The project sought to determine the content and form of materials that would enable parents of children with disabilities to become informed critical consumers of respite services. Project activities included establishment and utilization of a national advisory panel; an indepth review of the literature on family supports, systems change, and…

This paper profiles nine model programs for supporting families who care for a child with a severe illness or one or more disabilities and discusses current trends as they emerged from interviews with key persons in the field. Core components examined include self-help, advocacy, parent education, respite care, family-centered case management, and…