Independent Living Research Utilization

Key Components of Systems Change

First of Three Papers on
Unlocking the code of effective Systems Change

Prepared by:

Michael J. Kendrick,, Ph.D.

Darrell L. Jones, M.A.
Lee Bezanson, J.D.
Richard E. Petty, M.B.A.

January 2006
ILRU Community Living Partnership
National State-to-State Technical Assistance Center
A National Technical Assistance Program at
Independent Living Research Utilization

© January 2006

ILRU Program
2323 S. Shepherd, Suite 1000
Houston, TX 77019
713.520.0232 (Voice and TTY)
713.520.5785 (Fax)
http://www.ilru.org

Lex Frieden
ILRU Director

Richard Petty
Director
ILRU Community Living Partnership

Darrell Jones
Program Coordinator
ILRU Community Living Partnership

Publications Staff: Marisa Demaya, Sharon Finney, and Darrell Jones

ILRU supports community independence for people with disabilities through a

national program of research, education, consulting, and publications. ILRU is a
program of The Institute for Rehabilitation and Research (TIRR), a nationally
recognized, freestanding rehabilitation facility for persons with physical
disabilities. TIRR is a part of TIRR Systems, which is a not-for-profit corporation
dedicated to providing a continuum of services to individuals with disabilities.

This paper was developed under Grant No. 18-P-91554/6-01 from the U.S.
Department of Health and Human Services, Centers for Medicare & Medicaid
Services (CMS). The contents do not necessarily represent the official position of
CMS and no endorsement should be inferred.
 Table of Contents
I. INTRODUCTION................................................................................................................. 1
II. CHALLENGES IN DESCRIBING AND CREATING SYSTEMS CHANGE .............. 2
A. CONTEXT FOR CHANGE ........................................................................................................ 2
B. WHAT DO WE MEAN BY “
SYSTEMS CHANGE?
”.................................................................. 3
C. CONSIDERING THE SCOPE OF SYSTEMS CHANGES ................................................................ 4
D. SYSTEMS CHANGE CANNOT BE COMPLETELY PREDICTED OR CONTROLLED ....................... 5
E. THE PROSPECT OF PEOPLE-CENTERED SYSTEM CHANGES ................................................... 5
III. KEY INGREDIENTS OF SYSTEMS CHANGE .............................................................. 6
A. THE RIGHT LEADERSHIP AT ALL LEVELS............................................................................. 6
1. Essential Qualities for Systems Change Leaders............................................................ 6
2. Strategies for Recruiting and Developing Leaders......................................................... 7
B. STAKEHOLDER INVOLVEMENT ........................................................................................... 11
1. Diversity of Stakeholder Involvement ........................................................................... 11
2. Full Inclusion in the Change Process........................................................................... 11
3. Strategies for Creating Meaningful Stakeholder Roles ................................................ 12
4. Individual Roles and Group Dynamics......................................................................... 14
C. EQUALIZATION OF KNOWLEDGE ........................................................................................ 15
1. Value of Equalizing Knowledge.................................................................................... 15
2. Strategies for Equalizing Knowledge............................................................................ 16
D. SYSTEMS CHANGES MUST BE SUSTAINABLE ..................................................................... 18
1. Barriers to Sustainability.............................................................................................. 19
2. Strategies for Sustaining Systems Change.................................................................... 19
IV. CONCLUSION ................................................................................................................... 21
V. READING LIST.................................................................................................................. 22
 Acknowledgements
We gratefully acknowledge the gift of time and insights shared by Real Choice
Systems Change grantees during our onsite visits: New Hampshire Department
of Health and Human Services, Arkansas Division of Aging and Adult Services,
Connecticut Association of Centers for Independent Living, Connecticut
Department of Social Services, Long Term Care Authority of Tulsa, New York
State Department of Health and Broome County New York CASA, and Center for
Excellence in Disabilities at West Virginia University; and their numerous
associates. We also acknowledge the additional people beyond these who
attendedt he“ Unlockingt heCodeofEf f
ectiveSy st emsChange”col l
oquium in
Houston, January 2005.1 We thank those who assisted the authors by leading
colloquium discussion groups, including Melissa Wittman, Ernest McKenney, Jay
Klein, Dave Hasbury, and Lex Frieden. We also wish to thank Karen Kuralt and
Kaye Beneke for their expert editorial assistance. And finally, we are deeply
grateful to Melissa Hulbert and Cathy Cope of CMS; Jay Klein of CHANCE,
University of New Hampshire; and Leandre Waldo-Johnson of Boston College
Graduate School of Social Work, without whose support and guidance this work
would not have been possible.

1
A list of participants can be found at http://www.ilru.org/html/projects/CMS/colloquiumindex.htm

Key Components of Systems Change

I. Introduction
Over the past several years, staff members and partners of the Independent
Living Research Utilization (ILRU) team have provided technical assistance,
training, publications, and other support to the Real Choice Systems Change
initiative of the Centers for Medicare & Medicaid Services. As we conducted this
important work, we began to observe there were clear distinctions between those
programs that achieved (or showed real promise for) enduring change and those
programs that failed to realize their full potential. In 2004, after almost four years
of working with Real Choice grantees, we took the step of looking much more
closely at how to foster meaningful, sustainable changes in the social services
systems that support people with disabilities of any age. We identified six
outstanding projects that had received Real Choice Systems Change grants;
each of these projects initiated significant and beneficial change in their
respective states (Arkansas, Connecticut, New Hampshire, New York,
Oklahoma, and West Virginia). The chosen projects were diverse in many
respects, including --
 the scale, scope, and character of the service systems in place,
 the people and needs that were the focus of the changes,
 the types of participants involved in the change process,
 the changes being pursued, and
 the history and duration of the change process.

We asked representatives of these projects to reflect on their experiences and

share lessons they learned about systems change. We interviewed project staff
and consumer leaders. We wanted to know whether there were common factors
that are central to achieving people-friendly systems change.

