AMCHP to Convene Stakeholder Work Group to Develop National Consensus Framework for Improving Quality Systems of Care for CYSHCN

By Karen VanLandeghem, MPH
Senior Advisor, National Center for Health Reform Implementation, AMCHP

AMCHP, with funding from the Lucile Packard Foundation, is leading a project to compile, define and reach consensus among key national stakeholders on the desired capacity and performance of systems of care serving CYSHCN. Creating a comprehensive, quality system of care for CYSHCN has been one of the most challenging and pressing priorities for state health leaders and other stakeholders, such as pediatricians and family physicians, health plans, state Medicaid and Children’s Health Insurance Program (CHIP) agencies, and families. The Patient Protection and Affordable Care Act (ACA) has further heightened this need as states prepare to extend coverage to millions of uninsured adults and children, design Essential Health Benefits, and implement new quality provisions, among other areas.

Achieving consensus on the desired capacity and performance of systems of care serving CYSHCN is essential to building and strengthening comprehensive, quality systems of care for these children. Over the past two decades, numerous national reports, initiatives, and research have described frameworks, standards and various measures for such a system. For example, the Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB) adopted six critical system outcomes for children and youth with special health care needs. The framework serves as an important guide for state CYSHCN programs in developing systems of care. Other related work includes, but is not limited to, the Title V MCH Services Block Grant performance measures and health system capacity indicators, National Committee on Quality Assurance quality standards, the Child Health Insurance Program Reauthorization Act (CHIPRA) Quality Measures, and the Pediatric Managed Care Contracting Purchasing Specifications developed by The George Washington University.

These and other efforts have helped create an important starting point for many states, communities, providers and national organizations to build systems of care for CYSHCN. However, they have not all resulted in states, communities and providers having the specific tools and resources to use and apply a commonly recognized and endorsed national set of standards for systems of care serving CYSHCN to fully measure progress, improve health care quality, and improve health outcomes for this population of children.

This project will compile and synthesize this work into a document that is endorsed or supported by a national group of stakeholders, including AMCHP, the American Academy of Pediatrics, the HRSA/MCHB, Family Voices, and the National Association of State Medicaid Directors. Additional materials, such as a toolkit, that states could use to strengthen their systems of care for CYSHCN also may be developed.

A National Stakeholders Work Group comprised of representatives from state Title V CYSHCN programs, state Medicaid agencies, provider groups, children’s hospitals, families, and others will be convened to build and reach consensus on desired capacity and performance of systems of care serving CYSHCN. The work group also will provide guidance to the development of a national consensus document that outlines and describes desired capacity and performance of systems of care serving CYSHCN. For more information about the project, please contact Karen VanLandeghem, senior advisor to AMCHP and project director, or Treeby Brown, associate director, child and adolescent health, AMCHP.