals––
every 6 months for the child’s first 3 years of life. Yet in the life of a young
child, 6 months is a long time to “wait and see” if a child is making progress.
Systematically and continuously documenting an infant or toddler’s prog-
ress through regular and ongoing assessment practices is vitally important
to ensure that the intervention is effective and that the child is making the
expected progress (JCIH, 2013; Moeller et al., 2013; Stredler-Brown, 2010).
Adam’s family was relieved to learn that the assessment process is on-going
in nature. They were pleased that Adam’s progress would be documented
and that services could be adjusted as needed to help the family support
Adam in meeting specific goals.

Monitoring an Early Intervention Plan

Progress monitoring allows professionals to utilize assessment data to
guide, adjust, or alter goals (Niparko et al., 2010; Stredler-Brown, 2010).
It can promote the ability of professionals to reflect on their own prac-
tices and to try new techniques. Progress monitoring can also enhance
problem solving in situations that are particularly challenging (Moeller
et al., 2013). Progress monitoring in working with children who are deaf
or hard of hearing can further professionals’ understanding of “what
works” to support young children who are deaf or hard of hearing (Hafer
& Stredler-Brown, 2003; Yoshinaga-Itano, 2003).

Monitoring Family Outcomes

Progress monitoring provides a means for early intervention special-
ists and family members to assess progress toward goals established
216  Developmental Assessment

by the family (Moeller et al., 2013; Stredler-Brown, 2010). Typical fam-

ily outcomes include identifying resources, accessing new information
(often related to a child’s condition), acquiring techniques to foster the
child’s development of particular skills, and implementing strategies
in the home environment in an effort to optimize the child’s growth
(ECTA, 2015; EHSNRC, 2013).

Monitoring Program Outcomes

Progress monitoring can also introduce accountability into a pro-
gram’s infrastructure. Using the same assessment protocols with all
children enrolled in a program provides information about the overall
effectiveness of the program (Stredler-Brown, 2004, 2010). When the
same data on many children are analyzed, program administrators
can reflect on the efficacy of program services (ECTA, 2015; Stredler-
Brown, 2004, 2010). This can have wide-reaching implications for
program planning and management. These data can also inform pro-
gram administrators about training needs of the early intervention
team.

Monitoring Early Intervention Program Accountability

In the United States, the Office of Special Education Programs encour-
ages states to report child and family outcomes in an effort to track and
monitor the effectiveness of early intervention at the national level (ECTA,
2015). States are now asked to report the progress made by children in
the following areas: (1) positive social–emotional skills (including social
relationships); (2) acquisition and use of knowledge and skills (including
early language and communication); and (3) use of appropriate behaviors
to meet their needs (ECTA, 2015). Early intervention programs are also
encouraged to report how the early intervention services have helped
families make progress in the following areas: (1) knowing their rights;
(2) effectively communicating their children’s needs; and (3) helping their
children develop and learn. Studies of models of early intervention have
found that teams who implement rigorous assessment, monitor the quality
of the services provided, and provide training and technical assistance to
 Szarkowski and Hutchinson  217

providers are generally more successful (National Scientific Council on the

Developing Child, 2007).

SPECIAL CONSIDERATIONS FOR ASSESSING INFANTS AND

TODDLERS WHO ARE DEAF OR HARD OF HEARING

The specific methods employed will depend upon the particular needs of
a given child in the context of that child’s family. There is no perfect, one-
size-fits-all assessment protocol. Flexibility in conducting assessments is
paramount. Whereas real-world demands may dictate some aspects of
the assessment, professionals should tailor the assessment to ensure that
the information obtained paints an accurate picture of the skills of the
child and the strengths and priorities of the family. Ms. Harper wonders
about the best way to conduct an assessment that will be useful and infor-
mative for Adam’s family.
It is important for the team to know how to design, alter, or sup-
plement an assessment protocol in light of the child’s hearing abil-
ity or developmental delays or disabilities. For example, although a
linguistically based measure of cognitive ability may be appropriate
to administer to a child who is deaf or hard of hearing (Marschark
& Hauser, 2008, 2011), professionals need to be cognizant of how a
child’s hearing abilities may influence performance. For example, ask-
ing a child to place the blue blocks inside the red cup may actually
be assessing factors other than cognition (or knowledge of colors),
such as whether: (1) the child understands the directions; (2) the child
is able to perform the task; (3) the child hears and understands the
instructions if presented through spoken language, or sees and under-
stands the instructions if presented through a signed language; or (4)
the child has had experience with the materials (e.g., he has played
with blocks and knows what they are). This becomes particularly rel-
evant when using assessment materials with children who may not
have been exposed to “everyday objects” readily found in the domi-
nant culture.
During the assessment process, Ms. Harper may find that accom-
modations to the standard administration of a test protocol are needed.
218  Developmental Assessment

For example, if she determines that Adam’s language is delayed, she

may choose to incorporate nonverbal or less linguistically challenging
materials during evaluation in order to appropriately ascertain his skills
in other areas, such as his problem-solving abilities. According to the
Division for Early Childhood (2014), common modifications in assess-
ment include: (1) using alternative measures; (2) allowing the child
flexibility in how a skill is performed or demonstrated; (3) measuring
prerequisite or underlying skills; and (4) limiting the number of items
administered. When modifications are made in the administration of
assessments, these need to be noted, as they will influence the interpre-
tation of the results.

Assessment of Communication and Language

Understanding how a child communicates and uses language is a crucial
aspect of assessment (Yoshinaga-Itano, 2003). Communication between
infants and their caregivers is essential for their relationship and can be
assessed by examining how they share attention, demonstrate turn-taking,
and respond to each other (Brazelton & Nugent, 2011). In older babies
and toddlers, assessment often focuses on receptive and expressive lan-
guage skills, and measures the words or signs that the child understands
and uses. It was helpful for the team to discuss the difference between
communication and language with Adam’s family. With this knowledge,
family members have begun to notice the many ways in which Adam
is communicating his needs and desires to them, despite his apparently
reduced repertoire of spoken words.
Many infants and toddlers who are deaf or hard of hearing ben-
efit from visual access to information, whether through the use of a
formal signed language, such as American Sign Language, through
the incorporation of conceptually accurate signs in conjunction with
spoken language, or through the use of other visual communication.
Assessment of language and communication abilities should address a
variety of areas, including: (1) listening skills; (2) adult–child commu-
nication; (3) vocabulary; (4) pragmatics; and (5) spoken and/or signed
language skills.
 Szarkowski and Hutchinson  219

Implications of Communication and Language on Functioning

across Domains
Language development has far reaching implications for the overall func-
tioning of the child. The development of social–emotional skills is signifi-
cantly correlated with language development (Yoshinaga-Itano, 2003), as
is development of cognition (Marschark, 2007). As an infant grows into
a toddler, the ability of the child and family to share ideas, express needs,
and describe internal states by having a shared means by which to com-
municate is important in fostering positive familial relationships (Barker
et al., 2009).

SELECTION OF ASSESSMENT MATERIALS

Bagnato and colleagues (2010, pp. 23–32) suggest eight standards to

consider when selecting assessments that can help to ensure develop-
mentally appropriate assessment. The first, acceptability, suggests that
skills being assessed are considered important and that improvements
in child competence are evident to the family. The materials should yield
authentic information that provides a real-life picture of the child’s skills
at a given time, gathered collaboratively by the professionals and family
members. There should be some evidence of appropriateness for each of
the measures used. For example, some instruments are widely regarded
as good tools, or “gold standards” for assessing particular skills, yet they
may not be the best choice for infants and toddlers with different hear-
ing levels; if studies have been conducted and have documented that
use of those measures is appropriate with infants and toddlers who are
deaf or hard of hearing, then professionals can be more confident about
the selection of that measure for assessment. Emphasizing that multiple
factors influence how an infant or toddler demonstrates his or her skills,
information should be gathered across several setting, occasions, and
methods. Assessment items should be sensitive enough to detect even
small changes in a child’s functioning. Measures should be universal,
in that they can be adapted to infants and toddlers with a wide range of
220  Developmental Assessment

needs or challenges. Finally, assessments must have utility—they need to

be useful and helpful.
Documents issued by the National Association of State Directors of
Special Education (2014) and the Clerc Center at Gallaudet University
(2013) offer information about particular instruments that can be used to
assess the skills of deaf or hard-of-hearing infants and toddlers. (See the
Recommended Resources at the end of this chapter.)

USABILITY OF ASSESSMENT RESULTS

Professionals should be mindful of the numerous factors that can influ-

ence the assessment process and the usability of the results. These factors
may include (1) the child’s disposition; (2) the environment; (3) the level
of involvement of the family; and (4) the caregiver’s report of the child’s
functioning. For example, during the formal evaluation of his gross motor
skills, it was important to select tasks that challenged Adam, in order to
show his optimal abilities, yet were not too difficult, so as not to frustrate
him. Adam became highly frustrated when asked to perform motor tasks
that were challenging for him. Often, providing multiple opportunities to
observe the child that include different settings or times during the day will
elicit targeted behaviors. Environmental disruptions may also interfere
with the assessment process; auditory and visual distractions may impact
the child’s performance. For infants or toddlers who use assistive listening
technologies, professionals need to ensure that the technologies are func-
tioning optimally and that background noise is controlled. For children
who communicate using a signed language, factors such as distance and
lighting may impact the child’s performance. When sharing assessment
results, professionals should indicate the extent to which the findings are
believed to be accurate and representative of the child’s abilities.

PROVIDING FEEDBACK TO FAMILIES

Ms. Harper wants Adam’s family members to be comfortable as they

discuss the results of the developmental assessment. She and her team
 Szarkowski and Hutchinson  221

consider how they will deliver the information, knowing that each fam-
ily member may respond differently. Adam’s mother tends to want “the
facts”; Adam’s father is less interested in details and tends to “focus on the
big picture.” The team must determine how to share the assessment find-
ings, offer their professional recommendations, and solicit input from
family members, while respecting each family member’s goals. The team
will include a Portuguese/English interpreter in the feedback session to
facilitate communication.
Ms. Harper is particularly interested in how the family would like to
receive the information. What medium is best for them (e.g., a written
outline, a visual graphic of the child’s results, a chart listing the child’s
scores)? Ms. Harper believes that it may be helpful if the team prepared
a summary of the results of the assessment in advance of the feedback
meeting with the family as well as some concrete recommendations to
share with the family during the meeting. She wonders if this might help
prompt a positive exchange of ideas about how the information they have
obtained can inform the services provided.

Strategies for Framing Assessment Results

The discussion should begin by focusing on what Adam is able to do, includ-
ing his strengths and abilities. Presenting findings in this way highlights
skills rather than deficits. Professionals can remind families that assessment
findings are not necessarily predictive. A comprehensive assessment will
gather data from various sources and across different contexts, yet it still
captures a child’s skills within a specific time frame. Professionals should
be careful to avoid definitive statements about a child’s future abilities; after
all, the intention of early intervention is to improve those outcomes.

Begin with the Family
Encourage family members to describe what they have observed and what
they know about their child’s abilities in different areas. Before offering
any results, ask family members about the questions they have pertaining
to the assessment. The perceptions of the family members and their ques-
tions can guide the feedback session, help professionals to gain a sense
222  Developmental Assessment

of what the family members have understood about the assessment, and
correct any misinterpretations (Postal & Armstrong, 2013).

To Number or Not to Number

Data derived from assessments usually yield numerical results.
Professionals can report a child’s abilities based on the percentage of
same-aged children who can perform a task or the age at which mastery
of a particular skill is expected, for example. This can help families know
where their child stands with respect to developmental expectations and
can provide the “evidence” that many families seek. This type of informa-
tion may also be necessary to justify services.
Some family members, however, prefer descriptions of the child’s skills
rather than numerical scores. When reporting in descriptive terms, profes-
sionals may use visuals, such as a graph that can show which skills are at
expectation for chronological age or developmental age (the latter is espe-
cially useful for children with cognitive limitations). A graph can help some
family members to understand the child’s overall developmental profile.

Determining How Much Is Enough

Some family members want to know the “big picture.” Others may want
domain-specific reports. Feedback can occur over time. Some family
members will be able to digest only a portion of the information and
may need additional sessions for feedback. Sometimes it is appropriate to
appoint one professional to deliver the results.

Individualizing Feedback
The professional can use the family’s own stories to personalize the feed-
back. When feedback to tailored to the family, they are better able to
understand and accept it (Postal & Armstrong, 2013). For example, Ms.
Harper may state, “Do you remember when you told me about the diffi-
culties Adam has in walking up stairs? You mentioned that it was confus-
ing, because he is a master at using a spoon, so it seems his motor skills
are OK. That is a good example of what I mean by gross motor versus fine
motor skills.”
 Szarkowski and Hutchinson  223

Adam’s family members, having been highly involved throughout the

assessment process, were not surprised when the results were shared with
them. They appreciated the fact that the intervention team described the
purposes of various aspects of the developmental assessment as it pro-
ceeded. They were particularly grateful that Ms. Harper and her team had
the family identify their own questions before launching into the results,
and that they used visual graphs to share the information. Additionally,
Adam’s family greatly appreciated the efforts of the team to make the
results meaningful by providing many real-life examples and describing
the findings in the context of Adam’s home environment. Along with the
presence of an interpreter for the initial feedback session, these strate-
gies ensured that Adam’s parents and grandparents could all access the
information.

SUMMARY

Early intervention specialists are responsible for ensuring that the assess-
ment is authentic and reflects the child’s real-life competencies (Moeller
et  al., 2013; Neisworth & Bagnato, 2004). An authentic assessment
(Moeller et al., 2013; Neisworth & Bagnato, 2004) informs the interdis-
ciplinary team, and the family, as they select and prioritize goals for the
child’s programming (e.g., see Chapter 9, Individualized Family Service
Plans and Programming). Striving to incorporate best practices into
developmental assessment will help ensure that the essence of each child
is understood. With that understanding, professionals and families can
work collaboratively to support the child in reaching his or her optimal
potential.
Evaluation results are often described in terms of domains of func-
tioning, yet this alone is not enough to fully capture the various attri-
butes of a child. Each child is more than the sum of his or her abilities.
Consideration should be given not only to what a child can do, but also
to how the child is doing. Beyond assessing for skills that a child demon-
strates, professionals should attend to other important factors, such as
the child’s emergent sense of self, mastery, comfort in interacting with
others, and esteem.
224  Developmental Assessment

In considering best practices for developmental assessment, early

intervention professionals should be cognizant of the overarching aims
of assessment and should employ the techniques that best allow them to
understand the whole child and the family in the context of their envi-
ronment. Being mindful of the need for comprehensive, meaningful, and
authentic assessments, professionals can understand, as fully as possible,
how the child is functioning and what that functioning means in terms of
the life of the child and the family.
Acknowledgments:  The authors gratefully acknowledge Arlene
Stredler-Brown for her contributions to the development of this chapter.

SUGGESTED ACTIVITIES

1. Based on the vignette of Adam, assume that his gross motor skills, as
well as his communication and language skills, are significantly below age
expectation. His abilities in all other domains are within the normal range
for his age. Generate a visual handout that could be used when discussing
the assessment results with Adam’s family. See the Child Development
Review website for an example of a chart demonstrating progress
across several developmental domains. http://www.childdevrev.com/
index.html;  http://www.childdevrev.com/page3/page56/files/idi-chart-
17monthchecked.pdf.
2. Review three commonly used infant and toddler assessment tools (i.e.,
assessments used widely in early intervention, not with deaf or hard-of-
hearing children in particular). Identify assessment items or protocols
(i.e., assessment procedures) that may not accurately measure the skills
of an infant or toddler who is deaf or hard of hearing.
3. Using the assessments identified in activity 2 above, make two lists

of accommodations that might be necessary if administering these
tools with infants and toddlers who are deaf or hard of hearing. In the
first list, assume that the child’s hearing levels are in the moderate to
moderate–severe range and that the child communicates via spoken lan-
guage. In the second list, assume that the child’s hearing levels are in
the profound range and that the child communicates through a signed
language. What accommodations would be needed given the two differ-
ent profiles? Would the standardized tools still measure what they are
 Szarkowski and Hutchinson  225

intended to measure? How might you describe the limitations of these

protocols for the hard-of-hearing and the deaf populations?
4. Make a list of the various assessment tools used in your early interven-
tion program or a program that you know. Determine which assessment
tools include family input in the assessment process. Reflect on ways you
may be able to increase the involvement of families in their child’s assess-
ment process.

RECOMMENDED RESOURCES

1. Clerc Center at Gallaudet University: Suggested Scales of Development

and Assessment Tools
This website provides a list of assessment tools that might be useful
in assessing children who are deaf or hard of hearing. Six catego-
ries of assessment tools are listed:  (1)  auditory perception/listen-
ing skills; (2) speech/intelligibility; (3) speech reading; (4) language;
(5)  basic concepts; and (6)  sign language. (http://www.gallaudet.
edu/clerc_center/information_and_resources/cochlear_implant_edu-
cation_center/resources/suggested_scales_of_development_and_
assessment_tools.html.)
2. Massachusetts Child Care Resources––Common Assessment Tools for
Infants and Toddlers
A list of commonly used, research-based assessment tools used for
infants, toddlers, and young children. (http://machildcareresourceson-
line.org/for-providers/common-assessment-tools/.)
3. National Association for the Education of Young Children (NAEYC): Position
Statement on Early Childhood Curriculum, Assessment, and Program
Evaluation
NAEYC is a national organization that is dedicated to the needs, rights,
and well-being of all young children. This position statement was
developed based on the 2003 Joint Position Statement of the NAEYC
and the National Association of Early Childhood Specialists in State
Departments of Education (NAECS/SDE). (https://www.naeyc.org/
files/naeyc/file/positions/CAPEexpand.pdf.)
226  Developmental Assessment

4.
National Center for Hearing Assessment and Management
(NCHAM): Assessment Tools for Communication/Language and Auditory
Development
NCHAM is a national organization that is dedicated to ensuring that all
infants and toddlers who are deaf or hard of hearing are identified as
early as possible, and receive appropriate audiological, educational,
and medical interventions. NCHAM has developed a list of assess-
ment tools for communication, language, and auditory development
that have been recommended for use with infants, beginning at birth.
(http://www.infanthearing.org/earlyintervention/assessment.html.)
5. National Association of State Directors of Special Education (NASDSE)—
Assessment Tools for Students Who Are Deaf or Hard of Hearing
The NASDSE recommended list of assessment tools for deaf or hard-of-
hearing children of all ages, with many appropriate for infants and
toddlers. It includes assessments in nine categories:  (1)  cognitive/
intellectual; (2)  psychosocial; (3)  behavior; (4)  occupational therapy;
(5)  expressive and receptive language; (6)  auditory/listening skills;
(7) speech skills; (8) vocabulary, basic concepts; and (9) sign language.
(https://www.nasdse.org/Portals/0/Documents/AssessmentTools.
pdf.)
6.
Texas Women’s University—Selected Evaluation and Assessment
Instruments for Early Intervention
An extensive list of assessment tools used for infants and toddlers pro-
vided in six categories: (1) developmental screening; (2) standardized
developmental and intellectual assessments; (3) behavioral/social
emotional functioning; (4) communication; (5) listening comprehen-
sion; and (6) criterion-referenced instruments. (http://www.twu.edu/
downloads/early-intervention/mi.pdf.)

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 health-screening.
8 Collaboration for Communication, Language,
and Cognitive Development
Maribel Gárate and Susan Lenihan

Ms. Stevens, an early intervention specialist, has been working with

Mindy and her family since Mindy was 6 months old. Mindy is deaf
and has had a cochlear implant since she was 13  months old. She
is now 15 months old and has very limited receptive and expressive
vocabulary. Her family’s goal is for her to acquire spoken language.
Ms. Stevens has provided Mindy’s family with access to resources, con-
necting the family with parent support groups and guiding Mindy’s
caregivers in language and learning strategies for daily routines. Ms.
Stevens has also encouraged the family to meet other families with
deaf or hard-of-hearing children. This chapter will follow Mindy and
her family’s journey by describing two different paths they might take
to achieve their goal.

233
234  Communication, Language, and Cognitive Development

GUIDING QUESTIONS

1. What information does the early intervention specialist need to guide

and support the age-appropriate language and communication skills
for Mindy?
2. What developmental factors, programs, and services need to be

considered?
3. How can the interdisciplinary team provide support and guidance for this
family?

COMPETENCIES ADDRESSED IN THIS CHAPTER

1. Family-Centered Practice:  Family–Professional Partnerships, Decision

Making, and Family Support
2. Socially, Culturally, and Linguistically Responsive Practices Including Deaf/
Hard-of-Hearing Cultures and Communities: Sensitivity to and Respect for
an Individual Family’s Characteristics
3.
Language Acquisition and Communication Development:  Typical
Development, Communication Approaches Available to Children with
Hearing Loss, and Impact of Hearing Loss on Access to Communication
4. Factors Influencing Infant and Toddler Development Technology: Supporting
Development by Using Technology to Access Auditory, Visual, and/or
Tactile Information
5. Collaboration and Interdisciplinary Models and Practices

INTRODUCTION

Early sensory experiences, which include auditory, visual, and kinesthetic

stimuli, are crucial to the language and communication development of
infants and toddlers. These experiences support the growth of brain syn-
apses and pathways that map much of the neural circuitry providing the
foundation for future linguistic and cognitive development (Eliot, 1999).
 Gárate and Lenihan  235

During the first year of life, the brain undergoes its most dynamic period
of growth, making this period both critical and vulnerable for young
children who are deaf or hard of hearing.
Caregiver participation stands as a powerful factor in early language
development. Whether a family has chosen a listening and spoken lan-
guage approach or an American Sign Language (ASL)/English Bilingual
approach, consistent access to competent communication partners is
needed. Thus, caregivers must provide interactions that establish com-
munication, develop strong attachments, and set the basis for future lin-
guistic and cognitive development. To this end, evidence-based practices
support implementation of a family-centered approach to early interven-
tion to ensure engagement and enhance caregiver–child communication.
Interdisciplinary collaboration among early intervention professionals
is essential to providing families with the information, guidance, sup-
port, and coaching they need to promote their child’s early language
acquisition.
Children who are deaf or hard of hearing represent a linguisti-
cally diverse population with individual abilities and learning needs.
Technological advances in hearing aids and cochlear implants (CIs) as
well as early age of implantation are increasing the number of children
who are deaf or hard of hearing who can benefit from a listening and spo-
ken language approach. Children who are deaf or hard of hearing vary
in their abilities to access communication through auditory and visual
modalities. Although some children, with the benefit of listening tech-
nologies, early access, and support, attain spoken language skills com-
mensurate with their hearing peers, other children with similar supports
acquire age-appropriate language visually, usually through a signed lan-
guage, such as ASL. No two children who are deaf or hard of hearing are
the same and their access to language and the means they use to express
language vary along a continuum from fully visual using a signed lan-
guage to fully auditory relying on hearing and spoken language in most
situations. Through ongoing monitoring of progress and outcomes,
professionals and family members can determine the most efficacious
modalities for individual children.
236  Communication, Language, and Cognitive Development

This chapter will focus on the knowledge, skills, and dispositions

early intervention specialists need to support families in the estab-
lishment of early learning environments that promote early commu-
nication, language, and cognitive development. The chapter will also
address the role of assistive listening technologies and their poten-
tial benefit to the overall communication competence of young chil-
dren. Collaboration and interdisciplinary models and practices will be
emphasized to help early intervention specialists provide culturally and
linguistically diverse families with the resources and support to fully
consider all the options and opportunities available to them and their
children.

EARLY COMMUNICATION AND BRAIN DEVELOPMENT

Mindy’s family has received services since she was 6  months old. This
places her at an advantage. In working with the family, Ms. Stevens has
explained the importance that early stimulation has on Mindy’s brain
development and has worked to model ways in which the family can
engage Mindy in activities that allow for repetition, create anticipation,
and set up routines. During these times, Ms. Stevens consistently empha-
sizes the importance that sensory stimulation has on Mindy’s brain
development.
From a physiological standpoint, most children, whether they are
deaf or hearing, possess the same neurological potential from birth
(Marschark & Hauser, 2008). An infant’s earliest experiences with the
environment originate via auditory, visual, and kinesthetic input. This
sensory input along with inferences made from context allows concep-
tual representation of familiar objects and routine events to develop.
This gives way to the organization of the infant’s world via the identi-
fication, discrimination, categorization, and recollection of the expe-
riences occurring during their first year of life (Clark, 2004). Early
experiences provide the cognitive basis onto which language will be
mapped. In turn, the initial language mapping impacts further concep-
tual representation by allowing more specific categorization, complex
 Gárate and Lenihan  237

thought, and the ability to distinguish both multiple perspectives and

speakers’ intent (Clark, 2004).
The presence and absence of early sensory input affect brain synapses
and pathways. When stimulation occurs, these connections are retained,
but when an infant is deprived, the brain resorts to rewiring or eliminat-
ing the unused connections (Hawley, 2000). As time passes, brain plas-
ticity changes. Although some structures remain malleable, others are
less responsive over time. Listening, seeing, and interacting with care-
givers in their environment contribute to shaping and maintaining the
brain’s structures that serve as the foundation for language acquisition
and all future learning (Hawley, 2000).
Sharma, Dorman, and Spahr (2002) state that “in the absence of nor-
mal stimulation there is a sensitive period of about 3.5 yr during which
the human central auditory system remains maximally plastic” (p. 532).
Because natural neurological pruning is related to the quality and quan-
tity of early exposure to language, the situation for children who are
deaf and receive linguistic input solely via the auditory channel without
the benefit of appropriate listening technologies elicits concerns for the
potential effects that reduced and inconsistent input has on their devel-
oping brain (Bavalier, Dye, & Hauser, 2006). This situation highlights
the importance of providing complete access to language through the
use of optimal listening technologies, the use of a natural signed lan-
guage, or both.

