CYSHCN Publications

​Articles and Publications

Standards for Systems of Care for Children and Youth with Special Health Care Needs Version 2.0 - 2017

Association of Maternal & Child Health Programs, National Academy for State Health Policy

Abstract: Creating a comprehensive, quality system of care for CYSHCN has been one of the most challenging areas for state health leaders and other stakeholders.To address this challenge, the National Standards describe the core components of the structure and process of an effective system 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, published in 2017, have been updated to increase the readability and ease of use while also maintaining their integrity and essential content of Version 1.0. 

Standards for Systems of Care for CYSHCN Version 1.0 - 2014

Association of Maternal & Child Health Programs

Abstract:Version 1.0 of the National Standards describe the core components of the structure and process of an effective system of care for CYSHCN. They were derived from a comprehensive review of the literature, early guidance during the project 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 comprised of national and state leaders representing state Title V CYSHCN programs, health plans, state Medicaid and CHIP agencies, pediatric providers, children’s hospitals, insurers, health services researchers, families/consumers, and others. Click here to view the document.

Developing Structure and Process Standards for Systems of Care Serving Children and Youth with Special Health Care Needs: A White Paper from the National Consensus Framework for Systems of Care for Children and Youth with Special Health Care Needs Project

This white paper, from the National Consensus Framework for Improving Quality Systems of Care for Children and Youth with Special Health Care Needs project, compiles the extant research on desired capacity and performance of systems of care serving CYSHCN, summarizes input from key stakeholders as to the recommended focus of this work, and includes case studies of four sites that are using system standards in their work with CYSHCN. Click here to access the white paper.

Fact Sheets and Reports

National Title V Children and Youth with Special Health Care Needs Program Profile

This 2017 report presents the results of a survey of Title V CYSHCN directors. The report provides a snapshot of CYSHCN programs across the U.S. and insights into program structure and strengths, roles in systems of care, CYSHCN program partnerships, financing of care for CYSHCN and emerging issues for CYSHCN programs. Click here to access the report.

Early Childhood Developmental Screening and Title V: Building Better Systems

This 2017 issue brief provides insight into Title V program developmental screening activities. These activities may help address the growing incidence of DD and improve comprehensive systems and services to better support early childhood development. Click here to read the brief.

State Strategies and Initiatives to Improve Developmental and Autism Screening, and Early Identification Systems 

This 2014 report includes initial findings from an environmental scan AMCHP conducted in summer 2014 of 185 source documents in an effort to capture the wide range of developmental screening activities occurring within all U.S. states and territories. Click here to read the report.

The Affordable Care Act and Children and Youth with Autism Spectrum Disorder and other Developmental Disabilitites

This 2012 fact sheet offers a brief description of selected provisions in the ACA that have implications for CYSHCN with ASD/DD. It also describes how state Title V programs can maximize opportunities under the ACA to develop and strengthen systems of care for CYSHCN with ASD/DD. Click here to access the fact sheet.

Roles for State Title V Programs in Building Systems of Care for Children and Youth with Autism Spectrum Disorder and other Developmental Disabilitites

This 2011 report offers a framework designed to help states determine appropriate roles and approaches to pursue in building, improving, and sustaining their system of care for children and youth with ASD/DD and their families. 

Models of Care for Children and Youth with Special Health Care Needs: Promising Models for Transforming California’s System of Care

The goal of this 2009 report is to provide a range of models of care for CYSHCN that the Lucile Packard Foundation for Children’s Health can review and discuss as a starting point for mapping out a strategy to transform the system of care. Click here to access the report.

E-learning Modules

History of Title V CYSHCN Programs

This  module was developed in response to a growing need to understand the challenging context that has led to the current structure and policies around Title V CYSHCN programs. Click here to access the module.

Communicating the Value of Developmental Screening

This informational module aims to build capacity of Title V leaders and other health professionals in articulating the value of developmental screening with various stakeholders. Click here to access the module.