National Standards for Systems of Care for CYSHCN

OverviewStandards Website.JPG

In March 2014, AMCHP, with support from the Lucile Packard Foundation for Children’s Health, released a groundbreaking set of standards designed to help communities, states, and the nation build and improve systems of care for Children and Youth with Special Health Care Needs (CYSHCN). The standards 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. 

They are intended for use or adaptation by a wide range of stakeholders at the national, state and local level. 

Version 2.0 of the National Standards for Systems of Care for Children and Youth with Special Health Care Needs builds on the critical domains, elements, and standards of the original work while streamlining content for easier use by states and stakeholders. 

See our new National Standards interactive website by clicking here or on the picture above. 


Serving CYSHCN in Medicaid Managed Care: Contract Language and the Contracting Process

November 16, 2017 

Recordings are available from an AMCHP webinar that introduced a new tool that can be used alongside the National Standards for Systems of Care for CYSHCN. Title V leaders shared their perspectives on how their CYSHCN programs have been involved in the Medicaid managed care contracting process.

See below to access the slides, discussion handouts, and support resources:
  • Slide presentation.pdf: Karen VanLandeghem, MPH, Senior Program Director, NASHP; Rachel Jew, MPA, Title V CSHCN Director,Texas Department of State Health Services; Susan Chacón, MSW, LISW, Director, Children's Medical Services, Title V Children with Special Health Care Need
  • Medicaid Managed Care Tool.pdf

Standards Action Learning Collaborative 

AMCHP, in partnership with the National Academy for State Health Policy (NASHP) and with the support of the Lucile Packard Foundation for Children's Health, provides intensive technical assistance to states in adapting the Standards (or a specific core domain(s)) to strengthen systems of care for CYSHCN through Action Learning Collaboratives (ALC). Below is a description of the previous and current ALCs that have been supported by AMCHP.

  • networking (1).pngALC Round 1: In 2014, AMCHP worked with eight states – Alaska, Alabama, Illinois, Iowa, Kentucky, Minnesota, Texas and Washington - to conduct multiple group technical assistance events to support the state teams and provide opportunities for them to report concrete examples of how they had shared, used, and implemented the Standards. 

  • ALC Round 2: In March 2017, AMCHP, in partnership with NASHP, launched the second round of the ALC with two states – Georgia and New Mexico. AMCHP provided technical assistance to implement the Standards and support to state teams in piloting new Standards implementation tools.

  • ALC Round 3: In 2017, seven states (DE, GA, MA, NV, NM, RI and WV) were selected to participate in a year-long learning collaborative designed to assist state efforts to improve Medicaid managed care for children with special health care needs. The collaborative will be facilitated by NASHP, in partnership with AMCHP. NASHP and AMCHP will provide technical assistance and learning opportunities, with emphasis placed on use of the National Standards for Children and Youth with Special Health Care Needs and Medicaid quality measurement. 
For background on the components of an Action Learning Collaborative, click here

2018 AMCHP Conference: Standards Session

February 10, 2018

  • Presentation slides 
    • West Virginia: "Title V Block Grant Incorporating the National Standards for Systems of Care for CYSHCN" [pdf]
      Saylem DePasquale, MS, CSHCN Epidemiologist
    • Massachusetts: "Committing to National Standards: Implications for Data and Quality Measures and Strengthening Medicaid Managed Care for Systems of Care for CYSHCN" [pdf]
      Carolyn Langer, MD, JD, MPH MassHealth, Office of Clinical Affairs Associate Professor, UMass Medical School
    • Georgia: Carmen Coates, Families Advocating for Voices of Resilience [pdf]
  • Session notes


AMCHP has developed multiple resources and tools that can be used when implementing the Standards. Check them out below! 

National Standards for Systems of Care for Children and Youth with Special Health Care Needs 
Standards Tools 

Other Related Resources 

​To access Standards 2.0 for a streamlined look at the Standard Domains, click the image below!

Standards 2.0.JPG

To access Standards 1.0 for an in-depth look at the Standard Domains, click here

To access the Standards White Paper detailing how the Standards are structured and were developed, click here!

State Examples

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Following their publication, the Standards were broadly disseminated across all states. In a 2015-16 survey of state Title V CYSHCN Directors, we found that 35 states are using the Standards to some degree. States that have used the Standards reported that they help recognize the systemic needs of all CYSHCN, address systems of care comprehensively and they are based on evidence-based or evidence-informed practices.

Below are a couple state examples of how the Standards have been used. This page will be updated on an ongoing basis as we feature different state examples. 





Project Description: Kansas conducted a strategic planning project to identify needs and opportunities to improve the current system of care and enhace workforce capacity to meet state needs. 

Method of Standards Use: The Kansas team facilitated regional tours, developed provider and consumer surveys, and conducted internal planning meetings using the Standards Domains as a framework to highlight strengths and identify areas for improvement. 

Kansas presentation slides at AMCHP 2017 

Program Contact: Heather Smith, Kansas Department of Health and Environment, Bureau of Family Health,

Project Description: Minnesota aimed to assess what is occurring across the state around the provision and receipt of care coordination services by bringing together coordinators and parents as a means of fostering connections and networks.

Method of Standards Use: The Minnesota team conducted meetings across the state during 2015 and 2016 and used the Standards as a mechanism to define how to achieve a coordinated system of care, and identify needs that helped develop a statewide care coordination framework.

Minnesota presentation slides at AMCHP 2017

Program Contact: Sarah Cox, Minnesota Department of Health, Children and Youth with Special Health Needs Program,

Staff Contacts

KateT.JPGKate Taft
Associate Director; Child & Adolescent Health
(202) 266-3056
Paige Bussanich2.jpgPaige Bussanich
Senior Program Manager, CYSHCN
(202) 266-3042
Shanel Tage
Program Analyst, CYSHCN
(202) 266-3046