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$7.5M Grant to Improve System for Children With Special Health Care Needs

The Health Resources and Services Administration’s Maternal and Child Health Bureau has awarded the American Academy of Pediatrics (AAP) a $7.5 million cooperative agreement to form a new national center for a system of services for children and youth with special health care needs (CYSHCN). The project will start in July 2023 .

With the five-year cooperative agreement, the AAP will establish a National Center Consortium (NCC) with Boston University, Family Voices, and The National Alliance to Advance Adolescent Health. The goal of the collaboration is to provide better care for more children and youth with special health care needs by supporting the implementation of the MCHB Blueprint for Change: Guiding Principles for a System of Services for CYSHCN.

male physician using ASL with child with special health care needs
(Shutterstock)

According to the 2020-2021 National Survey of Children’s Health (NSCH), only 13.7% of children with special health care needs receive care in a well-functioning system. The Maternal and Child Health Bureau identified structural racism, ableism, complicated and siloed service systems, and weak links between clinical and non-clinical supports as some of the reasons. One of the goals of the NCC will be to assist state Title V Programs for Children with Special Needs and various stakeholders who serve children and youth with special needs and their families. Strategies will be implemented in four critical areas: health equity; financing of services; well-being and quality of life; and access to services to improve the cross-sector systems serving this population.

“The AAP is thrilled to receive this new award,” said AAP President Sandy Chung, MD, MPH, FAAP. “Through this new National Center, the AAP and its partners will work across the intersections of the four critical areas of the Blueprint for Change to drive innovation and change to advance and strengthen the system of services for children and youth with special health care needs and their families.”

To advance the system of services, the NCC will develop an implementation roadmap based on the MCHB Blueprint for Change: Guiding Principles for CYSHCN that identifies actionable steps at the research, practice, and policy levels for sectors serving CYSHCN and their families across their lifespan. The target audience includes state Title V programs, families, pediatricians, child health clinicians, education professionals, early childhood and adolescent experts, mental and behavioral health professionals, community-based organizations, payers, health systems, and policymakers.

The systemic barriers facing children and youth with special health care needs and their families are long-standing and underscore the need for new approaches to advance the system of services. The AAP and its partners are committed to transforming and improving the systems of services for CYSHCN and their families through the NCC and subsequent national center.

Kudos to all advocates dedicated to the disability community. 

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