CONTINUUM FOR PROCESSING AND USING LANGUAGE

When it comes to language access and use, children who are deaf or
hard of hearing have been described on two continuums of expressive
and receptive skills that range from the fully visual Signed Language
user to the fully auditory spoken language user (see Figures 8.1 and 8.2;
Nussbaum, Waddy-Smith, & Doyle, 2012). The combined use of spoken
and signed languages and auditory and visual modalities spreads across
two continuums to represent children who, for example, receive infor-
mation visually but use a spoken language to express themselves. There
238  Communication, Language, and Cognitive Development

are those children who are primarily spoken language users but can, in
specific situations, use a visual language, as well as those who are fully
bilingual and are able to code switch between the two languages as they
see fit. Where a child falls on the continuum at any given time reflects
the resources, opportunities, and options the child and the family have
accessed.
Beyond the first few years of life, how signs are used in educa-
tional placements has a significant influence on the language use and
development of children who are transitioning to more spoken lan-
guage. Educational philosophies often guide a program’s selection of
communication options. These options include the use of a natural
signed language (e.g., ASL); the use of a variety of invented signed
systems also known as manually coded forms of English; or the use
of Cued Speech, which is not a sign system but represents the pho-
nology of a spoken language via handshapes and locations. Moeller
(2006) proposed four ways to categorize how educational programs
use signs with children who have cochlear implants. These included

Receptive Communication Continuum

Fully Mostly Equal Mostly Fully

Visual Visual Visual/ Auditory Auditory
Auditory

V V A VA A V A
Nussbaum, D., Scott, S., Waddy-Smith, B., & Koch, M. (June, 2004). Spoken language
and sign: Optimizing learning for children with cochlear implants. Paper presented at
Laurent Clerc National Deaf Education Center, Washington, DC.

Adapted from McConkey -Robbins, Loud and Clear, Advanced Bionics, 2001

Figure  8.1 Receptive communication continuum. Reprinted with permission from

Nussbaum, Waddy-Smith, and Doyle (2012).
 Gárate and Lenihan  239

Expressive Communication Continuum

Fully Mostly Equal Mostly Fully

Sign Sign Sign/Oral Oral Oral

S S O SO O S O
Nussbaum, D., Scott, S., Waddy-Smith, B., & Koch, M. (June, 2004). Spoken language
and sign: Optimizing learning for children with cochlear implants. Paper presented at
Laurent Clerc National Deaf Education Center, Washington, DC.

Figure  8.2 Expressive communication continuum. Reprinted with permission from

Nussbaum, Waddy-Smith, and Doyle (2012).

foundational use, transitional use, differentiated/strategic use, and

dominant use. With the exception of programs with a dominant use
in which the emphasis was on visual communication, all others pro-
grams aimed to reduce or eliminate the use of signs in order to focus
on developing the spoken language. Nussbaum et al. (2012) adapted
Moeller’s categories to describe the language use of the general popu-
lation of children who are deaf or hard of hearing with and with-
out cochlear implants and included a group of bimodal–bilinguals to
represent individuals who become consistent users of both ASL and
English, both spoken and written.
Families, professionals, and individuals who are deaf or hard of hear-
ing use different languages (i.e., signed language, spoken language) and
different modalities (e.g., visual, tactile, auditory, oral) to communicate.
When communication modalities are used simultaneously, signing sys-
tems, rather than natural signed languages, are combined with a spoken
language. This affects the clarity of production and diminishes the expo-
sure the young child has to either language (Strong & Charlson, 1987;
Swisher & Thomson, 1985).
240  Communication, Language, and Cognitive Development

Thus, this chapter focuses on two different pathways for Mindy

that include the use of complete and natural languages, for example,
a spoken language and a signed language. (See Beginnings for Parents
of Children Who Are Deaf or Hard of Hearing in the Recommended
Resources for a description of these different languages and communi-
cation modalities.)

Sociocultural and Environmental Considerations

Ms. Stevens consistently emphasizes the importance of providing
a variety of interesting objects for Mindy to touch and smell and
encourages her family to accompany all activities with descriptions,
narratives, and natural dialogue related to objects and events in their
environment. Introducing new words and/or signs (if the family has
decided to sign with the child) for these activities and interactions
allow Mindy and her family to communicate. Although infants pos-
sess the biological impetus for language acquisition, their environ-
ment provides the spark that ignites the process. The most important
responsibility of caregivers is to ensure that Mindy has direct access to
a natural language and communication partners. Natural languages,
whether signed or spoken, are those used by the native communities
of a respective country or region. With appropriate language models,
most children acquire language following a predictably similar devel-
opmental timetable. This premise holds true for hearing children of
hearing parents learning a spoken language as well as for deaf, hard-
of-hearing, and hearing children of deaf parents acquiring a signed
language (Mayberry, 2007; Petitto, 2009).
The most immediate environmental consideration for deaf or hard-
of-hearing children occurs when the language (or languages) in their
environment is either not available or not accessible. Varying ranges of
hearing with and without amplification may create situations in which
the spoken language that is readily available in a deaf infant’s environ-
ment is not readily accessible. This environmental effect may be pres-
ent, for example, when a family that does not know how to sign wants
 Gárate and Lenihan  241

their deaf or hard-of-hearing infant to acquire a signed language. In

that case, the signed language would be an accessible language when
the child is attending visually, as it bypasses the auditory channel, but
it is not readily available in the environment. A parallel example is a
family that wants their child to acquire language through listening and
speaking, however, is unable to ensure consistent use of the appropri-
ate listening devices. The spoken language is available in the environ-
ment, but without the consistent use of appropriate listening devices
it is not always accessible. In both cases, the language acquisition pro-
cess for children who are deaf or hard of hearing differs as a result
of a mismatch between the environment and the child’s needs, and
the child and adult must put additional effort forward to decrease the
impact of this mismatch while enhancing the quality of their commu-
nication. The role of early intervention professionals and their ability
to collaborate with others can make a significant difference in the early
stages as professionals and families work together to gather informa-
tion about the child’s potential to access language through visual or
auditory modalities.
Parental socioeconomic status has been known to impact language
development (Hart & Risley, 1995). Differences in language and cul-
ture can lead to variable access to appropriate information about
language and literacy that has an impact on the decisions parents of
children who are deaf or hard of hearing make (Christensen, 2000;
Sass-Lehrer, 2004; Young & Andrews, 2001). However, when early
identification services are present and families are highly involved,
children who are deaf or hard of hearing with normal cognitive abili-
ties demonstrate advantages in language outcomes “regardless of
communication mode, degree of hearing loss, socioeconomic sta-
tus, gender, minority status, or presence of additional disabilities”
(Moeller, 2000, p. 2). Research studies continue to support the notion
that positive outcomes in language development are related to the age
of identification, the provision of quality early intervention services
(Yoshinaga-Itano, 2003), and family involvement (Calderon, 2000;
Moeller, 2000).
242  Communication, Language, and Cognitive Development

COMMUNICATION IN THE FAMILY

Most children learn to communicate through interaction with family

members (Kuhl, 2007; Topping, Dekhinet, & Zeedyk, 2013). Caregivers
responsive to their infants’ vocalizations, facial expressions, and ges-
tures meet their communicative needs. Caregivers and infants typically
develop strong attachment relationships that create an environment
that supports communication development. Infants and toddlers who
are developing typically acquire thousands of words and many rules of
grammar during the first 3  years of life. Parents and other caregivers
support the development of language skills through talking, singing,
playing, and reading.
From birth to 6  months, babies primarily communicate through
crying, cooing, and at around 6  months of age making other sounds.
Between 6 and 12  months of age babbling begins, initially without a
connection to objects; however, toward the end of this period the bab-
bling is associated with objects or people in the environment. For infants
with auditory access to spoken language the babble begins to resemble
the speech of the family. During the 12-month to 18-month period chil-
dren develop a vocabulary of about 20 words. For children who are deaf
with signing deaf parents manual “babble” and early signs develop dur-
ing the 6-month to 18-month period (Petitto & Marentette, 1991). See
Alexander Graham Bell Listening and Spoken Language Ages and Stages
and the Visual Language and Sign Language Checklist in Recommended
Resources at the end of this chapter.
For all infants and toddlers the role of the family is crucial in facilitat-
ing the development of language and communication skills. The seminal
work of Hart and Risley (1995, 1999)  with 42 families and their young
children proposed that the quantity and quality of child-directed speech
dramatically influence language outcomes for young children. Their
research showed that children who heard more words per hour and heard
a higher ratio of encouragements to discouragements developed larger
cumulative vocabularies. Their work also demonstrated that children
whose parents provided more emphasis on the relationships between
 Gárate and Lenihan  243

things and events, asked more questions, and were more responsive to
their children’s initiations had better language outcomes.
The Hart and Risley study also demonstrated that infants younger
than 11  months heard an average of 700–800 utterances per hour. The
researchers propose a model of conversational interaction consisting of
three developmental stages. The first stage, from 11 months to 19 months
of age, focuses on reciprocal interactions between the infant and caregiv-
ers. The second stage, from 20 months to 28 months, consists of intensive
one-to-one conversations. The third stage, from 29 months to 36 months,
shows the child as the primary speaker with caregivers listening and pro-
viding feedback and expansion. A key feature throughout is the emphasis
on social interaction and reciprocity.
For infants and toddlers who are deaf, Moeller (2000) identified fam-
ily involvement, including parent–child communication, as the most
important factor in early language development. The impact of a variety
of features of a caregiver’s communication style has been demonstrated in
several studies. Bergeson (2011) found that use of infant-directed speech
registers by mothers interacting with infants with cochlear implants was
even more pronounced than the infant-directed speech of mothers with
hearing children and reflected the type of acoustic scaffolding used by
parents of hearing children. The study also found an increased use of
word and utterance repetition similar to mothers’ speech to infants with
normal hearing. These findings of mother–infant interaction support the
concept that “mother and children must both be active participants in
dynamic and reciprocal social exchanges to develop language and vocab-
ulary skills” (Houston et al., 2012, p. 455). Daniel (2012) describes the fea-
tures of child-directed speech and how this applies to auditory–verbal
practice. These features, which include speech and language characteris-
tics and following the child’s lead, facilitate the development of conversa-
tional competence.
Research on infant-directed signing found that deaf mothers manip-
ulated articulatory features of ASL when communicating with their
infants by placing signs closer to the infant, changing palm orientation,
and lengthening signs via expansion or repetition of its movement.
Additionally, mothers directed the child’s eye gaze during interaction
244  Communication, Language, and Cognitive Development

and ensured that their faces and dominant signing hand were vis-
ible (Erting, Prezioso, & Hynes, 1994; Masataka, 1996). Parent–child
interactions of these types not only encourage visual engagement and
develop visual attention, they also support appropriate attachment
(Enns & Price, 2013).

Access to Communication
Ms. Stevens guides and coaches Mindy’s mother during weekly home
visits that focus on communication development, social interactions,
and cognitive activities through daily routines and engaging play. Infants
and toddlers need access to language for communication to develop.
Whether the infant is developing language through spoken or a natural
signed language, such as ASL, the availability of a competent user of that
language for a significant portion of the child’s waking hours is essen-
tial. For optimal communication development, it is most beneficial that
the competent language users are family members and caregivers who
spend extensive periods of quality time with the child engaging in sup-
portive and responsive interactions. For a young child who is developing
spoken language consistent use of hearing aids and/or cochlear implants
is required so that access to spoken language is maximized. The young
child who is developing ASL or another signed language needs consistent
access to skilled signed language users during daily routines.

Home Languages
Increasing numbers of children in the United States who are deaf or hard
of hearing are growing up in homes in which English is not the only lan-
guage used. The Gallaudet Research Institute (2011) reported that 18% of
children who are deaf or hard of hearing are living in homes in which
English is not used regularly.
Robbins (2007) uses a framework to describe three common types
of bilingual families in which children who are deaf may be raised.
Multilingual families are those in which the parents speak English and
another language fluently. English as a new language describes families
in which the parents or caregivers are just beginning to learn English or
 Gárate and Lenihan  245

may not be fluent in spoken English. Extended family refers to families

in which members such as grandparents may speak another language but
English is spoken in the home most of the time. Early intervention ser-
vices must be tailored to address the unique needs of children in different
types of bilingual homes.
Douglas and Freutel’s (2012) findings from several studies of children
in auditory–verbal programs who are bilingual showed that the mono-
lingual groups scored slightly higher on standardized measures of spo-
ken English than the children in the bilingual group but did not show
any significant differences in their ability to learn English. They describe
supportive program features for children from homes in which spoken
Spanish is the primary language such as weekly auditory–verbal ses-
sions with a native Spanish-speaking practitioner, audiology services in
Spanish, and a family language plan for providing support for Spanish
and English input.
A family in which a signed language is the primary home language
represents another type of bilingual environment. Early intervention spe-
cialists working with deaf families should be responsive to their values
and draw on the language and cultural resources of the Deaf community.
Specialists need to discuss the child’s goals for bilingual development and
provide strategies and materials parents and caregivers can use to sup-
port language and literacy development at home.

GUIDING FAMILIES TO SUPPORT THEIR CHILD’S LANGUAGE

LEARNING

Ms. Stevens implements the recommendations of the Joint Committee

on Infant Hearing [Joint Committee on Infant Hearing (JCIH), 2007] by
providing access to resources, connecting the family with other families
with deaf or hard-of-hearing children, and guiding Mindy’s caregivers in
providing opportunities for direct access to communication and language
learning during daily routines. The JCIH Position Statement recommends
that early intervention services include “a family-centered approach,
culturally responsive practices, collaborative professional-family rela-
tionships and strong family involvement, developmentally appropriate
246  Communication, Language, and Cognitive Development

practices, interdisciplinary assessment, and community-based provi-

sion of services” (p. 18). (See Chapter 4, Legislation, Policies, and Role of
Research in Shaping Early Intervention, for more information about the
JCIH Position Statement.)
Early intervention professionals support families as they foster their
deaf or hard–of-hearing infants’ and toddlers’ communication devel-
opment through guidance and coaching. Evidence-based practices for
enhancing the development of parent–caregiver and child communica-
tion may be implemented through a family-centered approach to early
intervention. (See Chapter 3, Families: Partnerships in Practice.) According
to the American Speech-Language-Hearing Association (2005) the goal
of evidence-based practice is to consider expert opinion based on experi-
ence, scientific evidence, and caregiver values to identify promising prac-
tices that will result in the highest quality services. In some cases, these
communication-promoting evidence-based practices have been adapted
from strategies used by parents of children who are not deaf or hard of
hearing. In other cases, the strategies have been designed specifically for
families of children who are deaf or hard of hearing.
Working closely with families to acquire skills that positively impact
their child’s communication abilities appears to be effective. Roberts and
Kaiser (2011) reviewed 18 studies that evaluated parent-implemented
intervention with children with delayed communication due to a variety
of conditions. These studies found that parents were successful in learn-
ing and using new communication-promoting strategies designed to
improve their children’s communication skills. This research supports the
value of family-centered early intervention and the effectiveness of guid-
ing and supporting families in implementing communication-promoting
behaviors with their children.
Compton and Niemeyer (2005) provide strategies for guiding families
of infants who are deaf or hard of hearing in communication-promoting
interactions including using eye contact, establishing joint attention, and
observing the infant’s communicative intent. They also provide recom-
mendations for ways to interact with caregivers including establishing
trust, demonstrating respect, listening to their perspective, and involving
them in all decisions.
 Gárate and Lenihan  247

In 2013, the JCIH published a supplement to the 2007 position state-

ment on newborn hearing screening. The supplement includes best prac-
tice guidelines, benchmarks, and a document on the essential knowledge
and skills needed by early interventionists who are providing services to
children who are deaf or hard of hearing and their families. The essential
knowledge and skills include competencies for implementing strategies
to support communication development. The supplement also includes
checklists for self-monitoring of fidelity of intervention for both listening
and spoken language, and ASL in Appendices 2 and 3 (JCIH, 2013).
Ms. Stevens has provided Mindy’s family with access to a variety of
electronic resources such as websites from the Alexander Graham Bell
Association for the Deaf and Hard of Hearing, Beginnings for Parents
of Children Who Are Deaf or Hard of Hearing, and the Laurent Clerc
National Deaf Education Center among others. Mindy’s parents partici-
pate in a parent group designed for families of infants and toddlers who
are deaf or hard of hearing that is led by parents of a teenager who is deaf.
Several resources, which provide support for professionals and families
in the development of communication, are listed in the Recommended
Resources section at the end of this chapter.
Lenihan and Daniels (2002) and Lenihan (2006) developed a set of 10
effective practices for early intervention with families of children who are
deaf or hard of hearing based on the work of Rosetti (2001) and evidence
from numerous studies. Table 8.1 represents an adapted version of the
principles of effective practices to encourage early communicative inter-
actions with young children who are deaf or hard of hearing.
During weekly home visits Ms. Stevens uses a family-centered
approach. The format of each visit follows the rubric for a home visit
(Moeller, Schow, & Whitaker, 2013; Stredler-Brown, Moeller, Gallegos,
& Corwin, 2004; see Chapter 9, Individualized Family Service Plans and
Programming). She often uses material from Learn to Talk around the
Clock (Rossi, 2003) and from the SKI-HI curriculum (2004). Her work
with the family reflects the principles of effective practice as described by
Lenihan and Daniels (2002).
Keeping in mind the family’s goal for Mindy to acquire a spoken lan-
guage, the next section in this chapter describes two different journeys that
248  Communication, Language, and Cognitive Development

Table 8.1  Effective Practices for Early Communicative Interactions

Principles of Effective Indicators of Effective

Practices Practices

Involve both the Involve caregivers in all communication and

child and his or language activities.
her caregivers in Ask open-ended questions about their child’s
interactions. development.
Recognize caregivers’ successful interactions.
Provide resources for family.
Encourage turn Establish and reinforce eye contact.
taking, a Use facial expressions to reinforce the child’s
critical skill and actions and vocalizations.
tool for early
Develop auditory/visual feedback by imitating
communication.
the child’s productions.
Use phrases such as “my turn” and “your turn” in
play.
Focus on functional Observe ways in which the child uses language.
communication Focus on the language that children most need.
skills and
Engage in activities that are purposeful and
not language
playful.
structure.
Ask caregivers to share communication goals for
their children.
Use activities that develop competencies in several
areas.
Follow the child’s Attend to the child’s eye gaze and gestures to
lead and identify determine the child’s interest.
opportunities Respond to the child’s initiations.
for spontaneous
Observe the child’s interests when playing freely.
communication.
Prepare multiple materials and activities so that
the child may choose.
Encourage caregivers Repeat the child’s vocalizations/signs and
to respond in gestures.
ways that will Use pauses and wait time to encourage the child
enhance the to initiate.
child’s language
Use appropriate questions.
responses.
Expand the child’s utterances.
Encourage positive interactions.
 Gárate and Lenihan  249

Table 8.1 Continued

Principles of Effective Indicators of Effective

Practices Practices

Arrange the Offer choices and wait for the child to respond.
environment Spend time in play with the child to set the stage
and activities for interactions.
to encourage
Omit a needed object from an activity; wait for
communicative
the child to express the need.
interactions.
Use dolls, puppets, and toys to model and
encourage vocalization.
Plan activities that are developmentally
appropriate for the child.
Use action-oriented Participate in action-oriented activities that are
activities to part of the child’s daily life.
stimulate Use pretend play.
communicative
Use movement and music to develop language.
exchanges.
Use games such as “peek-a-boo” and “so big.”
Encourage parents to Use genuine daily routines as opportunities for
engage in natural communication.
conversations and Encourage parents to include the child in family
activities with the tasks and family fun.
child.
Use verbal (signed or spoken) routines.
Share books daily.
Employ a variety of Establish modeling and imitating for developing
communication- new language.
eliciting Reinforce the child’s thoughts with language.
techniques.
Use songs, finger plays, and nursery rhymes to
reflect the fun in language.
Go beyond labeling objects.
Introduce a question with a comment that
establishes the topic and context.
Be alert to Keep a developmental log that records language
opportunities used in new settings.
to expand Brainstorm with caregivers the settings and contexts
communication that may reinforce a new language skill.
skills to other
Involve the extended family and friends.
settings and
contexts. Use naturalistic environments to increase
generalization.
250  Communication, Language, and Cognitive Development

Mindy’s family could take to achieve this goal. The first path describes an
ASL/English bilingual approach to language development based on the
use of American Sign Language alongside the auditory benefits Mindy
receives from a listening device. The next path describes a listening and
spoken language approach to language development based solely on the
use of listening technologies and auditory–verbal practices.

ASL/ENGLISH BILINGUAL ACQUISITION

Evidence-Based Research Related to Communication

Using a Signed and a Spoken Language
Like many hearing families, Mindy’s family wants her to acquire a spoken
language and opted for a cochlear implant in addition to signing. Ms.
Stevens worked with the family toward this goal because she knows that
early competence in a visual language can be effectively used to support
and facilitate a child’s spoken language development. Mindy’s exposure to
a visual language and age of implantation should also work in her favor.
Although some professionals advocate for ASL (or another natural signed
language) and written English (or another spoken language) as a form of
bilingual development, the bilingual perspective discussed here includes
the development of two languages and all their abilities, that is, receptive
and expressive signing skills as well as spoken and written skills. Support
for this approach is derived from the field of general bilingual education.
Research evidence points to a positive transfer between the two, or more,
languages a bilingual person uses with evidence of cognitive and commu-
nicative benefits (see Genesee, Lindholm-Leary, Saunders, & Christian,
2006, for a review of the bilingual literature).
Although spoken language bilingualism is seen as a positive attribute,
misconceptions about signed languages have prevented some families
from considering bilingualism as a viable option for their deaf or hard-of-
hearing children. A  prime example is the notion that using a signed
language with young deaf or hard-of-hearing children in general, and
children with cochlear implants in particular, precludes the development
of spoken language. This idea has prevailed notwithstanding evidence
 Gárate and Lenihan  251

to the contrary. In a study of 22 preschool children in Sweden who had

cochlear implants and access to a signed language prior to implantation,
the researchers reported that the children with the best oral skills also
had a well-developed signed language (Preisler, Tvingtedt, & Ahlström,
2002). Yoshinaga-Itano (2006) found that the children in her study with
access to signing prior to implantation achieved positive spoken lan-
guage outcomes. Cochlear implant users with access to signing prior to
implantation appear to exceed the performance of cochlear implant users
who do not have this early access (Hassanzadeh, 2012; Yoshinaga-Itano,
Sedey, & Uhler, 2008). Though more research evidence is needed with
larger numbers of children, research studies have also demonstrated an
overall positive relationship between early ASL skill and English literacy
(Cummins, 2006), as well as cognitive benefits derived from bilingualism
(Fish & Morford, 2012; Galambos & Goldin-Meadow, 1990).
Fish and Morford (2012) conducted a review of the literature on the
benefits of bilingualism on cognition and language development includ-
ing ASL/English bilingualism. As with spoken language bilinguals, simul-
taneous ASL/English bilinguals achieve language milestones at similar
developmental timetables. Early bilingualism promotes language and
literacy development and higher executive function control. Children
placed in maintenance bilingual education exhibit heightened meta-
linguistic awareness, mental flexibility, creative thinking, and concept
development (Bialystok, 2007; Grosjean, 2008).
Perhaps the most significant research finding to date that lends sup-
port to the viability of ASL/English bilingualism for deaf children comes
from the neuroimaging research conducted with both deaf and hearing
bilingual subjects. The research concluded that the human brain does not
discriminate between a signed language and a spoken language (Petitto
et  al., 2001; Petitto, 2009). Because the brain does not detect modality
(auditory or visual) in a language, it is equipped to initiate the language
acquisition process with a spoken and/or a signed language as long as
the input it receives is complete and accessible. This is an important
point to consider because even with advances in technology that pro-
vide enhanced access to auditory input, the input is not equivalent to
that of hearing children and some deaf children often need access to
252  Communication, Language, and Cognitive Development

visual communication (Calderon, 2000; Moeller, 2000; Yoshinaga-Itano,

2003). The ASL/English bilingual approach is a viable option for chil-
dren with varying access to auditory or visual stimuli and preferences for
expressive and receptive language use. The type and degree of visual and
auditory support needed often depend on the characteristics of the child
(Nussbaum et al., 2012).
The interrelationship between cognition and language is established
early in the child’s life. Thus, a bilingual emphasis on early language
development aims to ensure that children who are deaf or hard of hear-
ing have two natural and accessible languages to support cognitive, lin-
guistic, and social–emotional development (Gárate, 2011; Hassanzadeh,
2012; Mitchiner, Nussbaum, & Scott, 2012). As such, acquiring a signed
language alongside the development of spoken language skills is seen as
an asset that can lead to cognitive and communicative benefits (Fish &
Morford, 2012; Gárate, 2012). Much like with first language acquisition,
becoming a functional simultaneous bilingual is optimized when access
to both languages is provided early in the child’s life (Petitto, 2009).
Families with infants and toddlers who are deaf or hard of hearing need
information about ASL or the native sign language of their country and
bilingual education as early as possible.
Research with sign–speech bilinguals has established that exposure
to a signed and a spoken language from birth does not cause delays or
confusion (Petitto & Kovelman, 2003). Instead, “the age of first bilin-
gual exposure is a vital predictor of bilingual language and reading
mastery” (Petitto, 2009, p. 1). Similarly, early access to a natural lan-
guage, whether it is spoken or signed, is a predictor of positive spo-
ken language outcomes for children who are deaf and use cochlear
implants (Yoshinaga-Itano & Sedey, 2000). Mitchiner and Sass-Lehrer
(2011) report on a study of Deaf mothers who chose cochlear implants
for their children in order to support their children’s bilingual devel-
opment. With a strong foundation in ASL provided at home, access to
auditory information through the use of the cochlear implant, and pro-
fessional support for the development of spoken language, the children
in this study were afforded “greater opportunities, independence, and
access” to both languages and cultures (p.  90). In contrast, research
 Gárate and Lenihan  253

finds that limited exposure to a complete language, incomplete or

inconsistent access to a second language, and delayed introduction to
literacy practices in either language have lasting linguistic, cognitive,
and academic consequences for children who are deaf (Grosjean 2008;
Mayberry, 2007; Petitto, 2009).

