INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

’AAIDD

2014, Vol. 52, No. 2, 147–159

DOI: 10.1352/1934-9556-52.2.147

Family Caregivers of Adults With Intellectual and Developmental Disabilities: Outcomes Associated With U.S. Services and Supports Heather J. Williamson and Elizabeth A. Perkins

Abstract Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver outcomes and their association with existing services and supports for family caregivers of adults with IDD. Twenty-four articles were compiled using the PubMed, Web of Knowledge, PsychInfo, and CINAHL databases. Studies report economic, mental, and physical health outcomes from caregiving roles. The need for comprehensive caregiver assessment is discussed. Understanding and responding to the changing needs of family caregivers is vital to the U.S. disability service system to effectively prioritize formal resources and services. Key Words: caregiver assessment; quality of life; disability service systems; formal and informal supports Individuals with intellectual and developmental disabilities (IDD) are experiencing longer life expectancies, and families continue to be the primary providers of care (Factor, Heller, & Janicki, 2012). In 2011, 71% of individuals with IDD lived with a family caregiver (Braddock et al., 2013). Given the growth of the aging U.S. population, the aging adult population with IDD, and the reliance on families to provide a majority of caregiving, it is imperative that support services for families be accessible and effective. The U.S. health and social service systems for individuals with IDD and their families are unique from other countries, creating a necessity to understand U.S. specific outcomes of family caregivers. Currently, the Home and Community-Based Services (HCBS) waiver program, funded through Medicaid, is the primary funding source for longterm services and support for individuals with IDD and their families (Braddock et al., 2013). The HCBS waiver program was established in 1981 in order to encourage services and support to be provided in the community and to move away from institutional care (Punelli, 2010). Rizzolo, Friedman, Lulinski-Norris, and Braddock (2013) completed a national-level analysis of HCBS waiver services and spending for individuals with

H. J. Williamson and E. A. Perkins

IDD and found great variability across states in service definitions and allowable and unallowable costs. The complexity of the U.S. disability service system makes measuring family caregiver outcomes on a national level a complicated endeavor. However, the health and wellbeing of family caregivers is critical to supporting the existing system of care in the U.S. and will only become more critical with the aging of the population in the years to come (Talley & Crews, 2007a). In recent years, there have been several federal initiatives acknowledging the role of family caregivers. In 2012, the Administration on Intellectual and Developmental Disabilities (AIDD) awarded the National Association of State Directors of Developmental Disability Services (NASDDDS) $1.5 million over five years to expand their National Core Indicators (NCI) effort in more U.S. states (National Core Indicators, 2012a). The NCI’s goal is to develop a standard set of performance and outcome measures for states so they can track their performance over time, compare results across states, and develop national quality benchmarks for publicly funded IDD programs (National Core Indicators, 2012a). NCI includes family indicator outcome measures and is a voluntary state-led initiative with 34

147

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 2014, Vol. 52, No. 2, 147–159

participating states (National Core Indicators, 2012b). The U.S. Department of Health and Human Services, as part of the Affordable Care Act, has released $25 million to expand the Aging and Disability Resource Centers (ADRCs) into every state over the next three years to provide more home- and community-based supports to older adults and people with disabilities (U.S. Department of Health and Human Services, 2012a). ADRCs are designed to be one-stop shops for families to receive counseling on accessing supports and services (U.S. Department of Health and Human Services, 2012a). Also included in Healthy People 2020 are goals to increase the number of health departments completing surveillance of caregivers of people with disabilities and to increase health promotion programs to improve the health and well-being of caregivers of people with disabilities (U.S. Department of Health and Human Services, 2012b). In 2012, the Administration for Community Living (ACL) was created, which merged the Administration on Aging, the Office of Disability, and the Administration on Intellectual and Developmental Disabilities into one agency, to improve policy and program support (Administration for Community Living, 2012). Finally, the Affordable Care Act includes the Community First Choice Option and the Balancing Incentive Program, which are designed to help states move people needing long-term services and support from institutional care to home- and community-based care (The Arc, 2012). Recent reviews in the literature of HCBS waivers have called for an increased focus on the characteristics and needs of family caregivers while acknowledging the need for policy makers to have cost-effective information on the HCBS waiver services (Borrayo, Salmon, Polivka, & Dunlop, 2004; Lakin, Prouty, & Coucouvanis, 2007). With increasing demand for resources due to the aging U.S. population, there is also a need for more family support services (Parish & Lutwick, 2005; Seltzer & Krauss, 2001). The changing demographics of the U.S. population means that future research agendas need to capture more demographic data on family caregivers while also encouraging the evaluation of family support services across the disability and aging networks (Heller & Factor, 2008). Hodapp (2007) indicated few studies report on the impact of formal support services on family members. The purpose of this review is to report

148

’AAIDD DOI: 10.1352/1934-9556-52.2.147

family caregiver outcomes that have been identified with existing services and supports for family caregivers of adults with IDD in the U.S. Our primary interest is to review physical health, mental health, and economic hardships that have been associated with caregivers of adults with IDD. Drawing upon the results of the literature review, we then propose domains that should be considered in caregiver assessment for research, service delivery, and policy.

