Family Support Interventions For Families of Adults With Intellectual and Developmental Disabilities

C H A P T E R N I N E
Family Support Interventions

for Families of Adults with
Intellectual and
Developmental Disabilities
Tamar Heller and Abigail Schindler
Contents
1. Introduction 300
2. Impact of Having a Family Member with I/DD 301
3. Family Support Public Policies and Programs 311
3.1. Family support movement 311
3.2. Financial support 312
3.3. Impact of consumer direction on persons
with disabilities and families 313
3.4. Programs targeted to aging caregivers 316
3.5. Family support 360 317
4. Family Support Psychosocial Interventions 317
4.1. Future planning 318
4.2. Support groups 319
4.3. Support coordination and direct service program interventions
for older caregivers 321
4.4. Sibling support interventions 322
5. Conclusion 324
Acknowledgments 325
References 325
Abstract
Though families are considered the primary provider of support to people with
intellectual and developmental disabilities (I/DD), only a small amount of I/DD
funding in the United States goes toward offering assistance to these families.
In addition, formal interventions typically target families of children with I/DD,
which are no longer available when the individual enters adulthood. This
Department of Disability and Human Development, College of Applied Health Sciences, University of Illinois
at Chicago, Chicago, Illinois 60608-6904, USA
International Review of Research in Mental Retardation, Volume 37 # 2009 Elsevier Inc.

ISSN 0074-7750, DOI: 10.1016/S0074-7750(09)37009-3 All rights reserved.
299
300 Tamar Heller and Abigail Schindler
chapter reviews the literature on family support interventions for families caring
for adults with I/DD. It first examines the impact of lifelong caregiving and the
support needs of these families. It then draws attention to various interventions
currently available for these families, including systemic federal and state
family support public policies (such as cash subsidies, and consumer-directed
supports), as well as group level psychosocial interventions (such as support
groups, future planning interventions, and support coordination). The review
calls attention to the need for more intervention research that is methodologi-
cally sound and that addresses not only the perspective of parents but also that
of other family members (such as siblings) and the person with disabilities.
1. Introduction
Families are typically considered the primary provider of support to
people with intellectual and developmental disabilities (I/DD) (Fujiura,
1998; Fujiura & Braddock, 1992; Turnbull & Turnbull, 2000). In 2006,
approximately 60% of individuals with I/DD in the United States lived with
family caregivers, comprising an informal system of residential care that was
five times greater than the formal out-of-home residential care system
(Braddock, Hemp, & Rizzolo, 2008a). Studies have shown that most
individuals with disabilities prefer to remain at home, a preference family
members typically share ( Johnson, Kastner, & the Committee/Section on
Children with Disabilities, 2005). However, as people with I/DD age,
support from family members tends to decline as parents age and the need
for formal services increases (Bigby, 2003). Life expectancy for adults with
developmental disabilities has risen dramatically over the last 80 years.
Reports show that mean age at death now ranges from the late 50’s
(for those with more severe disabilities or Down syndrome) to 71 years for
adults with mild to moderate intellectual disabilities (Bittles, Petterson,
Sullivan, Hussain, Glasson, et al., 2002; Patja, Iivanainen, Vesala, Oksanen,
& Ruoppila, 2000). This compares with an average life expectancy of
15 years for males and 22 years for females with intellectual disabilities in
1931 (Carter & Jancar, 1983). In 2006, women aged 40–44 ended their
childbearing years with an average of 1.9 children, as compared to 3.6
children in the 1950s (Dye, 2008). This aging trend in combination with
the low rate of childbirth results in both an extended period of caregiving for
adults with I/DD and fewer family members from which to draw support.
In the United States, over 25% of family caregivers of individuals with
I/DD are over the age of 60 years and another 35% are ages 41–59 years
(Braddock et al., 2008a). With the large number of people on waiting lists
for residential services and with the current fiscal crisis preventing further
expansion of residential services, the number of adults with I/DD living at
Family Support Interventions for Families of Adults 301
home is likely to continue to increase. This increased demand for services

will directly impact the capacity of state service delivery systems, which
already are struggling to address the needs of 70,000 persons with I/DD
awaiting residential services (Prouty, Smith, & Lakin, 2006).
Whether or not individuals with I/DD live in the family home, their
family members often provide informal support including both social–
emotional and instrumental support that complements or even supplements
the formal supports available. These informal supports are invaluable to these
individuals, since they are related to higher morale, decreased loneliness and
worry, feelings of usefulness, lower mortality, better survival and recovery
rates from acute conditions, and reduced institutionalization (Hooyman,
1983; Mendes de Leon, Glass, Beckett, Seeman, Evans, et al., 1999;
Mendes de Leon, Gold, Glass, Kaplan, & George, 2001). The comprehensive
commitment, affective support, and individual oversight that informal social
supports provide cannot be truly replicated with formal social supports
(Bigby, 2000). Thompson (2004) found that 78% of adults with all types of
disabilities age 18 years and older in the United States who receive long-term
care at home get all their care exclusively from unpaid family and friends.
Despite this, only a fraction of the funding allotted for individuals with I/DD
in the United States goes toward offering assistance for those who provide this
essential informal support (Rizzolo, Hemp, Braddock, & Schindler, 2009).
This chapter reviews the literature on interventions to support families
caring for adults with I/DD. First, it examines the impact of lifelong
caregiving on families and support needs of families. Secondly, it focuses
on interventions aimed at different levels ranging from systemic federal and
state family support public policies (such as cash subsidies, consumer-
directed supports) to group level psychosocial interventions (such as support
groups, future planning interventions, support coordination) targeted to
specific subpopulations addressing various life transitions. The subpopula-
tions include aging parents, adult siblings, and the adults with I/DD them-
selves. Table 9.1 summarizes peer-reviewed empirically tested interventions
that primarily targeted families of adults with I/DD and includes the
methods and results.
2. Impact of Having a Family Member with I/DD

