Public Policies Affecting Chronically Ill Children and Their Families. Summary of Findings and Recommendations.

The complex special needs of families with chronically ill children will be best met through the development of regionalized systems of care. A national program is proposed in the context of a generic definition of chronic childhood illness, emphasizing coordinated regional efforts which provide services as close to a child's home as possible. The report analyzes problems and recommends improvements in organization of services, costs and financing, educational and related services, basic research, and training of health professionals. Among detailed recommendations for change in existing programs are the development of regional data systems, individual service plans, and insurance coverage options that permit financing of a broad and continuing range of services. Education-related recommendations include the adoption of more flexible policies regarding qualifying for homebound and hospital instruction. Continuing support for research is seen as a high priority, particularly in genetics, the development of new technologies, epidemiology, and family coping and adjustment. Increased attention to the problems of childhood chronic illness is needed in all health professional schools, emphasizing longitudinal experience with families of chronically ill children, collaboration among disciplines in working with families, and a broad definition of and approach to child and family needs. (JW)