A family-centered, community-based system of services for children and youth with special health care needs.
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.


METHODS
Comprehensive literature review of systems of services and consensus panel organized to review and refine the definition.


METHODS
Policy research group and advisors at multiple sites.


METHODS
Policy researchers, content experts on CYSHCN, family representatives, and state program directors.


RESULTS
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.
Perrin
James M
JM
Center for Child and Adolescent Health Policy, MassGeneral Hospital for Children, and Harvard Medical School, Boston, MA 02114, USA. jperrin@partners.org
Romm
Diane
D
Bloom
Sheila R
SR
Homer
Charles J
CJ
Kuhlthau
Karen A
KA
Cooley
Carl
C
Duncan
Paula
P
Roberts
Richard
R
Sloyer
Phyllis
P
Wells
Nora
N
Newacheck
Paul
P
D000293:Adolescent; D000328:Adult; D000367:Age Factors; D002648:Child; D018672:Community Health Planning; D003153:Community Health Services / Q000458:organization & administration*; D019058:Community Networks; D019988:Children with Disabilities / Q000534:rehabilitation*; D006291:Health Policy; D006293:Health Promotion; D006301:Health Services Needs and Demand; D006801:Humans; D017146:Models, Organizational; D018802:Patient-Centered Care / Q000458:organization & administration*; D011368:Professional-Family Relations