Methods A systematic literature review was conducted using the PubMed, Web of Knowledge, PsychInfo, and CINAHL databases. These databases were chosen to give full coverage of all disciplines whose academic journals are likely to include caregiving research. A broad variety of search terms were incorporated in several combinations in order to encapsulate the diverse range of caregiving terms, etiology of IDD, and terminology used to describe family support over the last three decades. Search terms included: family caregivers, adults, intellectual disabilities, developmental disabilities, autism, Down syndrome, cerebral palsy, family outcomes, family supports, family quality of life, family centered care, caregiver health, caregiver quality of life, managed care, HCBS waiver, and long term services and supports. We applied the search terms to keywords, article titles, and abstracts. We also included physical, mental, and economic as search terms/filters in order to further delineate relevant empirical studies. We adopted this liberal approach to search terms in recognition of the diverse population base that IDD can cover and changes in terminology over the years. Inclusion criteria included studies using U.S.based samples for their participants that reported outcomes of family caregivers of adults with IDD and were published between the years 1982–2013. This date range was chosen to coincide with the implementation of the HCBS waiver. Exclusion criteria included population samples from outside the U.S., articles that addressed outcomes of family caregivers of children with IDD, and articles that addressed outcomes of family caregivers of individuals with other disabilities (not IDD). A total of 103 articles were initially identified, which was reduced to 22 after applying the inclusion criteria. We also reviewed reference lists and citations from the identified articles as well as examining references from previous literature reviews. Using this

Outcomes of U.S. Services and Supports

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

’AAIDD

2014, Vol. 52, No. 2, 147–159

DOI: 10.1352/1934-9556-52.2.147

Table 1 Summary of Caregiver Outcome Domains Author(s)/year

Mental Physical Economic

Blacher & McIntyre, 2006 Black et al., 1985 Caldwell, 2006 Caldwell & Heller, 2007 Chen et al., 2001 Esbensen & Seltzer, 2011 Essex et al., 1997 Essex et al., 1999 Freedman et al., 1999 Fujiura et al., 1994 Ghosh et al., 2012 Hayden & Goldman, 1996 Hayden & Heller, 1997 Heller & Factor, 1991 Heller & Factor, 1993 Heller et al., 1997 Janicki et al., 2010 Krauss et al., 2005 Neely-Barnes et al., 2008 Perkins & Haley, 2010 Seltzer & Krauss, 1989 Seltzer et al., 1993 Seltzer et al., 2011 Yamaki et al., 2009

X X X X X

X

X

X

X X X X X X X X X X X X X X X X X X

X

X X X X X

method, we identified two further articles also meeting all inclusion criteria.

Findings Twenty-four studies met all our criteria for review and are summarized in Appendix A. Several articles reported multiple outcomes across the physical health, mental health, and economic domains. Table 1 presents the focal areas of the caregiver outcomes reported in each study.

Mental Health Outcomes Family caregiver mental health outcomes are related to the diagnosis of the adult with IDD,

H. J. Williamson and E. A. Perkins

the varying level of needs of the individual with IDD, and the length of caregiving role. Seltzer, Krauss, and Tsunematsu (1993) found that maternal caregivers of adults with Down syndrome report less burden compared to mothers of adults with other IDD. The Down syndrome behavioral phenotype was found to predict lower caregiver pessimism about the future and better life satisfaction among mothers of adults with Down syndrome (Esbensen & Seltzer, 2011). However, life satisfaction is lower if the adult with Down syndrome has more behavior problems (Esbensen & Seltzer, 2011). The greater the severity of the disability and the more complex the needs are related to higher caregiver stress and burden (Black, Cohn, Smull, & Crites, 1985; Heller, Miller, & Factor, 1997). Seltzer and Krauss (1989) found that maternal burden was higher when the adult with IDD had poorer physical health. However, if the adult with IDD is providing support to the caregiver, then the level of caregiver burden is lower (Heller et al., 1997). Demographic differences among caregivers were found to influence caregiver mental health outcomes. In comparing Latina and Anglo mothers of adults with IDD, Latina mothers had higher selfreported depressive symptoms and lower optimism than Anglo mothers (Blacher & McIntyre, 2006). Parental role also has an influence on caregiver mental health. Fathers are more pessimistic about the future and less likely to use coping strategies to reduce stress than mothers (Essex, Seltzer, & Krauss, 1999). Among mothers of adults with Down syndrome, maternal age at time of birth influenced caregiver burden with an older maternal age being associated with less burden (Esbensen & Seltzer, 2011). Caregivers less than 55 years of age were found to experience more burden than caregivers older than 55 years of age (Hayden & Heller, 1997). Chen, Ryan-Henry, Heller, and Chen (2001) found that maternal caregivers ages 55 and older had similar or better self-reported mental health than the comparative general population. Co-residence is also found to be associated with family caregiver mental health outcomes. Coresiding maternal caregivers of adults with autism spectrum disorder rate their situation more negatively compared to those not co-residing (Krauss, Seltzer, & Jacobson, 2005). In comparing parents of adults with IDD to parents of adults without a disability, by early old age (i.e. mid-60s) those who still co-resided