In January 2005, ILRU continued its investigation by inviting representatives from

the six projects and other key Real Choice Systems Change leaders to a
colloquium to discuss key elements of meaningful and sustainable systems
change.2 The group spent 2 1/2 days in Houston in active dialogue focused on
three topics:
 Key components of systems change
 Features of a high-quality community service system

2
Readers interested in the original three papers used as catalysts to stimulate dialogue at the colloquium
may access them at http://www.ilru.org/html/projects/CMS/colloquiumindex.htm

Key Components of Systems Change - 1

 The promotion of self-direction and consumer control in service programs and
systems

From our study of successful programs and the recommendations and guidance
of the colloquium participants, we have developed three papers that address
these central aspects of the creation of enduring change.
In this paper, the first in the series, Key Components of Systems
Change, we attempt to create an overall framework for the
discussion of systems change and to give a summary of the
concepts discussed in all three papers. In addition, this paper
includes several specific recommendations that can be applied now
by any grantee, state, or program to enhance prospects of
achieving enduring change in home- and community-based
services.
The second paper in the series, Features of High-Quality
Community-Based Services, identifies the features of high-quality
integrated community services and the systems that support them.
It serves as foundation work for additional exploration and
discussion of what constitutes effective community services. The
paper will undergo continuing development in discussions with
representatives of projects and consumer leaders in states. The
authors believe the paper, in its current form, will augment
assessment of existing systems and planning of new or improved
systems and, after refinement, it will become an even more useful
tool for those involved in systems transformation.
The third paper in the series, Promoting Self-Direction and
Consumer Control in Home- and Community-Based Service
Systems, examines what contemporary social service systems can
do to promote consumer-directed services. We identify different
features that make a service "self-directed," and we identify
characteristics of successful consumer direction and
self-determination. As with the second paper, in its present form, it
serves as foundation work for additional dialogue and will also
undergo continuing development in discussions with
representatives of projects and consumer leaders in states.

II. Challenges in Describing and Creating Systems

Change

A. Context for Change

In many current disability support systems, people with disabilities, including

older adults, struggle with the difference between what the systems allow them to
do and their actual needs and potential. Many people involved in the current

Key Components of Systems Change - 2

systems –including care providers, family members, and the users of the
services themselves –long for systems that are more responsive to the needs of
people with disabilities. The New Freedom Initiative, which spawned the Real
Choice Systems Change program, was created to answer this need. Real Choice
Systems Change projects aim to change disability support services in ways both
large and small, so that users of these services have real, empowering choices
to make about the types of care they receive.

Real Choice Systems Change can seem a daunting undertaking when the
“sy st
em”i sputf or war dassomet hi
ngt hathasal ifeofi t
sownwi thpowerov er
people and communities. But systems are inanimate entities that are designed
by, acted upon, and used by people. It is people—individuals and people working
in concert—who bring change into the environments and communities of which
they are part. It is their will to change that begins the processes of mobilizing
constituencies for change. These changes can range from the miniscule and
invisible to ones that are prominent and far-reaching.

Idealists may presume that support service systems ought to change simply
because it is the right thing to do. Unfortunately, these systems do not exist
solely to benefit the people dependent upon them. They also have to contend
with the needs, pressures, and vested interests of many other parties. Changes
centered on individual needs often compete with the needs and priorities of
outside parties who may be more entrenched, more powerful, and difficult to
persuade about the merits of systems change.

This observation does not mean that systems cannot uphold the people they
support in an honorable and beneficial way. Some already do. But there are
many difficulties in creating or protecting people-friendly aspects of systems if
those aspects collide with other priorities and preferences. People-friendly
outcomes may require systems that are very different from those with less
people-centered outcomes. Discovering how to create and sustain people-
friendly support services is the focus of our research.

B. WhatDoWeMeanBy“Syst
emsChange?”

Thet er m“ sy stemsc hange”i sdi f

fi
cul
ttodefinepr eci
sely.Humans ervi
ceand
community systems rarely take the form of a single unified organization. Rather,
they are composed of many interconnected systems and subsystems, such as
hospitals, social workers, home care providers, community service organizations,
and even individual families. These groups are not always directly connected to
one another. For example, families and other informal caregivers are often the
backbone of any care system –yet many families remain remote and disengaged
from the formal service systems designed to assist them. When we refer to the
sy st
emsi nv olvedin“ systemschange, ”wear et al
kingaboutal lt
hes esy stem
levels, both formal and informal.

Key Components of Systems Change - 3

In describing systems change, it is often easier to focus on formal systems and
structures. However, descriptions of formal systems based mainly on hierarchies
and regulations may overlook the powerful roles that individuals and informal
relationships play within these systems. The values, attitudes, and relationships
of these individuals are especially important. In some cases, the conduct of
officials within the systems may contradict the stated goal of the systems. For
instance, officials may offer services that are little more than custodial
maintenance, when the services were meant to be empowering to recipients.

Even without a precise definition, we can still name and describe many types of
intentional systems changes. For example, some systems have been gradually
de-institutionalized, becoming more community based, more individualized, more
granting of individual control and direction, and better integrated with other
systems. This type of shorthand definition may not be precise enough for every
purpose, but it offers an adequate definition for people to use in discussing and
organizing systems change projects.

C. Considering the Scope of Systems Changes

Because formal systems can be quite complex, any discussion of systems

changeshoul ddist
ingui
shbet ween“ whol esy stem”c hangesandchanges
focused on a single component of the system. Changes at both levels can be
substantial and beneficial. The choice of where to begin a systems change
project depends largely on timing, opportunity, and the leverage of the people
initiating the change.

Systems change projects may focus on anything from minor system components
to major system components; they may also start with small subsystems and
then become gradually more comprehensive in scope. Additionally, while some
people involved in systems change may not be in a position to effect large-scale
changes, they may have leverage to effect changes in smaller systems
components. For example, in helping patients to make productive transitions
between acute inpatient care and community living, systems change advocates
might conceivably leave the overall hospital system largely intact. However,
considerable changes would be made in the specific hospital subsystems related
to discharge planning, and changes would also be required in the coordinating,
planning, and financing practices of local agencies that offer community-based
services.

We must not assume, however, that small component or subsystem changes are
easier to make due to their scale. Even small components may have well-
entrenched defenders and interest groups holding them in place. It may not be
any more difficult to make a large systems change than a small change if the
timing is right and the parties involved are well positioned.

Key Components of Systems Change - 4

D. Systems Change Cannot Be Completely Predicted or Controlled

Inplanningasy stemschange,i t’st

empt i
ngt oimagi net hatsoci alservice
systems are a type of apparatus that responds to rational external engineering
much in the way that a machine would. If this were true, talented agents of
change could foresee and guide all aspects of change. The resulting changes
would be largely predictable and would turn out exactly as intended.

