Preventing the Institutionalization of Developmentally Disabled Persons

In order to determine what support services may prevent or delay institutionalization of developmentally disabled (DD) children, 128 families with DD children under age 5 and living at home were interviewed concerning currently received and recommended support services. In addition, 52 families with institutionalized DD children (of all ages) completed a questionnaire focusing on major reasons for placement and services that, had they been available, may have prevented institutionalization. The majority of parents with DD children living at home reported satisfaction with support services received and 95% had no immediate plans to place their child outside the home. Essential support services cited by parents included infant screening and diagnosis, early intervention (for children below age 3), day programming, and a parent support system. Sixty percent of parents who placed their DD children outside the home indicated that no additional support services would have prevented or delayed such placement. The three major reasons for placement (in order of frequency) were physical size of child, behavior problems, and adverse effect on family or other siblings. The need for support services directed toward family members and toward older DD children was cited. (JW)