149

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

’AAIDD

2014, Vol. 52, No. 2, 147–159

with an adult with IDD reported lower marital stability, reduced leisure time, higher limitations in parental activities of daily living (ADLs), and lower health related quality of life (Seltzer, Floyd, Song, Greenberg, & Hong, 2011). Seltzer and colleagues also noted that the parents of adults with IDD had overall poorer mental health compared to parents of adults without a disability. The literature indicates that the family caregivers’ relationships with services and supports are also associated with caregiver mental health. Over time, family caregivers of adults with IDD are more likely to use respite if they report higher caregiver burden (Freedman, Griffiths, Krauss, & Seltzer, 1999). Older family caregivers were less likely to report having unmet service needs than younger caregivers (Hayden & Heller, 1997). Caregivers who report more unmet service needs or needing a greater amount of services experience higher caregiver burden and stress (Hayden & Goldman, 1996; Heller & Factor, 1993). Neely-Barnes, Graff, Marcenko, and Weber (2008) noted that families who are highly involved in coordinating services receive more services, report better perceptions of provider competence, and have more family satisfaction. Comparing caregivers of adults with IDD receiving consumer-directed services to those on a waiting list, caregivers receiving consumerdirected services have less caregiver burden, and lower income families had significantly better mental health compared to lower income families on the waiting list (Caldwell, 2006; Caldwell & Heller, 2007). The mental health of the family caregiver and the expansion of their caregiving role are related to their desire for out-of-home placement. Greater caregiver stress and burden can result in an increased desire for out-of-home placement (Black et al., 1985; Heller & Factor, 1991). Being a lifelong caregiver to an adult with IDD does not prevent the possibility of becoming a caregiver to other family members (Perkins & Haley, 2010). Perkins and Haley (2010) describe this as ‘‘compound caregiving’’ due to the ‘‘compounded’’ duties for multiple care recipients, and found that many caregivers are either currently, have previously been, or anticipate becoming a compound caregiver. Perkins and Haley (2010) found that caregivers who had become compound caregivers expressed an increased desire to place their adult son or daughter with an IDD into residential care. Caregiver wellbeing has also been found to be compromised

150

DOI: 10.1352/1934-9556-52.2.147

when undertaking multiple caregiving roles and is associated with higher levels of depression (Ghosh, Greenberg, & Seltzer, 2012).

Physical Health Outcomes There are mixed results of physical health outcomes associated with caregiving in the literature. Female caregivers of adults with IDD living in the family home compared to the females in the general U.S. population perceived their health to be better (Yamaki, Hsieh, & Heller, 2009). However, among these same female caregivers of adults with IDD, it was found that they had higher prevalence of arthritis, high blood pressure, obesity, and limitations in activities (Yamaki et al., 2009). Mothers ages 55–64 in a caregiving role to adults with IDD rated their physical health better than the general population (Chen et al. 2001). However, Seltzer et al. (2011) found that parental caregivers of individuals with IDD compared to parents of individuals without any disability experienced poorer physical health as they age. Worsening caregiver physical health can result in increased preference for out-of-home placement (Essex, Seltzer, & Krauss, 1997). The health status and diagnosis of the care recipient may or may not influence caregiver physical health. Seltzer and Krauss (1989) found that the worse the physical health of the adult with IDD, the worse the caregiver physical health. Caregivers of older adults with Down syndrome did not report any caregiving health-related problems regardless of whether their care recipient had developed mild to moderate dementia (Janicki, Zendell, & DeHaven, 2010), suggesting an ability to adapt to changing caregiving demands. Comparing maternal caregivers of adults with Down syndrome to maternal caregivers of adults with other IDD, the physical health was similar between groups (Seltzer et al., 1993).

Economic Outcomes Caregivers report financial impacts including an overall lower socioeconomic status among early old age co-residing parents (Seltzer et al., 2011). Receiving support services is an important factor in reducing family out-of-pocket disability-related expense (Caldwell, 2006). Among households including an adult son/daughter with IDD, lower income households report a higher proportion of out-of-pocket disability supports spending (Fujiura,

Outcomes of U.S. Services and Supports

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 2014, Vol. 52, No. 2, 147–159

Roccoforte, & Braddock, 1994). Family caregivers of adults with IDD with lower income in later life report lower overall mental health (Chen et al., 2001).

Discussion and Implications The U.S. disability system with its emphasis for prioritizing home- and community-based care over institutional care automatically results in greater reliance upon family caregivers. The existing research demonstrates physical health outcomes, mental health outcomes, and economic impacts due to the lifelong caregiving of a family member with an IDD. Family caregivers who experience physical and mental health setbacks or take on multiple caregiving roles could be more apt to seek out-of-home placements for their son or daughter with IDD. Tailoring support to consider caregiver challenges, as well as availability of informal supports may prevent unwanted transfer to out-ofhome placements, and more equitably prioritize support. Better understanding the needs of family caregivers can be accomplished through caregiver assessments that consider the diverse challenges, supports, and resources each caregiver may access. Furthermore, it is crucial that family support services frequently update such caregiver assessments in order that they continue to remain responsive and adapt to the changing and evolving circumstances experienced by many caregivers. Caregiver assessment tools are available for families of individuals with IDD that can be found in the literature. The Family Quality of Life (FQOL) Survey and the Beach Center FQOL Scale are designed to evaluate the needs of family caregiver of individuals with IDD (Hoffman, Marquis, Poston, Summers, & Turnbull, 2006; Samuel, Hobden, Leroy, & Lacey, 2012). However, this systematic review did not reveal any U.S-based study that has utilized either FQOL assessments with caregivers of adults with IDD. The Family Caregiver Alliance (2006) has developed a toolkit titled, ‘‘Caregivers Count Too! A Toolkit to Help Practitioners Assess the Needs of Family Caregivers,’’ but this is not specific to adults with IDD and their caregivers. The American Psychological Association (2013) provides guidance on caregiver assessment methodology and recommended domains of caregiver assessment in their ‘‘Caregiver Briefcase’’ for practicing psychologists.

