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 National Standards Designed to Help States Build Quality Systems of Care for Children and Youth with Special Health Care Needs

By Karen VanLandeghem, MPHNew - Karen V.jpg
Senior Advisor, AMCHP

In March of 2014, AMCHP, with support from the Lucile Packard Foundation for Children's Health, released a groundbreaking set of standards and companion background white paper designed to help communities, states, and the nation build and improve systems of care for CYSHCN. "This set of standards, built around a framework and the guidance of a diverse set of stakeholders, represents one of the first efforts of its kind to comprehensively and systematically collect and categorize system standards that affect CYSHCN and their families," said AMCHP President Millie Jones in a press release about the work.

The standards address the core components of the structure and process of an effective system of care for CYSHCN. They were derived from a comprehensive review of the literature, early project guidance from more than 30 key informants, case studies of standards currently in use within selected sites, and input and guidance from a national work group comprised of national and state leaders representing state Title V CYSHCN programs, state Medicaid CYSHCN Standards.jpgagencies, pediatric providers, health plans, children's hospitals, families/consumers, health services researchers, and others. They were developed for use or adaptation by a wide range of stakeholders at the national, state and local levels.

"All of us working with special needs children and their families know how important it is to have a high-quality, coordinated system of care designed to meet their needs. Until now, we have found it easy to identify what is lacking, but much more difficult to describe what a comprehensive health care system would look like. We believe that this report and its accompanying guide should serve as a benchmark for those responsible for designing and operating health care systems for these especially vulnerable children." said Ed Schor, senior vice president at the Lucile Packard Foundation for Children's Health, in announcing the availability of the standards.

Creating a comprehensive, quality system of care for CYSHCN has been one of the most challenging areas for state health leaders. The Affordable Care Act is extending coverage to millions of uninsured children and adults, designing essential health benefits, and implementing new provisions to achieve the 'Triple Aim' of improving the patient experience of care, improving the health of populations, and reducing health care costs. These changes are heightening the need for system standards.

Since their release, the standards have been met with wide support and interest by state and national leaders. For example, the Maternal and Child Health Bureau, Health Resources and Services Administration referenced the standards in a recent grant announcement and the Centers for Medicare and Medicaid Services is promoting them with state Medicaid agencies. AMCHP will be leading several activities to further promote use of the standards in states. These activities include: development of an interactive, online tool kit that will house the standards and additional products – existing and to be developed – related to their use, technical assistance to selected states that are interested in using the standards to improve their system of care for CYSHCN, and further national dissemination. Additionally, AMCHP plans to seek support for work to develop metrics that would align with the standards. These metrics could be used by states, particularly state Title V MCH programs in development of national performance measurement activities for the Title V block grant program.

For more information about this project, please contact: Karen VanLandeghem, senior advisor,