Family support is the support of families with a member with a disability, which may include a child, an adult, or a parent in the family. In the United States, family support includes neighbors, families, and friends; "paid services" through specialist agencies providing an array of services termed "family support services"; school or parent services for special needs such as respite care; specialized child care or peer companions; or cash subsidies, tax deductions or other financial subsidies. Family support has been extended to different population groups in the United States and worldwide. Family support services are a "community services and funding" stream in the United States, with variable "applications" based on disability groups, administrating agencies, and regulatory and legislative intent.
History Respite and family support services developed considerably in the late 1970s and early 1980s, particularly through the demands and initiatives of parents of children with disabilities.Cohen, S. & Warren, R. (1985). Respite care: Principles, programs and policies. Austin, TX: PRO-ED.Taylor, S., Knoll, J., Lehr, S., & Walker, P. (1989). Families for all children: Values-based services for children with disabilities and their families. In: G. Singer & L. Irvin (Eds.), "Support for caregiving families" (pp. 41-53). Baltimore, MD: Paul H. Brookes.Taylor, S., Racino, Julie Ann, Knoll, J. & Lutfiyya, Z. (1987). "The nonrestrictive environment: On community integration for persons with the most severe disabilities." Syracuse, NY: Human Policy Press.Edinger, B., Schultz, B., & Morse, M. (1984). Final report: issues relevant to respite services for people with developmental disability. Part One: The research. In: Racino, Julie Ann (Ed.), "Final report of the Respite Project of Central New York". Syracuse, NY: Respite Project of Central New York, Transitional Living Services and the Syracuse Developmental Services Office. These initiatives occurred throughout the United States concurrent with the formation of activist parent groups in the 1970s, such as those in the state of New Hampshire.Shoultz, B. (1992b). "Like an angel they came to help us: The origins and workings of New Hampshire's family support network." Syracuse, NY: Research and Training Center on Community Integration, Center on Human Policy, Syracuse University. Foster care, which involved "substitute care" from birth families, preceded this organization of parents nationally, and together with group homes, was considered the primary form of community residential services in the US.e.g., Hill, B., Lakin, K.C., Bruininks, R., Amado, A., Anderson, D. & Copher, J.(1989). Living in the community: A comparative study of foster homes and group homes for people with mental retardation. Minneapolis, MN: Center for Residential and Community Services, Institute on Community Integration, University of Minnesota.Provencal, G. (1980). The Macomb-Oakland Regional Center. In: T. Appoloni, J. Cappuccilli, & T. P. Cooke (Eds.), Towards excellence: Achievement in residential services for persons with disabilities. Baltimore, MD: University Park Press.Rucker, L. (1987). A difference you can see: One example of services to persons with severe mental retardation in the community. In: S. Taylor, D. Biklen, & J. Knoll (Eds.), "Community integration for people with severe disabilities". (pp. 109-128). NY, NY: Teachers College Press.Strully, J. & Strully, C.F. (1989). Family support to promote integration. In: S. Stainback, W. Stainback, & M. Forest, Educating All Students in the Mainstream of Regular Education. Baltimore, MD: Paul H. Brookes. By the 1990s, family support had become an established service reported regularly in the field of intellectual and developmental disabilities, and part of the state and local service systems in the US.Braddock, D., Hemp, R., Fujuira, G., Bachelder, L, & Mitchell, D. (1990). State of the states in developmental disabilities. Baltimore, MD: Paul H. Brookes.Knoll, J., Covert, S., Osuch, R., O'Connor, S., Agosta, J. & Blaney, B. (1992). "Family support services in the US: An end of decade status report". Cambridge, MA: Human Services Research Institute. Family support services were considered one of the better ways of supporting families and their children, including "building on natural supports" and encouraging the integration of children in the community.Center on Human Policy. (1987-1989). A statement in support of families and their children. National Policy Institute on Families and their Children. Reprinted in: Racino, Julie Ann. (2000). "Personnel preparation in disability and community life: Toward universal approaches to support." (pp. 31-32). Springfield, IL: Charles C. Thomas Publishers.Taylor, S., Bogdan, R., & Racino, Julie Ann (1991). "Life in the community: Case studies of organizations supporting people with disabilities." Baltimore, MD: Paul H. Brookes. Bersani, H. (1991, January). "Case study of the family support services conducted by the United Cerebral Palsy Association of Philadelphia, PA". Salem, OR: Community Integration Associates (for the Pennsylvania Developmental Disabilities Council).Piersma, J. (2002). Family support services. In: R. Schalock, P.C., Baker, & M.D. Croser (Eds.), "Embarking on a new century: 'Intellectual disabilities' at the end of the 20th century". (pp. 143-152). Washington, DC: American Association on Intellectual and Developmental Disabilities.
