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A Family-Centered, Community-Based System of Services for Children and Youth With Special Health Care Needs
James M. Perrin, MD;
Diane Romm, PhD;
Sheila R. Bloom, MS;
Charles J. Homer, MD, MPH;
Karen A. Kuhlthau, PhD;
Carl Cooley, MD;
Paula Duncan, MD;
Richard Roberts, PhD;
Phyllis Sloyer, PhD;
Nora Wells, MA;
Paul Newacheck, DrPH
Arch Pediatr Adolesc Med. 2007;161(10):933-936.
Objective To present a conceptual definition of a family-centered system of services for children and youth with special health care needs (CYSHCN). Previous work by the Maternal and Child Health Bureau to define CYSHCN has had widespread program effects. This article similarly seeks to provide a definition of a system of services.
Design Comprehensive literature review of systems of services and consensus panel organized to review and refine the definition.
Setting Policy research group and advisors at multiple sites.
Participants Policy researchers, content experts on CYSHCN, family representatives, and state program directors.
Outcome Definition of a system of services for CYSHCN.
Results This article defines a system of services for CYSHCN as a family-centered network of community-based services designed to promote the healthy development and well-being of these children and their families. The definition can guide discussion among policy makers, practitioners, state programs, researchers, and families for implementing the "community-based systems of services" contained in Title V of the Social Security Act. Critical characteristics of a system include coordination of child and family services, effective communication among providers and the family, family partnership in care provision, and flexibility.
Conclusions This definition provides a conceptual model that can help measurement development and assessment of how well systems work and achieve their goals. Currently available performance objectives for the provision of care for CYSHCN and national surveys of child health could be modified to assess systems of services in general.
Author Affiliations: From the Center for Child and Adolescent Health Policy, MassGeneral Hospital for Children (Drs Perrin, Romm, and Kuhlthau and Ms Bloom) and Harvard Medical School (Drs Perrin and Kuhlthau), Boston, Massachusetts; National Initiative for Child Healthcare Quality, Boston (Dr Homer); Crotched Mountain Rehabilitation Center, Greenfield, New Hampshire (Dr Cooley); Department of Pediatrics, University of Vermont, Burlington (Dr Duncan); Early Intervention Research Institute, Utah State University, Logan (Dr Roberts); Children's Medical Services, Florida Department of Health, Tallahassee (Dr Sloyer); Family Voices, Boston (Ms Wells); and Institute for Health Policy Studies and Department of Pediatrics, University of California, San Francisco (Dr Newacheck).
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