In fact, however, systems are composed of both rational and non-rational

elements. In real life, intentions and logic compete with non-rational factors such
as vested interests, attitudes, habits, and expedience. As a result, real change
processes are complex, nuanced, and not entirely predictable.

People who expect systems changes to be easily managed may be caught by

surprise when changes unfold in unforeseen ways. This does not mean that all
aspects of change are unforeseeable or that change cannot be steered to some
degree with logic and rationality. It does mean, however, that changes to
complex systems involve a measure of uncertainty and risk. Not every attempt at
change will succeed.

Even problems with obvious solutions may not be fixable if the conditions needed
to effect the change are missing. People within the system must possess the
underlying will and values to overcome resistance to the proposed change. There
may be moral, cultural, and political factors in a community that prevent change.
At a given time, people and communities may be unwilling to endorse feasible
solutions that collide with the prevailing view of what is proper and needed. Only
if these dominant community views change can system changes be successful.
Thus, it is extremely important to stress community and constituency education
strategies in any systems change plan.

E. The Prospect of People-Centered System Changes

Change does not appear simply because it is needed. Nor will simply setting
people-centered goals and using people-centered vocabulary bring about
change. Real change requires both a vision of what might be possible and
needed, and people willing to do the difficult work of bringing these visions into
reality. In some cases, these struggles for change are multi-generational in
duration and may involve periodic setbacks and revisions of approach as
conditions change. They all are dependent on mobilizing people to engage
themselves in a committed way to make progress on key issues.

Realists recognize that many demanding challenges must be addressed before

beneficial changes can take place. These challenges are only partially
foreseeable at the outset or while a project is underway. So what must occur for
systems to meet the varied demands and to become or remain people-centered?

To answer this question, we need to know which theories and assumptions about
people-centered systems change are valid, and which others are misleading or

Key Components of Systems Change - 5

incorrect. What follows in this paper are some of the key factors repeatedly
identified by practitioners in the change process as being significant for them.

They suggest some common investments that can help facilitate change at the
local, state or national level. The effect of these can be catalytic and synergistic,
particularly when a number are simultaneously present.

III. Key Ingredients of Systems Change

Colloquium participants identified four key components of meaningful systems
change:
1. leadership at all levels
2. inclusion of stakeholders
3. equalization of knowledge
4. sustainability

This list of components is not intended to end discussion, but rather to inform
further work on our collective understanding of meaningful and sustainable
systems change.

A. The Right Leadership at All Levels

1. Essential Qualities for Systems Change Leaders

Leadership is central in mobilizing and influencing people. Effective
systems change requires experienced, realistic, and skillful leaders
who can cooperate effectively to spark progress and vision. The
colloquium participants described several qualities that are
essential for leaders of Real Choice Systems Change.
Different types of leaders are needed (such as bureaucratic,
technical, and advocacy leaders), and leadership must occur at all
organizational levels. No single leader can embody all the
knowledge and skills needed for systems change in a single
package. Leaders can and should come from various sectors –not
just from government offices, as some might presume. They can
include consumers, families, advocates, community providers,
neighbors, employers, academics, technical consultants, and
progressive professionals. Having the right kind of governmental
leadership can be a significant advantage, however, because
government systems can exert substantial influence toward
change.
Leaders from different institutions and areas of expertise should
work together for change through leadership alliances. Leadership

Key Components of Systems Change - 6

 alliances are loose networks where people share ties such as
values, ideology, beliefs, common interests, personal relationships,
and relationship networks. These commonalities can be quite
influential in both what gets done and how it is done. Such
networks usually start with existing relationships where there is
some measure of trust already. Over time, newcomers can
establish themselves as valued members of these informal
alliances as well, and over time, as valued members of the larger
community.
Leaders need practical operational skills as well as vision. Vision is
of course a key component of leadership, but it takes practical skills
to turn visions into reality. Colloquium participants noted that
effective leaders must also be competent, realistic, decisive, and
abl etogetal ongwi t
hpeopl e.Acer t
ain“pol it
icalsavvy”i srequi r
ed,
because systems change leaders must not only be adept at
preparing and planning for change, but they must also navigate a
maze of personal and institutional relationships to put their plans
into action. Leaders must be able to exercise caution and
discretion; they must be careful to avoid conflicts of interest. They
must be credible when speaking about the content of proposed
changes, and they must be prepared to meet the numerous
challenges that will arise throughout the change-making process.
Leaders must prepare for continuity in leadership. They do this both
in the ways they interact with governmental systems and other
types of leaders, and in the way they pave the way for their own
successors. In the case of dealing with governmental systems, it is
critical that systems change leaders operate in a non-partisan way
as much as possible. Turnover in state administration and
legislative branches can be deadly to emerging shifts in policy and
service delivery if players on all sides have not been educated or
persuaded about the value of the changes –or if political enemies
have been made by appealing more heavily to one side than to
another. This education and inclusion process should also be
extended to new people within the systems change movement;
these individuals will carry efforts forward when current leaders
leave their positions. The loss of informed staff, volunteers,
consultants, and advisors weakens and fragments corporate
knowledge.

2. Strategies for Recruiting and Developing Leaders

Of course, leaders with the range of skills described above do not
always appear on the systems-change scene fully formed.
Leadership recruitment and development are essential activities,
part of a continuous process within social institutions and
movements to generate a pool of leaders who can meet the

Key Components of Systems Change - 7

challenges involved in change. Our colloquium participants offered
a diverse range of strategies for investing in leadership
development.

Strategy #1: Add to and strengthen the leadership pool

When groups deliberately work to add new people to their
leadership and to provide all their leaders with opportunities to
develop their skills, chances for success increase. One example of
this type of development is the well-known“ Par tner si nPolicy
Maki ng”pr ogram suppor tedbyst at ePlanningCounci l
son
Developmental Disabilities. States participating in this program
learn how to identify consumers and families interested in
leadership, and then provide them with training, peers, and mentors
to strengthen their potential leadership contribution. In many states,
this program has been in effect for over a decade and represents a
comparatively long-term investment.
Many states, including Massachusetts, provide similar intentional
training and support not only to consumer and family leaders, but
also to staff, professionals, board members, and others. They offer
this training through a specially designed regional- and state-level
program sponsored by the State Department of Mental Retardation.
North Carolina developed a consumer and family training program
on leadership and advocacy through a partnership between the
state’
sConsumer Empowerment Division, the North Carolina
Planning Council on Developmental Disabilities, and the North
Carolina Council of Community Programs. This project was
under t
akeni nc onj unct
ionwi t
ht hestat e’sintr
oduct i
onofCons umer
and Family Advisory Councils as part of broader state reforms of
the mental health, substance abuse, and developmental disabilities
system.
The key is to invest in developing leaders who will create positive
changes by exercising personal and collective leadership. Although
there are many different models for recruiting and developing
leaders, any effective leadership training program must:
 target emergent leaders and localities
 institute a deliberate recruitment process
 implement a specific leadership development curriculum relevant to the
particular issues to be addressed
 establish necessary sponsorship and financing mechanisms

