Family caregivers provide essential care for loved ones, and this care routinely compensates for service gaps in the health and mental health system (Barrio et al., 2016; Burke & Heller, 2017) for the estimated 61 million Americans who have a disability (Okoro et al., 2018; Seligman & Darling, 2017). Past studies estimate the value of family support as more than three times the total $167 billion in Medicaid expenditures for compensated long-term services and supports (Eiken et al., 2018). For the purpose of this announcement, we provide the following definitions. “Family support’’ is defined as a range of formal and informal support, assistance or nurturing provided to a family member with a disability by one or more other family members in response to disability-related needs. These needs may include but are not limited to needs for self-determination, integration, and inclusion in community life. “Family caregiver’’ refers to an individual who provides support, assistance, or nurturing to a family member with a disability. ‘‘Family support services’’ refers to services and cash payments provided to a family caregiver who is providing support, assistance, or nurturing to a family member with disability. “Family member” is defined as any individual related by blood or affinity whose close association with an individual is the equivalent of a family relationship (79 FR 56, 15928-15932; 79 FR 131, 38782-38788).
While the number of Americans with disabilities receiving family support is not known, several factors have dramatically increased the need for support. These factors include the growth in the proportion of the population that is 65 or older, and increased survival and longevity among people with a wide variety of disabilities. The availability of effective family support services (e.g., respite, education; for examples of existing evidence, see Schulz & Eden, 2016; Family Caregiving Alliance, 2019) can help address the growing need for family support among people with disabilities (Rose, Noekler, & Kagan, 2015).
Family caregiving can instill confidence, meaning, and purpose (Roth, Fredman, & Haley, 2015; Pakenham & Cox, 2018). At the same time, providing care and support to loved ones can lead to reduced family resources (Baker & Burton, 2018; Burke, Patton, & Taylor, 2016; Graf, 2017; Zschorn & Shute, 2016; McCall & Starr, 2018; Li, Shaffer, & Bagger, 2015; Brand, Barry, & Gallagher, 2016) and reduced health, well-being, and finances among family caregivers (Selwood et al., 2007; Thompson et al., 2007). Families routinely incur considerable out-of-pocket expenses associated with a family member’s disability (Lewis & Johnson, 2005; Mitra et al., 2009). In turn, these suboptimal caregiver outcomes are associated with poorer outcomes among care recipients with disabilities (Lewallen & Neece, 2015; Bonanno et al., 2015; Mezgebe et al., 2015; Fayed et al., 2015). Despite these established relationships, there is a limited evidence base for services and interventions that can be provided to support families in which people with disabilities and their caregivers live (Magana & Grossman, 2016). This lack of evidence based practices is particularly acute for racial or ethnic minority populations, non-English speaking populations, and understudied caregiver types such as siblings (Grossman & Webb, 2016; ASPE, 2015). Research highlighting ways to provide family support services for those caring for people with disabilities, can identify services that facilitate improved health, well-being, and financial outcomes of caregivers, and ultimately the health and function, employment, and community living outcomes of people with disabilities.
According to a 2016 report, family caregiving is collectively valued at $525 billion a year in the U.S. (National Academies, 2016). There is a critical need for state-of-the-art research to help inform the development of national policies and local services and practices to support families in which people with disabilities and their caregivers live (Heller, Caldwell, & Factor, 2007; Heller, Gibbons, & Fisher, 2015; Drake et al., 2016; AARP, 2018). Under the Older Americans Act (OAA), the National Family Caregiver Support Program (NFCSP) provides grants to states and territories to fund a range of supports that assist family and informal caregivers; the 2016 reauthorization expanded specific populations of caregivers eligible to receive services to include parents caring for children with disabilities (Colello & Napili, 2016; Schulz & Czaja, 2018). However, NFCSP is modest in scope with the appropriation relatively constant for the past decade, at approximately $150 million (ACL, 2019). In 2018, the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act was signed into law. RAISE requires the Secretary of the Department of Health and Human Services to “develop, maintain and update a strategy to recognize and support family caregivers,” and represents a significant step toward examining and improving supports for people with disabilities and family caregivers (RAISE, 2018). Given this important context, the purpose of this RRTC will be to engage in research, data analysis, training, knowledge translation, and development and dissemination of research-based informational products to improve services and well-being for families in which people with disabilities and their caregivers live.