Facilitating Language Learning through Vision

Ms. Stevens, who knows how to sign, has taught the family simple signs
during weekly visits and provided links to ASL story telling sites, Baby
Signs DVDs, books, and sign videos from which the family can learn.
She has also introduced Mindy’s family to both deaf and hearing par-
ents of deaf children who have opted to raise their children as bilin-
guals. In addition, Ms. Stevens put Mindy’s parents in contact with the
local Deaf Mentor program. (See Chapter 5, Collaboration with Deaf and
Hard-of-Hearing Communities.)
Like all other sensory input, visual input has an important role in brain
development, language comprehension, and learning in general. In hear-
ing and deaf people alike, speech processing depends on both vision and
audition. The input from both senses interacts and contributes to lan-
guage comprehension (Morere, 2011a, 2011b). Vision also has a constant
role for deaf children who depend on speechreading.
Learning through a visual language has cognitive, linguistic, and social
benefits. Although research reports that a growing proportion of deaf
children receiving a cochlear implant at an early age who are educated in
oral communication programs achieve spoken language levels in recep-
tive and expressive vocabulary within the average range of their hearing
peers, the same research reports that “there were a number of children
who did not reach age-appropriate levels of spoken language compe-
tence” (Geers, Moog, Biedenstein, Brenner, & Hayes, 2009, p. 383).
Early access to a visual language (e.g., ASL) initiates the language
acquisition process during the critical period of brain development
(Fish & Morford, 2012) preventing the delays that auditory stimulation
alone may create. In the case of children who will receive a cochlear
implant, learning a visual language can prevent cognitive delays by
254  Communication, Language, and Cognitive Development

allowing infants to access information before, during, and after the

implant. This access allows children to communicate and establish
caregiver–child, child–adult, and child–child interactions that foster
social–emotional development. Beyond the early years, maintaining
the use of a signed language provides the child with communication
options in specific situations (e.g., noisy environments, among all deaf
or hard-or-hearing signers) or in the absence of their cochlear implant.
Although it is too early to determine what quantity and quality of
input Mindy will ultimately derive from her implant, the fact that she
has been exposed to signing, and interacted with other signing infants
and toddlers and their families, has already allowed Mindy’s brain to
map language pathways and to establish the basis for future symbolic
learning. When Mindy begins to attend to spoken language, her brain
will be ready to add new labels to the concepts she knows in sign and
give way to bilingual development.
The next section describes Mindy’s path to language acquisition via
a listening and spoken language approach and the use of listening tech-
nologies and auditory–verbal practices.

LISTENING AND SPOKEN LANGUAGE ACQUISITION

At least 90% of children who are deaf or hard of hearing have parents
who are hearing. This reality, coupled with advances in newborn hear-
ing screening and listening technology, has led to increasing numbers
of families choosing a listening and spoken language approach for their
children (Alberg, 2011; Gallaudet Research Institute, 2002, 2011). For
these families it is essential that their early intervention service providers
possess the knowledge and skills needed to effectively support the child’s
early development of listening and spoken language. Most professionals
working to support the development of listening and spoken language as
the child’s primary means of communicating and learning do not include
a signed language in early intervention services. For most families choos-
ing a listening and spoken language approach, a signed language is not
used. In this section of the chapter, findings and strategies for developing
 Gárate and Lenihan  255

listening and spoken language that do not include a signed language are
discussed.
At 15 months of age, Mindy’s parents met with the early intervention
team including the service coordinator, Ms. Stevens, and Mindy’s audi-
ologist for a 6-month review. In this scenario, Ms. Stevens is a certified
listening and spoken language specialist, auditory–verbal therapist who
supports Mindy’s use of listening to develop spoken language. Mindy
demonstrates strong speech perception at the detection stage and is
beginning to identify a number of sounds and common spoken utter-
ances such as her name. Ms. Stevens and Mindy’s parents noted that
Mindy demonstrates appropriate communicative intent, uses two words
(mama and bye-bye), and understands 10 words. Ms. Stevens noted that
most of Mindy’s receptive understanding consists of nouns and the team
added an objective on her Individualized Family Service Plan (IFSP)
related to more functional language.

Listening Technologies for Auditory–Verbal Practice

The emphasis on listening for the development of spoken language is a
primary component of auditory–verbal practice. Ms. Stevens empha-
sized that in order for Mindy to maximize access to spoken language,
optimal audiological technology must be used consistently. For certain
levels of hearing, digital hearing aids provide the best quality of spo-
ken language input. For severe-to-profound levels of hearing that are
symmetrical, cochlear implants are usually the most effective listening
technology. For a child with asymmetrical hearing levels, a cochlear
implant for the severe-to-profound level and a hearing aid for the mild-
to-moderate level are usually most effective in increasing access to spo-
ken language. In addition to these personal listening devices, sound
field and FM systems support listening in noise and at a distance in
home, school, and childcare settings. A high level of knowledge and
skill in listening technology is necessary for effective early interven-
tion services. For detailed information about listening technologies for
young children who are deaf or hard of hearing see Cole and Flexer
(2015) in the Recommended Resources.
256  Communication, Language, and Cognitive Development

Evidence-Based Research on Communication

Using Listening and Spoken Language without Signs
The primary goal of a listening and spoken language approach is to
develop communication through speech perception and speech produc-
tion (Estabrooks, 2012; Spencer & Marschark, 2010). Several factors have
been shown to positively impact the development of spoken language
including age of early intervention services, age of implantation for chil-
dren using cochlear implants, family involvement, and the type of early
childhood intervention program (Geers & Nicholas, 2013; Moeller, 2000;
Moog & Geers, 2010; Yoshinaga-Itano, Sedey, Coulter, & Mehl, 1998).
Evidence documenting successful listening and spoken language comes
primarily from two areas of study:  auditory–verbal practice outcomes
and the impact of cochlear implants on communication development.

Auditory–Verbal Practice
Early intervention specialists for children who are deaf or hard of hear-
ing and their families often use an auditory–verbal approach, which
does not include the use of a signed language. According to Estabrooks
(2012), “auditory–verbal practice includes guidance, therapy, education,
advocacy and family support. Auditory–verbal practice is the application
and management of hearing technology in conjunction with strategies,
techniques and conditions, which promote optimal acquisition of spoken
language” (p. 2). The primary goals are for the child to learn to listen and
talk with conversational competence and to be educated in general edu-
cation settings. (See Estabrooks, 2012, and Rhoades & Duncan, 2010, for
comprehensive descriptions of auditory–verbal practice.)
For early interventionists to use evidence-based practices it is
important to be knowledgeable of the research supporting the use of
auditory–verbal strategies. The following studies document the success-
ful outcomes of auditory–verbal practice for the development of listen-
ing, language, speech, and academic achievement. Many of the children
and families in these studies received family-centered early intervention
services since a focus on coaching and guiding parents is a key compo-
nent of auditory–verbal practice. Overall, this research demonstrates
 Gárate and Lenihan  257

that with early identification, early access to spoken language through

amplification or cochlear implantation, and early auditory–verbal ser-
vices, most children will progress and maintain language development
commensurate with their hearing peers without the use of sign language.
Children’s expressive language development may be predicted by age
of identification, by device fitting, by early intervention services, and
by the teachers’ expectations of the child (Wu & Brown, 2003). The 20
children in this study began auditory–verbal services between 4 and
54 months. Wu and Brown (2003) found that parents’ expectation of the
teacher’s use of auditory–verbal practice was an additional factor predict-
ing the children’s receptive language development. In another study in
England, Hogan, Stokes, White, Tyszkiewicz, and Woolgar (2008) found
auditory–verbal therapy to be highly effective for accelerating spoken
language development for all age groups and for children using differ-
ent types of hearing technology. Hogan and colleagues assessed spoken
language at the time of entry into an auditory–verbal program and at
6-month intervals.
Dornan, Hickson, Murdoch, and Houston (2009) studied the speech
production and language of 25 children in an auditory–verbal therapy
program in Australia over a 21-month period. The children in the study
demonstrated improved speech perception skills, and their rate of prog-
ress for speech and language skills was similar to that of children with
typical hearing. There was also significant improvement in scores for
auditory comprehension, oral expression, total language, and articula-
tion of consonants. At the final test point 84% of the children scored
within the typical range for total language age, compared to 58.6% at the
initial assessment.
Researchers studying 45 children who were identified early with a
range of hearing levels and who received auditory–verbal early interven-
tion services assessed the children’s performance in speech production,
vocabulary, and receptive and expressive language at ages 3 and 5 years
(Fulcher, Purcell, Baker, & Munro, 2012). By 3 years of age, 93% of the
children scored within normal limits for speech and 95% scored within
normal limits for receptive and expressive language. By 5  years of age,
96% were within normal limits for speech and 100% within normal limits
258  Communication, Language, and Cognitive Development

for language. (See Estabrooks, 2012, pp. 419–436, for a summary of addi-

tional research on auditory–verbal outcomes.)

Outcomes of Cochlear Implantation

When Mindy’s parents met with the audiologist, she reminded them
that Mindy’s cochlear implant had only been turned on for 8 weeks and
that Mindy was a very new listener. Children with hearing in the nor-
mal range listen for at least 9–12 months before using spoken words. She
assured them that she would continue assessing Mindy’s ability to access
spoken language through listening during ongoing audiological visits
and that Ms. Steven’s would encourage and monitor her listening during
weekly home visits.
“Without question, pediatric cochlear implantation has led to improved
spoken language skills for deaf children, with the majority of those who
receive a cochlear implant by age 2 years now scoring within a SD [stan-
dard deviation] of hearing age mates after a few years of use” (Geers &
Nicholas, 2013, p. 643). In a study to determine if the language benefit of
early age of implantation is maintained, Geers and Nicholas found that
age-appropriate spoken language skills were more likely to continue into
mid-elementary school for infants and toddlers who received implants
before age 36 months. Multiple studies have demonstrated that children
who receive a cochlear implant at the youngest ages tend to have improved
outcomes in expressive language, receptive language and vocabulary
as well as speech perception and production (Dettman, Pinder, Briggs,
Dowell, & Leigh, 2007; Geers & Nicholas, 2013).
In a study of nine preschool children with cochlear implants, results
showed that the children achieved spoken lexical skills within the aver-
age range when compared to children of the same age with normal
hearing (Luckhurst, Lauback, & Unsterstein VanSkiver, 2013). The chil-
dren with cochlear implants received services in a listening and spoken
language program from an early age and the average age of cochlear
implantation was 19.2  months. With this information, Ms. Stevens
encouraged Mindy’s family to continue to support the development of
Mindy’s listening skills.
 Gárate and Lenihan  259

Facilitating Language Learning through Listening

The principles of auditory–verbal practice (Estabrooks, 2012) emphasize
the importance of early identification and services for infants and tod-
dlers that focus on guidance and coaching of parents and other caregiv-
ers. Family-centered principles recognize parents and caregivers as the
primary facilitators of their child’s communication development and
the importance of daily activities in creating environments that support
communication development. The auditory–verbal practice principles
include a focus on integrating listening and spoken language into all
aspects of the child’s life.
A foundational aspect of auditory–verbal practice is the empha-
sis on the development of listening skills. Cole and Gill (2012) state,
“Maintaining auditory access and maximizing opportunities for the child
to listen and talk need to remain the focus when the goal is to under-
stand spoken language” (p. 277). Wilson (2012) describes a suggested
framework for listening and spoken language that addresses levels of
development including auditory awareness, auditory discrimination, and
auditory memory among other listening and spoken language stages. The
Model for Listening (Estabrooks, 2012, pp. 402–407) guides profession-
als and families in auditory skill development. Family-centered sessions
include activities that provide rich auditory input such as sound–object
association, songs, rhymes, shared book reading, play, and conversation.
Learn to Talk around the Clock (Rossi, 2003) is an example of a curricu-
lum that includes these activities for early intervention.
The purpose of developing listening skills is to enhance the auditory
feedback loop and to develop speech production and spoken language. In
addition to spoken language input, early interventionists encourage vocal
play through responsiveness and communicative turn-taking and design
activities that create a need for spoken communication (Winkelkotter &
Srinivasan, 2012). Strategies such as waiting, sabotage, and arranging the
environment to elicit communication are also used. See Table 8.1.
Early intervention sessions frequently include storytell-
ing, shared book reading, and the use of children’s literature as
communication-promoting activities. Smith and Stowe (2012) describe
260  Communication, Language, and Cognitive Development

storytelling with young children as an excellent way to build vocabu-

lary, develop conversation, and grow creativity. Caleffe-Schenck (2012)
provides examples of ways to use children’s literature to develop lis-
tening skills including awareness, identification, memory, sequenc-
ing, and processing. Evans and Wilson (2012) identify strategies that
caregivers of children who are deaf or hard of hearing can use daily in
reading to their children.
Auditory–verbal sessions for infants and toddlers and their fam-
ilies are play-based and activities are designed to maximize the
value that play brings to early learning (Laferriere & Rossi, 2012).
Developmentally appropriate toys, games, and role plays provide
opportunities for meaningful interactions among children, parents,
and professionals.
As Mindy listens to the sounds and spoken language in her envi-
ronment and makes connections between spoken language and the
objects and actions of her daily routines she continues to develop
communication skills. She consistently turns when her name is called
and identifies when she hears meaningful sounds such as the garage
door opening when her father returns from work. With consistent
opportunities to interact with her family through listening and spo-
ken language it is likely that she will make rapid growth in listen-
ing skills, receptive language, and expressive language. She will use
age-appropriate functional language such as “uh-oh,” “my turn,” “all
gone,” and “no” and add spoken words and two-word utterances such
as “my book,” “Daddy car,” and “more, please.” With consistent use of
her cochlear implant and effective early intervention services from Ms.
Stevens, a listening and spoken language specialist, she will acquire
language through listening and most likely develop spoken language
commensurate with that of her hearing peers.

Effective Interdisciplinary Collaboration of Professionals

and Family Members Using Either Listening and Spoken Language
or ASL/English Bilingualism
When Mindy’s mother reported that she had recently returned to work
3 days a week and that Mindy was receiving childcare from an aunt who
 Gárate and Lenihan  261

had two young children, she noted that the aunt was still not confident
about how to use the cochlear implant and often left it off for long peri-
ods of the day after Mindy’s morning nap. The parents and profession-
als decided to begin providing early intervention services in the aunt’s
home once per week in addition to the weekly visit to Mindy’s home.
They agreed that Ms. Stevens would provide guidance to Mindy’s aunt to
ensure that the cochlear implant was used all waking hours and coach her
in communication-promoting behaviors.
According to IDEA, Part C, and the JCIH (2007) collaboration is
required to achieve the goals of early intervention. Professionals work-
ing in early intervention have increasingly complex responsibilities that
require a team approach. Friend and Cook (2010) define collaboration as
a style for direct interaction between at least two coequal partners volun-
tarily engaged in shared decision making as they work toward a common
goal. Luckner and Rudolph (2009) describe the personal characteristics
needed for effective collaboration including empathetic listening, honor-
ing cultural differences, and maintaining confidentiality. Collaboration
is at the core of family-centered practice and yet professional prepara-
tion programs are just beginning to focus on interdisciplinary learning
and collaboration skill development (Lenihan & Rice, 2012; Trivette &
Dunst, 2000).
The collaborative relationship of the family with professionals in audi-
ology, speech-language pathology, and deaf education is essential in
communication development. Evidence-based audiological assessment
requires collaboration among the professionals and the family members
(MacIver-Lux & Estabrooks, 2012). Shared observations, guidance, sup-
port, and ongoing communication are required to ensure that the child
has optimal access to communication.
The team working with Mindy’s family decided that in addition to
continued family-centered early intervention services Mindy and her
parents would attend a weekly program at a center for children who are
deaf or hard of hearing with a small group of other families of toddlers
facilitated by Ms. Stevens, and Mindy would enroll in the three morning a
week toddler group that included children who are deaf as well and peers
with typical hearing. Ms. Stevens and the teacher of the toddler group
262  Communication, Language, and Cognitive Development

agreed to collaborate on assessment and planning to ensure that Mindy

maintains age-appropriate progress in communication development.

SUMMARY

Infants and toddlers need early sensory experiences that stimulate com-
munication, language, and cognitive development. Brain synapses and
pathways that map linguistic neural circuitry depend on them. Caregivers
who interact with their infants and toddlers establish the foundation for
future linguistic and cognitive development. Children who are deaf or
hard of hearing need consistent access to competent communication
partners regardless of the pathway to language development they follow,
that is, listening and spoken language or ASL/English Bilingual.
Working together to support the child and the family is the primary
goal of the early intervention team. Of paramount importance is moni-
toring Mindy’s language progress to ensure that the language(s) and
modality(ies) used support the timely acquisition of language and mini-
mize the possibility of language delay. Together they can create a com-
munication and language plan describing the specific services, settings,
family members, and professionals who will support Mindy’s develop-
ment. This communication plan will be attached to Mindy’s Individualized
Family Service Plan (IFSP) and include outcomes and strategies focused
on promoting language learning throughout the day. Interdisciplinary
collaboration and a family-centered approach increase the likelihood for
success regardless of the chosen path to language acquisition. The next
chapter will address the IFSP process and how communication and lan-
guage goals are integrated into the early intervention programming for
deaf or hard-of-hearing children.

SUGGESTED ACTIVITIES

1. Observe a family child session (e.g., home visit) and note the ways in
which the professionals guide and coach the parents and other caregiv-
ers in communication development. If the child is using a listening and
 Gárate and Lenihan  263

spoken language approach, observe the ways the professionals maximize

access to spoken language for auditory skill development, encourage
vocalization and speech production, and integrate listening and spoken
language. If the child is using an ASL/English bilingual approach, observe
the ways the professionals encourage joint attention, direct eye-gaze for
sign language development, and make associations between concepts in
ASL and spoken English.
2. View videos of early intervention sessions such as “The Baby Is Listening”
available from the Alexander Graham Bell Association for the Deaf and
Hard of Hearing, https://netforum.avectra.com/eweb/shopping/shop-
ping.aspx?site=agbell&webcode=shopping&shopsearchcat=merchandis
e&prd_key=96fb6b7e-d487-4506-96e1-5b6a3452eff1, and note strate-
gies used to develop listening and spoken language.
3. View the video “Through Your Child’s Eyes” available from the California
State University–Northridge and the California Department of Education,
http://www.csun.edu/~tyce/, and note the reasons these hearing fami-
lies chose an ASL/English bilingual approach.
4. Interview early interventionists and parents and caregivers of young chil-
dren who are deaf or hard of hearing to explore ways in which they have
collaborated in developing communication.
5. Interview a deaf or hard-of-hearing parent who has chosen cochlear

implants for his or her deaf child. Explore the reasons for the decision
as well as plans for educational placement and services available for
the child.

RECOMMENDED RESOURCES

1. Alexander Graham Bell Association for the Deaf and Hard of Hearing,
Listening and Spoken Language Knowledge Center
http://listeningandspokenlanguage.org/.
Family resources for listening and spoken language including ages and
stages of language development, assistive hearing technology, and
language development resources.
2. Beginnings for Parents of Children Who Are Deaf or Hard of Hearing
http://ncbegin.org.
264  Communication, Language, and Cognitive Development

Beginnings is an organization that helps families understand the diverse

needs of children who are deaf or hard of hearing. Beginnings includes
technical information on hearing and language, emotional support for
families, and resources and referrals.
3. Bodner-Johnson, B., & Benedict, B. S. (2012). Bilingual deaf and hearing
families: Narrative interviews. Washington, DC: Gallaudet University Press.
4. Boystown National Research Hospital
http://www.babyhearing.org/.
Resources for professionals supporting families including hearing and
amplification and language and learning.
5. Cole, E., & Flexer, C. (2015). Children with hearing loss: Developing listen-
ing and talking, birth to six (3rd ed.). San Diego, CA: Plural Publishing.
6. Estabrooks, W.  (Ed.). (2012). 101 Frequently asked questions about

auditory-verbal practice: Promoting listening and spoken language for chil-
dren who are deaf and hard of hearing and their families. Washington,
DC: AG Bell.
7. Laurent Clerc National Deaf Education Center
http://www.gallaudet.edu/clerc_center.html.
Information, training, and technical assistance for parents and profession-
als. See Help for Babies 0 to 3
https://www.gallaudet.edu/clerc_center/information_and_resources/info_
to_go/help_for_babies_%280_to_3%29.html.
A Good Start: Suggestions for Visual Conversations with Deaf and Hard of
Hearing Babies and Toddlers
https://www.gallaudet.edu/clerc_center/information_and_resources/
info_to_go/help_for_babies_%280_to_3%29/language_development_
for_babies/visual_conversations.html.
Laurent Clerc Cochlear Implant Education Center (CIEC)
https://www.gallaudet.edu/clerc_center/information_and_resources/
cochlear_implant_education_center.html.
8. National Center for Hearing Assessment and Management (NCHAM)
http://www.infanthearing.org/.
Research and training for newborn hearing screening and early inter-
vention including A Resource Guide for Early Hearing Detection and
Intervention E-Book.
9. Resources for Cochlear Implant Users
Resources designed to support the listening and language development
of children with cochlear implants; professional development webinars
 Gárate and Lenihan  265

Advanced Bionics: Tools for Schools

https://www.advancedbionics.com/com/en/suppor t/tools_for_
schools.html.
Cochlear Americas: HOPE Cochlear (Re)habilitation Resources
http://hope.cochlearamericas.com/.
Med El: Bridge to Better Communication
http://www.medel.com/us/rehabilitation/.
10. Rhoades, E., & Duncan J.  (2010). Auditory-verbal practice:  Toward a

family-centered approach. Springfield, IL: Charles C Thomas Publisher Ltd.
Snoddon, K. (2012). American sign language and early literacy: A model
parent-child program. Washington, DC: Gallaudet University Press.
11. Visual Language & Visual Learning: Science of Learning Center
http://vl2.gallaudet.edu/research/research-briefs/
http://vl2parentspackage.org/
http://vl2.gallaudet.edu/resources/asl-assessment-toolkits/.
Research briefs on visual languages; Parent Package including tips for
families, resources, ASL storytelling, and ASL assessment tools.
12. See Simms, L., Baker, S., & Clark, M. D. (2013). Visual Language and
Sign Language Checklist (VLSL). Washington, DC:  Gallaudet University
Press for studies of sign language. The standardized Visual Language
and Sign Language Checklist for signing children is a comprehensive
checklist that can be used to set learning goals, identify gaps in learn-
ing, and develop appropriate materials to support development.
Also see Simms, L., Baker, S., & Clark, M. D. (2013). The standardized
visual communication and sign language checklist for signing chil-
dren. Sign Language Studies, 14(1) 101–124.

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9 Individualized Family Service
Plans and Programming
Rosemary Gallegos, Kristi Halus, and Jodee Crace

Sandra is an early childhood professional with specialized training

and experience as an educator of children who are deaf or hard of
hearing. She provides service coordination and early intervention ser-
vices for Emily and her family. Emily is 24 months old and is deaf.
Sandra is preparing for Emily’s Individualized Family Service Plan
(IFSP). Emily’s family has been receiving early intervention services
through their state’s IDEA Part C program since Emily was 6 months
old. Emily primarily communicates using sign language and is devel-
oping spoken language. Hearing aids provide her with access to some
speech sounds. Emily is functioning at an 18-month level in all devel-
opmental areas. The interdisciplinary team, including Emily’s parents,
would like to focus on enhancing her language development and have
concerns about her gross and fine motor development. Emily’s parents
have told Sandra that they would like the upcoming IFSP meeting to
include the following: (1) a review of Emily’s progress and update of
the expected outcomes by the next 6 months, (2) a review and update
of what the family wants to learn, and (3) an adjustment of services
for both Emily and the family as needed based on progress they and

275
276  Individualized Family Service Plans

Emily have made toward their outcomes. The family would also like
to begin discussing Emily’s transition to preschool when she becomes
3 years old.

GUIDING QUESTIONS

1. What are the components of an IFSP and how do they support

family-centered practice?
2. What information should the service coordinator and the interdisciplinary
team gather in preparation for a review of the progress, outcomes, and
services of a child who is deaf or hard of hearing?
3. How can early intervention professionals, community agencies, and the
service coordinator collaborate to support the child and family?
4. How should professionals and families work together throughout the IFSP
process?
5. What child and family characteristics should the interdisciplinary team con-
sider when discussing possible services and opportunities for the child?