H. J. Williamson and E. A. Perkins

’AAIDD DOI: 10.1352/1934-9556-52.2.147

In a systematic review on measuring family outcomes for families with a member with an IDD, Turnbull, Summers, Lee, and Kyzar (2007) found that the maternal role was emphasized most often and a single family member’s perspective was utilized to reflect family level outcomes. Park et al. (2003) developed and are still validating a FQOL survey for families of individuals with IDD in the U.S. Increasing clinician awareness of the changing roles and demands upon caregivers, while also encouraging interdisciplinary assessment processes, are both needed (Bailey et al., 2012; Perkins & Haley, 2010; Phelps, Hodgson, McCammon, & Lamson, 2009). Grant, Ramcharan, and Flynn (2007) recommended that caregiver assessments for this population should capture caregiver resilience by addressing their strengths while respecting their expertise, norms, and expectations. Perkins (2011) discussed the need for caregiver assessments to be responsive to the changing support needs of caregivers, which vary over time due to changing caregiver circumstances. While the primary caregiver is the main focus of this review, the entire family can be affected by caregiving decisions present and future. With the aging U.S. population, the role of siblings in providing care is likely to increase (Heller & Kramer, 2009). Arnold, Heller, and Kramer (2012) found adult siblings of people with DD report wanting more acknowledgement of their caregiving role from disability services and supports system. Due to their potential to become future caregivers, it will become increasingly more important to include siblings in caregiver assessments. Overall, identifying assessment tools and domains that are most appropriate for assessing aging family caregivers of adults with IDD is still a work in progress. The United States Senate Commission on Long Term Care (2013) recommended that the existing assessment requirements should be expanded to include the needs of the family caregiver. In practice, Collins and Swartz (2011) have encouraged primary care physicians to complete caregiver assessments to identify caregiver needs and resources. In addition, Ganz (2007) recommended financial counseling to parents of adults with IDD. In order to control Medicare and Medicaid expenditures, family assessments to guide family support services have also been recommended (Feinberg, 2007). Unfortunately, only a third of states include family caregiver assessment as part of their

151

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

’AAIDD

2014, Vol. 52, No. 2, 147–159

DOI: 10.1352/1934-9556-52.2.147

Table 2 Proposed Caregiver Assessment Domains Ecological model level

Caregiver domains Co-dependency versus self-determination in decision making Optimizing self-determination needs of care recipient and caregiver. Continued co-residency versus exploration of alternate residential placement.

Individual & interpersonal (Microsystem)

Organizational & community Public policy (Exosystem) (Macrosystem)

X X

X

X X X

X

Compound caregiving Onset, intensity, and duration of additional caregiving responsibilities. Impact upon caregiver and care recipient relationship. Anticipated caregiving in the future. Family cohesiveness and network Which family members to involve. Who can be relied upon for assessment and planning purposes.

X X

X

Informal and formal support Amount and quality of support from family and friends. Amount and quality of support from providers and agencies.

X X

X

X X X X

X X X X

X X

X X X

X

X

X

X X

X X

Future planning Caregiver succession planning. Contingency plans for short-term. Retirement and financial planning. Availability of future planning resources. Health-related quality of life Physical and mental wellbeing. Personal commitment to health and wellness. Stress management and coping skills. Life satisfaction Personal and professional goal attainment for caregiver and care recipient. Economic security. Support in goal attainment from existing policies.

X

Service utilization Satisfaction with services. Respite care. Unmet need/waiting list status. Service response to changes in caregiving responsibilities.

152

X

X X X

X

X

X

Outcomes of U.S. Services and Supports

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 2014, Vol. 52, No. 2, 147–159

Medicaid HCBS waiver evaluations (Kelly, Wolfe, Gibson & Feinberg, 2013). Understanding and responding to the needs of family caregivers is a public health issue, and therefore it has been strongly advocated that additional funding should go to support caregiver resources (Collins & Swartz, 2011; Talley & Crews 2007a). Public health systems need a strategy to address caregiving, and the Caregiver Module added to the Behavioral Risk Factor Surveillance System (BRFSS) in 2009 was a welcome first step for public health surveillance of caregiver outcomes (Talley & Crews, 2007b). However, the BRFSS Caregiver Module was only implemented in 2009 and 2010 and in only a small sample of states (Centers for Disease Control and Prevention [CDC], 2013). In 2008, the CDC produced a monograph titled ‘‘Assuring Healthy Caregivers, A Public Health Approach to Translating Research into Practice: The RE-AIM Framework,’’ to guide a public health response to caregiving needs (CDC, 2008). However, the CDC caregiver monograph is specific to the aging population requiring caregiving and not the IDD population. As our society becomes more diverse, a holistic approach is needed in the design and implementation of needed caregiver programs and policies so they are meaningful (Lee, 2007). Eckenwiler (2007) proposed using the ecological model to inform caregiver research, policy, and practice given the complexity of the caregiving role. The ecological model allows for a more holistic view of the caregiving role, acknowledging the intertwined relationships between the caregiver, their immediate social network, community, and larger systems of care (Eckenwiler, 2007). In Table 2 we propose a list of critical domains to include in a comprehensive caregiver assessment using the ecological model. A caregiver assessment that addresses all the domains we highlight will ensure that the caregiver’s own needs, support needs, the needs of the care recipient, and both current and anticipated needs will be considered, while upholding guiding philosophies of service delivery including selfdetermination, and respect for family partnerships. Recent federal initiatives hold much promise to providing much needed resources for family caregivers, and their care recipients with IDD. As the disability service system relies more on homeand community-based services, evaluating how existing and new initiatives help to improve quality

H. J. Williamson and E. A. Perkins

’AAIDD DOI: 10.1352/1934-9556-52.2.147

of life for family caregivers will be vital to their success.