Assistant Secretary for Planning and Evaluation. (2015). Survey for Caregivers Supporting a Person with a Disability Outside of the Disability Support Service System. Retrieved from https://aspe.hhs.gov/basic-report/survey-caregivers-supporting-person-d…
AARP. (2018). Across the States: Profiles of Long-term Services and Supports. Retrieved from https://www.aarp.org/content/dam/aarp/ppi/2018/08/across-the-states-pro…
Administration for Community Living. (2019). National Family Caregiver Support Programs. Retrieved from https://acl.gov/programs/support-caregivers/national-family-caregiver-s…
Baker, R. S., & Burton, L. M. (2018). Between a Rock and a Hard Place: Socioeconomic (Im)Mobility Among Low-Income Mothers of Children with Disabilities. In Marginalized Mothers, Mothering from the Margins (pp. 57-72). Emerald Publishing Limited.
Barrio, C., Hernandez, M., & Gaona, L. (2016). The family caregiving context among adults with disabilities: A review of the research on developmental disabilities, serious mental illness, and traumatic brain injury. Journal of Family Social Work, 19(4), 328-347.
Bonanno, G. A., Romero, S. A., & Klein, S. I. (2015). The temporal elements of psychological resilience: An integrative framework for the study of individuals, families, and communities. Psychological Inquiry, 26(2), 139-169.
Brand, C., Barry, L., & Gallagher, S. (2016). Social support mediates the association between benefit finding and quality of life in caregivers. Journal of Health Psychology, 21(6), 1126-1136.
Burke, M. M., & Heller, T. (2017). Disparities in unmet service needs among adults with intellectual and other developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 30(5), 898-910.
Burke, M. M., Patton, K. A., & Taylor, J. L. (2016). Family support: A review of the literature on families of adolescents with disabilities. Journal of Family Social Work, 19(4), 252-285.
Colello, K. J., & Napili, A. (2016). Older Americans Act: Background and Overview. Congressional Research Service.
Drake, R. E., Bond, G. R., Goldman, H. H., Hogan, M. F., & Karakus, M. (2016). Individual placement and support services boost employment for people with serious mental illnesses, but funding is lacking. Health Affairs, 35(6), 1098-1105.
Eiken, S., Sredl, K., Burwell, B., & Amos, A., (2018). Medicaid Expenditures for Long-Term Services and Supports in FY 2016. Retrieved from https://www.medicaid.gov/medicaid/ltss/downloads/reports-and-evaluation…
Family Caregiving Alliance. (2019). Evidence-based Family Caregiving Practices and Programs. Retrieved from https://www.caregiver.org/special-topics/evidence-based-practices
Fayed, N., Davis, A. M., Streiner, D. L., Rosenbaum, P. L., Cunningham, C. E., Lach, L. M., ... & Rafay, M. F. (2015). Children's perspective of quality of life in epilepsy. Neurology, 84(18), 1830-1837.
Graf, N. M. (2017). Family Adaptation Across Cultures Toward a Loved One Who Is Disabled. The Psychological and Social Impact of Illness and Disability, 201.
Grossman, B. R., & Webb, C. E. (2016). Family support in late life: A review of the literature on aging, disability, and family caregiving. Journal of Family Social Work, 19(4), 348-395.
Heller, T., Caldwell, J., & Factor, A. (2007). Aging family caregivers: Policies and practices. Mental Retardation and Developmental Disabilities Research Reviews, 13(2), 136-142.
Heller, T., Gibbons, H. M., & Fisher, D. (2015). Caregiving and family support interventions: Crossing networks of aging and developmental disabilities. Intellectual and Developmental Disabilities, 53(5), 329-345.
Lewallen, A. C., & Neece, C. L. (2015). Improved social skills in children with developmental delays after parent participation in MBSR: The role of parent–child relational factors. Journal of Child and Family Studies, 24(10), 3117-3129.
Lewis, D., & Johnson, D. (2005). Costs of family care for individuals with disabilities. In R. Stancliffe & K. Lakin (Eds.), Costs and outcomes of community services for people with intellectual disabilities (pp. 63–89). Baltimore: Paul H. Brookes.
Li, A., Shaffer, J., & Bagger, J. (2015). The psychological well-being of disability caregivers: Examining the roles of family strain, family-to-work conflict, and perceived supervisor support. Journal of Occupational Health Psychology, 20(1), 40.
Magaña, S. & Grossman, B.R. (Eds.). (2016). Family support of persons with disabilities across the life course [Special issue]. Journal of Family Social Work, 19(4).
