National Standards for Systems of Care

for Children and Youth with Special Health Care Needs

Welcome to the National Standards for Systems of Care for Children and Youth with Special Health Care Needs (CYSHCN) website. This site is designed for easy navigation of the National Standards 2.0, a comprehensive set of system standards that can be used or adapted for use by various systems and organizations that serve CYSHCN. This includes state Title V programs, state Medicaid and CHIP programs, private and public health plans, pediatricians and other health care providers, family/consumer groups, as well as families themselves.

 About CYSHCN

CYSHCN are defined as those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.

Approximately 19.4 percent of all U.S. children ages birth to 17 years (nearly 14.2 million children) have a chronic and/or complex health care need. 1 A smaller but growing group of children have complex health care needs (approximately 3 million children), with estimates for children with the highest levels of need ranging from 0.4 – 0.7 percent of all U.S. children (approximately 320,000 – 560,000 children). 2

As the nation grapples with an evolving health care landscape, the need for an endorsed set of standards that can be used and applied within health care systems to result in effective and quality health care systems for CYSHCN becomes even more important.

 Executive Summary

Creating a comprehensive, quality system of care for CYSHCN has been one of the most challenging areas for state health leaders and other stakeholders such as state Title V CYSHCN programs, health plans, private insurers, state Medicaid and CHIP agencies, pediatricians and family physicians, and families. For more than three decades, numerous national reports, initiatives and research studies have described or called for frameworks, standards, and various measures to advance a comprehensive system of care for CYSHCN and their families.

In March 2014, the National Consensus Framework for Improving Quality Systems of Care for Children and Youth with Special Health Care Needs project, funded by the Lucile Packard Foundation for Children’s Health, released a core set of structure and process standards for systems of care for CYSHCN. These National Standards were the result of decades of work to establish an endorsed set of standards that could be used and applied within health care systems to improve quality and outcomes for CYSHCN. The system standards were fully vetted by a national work group comprised of state and national leaders with expertise in CYSHCN, health systems, and quality measurement.

Version 2.0 of the National Standards for CYSHCN uses and builds upon the critical domains, elements, and standards from the original National Standards work, while streamlining content for easier use by states and stakeholders. It is organized by eight core domains, with Family Professional Partnerships and Insurance and Financing as foundational standards that should exist in any system that serves CYSHCN.

 Partners

This project is a partnership between The Association of Maternal & Child Health Programs (AMCHP) and the National Academy for State Health Policy (NASHP). We extend our sincere thanks and appreciation to the Lucile Packard Foundation for Children’s Health for its funding of this project.

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