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.
National Standards for CYSHCN One-Pagers Showcase Most Utilized Domains, June 2020. These five one-pagers highlight the most used domains from the National Standards for Systems of Care for Children and Youth with Special Health Care Needs (CYSHCN). They include identification and assessment, access to care, transition to adult care, medical homes, and community-based services and supports. The downloadable one-pagers include standards language, relevant quality measures, and state implementation examples.
How States Use the National Standards for CYSHCN in their Health Care Systems, October 2019. This map and charts showcase the many ways states are using the National Standards for Children and Youth with Special Health Care Needs (CYSHCN) to improve their systems of care and ultimately health outcomes for CYSHCN. It illustrates how states are integrating the National Standards into their Medicaid and state Title V Maternal and Child Health Services Block Grant programs.
Association of Maternal & Child Health Program Case Studies To learn more about how Title V programs are implementing the National Standards, these five case studies offer strategies and best practices.
- Rhode Island’s Title V Program: Using National Standards to Guide Improvements in Statewide Care Coordination
- Iowa’s Title V CYSHCN Program: Using the National Standards to Build Family Leadership and Partnership
- New Mexico’s Title V CYSHCN Program: Using the National Standards as a Framework for Educating Stakeholders
- New York’s Title V CYSHCN Program: Using the National Standards as a Framework for Action Planning and Data Analysis
- Washington’s Title V CYSHCN Program: Using the National Standards as a Framework to Sustain Statewide Systems Improvements
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.
Medicaid Managed Care
How States Use the National Standards for CYSHCN to Strengthen Medicaid Managed Care for Children with Special Health Care Needs
The various state examples outlined here resulted from a 12-month learning collaborative facilitated by NASHP, in partnership with the Association of Maternal & Child Health Programs (AMCHP), with support from the Lucile Packard Foundation for Children’s Health (LPFCH).
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 and Tips
Critical Tools to Improve Systems of Care for CYSHCN: Making the National Standards Work for You — This series of tip sheets from the Association of Maternal & Child Health Program highlight how the National Standards can be used by stakeholders:
- Tips for Families on working with the National Standards
- Tips for Health Plans to implement the National Standards
- Tips for Medicaid to implement the National Standards
- Tips for Providers to implement the National Standards
- Tips for Title V on implementing the National Standards
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.
Association of Maternal & Child Health Program E-learning Modules For an interactive learning experience, take a deeper dive into quality measurement for improving systems of care for CYSHCN. These learning modules take less than 30 minutes each to finish and feature interactive learning environments and perspectives from the field.
- Module 1: Using Quality Measures, Data, and National Standards to Improve Systems of Care for CYSHCN
- Module 2: Use of Medicaid Data and Quality Measures in Improving Systems of Care for CYSHCN
- Module 3: The Use of Title V Data and Measures to Improve Systems of Care for CYSHCN
National Standards for CYSHCN Measures Compendium This measures compendium highlights quality measures for a system of care for CYSHCN outlined in the National Standards of Care for Children and Youth with Special Health Care Needs. This tool features data and quality measures from applicable and widely used measure sets to help states evaluate how well their system of care is serving CYSHCN.
Blog: New NASHP Tool Identifies Key Quality Measures for CYSHCN This blog provides background on the importance of quality measurement for CYSHCN and an overview of the National Standards for CYSHCN Measures Compendium.