Conclusion This review indicates that the needs of family caregivers are complex and varied depending on diagnosis, characteristics of the family situation, and changing caregiving roles. This literature review found mental health, physical health, and economic outcomes that could be identified though caregiver assessments and addressed with interventions. Economic challenges are being addressed through several mechanisms including paying family caregivers, enhancing labor policies to provide more flexibility for family caregivers, providing economic counseling, and providing tax incentives. The complexity and variability of the U.S. disability service system makes implementation of evaluation measures challenging. However, the aging U.S. population, aging population of adults with IDD, and emphasis on home- and community-based services means understanding the needs of family caregivers is critical. In addition, recent estimates from 2009 indicate that 221,898 individuals with IDD in the U.S. are currently on a wait list to receive HCBS waiver services relying on natural supports with no assistance from formal services and supports (Kaiser Family Foundation, 2011). Comprehensive assessment of formal and informal caregiver needs and supports available and/or accessible can help prioritize formal resources and services more effectively.

References Administration for Community Living. (2012). Introducing the administration on community living. Retrieved from http://www.hhs.gov/acl/ American Psychological Association. (2013). Caregiver briefcase assessment tools. Retrieved from http://www.apa.org/pi/about/publications/ caregivers/practice-settings/assessment/tools/ index.aspx Arnold, C. K., Heller, T., & Kramer, J. (2012). Support needs of siblings of people with developmental disabilities. Intellectual & Developmental Disabilities, 50, 373–382. Bailey, D. B., Raspa, M. R., Bishop, E., Mitra, D., Martin, S., Wheeler, A., & Sacco, P. (2012).

153

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 2014, Vol. 52, No. 2, 147–159

Health and economic consequences of Fragile X Syndrome for caregivers. Journal of Developmental & Behavioral Pediatrics, 33, 705–712. Blacher, J., & McIntyre, L. L. (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability: Cultural differences in family impact. Journal of Intellectual Disability Research, 50, 184–198. Black, M. M., Cohn, J. F., Smull, M. W., & Crites, L. S. (1985). Individual and family factors associated with risk of institutionalization of mentally retarded adults. American Journal of Mental Deficiency, 90, 271–276. Borrayo, E. A., Salmon, J. R., Polivka, L., & Dunlop, B. D. (2004). Who is being served? Program eligibility and home-and communitybased services use. Journal of Applied Gerontology, 23, 120–140. Braddock, D., Hemp, R., Rizzolo, M. C., Tanis, E. S., Haffer, L., Lulinski, A., & Wu, J. (2013). State of the states in developmental disabilities, 2013: The great recession and its aftermath. Washington, DC: American Association on Intellectual and Developmental Disabilities. Caldwell, J. (2006). Consumer-directed supports: Economic, health, and social outcomes for families. Mental Retardation, 44, 405–417. Caldwell, J., & Heller, T. (2007). Longitudinal outcomes of a consumer-directed program supporting adults with developmental disabilities and their families. Intellectual & Developmental Disabilities, 45, 161–173. Centers for Disease Control and Prevention. (2008). Assuring health caregivers, a public health approach to translating research into practice: The RE-AIM framework. Retrieved from http://www.cdc.gov/aging/pdf/caregiving_ monograph.pdf Centers for Disease Control and Prevention. (2013). Behavioral risk factor surveillance system. Retrieved from http://www.cdc.gov/brfss/ Chen, S. C., Ryan-Henry, S., Heller, T., & Chen, E. H. (2001). Health status of mothers of adults with intellectual disability. Journal of Intellectual Disability Research, 45, 439–449. Collins, L. G., & Swartz, K. (2011). Caregiver care. American Family Physician, 83, 1309–1317. Eckenwiler, L. A. (2007, November). An ecological framework for caregiver [Letter to the editor]. American Journal of Public Health, 97, 1930–1931.

154

’AAIDD DOI: 10.1352/1934-9556-52.2.147

Esbensen, A. J., & Seltzer, M. M. (2011). Accounting for the ‘‘Down syndrome advantage.’’ American Journal on Intellectual & Developmental Disabilities, 116, 3–15. Essex, E. L., Seltzer, M. M., & Krauss, M. W. (1997). Residential transitions of adults with mental retardation: Predictors of waiting list use and placement. American Journal on Mental Retardation, 101, 613–629. Essex, E. L., Seltzer, M. M., & Krauss, M. W. (1999). Differences in coping effectiveness and well-being among aging mothers and fathers of adults with mental retardation. American Journal on Mental Retardation, 104, 545–563. Factor, A., Heller, T., & Janicki, M. (2012). Bridging the aging and developmental disabilities service networks: Challenges and best practices. Retrieved from http://www.rrtcadd.org/ resources/Resources/Publications/Policy/Service/ Briefs-&-Reports/Bridging-Report.pdf Family Caregiver Alliance. (2006). Caregivers count too! A toolkit to help practitioners assess the needs of family caregivers. Retrieved from http://caregiver.org/caregiver/jsp/content/ pdfs/Assessment_Toolkit_20060802.pdf Feinberg, L. F. (2007, May). Family support policies and practices: A focus on caregiver assessments. Proceedings: State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Community Living. Atlanta, GA (pp. 124–128). Freedman, R. I., Griffiths, D., Krauss, M. W., & Seltzer, M. M. (1999). Patterns of respite use by aging mothers of adults with mental retardation. Mental Retardation, 37, 93–103. Fujiura, G. T., Roccoforte, J. A., & Braddock, D. (1994). Costs of family care for adults with mental retardation and related developmental disabilities. American Journal on Mental Retardation, 99, 250–261. Ganz, M. (2007). Lifetime distribution of the incremental costs of autism. Archives of Pediatric Adolescent Medicine, 161, 343–349. Ghosh, S., Greenberg, J. S., & Seltzer, M. M. (2012). Adaptation to a spouse’s disability by parents of adult children with mental illness or developmental disability. Psychiatric Services, 63, 1118–1124. Grant, G., Ramcharan, P., & Flynn, M. (2007). Resilience in families with children and adult members with intellectual disabilities: Tracing