COMPETENCIES ADDRESSED IN THIS CHAPTER

1. Planning and Implementation of Services:  Creating a Lesson Plan,

Conducting a Home Visit, Developing the IFSP, and Using Appropriate
Curriculums, Methods, and Resources
2. Collaboration and Interdisciplinary Models and Practices

INTRODUCTION

The Individual Family Service Plan (IFSP) is a process mandated in the

United States by the Individuals with Disabilities Education Act Part C
(IDEA, 2004)  that strategically aligns family, community, and profes-
sional resources to provide effective services for a child and his or her
family. Sandra, with her specialized training and experience as an early
 Gallegos et al.  277

childhood educator and deaf educator, comes to the IFSP “table” with
expertise in areas critical to understanding the development of young chil-
dren who are deaf or hard of hearing. This chapter will concentrate on the
application of specialized information about the development of a child
who is deaf or hard of hearing within the framework of the IFSP process
and the professional competencies of “Planning and Implementation of
Services” and “Collaboration and Interdisciplinary Models and Practices”
[Joint Committee on Infant Hearing (JCIH), 2013]. The chapter will pro-
vide (1) an overview of the IFSP process, (2) the development of child and
family outcomes, (3)  service delivery opportunities and environments
that support the attainment of outcomes, including interdisciplinary
planning, (4) effective home visits, (5) the transition from early interven-
tion to preschool, and (6) special considerations for the IFSP team when
a child is deaf or hard of hearing.
Emily’s family has requested that the IFSP team review their child and
family outcomes, include greater support for her language development
and motor skills, and explore opportunities for preschools. Sandra’s job
is to prepare herself and the team to align the family’s priorities with
information from Emily’s most recent assessments. She then needs to
facilitate a dialogue among team members, including the family, to deter-
mine child and family outcomes that are most appropriate for the next
6–12 months. The team will also share their observations about how and
in what settings Emily learns best and what outcomes can be achieved
through family resources and daily routines; it will then develop a plan
that is calculated to support Emily’s continued development.

THE INDIVIDUAL FAMILY SERVICE PLAN (IFSP)

The Whole Child Approach

The development of an IFSP for deaf or hard-of-hearing infants and tod-
dlers includes all the requirements of the United States federal and state
regulations under Part C of the Individuals with Disabilities Education
Act (IDEA). Emily’s IFSP team will use a whole child approach [National
Association for the Education of Young Children (NAEYC), 2009] when
278  Individualized Family Service Plans

considering her development. This means that they will look at her over-
all development within the domains of cognition, physical status (includ-
ing vision, hearing, and health), communication, social and emotional
skills, and adaptive development [34 CFR 303.344(a)] and how these
areas of development influence each other.
The team will also consider the sequence of child development and
Emily’s individual learning style, strengths, and needs. They will integrate
her family’s priorities and consider how her learning is influenced and
supported by her family culture, resources, and social contexts (NAEYC,
2009). What is unique to Emily as a child who is deaf is that the team
must carefully consider her development of and access to language and
communication and how this interacts with her overall development
and learning. Acquisition of language occurs in the early years of life
and is dependent on exposure to meaningful language and communica-
tion. (See Chapter  8, Collaboration for Communication, Language, and
Cognitive Development). Language development is influenced by quality
interactions with others using a wide variety of vocabulary (Hart & Risely,
2003; Kovelman, Baker, & Petitto, 2008). The IFSP team must ensure that
Emily’s plan optimizes learning opportunities that are language and com-
munication rich and accessible.

Family-Centered Practice
The IFSP is a vehicle for implementing family-centered practice. A major
policy shift occurred in 1986 with amendments to Public Law 99-457 of
the Education for All Handicapped Children Act that established ser-
vices for children from birth to 3 years old. Recognizing the critical role
of families in their child’s development, services under this part of the
law are provided to the family, not just the child, through the IFSP. Each
state has a designated lead agency such as its Education Department or
Department of Health that manages Part C services. These lead agencies
develop state regulations and guidelines that are aligned with Federal
Regulations and the spirit of family-centered practice. They also have
a structure for funding services and oversight of early intervention
providers.
 Gallegos et al.  279

Whereas the IFSP is unique to the United States, several other coun-
tries have embraced principles associated with IDEA Part C and the IFSP.
For example, the British Columbia Early Hearing Program in Canada has
established an IFSP process that is similar in many ways to the process in
the United States with some differences in the developmental domains and
the assessment process. The United Kingdom has a technical assistance
document for families and early intervention providers that mirrors the
IFSP (National Children’s Bureau, n.d.). Many early Interventionists in
Germany are encouraged to provide family-centered services; however,
there is no coordinated system similar to the IFSP throughout the coun-
try (M. Hintermair, personal communication, December 6, 2013). Many
early intervention programs in South Africa use family-centered and
home-based principles modeled after the SKI-HI program (P. Pittman,
personal communication, November 26, 2013).
The science of early intervention may be best known through the
work of Dunst, Trivette, and Deal (1988) and Trivette, Dunst, and Hanby
(2010) who describe a family-systems model. This approach focuses on
the interrelationship of the family’s concerns and priorities, family mem-
bers’ abilities and interests, the family’s supports and resources, and
capacity-building/help-giving practices of the interventionist. These con-
cepts are reflected in Part C of the Individuals with Disabilities Education
Act (IDEA), which requires the following:
A family-directed assessment of the resources, priorities, and con-
cerns of the family and the identification of the supports and services
necessary to enhance the family’s capacity to meet the developmen-
tal needs of the infant or toddler [CFR 303.321(a)(ii)(B)]
. . . the development, review, and implementation of an individual-
ized family service plan or IFSP developed by a multidisciplinary
team, which includes the parent (CFR 303.340).
The responsibility for implementing family-centered practices for
young children who are deaf or hard of hearing is evident at both the
state and family levels. At the state level it is the lead agency that cre-
ates a system, guidelines, and networks and establishes a tone for quality
family-centered practice as is the intent of and is prescribed by the policy
280  Individualized Family Service Plans

set forth by IDEA Part C. At the family level, a service coordinator makes
first contact with a family, organizes the team, and ensures that all com-
ponents of the IFSP process have been addressed. The service coordinator
should have specific and specialized information, experience, and knowl-
edge regarding early development and learning including language and
communication for young deaf or hard-of-hearing children (JCIH, 2013).

Requirements of the IFSP
Interdisciplinary IFSP teams must include required components and meet the
specified timelines in the Federal Regulations for IDEA [CFR 303.342 (a) (b)].
Emily’s family has gone through the annual IFSP process twice. The initial IFSP
occurred within the required 45-day timeline after Emily was determined to
be eligible for services. At the first IFSP meeting the family was mostly con-
cerned about language and communication and family outcomes centered on
gathering information and learning how to communicate with their daughter.
The next IFSP meeting was 6 months later to review Emily’s progress. At this
meeting the team, including her family, commented that Emily was very atten-
tive to visual information, and they agreed that language and communication
outcomes using American Sign Language (ASL) should continue. Her parents
noted that Emily was also beginning to notice sounds in the environment, and
the team recommended increasing the time she wore her hearing aids. At their
1-year IFSP meeting, outcomes were revised and expanded to include increas-
ing the family’s skills in ASL, interacting more with signing deaf adults, and
encouraging Emily’s awareness of sound in her environment.
Individuals participating at Emily’s IFSP meetings included all those
required by the IDEA regulations (IDEA Early Intervention Program
for Infants and Toddlers with Disabilities Regulations, 34 C.F.R. pt.
303 2011) and requested by her family. Present at the meeting were her
parents, her grandmother (as requested by Emily’s parents), Emily’s
service coordinator, who in this case is the early childhood educa-
tor for children who are deaf or hard of hearing, a physical therapist,
and Emily’s teacher from the play group at the school for the deaf
that Emily has been attending. The physical therapist and Sandra, the
early childhood educator and service coordinator, conducted Emily’s
initial evaluation and on-going assessments. Along with the family,
 Gallegos et al.  281

service coordinator, and the provider(s) of the early intervention ser-

vices, it is a requirement that the specialist(s) directly involved in the
evaluations and assessments are included in the meeting to develop the
initial IFSP and each subsequent annual meeting to review the IFSP
[National Information Center for Children and Youth with Disabilities
(NICHCY), 2014]. The content of an IFSP is outlined by IDEA (CFR
303.344 et seq.) and includes information about the child, family rou-
tines, outcomes, services, and transition. Special considerations for lan-
guage and communication in IDEA Part C are not specifically described
as they are in IDEA Part B for children who are school age, but it is clear
that the law requires that necessary services must be provided to meet the
unique needs of the child. It is incumbent on the IFSP team to consider
what is unique about Emily who is a child who is deaf when develop-
ing her service plan. This means bearing in mind Emily’s communica-
tion needs and opportunities for direct communication with peers and
adults [American Speech-Language-Hearing Association (ASHA) and
the Council on Education of the Deaf (CED) Joint Committee, 2006].
Additionally, the IFSP team and the service coordinator should be
aware of related services and regulations in Part C of IDEA that influence
how services are provided to children who are deaf or hard of hearing:

• Audiology services [34 CFR 303.13(b)(2)]

• Limitations on responsibility related to optimization of the cochlear
implant [34 CFR 303.16 (c)(1)]
• Sign language and cued language services [34 CFR 303.13(b)(12)]
• Assistive technology device and service [34 CFR 303.13(b)(1)(i)(ii)]
• Native language including mode of communication for an individ-
ual who is deaf or hard of hearing [34 CFR 303.25 (a)(b)]
• Infant or toddler with a disability [34 CFR.21 (a)(1)(2)]
• Natural environments (34 CFR 303.26; 34 CFR 303.126)
• Qualified personnel [34 CFR 303.13(c)]
• Special instruction [34 CFR 303.13(b)(14)]

The requirements in the law provide a road map for the IFSP pro-
cess. Emily’s team has followed the IFSP guidelines and has applied
282  Individualized Family Service Plans

the principles and practices of a family-centered approach. As a result,

Emily’s family knows the intended essence of an IFSP, which empha-
sizes family-determined outcomes in collaboration with an interdis-
ciplinary team of knowledgeable professionals. Their process includes
building a plan together that utilizes the resources available in Emily’s
family and community. Documentation of the IFSP process and review
of their rights are important parts of the process. Emily’s family is look-
ing forward to a dynamic dialogue in which Emily’s progress, next
steps, and freshly crafted outcomes will highlight new benchmarks in
her development.

THE IFSP PROCESS

Family and Child Outcomes

Initial concurrent steps in building child and family outcomes are
illustrated in Figure 9.1. A  “routines-based interview” with the fam-
ily (McWilliam, 1992; McWilliam, Casey, & Sims, 2009)  as part of the
IFSP process gathers information about the family’s daily life, family

-Routines based
assessment;
-Child evaluation Family priorities,
and assessment; concerns and IFSP outcomes
-Language and resources
communication
events

Figure 9.1  Initial steps for building child and family outcomes. Adapted from Jung and
Grisham-Brown (2006).
 Gallegos et al.  283

and community resources, and circles of support (McWilliam, 2010).

Access to language and communication is critical to the development
of an infant or toddler who is deaf or hard of hearing. A dialogue with
the family regarding when and what kind of communication is occur-
ring during their daily routines will help the family take advantage of
opportunities to include and connect the child with the family and other
caregivers and facilitate language development. These “communication
events” are essential to identifying meaningful language and communi-
cation outcomes and strategies for the child and family. The team will
also gather and review current developmental information from assess-
ment data that includes input from her family and other interdisciplinary
team members. (See Chapter 7, Developmental Assessment.) The team will
carefully consider her rate of progress across domains and whether it is
sufficient given parental expectations and Emily’s potential.

Collecting Family Information

Sandra, as the service coordinator, met with Emily’s family prior to the
IFSP meeting to review their priorities and collect additional family infor-
mation. Emily’s family identified the following priorities: (1) developing
communication in both visual (ASL) and spoken language, (2) address-
ing concerns about Emily’s motor development, (3)  reviewing Emily’s
progress over the past 6  months, and (4)  obtaining information about
preschools. At the initial IFSP and as a review for this IFSP Sandra asked
the family to update information about their everyday routines, activi-
ties, places, and people in their lives. In addition to family priorities, she
also asked about their current concerns, what they were worried or won-
dering about, and what new resources, such as family, friends, and other
services or organizations, they found helpful since the first IFSP meet-
ing. She also revisited the routines-based interview [McWilliam, 1992;
McWilliam, Casey, & Sims, 2009; New Mexico Family Infant and Toddler
Program (NM FIT), 2011] they did together at the first IFSP meeting and
asked the family how Emily’s typical day or family routines have changed.
(See Recommended Resources in this chapter for more information on
the routine-based interview.)
284  Individualized Family Service Plans

Emily’s family routines and resources changed since the first IFSP pro-
cess, and they decided to update their illustration of their circles of sup-
ports (NM FIT, 2011). See Figure 9.2. Emily’s parents drew themselves,
Emily, and her brother in a circle at the center of the page. They drew
an additional circle around them that included Emily’s grandparents,
neighbors, and friends. New to their illustration since the first IFSP were
parents who have deaf children the same age as Emily, a playgroup at
the school for the deaf, their audiologist, Emily’s physical therapist, their
Deaf Mentor, and Sandra. Emily’s parents and Sandra discussed how this
new information would be useful during the IFSP meeting.
Emily’ parents and Sandra also discussed the language and commu-
nication events in Emily’s and her family’s daily routines and how they
can continue to make these more accessible to Emily to support her lan-
guage development. When Sandra used a routine-based assessment to
obtain information about Emily’s typical day, that is, who she interacts
with, where, and what she does (McWilliam, 1992; McWilliam, Casey, &

Emily, Emily’s parents &

brother

Emily’s grandparents,
neighbors & friends
Other parents with deaf
children Emily’s age,
playgroup at the school
for the deaf, Emily’s
audiologist, Emily’s
physical therapist,
Emily’s deaf mentor,
Emily’s early
intervention provider

Figure 9.2  Emily’s circles of support.

 Gallegos et al.  285

Sims, 2009; NM FIT, 2011), Sandra also asked what words and language
concepts were connected to these events.
Emily’s family also received services from a Deaf Mentor, another
member of the interdisciplinary team. (See Chapter 5, Collaboration with
Deaf and Hard-of-Hearing Communities.) The Deaf Mentor meets with
Emily and her family on a weekly basis to share her experiences growing
up and being a part of her own family’s routines. These conversations
have raised the family’s awareness of how many language opportunities
there are throughout the day and have helped them set high expecta-
tions and identify meaningful language outcomes for their family and
for Emily.

Collecting Child Information

United States federal regulations under IDEA Part C require that the fol-
lowing developmental domains be addressed in a child’s IFSP: (1) physical
development (including vision, hearing, and health status), (2) cognitive
development, (3) communication development, (4) social or emotional
development, and (5) adaptive development. Some states may specify
sensory motor, gross and fine motor skills as an additional required
domain. (See Chapter 7, Developmental Assessment.)
Emily received an initial evaluation when she was referred to early
intervention when she was 6 months of age and was determined to be eli-
gible for Part C services. Since then, her team has been conducting assess-
ments to track her progress and help determine outcomes. At each IFSP
meeting, her team has considered her current developmental level in each
of the required domains. Her levels are described functionally as strengths
and needs in relation to what is working well and challenges related to her
family’s everyday routines and activities. Strengths describe what interests
and motivates Emily and describe Emily’s ability to navigate and partici-
pate in all aspects of her everyday life. Areas of needs that include situa-
tions that are challenging for Emily or her family are also noted.
For example, under the socioemotional domain, one of Emily’s
strengths is that she has a very outgoing personality and loves to interact
with her cousins. Her parents report that Emily often grabs her cousin’s
286  Individualized Family Service Plans

toys causing the other children to become upset with her. Her family
describes a need to improve their own communication skills and strate-
gies to help Emily improve her play skills with other children. Although
Emily’s family knows that 2 year olds are still learning how to share, they
recognized the advantage of having better ASL skills to explain why she
cannot take another child’s toy, redirect her, or help her learn to wait for
her turn. In the communication and language domain, Emily’s strength
is that she uses a variety of one-word utterances in sign language to get
what she wants. Under the needs section the family explains that when
her family is not quite sure what she is trying to communicate to them,
Emily becomes frustrated and throws a temper tantrum.
Emily’s family is concerned that she has a 6-month delay in language.
Through discussions with their service coordinator, Sandra, they are aware
of the unacceptable history of low expectations for children who are deaf
(National Agenda, 2005) and the research that shows that deaf children who
are accessing specialized early intervention by 6 months of age can reach
the same developmental trajectory as their hearing peers (Yoshinaga-Itano,
Coulter, & Thomson, 2001). They are anxious to do everything they can
to make sure that Emily reaches her potential in language development.
Under the area of strengths on the IFSP, the team documents that Emily is
using beginning ASL to communicate and has some resources to help her
learn language. In the needs area, they mention their desire for Emily to
have more access to language in ASL, as well as note their need for strate-
gies to help Emily wear her hearing aids more consistently.
Emily’s IFSP team is responsible for considering how Emily is doing
in relation to state and federal requirements in three areas: (1) posi-
tive socioemotional skills (including positive social relationships), (2)
acquisition and use of knowledge and skills (including early language/
communication), and (3) use of appropriate behaviors to meet her
needs. The United States federal government measures the effectiveness
of early intervention and early childhood special education programs
for children and families by collecting information on child progress
through the “Early Childhood Outcomes (ECO)” process. See the Early
Childhood Technical Assistance Center website under Recommended
Resources. Emily’s current abilities in the three areas mentioned above
 Gallegos et al.  287

will be agreed on by families, caregivers, and the professionals working

with Emily based on the results of assessments and observations of her
progress. All identifying information will be confidential and will not
shared outside of their state’s Part C program.

Developing Outcomes
The team will pull together information obtained from the assessments
that consider all areas of Emily’s development, the information shared by
her family, as well as observations of Emily by members of the interdisci-
plinary team, including the family. The family will prioritize its goals and
concerns, describe, in its own words, what they would like to see for their
family and child as a result of early intervention services over the next
6 months, and indicate how they will know that the outcomes have been
met. Examples of outcome statements for Emily and her family might
include the following:

• By December, Emily will use two words in ASL to tell us what she wants,
like “ball + classifier (indicating size),” “two crackers,” “duck book.”
• By December, we (Emily’s parents) will learn and use signs for helping
Emily learn to share like “my turn, your turn,” “where’s your doll?”,
“wait 2 minutes,” “I like how you share,” “not yours,” “waiting is hard.”
• By Emily’s third birthday, she will run without falling most of
the time.
• By April, we (Emily’s parents) will learn about the eligibility process
for transition to public school preschool and opportunities for pri-
vate preschools.
• In 3 months, Emily will increase the use of her hearing aids to all day
before her nap and in 6 months to all waking hours.

STRATEGIES AND SERVICES

The team, including Emily’s family, determined strategies for support-

ing progress toward Emily’s outcomes. They decided who was the most
appropriate person or persons to implement each identified strategy and
288  Individualized Family Service Plans

when and where these activities would occur, such as during bath time,
meals, or in the car (NM FIT, 2011). The team also decided which mem-
bers of the interdisciplinary team would be responsible to help achieve
the outcomes. Some examples of strategies that might appear in Emily’s
IFSP are listed below:

• The Physical Therapist (Maria) and the Early Childhood Educator

(Sandra) will make joint home visits to work on Emily’s running and
add language that can be used during the running activities at her
home or in the park nearby.
• The Early Childhood Educator (Sandra), the Deaf Mentor (Alana),
and Emily’s family will identify vocabulary and the related signs they
need to help Emily learn to share; they will model these in play ses-
sions with Emily’s cousins at their home.
• The Early Childhood Educator (Sandra) and the Speech Language
Therapist (Rebekah) will identify strategies for encouraging Emily
to listen including identifying household sounds and encouraging
her vocal word approximations.
• The Deaf Mentor (Alana) and the Speech Language Therapist
(Rebekah) will visit the center-based program at the School for
the Deaf to see what themes they are covering and help the family
acquire new sign concepts and spoken words that Emily is using in
her play group.
• The Deaf Mentor (Alana) and the Early Childhood Educator
(Sandra) will model how to expand Emily’s signed and spoken
words to two-word sentences during snack and play time at home.

Natural Environments
Natural environments for infants and toddlers as described by Part C
of IDEA “include the home, and community settings in which children
without disabilities participate” [Sec. 632(4)(G),(H)]. IDEA also provides
flexibility for services in other settings if the IFSP team and the family
determine that a child’s outcomes cannot be met in a “natural environ-
ment.” An IFSP team should not be constrained to implement child out-
comes in settings they believe will not support progress. Instead they
 Gallegos et al.  289

should document and explain why certain services should be provided

in other settings that may be more conducive to promoting the child’s
outcomes. In light of the discussion of Emily’s language outcomes and
what is known about the critical need for children who are deaf or hard
of hearing to have access to language, it would be helpful to consider
environments that allow Emily to fully participate and are natural to her.
Natural environments for infants and toddlers who are deaf or hard
of hearing are settings in which the child has direct communication with
peers and adults through the language and communication modality(ies)
that is accessible to the child such as ASL or spoken English (Lederberg,
Schick, & Spencer, 2013). This can occur in a range of settings in which
there are adults who can fluently communicate in that language and
in which peers are acquiring the same language (ASHA-CED Joint
Committee, 2006). The ability to communicate fully with adults and
peers in the language that is most accessible to the child facilitates lan-
guage, cognitive, and socioemotional development. It is natural for a
child to access the environment so that she can participate as a member,
not a visitor, of her family and community (Antia, Stinson, & Gaustad,
2002). The phenomena of “relegated periphery” (Hopper, 2011)  occurs
when a child cannot access the conversations that are happening around
her and without choice is on the outside of the events of her surround-
ings. A well-constructed IFSP will provide the resources and strategies to
help Emily be a full participant in her everyday encounters with signifi-
cant people in her life and have access to information and opportunities
that all children need and deserve.
Emily’s interdisciplinary team agreed that in order for Emily to reach
the language outcomes identified in her IFSP and begin to narrow her
language delay, she needed to interact more frequently with children and
adults who use ASL. The family decided that in addition to services pro-
vided in the home by their interdisciplinary team, Emily should attend a
playgroup at the school for the deaf four mornings each week in which
all the teachers and children use ASL. They also noted that the speech
and language specialist at the school would work closely with the teach-
ers and Emily to support her developing listening and spoken language
skills. The team documented this in the IFSP along with a justification.
290  Individualized Family Service Plans

Although Emily’s IFSP team did not recommend more intensive spoken
language support at this time, it is important to note that children who
are deaf or hard of hearing and are developing listening and spoken lan-
guage as their primary mode of communication rather than ASL may
need a specialized setting in which the child has access to other children
and adults who use spoken language and to trained facilitators of listen-
ing and spoken language.

Home Visits and Daily Routines

Home visits by one or more early intervention specialists provide oppor-
tunities to support family, primary caregivers, and child interactions
and to promote other identified child outcomes in an environment that
is both comfortable and familiar to the child and family. Some families
prefer settings other than their home for family–child sessions such as
the library, community, or childcare center. Visits with families can take
place at the park, grocery store, or even Grandma’s. The setting itself is
less important than the family’s comfort level and the opportunities the
setting provides to help families develop the skills they need to embed
learning goals into their family routines.
Because young children learn from experiences naturally embedded
in their routines at home and in their community, the team considered
opportunities for Emily’s family to incorporate strategies for developing
targeted skills into these environments. When a child is deaf or hard of
hearing, communication access is a key consideration for all aspects of the
child’s life. Activities that happen many times a day in a toddler’s life, such
as eating, diapering, or getting ready to go somewhere, are natural oppor-
tunities for families to incorporate language-learning strategies such as
expanding a child’s utterance. Adults might use a strategy called “self-talk”
that provides children with opportunities to see and/or hear adult thought
processes. Other strategies that are easily incorporated into daily routines
include expectant pauses and introducing new vocabulary and concepts.
Expectant pauses are intentional pauses in conversation used by adults to
encourage children to fill in words, to complete a sentence, or to give chil-
dren time to process the language they see or hear and then respond. Daily
 Gallegos et al.  291

activities such as cooking, cleaning, tidying up, laundry, and dishes are all
opportunities to use strategies that promote language, cognitive, socioemo-
tional, and motor development. Embedding outcomes in daily routines in
the home make learning a natural part of the child’s and family’s everyday
life rather than a separate additional activity.
Research and practice literature agree on four overarching components
of the home visiting model that support child outcomes (Keilty, 2008).
These are (1) context within family’s routines, (2) child engagement in fam-
ily activities, (3) caregiver engagement in home visits, and (4) caregiver
competence and confidence. Keilty (2008) takes each of these components
and suggests that early intervention specialists use guiding questions to
regularly reflect on whether these characteristics are adequately incorpo-
rated in their interaction with families. The checklist poses questions such
as “Does the home visit occur within the same routine activities where
the caregiver will use the strategies between home visits?” and “Are home
visits designed so that it depends on caregiver engagement for home visits
to occur?” (Keilty, 2008, p. 37). Early intervention professionals might use
a checklist such as the one created by Keilty (2008) to support their own
reflective practice. They might also employ the support of a mentor or
supervisor to provide feedback on their consistent use of these compo-
nents to promote effective service delivery to families.
Families may benefit from services provided through video technol-
ogy. Recently, tele-intervention, home visits conducted through video
conferencing, has been explored as a way to offer more consistent spe-
cialized services for families and children who live far from available
early intervention providers (Behl, Blaiser, White, & Callow-Heusser,
2013). Distance learning technologies have also been used successfully to
provide families with access to sign language services and opportunities
to connect with deaf and hard-of-hearing adults and other families with
deaf children (Hopkins, Keefe, & Bruno, 2012).

