A New Definition of Children with Special Health Care Needs

McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck PW, Perrin JM, Shonkoff JP, Strickland B. A new definition of children with special health care needs. Pediatrics. 1998 Jul;102(1 Pt 1):137-40. PubMed PMID: 9714637.

Developing community systems of services for children with special health care needs represents a significant challenge for pediatricians, families, managed care organizations, and public and private agencies providing services to this population. At the state level, Maternal and Child Health (MCH) and Children With Special Health Care Needs (CSHCN) programs are vested with the responsibility for planning and developing systems of care for all children with special health care needs. Historically, these programs have been supported through Title V of the Social Security Act, with state-matching funds, to provide health services to selected groups of children with special needs, typically those with complex physical conditions. However, during the last half-century, service systems have become increasingly complex as a result of health, education, and social policy changes, as well as changes in the epidemiology of child health, including increases in the number and proportion of children with chronic conditions and disabilities and changes in their case-mix.1-4 These changes have resulted in gaps in some service areas and duplication in other areas, as well as fragmentation in the way service systems are organized.5

Recognizing these difficulties, health policy leaders at the state and federal levels, with broad input from public and private agencies, providers, and families, effected legislative changes in the federal Omnibus Budget Reconciliation Act of 1989, which expanded the mission of CSHCN programs to facilitate the development of community-based systems of services for children with special health care needs and their families. Since then, the explosive growth of managed care has presented new challenges and opportunities as well as a heightened urgency for the development of systems of care that integrate health and related services for this population.

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