Delivery of care for severely retarded children: a follow-up study

The study progress in the move from institutional toward community care a study was made of all children below 16 years of age for whom application for residential care had been made between 1970 and 1974. These children were followed-up in 1975 to (1) compare services needed with services obtained for those residing in hospitals compared to those living in the community, and (2) ascertain factors determining placement. Among those who applied, level of functioning was associated to a greater extent with age than degree of retardation. Two thirds of the youngest group was non-ambulant, at age 11-15 only 5% were still non-ambulant. Similar improvements with age occured in speech development and ability to follow simple instructions. Children living in the community in 1975 failed to obtain needed services more than those institutionalized although both groups did not differ in regard to service needs. Especially scarce for parents of children living at home at follow-up were supportive services as counselling for parents, home-maker or baby sitters needed by most. It was expected that placement would be related to level of functioning of the retarded, behavior problems, proportion of broken families. Yet no relationship was found between these variables and placement. Placement was determined solely by social class and ethnic background of the patients. In contrast to an earlier study more parents came from ethnic minorities and the lower classes. These parents may be more tolerant, more accepting of having a retarded child that middle class parents. Progress was noted in the proportion of retarded placed into the community and regionalization.