Host Organizations: Duke University and University of North Carolina at Chapel Hill

Pediatricians from Duke University and the University of North Carolina at Chapel Hill, in partnership with Title V representatives in the North Carolina (NC) Department of Health and Human Services, Legal Aid of North Carolina, and community-based organizations, will explore family-focused perspectives on how to achieve an integrated pediatric service delivery system for children with complex health needs throughout NC.

Issue: Fragmentation of healthcare and social services for children with complex health needs

Children with complex health needs (CCHN) are an important and growing population. CCHN include both children and youth with special healthcare needs (CYSHCN) and children with medical complexity (CMC), accounting for 20% of children and 75% of child healthcare costs. Families raising CCHN in North Carolina face a lack of integration of health and other social services. Fragmentation of healthcare from other social service sectors that address families’ day-to-day needs limits the effectiveness of programs that care for CCHN. The scope of care for CCHN should start with the perspective of each child’s and family’s needs, not each organization’s focus. Additionally, since comprehensive programs that serve CCHN and their families are often tied to health care organizations and health insurance, the capacity of these programs is inadequate to meet the need. The scale of care for CCHN should match the needs of children and families, not be limited by the capacity of specialized health care programs.


The host organizations and partners convened families of CCHN and stakeholders from multiple service sectors to discuss potential solutions to deficits in the scope and scale of care that limit advancement in the health and wellbeing of CCHN.


Participants in the convening produced (1) a set of recommendations to improve service integration (scope) and capacity (scale) to meet the health needs of CCHN in North Carolina, and (2) a list of priority topics for ongoing discussion and collaboration.

For more information on this event, please contact the host organization.