Toolkit: National Standards for Children and Youth with Special Health Care Needs

The National Standards for Systems of Care for Children and Youth with Special Health Care Needs (CYSHCN) define the core components of a comprehensive, coordinated, and family-centered system of care for CYSHCN. Nearly 20 percent of US children under age 18 have special health care needs. This toolkit provides a portal to critical tools, fact sheets, and other resources that states can use to design, strengthen, and improve health care systems serving CYSHCN and their families.

The National Standards for CYSHCN were developed with input from a national work group whose members include families of CYSHCN, state Medicaid agencies, public health, researchers, children’s hospitals, health plans, health plan certification entities (e.g., National Committee for Quality Assurance), provider groups, and other stakeholders. Since its release in 2014, many Medicaid and Children’s Health Insurance Program (CHIP) agencies, other government programs, health care systems, consumers, and others have used these standards as guideposts to improve systems of care for CYSHCN in an ever-changing health care landscape.



Developing Structure and Process Standards for Systems of Care Serving CYSHCN White Paper provides a detailed history of their development, an analysis of why system standards are needed, interviews with key stakeholders, and case studies highlighting how states use the standards to drive system improvements.

National Standards for Systems of Care for CYSHCN Fact Sheet provides an overview of the standards and examples of how state policymakers have used them to improve systems of care for CYSHCN.

Standards for Systems of Care for Children and Youth with Special Health Care Needs – Version 2.0 
View the web version

Medicaid Managed Care

Medicaid Managed Care Contract Language Tool highlights effective state strategies to manage contracts with Medicaid managed care organizations (MCOs) to better serve CYSHCN. It includes contract language from four Medicaid-MCO contracts that meet access, quality assurance and improvement, and care coordination standards.

Crosswalk to NCQA Primary Care Medical Home Recognition Standards helps states and health plans understand how National Committee for Quality Assurance (NCQA) accreditation requirements for health plans align with the national standards. More than 30 state Medicaid programs either use or require NCQA health plan accreditation in their programs.

Assessment Tools

Single Organization Assessment Tool: This tool is a self-assessment tool for Title V programs, state Medicaid and CHIP agencies, health plans, provider groups, families, and family partner organizations. It allows an organization to assess how well it provides access and care for CYSCHN and their families, and assess its capacity to implement or improve policies and processes to adhere to national standards.

Multiple Organization Assessment Tool: This broad systems analysis tool is for organizations and multi-disciplinary groups serving CYSHCN and their families. It allows agencies to assess how well organizations and the broader system are structured to provide access and quality care and also assesses organizational capacity to implement or improve policies and processes as outlined in the standards.

Partnership Assessment and Relationship Profile: This tool identifies strengths and areas of needed growth across partners serving CYSHCN.

Systems Improvement Alignment Tool identifies state CYSHCN systems improvement-related efforts and ways to align those efforts with the national standards.


Serving CYSHCN in Medicaid Managed Care: Contract Language and the Contracting Process (recording and slides), shares how the contract language tool can be used and explores how Title V leaders have been involved in the Medicaid managed care contracting process