McCall, B. P., & Starr, E. M. (2018). Effects of autism spectrum disorder on parental employment in the United States: evidence from the National Health Interview Survey. Community, Work & Family, 21(4), 367-392.
Mezgebe, M., Akhtar-Danesh, G. G., Streiner, D. L., Fayed, N., Rosenbaum, P. L., & Ronen, G. M. (2015). Quality of life in children with epilepsy: How does it compare with the quality of life in typical children and children with cerebral palsy? Epilepsy & Behavior, 52, 239-243.
Mitra, S., Findley, P., & Sambamoorthi, U. (2009). Health care expenses of living with a disability: Total expenditures, out-of-pocket expenses, and burden. Archives of Physical Medicine and Rehabilitation, 90, 1532–1540.
National Academies of Sciences, Engineering, and Medicine (NASEM). (2016). Families Caring for an Aging America. National Academies Press.
Okoro, C.A., Hollis, N.D., Cyrus, A.C., & Griffin-Blake, S. (2018). Prevalence of Disabilities and Health Care Access by Disability Status and Type Among Adults – United States, 2018. Morbidity and Mortality Weekly Report, 67(32), 882.
Pakenham, K. I., & Cox, S. (2018). Effects of Benefit Finding, Social Support and Caregiving on Youth Adjustment in a Parental Illness Context. Journal of Child and Family Studies, 1-16.
Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, Public Law No: 115-119 (2018).
Rose, M. S., Noelker, L. S., & Kagan, J. (2015). Improving policies for caregiver respite services. The Gerontologist, 55(2), 302-308.
Roth, D. L., Fredman, L., & Haley, W. E. (2015). Informal caregiving and its impact on health: A reappraisal from population-based studies. The Gerontologist, 55(2), 309-319.
Schulz, R., & Czaja, S. J. (2018). Family caregiving: a vision for the future. The American Journal of Geriatric Psychiatry, 26(3), 358-363.
Schulz, R., Eden, J., & National Academies of Sciences, Engineering, and Medicine. (2016). Programs and supports for family caregivers of older adults. In Families Caring for an Aging America. National Academies Press (US).
Seligman, M., & Darling, R. B. (2017). Ordinary families, special children: A systems approach to childhood disability. Guilford Publications.
Selwood, A., Johnston, K., Katona, C., Lyketsos, C., & Livingston, G. (2007). Systematic review of the effect of psychological interventions on family caregivers of people with dementia. Journal of Affective Disorders, 101(1-3), 75-89.
Thompson, C. A., Spilsbury, K., Hall, J., Birks, Y., Barnes, C., & Adamson, J. (2007). Systematic review of information and support interventions for caregivers of people with dementia. BMC Geriatrics, 7(1), 18.
Zschorn, M., & Shute, R. (2016). ‘We are dealing with it the best we can’: Exploring parents’ attributions regarding their child’s physical disability using the ‘Four Ws’ framework. Clinical Child Psychology and Psychiatry, 21(3), 416-431.
Priority--RRTC on Family Support
The Administrator of the Administration for Community Living (ACL) establishes a priority for a Rehabilitation Research and Training Center (RRTC) on Family Support.
Research under this RRTC must aim to develop a strong evidence base for family support services that (1) are person- and family-centered, (2) promote choice and control of the person with a disability, and (3) are sustainable in the community. The RRTC must be designed to contribute to improved outcomes among people with disabilities and their family caregivers by:
(a) Conducting research activities in at least two of the following priority areas, focusing on outcomes of people with disabilities and their family caregivers:
(i) Individual and environmental factors associated with positive outcomes for families that are not typically the focus of caregiving research. These families include but are not limited to those with understudied caregiver types (e.g., fathers, grandparents, siblings, aunts and uncles); those with limited access to family support services (e.g., those living in poverty, in rural areas or in resource deficient environments); and those from racial or ethnic minority backgrounds.
(ii) Developing and/or testing family support services.
(iii) Testing the efficacy of State- and local-level promising practices for delivering family support services that could be adopted in other States or jurisdictions.