Outcomes of U.S. Services and Supports

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 2014, Vol. 52, No. 2, 147–159

elements of a psycho-social model. Journal of Applied Research in Intellectual Disabilities, 20, 563–575. Hayden, M. F., & Goldman, J. (1996). Families of adults with mental retardation: Stress levels and need for services. Social Work, 41, 657–667. Hayden, M. F., & Heller, T. (1997). Support, problem-solving/coping ability, and personal burden of younger and older caregivers of adults with mental retardation. Mental Retardation, 35, 364–372. Heller, T., & Factor, A. (1991). Permanency planning for adults with mental retardation living with family caregivers. American Journal on Mental Retardation, 96(2), , 163–176. Heller, T., & Factor, A. (1993). Aging family caregivers: Support resources and changes in burden and placement desire. American Journal on Mental Retardation, 98, 417–426. Heller, T., & Factor, A. (2008). Family support and intergenerational caregiving: Report from the state of science in aging and developmental disabilities conference. Disability & Health Journal, 1, 131–135. Heller, T., & Kramer, J. (2009). Involvement of adult siblings of persons with developmental disabilities in future planning. Intellectual & Developmental Disabilities, 47, 208–219. Heller, T., Miller, A. B., & Factor, A. (1997). Adults with mental retardation as supports to their parents: Effects on parental caregiving appraisal. Mental Retardation, 35, 338–346. Hodapp, R. M. (2007). Families of persons with Down syndrome: New perspectives, findings, and research and service needs. Mental Retardation & Developmental Disabilities, 13, 279–287. Hoffman, L., Marquis, J., Poston, D., Summers, J. A., & Turnbull, A. (2006). Assessing family outcomes: Psychometric evaluation of the Beach Center Family Quality of Life scale. Journal of Marriage and Family, 68, 1069–1083. Janicki, M. P., Zendell, A., & DeHaven, K. (2010). Coping with dementia and older families of adults with Down syndrome. Dementia, 9, 391– 407. Kaiser Family Foundation. (2011). Waiting lists for Medicaid 1915(c) home and community-based (HCBS) waivers. Retrieved from http://kff.org/ medicaid/state-indicator/waiting-lists-for-hcbswaivers-2010/ Kelly, K., Wolfe, N., Gibson, M. J., & Feinberg, L. (2013). Listening to family caregivers: The

H. J. Williamson and E. A. Perkins

’AAIDD DOI: 10.1352/1934-9556-52.2.147

need to include family caregiver assessment in Medicaid home- and community-based service waiver programs. Retrieved from http://www. aarp.org/content/dam/aarp/research/public_ policy_institute/ltc/2013/the-need-to-includefamily-caregiver-assessment-medicaid-hcbswaiver-programs-report-AARP-ppi-ltc.pdf Krauss, M. W., Seltzer, M. M., & Jacobson, H. T. (2005). Adults with autism living at home or in non-family settings: Positive and negative aspects of residential status. Journal of Intellectual Disability Research, 49, 111–124. Lakin, K. C., Prouty, R., & Coucouvanis, K. (2007). HCBS recipients are increasingly likely to live with parents or other relatives. Intellectual & Developmental Disabilities, 45, 359–361. Lee, B. (2007, November). Caregiving: A far-reaching public health concern [Letter to the editor]. American Journal of Public Health, 97, 1931. National Core Indicators. (2012a). National core indicators news. Retrieved from http://www. nationalcoreindicators.org/news/ National Core Indicators. (2012b). Participating NCI states. Retrieved from http://www.national coreindicators.org/states/ Neely-Barnes, S., Graff, J. C., Marcenko, M., & Weber, L. (2008). Family decision making: Benefits to persons with developmental disabilities and their family members. Intellectual & Developmental Disabilities, 46, 93–105. Parish, S. L., & Lutwick, Z. E. (2005). A critical analysis of the emerging crisis in long-term care for people with developmental disabilities. Social Work, 50, 345–354. Park, J., Hoffman, L., Marquis, J., Turnbull, A. P., Poston, D., Mannan, H., … Nelson, L. L. (2003). Toward assessing family outcomes of service delivery: Validation of a family quality of life survey. Journal of Intellectual Disability Research, 47, 367–384. Perkins, E. A. (2011). Compound caregivers: overlooked and overburdened [White paper]. Tampa, Florida: University of South Florida, Florida Center for Inclusive Communities. Retrieved from http://flfcic.fmhi.usf.edu/docs/ FCIC_CompoundCaregivers_070811.pdf Perkins, E. A., & Haley, W. E. (2010). Compound caregiving: When lifelong caregivers undertake additional caregiving roles. Rehabilitation Psychology, 55, 409–417.

