Overview of Family Support Interventions for Families of Adults with Intellectual And

In press, Editors M. Seltzer & L. Glidden, International Review of Research in Mental Retardation

Family Support Interventions for Families of Adults with Intellectual and Developmental Disabilities Tamar Heller, Ph.D. and Abigail Schindler Rehabilitation Research and Training Center on Aging with Developmental Disabilities Department of Disability and Human Development University of Illinois at Chicago Address Correspondence to:

Tamar Heller, Ph.D. Director, Rehabilitation Research and Training Center on Aging with Developmental Disabilities and Institute on Disability and Human Development Professor and Head, Department of Disability and Human Development University of Illinois at Chicago 1640 West Roosevelt Road Chicago, IL 60608-6904 Telephone: (312) 413-1647; Fax: (312) 413-1630 Email: [email protected] ACKNOWLEDGEMENTS 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 #H133B031134).

1 Introduction Families are typically considered the primary provider of support to people with intellectual and developmental disabilities (I/DD) (Fujuira, 1998; Fujuira & 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, 2008). Studies have shown that most individuals with disabilities prefer to remain at home, a preference family members typically share (Johnson, Kastner, and the Committee 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 fifties (for those with more severe disabilities or Down syndrome) to 71 years for adults with mild to moderate intellectual disabilities (Bittles 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 to 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 US, over 25% of family caregivers of individuals with I/DD are over the age of 60 years and another 35% are ages 41 to 59 years (Braddock, et al., 2008). 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 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 et al, 1999, 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 US 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 life-long 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 psycho-social interventions (such as support groups, future planning interventions, support coordination) targeted to specific subpopulations addressing various life transitions. The subpopulations include aging parents, adult siblings and the adults with I/DD

2 themselves. Table 1 summarizes peer reviewed empirically tested interventions that primarily targeted families of adults with I/DD and includes the methods and results. Impact of Having a Family Member with I/DD. While most families adapt well to having a family member with I/DD, the life-long impact of providing care to a family member with I/DD can affect the economic, health, and psycho-social well-being of family members. The well-being of mothers was explored in two large population based samples, the Midlife Development in the US (MIDUS) and the Wisconsin Longitudinal Study. Findings indicated that 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, Henry, Heller, & Chen, 2001; Seltzer, Greenberg, Floyd, Pettee, & Hong, 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 (Magaña & 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 co-residing 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, socio-economic 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, Krauss, & Hong, 2003; Orsmond, Seltzer, Greenberg & Krauss, 2006). 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 affording the financial costs of health care for themselves. Key service needs reported by families include respite services; case coordination; transportation; recreation services; and information regarding housing,

3 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 receiving companionship and help with household chores (Heller, Miller & Factor, 1997). Family Support Public Policies and Programs 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 ambiguous 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) mobilizing 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 five percent 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). 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 non-disabled 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; Fujuira, 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, reimbursement, or direct payments to providers (Turnbull et al., 2007). Two types of financial support are essential components of the family support system in the United States: cash subsidies and the Medicaid Home and Community-Based Support Waiver. Cash subsidies 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 (PAS) services for people with I/DD living in their own or family home (Braddock et al., 2008). 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 ‘‘noninstitutional’’ services (Lakin, Prouty, Alba, &

4 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, Prouty, Alba, & Scott, 2008; Rizzolo, Hemp, & Braddock, 2006). In 2006, the HCBS Waiver financed 70% of all family support services in the U.S., with over 45% of recipients of the waiver living with family members (Braddock, Hemp, & Rizzolo, 2008; 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, in press). Use of this waiver has played a significant role in financing the supports necessary for community living as an alternative to institutionalization (Lakin, Prouty, Alba, & Scott., 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” programs allow for 24-hour 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 non-traditional providers of care. Seven of these programs target adults with I/DD, eleven 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 US and internationally are based on consumer-directed models, in which persons with disabilities and their families define, choose and direct their own supports (Tilly, Wiener, & Cuellar, 2000; Tritz, 2005; Lundsgaard, 2005). Recent developments, such the Robert Wood Johnson Cash and Counseling demonstration projects (Phillips, et al., 2003) and the Independence 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 personal assistance services (PAS) has existed for over 30 years. Consumer- direction for the elderly and persons with I/DD, however, is a more recent development. 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, including 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 and Matthias, 2001; Benjamin, Matthias, & Franke, 2000; Benjamin, Franke, Matthias & Park, 1999; 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