Key Components of Systems Change - 8

 implement measures to ensure continuity, follow up on training after it
has been delivered, and evaluate the overall effectiveness and impact
of the training program

Strategy #2: Develop leadership within state agencies and

community organizations
Systems change advocates should capitalize on potential leaders
already available within the agencies and organizations that may
implement home- and community-based services. But new
programs and heightened expectations require expanded
leadership development. Many state agencies and community
organizations have leadership development programs; however,
few include training on how to collaborate with constituent groups to
implement new approaches associated with modern home- and
community-based services.
Executives of state agencies and community organizations should
offer leadership training programs (or enrich existing programs) that
incorporate constituent involvement and consumer direction. Some
business models of customer-oriented quality management support
this approach. However, training must go further to help leaders
embrace the kind of shared leadership that fosters truly successful
service programs.
To help members of state agencies and community organizations
learn the unique skills required for consumer-directed systems, staff
development training should include these topics (along with more
traditional leadership topics):
 Shared vision: Work with broad-based constituencies as they create,
test, and continually validate a conceptual framework for service
programs.
 Values identification and clarification: Support identification of the
principles, standards, and qualities a group considers essential in
program design and implementation.
 Const ituentpar tners hips:Inv olvethe“ri
ght ”const i
tuenciesandpeopl e,
determining the desired background, skills, and qualities of those from
the community who should play leadership roles, ensuring they are
fully oriented to the programs in which they will be involved and that
they continue to be fully informed of the issues they are expected to
address. This area also involves knowledge of disability and
techniques for facilitating full involvement of all, including persons with
cognitive disabilities. Leaders should also have an understanding of
the different organizational structures that can be used in partnerships:
boards, task forces, advisory councils, etc.

Key Components of Systems Change - 9

 Working in partnership: Alter philosophical perspectives to create
openness to shared power as well as learn the techniques that
facilitate true partnership processes.
 Strategic planning, implementation, and evaluation in a power-sharing
environment: Engage in group planning and process techniques that
ensure constituents are continuously and fully informed of and involved
in planning and implementation. This includes reporting to and
securing guidance from constituent partners.

Strategy #3: Promote shared leadership through regular leadership

meetings
When leaders meet together to resolve an important matter, their
collective energies, resources, and constituencies can be unified
into a single focus. They are also able to talk directly with one
another to create a shared understanding. These two factors allow
consensus to emerge so that leaders can then take joint action.
Getting to joint action is not automatic. Joint meetings help create
the desired conditions for change, but they do not compel or assure
change. According to the West Virginia Real Choice grantees, this
type of shared leadership is important because it shows a
deliberate attempt to get many key leaders from as many
stakeholder groups as possible in the room together to prepare a
common statewide change agenda. Their experience with this
strategy was not utopian in its results, but it brought many
stakeholder leaders into greater agreement and alignment on
impor t
anti ssuesandpr ovidedaki ndof“ soci alcapitalasset”that
will serve as the foundation of future change. (For additional details
about t heWestVi r gi
niagr oup’ sexper ienc e,seet heirreportat
http://www.hcbs.org/files/40/1979/findcomground-1.pdf.)
One way to effectively convene leaders to establish and implement
a common agenda involves these steps:
 Involve leaders from all stakeholder groups in planning the process for
the meeting so that there is investment and ownership up front.
 Use a neutral facilitator who is familiar with long-term care and
community living concepts to keep the discussion going and assist the
group in finding common themes.
 Useapr ocessof“ appreciativeinqui ry”i
nwhichyouask,“What
’s
workingwel l
,whatcanwel earnf rom what’
sworkingwel
l,andhowcan
those lessons be applied to other areas?”
 Use a visioning process that enables the group to identify the current
status of the issues, the future goal and action steps for reaching the
goal, and the priorities of the action steps.

Key Components of Systems Change - 10

  Have a follow up plan with assignments to specific people, and then
actually follow up.

B. Stakeholder Involvement

1. Diversity of Stakeholder Involvement

Having key people involved from all stakeholder sectors is the next
essential ingredient that our colloquium participants agreed upon.
Stakeholders include:
 service recipients
 family members
 advocates
 state agencies and government representatives (including politicians)
who represent not just disability funding and services, but also
community planning and development, transportation and housing
services
 business people
 anyone affected by the inclusion or exclusion of people with disabilities
and older people from the community

2. Full Inclusion in the Change Process

Colloquium participants argued that change can and should be
negotiated across many groups, and that leaving people out of that
negotiation process can be costly. Including diverse stakeholders
makes it easier to reach consensus and develop vision –key
processes for solidifying disparate elements into functional
alliances. These stakeholder alliances enable people to act
collectively to unite their efforts, energies, and purposes.
Stakeholder discussion groups are valuable for formulating credible
and persuasive answers to questions that are raised about systems
change; the involvement of diverse participants allows people to
test and modify positions in front of the group, so that the questions
of many people are answered, rather than those of just a few.
Finally, the shared consensus and vision generated by these
groups also reduces the risk of losing momentum when leaders
leave. The vision takes on its own life and no longer depends on
anyoneper son’spr es ence.
In order to forge stakeholder alliances, change agents must first
identify who the stakeholder parties are, then identify what will bring
these groups to the table and keep them there. In the case of
stakeholders who may have an agenda that conflicts with the

Key Components of Systems Change - 11

 purpose of Real Choice Systems Change (for example, nursing
home administrators who may see community-based services as
threatening to their purpose and income), it may be necessary to
invest additional time into developing a relationship and educating
those representatives before actually including them at the table.
By engaging key stakeholders, several states generated support for
systems change efforts that led to a workable mandate. One state,
West Virginia, held an inclusive conference that brought a wide
range of stakeholders together to gradually build a shared vision
andc onsensus.Thats tat
e’ss pokes per sonsr epor t
edt hatt
hisevent
was a high-water mark in terms of recent systems change
developments. In Connecticut and New Hampshire, two small
towns marshaled an impressive range of initiatives affecting people
with disabilities. Subsequent efforts brought in new supporters and
stakeholders to the collective network and generated considerable
good will and momentum. In these instances, there were actually
many discussion tables rather than a single table, but the principle
of having the right people at the right table flourished and
expanded.

