Respite care is one of a range of support services typically available to carers of people with dependencies who need a break from caring, and the factors that influence the need for respite care are generally similar irrespective of the nature of the dependencies. Hence, the expectations of families potentially have policy and service provision…

Historically, intervention programmes in intellectual and developmental disabilities have targeted the individual's special needs independent of the family and environmental context. This trend has been changing over the past two decades. This paper presents a literature review on changing trends in family support and the development of family…

There has been a gradual shift from a deficit to a support model for understanding disability over the last two decades. Although more attention is focused on supports at the individual level, policy has provided for the provision of family support. Despite this policy, families' needs for support are on the rise; and research suggests that…

Public Law 99-457 extended the landmark Public Law 94-142 legislation to include early intervention for infants and toddlers with or at-risk for development of developmental disabilities. Currently over 300,000 infants and toddlers and their families in the United States receive services through Part C of the Individuals with Disabilities…

This article examines results from a consumer and caregiver-directed care pilot program for families with adults with developmental disabilities. Surveys were administered to 50 caregivers and three project coordinators, and focus groups were conducted with 44 individuals, including caregivers, consumers, and support coordinators. Significant pre-…

A family-centered approach to the support of families with a young child with an intellectual or developmental disability has been widely adopted in the last decade. While some of the foundational assumptions of family-centered theory have been tested, there remain considerable gaps in the research evidence for this approach. While parenting…

Longitudinal impacts of a consumer-directed support program that provides families with an individualized budget were studied at three points in time over a 9-year period: Time 1 (1991), Time 2 (1995), and Time 3 (2000). At Time 3, families in the program were also compared with families on the waiting list. Over time, families in the program…

This article reviews federal policy affecting families who have children or adult members with disabilities, particularly but not exclusively developmental disabilities. It reviews the federal statutes and family-and-disability related decisions of the U.S. Supreme Court and the other courts. It then reviews the research on current family support…

The report presents findings from a study of family-based care for persons with developmental disabilities. The first of four parts introduces the problems of family-based care and presents perspectives of parents and of persons with developmental disabilities. Part 2, on responding to the needs of families, includes a review of historical and…

Partners in Policymaking is an ongoing, federally funded empowerment and self-advocacy education program for individuals with developmental disabilities and their families in Minnesota which is being replicated in other states. A survey of 130 program graduates indicated satisfaction with the program and the presence of many active citizen…

This site visit report describes activities, strengths, and challenges of the Area Agency for Developmental Services in Region VI of New Hampshire, with an emphasis on bringing people with developmental disabilities out of the state institution to community-based services. The agency provides case management services, family support services, and…

The conceptualization of individual quality of life is reasonably well established, and now family quality of life and intellectual disability is emerging as an important field of study. This article examines comparative family quality of life in three types of families: those with a child who has Down syndrome, those with a child with autism, and…

This qualitative study of 32 low-income families with infants or toddlers with developmental delays or disabilities (a) examines whether participation in one Early Head Start (EHS) program increased the likelihood that the families would pursue early intervention services, (b) identifies the phases through which the EHS families progressed in…

This review examines later life family support for adults with developmental disabilities from a life course perspective that takes into account social trends and changes in service patterns and in attitudes of families. Key issues addressed include: (1) trends affecting family caregiving, (2) health and social outcomes of life-long caregiving,…

This site visit report describes the development and activities of the New Hampshire Family Support Network for families of people with developmental disabilities, and is based on a review of documents, interviews with key people, and participant observation. It begins with a brief history of family activism in New Hampshire, noting the early high…