While most families adapt well to having a family member with I/DD,
the lifelong impact of providing care to a family member with I/DD
can affect the economic, health, and psychosocial well-being of family
members. The well-being of mothers was explored in two large popula-
tion-based samples, the Midlife Development in the United States
(MIDUS) and the Wisconsin Longitudinal Study. Findings indicated that
Table 9.1 Family support interventions for adults with intellectual and developmental disabilities
302
Authors Intervention Subjects Research design Measures Findings
Consumer direction
Caldwell Home-Based Support Nine intervention Qualitative Semistructured in- Benefits expressed by
(2007) Services Program families of adults exploration of home interviews families fit within
(HBSSP); self- with intellectual experiences of three central
directed; service and families themes: (1) family
facilitation; developmental participating in a financial benefits,
benefits up to three disabilities (I/DD) consumer- (2) benefits from
times social in a consumer- directed support respite and
security (SS) directed program program personal assistance
services, and
(3) prevention of
institutional
placements
Caldwell HBSSP; self-directed 209 intervention; Cross-sectional Surveys: (a) (1) Caregivers of
(2006) services; service þ 85 control comparison of household adults in the
facilitation; families of adults economic, health, income, (b) program reported:
amount of benefits with I/DD who and social functioning of (a) fewer out-of-
up to three applied for the outcomes people with pocket disability
times SS HBSSP; randomly between families I/DD, (c) out- expenses,
assigned by lottery of adults with of-pocket (b) greater access
I/DD in the disability to health care,
HBSSP and expenses, (d) (c) engagement in
families on employment, (e) more social
waiting list physical/mental activities, and
health, (f ) health- (d) greater leisure
care access, (g) satisfaction
social activities, (2) Lower-income
and (h) leisure families reported
satisfaction better mental
health and access
to health care than
controls
Caldwell HBSSP; self-directed 38 intervention; Longitudinal study of Surveys: (a) unmet (1) Over time,
and services; service þ 49 control impact of a service needs, (b) families in the
Heller facilitation; families (at Time 3) HBSSP at three service program
(2007) benefits up to three of adults with points over a 9- satisfaction, experienced
times SS I/DD who applied year period: Time (c) community (a) decreased
for the HBSSP; 1 (1991), Time participation, and unmet service
randomly assigned 2 (1995), and (d) caregiving needs, (b) higher
by lottery Time 3 (2000). burden service
Cross-sectional satisfaction,
comparison of increased
groups at Time 3 community
participation of
individuals with
disabilities, and (c)
decreased
caregiver burden
(2) At Time 3,
families in the
program had
fewer unmet
needs and higher
service satisfaction
than did families
on the waiting list
Caldwell HBSSP; self-directed 97 families who had Cross-sectional Surveys: (1) More control by
and services; service applied to the survey of families (a) caregiving families of their
Heller facilitation; HBSSP and who using paid respite burden, respite/personal
(2003) received paid or personal satisfaction, and assistance services
303
(continued)
Table 9.1 (continued)
304
benefits up to three respite or personal assistance services, self-efficacy, was associated

times SS assistance services measured impact (b) service with (a) increased
of (1) level of satisfaction, service
control of services (c) community satisfaction,
and (2) hiring involvement, (b) increased
relatives versus maladaptive community
others to provide behavior, and involvement of
services health status of individuals with
adult with I/DD, I/DD, and (c)
(d) maternal increased
employment, (e) employment of
staff turnover, (f ) mothers
control of respite/ (2) Hiring relatives to
PA services, and provide services
(g) unmet service was associated
needs with the increased
community
involvement of
individuals with
I/DD
Heller and HBSSP; self-directed 301 families; þ 835 Impact of HBSSP on Placement data: (a) at Individuals with
Caldwell services; service controls who out-of-home home with family, I/DD enrolled in
(2005) facilitation; applied for the placement over an (b) out of home in HBSSP were less
benefits up to three HBSSP; randomly 8-year period any type of likely than
times SS assigned by a using placement residential setting, controls to move
lottery date provided by and (c) into an out-of-
the state institutional home placement,
Department of placement particularly to an
Human Services institution
Heller, HBSSP; self-directed 78 intervention; Impact of HBSSP on Survey: (a) family (1) Participants had
Miller, services; service þ 146 controls family caregivers Support Index, (b) fewer unmet
and facilitation; who applied for and adults with service needs and used
Hsieh benefits up to three the HBSSP; I/DD used satisfaction, (c) more services than
(1999) times SS randomly assigned surveys þ phone caregiving controls
by a lottery interviews: (a) self-efficacy, (d) (2) Participant
pretest, posttest caregiver burden, caregivers were
design compared (e) out-of-home more satisfied
participants’ placement plans, with the services
outcomes over 4 (f ) community their relative
years and (b) integration, (g) received,
posttest design monthly wage, experienced
compared groups and (h) phone greater self-
at Time 2 interviews efficacy, and were
less likely to desire
an out-of-home
placement than
the control group
(3) Participants with
I/DD
experienced
increases in
community
integration and
monthly wage
Future planning
Botsford Workshop sessions 13 intervention; Pre- and posttest Pre- and posttest (1) Increase in
and Rule for mothers þ 14 control group comparison telephone knowledge and
(2004) mothers of adults interviews: (a) awareness of
with I/DD; age-related resources for
applicants to changes; (b) planning
305
(continued)
306
support group function, health, (2) Stronger sense of

