Children With Special Health Needs: A United States Perspective

Abstract

Several themes run through this consideration of children with special health needs and their families. First, US programs tend to be fragmented in the sense that many geographic areas lack adequate services, and only partial types of family support and treatment services are available despite the relative breadth of family needs. Programs tend to be focused in the sense of separating children based on the specific health condition that they have, despite the similarity of issues for their families that cross diseases. This approach provides focused attention to high quality and high technology medical and surgical care and may lead to better physiologic outcomes, but it lessens attention to the issues that may help the child function effectively in society and grow into a participating young adult. For teenagers, focus on pregnancy prevention may take attention away from other pressing problems, such as substance abuse or sexually transmitted diseases. Hearing screening for school-aged children may take place isolated from intervention programs or from broader preventive health efforts. In Europe, the whole is more than the sum of its parts and the commitment to community-based preventive care assures children and families access to a wide array of preventive efforts. Second, the political will in the US emphasizes freedom of personal choice and individual and family responsibility. This issue of free choice is tempered by restrictions on access to contraceptive education and services for teenagers. But, in general, it limits public support for families with children with special health needs, emphasizing instead the family's responsibility to seek services and provide care, whether for the prevention or management of adolescent pregnancy or for the home and community management of children with complex physical health needs. Programs reflect the belief that families should meet their own needs. In Europe, in distinction, the social contract assumes that families with children with special health needs require additional resources from the community and fosters a broad base of financial support for families. Some conclusions may be drawn about the population of children with special health needs. First, insurance alone will not meet their needs. Other structures (with adequate funding) are needed to insure the development of systems of care, the availability of adequate preventive services, the development and maintenance of regionalized programs where necessary, and the assurance of quality. Second, prevention is relevant for all of these issues of children with special health needs, the prevention of adolescent pregnancy, the prevention of handicap for children with disabilities, or the prevention of dysfunction from a hearing impairment. Much prevention can be carried out at a community level. A broad-based effort reflecting community needs is preferable to fragmented prevention programs for specific issues. Third, a broad notion of children with special health needs is required, rather than a focused campaign on narrow problems. Families' reports of issues in raising children with diverse chronic illnesses and developmental disabilities reflect many similar problems: financing, respite care, physical burdens of care, lack of coordination of services, and limited access to many needed services. Fourth, regulation and regionalization may be necessary to assure access to appropriate services for all children with special health needs. Public planning and regulation are concepts that have been anathema in health policy in the last several years, yet they may be necessary to assure adequate services in all parts of the country.