Lably
Skip to content

Family support

Support for relatives of disabled people

  • 18 min read
  • 8 chapters

Related on Lably

Through Disability, Special needs and Tax deduction

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. 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. 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. 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. 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.

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). 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, and then Governor Mario Cuomo and his wife Matilda held the first Family Support Conference in Albany, New York. By 1988, New York State reported $16,536,000 in discrete family support initiatives 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). In the public policy arena, respite was often explored in the context of child care for children with disabilities and additional expenses of raising a child with a disability as especially critical in low income-families.

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. 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, an article on the case for family support for families, bibliographic references, 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.

Sign in to keep reading

7 more chapters are free with a Lably account.

More in Sociology