matched on age and behaviors of confidence and
and marital status adult offspring; competence in the
and (c) knowledge future plan
of resources, (3) Advance in their
awareness of own future
planning planning process
resources, and
identification of
service needs
Heller and 1-day legal and 29 intervention; Pre- and 1-year Pretest and 1-year (1) Increased family
Caldwell financial training þ 19 control follow-up posttest follow-up surveys completion of a
(2006) for both groups, families of adults with intervention of caregivers: (a) letter of intent
5, 2-h peer coled with I/DD; and control future planning (2) Increased action-
monthly sessions program groups activities; (b) taking on
for intervention applicants caregiving residential
families and adult randomly assigned burden, planning
with I/DD using by lottery satisfaction, self- (3) Increased action-
‘‘The future is efficacy; (c) taking on the
now’’ curriculum discussion with development of a
individuals with special needs trust
I/DD; (d) choice- (4) Decreased
making of caregiving burden
individuals with (5) Increased daily
I/DD; and (e) choice-making of
barriers to future individuals with
planning I/DD
Support coordination
Bigby et al. Two programs 44 parent caregivers Postintervention Interviews: (a) (1) 59% of families
(2002) ‘‘options for older over age 50 years process-outcome clients, (b) service reported that they
families,’’ Case (44-file audit; evaluation; coordinators, (c) were better able to
management 20-interviews quantitative and case managers, make plans and
Discretionary randomly qualitative data and (d) key DHS decisions about
funds for older selected) in two personnel the future,
caregivers on sites including the
immediate needs process of
and future separation and
planning; targeted letting go
caregivers and 10 educational File audits (2) 48% of families
adult with I/DD; session attendees reported that their
proactive (randomly trust or access to
intervention and selected from 99 formal services
crisis prevention; for phone survey) increased
support workers; 2 case managers Phone survey: (a) (3) 66% of people
community clients and (b) with ID had
education service providers increased access to
out-of-home day
and recreational
activities
4 key DHS Focus groups:
personnel agencies
Bigby and Compared a specialist 64 older family Two group process- Interviews and file (1) Few significant
Ozanne programs for older caregivers (age outcome audits differences exist
(2005) caregivers to over 55 years) in comparisons between the two
mainstream case coordination evaluating the types of programs
disability case programs (44 in programs; (2) The older
coordination specialist and 20 in qualitative and caregiver
programs mainstream quantitative data programs
program) for provided
parents of adults community
with I/DD education
307
(continued)
308
functions which
the mainstream
programs did not
(3) Case managers in
the specialist
programs were
more likely to
organize/facilitate
activity outside
the home
Support groups
Mengel Needs assessment of 33 family members Postintervention Questionnaires: (a) (1) Participants
et al. parents of adults from 24 families evaluation of family found the group as
(1996) with I/DD and/or from a intervention characteristics and a whole helpful
mental illness used community (b) informal
to design 5, 2-h agency resource needs
weekly support Feedback from (2) Participants
and educational group members reflected that the
meetings group gave them
new perspectives
(3) Many found that
caregiving parents
of children with
I/DD and mental
illness had more in
common than
they originally
thought
Smith et al. Focus group 30 parents of adults Process-outcome Survey questionnaire (1) Parents found
(1996) determined the with I/DD (17 evaluation with most helpful:
intervention lived with their quantitative and (a) information
psychoeducational child, 13 had qualitative data about future
support group that children who planning, (b)
met for six sessions lived elsewhere) developing
for 1.5 h. Didactic awareness of
presentation and formal services,
parent discussion (c) hearing the
concerns of other
parents, and
(d) sense of
camaraderie
(2) Parents found less
helpful:
(a) preparing them
to cope with
age-related
changes and
(b) enabling them
to call on support
network for
assistance
Only those interventions formally evaluated and reported in journals with outcome measures were included.
309
while mothers show increased negative affect after receiving their child’s
diagnosis of I/DD, over time families adapt well to having a child with
I/DD. Still, mothers are likely to experience fewer visits with friends and
an economic impact reflected in lower maternal rates of employment,
lower family savings, and greater family-related work role strain (Ha,
Hong, Seltzer, & Greenberg, 2008; Seltzer, Greenberg, Floyd, Pettee, &
Hong, 2001).
The research on health effects of caregiving for adults with I/DD is
mixed. While some studies have shown little impact on their health (Chen,
Ryan-Henry, Heller, & Chen, 2001; Seltzer et al., 2001), several recent
studies have noted higher rates of certain health conditions and poorer
access to health care for subgroups of mothers (Caldwell, 2008; Magana &
Smith, 2006, 2008). Data from the National Health Interview Survey
showed higher rates of depressive symptoms, heart problems, and arthritis
in Latina mothers who were caregivers of adults with I/DD versus other
Latina mothers in the same age group (Magana & Smith, 2006, 2008). The
mothers caring for an adult with I/DD were also less likely to see a general
practitioner, see or afford a mental health professional, or afford prescription
medicines. Similar findings existed for Black American mothers caring for
adults with I/DD, as these mothers were more likely than other Black
American mothers to have arthritis and diabetes and also reported more
difficulty in affording medication and mental health professionals.
In a study of mothers coresiding with their adult child with I/DD who
had applied for a consumer-directed program, no differences existed in
physical health between these mothers and the general population of
mothers (Caldwell, 2008). However, the mental health of midlife caregivers
(45–54 years of age) and older caregivers (older than 65 years) was worse
than national norms. Caldwell (2005) notes that this may be associated with
two key periods: transitions to adulthood of individuals with disabilities and
transitions when aging caregivers are no longer able to provide care.
However, one alternative explanation is that the mothers who applied for
the program had worse mental health than mothers who did not apply
for the program.
A range of contextual factors influence the health and well-being of
families of adults with I/DD, including child characteristics, socioeconomic
status, minority cultural context, and extent of social support networks
(Greenberg, Seltzer, Krauss, & Kim, 1997; Heller, Hsieh, & Rowitz,
2000; Hong, Seltzer, & Krauss, 2001; Magana, Seltzer, & Krauss, 2004;
Orsmond, Seltzer, Greenberg, & Krauss, 2006; Orsmond, Seltzer, Krauss, &
Hong, 2003). Greater unmet needs for services have contributed to poorer
mental health (Caldwell, 2008), caregiving burden (Heller & Factor, 1993),
and to desire for an out-of-home placement (Heller & Factor, 1993).
Caldwell (2008) found that poorer access to health care was associated
with poorer mental and physical health among mothers caring for an adult
with I/DD. Unmet needs for services and out-of-pocket disability-related

expenses appeared to pose difficulties for working age caregivers in afford-
ing the financial costs of health care for themselves. Key service needs
reported by families include respite services; case coordination; transporta-
tion; recreation services; and information regarding housing, financial plans,
and guardianship (Heller & Factor, 1993; Heller, Miller, & Factor, 1999;
Pruchno & McMullen, 2004).
Despite these findings, many families affirmatively choose to have their
adult son or daughter live at home into adulthood (Seltzer, Larson, Makuch,
& Krauss, 2000). Additionally, many families also report positive benefits
of having a family member with I/DD living with them, including receiv-
ing companionship and help with household chores (Heller, Miller, &
Factor, 1997).
3. Family Support Public Policies and Programs

3.1. Family support movement
The family support movement emerged in the 1970s, emphasizing the
provision of information, emotional support, and instrumental support to
families in order to build on existing strengths (Dunlap, 2000; Kagan, 1996;
Zigler & Black, 1989). This movement reflects a theoretical shift from
providing treatment for individuals with some perceived deficiency to
empowering an entire family within their own social context as a form of
prevention (Kagan, 1996). The term family support is conceptually ambigu-
ous due to the wide range of programs which employ this terminology
(Dunst & Trivette, 1994). However, a review of family support literature
revealed that the guiding principles for family support can be organized into
approximately six categories: (1) enhancing a sense of community, (2) mobi-
lizing resources and supports, (3) sharing responsibility and collaboration,
(4) protecting family integrity, (5) strengthening family functioning, and (6)
adopting proactive program practices (Dunst, 1995).
Family supports for families of adults and children with I/DD are
services provided with the purpose of enabling the individual to continue
living at home. Specific supports may include financial support, respite
services, home health care, family education and training, family
counseling, support groups, and flexible financial assistance (Freedman &
Boyer, 2000). In the United States, only a small amount of spending on
I/DD services is typically directed toward individuals living in the family
home. In 2006, family support spending accounted for only 5% of total
I/DD spending (Rizzolo et al., 2009). Many of these programs primarily
focus on families of children versus adults with disabilities (Freedman &
Boyer, 2000).
3.2. Financial support