3. Strategies for Creating Meaningful Stakeholder Roles

Once stakeholders are identified and included in systems change
discussions, they must be involved in the change process in
authentic, substantive ways. Stakeholders must be active at all
levels of change (policy development, program development and
implementation, service delivery, monitoring and evaluation), and
each group must have real (not token) roles to play.
By attending to the voice of consumers, families, and communities,
leaders are more likely to develop support systems consistent with
what these groups actually want and need. In one state, a long-
term care agency sought consumer input so seriously and with
such systematic quality that it persuaded even doubting consumers
ssy
to have faith in the state’ stem changeagendaandt otakean
active role. The active ingredient is not that participation by
consumers occurs, but that leaders respect the voice of consumers
and unmistakably use consumer feedback to inform policy
decisions and directions.
Colloquium participants suggested two main strategies for
encouraging stakeholders to voice their opinions and contribute
substantively to change projects.

Strategy #1: Help people form social networks

People with social supports tend to function better than those who
are socially isolated. As witnessed in the peer support movements

Key Components of Systems Change - 12

in mental health and independent living, there is something about
solidarity with others who face the same challenges and concerns
that strengthens, encourages, and gives practical assistance to
“fell
owt ravelers.”
Networking and solidarity can help people in many other ways,
including the following:
Learning about resources Being able to sound people out
Hearing other perspectives Getting advice and counsel
Drawing strength in numbers Being able to assist others
Validating arguments and getting Creating pathways for joint
clearer information about what action
wor ksandwhatdoesn’ t
People are much more likely to pursue and stay with demanding
change agendas when they are well supported in their efforts by
like-minded allies. An investment in such networking may be more
fruitf
ulthanfirstmeet st heey e,bec ausei tcanhel pcreatea“ base”
for change through the making of a unified and mutually supportive
constituency.
There are many ways to help people find, start, and nourish
change-oriented networks. The key is simply to help people with
common interests find each other. Here are ways that you can
enable service recipients, families, and other stakeholders to share
perspectives, learn from each other, and support needed system
changes:
 Start networks by connecting people you know who have some of the
knowledge, interest and investment in the relevant issues.
 Make resources available such as a place to meet, staff to answer
questions, and other resources.
 Give advice when asked.
 Take their opinions seriously by taking feedback from the networks to
your formal advisory board and policymakers.

Strategy #2: Encourage stakeholder discussion groups to imagine

and design groundbreaking initiatives
Once social networks are formed, the next step in innovation is to
provide a forum where stakeholders can describe the
groundbreaking changes they need. For instance, stakeholders
mayf or
m mi ni
atur
e“thinkt anks”inwhi cht heyex ami nepar t
icular ly
vexing problems and generate proposals for change. These

Key Components of Systems Change - 13

 brainstorming sessions are often focused on specific challenges
such as social inclusion, individualization, home ownership, or
empower ment.Admi ttedly ,notallsuch“ t
hinktanks”areequal ly
successful, but by the same token not all problems are equally easy
to resolve.
In Oklahoma, a key state advisory group consisting of consumers
and families was formed to look deeply into many issues and
brainstorm ways forward. The group was given extensive support to
encourage their thinking and imaginative process. For example, in
this project --
 Participants were treated as partners in the systems change process;
this raises the value of their participation.
 Participants were given reading, research and reporting assignments
to support and facilitate the process of creative thinking.
 Small group activities were used to help participants analyze for
themselves the pros and cons of a policy, service, or procedure.
 Each participant was specifically asked for his or her opinion about the
problems and proposed solutions; this technique ensured that
everyone participated, and it gave quieter participants an opportunity to
speak without having to fight for the floor. People need multiple options
for offering input so that they can feel comfortable participating.
Asst akehol dergr oupshel ptodev elopnewi nit
iativ
es,i t
’si mportant
to remember that they do not have to invent projects that change
the world all at once. Small-scale projects can also challenge
established, conventional, and institutionalized practices. These
experimental demonstration projects take ideas from the drawing
board into the real world, where they can serve as instructive
examples of what could someday occur on a larger scale. They can
elevate the“ stateoft hear t
”ins ocialser vi
cesbymodi fyi
ngand
updat i
ngol dpr acti
ces,andmov eideast hatar e“ gemsi nt her ough”
into more polished and advanced approaches. When the results
are persuasive and compelling, others will more easily adopt and
disseminate them. The Cash & Counseling Demonstration
programs in Arkansas, Florida, and New Jersey are good examples
of this type of innovation.

4. Individual Roles and Group Dynamics

Finally, our colloquium participants noted that change leaders must
attend to individual roles and group dynamics if stakeholder
networks are to succeed over the long term. Without such attention,
some groups lose focus; other groups develop good ideas, but
hav et roubleput t
ingt hem intoact i
onbec aus ei ti
sn’tclearwhoi s

Key Components of Systems Change - 14

 supposed to do what. Some key strategies for keeping groups on
track include:
 defining what type of coordination is optimal
 creating clear priorities and strategies
 eliminating confusion about who is doing what by asking people to
clarify various roles in the change process
 directing potential supporters to appropriate entry points and entry
roles for newcomers to the work of change.
These steps can help eliminate questions about who has or will
take central responsibility for shaping the change process and who
will assist with various stages of implementing the changes.
By following the steps modeled by our colloquium participants and
other effective programs, change leaders have a good chance of
enabling consumers, families, and other stakeholders to develop
worthwhile initiatives.

C. Equalization of Knowledge

If leaders make a genuine effort to involve the diverse range of stakeholders

we’ vedescr i
bedabov e,theymustr ecogniz ethatt hepeopl eint hesenet works
will bring disparate levels of knowledge and understanding of issues to the table.

This can be seen as a barrier or an opportunity. If it is seen as a barrier, it may

be used as a reason to exclude certain people or groups from participating. Our
participants, however, believe that this situation offers an opportunity for
conveners to practice articulating the questions and issues more clearly.

