NASHP and States Develop National Care Coordination Standards for Children with Special Health Care Needs

Care coordination has long been a core component of state efforts to improve health outcomes, reduce caregiver and patient burden, decrease health care costs, and strengthen systems of care for children and adults with chronic and complex conditions.  

The National Academy for State Health Policy (NASHP), with support from the Lucile Packard Foundation for Children’s Health, is developing National Care Coordination Standards for Children and Youth with Special Health Care Needs (CYSHCN).  These voluntary standards are designed to help states develop robust, high-quality care coordination programs for children with chronic and complex conditions. 

NASHP’s work to develop care coordination standards is shaped by key informant interviews, a comprehensive literature review of evidence-based child and adult models, and a National Care Coordination Standards National Work Group comprised of representatives from state Medicaid agencies and public health programs, health services researchers, health plans, families of CYSHCN, federal agency representatives, and others.  

States typically place greater focus on care coordination models for adults as compared with children. That trend, however, is changing as a result of state efforts to integrate health care delivery systems for Medicaid-eligible pediatric and adult populations. Federal rules such as the Medicaid Managed Care Final Rule and new investments including the Centers for Medicare & Medicaid Services, Center for Medicare & Medicaid Innovation Integrated Care for Kids model underscore the critical role of care coordination. 

Despite widespread recognition about the importance of care coordination for families of CYSHCN, its use varies across the country and is often not well aligned with need. Nearly one-third of families of CYSHCN report that they have not received care coordination services. 

On the other hand, many families of children with medical complexity often report an abundance of care coordinators from varying health and social support systems, to the point they reporting having to “‘coordinate the care coordinators.” Furthermore, many states report common challenges in providing care coordination services to CSYHCN and have asked for guidance and resources to help their work. 

These challenges include the need to identify the unique needs of CYSHCN, involve families in care coordination design and delivery, measure the quality of care coordination services, provide training to the care coordination workforce, and determine adequate payment for care coordination.

The benefits of providing care coordination to CYSHCN and their families are widely recognized.  Care coordination programs have been shown to reduce emergency department visits and hospitalizations, decrease costs, avoid delivery of fragmented and duplicative care, improve family well-being, and reduce unmet needs. When provided effective care coordination, families of CYSHCN also report lower financial burden, less impact on their employment, and fewer school absences.  In particular, children with medical complexity experience significant benefits from a team-based approach to care coordination, particularly when there is close collaboration with community partners in other sectors.

In the coming months, NASHP will convene the national work group to guide development of the National Care Coordination Standards for CYSHCN and achieve a consensus on the focus and content of the standards. The standards will be finalized and disseminated nationally in spring 2020.

For more information about the National Care Coordination Standards for CYSHCN, please contact Karen VanLandeghem, NASHP senior program director, or Kate Honsberger, NASHP senior policy associate,