Family-Centered, Community-Based, Coordinated Care for Children With Special Health Care Needs

Abstract

In June 1987, at a conference sponsored by the American Academy of Pediatrics (AAP) and the Bureau of Maternal and Child Health and Resources Development, Department of Health and Human Services, the Surgeon General of the US Public Health Service, C. Everett Koop, MD, ScD, issued a report concerning children with special health care needs. In the report, Dr Koop identified the following seven steps to improve access to care and quality of life for these children: (1) A pledge of a national commitment to all children with special health care needs and their families, (2) encouragement of localities in the building of community-based service systems, (3) assistance in ensuring adequate preparation of providers of care, (4) development of coalitions to improve the delivery of services, (5) establishment of guidelines to control costs of services, (6) encouragement and support of the development of adequate health care financing, and (7) continuation of research and dissemination of information.

Dr Koop also called for the establishment of a national agenda for families and professionals involved in the care of children with special health care needs to work together to improve the lives of these children and their families through a system of family-centered, community-based, coordinated care. In this paper, we will define what is needed to carry out this agenda, discuss some associated problems and solutions, and suggest the role that pediatricians can play.

DEFINITION OF THE NEED

Family-Centered Care

Family-centered care is the focus of philosophy of care in which the pivotal role of the family is recognized and respected in the lives of children with special health needs.