1. Value of Equalizing Knowledge

Why is such practice valuable? Readiness for change, in both the
cultural and political sense, does not occur until enough people in
enough constituencies achieve consensus to prevail over the
dissenters. The process of achieving consensus and swaying
dissenter opinions takes both time and serious educational and
persuasive effort. Unanimous agreement is not required, but most
colloquium participants agreed that there must be sufficient
consensus among key constituencies to create a mandate for
action. Gaining this mandate is easier when much work has already
been done to raise consciousness and issues, dissect and evaluate
the arguments and proposals, and engage large numbers of people
in some kind of thinking, discussion, and deliberative process.
Just as importantly, equalizing knowledge is not a one-way conduit
from conveners to participants. Relationships among network

Key Components of Systems Change - 15

 members are strengthened when participants are allowed to name
their issues, discuss them extensively, and eventually describe
remedies that seem to offer the most hope for progress. While the
conveners share their knowledge of the issues with the
constituents, the constituents educate the conveners about their
own wishes and experiences. This mutual education process can
take a great deal of time, but it may be the only way that diverse
constituencies can get to a point where they understand the
nuances of the issues well enough to substantively pursue changes
to the system.
State agencies have an important role to play as well. Knowledge is
power, so if states are serious about empowering consumers and
families to have more control over their lives and a higher quality of
life –and if states are serious about empowering communities to
alter their infrastructures to be more inclusive –then they, too, must
work to equalize knowledge. Because states know more about the
policies, programs, and services within their vast range of control,
they can be valuable educators for stakeholder networks.

2. Strategies for Equalizing Knowledge

Knowledge can be imparted through a number of means, including
trainings, meetings, social occasions, conferences, special project
work, websites, and printed material. The key is meaningful and on-
going communication, in whatever form is best for a given issue.

Strategy #1: Prepare people to better understand key issues and to

apply critical thinking
To understand abstract, multi-sided issues, people need more than
a“ br oadst r
oke”pi ctureoft hos ei ssues–they need to know and
under st
andt hedet ail
s.Whenpeopl eare“ inthedar k”aboutt he
details of issues, they are less likely to be able to act; when they do
act, they are less likely to act with finesse and discipline. When they
are well informed, they can better participate in public issues
because they know what is at stake. Detailed information can be
helpful for advocates, politicians, activists, consumers, families, and
many others. In fact, in special education circles, family advocates
are regularly given instructive briefings on special education laws
and regulations to make their advocacy more effective.
Once people understand and master background facts, they can
then analyze the information and apply it. The analysis is often
what leads people to favor or to oppose change. For instance,
although institutional care is currently among the dominant support
systems for the elderly and for people with disabilities, many people
realize that not all these individuals need institutionalization. What
theydon’ trealizei sthatt herear ev iablealternat i
vest hatc an

Key Components of Systems Change - 16

substitute other forms of support for institutional care. If a substitute
support system were made available, people who now rely on
institutional models of care might instead choose an effective
community-based model of support. Only after this sort of analysis
do people question why institutional care should be given a
monopoly or preferential bias among the options for support.
asi
Institutional bi swel lknownt opeoplewhounder standt oday ’s
system, but it is clearly not well understood by many others.
Education can change this.
Such briefings can go a long way to demystify systems, claims, and
slogans that have heretofore been baffling or impenetrable. In the
process, these briefings also clear up misconceptions, offer people
a better sense of their options, and help people see where change
might be possible. Educational investments empower members of
the public to play a role in the personal and public affairs that shape
their lives.
To help people understand issues better and to apply critical
thinking to solutions --
 Plan and budget up front for the resources required for educational
activities.
 Survey stakeholders to find out what their misconceptions are.
 Develop and offer materials, briefings, trainings, forums, and other
activities that share detailed information about systems change issues.

Strategy #2: Create opportunities for values-based engagement and

training
Muchofwhatwecal l“change”i nvolvesshi ftsi nbeliefs,at ti
tudes,
and even deeper values –because these are usually very
significant in motivating people to take collective action. If these
value shifts are to occur, we must provide opportunities for people
to try out different perspectives and evaluate their relevance and
value.
Somet i
mest his“tr
yingout ”ofper spect i
vesandv aluescancome
about informally simply by creating the networking and dialogue
opportunities in which people can share and discuss such issues.
In a more formal context, forums and training sessions can have
considerable values content; these can be designed to sharpen
peopl e’
sappr eciat
ionofdi ff
er i
ngv aluesandt hec onsequencest hat
may flow from their adoption. For example, adoption of a value that
addresses safety by simply stipulating that safety of service
recipients is paramount could fail to allow for levels of informed
risk-taking on the part of service recipients. Training on the many

Key Components of Systems Change - 17

 aspects of risk management could have great value for
stakeholders as they establish a common value around safety and
risk.

Strategy #3: Expose people to excellence

Manypeopl ehav ecor rect
lynot edt hat“v i
sionbui l
ding”isakey
component of the change process. Such vision only takes hold in
people when they are exposed to examples that help them revise
their sense of what is both good and desirable. One way to achieve
this is by bringing stakeholders into contact with other people,
examples, and activities that exemplify excellence and help others
to expand their vision.
For example, the Alliance for Full Participation Conference
represents a single event to strengthen vision and to motivate
people to change. Another example is the annual Ellensburg
Conference in Washington State, which is an ongoing investment
that for well over a decade has exposed Washington residents and
others to national best practices in the field.3 In local instances,
such as the Model Communities initiative sponsored by the Real
Choice Systems Change project in New Hampshire, leaders have
created deliberate training events and conferences that are
intended both to inspire and build vision.
The essential steps in exposing people to excellence are the same,
although target groups will vary according to location and interests.
The steps are as follows:
 Identify promising examples of excellence (best practices and
evidence based practices).
 Create learning opportunities in which people are exposed to examples
of excellence to stimulate their thinking about how programs could be
improved.
 Reinforce vision building by exposing more and more groups to create
a cumulative impact.

D. Systems Changes Must Be Sustainable

Colloquium participants noted that not all Real Choice Systems Change projects
were initiated with a plan for sustainability, and to them that was a contradiction

3
For more information about these two projects, see the Alliance for Full Participation website at
http://www.allianceforfullparticipation.org/public and the Ellensburg Conference website at
http://www.communityinclusion.org.

Key Components of Systems Change - 18

in terms. If a state system or subsystem authentically changes, they reasoned,
the change should continue beyond the term of a federal grant.

