$7.5M Grant to Improve System for Children With Special Health Care Needs
Introduction
In a landmark achievement for the advocacy and support of children and youth with special health care needs (CYSHCN), the American Academy of Pediatrics (AAP) has been awarded a $7.5 million cooperative agreement from the Health Resources and Services Administration's Maternal and Child Health Bureau. This significant grant will pave the way for the establishment of a National Center Consortium (NCC), a collaborative effort involving Boston University, Family Voices, and The National Alliance to Advance Adolescent Health. The primary aim of this initiative is to enhance the existing system of services for CYSHCN, ensuring better care and improved quality of life for these young individuals and their families.
Addressing Disparities and Challenges
Data from the 2020-2021 National Survey of Children's Health (NSCH) revealed a stark reality—only 13.7% of children with special health care needs are receiving care within a well-functioning system. This concerning statistic includes structural racism, ableism, complex and fragmented service systems, and weak connections between clinical and non-clinical supports. The NCC seeks to tackle these systemic challenges head-on and create a more inclusive and effective support network for CYSHCN.
The Blueprint for Change
Central to the NCC's mission is the implementation of the MCHB Blueprint for Change: Guiding Principles for a System of Services for CYSHCN. By working in tandem with state Title V Programs for Children with Special Needs and other stakeholders, the NCC will focus on four key areas:
Health Equity: Ensuring equitable access to care for all children and youth with special health care needs, irrespective of their backgrounds or circumstances.
Financing of Services: Addressing financial barriers that often impede families from accessing crucial services.
Well-being and Quality of Life: Enhancing the overall well-being and quality of life of CYSHCN and their families.
Access to Services: Streamlining access to various services and eliminating silos between different sectors involved in their care.
The Roadmap to Transformation
The NCC will develop an implementation roadmap based on the MCHB Blueprint for Change, outlining actionable steps at the research, practice, and policy levels. This roadmap will serve as a comprehensive guide for state Title V programs, pediatricians, child health clinicians, educators, mental health professionals, community-based organizations, policymakers, and other key stakeholders. By mobilizing all these groups, the NCC aims to bring about substantial change and innovation in the system of services provided to CYSHCN.
AAP President's Enthusiasm
The AAP President, Sandy Chung, MD, MPH, FAAP, expressed her excitement about the new award, highlighting the transformative potential of the NCC. Through this collaborative effort, the AAP and its partners envision driving innovation and change, creating a stronger and more responsive system of services for CYSHCN and their families.
Conclusion
The $7.5 million cooperative agreement awarded to the AAP is a significant milestone in the pursuit of a more inclusive and effective system of services for children and youth with special health care needs. By establishing the NCC in partnership with leading organizations, the AAP aims to address long-standing barriers and disparities faced by CYSHCN and their families. With a dedicated focus on health equity, financing, well-being, and access to services, the NCC's implementation roadmap holds the promise of a brighter future for these resilient young individuals and their families, ultimately transforming and improving the system of care nationwide.