155

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 2014, Vol. 52, No. 2, 147–159

Phelps, K. W., Hodgson, J. L., McCammon, S. L., & Lamson, A. L. (2009). Caring for an individual with autism disorder: A qualitative analysis. Journal of Intellectual & Developmental Disability, 34, 27–35. Punelli, D. (2010). Medicaid home- and communitybased waiver programs. Retrieved from http:// www.house.leg.state.mn.us/hrd/pubs/waiver.pdf Rizzolo, M. C., Friedman, C., Lulinski-Norris, A., & Braddock, D. (2013). Home- and community-based services (HCBS) waivers: A nationwide study of the states. Intellectual & Developmental Disabilities, 51, 1–21. Samuel, P. S., Hobden, K. L., LeRoy, B. W., & Lacey, K. K. (2012). Analysing family service needs of typically underserved families in the USA. Journal of Intellectual Disability Research, 56, 111–128. Seltzer, M. M., Floyd, F. J., Song, J., Greenberg, J. S., & Hong, J. (2011). Midlife and aging parents of adults with intellectual and developmental disabilities: Impacts of lifelong parenting. American Journal on Intellectual & Developmental Disabilities, 116, 479–499. Seltzer, M. M., & Krauss, M. W. (1989). Aging parents of adult mentally retarded children: Family risk factors and sources of support. American Journal on Mental Retardation, 94, 303–312. Seltzer, M. M., & Krauss, M. W. (2001). Quality of life of adults with mental retardation/developmental disabilities who live with family. Mental Retardation & Developmental Disabilities Research Reviews, 7, 105–114. Seltzer, M. M., Krauss, M. W., & Tsunematsu, N. (1993). Adults with Down syndrome and their aging mothers: The diagnostic group differences. American Journal on Mental Retardation, 97, 496–508. Talley, R. C., & Crews, J. E. (2007a). Framing the public health of caregiving. American Journal of Public Health, 97, 224–228. Talley, R. C., & Crews, J. E. (2007b, November). Talley and Crews respond [Letter to the editor]. American Journal of Public Health, 97, 1931–1932. The Arc. (2012). The Affordable Care Act: What disability advocates need to know. Retrieved from http://www.thearc.org/document.doc?id5 3898

156

’AAIDD DOI: 10.1352/1934-9556-52.2.147

Turnbull, A. P., Summers, J. A., Lee, S. H., & Kyzar, K. (2007). Conceptualization and measurement of family outcomes associated with families of individuals with intellectual disabilities. Mental Retardation & Developmental Disabilities, 13, 346–356. U.S. Department of Health and Human Services. (2012a). Healthy people 2020 disability and health summary of objectives. Retrieved from http:// www.healthypeople.gov/2020/topicsobjectives 2020/objectiveslist.aspx?topicId59 U.S. Department of Health and Human Services. (2012b). HHS announces availability of funding to help older adults, people with disabilities access long-term services and supports to thrive in their communities. Retrieved from http:// www.hhs.gov/news/press/2012pres/05/20120531 d.html U.S. Senate Commission on Long Term Care. (2013). Report to the Congress. Retrieved from http://www.ltccommission.senate.gov/ Yamaki, K., Hsieh, K., & Heller, T. (2009). Health profile of aging family caregivers supporting adults with intellectual and developmental disabilities at home. Intellectual & Developmental Disabilities, 47, 425–435.

Received 7/11/2013, first decision 8/28/2013, second decision 12/4/2013, accepted 12/18/2013. For Dr. Perkins, this project was supported by a grant awarded to the Florida Center for Inclusive Communities, A University Center for Excellence in Developmental Disabilities Education, Research, and Services (#90-DD-0668) by the Administration on Intellectual and Developmental Disabilities, Administration for Community Living, Department of Health and Human Services. Authors: Heather J. Williamson (e-mail: [email protected]. edu), University of South Florida, College of Public Health, Department of Community and Family Health, 13201 Bruce B. Downs Blvd., MDC0056, Tampa, FL 33612, USA; Elizabeth A. Perkins, Florida Center for Inclusive Communities/UCEDD, University of South Florida.

Outcomes of U.S. Services and Supports

H. J. Williamson and E. A. Perkins

87

108

155

461

Chen et al., 2001

Esbensen & Seltzer, 2011

Essex et al., 1997

294

31

N 282

Caldwell & Heller, 2007

Caldwell, 2006

Black et al., 1985

Author(s)/year Blacher & McIntyre, 2006

Appendix A Summary of Notable Studies

Longitudinal

Longitudinal

Cross-sectional

Longitudinal

Cross-sectional

Cross-sectional

Study design Cross-sectional

Higher caregiver stress if adult son/daughter has more complex needs. Out-of-home placement more likely with higher caregiver stress. As compared to caregivers on a waiting list, caregivers in program reported less out-of-pocket disability-related expenses, increased access to health care, and more leisure satisfaction. Lower income families in program better reported mental health than lower income families on the waiting list. Caregivers in program experienced less caregiver burden, fewer unmet service needs, and more satisfaction, as compared to families on the wait list. Caregiver at midlife self-reported better physical health than general population. Mid-life and later-life aged mothers had similar or better selfreported mental health than general population. Lower family income in later life associated with poor mental health. Caregiver burden higher if younger maternal age and fewer social supports. Behavior problems predicted lower maternal life satisfaction. Less caregiver pessimism about the future and higher life satisfaction if Down syndrome behavioral phenotype. Poorer maternal caregiver physical health predicted residential placement.