Developmentally Appropriate Practice

Additional factors that impact the quality and effectiveness of home
visits are Developmentally Appropriate Practice (DAP) and culturally
292  Individualized Family Service Plans

responsive services [National Association for the Education of Young

Children (NAEYC),  2009]. A  provider who understands early stages
of development and how to facilitate the next step in learning is key to
partnering with families and guiding families in ways to use strategies
that are appropriate to their child’s age and developmental level (Knoche,
Kuhn, & Eum, 2013). Knowing what is developmentally and individually
appropriate for Emily helps her interdisciplinary team and her parents
and caregivers select activities that are motivating and sufficiently chal-
lenging to keep Emily involved without frustrating her.
Programming for babies and toddlers ages birth to 3 years old is dif-
ferent than preschool because the developmental needs of babies and
toddlers are unique and substantially different than those of preschool
aged children. Emily’s early intervention team has expertise in the devel-
opment of infants and toddlers. Sandra and Alana, the deaf mentor,
have specialized dispositions, knowledge, and skills for infants and tod-
dlers who are deaf or hard of hearing. (See Chapter 1, What Every Early
Intervention Professional Should Know.) This specialized training allows
the team to draw on knowledge in areas such as contemporary infant
development theory including brain development and bilingual develop-
ment, infant bonding and mental health, infant and toddler development
across domains, and the influence of culture on early development.
Specific to young children who are deaf or hard of hearing, there must
be a service provider on the team who has expertise in understanding the
role of auditory, visual, cross-modal perception and processing related to
development (JCIH, 2013). Developmentally appropriate practices take
into account what is known about child development and learning, what
is known about the unique needs, strengths, and interests of each child,
and what is known about the cultural and social environments in which
each child lives (NAEYC, 2009).
Early intervention specialists must also be mindful and knowledge-
able about how each child is nurtured within his or her family’s culture
and how early intervention services interact in this dynamic if they are
to be effective within the context of the family’s home and community.
“The influence of culture on the rearing of children is fundamental and
encompasses values, aspirations, expectations, and practices” (National
 Gallegos et al.  293

Research Council and Institute of Medicine, 2000). Providing culturally

competent services requires commitment from the program leadership
and informed specialists. Table 9.1 outlines examples of how the parent–
infant child program at the New Mexico School for the Deaf operational-
izes the five essential elements for a culturally competent system of care
listed by Hepburn (2004).

Community-Based Resources
The interdisciplinary team will build on the resources and services that
the family is already accessing and propose additional information that
the family might consider pursuing to support the outcomes identified
through the IFSP process. These may include (1) Deaf Mentor Programs,
(2) family-to-family support, (3) family learning opportunities, (4) listen-
ing and spoken language services, and (5) play groups.
Deaf Mentor programs promote the family’s understanding and appre-
ciation of being deaf or hard of hearing. (See Chapter 5, Collaboration
with Deaf and Hard-of-Hearing Communities.) Opportunities are avail-
able in some places in the form of Deaf Role Model Programs (Abrams
& Gallegos, 2011) or Deaf Mentor Programs (SKI-HI, 2001). Families
may be able to access ASL instruction or literacy instruction such as the
Shared Reading Program. See the Shared Reading website at Gallaudet
University in Washington, DC listed in the Recommended Resources in
this chapter. If a formal Deaf Mentor program is not available in a family’s
community, the IFSP team can support the family in networking with
members of the deaf community. State and private schools for the deaf
are a valuable resource for deaf community gatherings and offer cultural
events that are open to the public such as theater and sports activities.
Another important opportunity for families is meeting other families
to observe their interactions with their children, obtain valued resources,
and receive as well as provide socioemotional support. Emily’s family
included other families, both deaf and hearing, in their circles of support,
reflecting the value they placed on these connections. Family-to-family
interaction provides an avenue to reassurance and feelings of efficacy
(Ainbinder et al., 1998). Similar to all families, those who are raising a
child who is deaf or hard of hearing need other families to check in with,
294  Individualized Family Service Plans

Table 9.1  Culturally Competent System of Care: Examples from the

Parent–Infant Child Program at the New Mexico School for the Deaf a

Essential Elements New Mexico Parent–Infant

(Hepburn, 2004) Child Program Strategies

Value, accept, and respect Develop the Individual Family Service Plan
diversity (IFSP) based on family routines, priorities,
and resources.
Incorporate a strengths versus a deficit
approach when exploring family resources.
Facilitate the leadership role of family
members in making decisions for their
child.
Have the capacity, Collaborate with providers who serve a
commitment, and particular cultural/ethnic group or are of
systems in place for the same culture as the family and ask for
cultural self-assessment guidance and feedback before and after a
home visit or IFSP meeting.
Be conscious of the Use cultural brokers for initial meetings with
dynamics inherent family.
when cultures interact
Have continuous Hire providers that represent various cultural/
expansion of ethnic groups.
institutionalized Participate in professional learning
cultural knowledge opportunities to increase cultural
knowledge and appropriate practice.
Have developed service Provide early educators who speak the family’s
delivery models, modes, language.
and adaptations to Provide interpreters at IFSP meetings.
accommodate diversity
Provide written information in the family’s
language.
Provide early educators who live in the
family’s community.
Adapt home visit content to include cultural
events and family traditions.
Adapted from Hepburn (2004) by the New Mexico School for the Deaf. Used with
a

permission.
 Gallegos et al.  295

to validate their thoughts about the best way to support their child, and
to continue to build their circle of support. The IFSP team should explore
the availability of formal parent-to-parent support programs. Informal
networks can also be encouraged. (See Chapter 3, Families: Partnerships
in Practice.)
In parent–child playgroups children learn with and from other chil-
dren and families establish connections with specialists, deaf and hard of
hearing adults, and other families. Playgroups may be started by families
or be a formal service provided by the local school or program for deaf
children or an early intervention agency. The playgroup Emily will be
attending is at the school for the deaf where there will be many deaf and
hard-of-hearing children and adults using ASL like Emily. There will also
be children who are learning to listen and use spoken language. Emily
will receive services to support both her development in ASL and to help
her develop her listening and spoken language skills. Oral school pro-
grams that focus exclusively on the development of listening and spo-
ken language skills are available in many communities and may provide
parent–infant and center-based toddler and preschool programs (Option
Schools Inc., n.d.).
Learning opportunities for families will vary from community to
community but may include family conferences, sign language classes,
and other events with guest speakers. Family organizations such as the
Alexander Graham Bell Association for the Deaf and Hard of Hearing,
American Society for Deaf Children, and Hands & Voices have websites
that post learning opportunities and ways for families to connect with
other families who have deaf or hard-of-hearing children.

Interdisciplinary Teams
At every stage of the process, eligibility, outcome development, service
provision, and transition, interdisciplinary practice provides the neces-
sary resources to develop and implement the IFSP and monitor progress.
During Emily’s first evaluation, Sandra, as the provider who has expertise
in working with children who are deaf or hard of hearing, conducted
her language and communication assessment while a speech language
296  Individualized Family Service Plans

pathologist and a physical therapist looked for any additional charac-

teristics that might impact her development. Collaboration across dis-
ciplines and early intervention agencies is critical in making the most
of resources available to families and is especially important when a
child has other developmental and/or medical concerns. About one out
of three children, born deaf or hard of hearing, has additional single or
multiple medical issues at birth (Chapman et al., 2011).
During the initial assessment of family priorities and concerns, Emily’s
family was concerned that Emily was not getting enough to eat, because
she was not tolerating milk. Sandra brought in a nutritionist to further
discuss these concerns with Emily’s parents. If her family’s primary con-
cern had been health-related care or social services, Sandra might have
suggested that the service coordinator be someone who has more exper-
tise in one of those areas. Sandra would then have worked with the family
and interdisciplinary team as the specialist for children who are deaf or
hard of hearing.
Through collaboration, professionals learn which providers carry the
specific expertise to best address each family’s concerns and their child’s
unique needs. This also allows various programs and professionals to
understand the best “match” between families, children, and specialists,
and minimize confusion of roles or duplication of services. Through col-
laboration families are able to manage the number of visits by reducing
the numbers of providers or requesting co-visits. Co-visits encourage
providers with different areas of expertise to share strategies with each
other and with families to support outcomes for children. For example,
Emily’s team agreed that the physical therapist and Sandra would visit the
family together so that language strategies could be incorporated into her
motor activity of running. A shared home visit and ongoing communica-
tion among providers and family members allow providers to learn from
each other’s specialized skills and integrate skill building in a natural way
for the child.
Sandra maintains regular communication and has a strong working
relationship with other educational, medical, and health care profession-
als involved in Emily’s development. Sandra and Emily’s audiologist work
together to answer questions Emily’s family has about her amplification,
 Gallegos et al.  297

troubleshoot any problems with her hearing aids, and monitor her progress
in listening skill development. Sandra also collaborates with the playgroup
to help connect concepts for Emily between the playgroup and home.
Collaboration is crucial in facilitating the early referral of children
who are deaf or hard of hearing to appropriate early intervention ser-
vices. Effective relationships with community agencies helps experts such
as Sandra raise awareness of the urgency to provide children who are deaf
or hard of hearing with early and rich exposure to language.

TRANSITION PLANNING

Based on Emily’s family’s interest in exploring preschools, the team will

consider what is available in their community and what Emily’s parents
believe would be the best preschool setting for Emily. They will also want
to begin to discuss the transition and eligibility process for accessing ser-
vices through Part B of IDEA services from the public schools when she
is 3 years old.
At the beginning of their journey, Emily’s parents thought that she
would attend the same daycare as her older brother. But as they have
learned more about preschool services and gained understanding about
the importance of communication access from Sandra and the deaf
adults they have met, their thinking has shifted. They are involved in a
playgroup with other families of children who are deaf or hard of hear-
ing. They understand that there are many opportunities in their com-
munity: in-home day care, private child care centers, Head Start, public
school programs, the preschool program at their state school for the deaf,
and combinations of these services. They are interested in visiting these
programs with Sandra, and have created a list of questions and have a
checklist (DeConde Johnson, Beams, & Stredler-Brown, 2005)  to help
them consider what types of support might be available to Emily in each
of the settings, keeping in mind communication access, peers, specialized
service providers, and Emily’s individual learning style.
United States Federal regulations require that states have policies and
procedures that ensure that a transition plan is in place not fewer than 90
298  Individualized Family Service Plans

days and not more than 9 months before a toddler’s third birthday [CFR
303.209 (d) (2)]. Each state establishes guidelines to meet these minimum
standards so it is important for providers to refer to their state regulations
and procedures for direction. Emily’s team is gearing up for her transition
plan. It will include transition planning requirements such as informing
her parents about preschool options, providing opportunities for them to
visit and gather information about preschools, referring her to the Part B
public school program, and setting up a transition conference.

SUMMARY

Professionals and families enter into a partnership when there is mutual

respect and exchange of information and professionals view fam-
ily members as experts on their children. Families with higher levels
of self-efficacy experience better outcomes for their children (Dunst,
Trivette, & Hamby, 2007). Emily’s IFSP team is an example of an effec-
tive collaboration between professionals and family members that brings
together the family’s knowledge of their child, their community, and
culture with the specialized knowledge and expertise of providers. This
results in the implementation of an IFSP plan that utilizes resources in
the community, reflects the family’s priorities and concerns, and takes
advantage of the specialists’ knowledge of developmentally appropriate
programming while addressing the unique needs of children who are
deaf or hard of hearing
Emily’s IFSP team is aware of best practices related to early interven-
tion in general, and specifically for children who are deaf or hard of hear-
ing (JCIH, 2013). Their lesson plans for home visits and family-centered
play-based playgroups are guided by assessment, focused on next steps in
language, literacy, and general developmental domains with specific adap-
tations for Emily’s individual learning style and pace. They have revised
their strategies and services in response to Emily’s progress and her fam-
ily’s priorities and concerns. They have delved into what a natural learning
environment is for Emily and have identified strategies that can be embed-
ded in their family routines and utilized resources available through the
 Gallegos et al.  299

community. As a result, Emily and her family have opportunities to work

with and learn from Deaf adults, as well as other families who have chil-
dren who are deaf or hard of hearing. They have been responsive to the
family’s values and beliefs and responded to the family’s concerns about
Emily’s delay in language and their high expectations for her progress.
Because family circles of support are dynamic and evolve, the IFSP
team, including the family, continues to seek a range of resources at vari-
ous points in time. Collaboration among professionals and families is
critical to quality service delivery and concomitant achievement of child
outcomes. At every stage of the process, interdisciplinary practice will
provide the necessary resources to develop the IFSP and to carry out the
implementation of the plan.
To develop an appropriate IFSP and attain positive outcomes for both
the child and family, it is essential that a service provider with specialized
skills in working with infants and toddlers who are deaf or hard of hearing
is on the interdisciplinary team. All specialists need to be familiar with
the factors that constitute an appropriate early intervention program and
best practices for implementation (JCIH, 2013). Every family deserves
comprehensive information and support from the interdisciplinary team.
Careful monitoring of the child’s progress coupled with family-centered
practices that honor family priorities and concerns guide professionals in
ensuring the delivery of effective early intervention services.

SUGGESTED ACTIVITIES

1. Observe the amount and type of communication between a baby or tod-

dler who is not deaf or hard of hearing and his or her family. Describe the
amount of incidental and direct language exposure a child typically has
and what strategies and services a child who is deaf or hard of hearing
may need to access these same opportunities.
2. Practice conducting a routines-based interview with someone you know
who has young children. Use a form required in your state’s IFSP form.
If your state does not provide such a form, access The Routines-Based
Interview Report Form from The Early Childhood Technical Assistance
Center http://www.siskin.org/downloads/RBI_Report_Form.pdf.
300  Individualized Family Service Plans

3. Describe what you learned from this interview process and reflect on how
you would use this information for an IFSP with a deaf and hard-of-hearing
infant or toddler.
4. Find out who the lead agency for Part C is in your state and review its website
for resources, services, and guidelines in providing early intervention ser-
vices including how they collaborate with the state school for the deaf and
other programs that provide services for infants and toddlers who are deaf.
5. Use Keilty’s (2008) Home Visiting Principles Checklist to reflect on your
practice. If you are not seeing a family, arrange to observe a home visit.
Identify a strength of your practice and an area that might be improved.

RECOMMENDED RESOURCES

1. Alexander Graham Bell Association for the Deaf and Hard of Hearing
The Alexander Graham Bell Association has resources and information
for families and professionals about developing listening and spoken
language for individuals who are deaf or hard of hearing. http://listen-
ingandspokenlanguage.org/Who_We_Are/.
2. American Society for Deaf Children (ASDC)
ASDC is a “parent-helping-parent” network. Its quarterly publication fea-
tures articles pertinent to families and providers working with infants
and toddlers. Words: A Passport to the World (Fall 2010 Edition) sum-
marizes language development and the importance of accessibility in
the early years. http://deafchildren.org/join/endeavor-magazine/.
3. Boystown Press
Boystown Press disseminates books, DVDs, and other material for fami-
lies of children who are deaf, hearing, or hard of hearing. The Home
Team: Early Intervention Illustrated DVD focuses on best practices for
family involvement and family-centered early intervention. http://www.
boystownpress.org/index.php/deaf-hard-of-hearing.html.
4. Early Childhood Technical Assistance Center (ECTA)
The ECTA provides technical assistance, develops and disseminates
professional development resources, and supports integration of out-
come measures. http://ectacenter.org/eco/.
5. Early Intervention Strategies for Success Blog
Early Intervention Strategies for Success Blog is a format for discussions
about early intervention with strategies and information for implement-
ing recommended practice.
 Gallegos et al.  301

http://veipd.org/earlyinter vention/traditional-vs-collaborative-ei-
visits-whats-the-difference/.
6. Hands & Voices
Hands & Voices is a parent-driven organization supporting families of
children who are deaf or hard of hearing. The Preschool/Kindergarten
Placement Checklist for Children Who Are Deaf and Hard of Hearing
was written to help parents when considering school placement
opportunities for their child. http://handsandvoices.org/pdf/
TransRevised0107.pdf.
7. HOPE Inc.
The HOPE Company distributes material in English and Spanish for use
in family-centered early intervention programs for children who are
deaf or hard of hearing and deaf-blind. The SKI-HI Curriculum con-
tains information and activity sheets to use with families. http://
hopepubl.com/proddetail.php?prod=103.
The Deaf Mentor Curriculum focuses on American Sign Language for
families, early visual communication, and Deaf Culture.
http://hopepubl.com/products.php?cat=5&pg=2.
8. The National Center for Hearing Assessment and Management (NCHAM)
NCHAM is a National Resource Center for the implementation of effec-
tive Newborn Hearing Screening and Intervention systems. The sec-
tion on early intervention provides resources and information to
parents and professionals.
http://www.infanthearing.org/earlyintervention/index.html.
9. Laurent Clerc National Deaf Education Center
The Laurent Clerc National Deaf Education Center provides resources
and information for parents and professionals on how to improve
the quality of education of children who are deaf or hard of hear-
ing throughout the United States. The Center is housed at Gallaudet
University. http://www.gallaudet.edu/clerc_center/welcome.html.
10. Shared Reading Project
The Shared Reading Project is designed to teach parents and caregivers
how to read to their deaf and hard-of-hearing children using American
Sign Language, and to use strategies to make book sharing more
effective.
http://www.gallaudet.edu/clerc_center/information_and_resources/
info_to_go/language_and_literacy/literacy_at_the_clerc_center/wel-
come_to_shared_reading_project.html.
302  Individualized Family Service Plans

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Marquis, J. G., & Santelli, B. B. (1998). A qualitative study of parent to par-
ent support for parents of children with special needs. Journal of Pediatric
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American Speech-Language-Hearing Association (ASHA) and the Council
on Education of the Deaf (CED) Joint Committee. (2006). Fact
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Natural-Environments-for-Infants-and-Toddlers/.
Antia, S. D., Stinson, M., & Gaustad, M. (2002). Developing membership in the
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Chapman, D. A., Stampfel, C. C., Bodurtha, J. N., Dodson, K. M., Pandva, A.,
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DeConde Johnson, C., Beams, D., & Stredler-Brown, A. (2005). Preschool/
kindergarten placement checklist for children who are deaf or hard
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PlacementChecklistR6-06.pdf.
Dunst, C. J., Trivette, C. M., & Deal, A. (1988). Enabling and empowering fami-
lies: Principles and guidelines for practice. Cambridge, MA: Brookline Books.
Dunst, C.  J., Trivette, C.  M., & Hamby, D.  W. (2007). Meta-analysis of
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Hart B., & Risley, T. R. (2003). The early catastrophe. Education Review, 17(1),
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10  Early Intervention in Challenging
National Contexts
Claudine Störbeck and Alys Young

S’du Moyo, a teenager in a rural village in Zimbabwe, recently gave

birth to her first child, Senzeni. Given that she is young and healthy,
S’du gave birth at home and the local women tended to her and the
baby’s needs. Once Senzeni was about 6 weeks old, S’du traveled to
the nearest clinic for Senzeni to get her vaccination. Traveling long
distances is a challenge, as vehicles are scarce and petrol prices have
skyrocketed recently. S’du, her mother, and her infant had to leave
home before dawn. They arrived at the clinic, joined the long queue,
and were seen by the clinic sister by mid afternoon. S’du’s mother told
her that they were fortunate to have been seen before the vaccinations
ran out. Because baby Senzeni was thriving and S’du herself was so
young and healthy no one asked how her health had been during
the pregnancy. Everyone at the clinic was enthralled by the beautiful
engaging baby and said that S’du’s family was truly blessed to have
this special gift in their lives. But by the time Senzeni was nearing
12 months old S’du started to sense that there was something wrong.
She was not babbling as much as the other babies in the village and

305
306  Early Intervention in Challenging National Contexts

she seemed to be less interested in story times and fireside songs as

time went by.
S’du started to worry. She knew she needed to talk to someone and
ask for advice, but she was very reluctant to do so. What if there was
something “wrong” with Senzeni? Maybe she could not hear properly
or maybe she had brain damage? Recently a cousin of hers had a baby
with severe facial anomalies and developmental delays, and many
community members started blaming her and saying that the ances-
tors had been angered and were punishing the family. Her husband
left her as he was so ashamed and some people had started avoiding
the family. Both her cousin and her parents were feeling guilty about
somehow causing this “defect.” If anyone discovered that her baby had
“problems” she would be blamed in the same way and people would
start avoiding her too. She knew it would also mean that her parents
would lose their high standing in the community. On balance S’du
thought it was better not to draw attention to Senzeni, but she had
heard that the clinic that was offering vaccinations was now offering
hearing screening too. Should she find out for sure if anything was
wrong? But people with disabilities in her country were not readily
respected or treated as equals. What benefit would it bring to know if
Senzeni were deaf? After seriously considering all these concerns and
issues she decided to leave it and wait and see what might happen as
Senzeni grew up.

GUIDING QUESTIONS

1. What constitutes “low resource” or “developing world” national con-

texts and why might these be challenging for the implementation of early
intervention?
2. In what ways can your practice in an early intervention program be

impacted or improved through considering countries and contexts that
are very different from your own?
3. How can the core principles and best practice guidelines for early inter-
vention be adapted and implemented within these challenging environ-
ments without compromising either quality or cultural responsiveness?
 Störbeck and Young  307

COMPETENCIES ADDRESSED IN THIS CHAPTER

1. Socially, Culturally, and Linguistically Responsive Practices Including Deaf/

Hard-of-Hearing Cultures and Communities: Sensitivity to and Respect for
an Individual Family’s Characteristics
2. Professional and Ethical Behavior:  Fundamentals of Early Intervention

Practice, Legislation, Policies, and Research

INTRODUCTION

S’du lives in what is generally considered a developing nation. The cat-

egory of “developing” nations and countries is defined by indices such
as Gross National Income (GNI), degree of integration into the global
financial system, life expectancy, and literacy, with 150 countries cur-
rently on this list (International Monetary Fund, 2012). The terms
“resource-limited” or “low-income” countries are also commonly used.
It is within these countries globally that the majority of deaf children are
born and live today. Annually, there are 123 million births in developing
nations (United Nations Population Fund, 2011). Of these, approximately
737, 000 children are born deaf or hard of hearing, or as described in the
literature, “with a permanent congenital early-onset hearing loss” (PCHL)
[Olusanya, 2012; United Nations Children’s Fund (UNICEF), 2013]. This
translates into 6 per 1,000 live births compared with 1.3–2 per 1,000 live
births in developed countries (Olusanya, 2012; Olusanya & Newton,
2007). Overall, of the individuals identified as deaf or hard of hearing in
the developing world 80% can attribute the deficit to preventable diseases
in combination with the consequences of poverty, inadequate health care,
and conflict (Kiyaga, 2011). As the most prevalent childhood sensory
condition (Olusanya, Somefun, & Swanepoel, 2008) more than 90% of
babies with PCHL reside in the developing world (Friderichs, Swanepoel,
& Hall, 2012; Olusanya, Emokpae, Renner, & Wirz, 2009; Swanepoel &
Störbeck, 2008).
This chapter considers the implications of early hearing detection
and, more specifically, early intervention for deaf and hard-of-hearing
308  Early Intervention in Challenging National Contexts

children and their families in this context. We will describe how core
principles in early intervention practiced in developed world countries
can be realized differently in challenging national contexts. Furthermore,
we will argue for the importance of not seeing differences as deficits in
comparison with the baselines of the developed world. To do so fails to
recognize the potential resources and strengths that may be contextually
embedded in nation, culture, or tradition.
The chapter will also show how insights from early intervention in
developing world contexts can help professionals within higher resourced
contexts focus on the significance of cultural values and linguistic diver-
sity as the starting point for the creation of effective services, rather than
as variables requiring the adaptation of a standard approach.

