Children and youth with special health care needs (CYSHCN) are those at “increased risk for chronic physical, developmental, behavioral, or emotional conditions that require health and related services of a type or amount beyond that required of children generally.”  More than 12 million U.S. children meet this definition. Although only 15-18% of the childhood population, CYSHCN use 80% of the health care dollars spent annually for all children.

CYSHCN and their families have substantial unmet health care needs, and these needs are more similar than different across different health conditions. We know that care can be organized to meet these needs, and that patient outcomes will improve.

This site includes information on the general approach to organizing care (the “medical home”) as well as changes and measures for the care of children with several specific conditions.

The Care Model for Child Health builds on the Chronic Care Model developed by Ed Wagner and his colleagues (see www.improvingchroniccare.org) It emphasizes the central importance of families and children as the primary caregivers; the need for the clinicians to operate as a team and anticipate patient needs; and the role of the community in supporting both. The framework highlights the need for four key components of practice microsystems—a clinical information system, effective decision support, a well designed delivery system emphasizing planned care, and expert support for both family and developmentally appropriate child self management. The model also highlights the key role of organizational leadership, and the importance of linking health services and community resources.