1 in 5 children in the United States have a special health care need. This National Center for a System of Services for Children and Youth with Special Health Care Needs (CYSHCN) is here to support these children, their families/caregivers and the professionals who care for them.

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What We Do

The goal of the National Center for a System of Services for Children and Youth with Special Health Care Needs (CYSHCN) is to advance and strengthen the system of services for CYSHCN, their families and caregivers at the community, state and national levels.

To accomplish this goal, the National Center will:

  • Develop and disseminate a Roadmap to support implementation of a national framework for CYSHCN.
  • Convene state teams co-led by Title V and families/caregivers to test a national framework for CYSHCN implementation strategies.
  • Provide technical assistance, training, and support on a national framework for CYSHCN. 

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Professional Tools & Resources

Strategy Measures for Medical Home NPM

The National Center developed this resource featuring Evidence-based or -informed Strategy Measures (ESMs) from HRSA MCHB’s Title V Information System to support the medical home National Performance Measure (NPM) with data-driven insights and state examples.

Systems and Policy Level Changes Skill-Building Tools and Resources

Taking Your Title V Work to the Next Level: Strategies, Tools and Partnerships to Affect Meaningful Systems and Policy Level Changes.

Strategies to Advance a National Framework for CYSHCN: At-a-Glance Overview

View details on the 40 strategies outlined in a national framework for CYSHCN.

Aligning Your Work with a National Framework for CYSHCN

The National Center developed this worksheet and accompanying crosswalk to support Title V programs in aligning their work and priorities with a national framework for CYSHCN and their families.

Virtual Town Hall: Charting a New Course for CYSHCN

Watch our virtual town hall Charting a New Course for CYSHCN: Introducing a new National Center for a System of Services. This Town Hall was open to the public and in particular to clinicians, families/caregivers, individuals with special health care needs/disabilities, public health professionals and any other partners serving CYSHCN.  

Population Health and Medical Home: Strategies to Support Title V Programs

Looking to learn more about the medical home national performance measure? This short 15 minute presentation and accompanying slide deck provides an overview of how Title V programs measure access to medical home and presents examples of medical home population health approaches.

Title V CYSHCN Programs Advancing the System of Services for CYSHCN: From the Field

Explore vignettes from Title V CYSHCN programs that address emerging policy issues, priority needs, and embody cross-sector partnerships. These programs align with the principles and strategies outlined to advance the system of services for CYSHCN.

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Tools and Resources for Medical Home Implementation

This section provides practical tools and resources to assist families, practices and others with pediatric medical home implementation and related efforts to enhance collaboration between professionals and families.

National Performance/Outcome Measures Crosswalk

Title V programs can use this crosswalk tool to help understand how current efforts align with a national framework for CYSHCN and prioritize future efforts and optimizing impact in serving CYSHCN.

National Center for a System of Services for CYSHCN Virtual Cafes

The National Center is hosting a series of virtual cafes, crafted for Title V CYSHCN Programs. These virtual cafes provide an interactive space to foster collaboration and facilitate meaningful conversations, share insights, and connected with fellow Title V CYSHCN programs and professionals.

The Medical Home National Performance Measure

This 15-minute presentation provides an overview of the Medical Home National Performance Measure (NPM) with updated guidance and implementation changes for Title V applications and reports. This resource was developed in December 2024.

National Survey of Children’s Health Resources

National Survey of Children’s Health Data Briefs
The National Center for a System of Services for CYSHCN, in collaboration with the Altarum Institute, is developing annual data briefs based on the National Survey of Children’s Health data. These data briefs offer insight into national trends and progress in advancing the system of services for CYSHCN.
National Survey of Children’s Health Factsheets
In collaboration with the Altarum Institute, the National Center developed state factsheets based on the National Survey of Children’s Health (NSCH) data. These factsheets focus on areas from a national framework for CYSHCN.


Title V Needs Assessment Tools and Resources

The tools and resources in this section are meant to support states and jurisdictions throughout their current and ongoing needs assessment activities. 

NSCH Indicators by a National Framework for CYSHCN Areas

Explore how the National Survey of Children’s Health (NSCH) indicators align with areas of a national framework for CYSHCN. States and jurisdictions can use this tool to help monitor their progress on advancing a national framework for CYSHCN during their current and ongoing needs assessment activities.

AMCHP Needs Assessment Workshop

It Takes a Village: How to Integrate a National Framework for CYSHCN and Meaningful Partnerships into your Title V Needs Assessment.

Title V Needs Assessment Focus Group Questions

Focus group questions to help understand how the systems of care serving CYSHCN can work better, particularly from the perspective of families, caregivers, and youth with lived expertise.

Connecting Your Needs Assessment with a National Framework for CYSHCN

This resource was created for state or jurisdiction Title V CYSHCN programs to approach their needs assessment process in alignment with a national framework for CYSHCN. 

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Contact Us

Need technical assistance or support? Submit your inquiries to our team using our contact us form. 

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The work of the National Center is guided by a national framework for CYSHCN. You can read the Pediatrics supplement article here: Pediatrics June 2022; 149 (Supplement 7): 149S7. 10.1542/peds.2022-149S7

The National Center for a System of Services for CYSHCN is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $1,500,000 with no funding from nongovernmental sources. The information or content are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS or the U.S. Government.

Last Updated

06/26/2025

Source

American Academy of Pediatrics