Families of children with I/DD, work fewer hours, quit working, have
more severe financial problems, and are less likely to take a job than families
of other children with disabilities and families of nondisabled children
(Anderson, Larson, Lakin, & Kwak, 2002; Parish, Seltzer, Greenberg, &
Floyd, 2004). Out-of-pocket costs for the care of an adult with I/DD can be
substantial (Caldwell, 2006; Fujiura, Roccoforte, & Braddock, 1994).
Hence, support for families of an adult with a disability often comes in the
form of financial assistance including cash subsidies, vouchers, reimburse-
ment, or direct payments to providers (Turnbull, Stowe, Agosta, Turnbull,
Schrandt, et al., 2007). Two types of financial support are essential compo-
nents of the family support system in the United States: cash subsidies and
the Medicaid Home and Community-Based Support Waiver. Cash sub-
sidies are direct payments to families which give them increased control
over services and supports most suitable for their particular family member.
Nationally, 24 states offer cash subsidies or vouchers to families and 18 states
have Supported Living waivers. Forty eight states and DC provide state or
Medicaid-funded supported living or personal assistance services (PAS) for
people with I/DD living in their own or family home (Braddock et al.,
2008a). Community-based services from Medicaid include the Home and
Community-Based Support (HCBS) Waiver, PAS, and case management.
The Medicaid Home and Community-Based Services Waiver (HCBS),
enacted in 1981 (Pub. L. 97-35), permits states to waive certain Medicaid
requirements in order to receive federal Medicaid cost share for ‘‘noninsti-
tutional’’ services (Lakin, Prouty, Alba, & Scott, 2008). The first year this
program was enacted, only two states provided the waiver as an option, but
it has since expanded to become the principal funding source for services
that support individuals living in the family home (Lakin et al., 2008;
Rizzolo, Hemp, & Braddock, 2006). In 2006, the HCBS Waiver financed
70% of all family support services in the United States, with over 45% of
recipients of the waiver living with family members (Braddock, Hemp, &
Rizzolo, 2008b; Lakin, Prouty, & Coucouvanis, 2007).
HCBS Waiver services vary by state, and may include individualized
funding for case management, homemaker assistance, home health aides,
personal care, residential and day habilitation, transportation, supported
employment, home modification, respite care, and therapies (Rizzolo
et al., 2009). Use of this waiver has played a significant role in financing
the supports necessary for community living as an alternative to institution-
alization (Lakin et al., 2008). They have provided more options for families
who would like to keep their adult with I/DD in the family home.
In fact, 21 states have restructured their HCBS waivers into distinct
‘‘supports’’ and ‘‘comprehensive’’ programs. While ‘‘comprehensive’’ pro-
grams allow for 24-h community residential care for individuals with I/DD,
‘‘supports’’ waivers are geared toward preventing out-of-home placement.

These waivers operate at around 20–50% of the cost of a comprehensive
waiver and encourage families to act as nontraditional providers of care.
Seven of these programs target adults with I/DD, 11 target both children
and adults with I/DD, and just three target only children (Smith, Fortune,
& Agosta, 2006).
Over the past decade many of these programs both in the United States
and internationally are based on consumer-directed models, in which
persons with disabilities and their families define, choose and direct their
own supports (Lundsgaard, 2005; Tilly, Wiener, & Cuellar, 2000; Tritz,
2005). Recent developments, such the Robert Wood Johnson Cash and
Counseling demonstration projects (Phillips et al., 2003) and the Indepen-
dence Plus initiative (Crowley, 2003), have catalyzed the development of
new consumer-directed programs across disability and age groups. For
people with physical disabilities, consumer direction in PAS has existed
for over 30 years. Consumer direction for the elderly and persons with
I/DD, however, is a more recent development.
3.3. Impact of consumer direction on persons

with disabilities and families
Research has shown a positive association between perception of control
and health and disability among elders (Hofland, 1988; Rodin, 1986) and
those with I/DD (Neely-Barnes, Marcenko, & Weber, 2008). The shift
from social benevolence to individual capabilities and autonomy, and
human rights (Powers, Sowers, & Singer, 2006) has resulted in less focus
on health and safety and more on independence and individual control of
supports. This change is more subtle for people with I/DD, who are often
perceived as passive recipients of help and in need of protection from abuse.
However, their access to person-directed approaches is increasing, includ-
ing use of delegated decision making in which family members provide
supported decision making.
Studies comparing consumer-directed and agency-directed services
found consumer-directed services resulted in greater service satisfaction
and fewer unmet service needs among individuals with physical disabilities
(Beatty, Richmond, Tepper, & DeJong, 1998; Benjamin, Franke, Matthias, &
Park, 1999; Benjamin & Matthias, 2001; Benjamin, Matthias, & Franke,
2000; Doty, Kasper, & Litvak, 1996); and no significant differences in health
status or safety (Beatty et al., 1998; Foster, Brown, Phillips, Schore, & Carlson,
2003). However, some have reported psychological benefits concerning
feelings of empowerment (Beatty et al., 1998) and perceived quality of life of
individuals with disabilities (Foster et al., 2003). However, relatively few
empirical studies have examined consumer-directed supports for adults with
I/DD; instead, studies have focused on consumer-directed supports for

individuals with physical disabilities.
The research on consumer-directed supports for people with I/DD has
primarily focused on the impact of support on families, though a few studies
also included the impact on individuals with I/DD. Since the majority of
persons with I/DD live with family members, in practice, consumer direc-
tion is often linked with supporting families (Simon-Rusinowitz, Mahoney,
Loughlin, & Sadler, 2005). Some programs have specifically targeted
families, such as the existing cash subsidy family support programs within
the developmental disabilities system (Braddock et al., 2008b) and many
family support programs within the aging service systems (Feinburg &
Newman, 2005).
Among families of persons with I/DD, outcomes of consumer-directed
programs have included studies of cash subsidies for families of children with
I/DD in Michigan and Minnesota (Herman, 1991, 1994; Meyers &
Marcenko, 1989; Zimmerman, 1984) and studies of the Illinois Home-
Based Support Services Program (HBSSP), an HCBS Waiver program,
which offers funding of up to three times Social Security Income (currently
$1274). This program allows adults with I/DD and/or their families to direct
their supports with the aid of support brokers and fiscal intermediaries that
reimburse personal assistants (PAs). It also allows the individuals to hire family
members, excluding spouses. Families in the Michigan cash subsidy program
for families of children experienced decreased family stress and increased
ability to meet their relative’s needs (Herman, 1991, 1994; Meyers &
Marcenko, 1989). Minnesota’s cash subsidy program for families of children
with I/DD showed similar results, with parents reporting improved caregiving
conditions as a result of direct cash subsidies (Zimmerman, 1984).
The series of studies of the Illinois HBSSP included longitudinal data
over a 9-year period (1991–2000) on families receiving the consumer-
directed program and those on the waiting list. During this period, the
program used a lottery to draw eligible participants from the applicant pool,
enabling a random design. Using data provided from the Illinois Depart-
ment of Human Services, findings indicated decreased out-of-home place-
ment, particularly institutional placements over a period of 8 years among
1136 families (Heller & Caldwell, 2005). In a longitudinal study of the
program’s first 4 years including 224 subjects, participants had fewer unmet
needs and used more services than the waiting list applicants. Participant
caregivers also were more satisfied with the services their relative received,
experienced greater self-efficacy, and were less likely to desire an out-
of-home placement than the control group. Participants with I/DD
experienced increases in community integration and monthly wages. In a
further follow-up over a 9-year period of 38 HBSSP participants, Caldwell
and Heller (2007) found that over time, families in the program experienced
decreased unmet service needs, higher service satisfaction, decreased
caregiver burden, and increased community participation of individuals