5 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 direction 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, 2008) and many family support programs within the aging service systems (Feinberg & 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 Department of Human Services, findings indicated decreased out-of home placement, particularly institutional placements over a period of 8 years among 1,136 families (Heller & Caldwell, 2005). In a longitudinal study of the program’s first four 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 participating in a consumer-directed support program were also explored qualitatively. Financial benefits, benefits from respite and personal assistance services and prevention of

6 undesirable institutional placements were major themes that emerged and triangulated with the quantitative research (Caldwell, 2008). In the UK, 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, Desmond, Shoop & Squillace, 1997; Simon- Rusinowitz, Mahoney, & Benjamin, 2001). Among 139 programs in the US surveyed, 80% allowed hiring family (Doty & Flanagan, 2001). 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 consumers are able to hire their own personal assistants (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. 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 perceived 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, 1997). 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 rejection of services, and fear that their family member will be ‘taken

7 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 has been included in the 2005 reauthorization that will hopefully expand coverage to older caregivers of family members of any age 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 developed 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. Family Support 360. The Family Support 360 (FS 360) initiative, sponsored by the U.S. Department 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 in order 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, childcare, early intervention, education, employment, marriage education, transportation, housing, respite care, and assistance in maintaining parental rights (Administration on Developmental Disabilities, 2005). Many of these centers 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. Family Support Psycho-Social 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 carergivers 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. 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

8 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, The Planned Lifetime Advocacy Network (PLAN) (Etmanski, 1997) is a non-profit organization devoted to helping families of individuals with I/DD in future planning and in caring for their relative with a disability. Their 6-step guide for developing a future plan includes clarifying your vision, building relationships, controlling the home environment, preparing for decision making, developing your will and estate plan, and securing your plan. This intervention combines workshops, technical assistance, and interaction with mentor families and paid facilitators in order to develop future plans. In addition to in-person workshops, PLAN has introduced online and tele-learning 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 Psycho-educational Group Intervention for Aging Parents (Botsford & Rule, 2004) was a professionally led psycho-educational group intervention for older parents caring for an adult with I/DD at home. The intervention 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 = 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 co-leaders in the training. The intervention studied consisted of a legal/financial training session followed by five additional small-group

9 workshops. Pre-test and one-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 was no data reported on the perspectives of the adults with I/DD. 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 is 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, Seltzer, Krauss, & Kim, 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 in order 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 on-line 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, Marcus & Dunkle, 1996; Smith, Majesky & McClenny, 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. Participants appraised the sessions very positively and were most satisfied with the opportunities provided them for networking and sharing experiences with other families. Parents who co- resided 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, Marcus and Dunkle (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

10 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 fifteen members of the support group continued to meet once a month after the first five sessions held at the senior center. While psycho-educational 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. Support coordination and direct service program interventions for older caregivers. Several projects in the UK 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 UK is an organization that supports family caregivers over 55 years of age. It has produced information packets for caregivers, ‘lifebooks’ 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 UK 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 intervention 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, Ozanne, & Gordon, 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.