1. Barriers to Sustainability
Colloquium participants agreed, however, that there are often
serious barriers to sustainability, including --
 lack of a clear vision about what should be sustained
 lack of adequate documentation that a service works effectively and
should be sustained
 lack of a way (including funding) to sustain the change

2. Strategies for Sustaining Systems Change

States that have instituted enduring systems changes seem to have
several things in common. Their strategies are described below.

Strategy #1: Allow leaders to work across conventional boundaries

The first ingredient in sustainability takes us back to the leadership
(at all levels) component earlier put forth as a key to systems
change itself. When diverse people who cross over multiple
boundar ies“ own”t hev i
sion,t heyi nv estti
me,ener gy ,andper sonal
passion that will carry the vision forward beyond the limits of a finite
grant. Of course, this requires a change in culture within the state
system that allows leaders to think and act outside the confines of
theirowni nst i
tut
ions.Oper atingi n“ silos”–such as single-project,
single-agency, or single-disability modes –can be a serious barrier
to systems change in general and the capacity to sustain that
change.

Strategy #2: Affirm, recognize, and celebrate valuable actions,

initiatives, and leadership
It can be a thankless and taxing exercise to labor alone and
unappreciated on changing systems and communities for the
better. Such work can be discouraging and even punishing, and
some people might easily give up on the exercise. Fortunately,
much of this burden can be lifted for people if you show respect,
appreciation and validation of their efforts. Such reinforcement can
help people stick to difficult tasks and find renewed resolve to
persevere. It is helpful when those concerned about change parcel
out some energies and time to pay homage to hardworking persons
and groups. Simply being thanked can go a long way to helping
people endure.

Key Components of Systems Change - 19

There are other reasons to give such trailblazers and committed
actors the recognition they deserve. Their work can be very
instructive for others who are similarly engaged because they have
accumulated insights and lessons that might be lost if they were not
identified as being important. Additionally, such recognition
validates the actions of others. Their role modeling represents more
than a singular investment: it contributes momentum to others
throughout the broader systems change movement.

Strategy #3: Use the media to build your profile and develop a
relationship with the public
In modern times, achieving any major shift in public perception
always involves a consistent, clear, and credible message put
forward through the media. More importantly, however, the
message must be relevant to the listener. The public does not yet
widely know, for example, that there can be options other than
nursing home care when a family member reaches a certain level
ofinfirmity.Thus ,peoplemaynotaskf orwhatt heydon’tknowi s
possible. A relationship built over time with the newspapers and
television and radio stations can reap huge rewards in raising the
consciousness of the public to the next level, giving immeasurable
support to an agency seeking passage of new laws or new funding.
We must invest in helping change groups shape, communicate,
and get out their message more successfully. We must not assume
that everyone is equally equipped in this regard or that the media
chosen and the content to be shared are going to be similar in
dif
ferentpl acesorsi t
uations.Thispr oc essof“ messagemaki ng”
may need to be repeated with considerable regularity so more
people can benefit from your assistance and support.

Strategy #4: Change regulations to provide a framework for future

action
Regulations provide an institutional bridge between past and future
leaders. New staff, consultants, and advisors gain immediate
exposure to what the requirements are under the current paradigm
of services. They in turn will continue to refine and change
regulations for the next generation of leaders. Sometimes, policy
makers change regulations to force issues that are stymied within a
state. Other times, the revisions in policy will be an outgrowth of
changes in processes and procedures that occur naturally over
time. It can, and often does, happen either way.

Key Components of Systems Change - 20

 Strategy #5: Collect data that will prove the effectiveness of system
changes
Change advocates need concrete evidence that new service
approaches enhance lives and are more cost-effective (or at least
cost-neutral). Without such data, it may be extremely difficult to
persuade legislatures and federal funding agencies to change laws
and policies or to better fund certain services. In order to collect the
right data, leaders must establish a data collection process at the
beginning of a project. One New England group that was awarded
a Nursing Facility Transition systems change grant so effectively
collected and reported information from moving people out of
nursing homes that they easily won funding from their state
legislature to continue the service beyond their grant period. If they
had not implemented an effectual data collection method early on,
they would have had inadequate proof with which to make a case.

Strategy #6: Find additional sources of funding for change projects

Finally, and clearly, there is the need for continued funding for
those services that prove to be effective and satisfactory for service
recipients. The previous five items build the foundation that makes
future funding much more possible. With these in place, the
systems change leader will be able to articulate the larger vision
and the workable outcomes from that vision to win needed
financing with a large base of support.

IV. Conclusion
This paper illustrates that potentially effective catalysts are available to people
trying to bring about needed changes in their community or state. These
catalysts can be very beneficial if used with discretion and wise application.
However, they are not a panacea. They do not guarantee success, but they
sometimes produce powerful results. We hope that the principles and examples
discussed in this paper will help systems change leaders across the country to
recognize some catalysts that might suit their particular change challenges.

Obviously there are more catalysts for change than those presented as examples
here. Our understanding of the key components of meaningful and sustainable
systems change continues to grow as we collectively gain experience through
the Real Choice Systems Change Grant initiatives. We expect this paper and
others in the series to facilitate further discussion and discovery among all
stakeholders who work to transform the social support systems serving people
with disabilities of all ages.

Key Components of Systems Change - 21

V. Reading List
This list, which is common to all three systems change papers produced by
ILRU, contains the two publications which were referenced in the second and
third papers, but primarily is offered as a reading list for those wishing to read
more about improving service systems to make them more responsive to people
with disabilities, the users of those systems. The list draws from many fields, not
just human services. Not all materials are still in print, but the reader should be
able to locate all these references in most large libraries.

