The organization of services for chronically ill children and their families

Despite a political climate that deters optimism for rapid growth in the field of maternal and child health, we believe that there are reasonable steps that can and ought to be taken in the years immediately ahead. These steps would lead to important and lasting changes in the delivery, organization, and financing of services to chronically ill children and their families. Furthermore, pediatricians can play important roles--as they have historically--in reshaping care for children with special needs. First, children with chronic illness and their families require a set of services substantially different from those required by the majority of the nation's children. Just as there is no escaping the presence of a chronic illness for a child and family, the health care system cannot escape its responsibility to provide these services. This nation has been extraordinarily attentive to the medical services that these children need. Advances in the diagnostic and medical treatment procedures for many chronic illnesses have been remarkable, allowing many children to live far longer and in much better health than anyone would have expected two decades ago. This nation has not been so attentive to other services. A child with diabetes may have the finest medical care available in the region, yet her family lacks the money for gas to visit her in the hospital. The cystic fibrosis specialist may develop a comprehensive management strategy for his patient, but it fails to have full effect because the family's local pediatrician remains uninformed. These and many other examples convince us that the first step toward improving the organization of services for these children and their families must involve sustained national attention to their broad and special needs. Pediatricians are in an excellent position for this effort. Though most pediatricians will not have in their practice many children with the same chronic illness, they are likely to be the only medical practitioners who will get to know a broad spectrum of chronically ill children and their families. Because of this perspective they can be a truly informed and effective voice, articulating to their local communities the need for special services for this population of children. Second, services should be organized in such a way as to de-emphasize dependence on expensive tertiary care hospitals and instead to foster the delivery of care closer to the child's and family's own community.(ABSTRACT TRUNCATED AT 400 WORDS)