11 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 exists 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, Krauss, & Seltzer, 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 discussions of future plans for their siblings with disabilities (Heller & Kramer, in press; Krauss, Seltzer, & Goodman, 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, supporting, 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 UK 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 siblings. Their first annual conference was held in Washington, D.C., 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 information, 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, & Dufresne,

12 2008). The emerging Sibling Leadership Network has been successful in meeting several objectives that emanated from the first national conference: o Sibling research, training and advocacy initiatives have been included in Requests for Proposals from federal and state funding agencies. These include the recent Administration on Developmental Disabilities National Training Initiative on Self- Determination and several state grants from Developmental Disabilities Councils. (New York, Ohio, Utah). o Sibling Leadership Network leaders met with two senators regarding sibling issues and provided input to Barack Obama’s Disability Policy Committee during the campaign and developed a white paper on Recommendations for Research, Advocacy and Supports Relating to Siblings of People with Developmental Disabilities, which was finalized and approved at the conference (Heller et al., 2008). o Sibling networks have developed in Ohio, Tennessee, Illinois, New York, Washington, Wisconsin, and Minnesota as well as Japan, Australia, and Canada. Support groups for adult siblings exist across the world, both online and in-person. Individual states sponsor listservs for adult siblings, including the Illinois AdultSibsNet, and the Washington State Adult Sibs group. Adult siblings communicate with one another through message boards, creating a virtual support group for individuals in various locations. In-person support groups for adult siblings vary from formal settings to more informal get- togethers. The AHRC of New York City offers a support group for adult siblings of people with disabilities, along with a book club for adult siblings and individual, couple, group and family counseling services regarding sibling related issues (AHRC, 2008). In contrast, the Washington State Adult Sibs Group sponsors “Blue Moon” get-togethers, an informal time for camaraderie, information, and food (Sibling Support Project, 2008). In addition to support groups, many sibling organizations provide information on their websites 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. 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. 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-

13 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 psycho-social 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 life long caregiving can have on mothers of adults with I/DD, particularly those from minority backgrounds 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 IDD. 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 psycho-educational 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 includes outcome data following the interventions. The psycho-social 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 socio- cultural differences among families. Such factors as poverty, immigrant status, race and ethnicity, and religion can influence families’ needs and the effectiveness of various interventions.

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22 23 Table 1. Family Support Interventions for Adults with Intellectual and Developmental Disabilities*

24 Consumer Direction Author Interventio Subjects Research Measures Findings s n Design Caldwel Home 9 Qualitative Semi-structured Benefits expressed by families fit within three l (2007) Based intervention exploration of in-home central themes: (1) family financial benefits, Support families of experiences of interviews (2) benefits from respite and personal Services adults with families assistance services, and (3) prevention of Program intellectual participating in institutional placements. (HBSSP) and a consumer- Self- develop- directed directed mental support Service disabilities program. facilitation (I/DD) in a Benefits up consumer to 3 X directed social program security Caldwel HBSSP 209 Cross- Surveys: -Caregivers of adults in the program reported: l (2006) Self- intervention sectional -Household -Fewer out-of-pocket disability expenses directed +85 control comparison of income -Greater access to health care services families of economic, -Functioning of -Engagement in more social activities Service adults with health, and people with I/DD -Greater leisure satisfaction. facilitation I/DD who social -Out-of-pocket -Lower-income families reported better Amount of applied for outcomes disability mental health and access to health care than benefits up the HBSSP between expenses controls to 3 times Randomly families of -Employment social assigned adults with -Physical/ security by lottery I/DD in the mental health (SS) HBSSP and -Health care families on access waiting list - Social activities -Leisure satisfaction Caldwel HBSSP 38 Longitudinal Surveys: - Over time, families in the program l & Self- intervention study of impact -Unmet service experienced: Heller directed +49 control of a HBSSP at needs -decreased unmet service needs, (2007) services families (at three points -Service -higher service satisfaction, increased Service time 3) of over a 9-year satisfaction community participation of individuals with facilitation adults with period: Time 1 -Community disabilities Benefits up I/DD who (1991), Time 2 participation -decreased caregiver burden. to 3 times applied for (1995), and -Caregiving -At Time 3, families in the program had fewer SS the HBSSP Time 3 (2000). burden unmet needs and higher service satisfaction Randomly Cross- than did families on the waiting list. assigned sectional by lottery comparison of 25 groups at Time 3 Caldwel HBSSP 97 families Cross- Surveys: -More control by families of their *Only those interventions formally evaluated and reported in journals with outcome measures were included.