Badcock, C.R., The Problem of Altruism, Basil Blackwell, 1986

Bella, Robert N., Madsen, Richard, Sullivan, William M., Swidler, Ann, Tipton,
Steven, M., The Good Society, Vintage, 1992

Bella, Robert N., Madsen, Richard, Sullivan, William M., Swidler, Ann, Tipton,
Steven, M., Habits of The Heart, University of California Press, 1985

Ciulla, Joanne B., (Editor), Ethics; The Heart of Leadership, Praeger, 1998

Colby, Anne, Damon, William, Some Do Care: Contemporary Lives of Moral

Commitment, The Free Press, 1992

Coles, Robert, The Call of Service: A Witness to Idealism, Houghton Mifflin, 1993

Collins, Pam, (editor), Relationships and Everyday Lives, CRU Publications,

Brisbane, Australia

Driedger, Diane, The Last Civil Rights Movement, Disabled Peoples

International,St
.Mar ti
n’sPr ess,1989

Easterbrook, Gregg, The Progress Paradox; How Life Gets Better While People
Feel Worse, Random House, 2004

Eddelman, Murray, The Symbolic Uses of Politics, University of Illinois Press,

1985

Fratangelo, Pat, Olney, Marjorie, Lehr, Sue, One Person at a Time, Training
Resource Network, Inc., 2001

Frieden, L., Richards, L., Cole, J., & Bailey, D., ILRU Source Book: A Technical
Assistance Manual on Independent Living. Houston, Texas: Independent Living
Research Utilization, 1979

Galper, Jeffry H., The Politics of Social Services, Prentice Hall International,
1975

Key Components of Systems Change - 22

Gilman, Sander l., Disease and Representation, Images of Illness from Madness
to AIDS, Cornell University Press, 1988

Gladwell, Malcolm, The Tipping Point; How Little Things Can Make a Big
Difference, Back Bay, 2002

Goffman, Erving, Relations in Public, Harper and Row, 1971

Goffman, Erving, Frame Analysis, Harper and Row, 1974

Gottschalk, Simon S., Communities and Alternatives; An Exploration of the Limits

of Planning, John Wiley And Sons, 1975

Gray, Barry, Jackson, Robin, (editors), Advocacy and Learning Disability, Jessica
Kingley Publishers, 2002

Hillman, James, Kinds of Power; A Guide to Its Intelligent Uses, Doubleday, 1995

Hoopes, James, False Prophets; The Gurus Who Created Modern Management
and Why Their Ideas Are Bad for Business, Perseus Books, 2003

Hoos, Ida R., Systems Analysis in Public Policy; A Critique, University of

California Press, 1972

Ignatieff, Michael, The Rights Revolution, House of Anansi Press Limited, 2000

Kallen, Evelyn, Label Me Human; Minority Rights for Stigmatized Canadians,

University of Toronto Press, 1989

Kendrick, M., Levels of Empowerment, Planet Advocacy, Issue Number 7, March

2004, pp 6-7

Klees, Janet, We Come Bearing Gifts, The Story of the Deohaeko Support
Network, Copywell, North York, Ontario

Kuhn, Thomas S., The Structure of Scientific Revolutions, 2nd Edition, 1970

Kouzes, James M., Posner, Barry Z., Credibility, Jossey Bass, 1993

Kouzes, James M., Posner, Barry Z., The Leadership Challenge, Third Edition,
Jossey Bass, 2002

Lasch, Christopher, The Revolt of the Elites and the Betrayal of Democracy,
W.W. Norton And Co., 1995

Leiss, William, The Limits To Satisfaction: An Essay on the Problems of Needs

and Commodities, University of Toronto Press, 1976

Loeb, Paul, R., Soul of a Citizen, St Martins Griffin, 1999

Key Components of Systems Change - 23

Loeb, Paul, R., The Impossible Will Take a Little While, Basic Books, 2004

Melnyk, George, The Search for Community; From Utopia to a Cooperative

Society, University of Toronto Press, 1985

Minow, Martha, Making All the Difference; Inclusion, Exclusion and American
Law, Cornell University Press, 1990

Morgan, Gareth, Images of Organization; The Executive Edition, Sage, 1998

Neugeboren, Jay, Transforming Madness; New Lives for People Living with
Mental Illness, William Morrow And Company, 1998

Oliner, Samuel P., Oliner, Pearl, M., The Altruistic Personality, The Free Press,
1988

Porta, Donatella Della, Diani, Mario, Social Movements; An Introduction,

Blackwell Publishers 1999

Palmer, John L., Smeeding, Timothy, Torrey, Barbara B., The Vulnerable, The
Urban Institute Press, 1988

Piven, Francis Fox, Cloward, Richard A., PoorPeopl

e’
sMovement
s;WhyThey
Succeed, How They Fail, Vintage Books, 1977

Putnam, Robert D., Bowling Alone, Simon and Schuster, 2000

Race, David, (editor), Leadership and Change in Human Services, Selected

Readings of Wolf Wolfensberger, Routledge, 2003

Reinders, Hans S., The Future of the Disabled in Liberal Society; An Ethical
Analysis, University of Notre Dame press, 2000

Resnick, Herman, Patti, Rino J., (Editors), Change from Within, Temple
University Press, 1980

Rost, Joseph C., Leadership for the Twenty-First Century, Praeger, 1993

Rosenberg, Charles E., TheCar

eofSt
ranger
s;TheRi
seofAmer
ica’
sHospi
tal
System, Basic Books, 1987

Saddhatissa, Hammalawa, Buddhist Ethics, Wisdom Publications, 1997

Sharpe, Virginia A., Faden, Alan I., Medical Harm; Historical, Conceptual and
Ethical Dimensions of Iatrogenic Illness, Cambridge University Press, 1998

Thrall, Bill, McNicoll, Bruce, McElrath, Ken, Blanchard, Ken, The Ascent of a
Leader; How Ordinary Relationships Develop Extraordinary Character and
Influence, Jossey Bass, 1999

Key Components of Systems Change - 24

Toch, Hans, The Social Psychology of Social Movements, Bobbs-Merrill, 1965

Tronto, Joan C., Moral Boundaries; A Political Argument for an Ethic of Care,
Routledge, 1993

Turnbull, H.R., Turnbull, Ann P., Parents Speak Out; Then and Now, second
edition, Charles E. Merrill Publishing, 1985

Volkan, Vamik D., The Need to Have Enemies and Allies, Jason Aronson Inc.,
1988

Wharf, Brian, Communities and Social Policy in Canada, Maclellan and Stewart,
1992

Wilson, James Q., The Moral Sense, The Free Press, 1993

Wolfe, Alan, Whose Keeper? Social Science and Moral Obligation, University Of
California Press, 1989

Wolfensberger, Wolf, The Principle of Normalization in Human Services, National

Institute on Mental Retardation, 1972

Wolfensberger, Wolf, and Glenn, L., Program Analysis of Service Systems: A

Method for the Quantitative Evaluation of Human Services, 2nd Edition, National
Institute on Mental Retardation, 1973

Wright, Chris, The Sufficient Community; Putting People First, Green Books,
Devon, 1997

Key Components of Systems Change - 25