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National Care Coordination Standards for Children and Youth with Special Health Care Needs

Organization: National Academy for State Health Policy

Primary Contact: Karen VanLandeghem

Grant Amount: $286,759 for 18 months

Date Awarded:


Currently there are no widely accepted national care coordination standards for children with complex conditions. A grant to the National Academy for State Health Policy will launch a process to develop such standards, beginning with a literature review, key informant interviews, and convening of a National Work Group to generate and refine standards.


An in-depth, data driven process was undertaken to develop National Care Coordination Standards for children with complex medical conditions. The Care Coordination Standards were released in October of 2020 with more than 7,000 downloads of the materials in the first month of release. An accompanying blog, national webinar, and conference session were produced to disseminate the Care Coordination Standards. A next phase of work includes the writing of a journal article on the Standards, as well as the development of implementation tools that cover key issues, including quality measurement and financing.

Related Resources

The National Care Coordination Standards for Children and Youth with Special Health Care Needs (CYSHCN) outline the core, system-level components of high-quality care coordination for CYSHCN. These standards are designed to help state officials and other stakeholders develop and strengthen high-quality care coordination for children with the goal of identifying and assessing the need for care coordination, engaging families in the care coordination process, building a strong and supportive care coordination workforce, and developing team-based communication processes to better serve children and families.

This brief describes key considerations and challenges in care coordination quality measurement and identifies sample metrics that could be leveraged to evaluate the quality of care coordination systems.

There are a variety of approaches that states can use to finance care coordination services for CYSHCN through Medicaid. Financing of care coordination is critical to the quality and sustainability of these services. This brief highlights key components and themes across five states’ approaches to financing care coordination.