with disabilities. Families in the program had fewer unmet needs and higher
service satisfaction than did families on the waiting list. In a cross-sectional
analyses comparing the economic, health, and social impacts of the HBSSP
program on 209 randomly selected families in the program with 85 families
on the waiting list for the program, program participants reported fewer
out-of-pocket disability expenses, greater access to health care, engagement
in more social activities, and greater leisure satisfaction. There also appeared
to be greater impacts on lower-income families; these caregivers reported
better mental health and access to health care than did similar caregivers on
the waiting list. Experiences of families with relatives with I/DD participat-
ing in a consumer-directed support program were also explored qualita-
tively. Financial benefits, benefits from respite and personal assistance
services, and prevention of undesirable institutional placements were
major themes that emerged and triangulated with the quantitative research
(Caldwell, 2008).
In the United Kingdom, an evaluation of the way in which families of
persons with various disabilities use the direct payment program, which
allows families of various disabilities to receive a direct cash payment instead
of using community services, revealed that most families used this money to
help pay for personal assistant services and related expenses (Stainton, 2002).
Interviews with participants in this program were overwhelmingly positive.
Participants felt that the direct payments gave them increased choice and
empowerment, increased flexibility in scheduling services, a greater sense of
trust for personal assistant workers (since they were able to choose and train
them themselves), and feelings of confidence and optimism (Stainton &
Boyce, 2004). Family members felt that the direct payments relieved their
anxiety about going out or working because they were more confident in
the care their family member was receiving using the direct payments.
Flexibility in hiring, including the ability to hire family and friends, is a key
determinant of interest in consumer direction (Mahoney, Desmond, Simon-
Rusinowitz, Loughlin, & Squillace, 2002; Simon-Rusinowitz, Mahoney, &
Benjamin, 2001; Simon-Rusinowitz, Mahoney, Desmond, Shoop, Squillace,
et al., 1997). Among 139 programs in the United States surveyed, 80%
allowed hiring family (Doty & Flanagan, 2002). At least half of all paid
employees in consumer-directed programs in California, Florida, New Jersey,
and Arkansas are family members (Stainton & Boyce, 2004). When consu-
mers are able to hire their own PAs, they often hire those they already know,
including friends and family members. Hence, PAs are more likely to give
emotional as well as physical support, leading to higher life satisfaction
(Stainton & Boyce, 2004). In the California program for people with various
disabilities, consumers who hired families and friends experienced more
satisfaction and stability with their personal assistants and less abuse than did
the consumers who hired strangers (Matthias & Benjamin, 2008).
Among families of people with I/DD in the Illinois consumer-directed

support program, those participants who hired families and friends had
significantly higher leisure satisfaction than families who used agency direct
support workers (Caldwell & Heller, 2003). Hiring friends and relatives to
provide services was also associated with increased community involvement
of individuals with I/DD (Caldwell & Heller, 2003). For adults with I/DD,
hiring of parents could result in less self-determination since they may desire
more independence from parents in adulthood. Additional research is
needed to address the influence of hiring parents, other family members,
and friends on the outcomes of consumer-directed support. Also, none of
the research has included the perspectives of people with I/DD, which are
critical to understanding the impact of consumer direction on their lives.
3.4. Programs targeted to aging caregivers

For some family members of adults with I/DD, care has primarily been
considered a family responsibility, and they remain out-of-touch with
formal disability services (Knox & Bigby, 2007). While the use of formal
disability services predicts lower caregiving time demands and lower per-
ceived burden of parents, families of adults with disabilities are less likely to
use these services than families of children (Haveman, Van Berkum,
Reijnders, & Heller, 1997; Hayden & Heller, 1997; Smith, 2007). This
may be because community services were not as readily available during the
earlier years of some older families. These parents would have had very
different experiences with the service system, with fewer services being
available and the expectations for services likely to be lower (Haveman
et al., 1997). Older family caregivers are often reluctant to ask for assistance
due to a history of mistrusting services, previous bad experiences or rejec-
tion of services, and fear that their family member will be ‘‘taken away’’
(Walker & Walker, 1998). Several programs have been designed as outreach
to this population of family caregivers.
In the United States, the 1973 amendments to the Older Americans Act
required the establishment of Area Agencies on Aging (AAA) in each state.
AAAs are funded through a combination of federal funds through the Older
Americans Act, state funds, and private grants. These organizations are
responsible for coordinating and providing a wide range of services and
support to older Americans. Its family support program, The National
Family Caregiver Support Program (NFCSP), enacted under Title III-E
of the Older Americans Act Amendments of 2000 and in its reauthorization
in 2005, has funded states to serve caregivers of individuals age 60 years and
older and grandparent caregivers of minor children. Language was included
in the 2005 reauthorization that was intended to expand coverage to older
caregivers of family members of any age with I/DD, but the language still
remains unclear about the applicability to caregivers of adults with I/DD.
Supports for older caregivers may include information on future planning,

referrals to agencies for respite care and community services, mailing lists,
home modifications, and financial assistance ( Janicki et al., 1996/2003).
Another program that bridges the aging and disability service systems is the
Aging and Disabilities Resource Center (ADRCs) programs jointly devel-
oped in 2003 by the Administration on Aging (AoA) and the Centers for
Medicare and Medicaid (CMS). These centers are designed as coordinated,
‘‘one-stop’’ informational centers. As of 2006, at least 14 of the 43 centers
targeted families and individuals with I/DD. Little research exists on the
impact of these programs on adults with I/DD or on their families.
3.5. Family support 360

The family support 360 (FS 360) initiative, sponsored by the U.S. Depart-
ment of Health and Human Services’ Administration on Developmental
Disabilities (ADD), focus on the needs of families of both children and
adults with I/DD. ADD is presently providing 21 ‘‘implementation’’ grants
along with 9 ‘‘planning’’ grants. The implementation grants are awarded to
organizations that serve as ‘‘one-stop centers’’ for families of individuals
with I/DD. These centers work directly with targeted families to assist them
in locating and navigating public human service agencies, as well as to
connect them with private community organizations. Centers may assist
families with a wide range of needs, including accessing health care, child-
care, early intervention, education, employment, marriage education, trans-
portation, housing, respite care, and assistance in maintaining parental rights
(Administration on Developmental Disabilities, 2005). Many of these cen-
ters address underserved families, such as those from minority backgrounds,
those living in poverty, and military families. Most of the grants serve
families of children and youth, though a few cover all ages. Little research
is available on the impact of these programs on families of adults with I/DD.
4. Family Support Psychosocial Interventions