CHALLENGING CONTEXTS

The priorities and practices of early hearing detection and intervention

(EHDI) have been driven and developed in the national contexts in which
only 10% of the world’s deaf children reside. These economically rich
countries can take for granted the existence of comprehensive health care,
universal education, and a range of professional, skilled service providers
as well as the infrastructures to ensure the delivery of care. Although in
some cases equitable access to resources and professional expertise may
pose challenges, the requirements for the provision of universal hear-
ing screening and subsequent early intervention are present or obtain-
able. Hence it is with confidence that these resource-rich nations can set
gold standards for the EHDI pathway: hearing of all infants screened by
1 month of age, a comprehensive audiological evaluation completed by
3 months, and referral to an early intervention program initiated within
2 days of the confirmation of hearing status, with all children receiving
appropriate early intervention by no later than 6  months of age [Joint
Committee on Infant Hearing (JCIH), 2007]. In some states and nations
these standards are mandated by law (see Chapter 4, Legislation, Policies,
and Role of Research in Shaping Early Intervention), and the principal
challenge is merely to meet those standards and comply with national
 Störbeck and Young  309

and professional guidelines. In total contrast, the majority of developing

countries, such as the one in which S’du lives, do not yet recognize the
importance of newborn hearing screening resulting in the early detection
of deafness and therefore do not have national standards or legislation
in place.
Although there is great diversity among countries known as develop-
ing nations, most lack, on a universal basis, the kinds and quality of infra-
structures on which EHDI programs rely, for example, modern health
care facilities, appropriate diagnostic technologies, assistive hearing
technologies, and trained professional early interventionists (Cavalcanti
& Guerra, 2012; Kamal, 2013). For this reason it is estimated that more
than 90% of babies born in the developing world do not have the pros-
pect of either hearing screening or early detection (Swanepoel, Störbeck,
& Friedland, 2009). Furthermore, in many instances general infra-
structures that enable access to early intervention, such as roads, fam-
ily income to pay for services, literacy, and exposure to relevant public
health information, are also missing (Kiyaga, 2011; Saadallah & Rashed,
2007; Yee-Arellano, Leal-Garza, & Pauli-Muller, 2006).
There are, however, pockets of provision. In some countries, such
as in parts of South Africa, there are pilot hearing screening programs
and some advanced audiological services, although not on a universal
basis for all (Friderichs et al., 2012; Meyer & Swanepoel, 2011; Swanepoel,
Ebrahim, Joseph, & Friedland, 2007; Theunissen & Swanepoel, 2008).
In the absence of formal early intervention some organizations in vari-
ous countries provide charitably funded early childhood education
opportunities such as CLaSH (Children with Language, Speech, and
Hearing Impairments) in Windhoek, Namibia, and Nzeve (“the ear”) in
Zimbabwe. In addition to philanthropic individuals, developing coun-
tries also attract the assistance of charitable development organizations
such as CBM, The Christian Blind Mission (which is working toward
improving Deaf Education in Madagascar with a growing interest in
younger deaf children and infants), and lobbying organizations such as
VSO (Voluntary Service Overseas). In the majority of cases, however,
early intervention for deaf children and their families is being devel-
oped and practiced in conditions in which at least some of the resources
310  Early Intervention in Challenging National Contexts

critical for support, and often taken for granted in the developed world,
cannot be assumed or relied upon.
In many of these developing countries life itself is precarious as a
result of illnesses that are largely eradicated in the developed world, or
as a result of war, famine, poverty, and political and economic instability.
Consequently, a developmental intervention such as hearing screening
and associated early intervention is often perceived as a nonessential ser-
vice that does not take precedence over more urgent issues such as infant
mortality, maternal health, lack of sanitation, and illnesses such as AIDS
and tuberculosis (Olusanya, 2011a). The World Health Organization
(WHO), which measures burden of disease by mortality or case fatality,
has confirmed these priorities (Olusanya, 2007). For mothers such as S’du
in our example, who have not had access to health education about hear-
ing or language development, it is understandable that a condition that is
immediately life threatening takes on a greater priority than something
that cannot be “seen” and does not appear to be life threatening, such as
being deaf.
In developed world countries all spheres of the community from fami-
lies to national governments recognize the value of early hearing detec-
tion and high-quality early intervention in terms of optimal linguistic,
socioemotional, and cognitive development for deaf or hard-of-hearing
children. In some countries within the developing world, such optimiza-
tion of an individual’s potential is a luxury in comparison with the assur-
ance of life itself (Kiyaga, 2011). It is well known that the consequences of
limited hearing in infancy without access to early language developmen-
tal support are far reaching in terms of education, employment, citizen-
ship, and economic independence (see Chapter  4, Legislation, Policies,
and Role of Research in Shaping Early Intervention). In countries with
low economic resources the negative consequences in adulthood result-
ing from failure to acquire a first language or achieve literacy may them-
selves be life threatening at the most basic of levels, such as the ability
to earn and acquire food and shelter in order to sustain life (Olusanya,
Ruben, & Parving, 2006). More generally the majority of deaf or hard-of-
hearing people in the developing world still do not have the opportunity
to achieve a quality of life equal to hearing peers, nor of accessing the
 Störbeck and Young  311

means to equity in the first place through health, education, employment,

and citizenship (Musengi, Ndofirepi, & Shumba, 2013).

ENTRY INTO “EARLY” INTERVENTION

In developed world countries, the focus on early intervention for deaf

or hard-of-hearing children and their families did not arise as a result of
universal newborn hearing screening. It has long been recognized that
supporting deaf or hard-of-hearing infants and their families from the
earliest days following identification would maximize developmental
outcomes. The definition of “early,” however, has changed with universal
screening and confirmation of a child as deaf or hard of hearing routinely
occurring in the first few months of life, rather than the first few years
of life. Research evidence has made clear that there are significant dif-
ferences in developmental opportunities between early and later identi-
fied infants provided that appropriate early intervention services begin
by 6 months of age (Yoshinaga-Itano, 2003). Early identification without
comprehensive early intervention will not ensure that the developmen-
tal gains available to deaf or hard-of-hearing children can be realized
(JCIH, 2007).
However, in countries with low economic resources and health care
services yet to be optimally developed, there is not necessarily a direct
link between Universal Newborn Hearing Screening (UNHS) and early
intervention, nor is there a logical necessity for “early” screening to mean
from the time of birth. Within the majority of these developing world
contexts the question of whether screening in the first few months of
life makes a difference in the lives of deaf infants remains debatable and
unresolved. “Universal” is not necessarily regarded as the most prefer-
able screening option and the timing of screening is influenced by factors
other than what might be regarded as developmentally optimal by first
world standards.
For example, The Joint Commission on Infant Hearing (JCIH,
2007)  and others (Olusanya, 2011b; Olusanya et  al., 2009)  have rec-
ommended that rather than universal newborn hearing screening,
312  Early Intervention in Challenging National Contexts

developing countries implement targeted newborn hearing screening

(TNHS). This would include many of the high-risk factors (JCIH, 2007;
Störbeck, 2012) as well as conditions such as the requirement for a bilat-
eral referral, thereby excluding any unilateral referrals at screening. This
is believed to be a more realistic goal that will increase the chances of
identifying “high-risk” children earlier and directing scarce resources
toward them. Yet in S’du’s case, for example, targeted screening would
not have led to the identification of Senzeni’s deafness. She had been well
all through her pregnancy, there was no family history, and Senzeni was
not born with any physical features that might alert concern.
Even if a targeted program of newborn hearing screening were
implemented by preference in countries of the developing world, ready
access of babies for screening cannot be assumed. Serious consider-
ation of both the timing and location of screening is needed in order to
begin an early hearing detection program. Although screening in the
developed world usually takes place in the hospital or clinic before the
child is discharged from the hospital, fewer than 60% of babies born
in developing countries are born in hospitals. Numbers drop to as low
as 35% in South Africa and Nigeria and 15% in Somalia among others
(Störbeck, 2012). Limiting hearing screening to only those babies born
in hospitals would miss a significant number of babies born in develop-
ing countries. Nonetheless, novel and contextually coherent solutions
are possible.
For example, to adapt to the significant shortage of ear-care pro-
fessionals within the developing world, such as otolaryngologists or
ear, nose, and throat doctors, and audiologists (Fagan & Jacobs, 2009;
Olusanya, Luxon, & Wirz, 2004), the use of nurses (Friderichs et  al.,
2012; Meyer & Swanepoel, 2011; Moodley & Störbeck, 2012; Olusanya,
2011a) and even paraprofessionals for newborn hearing screening has
been recommended (Olusanya et  al., 2009). It has been demonstrated
in a hospital-based service in a developing world context that “nonspe-
cialist” staff can successfully screen newborns with an acceptable level
of coverage and specificity (Olusanya, Wirz, & Luxon, 2008). However,
the practice is yet to be readily accepted by audiologists even in contexts
in which audiologists are a scarce resource. This in itself is a barrier to
 Störbeck and Young  313

the development of widespread hearing screening programs. Yet in some

developed world countries such as the United Kingdom, the training of
lay people as hearing screeners is the preferred option to ensure univer-
sal and flexible screening coverage; audiologists’ time is regarded as best
used for more complex and specialized activities.
With regard to location, there have been various recommendations
for community-based screening programs to be offered in immuniza-
tion clinics in order to make use of current opportunities to interface
with infants and caregivers (Swanepoel, Louw, & Hugo, 2007). Global
immunization data demonstrate that 83% of the world’s children under
the age of 1 year have received their immunizations. The World Health
Organization has identified a 2020 goal of each country achieving a
90% immunization coverage rate nationally (UNICEF, 2011). As the
most consistent point of contact with parents in the developing world,
immunization represents a significant point of opportunity for early
detection of hearing ability. The point of mandatory BCG (Bacille
Calmette-Guérin vaccine) inoculation in Côte d’Ivoire, for example, has
been utilized for a pilot UNHS program (Tanon-Anoh, Sanogo-Gone,
& Kouassi, 2010). In our example, S’du was prepared to travel a long dis-
tance in difficult circumstances to secure her baby’s inoculations. Her
presence at the clinic potentially provided a key opportunity, not just
for hearing screening, but for support in coming to terms with the pos-
sibility that Senzeni was deaf, what it meant, and how to share the news
with family and community.
The meshing of early hearing detection with preexisting infant health
care programs provides developing countries with financially viable
options as opposed to setting up new systems and processes. This approach
also potentially enables hearing screening to be subsumed within systems
that are socially accepted rather than being regarded as a separate and
potentially stigmatizing event (Olusanya & Akinyemi, 2009).
There are significant questions surrounding the utility and ethics of
early detection if there is no associated early intervention service for
deaf or hard-of-hearing children and their families. What is the value
of knowing if nothing or little can be done? For example, the provision
of hearing aids, and just as importantly their continued maintenance
314  Early Intervention in Challenging National Contexts

(including changing ear molds as children’s ears develop and a ready sup-
ply of batteries), is usually available only to the rich minority, not the
poor majority. Even where access to hearing aids is possible they are not
always targeted at those children for whom they might make the great-
est difference in terms of audition (Kiyaga, 2011). Yet to debate the ethics
of early intervention in terms of resources and practices associated with
amplification, rehabilitation, and access to health care systems is perhaps
to miss the point. As the whole of this book is committed to demon-
strating, early intervention is a multifaceted process that fundamentally
involves language, communication, the family, culture, and the develop-
mental context. It is not narrowly defined.
In our example, S’du would benefit from information and interactions
with knowledgeable and skilled others who can allay some of her fears
about her child’s future. At this point she does not know she has choices
about how to support Senezi’s language development and that she and
her family can make a real difference. She has no answers to the false
assumptions others might make about why her daughter is deaf. She has
little means to combat the stigma she might acquire from her family and
community. She has not met a deaf or hard-of-hearing adult who leads
an independent life. Comprehensive early intervention in low resource
countries must address these concerns (Bevilacqua, Alvarenga, Costa, &
Moret, 2010), and yet, in many examples around the world, early hearing
identification and intervention are defined far more narrowly as an issue
of health and hearing.
There are significant problems with importing models and
approaches of early intervention that have been tried and tested in
the developed world into developing world contexts. Problems are
not limited to the inherent differences between low resource and high
resource countries. Fundamentally, early intervention practices must
be culturally meaningful to be embraced in cultures and contexts far
removed from the western ones in which they were developed. There
is a range of normative assumptions that underpin early intervention
with early identified deaf and hard-of-hearing children that potentially
can be transformed within diverse cultural contexts. It is to some of
these issues that we now turn.
 Störbeck and Young  315

CHALLENGING NORMATIVE ASSUMPTIONS

The early intervention component of the EHDI pathway, as practiced

in developed world contexts, implies culturally embedded assumptions
concerning, for example, who or what is “family,” the usual expectations
of parent–child early interaction practices, and the authority ascribed to
professionals who provide early intervention services. Although there is
increasing recognition of family and cultural diversity (e.g., Steinberg,
Bain, Delgado, & Ruperto, 2003), the development of culturally sensi-
tive early intervention services is usually regarded as an adaptation
from the norm, however respectfully intended, or something special to
achieve the same ends for those identified as “other” or “minority” or
“different” [American Speech-Language-Hearing Association (ASHA),
2013; JCIH,  2013]. By contrast, a focus on early intervention practice
in developing world contexts forces reflection on the very definition of
some of the fundamentals that underpin the goals and practices of early
intervention.

“Family” and “Parent”

Family-centered early intervention is a central touchstone of good prac-
tice as exemplified in this book and in recent international guidelines
(Moeller, Carr, Seaver, Stredler-Brown, & Holzinger, 2013). But what and
who counts as “family” needs to be routinely examined. In many cultures
the notion of a nuclear rather than an extended family is alien, and the
wider community might assume levels of care responsibility that would
seem unusual from the perspective of many developed world cultures. Yet
it is not necessarily correct to assume that what appears “different” from a
developed world or majority culture perspective is a result of diversity in
cultural values and norms. In many low-resource countries the nature of
“family” is also fundamentally molded by material circumstance.
In the developing world a family can be anything from a child-headed
household (due to parents lost to famine, violence, or AIDS) to a multi-
generational family (of up to four to five generations in one home due
to extreme poverty) in which it appears that the child has numerous
316  Early Intervention in Challenging National Contexts

“parents.” In situations in which parents have either passed away or have

had to migrate to city centers for scarce jobs, commonly children are
“adopted” by neighbors who will either take them in or check on them
daily. For example, in the township of Alexandra, South Africa local gran-
nies, “goggos” who are not blood relatives, might take children into their
homes and foster them informally as their own children. Who or what is
“family” is contextually as well as culturally produced. It is not a given.
Consequently the constituency of those engaged in family-centered
approaches to early intervention must be negotiated. The family mem-
bers available to support a deaf or hearing child’s development in terms
of “who” and in what “role” may be far richer than the European or North
American notions of “family” routinely allow.

Child-Rearing Practices
Child-rearing practices vary widely on a global scale (Lloyd, Phoenix,
& Woollett, 1991). Expected trajectories and norms of child develop-
ment might be mediated by child-rearing practices that are far less
common in the worlds in which “standard” approaches to support-
ing deaf children’s language and social development have been cre-
ated. For example, in communities in which children are to be seen
and not heard, the language-learning process is passive and observa-
tional. Gaps in the language development and speech production of
deaf and hard-of-hearing children are commonly not identified until
later when the child has earned the right or reached the appropriate
age to contribute to the conversation. In some communities such as the
Wodaabe, parents are not allowed to speak to their first two children
(Beckwith, 1983). In other communities, children are not encouraged
to ask questions, one of the early developmental stages recognized in
western child developmental charts. In our example, Senzeni’s lack of
enjoyment of fireside songs was a key trigger for her mother’s concerns
because it represented a cultural marker within normal child develop-
ment that was not being reached.
These and other culturally normative practices associated with child
development do not just make the early recognition of language delays
 Störbeck and Young  317

more difficult, but also create a challenge for parents and families who
wish actively to support their child’s language development. Seemingly
uncontroversial behaviors such as eye contact that have clear devel-
opmental benefits for children who are deaf or hard of hearing may
require attitudinal shifts that are problematic for parents and caregiv-
ers in some communities. For example, in the Zulu culture, eye contact
between a child and an adult can be seen as defiant and disrespectful
and in many Asian and Latin American cultures sporadic eye contact
is regarded as being more respectful than steady eye gaze. Another
basic assumption underpinning early intervention practice is that par-
ents and caregivers always communicate directly with their child, yet
some cultures do not permit parents to communicate directly with
their children.
Parents of children who are deaf or hard of hearing throughout the
world and in many diverse cultural circumstances face the dilemmas and
challenges of having to make changes for the sake of communicating opti-
mally with their children. There is nothing special about developed world
contexts in this respect. However, in some contexts there may be consid-
erable social and cultural costs in making seemingly taken-for-granted
adaptations such as those associated with foundations of preverbal lan-
guage, for example, eye contact, parent–child interaction, social play,
and touch. Adaptive behaviors may mark parents as culturally divergent
within their own communities and represent significant transgressions
of normative practices. The cultural imperative to conform may itself
become a barrier to parents and families attempting to make changes that
support their deaf or hard-of-hearing children’s development. Families
may risk cultural stigma in order to practice what they believe is best for
their children.

UNDERPINNING CONCEPTS AND VALUES

IN EARLY INTERVENTION

In developed world contexts, “quality,” “effective,” and “best practice”

early intervention with deaf or hard-of-hearing children and their fam-
ilies are underpinned by some key concepts and values. These include
318  Early Intervention in Challenging National Contexts

parent–professional partnerships (Guralnick, 2000), family-centered

practice (Moeller et al., 2013), and informed choice (Young et al., 2006).
Guidelines supporting best practices advocate for the inclusion of deaf
and hard-of-hearing people within policy and practice, equality for spo-
ken and signed languages as potential options for families and children,
and bias-free professionals who seek to empower not to persuade (JCIH,
2007, 2013; Moeller et al., 2013). Furthermore, early intervention practice
no longer assumes a deficit model in which its purpose is to minimize the
gap between deaf or hard-of-hearing children’s development in compari-
son to their hearing peers. Rather the expectation is one of potentially
normative growth in all developmental domains. The job of early inter-
vention is to help deliver that goal.
In developing world contexts, some of these underpinning values and
concepts are highly problematic. In part, this is a result of needing to con-
sider the cultural equivalence of some of their components as our previ-
ous discussions concerning “family” and “child rearing” have illustrated.
However, they are also problematic because of more macrolevel concerns
such as the place of deaf or hard-of-hearing people in society and the
economic realities of living in low resource nations.
For example, in some developed world countries, deaf or hard-of-
hearing people still struggle for acknowledgment in the law of their
equal rights to services. They might fight discrimination in employment,
but would be unlikely to battle against a designation of being less than
human. Yet in many countries, particularly those in sub-Saharan Africa
as well as India, the status of deaf and hard-of-hearing people in society is
considered so low that words used to refer to them deny both individual-
ity and humanity. Kiyaga (2011) in discussing the countries of East Africa
remarks:

Deaf persons are never referred to by their personal name but

instead are called kasiru in Luganda [“stupid one”]; ebang or
ebuubu ngon in Iteso [“mad person or thing of no value”]; kisiwi
in Kishwahili and ikiragi in Kinyarwanda both connote “a thing.”
(pp. 92–93, italics in original)
 Störbeck and Young  319

In circumstances in which stigma toward people who are deaf or hard

of hearing is not merely attitudinal but structurally inscribed into lan-
guage and social relations, notions of positive trajectories for the devel-
opment for deaf or hard-of-hearing children are radical.
Another sociostructurally determined variable in the development of
children who are deaf or hard of hearing in many countries concerns the
gender of the child. In societies in which boys are more highly valued
than girls, gender matters in the allocation of scarce resources, availabil-
ity of education, and expectations of autonomy. In these circumstances.
if a child is, in addition to being a girl, also deaf or hard of hearing, she is
doubly disenfranchised. In some cases lack of equality extends to active
abuse, including sexual abuse of deaf and hard-of-hearing girls (Kiyaga,
2011). Fundamental values of early intervention concerning equality of
opportunity, treating all children equally, and seeking optimal develop-
mental potential for children who are deaf or hard of hearing interact
with deeply embedded social attitudes and expectations.
In the face of these and other macrolevel concerns, the central issue
in early intervention shifts from its potential to release optimal develop-
ment for a deaf or hard-of-hearing child to whether that potential might
ever be realized in circumstances of extreme discrimination (regardless
of the quality of the intervention).

Transforming Underpinning Concepts into Culturally

Meaningful Practices
Despite the considerable, economic, cultural, and sociostructural chal-
lenges facing early intervention for children who are deaf or hard of hear-
ing and their families, there are nonetheless some important examples
of transformative practice in early intervention in challenging contexts.
One such example is the HI HOPES early intervention service for deaf
children and their families in South Africa (Störbeck & Pittman, 2008).
HI HOPES is an acronym and stands for Home Intervention Hearing and
Language Opportunities Parent Education Services. The service, funded
by time-limited grants and donations, primarily from the business sec-
tor with recent support from provincial governments, is offered without
320  Early Intervention in Challenging National Contexts

bias and free of charge to any family with a deaf or hard-of-hearing child
under the age of 3 yearsa who wishes to receive it.
One of its key principles is to “meet the family where they are.” This
is a familiar concept to many developed world early intervention pro-
grams and usually implies discovering where a family begins in its under-
standing of what it means for a child to be deaf or hard of hearing and
tuning into the expectations, priorities, and values of the family in order
to provide appropriate support. (See Chapter 3, Families: Partnerships in
Practice.) Meeting a family where the family is takes on additional layers
of consideration in low-resource settings and is a good example of the
potential for transformative practice. This involves reconsideration of the
meanings and implications of underpinning concepts in early interven-
tion so as to be effective in culturally diverse and socioeconomically chal-
lenging contexts.
HI HOPES quite literally meets the family where they are in offering a
home-based program. This is very rare in developing world contexts. HI
HOPES has worked with adults, children, and families within home situ-
ations ranging from shacks, xenophobic temporary camps,b compounds
and orphanages, to one bedroom back rooms for live in housekeepers
and nannies to apartments and houses. It has provided a service to fami-
lies living in townships, rural areas extending as far as 3 to 4 hours away
from towns, and private dwellings in the wealthiest parts of cities. The
home-based nature of the program eliminates the expense and travel
time for families and, therefore, removes a potential barrier to partici-
pation. Providing services in the home is also vital because the home
provides the primary context and physical and emotional resources to
support the child’s development.
For example, there is little point in an early interventionist working
with a family in an overcrowded one room shack recommending devel-
opmental activities that rely on the acquisition of specific toys or materials

a
Early Intervention is ideally offered from birth to 3 years, though when older children are
referred to HI HOPES they are supported for shorter periods of time, as ethically it is felt
that they cannot be turned away.
b
Xenophobia is the act of intense dislike of foreigners often leading up to force and violence.
During xenophobic attacks in South Africa in 2008, camps were set up to host foreigners
and protect them from such attacks.
 Störbeck and Young  321

beyond the family’s means. Being in the home enables an assessment of

resources and strengths. Families can be shown how to utilize items such
as stones, foods, tins, pots, and pans as well as the outside natural envi-
ronment to help the child develop awareness of sound, play turn-taking
games, build up signed vocabulary, develop early social skills, and so
forth. This use of home-based resources is not only creative but funda-
mentally reinforces the adequacy of the circumstances in which the child
is developing. At home, early interventionists (Parent Advisors in the HI
HOPES program) can observe the adults and other children in context
and identify positive family-specific resources that can be harnessed. For
example, in some cultural contexts, interaction activities such as learning
to listen that rely on silence and privacy might make little sense, but those
that rely on the involvement of multiple people and quick exchanges of
visual attention such as joint attention and rhymes or singing might
work well.
The approach exemplified in HI HOPES is not an adaptation to lim-
ited circumstances but rather a deliberate exploitation of potential and
resource. An approach emphasizing what is present rather than what is
missing in the developmental environment also serves to destigmatize
the “difference” or “problem” a deaf or hard-of-hearing child might bring
to a family and reinforces the bonds of belonging.

CONCLUSIONS

As we end this chapter and indeed the book, readers may believe that
they have learned a great deal about the developing world and might
be quite relieved not to be working in such challenging contexts. If you
believe that this chapter has provided a look at how the developing world
works, then we have failed in what we have aimed to do, which is to pro-
vide you with some insight into your own contexts through this con-
sideration and to challenge you to look past color, race, religion, dress,
gender, language, accent, and socioeconomic status and see each family
of a deaf or hard-of-hearing baby within the framework of the challenges
and resources that the world holds for him or her. Becoming a culturally
322  Early Intervention in Challenging National Contexts

responsive and effective early intervention professional requires a daily

acknowledgment of your biases, a continuous striving toward under-
standing each family’s values and perspectives, and an appreciation that
context and culture produce the conditions, resources, strengths, and val-
ues through which a deaf child will develop. Our challenge is to join in
the production of assets that are grounded in what is normal for families,
rather than to judge them or view them as divergent.
Early intervention with families with deaf or hard-of-hearing chil-
dren is never about changing the context in which the child is develop-
ing, but is about working through it and learning from it. Importing any
model, approach, or goal created and practiced in one societal context
and seeking to impose it on another will not work. Transforming a model
or approach through the families, contexts, cultures, and communities in
which the child is being reared will work. Providing effective early inter-
vention services in challenging contexts is not about being culturally sen-
sitive and making adaptations; rather, it is about being transformative
and growing best practice from within the worlds in which we seek to
make a difference. It is the big lesson that attention to the developing
world can teach us.

SUGGESTED ACTIVITIES

1. With reference to the vignette at the start of this chapter, what do you
think that S’du should have done? Give reasons for and against her deci-
sion to wait and see what would become of Senzini. As a professional,
but bearing in mind the cultural context of S’du’s family, what could you
have done?
2. List a few of the community groups and cultures you are currently work-
ing with as an early interventionist (if you are not yet working in the field
of early intervention you can still do this for the area in which you live).
How much do you know about these individual cultures? Be careful to
differentiate between fact and assumptions or bias. How would you go
about gaining more information about the traditions and beliefs of people
in these communities and their cultures?
 Störbeck and Young  323

3. Read at least one of the articles in the following recommended resources

list that addresses early intervention in a country, culture, or context with
which you are unfamiliar.
4. Take some time for self-reflection:  what are your own beliefs, opinions,
assumptions, and biases regarding gender, race, language, culture, reli-
gion, and socioeconomic level?

