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Children with Special Healthcare Needs

National Context & Population


Lisa Simpson, M.B., B.Ch., M.P.H., Deputy Director, Agency for Healthcare Research and Quality (AHRQ), Rockville, MD.

Gloria Weissman, M.A., Deputy Director, Division of Services for Children with Special Health Needs, Maternal and Child Health Bureau (MCHB), Health Resources and Services Administration, Rockville, MD.

Lisa Simpson of the Agency for Healthcare Research and Quality (AHRQ) presented a broad overview of the national context for Children with Special Healthcare Needs (CSHCN).

Highlighting insurance trends, policy developments, SCHIP implementation, and other issues including medical necessity and racial and ethnic health disparities, Dr. Simpson emphasized that the impact of the shift toward managed care on this population is a significant factor in the delivery of services to CSHCN, and she discussed various activities that have implications for CSHCN, including:

  • The National Health Law Foundation Study focusing on patient protections.
  • Changes in State regulations to improve access to care for CSHCN.
  • The changing role of the court systems to handle benefits issues.
  • AHRQ re-authorization to focus on areas of quality improvement and children.

Gloria Weissman of the Maternal and Child Health Bureau provided an overview of the Health Resources and Services Administration's (HRSA) role in the area of CSHCN. Current projects include the development of definitional criteria for CSHCN and the conduct of a national survey to collect high-quality prevalence data on the CSHCN population.

This initiative is being developed in conjunction with the National Center for Health Statistics (NCHS) as a part of NCHS' State and Local Area Integrated Networks (SLAITS) telephone survey. The survey will provide baseline estimates for Federal and State performance measures, the Healthy People 2010 national prevention objectives, and data for each State's Title V needs assessment.

The survey will be conducted in two parts, starting in July 2000.


Simpson L, Fraser I. Children and Managed Care: What Research Can, Can't, and Should Tell Us about Impact. Med Care Res Rev 1999;56(Supp.2):13-37.

American Academy of Pediatrics Committee on Children with Disabilities. Managed Care and Children with Special Health Care Needs. Pediatrics 1998;102(3):657-60.

Shatin D, Levin R, Ireys HT, Haller V. Health Care Utilization by Children With Chronic Illnesses: A Comparison of Medicaid and Employer-insured Managed Care. Pediatrics 1998;102(4):1178-86.

McPherson M, Arango P, Fox H, et al. A New Definition of Children With Special Health Care Needs. Pediatrics 1998;102(1):137-40.

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