Beyond federal and state public programs, interventions for families of
adults with I/DD include education and training, counseling, and support
groups. These interventions may be targeted at specific groups like aging
family caregivers or adult siblings of individuals with I/DD. The following
section explores interventions targeting family members of adults with
I/DD, including future planning, support groups, and support coordination
and direct services.
4.1. Future planning

A primary concern for aging family caregivers is the future safety and
security of their relative with I/DD after their death. More than half of
these families neglect to make concrete future plans (Freedman, Krauss, &
Seltzer, 1997; Heller & Factor, 1994), which should include legal and
financial planning, guardianship, and future living arrangements. Without
adequate plans and supports in place, individuals with I/DD may be given
emergency placements in inappropriate settings, and inadequate financial
and legal safeguards when primary caregivers can no longer provide care.
Future planning initiatives target this need by helping aging families and
adults with I/DD plan for the future to assure quality care and avoid crises
for their relative after their death.
A number of future planning projects targeted families of adults with
I/DD. These include the Family Futures Planning Project (Susa & Clark,
1996), the Planned Lifetime Advocacy Network (PLAN) (Etmanski, 1997),
the Family-to-Family project (Griffiths, 1997), the Psychoeducational
Group Intervention for Aging Parents (Botsford & Rule, 2004) and the
Rehabilitation Research and Training Center (RRTC) and Aging with
Developmental Disabilities Family Future Planning Project (Heller &
Caldwell, 2006).
The Family Futures Planning Project (Susa & Clark, 1996) out of Rhode
Island was a 10-session program for older family caregivers. Families were
given information on future planning and a facilitator assisted families with
developing a plan and building a support network. The 18 participating
families were able to make change and progress in the process of future
planning.
In British Columbia, PLAN (Etmanski, 1997) is a nonprofit organization
devoted to helping families of individuals with I/DD in future planning and
in caring for their relative with a disability. Their six-step guide for devel-
oping a future plan includes clarifying your vision, building relationships,
controlling the home environment, preparing for decision making, devel-
oping your will and estate plan, and securing your plan. This intervention
combines workshops, technical assistance, and interaction with mentor
families and paid facilitators to develop future plans. In addition to in-person
workshops, PLAN has introduced online and telelearning workshops on
registered disability savings plans, and wills, trusts, and estates. Using these
mediums, parents are able to get critical information their own homes
(Planned Lifetime Advocacy Network, 2008).
The Family-to-Family project in Massachusetts (Griffiths, 1997)
involved the development of eight family-to-family centers across the
state. Each center varied in the supports they provided as part of this
intervention. Presentations, resource manuals, and parent support groups
were developed and enacted regarding future planning issues. These issues
included special needs trusts and wills, funding sources, housing options,
home ownership, consumer-controlled housing, circles of support, and
self-advocacy.
The Psychoeducational Group Intervention for Aging Parents (Botsford
& Rule, 2004) was a professionally led psychoeducational group interven-
tion for older parents caring for an adult with I/DD at home. The inter-
vention provided caregivers the opportunity to express concerns about the
future for their offspring. Three sessions were devoted exclusively to parents
expressing concerns and interacting, while the remaining three sessions
included speakers on legal, financial, and other future planning issues.
The effectiveness of the intervention was assessed using a randomized
experimental design with a fairly small sample (N ¼ 27, of which 13 received
the intervention). Two weeks after the training, parents participating in the
program showed increases in knowledge and awareness of resources for
planning, a stronger sense of confidence and competence in their ability to
make future plans, and progress in making residential and legal plans for their
family member with I/DD.
In a study that included a longer-term longitudinal randomized design
with a larger sample, the Rehabilitation Research and Training Center on
Aging with Developmental Disabilities Family Future Planning Project,
examined the impact of its ‘‘Future is Now’’ curriculum. The curriculum
involves training of both family members and the person with I/DD. It is
based on a person-centered planning approach and a peer support model
which includes adults with I/DD and families as coleaders in the training.
The intervention studied consisted of a legal/financial training session
followed by five additional small-group workshops. Pretest and 1-year
follow-up surveys to 49 families (29 in the intervention and 19 control)
indicated that the intervention families were more likely to complete letters
of intent, take actions on residential planning, and develop special needs
trusts (Heller & Caldwell, 2006). In addition to these concrete future plans,
the intervention also led to decreased caregiving burden and increased
opportunities for daily choice-making of individuals with I/DD. The
major limitation noted was that families did not involve siblings of the
adults with I/DD in the planning process. Also, there were no data reported
on the perspectives of the adults with I/DD.
4.2. Support groups

Parent or professionally led support groups are common for parents of
children with I/DD. Studies have found that parents in these support groups
are highly satisfied with the sense of agency and belonging the groups provide
(Solomon, Pistrang, & Barker, 2001). Participants have reported improved
parenting skills, a reduced sense of isolation, and a stronger sense of emotional
support (Kerr & McIntosh, 2000; Law, King, Stewart, & King, 2001).
With the exception of a few studies on support groups for aging caregivers
(Mengel, Marcus, & Dunkle, 1996; Smith, Majeski, & McClenny, 1996),
little data are available on support groups for parents of adults with I/DD.
One study revealed that parents of adults with mental illness were more likely
to participate in support groups than were parents of adults with I/DD
(Greenberg et al., 1997). The authors hypothesized that this may be because
mothers of adults with I/DD are more likely to have more extensive social
supports already through family and friends than do parents of adults with
mental illness.
The parents of adult children with developmental disabilities (PACDD)
group, part of the parents helping parents (PHP) network is designed to
support parents and adult siblings of people with I/DD. This group holds
monthly seminars on topics such as in-home support services, challenging
behaviors, and social security. In addition to these more formal seminars, the
group meets for potluck dinners every few months. These informal times
offer a chance for parents to fellowship and create a network of support
(Parents Helping Parents, 2008).
Many parent support groups employ an online format, utilizing message
boards and listservs to help parents make connections with others in similar
situations. Many of these support groups are disability-specific, and connect
parents of children with I/DD, Down syndrome, Autism, and a variety of
other disorders. Very few of the in-person or online support groups have
been evaluated for their impact on participants.
Two studies examining support groups for aging caregivers of adults
with I/DD provide some limited data that show promise, but do not
include much empirical data (Mengel et al., 1996; Smith et al., 1996).
Smith et al. (1996) describe a psychoeducational support group program
attended by 30 aging parents of adult offspring with I/DD established with
assistance from a focus group of practitioners and parents. The six sessions,
which were led by professionals, aimed to provide information on future
planning and to help families cope with their caregiving demands. Partici-
pants appraised the sessions very positively and were most satisfied with the
opportunities provided them for networking and sharing experiences with
other families. Parents who coresided with the adult with I/DD were more
interested in information on future planning; whereas parents whose adult
child lived out of the family home were most interested in information on
quality of residential care.
Mengel et al. (1996) evaluated a support and education group targeting
33 aging caregivers of individuals with I/DD and mental illness. The group
was held in a senior service center, so the population targeted did not
necessarily reflect those families that are connected to the disability services
network. The group held three meetings that provided educational support
from experts in permanency planning, residential options, and community
services. The majority of parents attending the group had a son or daughter
with I/DD, with only about a quarter of offspring having mental illness, and
one having a traumatic brain injury. The remaining two meetings were
designed for parents to get acquainted with one another and offer emotional
support. While no formal measures were used to assess the efficacy of this
group, anecdotal reports indicate that this support group contributed to
shared coping strategies between parents, dispelled myths about mental
illness and I/DD, and provided insight and self-understanding for group
members. An indication that the group may have been successful in meeting
needs of families was that 15 members of the support group continued to
meet once a month after the first five sessions held at the senior center.
While psychoeducational support groups for aging caregivers hold promise
as effective means of helping aging caregivers acquire information and
network with other families, the empirical research to date is very scant
regarding their outcomes.
4.3. Support coordination and direct service program

