On the importance of helping families: policy implications from a national study

This study is a companion to our 4-year study (Birenbaum, Guyot, & Cohen, 1990) on financing health care for individuals with autism or severe mental retardation. We reported on nonmedical expenditures and opportunity costs pertaining to maintaining a child or young adult with serious developmental disabilities in the home or in residential care and discussed policy implications for assisting their families. We proposed that (a) personal care and family support should be included in health care requirements, (b) family-centered care should be promoted, (c) appropriate programs and care should be provided for young adults no longer in school, (d) financing and organizing of family supports and subsidies should be administratively simple, (e) Medicaid should be expanded to increase use of home- and community-based services, and (f) financial support should be provided to families.