Building a system of care for children with special healthcare needs

This article describes current efforts to (a) define best practices and desired systems-level outcomes for a system of care for Children with Special Health Care Needs (CSHCN) and their families; (b) describe the interconnections between Part C early intervention programs and those for CSHCN; and (c) develop measuring and monitoring strategies for implementing a state-level system for all CSHCN. The importance of working in partnership with states and family representatives with respect to defining, measuring, and monitoring progress toward a system of care will be illustrated through a description of a federally funded Participatory Action Research project. Results of the project include the development of national indicators for the 6 performance measures to guide states in their efforts to achieve a system of care.