interventions for older caregivers
Several projects in the United Kingdom and Australia provide models for
support coordination and direct family support services for aging caregivers
of adults with I/DD (Bigby, Ozanne, & Gordon, 2002; Carers FIRST,
2008; Sharing Caring Project, 2008). The Sharing Caring Project (SCP) in
the United Kingdom is an organization that supports family caregivers over
55 years of age. It has produced information packets for caregivers, ‘‘life-
books’’ for people with I/DD, and partnered with the Sheffield National
Health Service (NHS) Trust to provide direct preventative support for older
carers. They have also partnered with the Asian Disability Project to help
ensure culturally competent supports (Sharing Caring Project, 2008).
Carers FIRST in the United Kingdom is an organization dedicated
to comprehensive help and support to caregivers of all types through
information and resources, discussion, advocacy, one-to-one support, and
groups where caregivers can meet others in similar situations. One of their
projects, ‘‘Older Carers of People with Learning Disabilities,’’ targets aging
caregivers of people with I/DD (Carers FIRST, 2008).
A pilot program from 1995–1999 in two regions of Australia titled
‘‘Options for Older Families’’ provided intensive support coordination on
immediate needs and future planning and access to discretionary funds to
older caregivers of adults with I/DD. The support coordination model was
proactive intervention and crisis prevention. In addition, the program
provided support workers and community educational sessions for the
families and support coordinators. Interviews with consumers and social
workers, file audits, focus groups, and a telephone survey after the inter-
vention revealed that the strong relationship between case workers and
families had many benefits. A major benefit reported by 66% of families
was increased access to out-of-home activities and services for people with
ID. Also, 59% of families reported that they were better able to make plans
and decisions about the future, including the process of separation and
letting go, and 48% of families reported that their trust or access to formal
services increased (Bigby et al., 2002). Further study on this initiative
revealed that there were few differences between the program targeted at
older caregivers and ‘‘mainstream’’ programs that had older caregivers as
clients (Bigby & Ozanne, 2005). While there have been a couple of reports
of various projects comprehensively addressing aging caregivers as noted
above, this study is one of few to report on an extensive evaluation of the
program’s effectiveness. It highlights the need for effective brokering of
services that can enable families to bridge both the aging and disability
networks, determine support needs, and find providers and services.
4.4. Sibling support interventions

Although siblings provide the most long-lasting relationships for adults with
I/DD and provide considerable social support to them (Krauss, Seltzer, &
Goodman, 1992), little data exist on interventions aimed at helping siblings in
these roles. Research on the impact of having a sibling with I/DD has found
mixed results, with some noting that having a sibling with I/DD may
contribute to depression, loneliness, behavioral problems and low self-esteem
(Bagenholm & Gillberg, 1991; Bischoff & Tingstrom, 1991; Cuskelly &
Gunn, 1993; McHale & Gamble, 1989; San Martino & Newman, 1974).
However, a meta-analysis of 25 studies relating to siblings of individuals with
I/DD revealed that these siblings have experienced only modest negative
effects, and the magnitude of these effects has traditionally been overstated
(Rossiter & Sharp, 2001).
Sibling relationships are considered unique in that they typically last
longer than any other relationship in a person’s lifetime (Cicirelli, 1995).
Adult siblings usually maintain high levels of involvement with their sibling
with disabilities across the life course (Seltzer, Begun, Seltzer, & Krauss,
1991; Zetlin, 1986). Since individuals with I/DD often require lifelong care
(Barron, McConkey, & Mulvany, 2006), their siblings are likely to take on
caregiving roles in their later lives (Bigby, 1997, 2000; Freedman et al.,
1997; Heller & Factor, 1994; Orsmond & Seltzer, 2000; Smith & Tobin,
1989). Though siblings are likely to become primary caregivers when
parents can no longer provide care, most are not included in family discus-
sions of future plans for their siblings with disabilities (Heller & Kramer,
2009; Krauss et al., 1992). A survey of 139 siblings of individuals with I/DD
revealed that siblings who were most involved in future planning were
older, provided more support to their siblings with disabilities and were
more involved in disability activities. These siblings expressed concerns
about the availability of services for their sibling with I/DD, helping their
sibling’s voice to be heard, and their sibling’s health, safety, and happiness
(Heller & Kramer, 2006). Major support needs of siblings were for support
groups, workshops/training on how to assume caregiving responsibility,
financial support, and printed material on making future plans.
Interventions for adult siblings of people with I/DD have taken several
forms, including conferences, support groups (both in-person and online),
and information provision. Organizations for child and adult siblings
currently exist in Australia, Belgium, Croatia, Guatemala, Greece, Iceland,
Ireland, Italy, Japan, New Zealand, the United Kingdom, and the United
States. These organizations sponsor various interventions for training, sup-
porting, and providing information to adult siblings. Conferences offer
adult siblings the opportunity to network with peers and to learn more
about specific issues of concern like future planning, service provision, and
balancing care responsibilities with the role of a sibling. Sibs, an organization
in the United Kingdom designed to enhance the lives of child and adult
siblings of individuals with I/DD, sponsors the ‘‘Working with Adult
Siblings of Disabled People’’ conference, targeted for adult siblings and
their supporters in London (Sibs, 2008). Beginning in 2007, the US national
Sibling Leadership Network initiated an annual conference for adult sib-
lings. Their first annual conference was held in Washington, DC, during
which attendees heard from a wide range of experts about sibling issues
across the lifespan, future planning, and policy (Heller & Kramer, 2007).
The second conference was held in Ohio the following year. The goal of
the Sibling Leadership Network is to provide opportunities for siblings of
Americans with I/DD to increase their involvement in disability advocacy,
policy-making and services concerning their siblings with disabilities.
Its mission is ‘‘to provide siblings of individuals with disabilities the infor-
mation, support, and tools to advocate with their brothers and sisters and
to promote the issues important to them and their entire families’’
(Heller, Kaiser, Meyer, Fish, Kramer, et al., 2008).
In addition to support groups, many organizations provide information
for adult siblings on their web sites on issues of importance to siblings. All of
the organizations mentioned in the previous section provide information
for adult siblings, including the UK Sibs group, Supporting Illinois Brothers
and Sisters, The Arc of the Greater Twin Cities, AHRC New York, Ohio
Sibs, and the Fox Valley Sibling Support Network (AHRC, 2008; Sibling
Support Project, 2008). Some organizations also provide workshops and
training sessions for adult siblings. The Sibling Support network sponsors
workshops for adult siblings that employ a large-group discussion format in
which adult sibling participants learn from researchers, clinicians, and other
siblings about topics of interest (Meyer, 2007).
While siblings voice a need for supports in providing care and advocacy
for their siblings with I/DD and some emerging promising practices exist to
address these need, no studies to date have examined the effectiveness of
these interventions. Furthermore, the research on these siblings has not