RECOMMENDED RESOURCES

1. Kiyaga, N.  B. (2011). Unique challenges related to the education of

deaf and hard of hearing individuals in developing countries:  Examples
from East Africa. In D. F. Moores (Ed.), Partners in education: Issues and
trends from the 21st International Congress on the Education of the Deaf
(pp. 89–104). Washington, DC: Gallaudet University Press.
2. HI HOPES. http://www.hihopes.co.za.
3. Olusanya, B. O., & Akinyemi, O. O. (2009). Community-based infant hear-
ing screening in a developing country:  Parental uptake of follow-up ser-
vices. BMC Public Health, 9, 66. doi:10.1.1186/1471-2458-9-66.
4. World Health Organization, UNICEF (2012). Early childhood development
and disability: A discussion paper. http://www.who.int/disabilities/
media/news/2012/13_09/en/index.html.

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 INDEX

Page numbers followed by “n“ indicate footnotes. Page numbers in bold indicate chapter
contributors.

accessibility of language, 240–41, 244. and communication in the family, 244

See also access to communication; and developmental impact of being
access to language deaf, 202
access to communication and family support for language
and ASL/English Bilingual approach, learning, xi
235–36, 251–53, 253–54 and Individualized Family Service
and brain development, 262 Plans, 113, 275, 278, 283, 286, 289
and communication in the family, and the SKI-HI Deaf Mentor Program, 148
242, 244 and support from deaf or hard of
and family support for language hearing adults, 88
learning, 245–46 accommodations, 224
and listening and spoken language accountability, 9, 117–18
acquisition, 255, 257, 258, 259, 261 acoustic scaffolding, 243
and sociocultural and environmental action-oriented activities, 248
considerations, 240–41 action planning, 71
access to information, 89 active listening, 11, 92
access to language adaptive functioning and development,
and ASL/English Bilingual approach, 236 111, 206, 278, 285, 317
and brain development, 237 administration, 157

329
330  Index

adult learning, 38, 53–54, 56 and developmental assessment,

adults, deaf or hard-of-hearing 210, 218
and ASL/English Bilingual approach, 252 and early intervention legislation, 105,
and challenging national contexts, 314 111, 113, 116–17, 122
and collaboration with deaf and and efficacy of communication and
hard-of-hearing community, 136–38, language pathways, 126, 128
142, 143–53, 153–54, 157–58, 159–60 and IDEA Part C policy mandates, 28
and developmental assessment, 210 and Individualized Family Service
and family-centered practice, 81, Plans, 280, 283, 286–87, 289–90,
86, 87–88 293, 295
and family partnerships, 94 and knowledge and skills document, 19
and family well-being, 73 and linguistic and cognitive
and importance of early development, 235–36, 239, 243,
intervention, 187 244, 249–50
and Individualized Family Service recommended resources on, 161–63,
Plans, 280–81, 291, 295, 297, 299 194, 301
and informed decision making, 90 American Society for Deaf Children,
and legislation on early intervention, 21, 295
113, 122 American Speech-Language-Hearing
professional collaboration with, 135 Association (ASHA)
advisors, 146–47, 152–53 and challenging national contexts, 315
advisory panels, 109 and early intervention legislation, 112–13
African Americans, 143, 152 and hearing screening and evaluation,
agency-related competencies, 10 173, 176, 180
Alexander Graham Bell Association for and Individualized Family Service
the Deaf and Hard of Hearing Plans, 281, 289
best practices and policy and linguistic and cognitive
recommendations, 124 development, 246
and digital tools for professionals, 53 recommended resources, 129–30, 192
early intervention resources, 30, 263 Americans with Disabilities Act (ADA),
and family support resources, 95 120–21, 124
and Individualized Family Service analytic learners, 179
Plans, 295, 300 Antia, S., 289
and knowledge and skills document, 21 Asia, 317
and linguistic and cognitive assessment of hearing. See hearing
development, 249 assessments (screenings and
and professional learning resources, 62 evaluations)
American Academy of Audiology assistive listening technologies, 120,
(AAA), 176 122, 148, 155, 220, 236, 309. See also
American Academy of Pediatrics (AAP), cochlear implants; hearing aids
125, 172, 180 audiograms, 205
American Sign Language (ASL) audiologists
ASL/English Bilingual approach, 138, and challenging national
221, 235, 250–54, 260–62, 263, 265 contexts, 312–13
best practices and policy and children with developmental or
recommendations, 123–26 physical conditions, 183–84
and collaboration with deaf and and collaboration with deaf and
hard-of-hearing community, 137–38, hard-of-hearing community, 141,
142–43, 148, 153, 156 151, 153
 Index  331

and early childhood education benchmarks, 211–12

policy, 12 Benedict, B., xvii, 61, 87, 135–63
and early intervention legislation, best practices
115, 116–17 and audience for book, xx
and hearing screening and evaluation, and challenging national contexts, 306,
169, 171, 172–73, 176–78 318, 322
and Individualized Family Service and collaboration with deaf and
Plans, 284, 296–97 hard-of-hearing community, 136,
and informed decision making, 88 143, 155
and knowledge and skills document, 24 and culture of accountability, 9
and listening and spoken language and developmental assessment,
approach, 255, 258 200–201, 223–24
and listening technologies, 187 and early intervention legislation,
and personal learning agendas, 43 113–14, 116
and professional relationships with and early intervention policies,
families, 69 14, 124–26
role in early intervention, 186 and exemplary practice, 40
and support for families, 190 and family-centered practice,
Auditory Brainstem Response (ABR), 78, 300
22, 173 and importance of early
Auditory Dys-synchrony, 175. See also intervention, 185
auditory neuropathy and Individualized Family Service
auditory (8th) nerve, 174 Plans, 298–99
auditory neuropathy, 175 and interdisciplinary perspectives, xvii
auditory pathways, 174 and legislative/policy environment,
auditory technologies. See assistive 106, 128
listening technologies; cochlear and linguistic and cognitive
implants; hearing aids development, 249
auditory-verbal practice, 6–7, 256–60 and needs of early intervention
Australia, 257 professionals, 4
authentic assessment, 22, 205–6, 212, 214, recommended resources, 62, 96
219, 223–24 biases, 70
Automated Auditory Brainstem Response bilingualism
(AABR), 171–72 ASL/English Bilingual approach,
availability of language, 240–41, 244. 138, 221, 235, 250–54,
See also access to language 260–62, 263–64
and collaboration with deaf and
babbling, 242, 305–6 hard-of-hearing community,
Baby Signs, 253 138, 140
Bacille Calmette-Guérin (BCG) vaccine, 313 and efficacy of communication and
Bagnato, S., 219 language pathways, 126, 128
Bailey, D., 74 and linguistic and cognitive
Beach Center on Disability, 73–74 development, 238–39, 244–45
Beginnings for Parents of Children Who recommended resources, 161
Are Deaf or Hard of Hearing, 249 Bill, Hillary, and Chelsea Clinton
behavioral audiological tests, 22 Foundation, 53
behavioral issues, 147–48 blogging, 54, 90
Behavioral Observation Audiometry Bodner-Johnson, B., 67
(BOA), 173 book reading, 259–60
332  Index

brain physiology and development cochlear implants

brain-compatible learning, 54 and ASL/English Bilingual
and developmental assessments, 202 approach, 250–54
and early communication, 236–37 and children with developmental or
and family well-being, 73 physical conditions, 183
and home environments, 67 and collaboration with deaf and
and linguistic and cognitive hard-of-hearing community, 146,
development, 235, 236–37 152, 155
Brazil, 202 and efficacy of communication and
British Columbia Early Hearing language pathways, 127–28
Program, 279 and expressive communication
Bronfenbrenner, Urie, 68 continuum, 239
Bruder, M. B., 10 and Individualized Family Service
Buysse, V., 113 Plans, 281
and informed decision making, 88
Calderon, R., 84 and knowledge and skills
Canada, 279 document, 23, 24
care coordination planning, 182–83 and linguistic and cognitive
CENTe-R document, 17 development, 233, 235, 239, 243–44
Centers for Disease Control and and listening and spoken language
Prevention (CDC), 108, 174–76, approach, 188, 255–56, 257,
177, 192 260, 261
certifications, 25, 27–28, 37 outcomes, 258
childcare, 69, 83 and receptive communication
child language development continuum, 238
and ASL/English Bilingual and relationships of professionals with
approach, 250–54 families, 70
and communication in the family, 242–45 and role of pediatric audiologists, 186
continuum for processing and using coded forms of English, 239
language, 237–41 cognitive abilities and development
and diversity of learning needs, 235–36 connection to language, 252
early communication and brain and developmental assessment,
development, 236–37 202, 206
effective practices for, 247–48 and early communication, 236–37
and family support for child’s language and early sensory experiences, 234–35
learning, 85, 245–50 and efficacy of communication and
listening and spoken language language pathways, 128
acquisition, 254–62 and emotional well-being, 190
child-rearing practices, 67–68, 74, 79, 86, and Individualized Family Service
87–88, 316–17 Plans, 285
child-related competencies, 10 and newborn hearing screening, 5
Children with Language, Speech, and and norm-referenced
Hearing Impairments (CLaSH), 309 assessments, 210–11
child rights, xvi. See also Deaf Children’s Cole, E., 259
Bill of Rights (DCBR) Collaboration and Interdisciplinary
Christian Blind Mission, 309 Models and Practices, 277
Clark, Karen, 29 collaboration and partnerships
Clerc Center, 63, 220, 225, 249, 301 and ASL/English Bilingual
coaching, 57–60 approach, 250–54
 Index  333

challenges to, 158–59 and listening technologies, 189

and challenging national contexts, and “medical home” concept, 180–81
318, 320 with parents, xiii
and children with developmental or and personal learning agendas,
physical conditions, 181–83, 183–84 42, 43, 47
and coaching and mentoring, 57–60 and professional dispositions, 11
and competencies of early intervention and professional learning
specialists, 10 activities, 50, 51
and culturally competent system of programs promoting, 154–58
care, 294 rationale for, 143–53
and Deaf Culture, 141–43 and role of deaf and hard-of-hearing
and developmental assessment, 204, adults, 137–38
206–7, 207, 208, 210, 213, 219, 223 and specialized skill sets, 21, 24
and digital tools for professionals, 53 and support for families, 190–91
and early childhood education policy, 7 types of involvement, 153–54
and early intervention legislation, collegial support, 157
113, 116 Colorado Home Intervention
and early intervention research, 27 Program, 148
and efficacy of communication and common sense learners, 179
language pathways, 128 communal childcare, 89
and EHDI legislation, 107–8 communication development, 285–86
and exemplary practice, 39, 41 communication modalities
between families and professionals, xi and ASL/English Bilingual approach,
and families’ impact during the early 235–36, 251
years, 67–74 and assistive listening technologies, 139
and family-centered practice, 74, 75–78, and continuum for processing and
78–88, 80 using language, 238–40
and family’s role in early and deaf role models, 148
intervention, 74–75 and developmental assessment, 204
fostering during early intervention, xvi and efficacy of communication and
and guidelines for working with language pathways, 126–28
families, 91 and evidence-based practices in early
and hearing screening and evaluation, intervention, 106
171, 177 and exemplary professional
and heterogeneity of deaf and practices, 40
hard-of-hearing community, 138–41 and informed decision making, 88
and IDEA Part C policy mandates, 28 and natural environments, 113, 289
and importance of early and role of early intervention
intervention, 185–87 team, 262
and Individualized Family Service and role of pediatric audiologists, 186
Plans, 277–78, 282, 285, 293, 296–300 and selection of early intervention
and informed decision making, 88–91 specialists, 25
and interdisciplinary perspectives, and sociocultural and environmental
xvii–xviii considerations, 241
and knowledge and skills and speech-language pathologists, 6
document, 17, 19 communication planning, 121–22
and linguistic and cognitive communication-promoting activities, 246,
development, 234–36, 236–37, 237–41, 248, 259–60, 261
242–45, 254–62 communication skills, 11, 93, 206–7
334  Index

communicative feedback, 59 and self assessment, 26, 27

Communities of Practice (COP), and specialized skill sets, 19–24
43, 44–45 and support for families, 190
community resources, xvi, 5, 19, 77, 109 See also specific skills and areas of
competence and competencies knowledge
and ASL/English Bilingual approach, complexity of deafness, 19
250, 253 complex medical syndromes, 182
and challenging national contexts, 307 comprehensive health care, 308
and coaching and mentoring, 57 Compton, M., 246
and collaboration with deaf and conciliatory feedback, 59
hard-of-hearing community, 136, 145 conductive hearing loss, 175
and continuous learning, 61 Connected Educator model, 44
core competencies, 4, 14 Connected Learning Communities, 42–43
and coursework for professionals, 56 Consensus Conference on Effective
cross-cultural, 93, 294 Educational and Health Care
and cultural environment, 67 Interventions for Infants and Young
culturally competent system of care, 294 Children with Hearing Loss, 13
and developmental assessment, 200, consultants, 145
208, 219, 223 continuous learning, 60
and early childhood education Côte d’Ivoire, 313
legislation, 9–10 Council for Exceptional Children (CEC),
and early intervention 8, 30, 62, 200
legislation, 116–17 Council on the Education of the Deaf
and educational background of (CED), 10, 16, 30, 112–13, 281, 289
specialists, 7 counseling, 78
and exemplary practice, 38–40, 41 co-visits, 296
and family-centered practice, 66, 77–80, Crace, J., 275–301
83, 85–86, 91, 93–94 criterion-referenced assessments, 211–12
forms of, 45–49 Cued Speech, 128, 239
and hearing screening and culture and cultural competencies
evaluation, 170 and accountability, 9
and hiring early intervention activities promoting, 191
specialists, 25 and ASL/English Bilingual
and Individualized Family Service approach, 252
Plans, 276, 277, 291, 293 and challenging national contexts, 306,
and informed decision making, 89 308, 314–22
and knowledge and skills of and collaboration with deaf and
professionals, 4, 15–16, 17, 18, 28–29 hard-of-hearing community, 138–43,
and legislative/policy environment, 106 145, 152, 155, 156–57, 159
and linguistic and cognitive cultural capital, 76
development, 234, 235–36, 243–44, cultural diversity, 93
247, 249, 262 cultural identity, 140–41
and listening and spoken language culturally competent system of
approach, 256 care, 294
and needs of early intervention and Deaf Culture identification, 40n
professionals, 4 and developmental assessment, 203,
and professional confidence, 60 204, 209, 214, 217
and role of parents and professionals, and early intervention legislation, 113
xi–xiii and exemplary practice, 39, 40
 Index  335

and family-centered practice, Deaf Culture

79–81, 80, 86 and collaboration with deaf and
and family involvement, 75–77 hard-of-hearing community, 138,
and family partnerships, 66–67, 93 141–43, 156
and family traditions, 152–53 and Deaf Mentor Curriculum, 301
and home environments, 68 and educational background of
and IDEA Part C policy mandates, 28 specialists, 6
and Individualized Family Service and exemplary practice, 40
Plans, 278, 291–93, 298 and knowledge and skills
and informed decision document, 19
making, 88–89 recommended resources, 162
and knowledge and skills See also Deaf Community
document, 15 deaf education
and linguistic and cognitive and early intervention legislation, 13
development, 236, 240–41, 245 and evidence-based practices, 114
and listening and spoken language and family-centered practice, 81
approach, 261 and hiring early intervention
and “medical home” concept, 180–81 specialists, 18
and professional’s relationships with and the Individualized Family Service
families, 69–70 Plan, 112
recommended resources, 96, 97, and Individualized Family Service
162, 163 Plans, 277
and Social Justice Framework, 71–72 and listening and spoken language
social stigma associated with deafness, approach, 261
79, 314, 318–19 and sign language instruction, 116
and specialized skill sets, 19 Deaf Mentor Program
See also Deaf Community; Deaf Culture and ASL/English Bilingual
“curse of knowledge” barrier, 48–49 approach, 253
and circles of support, 284
daily activities, 290–91 and collaboration with deaf and
Daniels, M., 249 hard-of-hearing community, 146–48,
Deaf and Hard of Hearing Infants 150–51, 154, 155–60
Toddlers and their Families and Individualized Family Service
(ITF) Interdisciplinary Graduate Plans, 284–85, 288, 292, 293
Certificate Program, xvi–xvii Deal, A., 279
Deaf and Hard of Hearing Role Model decision making
Program, 148–50, 154 best practices and policy
Deaf Children’s Bill of Rights (DCBR), recommendations, 124
123, 134n and children with developmental or
Deaf Community physical conditions, 182
and collaboration with deaf and and culturally competent system of
hard-of-hearing community, 138, care, 294
139–41, 142–43, 147, 155–56, and early intervention legislation, 114
157–58 and efficacy of communication and
and Deaf Culture identification, 40n language pathways, 126
and legislative/policy environment, 105 and family-centered practice, 78, 80, 82
professional collaboration with, 136 and family involvement, 74
and specialized skill sets, 19 and family partnership dynamics, 67
See also Deaf Culture and family well-being, 73
336  Index

decision making (Cont.) and specialized skills, 18

and hiring early intervention developmental emergencies, 185
specialists, 25 Developmentally Appropriate Practice
and home environments, 68 (DAP), 291–93
and informed decision making, 88–91 developmental progress, 211–12
and knowledge and skills diagnostic technologies, 309
document, 19, 24 digital technology and tools, 39,
and listening and spoken language 52–56, 60, 90
approach, 261 direct service, 156–57
and personal learning agendas, 47 disabilities
and self assessment, 26–27 and challenging national contexts, 306
and Social Justice Framework, 72 and collaboration with deaf and
DeConde Johnson, C., 297 hard-of-hearing community,
deficit model, 318 142, 155
DeMoss, Wendy, 54 in conjunction with hearing loss, 5
developing countries, 90, 138, 174, and developmental assessment, 202,
 305–22 205, 209, 209, 217
development, childhood. See cognitive and early childhood education
abilities and development; policy, 7
developmental assessment; language and early intervention legislation, 109,
acquisition and development 112, 120
developmental assessment and efficacy of communication and
approaches to, 210–14 language pathways, 127
best practices, 223–24 and exemplary practice, 40
defining, 203–4 and family-centered practice, 79
feedback to families, 220–23 and family/professional collaboration, x
impact of deafness on and Individualized Family Service
development, 201–3 Plans, 276, 281, 288
and Individualized Family Service and knowledge and skills
Plans, 296 document, 21–22
principles of, 204–7 and Social Justice Framework, 71
and progress monitoring, 214–17 social stigma associated with, 65, 79,
selection of assessment materials, 219–20 314, 318–19
and skilled professionals, 207–10 sociocultural and environmental
special considerations for assessing considerations, 241
infants and toddlers, 217–19 and state early intervention
usability of results, 220 systems, 191
developmental delays United Nations convention on, 124
and challenging national contexts, See also Individuals with Disabilities
306, 316–17 Education Improvement
and developmental assessment, 202, 217 Act (IDEA)
and early intervention legislation, 110, discrimination, 318
113–15, 119–20, 123 dispositions, 11–12, 39
and EHDI legislation, 107 distance learning, 159, 291
and importance of early diversity
intervention, 185 and ASL/English Bilingual
and Individualized Family Service approach, 235–36
Plans, 286 and assessment teams, 209
and knowledge and skills document, 21 and child-rearing practices, 317
 Index  337

and collaboration with deaf and early hearing detection and intervention
hard-of-hearing communities, 155 (EHDI)
and culturally competent system of best practices and policy
care, 294 recommendations, 125
and culturally meaningful practices, 320 and challenging national contexts,
and culturally sensitive early 308–9, 315
intervention services, 315 and collaboration with deaf and
and the Deaf Community, 140 hard-of-hearing community, 137,
and Deaf Culture, 142 143–44, 145, 153
and developing world contexts, 308, and early intervention
309, 314 legislation, 117–18
and early identification of hearing and EHDI legislation, 107–9
ability, 4 and importance of early
and EHDI systems, 108 intervention, 185–86
and evidence-based practices in early and knowledge and skills
intervention, 114 document, 16–17
and family involvement in hearing recommended resources, 62, 63
interventions, 69–70, 76, 96, 179 early identification
Hintermair on, xiii–xiv best practices and policy
and knowledge and skills recommendations, 125
document, 15, 28 and challenging national contexts,
and Personal Knowledge 311, 314
Management, 51 and developmental assessment, 202
and scholarly collaboration, xvii and early intervention legislation, 114
and social justice framework, 72 and efficacy of communication and
Division for Early Childhood (DEC), 7, language pathways, 128
200–201, 218 and hearing screening and
Dromi, E., 5 evaluation, 177
dual sensory involvement, 189 importance of, 185–87
Dunst, C., 279 and listening and spoken language
dynamic learners, 179 approach, 257, 259
and needs of early intervention
early childhood development, 67, 156. professionals, 4
See also cognitive abilities and recommended resources, 63
development; language acquisition sociocultural and environmental
and development considerations, 241
early childhood education (ECE), 6, 7–12, Early Intervention Program for Infants
288, 309 and Toddlers with Disabilities, 8
Early Childhood Outcomes (ECO), early intervention programs
201, 286 and collaboration with deaf and
early childhood special education (ECSE), hard-of-hearing community, 136–38,
5, 7–8, 24, 28, 78, 286 143–44, 145, 148–49, 151, 153, 154, 155,
Early Childhood Technical Assistance 157–58, 160
Center (ECTA), 9, 201 and family-centered practice, 81
Early Detection, Diagnosis, and importance of, 4–6
Treatment Regarding Hearing Loss legislative and policy initiatives, 12–14,
in Newborns and Infants Act, 107 107–9, 109–23, 124–26, 126–28
Early Head Start National Resource and needs of early intervention
Center (EHSNRC), 201 professionals, 3
338  Index

early intervention programs (Cont.) Estabrooks, W., 256

and professional learning, 39 ethics
and research, 27, 107, 114, 118, 126–27, 128 and challenging national contexts,
early intervention services, 171, 184–87, 313–14, 320n
190, 191 and early childhood education
early sensory experiences, 234–35 policy, 13
ear-nose-and-throat (ENT) physicians, 24, and efficacy of communication and
69, 177, 183, 187, 312 language pathways, 126
East Africa, 318–19 and exemplary practice, 39
Easterbrooks, 185, 202, 203 and IDEA Part C policy mandates, 28
ecological systems model, 68 and knowledge and skills
economic diversity, 76, 93, 307, 310, 315 document, 24
education evaluation. See hearing assessments
diversity in, 93 (screenings and evaluations)
of early intervention specialists, 6–7 evidence-based practices
educational philosophies, 238 and ASL/English Bilingual
and family-centered practice, 78 approach, 250–54
and family involvement with and audience for book, xx
professionals, 75–78 best practices and policy
See also professional learning and recommendations, 125
development and collaboration with deaf and
Education for All Handicapped Children hard-of-hearing community, 143
Act, 278 and competency areas, 29
efficacy of communication and language and developmental assessment, 219
pathways, 126, 128. See also and early childhood education
accessibility of language policy, 8, 13
embedding knowledge, 60 and early intervention
emotional skills and well being, 87, legislation, 113–14
189–90, 206, 285 and informed decision making,
empathy, 208 89–90
employment discrimination, 318 and interdisciplinary collaboration, 261
empowerment and knowledge and skills
and coaching process, 59 document, 17, 24
and developing world contexts, 318 and legislative/policy environment, 106
and family-centered services, 80 and linguistic and cognitive
and family involvement in hearing development, 235, 246
interventions, 78, 180 and listening and spoken language
and family-oriented early approach, 256
intervention, xiii exemplary practices, 38–39, 41–42
and family-professional experimentation, 72
partnerships, 84 expertise, 48–49, 79, 208–10, 209.
and informed decision making, 91 See also specific specialist areas
and Professional Learning expressive communication
Communities, 43 continuum, 239
English, coded forms of, 239 extended family
environmental considerations, 220, and challenging national
240–41, 248 contexts, 315–16
Erikson Institute, 56 and circles of support, 284, 284
Erting, C., 244 and home languages, 245
 Index  339

and informed decision making, 89 impact during early years, 67–74

and involvement of deaf adults, 151 and Individualized Family Service
eye examinations, 184 Plans, 277, 280, 282, 282, 293
and information processing, 178–80, 179
face-to-face learning and informed decision making, 88–91
and digital tools, 53–56 involvement with professionals,
and exemplary practice, 38, 43 75–78, 92–93
and family involvement with key principles of, 80
professionals, xiii and knowledge and skills
and guidelines for working with document, 19, 21
families, 91 and listening and spoken language
and interdisciplinary graduate approach, 256
studies, xvii and needs of early intervention
and personal knowledge professionals, 3
management, 52 and personal learning agendas, 42
family-centered philosophy and practices and professional learning activities, 49
and auditory-verbal practice, 259 and reactions to screening
and benefits of role model programs, 151 process, 176–78
and challenging national contexts, recommended resources on, 97
315–16, 318 role in early intervention, 74–75
communications within, 242–45 and self-assessment, 25, 26–27, 27
and culture of accountability, 9 and specialized skill sets, 19, 28
and developmental assessment, strength-based focus, 94
204–5, 214–16 family practitioners, 181
and digital tools for professionals, 52 fathers, 84
and dispositions of professionals, 11 feedback, 59, 220–21
and early childhood education Fenichel, E., 9
policy, 8, 15 flexibility in programming, 84–85
and early intervention legislation, 14, FM systems, 152, 203, 255
108, 115 Free Appropriate Public Education
and educational background of (FAPE), 119
specialists, 6 functional behavior analysis, 213–14
and family culture, 159 functional communication, 247
and family decisions, 19 functional language, 260
and family-directed assessment, 111, 279 functional needs, xii
family involvement with professionals,
xii–xiii Galinsky, Ellen, 53
family-professional partnership, 66–67, Gallaudet Research Institute, 244
78–88, 82–85, 91–94, 92–93 Gallaudet University, xv–xvi, 53, 182, 220, 293
and Family Quality of Life, 73–74 Gallegos, R., 275–301
and family-related competencies, 10, 91–92 games, 260
and family resources, 5 Gárate, M., 233–65
and family rights, xvi Geers, A., 258
and family support, 85–88 gender issues, 84, 241, 319, 321
and family-systems model, 279 genetic counseling, 184
and family-to-family support, 94 geographic location, 89
and family traditions, 152–53 Global Coalition of Parents of Children
guidelines for working with families, 91 Who Are Deaf or Hard of Hearing
and home environments, 67–69 (GPOD), 86, 90
340  Index

