Pediatric Nursing Homes: Implications of the Massachusetts Experience for Residential Care of Multiply Handicapped Children

Pediatric nursing homes were established in Massachusetts in 1971, in response to the crisis created by the deinstitutionalization of children with multiple severe handicaps for whom care in the community was unrealistic. Although these residential beds provided short-term relief for the system, failure both to plan for the improved long-term survival of the children and to develop alternative community services for those whose functional and medical status changed has left fundamental problems unresolved. A review of the 421 residents of pediatric nursing homes since 1972 shows that most have been bedridden and nonverbal, requiring provision of basic care: feeding, dressing, maintaining hygiene, and sensory and motor stimulation. Three quarters of the residents were severely or profoundly retarded and had seizures. About 4 per cent died each year, and another 5 per cent were discharged; few beds were available for new admissions. Low standards of care and financial disincentives have resulted in less than optimal educational and rehabilitative services. Other states are facing similar problems, which can be resolved only through better funding and coordination of the relevant state agencies. (N Engl J Med 1983; 309: 640–6).