Takeaways from the Children and Youth with Special Health Care Needs National Summit

In 2020, the Maternal and Child Health Bureau (MCHB) convened families, providers, researchers, government staff, and nonprofit organizations for the CYSHCN Summit Series. Over the course of five virtual sessions, participants provided strategic guidance on improving systems of care for children and youth with special health care needs. Mathematica synthesized Summit feedback and produced meeting proceedings that captured the topics covered, major themes and unique perspectives of participants, and experts’ recommendations. We analyzed recommendations across the four topic areas in the Blueprint for Change: (1) health equity, (2) family and child well-being and quality of life, (3) access to services and supports, and (4) financing of services. MCHB used feedback from the Summit to inform its national framework for an improved system of services for children and youth with special health care needs known as the Blueprint for Change.

Along with summarizing participants’ feedback from the Summit, Mathematica supported the publication of a special journal supplement in Pediatrics, which disseminated the MCHB’s Blueprint for Change.  

To further help MCHB understand the current landscape of health care services for children and youth with special health care needs, Mathematica conducted two environmental scans, including one on existing systems of care for this group and one on measures of patient and family engagement in care.