Family support

Family support is the support of families with a member with a disability, which may include a child, an adult or even the parent in the family. In the United States, family support includes "unpaid" or "informal" support by 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 US and worldwide. Family support services is currently a "community services and funding" stream in New York and the US which has had variable "application" based on disability group, administrating agency, and even, regulatory and legislative intent.

The late 1970s and early 1980s are considered pivotal times for the development of respite and family support services, particularly through the demands and initiatives of parents of children with disabilities. These initiatives occurred throughout the US concurrent with the formation of activist parent groups in the 1970s, for example, 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 were considered the primary forms of community residential services in the US. However, by the 1990s, family support had become an established service reported regularly in the field of intellectual and developmental disabilities, and part of States' 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.

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 respite for the families (i.e., opportunity for a break 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., 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 the Albany, New York. New York State indeed by 1988 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.

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