Health care financing for severe developmental disabilities

The 1985-86 data from 308 children and young adults under age 25 with autism and from 326 with severe or profound mental retardation can be compared to national data from the 1980 MNCUES and the 1987 NMES because the methods are similar. These data provide detailed answers to the questions, what health care services are used? what are the expenses? Who pays them? Until now, the absence of comprehensive national data had hindered the development of new approaches to financing the care of children with serious, lifelong conditions. These data permit policymakers to take into account the needs and expenditures for severely developmentally disabled children when reforming the health care financing system. None of the children or young adults had expenditures in excess of $50,000, and very few reached the upper $20,000s. For children with autism the average annual health care expenditure was about $1,000 and about $1,700 for young adults, compared to the $414 average for all American children. They received an average of four physician visits annually, slightly above the U.S. average for children. Their hospitalization rate was twice the average for children. Hospitalization accounted for one-third the health care expenditures among children with autism, but for two-thirds among young adults. For children and young adults with severe retardation the average expenditure on health care was about $4,000, due to the physical impairments in two thirds of the children. They averaged about 12 physician visits annually, falling to 8 among young adults. Children were hospitalized about eight times the national rate, and young adults about twice. Among severely retarded children and young adults living at home, hospitalization accounted for over half the health care expenses, but for only one third for those in residential placement. Unfortunately, preventive and habilitative services were but a tiny fraction of health care expenditures and were demonstrably underutilized. Only 60% of these children had routine dental examinations within the last 12 months, a worse record than the average child. For the individuals whose primary physicians judged that they would benefit from physical or speech therapy, less than one quarter were receiving them. Care for seriously, chronically disabled children places great burdens on immediate family members. Only 20% of the severely retarded youngsters from age 10 to 24 could be left alone at home, even for a few minutes, and only 30% of the autistic ones. These developmental disabilities create needs for personal care and family support that traditionally have not been considered health services.(ABSTRACT TRUNCATED AT 400 WORDS)