included the perspectives of the adults with disabilities regarding their
relationships with their siblings and the types of interventions that would
be most useful to their family.
5. Conclusion
While a large body of research exists on supportive intervention for
families of children with I/DD, the literature on families of adults with
I/DD is sparse. Literature examining the public support policies has mostly
examined the effectiveness of consumer-directed programs. However, the
empirical studies pertaining to families of adults with I/DD have mostly
focused on one state: Illinois. This was a good state to study in the earlier
years of its program since admission into the program was originally based
on a lottery system. This research needs to expand to other states, and
include the perspectives of adults with I/DD. One key issue is the impact
of having families as paid caregivers on the self-determination and well-
being of the adult with I/DD. The impact of training of families and
individuals in directing their own supports has also not yet been investigated
in this population.
While there are various programs that provide support for families of
adults with I/DD such as the HCBS Waiver, the National Caregiver
Support Program, the family support 360 programs, and the Aging and
Disability Resource Centers, the effectiveness of these programs for this
population has not been studied or documented. For example, we know
very little about the effectiveness of the Aging and Disability Resource
Centers in providing ‘‘one-stop’’ support coordination for families of adults
with I/DD.
The psychosocial interventions that have received the most attention for
families of adults with I/DD are those that address future planning. Some
evidence exists that training of families can result in more plans being
made and in increasing the choice-making of adults with I/DD. However,
the research needs to be expanded to larger samples and to inclusion of
the perspectives of the adult with I/DD. One of the biggest issues in future
planning is the unavailability of suitable services, with the large waiting lists
for residential services and with the growing deficits in state budgets.
Given the health and economic impact that lifelong caregiving can have
on mothers of adults with I/DD, particularly those from minority back-
grounds or those living in poverty, we need to have programs that assist
these mothers through financial supports and availability of adequate health
care. In addition, we need to develop and test models of health promotion
that can help mitigate depression and preventable health conditions.
In addition to parents, siblings are starting to gain the attention of

researchers and policy makers as they are likely to take over caregiving
when parents can no longer take care and as people with I/DD are living
longer. While various supports exist for siblings of adults with I/DD such as
support groups, training, and web sites, research examining the outcomes of
these efforts does not exist and is needed.
Further few programs exist that are intended to directly benefit the skills
and abilities of adults with I/DD. In the general population, there is the
recognition that learning and development are lifelong processes, but this
perspective does not seem to have influenced family support interventions.
Rather, many of the family support interventions seem to have different
goals such as assisting parents of adults with I/DDs with caregiving and
future planning. One area of skill development and support that has been
neglected is that of interventions that support persons with I/DD in caring
for their elderly parents.
Overall, the research presented has shown some evidence of the value of
public policies that include consumer-directed family support, the benefits
of helping families make future plans, and positive outcomes of psychoe-
ducational support group and targeted case coordination strategies for older
family caregivers. However, the research base is weak, often lacking in
controlled studies and longitudinal designs. Much of the data reported
only include outcome data following the interventions. The psychosocial
interventions tend to include small samples and a fairly homogeneous
population. Across the different type of interventions a need also exists for
further research to increase our understanding of sociocultural differences
among families. Such factors as poverty, immigrant status, race and ethnic-
ity, and religion can influence families’ needs and the effectiveness of various
interventions.
ACKNOWLEDGMENTS
Support for this research was provided through the Rehabilitation Research and Training
Center on Aging with Developmental Disabilities, National Institute on Disability and
Rehabilitation Research (Grant No. H133B080009).
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C H A P T E R N I N E

Family Support Interventions

International Review of Research in Mental Retardation, Volume 37 # 2009 Elsevier Inc.

home is likely to continue to increase. This increased demand for services

2. Impact of Having a Family Member with I/DD

Authors Intervention Subjects Research design Measures Findings

Authors Intervention Subjects Research design Measures Findings

benefits up to three respite or personal assistance services, self-efficacy, was associated

Authors Intervention Subjects Research design Measures Findings

support group function, health, (2) Stronger sense of

Authors Intervention Subjects Research design Measures Findings

with I/DD. Unmet needs for services and out-of-pocket disability-related

3. Family Support Public Policies and Programs

3.2. Financial support

‘‘supports’’ waivers are geared toward preventing out-of-home placement.

3.3. Impact of consumer direction on persons

I/DD; instead, studies have focused on consumer-directed supports for

caregiver burden, and increased community participation of individuals

Among families of people with I/DD in the Illinois consumer-directed

3.4. Programs targeted to aging caregivers

Supports for older caregivers may include information on future planning,

3.5. Family support 360

4. Family Support Psychosocial Interventions

4.1. Future planning

4.2. Support groups

4.3. Support coordination and direct service program

4.4. Sibling support interventions

these interventions. Furthermore, the research on these siblings has not

In addition to parents, siblings are starting to gain the attention of

Mahoney, K. J., Desmond, S. M., Simon-Rusinowitz, L., Loughlin, D. M., &

Minnesota, Research and Training Center on Community Living, Institute on

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