(b) Focusing its research on one or more specific stages of research. At least one project must be conducted in the “intervention efficacy” or the “scale-up evaluation” stages of research – focusing on family support services delivered to families in which people with disabilities and their caregivers live. Any research projects proposed under this requirement must collect outcome data on people with disabilities and their family caregivers. An “intervention efficacy” project must test the efficacy of new or existing family support services. A “scale-up evaluation” project must further test existing evidence-based family support services among different target populations of people with disabilities and their caregivers – or test those interventions in new circumstances or settings. If the RRTC is to conduct research that can be categorized under more than one of the research stages, or research that progresses from one stage to another, those stages must be clearly specified. These research stages and their definitions are provided in this notice;
(c) Identifying and involving key stakeholders in the research and research planning activities to maximize the relevance and usefulness of the research products being developed. Stakeholders must include, but are not limited to, a diverse group of people with disabilities and their family caregivers, including those who have not been studied previously (e.g., see examples of categories defined under part a ); national, State and local-level policymakers; service providers; and relevant researchers in the field of disability and rehabilitation research;
(d) Establishing and maintaining a network of technical assistance providers and advocacy entities to assist in synthesizing and disseminating research-based information related to family support services, policies, programs and practices for families in which people with disabilities and their caregivers live. Network members should include, but are not limited to: the Aging and Disability Resource Centers, State Councils on Developmental Disabilities; Parent Training and Information Centers; Protection and Advocacy Client Assistance Programs; Centers for Independent Living, and private sector organizations that are recognized as national leaders in promoting family support services, policies, programs and research; and
(e) Serving as a national resource center related to family support by—
(i) Providing information and technical assistance on family support services to people with disabilities, family caregivers, family support service providers, policymakers, and other key stakeholders; and
(ii) Providing training to people with disabilities, family caregivers, family support service providers, and other key stakeholders. This training must be designed to facilitate understanding and provision of evidence-based family support services, and may be delivered at the graduate, preservice, and in-service levels. This training may be provided through conferences, workshops, public education programs, in-service training programs, and similar activities.
(iii) Providing training to doctoral students and post-doctoral fellows to build relevant, specialized family support research capacity among the next generation of disability researchers.
General Rehabilitation Research and Training Center Requirements
The effectiveness of any RRTC depends on, among other things, how well the RRTC coordinates its research efforts with the research of other NIDILRR-funded projects, and involves individuals with disabilities in its activities. Accordingly, the RRTC must:
(a) Coordinate on research projects of mutual interest with relevant NIDILRR-funded projects as identified by the NIDILRR Project Officer.
(b) Involve people with disabilities, including individuals with disabilities from minority backgrounds, in planning and implementing its research, training, and dissemination activities, and in evaluating the RRTC.
(c) Coordinate with the appropriate NIDILRR-funded Knowledge Translation Centers and professional and consumer organizations to provide scientific results and information to policymakers, service providers, researchers, and others, including employers, vocational rehabilitation providers, and independent living centers.
Definitions - Stages of Research:
Exploration and discovery means the stage of research that generates hypotheses or theories through new and refined analyses of data, producing observational findings and creating other sources of research-based information. This research stage may include identifying or describing the barriers to and facilitators of improved outcomes of individuals with disabilities, as well as identifying or describing existing practices, programs, or policies that are associated with important aspects of the lives of individuals with disabilities. Results achieved under this stage of research may inform the development of interventions or lead to evaluations of interventions or policies. The results of the exploration and discovery stage of research may also be used to inform decisions or priorities.
Intervention development means the stage of research that focuses on generating and testing interventions that have the potential to improve outcomes for individuals with disabilities. Intervention development involves determining the active components of possible interventions, developing measures that would be required to illustrate outcomes, specifying target populations, conducting field tests, and assessing the feasibility of conducting a well-designed intervention study. Results from this stage of research may be used to inform the design of a study to test the efficacy of an intervention.
Intervention efficacy means the stage of research during which a project evaluates and tests whether an intervention is feasible, practical, and has the potential to yield positive outcomes for individuals with disabilities. Efficacy research may assess the strength of the relationships between an intervention and outcomes and may identify factors or individual characteristics that affect the relationship between the intervention and outcomes. Efficacy research can inform decisions about whether there is sufficient evidence to support “scaling-up” an intervention to other sites and contexts. This stage of research may include assessing the training needed for wide-scale implementation of the intervention and approaches to evaluation of the intervention in real-world applications.
Scale-up evaluation means the stage of research during which a project analyzes whether an intervention is effective in producing improved outcomes for individuals with disabilities when implemented in a real-world setting. During this stage of research, a project tests the outcomes of an evidence-based intervention in different settings. The project examines the challenges to successful replication of the intervention and the circumstances and activities that contribute to successful adoption of the intervention in real-world settings. This stage of research may also include well-designed studies of an intervention that has been widely adopted in practice, but lacks a sufficient evidence base to demonstrate its effectiveness.