Major finding(s) Maternal stress or depression does not vary by diagnosis. Latina mothers more depressive symptoms, lower morale, and higher positive effect than Anglo mothers.

2014, Vol. 52, No. 2, 147–159

Maternal caregivers of adult with ID, caregiver mean age 66

Maternal caregivers of adults with Down syndrome, caregiver mean age 68, age range 56–86

Caregivers of individuals with developmental disabilities, caregiver mean age 59 Maternal caregivers of adults with ID, caregiver mean age 60.2 for midlife (55–64 years), caregiver mean age 74 for later life ($65 years)

Caregivers of adults with DD, caregiver mean age 57

Sample characteristics Caregivers of adults with IDD. 132 Latino and 150 Anglo, caregiver mean age 49, age range 31–70 years Caregiver adult with ID, caregiver mean age 59

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES DOI: 10.1352/1934-9556-52.2.147

’AAIDD

157

158

80

105

Hayden & Heller, 1997

Heller et al., 1997

105

Hayden & Goldman, 1996

62

1690

Ghosh et al., 2012

Heller & Factor, 1993

99

Fujiura et al., 1994

100

275

Freedman et al., 1999

Heller & Factor, 1991

N 133

Author(s)/year Essex et al., 1999

Appendix A Continued Sample characteristics Mothers and fathers of adults with ID, mothers mean age 68 (age range 59–83), fathers mean age 70 (age range 56–84) Maternal caregivers of adults with ID, caregiver mean age 70 Households with adult son/daughter with IDD 227 caregivers of adult son/ daughter with DD or mental illness, 1,463 did not have a son/ daughter with disability or mental illness Family caregiver of an adult with ID, caregiver age range 30–70+, 62.9% between ages 50–69 Family caregiver of adult with ID, caregiver mean age 58, age range 32–86, younger caregivers are 55 years or younger, older caregivers are 56 years or older Family caregivers of adults with ID, caregiver mean age 63, age range 31–98 Primary caregivers of adults with ID, caregiver mean age 65, age range 33–81 Primary caregivers of adults with ID, caregiver mean age 68

Greater severity of disability then higher caregiver burden, lower caregiver burden when support is provided by the adult with ID.

Higher unmet service needs and less informal supports associated with higher caregiver burden.

Longitudinal

2014, Vol. 52, No. 2, 147–159

Cross-sectional

Higher caregiver burden associated with desire for out-ofhome placement.

Younger caregivers more likely to report unmet service needs and to experience caregiver burden than older caregivers.

Longitudinal

Cross-sectional

Higher amount and intensity of service needs related to higher caregiver stress.

Family caregiver more likely to use respite if higher caregiver burden. Higher proportion of household out-of-disability support spending among lower income households. Simultaneous caregiver roles have additive effects on lowering caregiver wellbeing.

Major finding(s) Mothers more likely than fathers to use coping strategies that lowered their caregiving-related stress. Fathers were more pessimistic about the future.

Cross-sectional

Longitudinal

Cross-sectional

Longitudinal

Study design Longitudinal

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES DOI: 10.1352/1934-9556-52.2.147

’AAIDD

Outcomes of U.S. Services and Supports

H. J. Williamson and E. A. Perkins

203

160

1262

206

Seltzer & Krauss, 1989

Seltzer et al., 1993

Seltzer et al., 2011

Yamaki et al., 2009

547

Neely-Barnes et al., 2008

91

133

Krauss et al., 2005

Perkins & Haley, 2010

N 17

Author(s)/year Janicki et al., 2010

Appendix A Continued

Maternal caregivers of adults with Down syndrome and maternal caregivers of adults with other ID, maternal caregiver mean age 66 Parents of children with IDD and parents of children without a disability, mean age 65 Female caregivers of adults with IDD at home compared to women in the general population, caregiver mean age 58

Sample characteristics Caregivers of adults with Down syndrome with or without mild to moderate dementia, caregiver mean age 67, age range 49–84 Maternal caregivers of adults with autism spectrum disorder, mother mean age 61 Family caregivers of adults with DD, 90.7% parents, 5.4% siblings, 3.9% other Aging caregivers of adult son/ daughter with ID, caregiver mean age 60 years Maternal caregivers of adult with ID, caregiver mean age 66 years

Caregivers not co-residing rate their situation more positive than those co-residing. Highly involved families receive more services, have more family member satisfaction, and have higher sense of provider ability. Compound caregivers had an increased desire to place son/ daughter with ID in residential care

Longitudinal

Cross-sectional

Early old age, parents of adults with IDD had poorer mental health and physical health. Co-residence changed patterns of parental outcomes. Caregivers of adults with IDD perceived their health as better than women in general population. Caregivers of adults with IDD had higher prevalence of arthritis, high blood pressure, obesity, and activity limitations compared to women not caregiving for adult with IDD.

Longitudinal

2014, Vol. 52, No. 2, 147–159

Cross-sectional

Longitudinal

Poorer physical health of adult with ID associated with poorer maternal physical health, lower life satisfaction, and higher burden. Maternal caregivers of adults with Down syndrome have less burden than mothers of adults with other ID, physical health similar between groups.

Cross-sectional

Cross-sectional

Major finding(s) No burnout or health related problems associated with caregiving. Caregiver stress about the future.

Study design Cross-sectional

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES DOI: 10.1352/1934-9556-52.2.147

’AAIDD

159