Family models and services By the early 1980s, states such as New York had established family support programs and agencies, New York State Office of Mental Retardation and Developmental Disabilities, and "model programs" were identified nationally which served children and their families in the community (e.g., MacComb-Oakland, Michigan, Dane, LaCrosse, and Columbia counties, Wisconsin). New models of family support services were initiated, including professional models which involved both traditional respites for the families (i.e., temporary relief from the stress of caring for children with "special needs") and individual recreation opportunities in generic agencies/sites for the son or daughter (versus traditional in-home babysitting child care).e.g., Racino, Julie Ann (1985a). Respite program models — Use of generic services and family subsidy. In: Racino, Julie Ann. Respite services in New York State. (pp. 27-30). Syracuse, NY: Syracuse University, Maxwell School of International and Public Affairs. Professional parents sought to have respite places available in group homes (e.g., a friend of the home), to develop small group respite settings, to hold parent-to-parent support groups and meetings, to establish councils, and to have cash subsidies to meet the extra expenses of raising a "disabled child" (e.g., Exceptional Family Resources, Syracuse, New York, 1985). By 1983, the State of New York had funded three major demonstration grants,e.g., Racino, Julie Ann (1983). Respite grant awarded. Transitional Living Services News, I(4), 1. and then Governor Mario Cuomo and his wife Matilda held the first Family Support Conference in Albany, New York.Racino, Julie Ann (2000). Personnel preparation in disability and community life: Toward universal approaches to support. Springfield, IL: Charles C. Thomas Publishers. By 1988, New York State reported $16,536,000 in discrete family support initiativesBraddock, D., Hemp, R., Fujuira, G., Bachelder, L, & Mitchell, D. (1990). New York State. "The state of the states in developmental disabilities". (p.336) Baltimore, MD: Paul H. Brookes which did not include new agency family/cash subsidy demonstrations funded later in 1989–1990 in the state or agency cash subsidies included as part of family support demonstration programs (e.g., recreation/respite in generic agencies).Chapter 461, Laws of New York, 1984 and New York State Mental Hygiene Law, Secs. 13.03, 13.04 in Bates, M. V. (1985, July). State family support/cash subsidies programs. Madison, WI: Wisconsin Council on Developmental Disabilities. In the public policy arena, respite was often explored in the context of child care for children with disabilitiesLubeck, S. & Garrett, P. (1988, Spring), "Child care 2000: Policy options for the future. "Social Policy", 31-37.Walker, P. (1999, June). "Child care for children with disabilities: Addressing the unique challenges." Battle Creek, Michigan: The Arc of Calhoun County. and additional expenses of raising a child with a disability as especially critical in low income-families.Lukemeyer, A., Meyers, M. & Smeeding, T. (1997, July). Expensive children in poor families: Out-of-pocket expenditures for the care of disabled and chronically ill children and welfare reform. "Income Security Policy Paper No. 17." Syracuse, NY: Syracuse University, Maxwell School of International and Public Affairs.Bradley, V.J. & Agosta, J. (1985). Tax policy recommendation. "Family care for persons with developmental disability: A growing commitment". Boston, MA: Human Services Research Institute.
Promotion on behalf of families In 1985, Syracuse University's Center on Human Policy was awarded a three-year Community Integration Project from the National Institute on Disability Research and Rehabilitation to work with states and communities in the United States. The project, based on a national search conducted by the Wisconsin Developmental Disabilities Council, identified state cash subsidy programs in 21 states.Bates, M.V. (1985). Table of state family support/cash subsidy programs. Madison, Wisconsin: Wisconsin Developmental Disabilities Council. The project, together with a new national Center on Community Integration, prepared information on family support for distribution, including a news bulletin on family support based on the project's research studies,Shoultz, B. (1987, September). Families for all children. Syracuse, NY: Center on Human Policy, Syracuse University. an article on the case for family support for families,Bradley, V.J. & Agosta, J.M. (1985). Keeping your child at home: The case for family support. Exceptional Parent, 10-22. bibliographic references,e.g., Racino, Julie Ann (1988). Resources on supporting people with extensive health care needs in the community. Syracuse, NY: Center on Human Policy, Rehabilitation Research and Training Center on Community Integration, Syracuse University.Castellani, P., Downey, N.A., Tausig, M.B. & Bird, W.A. (1986). Mental Retardation, 24(2), 71-79.Bersani, H. (1987). Site visit report: Calvert County, Maryland Arc family support services. Syracuse, NY: Center on Human Policy, Rehabilitation Research and Training Center on Community Integration, Syracuse University.Michigan Department of Mental Health. (1983). "Family support subsidy program". Lansing, MI: Author.United Cerebral Palsy Governmental Activities Office. (1987, Summer). "Family Support Bulletin". Washington, DC: Author. innovative agencies and organizations, and an introduction to family support issues, such as family-centered supports, individualized and flexible supports, empowering families, use of natural, community supports, and permanency planning.Walker, P. (1988, July). Resources on family support. Syracuse, NY: Rehabilitation Research and /Training Center on Community Integration, Center on Human Policy, Syracuse University.
Family counseling