Goleman, Daniel, 45–46 and challenging national contexts, 306,

grandparents, 151 308–10, 311–13
Grant, N., 70 and children with developmental or
Gross National Income (GNI), 307 physical conditions, 183
Guide-By-Your-Side Program, 87 and collaboration with deaf and
hard-of-hearing community, 153
Hall, L., 42, 43, 44, 45, 52 and coursework for professionals, 56
Halus, K, 275–301 and developmental assessment, 214–15,
Hambry, D., 279 217, 226
Hands & Voices, 21, 87, 295 and early childhood education
Hanft, B., 46, 59 policy, 12, 15
Hanson, M., 68, 80 and early intervention legislation, 116
Hard of Hearing community, xi, 19. See and EHDI legislation, 107
also Deaf Community; Deaf Culture and family-centered practice, 79
Harper, Jessica, 199 and family involvement, 74–75
Hart, B., 67, 241, 242–43, 278 and family partnership with
Hart, J., 52–53 professionals, 94
Harvard Business School Press, 54 and family reactions to screening
Hassanzadeh, S., 128, 251, 252 process, 176–78
hearing aids and importance of early
and challenging national intervention, 185
contexts, 313–14 initial screenings, 170–71
and children with developmental or and knowledge and skills document, 22
physical conditions, 183 and linguistic and cognitive
and collaboration with deaf and development, 249
hard-of-hearing community, 146, and listening and spoken language
152, 155 approach, 254
cost of, 69 process described, 169, 172–74
and developmental assessment, 202 recommended resources, 63, 192
and early intervention legislation, 111 and Social Justice Framework, 72
and family-centered practice, 79, 84 and specialized skill sets, 22
and hearing screening and evaluation, standardization of, 4
169, 174, 177 and state early intervention systems, 191
and Individualized Family and strategies for framing
Service Plans, 275, 280, 286, results, 221–23
287, 297 hearing technologies. See assistive
and informed decision making, 88 listening technologies; cochlear
and knowledge and skills document, 23 implants
and linguistic and cognitive Henderson, A., 76
development, 235, 244 “high-risk” children, 312
and listening and spoken language Hintermair, M., ix–xiv, 77–78, 81, 87
approach, 187–88, 255 hiring practices, 18–25
and role of pediatric audiologists, 186 home environments, 67–69
and support for families, 190 Home Intervention and Language
and types of hearing conditions, 175 Opportunities Parent Education
hearing assessments (screenings and Service (HI HOPES), 319–21
evaluations) home languages, 244–45
best practices and policy home visits, 190, 291, 320–21
recommendations, 125 honesty, 92
 Index  341

hospital-based services, 312 requirements of, 280–82

Houston, T., 257 strategies and services, 287–97
Humphries, T., 143 and transition planning, 297–98
Hutchinson, N., 29, 199–226 whole child approach, 277–78
Individuals with Disabilities Education
IDEA Infant and Toddler Coordinators Improvement Act (IDEA)
Association, 110 and competencies of early intervention
identity issues, 146. See also Deaf specialists, 10
Community; Deaf Culture and developmental assessment, 201,
illnesses, 182 208, 215
imaginative learners, 179 and early childhood education policy, 7
implementation of services, 23, 72 and early intervention legislation, 8,
incidence of hearing loss, 174–76 109–11, 115, 118–23
incidental learning, 202–3 and family involvement, 74–75
India, 318 and importance of early
Individualized Education Plan (IEP), 9, intervention, 186
119, 121–22 and Individualized Family Service
Individualized Family Service Plan (IFSP) Plans, 275–77, 279–81, 285,
accountability, 9 288, 297
and children with developmental or intervention services
physical conditions, 183 recommendations, 174
collecting child information, 285–87 key provisions, 8
collecting family information, 283–84 and listening and spoken language
and community-based resources, 293–95 approach, 261
and culturally competent system of policy mandates, 27
care, 294 recommended resources, 129–30, 193
described, 275–77, 298–99 ineffective communication, 179
developing outcomes, 287 Infant Specialist Certificate, 56
and developmental assessment, 200 Infant Toddler Meaningful Auditory
and Developmentally Appropriate Integration Scale (ITMAIS), 212
Practice, 291–93 informal assessments, xii, 210
and early childhood education policy, 8 informal networks, 295
and early intervention legislation, information access, 85, 91
110–12, 122, 123 informed consent and decision making
and early intervention research, 27 best practices and policy
family and child outcomes, 282–83 recommendations, 124
family-centered practice, 278–80 and challenging national contexts, 318
and family involvement, 75 and developmental assessment, 203
home visits and daily routines, 290–91 and efficacy of communication and
and importance of early language pathways, 126
intervention, 186–87 and family-centered practice, 67, 85,
initial steps, 282 88–91
and interdisciplinary teams, 275, 295–97 and hearing screening and evaluation,
and knowledge and skills document, 23 169, 176, 180
and linguistic and cognitive and hiring early intervention
development, 262 specialists, 25
and listening and spoken language and knowledge and skills document, 19
approach, 255 and listening technologies, 188
and natural environments, 288–90 and professional dispositions, 11
342  Index

infrastructure, 308–9 and developmental assessment, 201, 207

inner ear, 173–74 and early childhood education
in-person learning, 53–56 policy, 13–14
in-service training, 6–7 and early intervention legislation, 107, 116
interdisciplinary approaches and exemplary practice, 41
and children with developmental or and family-centered practice, 81–82
physical conditions, 182, 183–84 and importance of early
and collaboration with deaf and intervention, 185
hard-of-hearing community, and Individualized Family Service
135–36, 155 Plans, 277
and competencies of early intervention and informed decision making, 90
specialists, 10 and knowledge and skills document,
and developmental assessment, 199, 17–18, 24
200, 206–7, 207, 215, 223 and linguistic and cognitive
and exemplary practice, 39 development, 245
and family-centered practice, 82–85, 87 and “medical home” concept, 181
and family involvement, 75, 77 and policy recommendations, 129
and family-professional recommended resources, 130
partnerships, 82–85 and standardization of hearing
and graduate programs, xvi–xviii assessments, 4
and IDEA Part C policy mandates, 28
and Individualized Family Service Keilty, B., 291
Plans, 275–77, 280, 282–83, 285, kinesthetic stimuli, 234–35
287–89, 292–93, 295–97, 299 kinship networks, 68
and legislative/policy environment, 128 knowing-doing gap, 54
and linguistic and cognitive Knowledge and Skills of Early
development, 234, 235–36, 246 Intervention Providers
and listening and spoken language and competencies, xx, 28–29, 46–47
approach, 260–62 and developmental assessment, 209
and personal learning agendas, 43, 44 development of, 16–18
and professional learning activities, 51 and dispositions, 11
and specialized skill sets, 24 and exemplary practice, 41
international guidelines, 315 initiatives focused on, 13
Internet resources, 90, 159, 179 and peer mentoring, 60
interpreters, 221, 223 policies and initiatives of, 14
Israel, 82 potential applications, 18–28
premise of, 15–16
Jackson, C., 69, 91 and self-assessment, 26–27
Jarche, H., 51 and specialized skill sets, 18
Joint Committee on Infant Hearing suggested activities, 62
(JCIH) Knowles, M., 53
best practices and policy Koester, L., 73
recommendations, 125 language acquisition and development
and challenging national contexts, 308 and challenging national contexts, 314
and children with developmental or and early communication, 236–37
physical conditions, 183 language mapping, 237
and collaboration with deaf and and specialized skill sets, 20, 28
hard-of-hearing community, 143 technology for, 188–89
and competency areas, xx, 28–29 and whole child approach, 278
 Index  343

Laurent Clerc National Deaf Education and early intervention legislation, 122

Center, 249 and informed decision making, 88
Learning Guidelines for Infants and and linguistic and cognitive
Toddlers, 50 development, 235–36, 237, 250
learning opportunities, 295 and listening and spoken language
learning styles, 178–79, 278 approach, 255
Least Restrictive Environment (LRE), 119 role in early intervention, 187–89
Lederberg, A., 289 See also assistive listening technologies
legal standards for health care, 308–9 Losardo, A., 203, 205, 212–13
Leigh, Irene, xiii–xiv Luckner, J., 261
Lenihan, S., 6, 233–65 Luterman, D., 182
Leong, Kimberly (Tarasenko), 29 Lynch, E., 68, 80
Linder, T., 214 Lytle, L., 146, 169–94
linguistic skills
and assessment protocols, 217 MacArthur Bates Communicative
and developmental assessment, 206 Development Inventory, 212
and diversity, 93 Marschark, M., 113
and specialized skill sets, 19 Massive Open Online Courses
Listening and Spoken Language approach (MOOCs), 56
and auditory-verbal practice, 256–60 Mayberry, R., 240, 253
and cochlear implantation, 258 McCollum, J., 10
described, 254–55 McWilliam, R., xii
and digital tools for professionals, 53 Meadow-Orlans, K., xxii, 6, 73
and early intervention legislation, 111, medical home, 180–84, 193
117, 122 medical issues, 296
and early intervention resources, 263 mentoring, 57–60
and efficacy of communication and microblogging, 52
language pathways, 126, 128 middle ear, 173, 174
and evidence-based research, 256 Mitchiner, J., 252
and exemplary practice, 40 mixed hearing loss, 175
and importance of early Model for Listening, 259
intervention, 186 modeling of learning strategies, 58–59
and Individualized Family Service modified intervention approaches, 21
Plans, 289–90, 293, 295 Moeller, M. P., 3–31, 239, 243
and interdisciplinary Morford, J., 251
collaboration, 260–62 mothers, 85, 147, 252
and knowledge and skills document, 23 motor skills, 206, 222–24
and legislative/policy environment, 105 multicultural environments, 69–70, 199
and linguistic and cognitive multidisciplinary teaming, 206–7, 207
development, 235, 241, 242, 249–50 multigenerational families, 315–16
and listening skills, 259–60 multilingualism, 213, 244–45. See also
and listening technologies, 187, 255 bilingualism
recommended resources, 63, 95, 300 multiple medical conditions, 181
listening technologies music, 128, 149
and ASL/English Bilingual approach, 254
and collaboration with deaf and Namibia, 309
hard-of-hearing community, 139, 148, National Association for the Education of
151–52, 155 Young Children (NAEYC), 7, 11, 31,
and developmental assessment, 220 201, 225, 277–78, 292
344  Index

National Association of State Directors of and professional learning activities, 51

Special Education, 220 recommended resources, 129–30
National Association of the Deaf (NAD), 143 natural language, 240, 248
National Black Deaf Advocates (NBDA), 143 negative feedback, 59
National Center for Cultural neuroimaging, 251
Competence, 80 neuroscience, 54
National Center for Hearing Assessment Nevins, M. E., 37–63
and Management (NCHAM), 62, 63, Newborn and Infant Hearing Screening
110, 192, 226, 301 and Intervention Act, 12
National Center for Infants, Toddlers, and newborn hearing screenings
Families (Zero to Three), 200 best practices and policy
National Council for the Accreditation of recommendations, 125
Teacher Education (NCATE), 11 and challenging national contexts,
National Deaf Children’s Society, 82, 85, 309, 311–12
90, 97, 261 and collaboration with deaf and
National Early Childhood Assessment hard-of-hearing community, 153
Project: Deaf/Hard of Hearing and early childhood education
(NECAP), 118 policy, 12, 15
national health standards, 308–9 and family-centered practice, 79
National Information Center for and family involvement, 74
Children and Youth with Disabilities and hearing screening and evaluation,
(NICHCY), 281 171–72, 176
National Institutes of Health (NIH), 108 and knowledge and skills document, 22
National Parent Project, 91, 92–93 and linguistic and cognitive
National Research Council, 292–93 development, 249
National Scientific Council on the and listening and spoken language
Developing Child (NSCDC), 201 approach, 254
national standards, 50 process described, 169
native sign language recommended resources, 63, 192
and ASL/English Bilingual approach, 252 and specialized skill sets, 22
and collaboration with deaf and and standardization of hearing
hard-of-hearing community, 140, assessments, 4
142–43, 156 New Mexico Family Infant and Toddler
and early intervention legislation, 119 Program (NM FIT), 283–84
and family-centered practice, 87–88 Next Generation, 53
and informed decision making, 89 Niemeyer, J., 246
and knowledge and skills Nigeria, 312
document, 19–20 Nittrouer, S., 127
See also American Sign Language nonnative English speakers, 65
(ASL); sign language non-specialist staff, 312–13
natural environments for learning norm-referenced assessments, 210–21
and challenging national contexts, 321 nurse practitioners, 181
and collaboration with deaf and Nussbaum, D., 169–94, 239
hard-of-hearing community, 156 Nussbaum-Beach, S., 42, 43, 44, 45, 52
and developmental assessment, 205 nutrition, 296
and early childhood education policy, 8
and early intervention legislation, 112–13 observation checklists, 212
and Individualized Family Service Office of Special Education Programs,
Plans, 281, 288–90 201, 216
 Index  345

Oliva, G., 146 planning and implementation of

Olson, S., 135–63 services, 277
online education, 50, 56 planning of services, 23, 28
ophthalmologists, 183–84 play-based assessment, 214
Otoacoustic Emissions (OAE) tests, playgroups, 284, 289, 295, 297–98
22, 171–72 Porter, Ann, 65–97
otolaryngology, 116, 183, 312 portfolio assessment, 212–13
outer ear, 174 potential, 150–51
premature infants, 181–82
Padden, C., 143 preschool programs, 295, 297
parents Pressman, L., 85
and challenging national contexts, 315–16 primary caregivers, 73, 89, 122, 151,
and circles of support, 284, 284 212, 290
counseling and training, 122–23 primary care physicians, 24, 181,
deaf parents, 87–88 183–84, 187
and family communication primary care providers (PCP), 181
dynamics, 242–44 Principles of Adult Learning, 53–54
and family involvement with professional audiences, ix, x–xi
professionals, xiii, 76–78, 318 professional learning and development
parent-implemented interventions, 246 and ASL/English Bilingual approach, 252
reactions to screening process, 177–78 and coaching and mentoring, 57–60
and socioeconomic status, 241 and collaboration with deaf and
strategies, 76–77, 85–86, 87–88 hard-of-hearing community, 144
passive language learning, 316 and competency areas, 9–10, 29
patience, 93 and coursework, 56
pauses, expectant, 290 developing and sustaining exemplary
pediatrics practice, 38–39, 41–42
and family responses to initial and digital tools, 39, 52–56
screenings, 176, 178 early intervention goals of, 49–52
and “medical home” concept, 181 and early intervention legislation, 111,
pediatric audiologists, 169, 171, 172–73, 117, 123
184, 186 and Individualized Family Service
peer relationships, xiii, 60 Plans, 285, 289
permanent hearing loss, 173–74 and knowledge and skills
Personal Knowledge Management document, 16, 18
(PKM), 50–52 and learning agendas, 42, 42–49
personal learning agendas, 42–49 and needs of early intervention
Personal Learning Networks (PLNs), professionals, 3
43–45, 49 ongoing planning for, 60–61
personal relationships, 189–90 purpose of, 49–52
personnel preparation programs, 10 qualifications, 14
Petitto, L., 240, 242, 251–53 recommended resources, 62, 96, 300
phonology, 239 and self assessment, 25, 26
physical development, 5, 21, 285 and special skill sets, 24
physical therapists, 288 standards, 8
physician’s assistants, 181 Professional Learning Communities
Pipp-Siegel, S., 85 (PLCs), 43, 45, 51, 60
Pittman, P., 135–63 profound hearing loss, 173–74
placement services, 121 progress monitoring, 214–17
346  Index

psychology and psychologists, xvii, 116–17, self-talk, 290

153, 154 sensorineural hearing loss, 173–74, 175
psychosocial development, 177, 316 Shared Reading Program, 293
Putz, Karen, 160 Sharma, A., 237
Shoup, A., 169–94
qualifications for early intervention signed English, 147, 147n
providers, 16 sign language
Qualified Providers principle, 15 continuum for processing and using
quality of life issues, 147 language, 238–40
questionnaires, 212 and developmental assessment, 203–4
and educational background of
Raimondo, B., 105–30 specialists, 6–7
and family-centered practice, 79
receptive communication continuum, 238 and family support, 85
referrals, 170 and home languages, 245
reflective practices, 5 and listening and spoken language
relegated periphery, 289 approach, 254, 256–57
religious culture, 152 See also American Sign Language
resource-oriented approach, 81 (ASL); native sign language
risk factors, 312 singing, 149
Risley, T., 243 SKI-HI Deaf Mentor Program,
Robbins, A., 244–45 147–58, 249
role models Skype, 60, 159
and collaboration with deaf and Smith, J., 259–60
hard-of-hearing community, 137–38, Snyder, P., 113
144–55, 157–60 social development
and early intervention legislation, 123 and competencies of specialists, 10
and Individualized Family Service and developmental assessment, 203, 206
Plans, 293 and emotional well-being, 190
See also deaf advisor; deaf mentor and Individualized Family Service
role-playing, 160, 260 Plans, 285, 289
Rosetti, L., 249 social interaction, 143, 246, 247
Rossi, K., 249, 259–60 social isolation, 146
routines-based interview, 283–84 Social Justice Framework, 70, 71–72
rural communities, 135, 146, 159, 305, 320 socially responsive practices, 19
social media, 52–53, 143
Sarimski, K., 77–78 social relationships, xiii, 216, 286, 297, 319
Sass-Lehrer, M., x, 3–31, 37–63, 65–97, social status, 76
135–63, 252 social stigma associated with deafness, 79,
scheduling issues, 77 314, 318–19
Schmeltz, L., 178, 179 social workers
School for the Deaf, 288 and children with developmental or
screenings. See hearing assessments physical conditions, 182
(screenings and evaluations) and collaboration with deaf and
Section 504 of the Rehabilitation Act, 120 hard-of-hearing community,
self-assessment, 25, 26–27, 294 137, 153–54
self-esteem, xiii, 189, 223 and early intervention legislation, 117
self-help skills, 206 and family-centered practice, 78
self-observation, 58 and family involvement, 75, 77
 Index  347

and interdisciplinary perspectives, spoken language

xvi–xvii and ASL/English Bilingual approach,
and personal learning agendas, 43 138, 221, 235, 250–54, 260–64
sociocultural considerations, 240–41 and auditory-verbal practice,
socioeconomic status, 241 6–7, 256–60
Somalia, 312 and collaboration with deaf and
South Africa, 279, 309, 312, 316 hard-of-hearing community, 148
Spahr, T., 237 continuum for processing and using
Spanish, 245 language, 238–40
special education, 120. See also early and early intervention legislation, 111
childhood special education (ECSE) efficacy of communication and
specialized knowledge and skills language pathways, 126
and Developmentally Appropriate and family-centered practice, 85
Practice, 292 and listening and spoken language
and educational background of approach, 290
specialists, 6 and listening technologies, 188
and family involvement with spoken language services, 116–17
professionals, 77 spontaneous communication, 247
and family support, 87 staffing issues, 51
and hearing technologies, 15 stakeholder participation, 14
and Individualized Family Service St. John, R., 169–94
Plans, 299 Stokoe, W., 142
key competency areas, 18, 19–24 Störbeck, C., 305–23
policy initiatives on, 13 storytelling, 148, 259–60
See also specific specialty fields Stredler-Brown, A., 3–31, 4, 6, 16, 18, 201,
speech-language pathology 210–11, 212, 213, 215–16
and collaboration with deaf and subspecialty referrals, 183
hard-of-hearing community, 135, supervision, 157
136, 153 Supplement to the 2007 JCIH Position
and developmental assessment, 199 Statement: Principles and Guidelines
and early intervention legislation, 111, for Early Intervention After
112, 115, 116 Confirmation That a Child is Deaf or
and educational background of Hard of Hearing
specialists, 6 best practices and policy
and family-centered practice, 78 recommendations, 125
and family partnership dynamics, 65 and collaboration with deaf
and hiring early intervention and hard-of-hearing
specialists, 25 communities, 143–44
and Individualized Family Service and compliance of local programs, 129
Plans, 296 and core competency areas, xx, 29
and interdisciplinary perspectives, and exemplary professional
xvi–xvii practices, 41
and knowledge and skills document, 24 and family support for language
and listening and spoken language learning, 249
approach, 261 focus on early intervention, 14
and personal learning agendas, 43 and knowledge and skills
and training requirements, 5 document, 17–18
speech-language therapy, 105, 288 and sign language instruction, 116–17
Spencer, P., 73, 113 Swanepoel, D., 307, 309, 312–13
348  Index

Sweden, 251 visual, 23, 28, 113, 152, 155, 188, 239

Szarkowski, A, 199–226 See also cochlear implants; hearing
aids; listening technologies; visual
tactile technologies, 23, 28, 113, 155, technologies; specific devices and
188–89, 239 technologies
targeted newborn hearing screening teleintervention, 291. See also telepractice
(TNHS), 312 telepractice, 44–45
targeted support and training, 28 terminology issues, xviii
teachers, 6 text messaging, 143
team-based services, 206–7, 207. See also Thorp, E., 10
collaboration and partnerships; timeline for readiness, xiii
interdisciplinary approaches toddlers, 6
team-related competencies, 10 toys, 260
technology traditionalism, 79
and advocacy groups, 162 transdisciplinary teaming, 206–7, 207. See
and assessment results, 220 also interdisciplinary approaches
and cognitive development, 235–36, 237, transportation, 77, 83
250, 251, 254 Trivette, C., 279
and communication and language, 147 trusting relationships, 76
and communication planning, 122 Turnbull, A., 83
and coordinated care, 182 turn taking, 247
and deaf communities, 151–52, 155, 158, 159 Twitter, 52–53, 60
and distance learning, 291
and early childhood education policy, 13 United Kingdom, 313
and early hearing detection and United Nations Children’s Fund
intervention, 111, 291 (UNICEF), 307, 313
and exemplary practice, 40 United Nations’ Convention on the
and expertise in assessment teams, 208 Rights of Persons with Disabilities
and family relationships, 67, 69, 71, 75, (CRPD), 124
84, 85, 88–89 United Nations Population Fund, 307
and forms of hearing loss, 139 United States Preventive Services Task
and Individualized Family Service Force (USPSTF), 15
Plans, 281 Universal Newborn Hearing Screening
and knowledge and skills document, (UNHS), 15, 125, 311, 313
15–16, 28 University of Kansas, 73–74
and language acquisition, 187–89 U.S. Department of Education, 118,
and pediatric audiologists, 186 122, 201
and personal learning agendas, 42 Usher Syndrome, 184
and professional competence, 48, Utah State University, 147, 154
52–53, 60–61
and role models, 148 values and beliefs, 11, 70, 79. See also
and screening process, 171 culture and cultural competencies
and specialized skill sets, 19–20, 23–24 verbal exchanges, 85
and spoken language verification of skills, 3
acquisition, 254–57 vernix, 172
and symposium experience, 55 Victorian Deaf Education Institute, 63
tactile technology, 23, 28, 113, 155, video technology, 58, 85, 143, 291
188–89, 239 vision, 183–84, 234–35, 253–54, 312
technical assistance, 16 visual language
 Index  349

and ASL/English Bilingual approach, VL2. See Visual Language and Visual
250, 253 Learning Center (VL2)
and collaboration with deaf and vocabulary, 290
hard-of-hearing community, vocal play, 259
139–40, 142 Voluntary Service Overseas (VSO), 309
and digital tools for professionals, 53
and early intervention legislation, 117 web resources, 30, 50, 90, 179
and family-centered practice, 88 whole child approach, 206, 277–78
and importance of early Wilson, K., 259, 260
intervention, 185 Winton, P., 113
and linguistic and cognitive Wodaabe culture, 316
development, 238, 242 World Federation of the Deaf (WFD),
and listening technologies, 188 124, 163
Visual Language and Visual Learning World Health Organization (WHO),
Center (VL2), 53, 130, 161, 188, 194 310, 313
visual technologies Wu, C., 65–97, 257
and collaboration with deaf and
hard-of-hearing community, 152, 155 xenophobia, 320, 320n
and early intervention legislation, 113
and IDEA Part C policy mandates, 28 Yoshinaga-Itano, C., 105–30, 251
and knowledge and skills document, 23 Young, A, 86, 305–23
and linguistic and cognitive
development, 239 Zimbabwe, 305, 309
and listening technologies, 188 Zulu culture, 317