New Frontiers in Title V Implementation
April 2017

How States Use National Standards to Improve Systems of Care for CYSCHN

Kate Taft
Associate Director, Child and Adolescent Health; AMCHP

To foster action within states to improve the system of care for children and youth with special health care needs, the Lucile Packard Foundation for Children’s Health supported AMCHP to develop a set of structure and process standards that represent the necessary components of a comprehensive system of care for children and youth with special health care needs (CYSHCN). Released in 2014, these standards represent the consensus of national experts across multiple systems and are designed to help communities build and improve systems of care for CYSHCN. Since their release, state agencies and organizations – especially Title V CYSCHN programs – have used the Standards as a tool and framework to improve systems of care.

Three years later, Title V programs are seizing the opportunity to use the Standards to make improvements in their health care service delivery systems serving CYSHCN and to be state leaders in standard-setting and implementation.

Title V programs have used the Standards in strategic planning, their Title V needs assessments, building partnerships, identifying action steps for policy- and practice-level change, developing tools for families and stakeholders to identify core elements of a comprehensive system, and more. States are more fully embracing and incorporating the standards into their work, as highlighted by a few examples presented at the AMCHP Annual Conference:

In Minnesota, the children and youth with special health needs (CYSHN) program has incorporated the Standards into a care coordination systems assessment project. The care coordination systems assessment utilized a systems-mapping process, which gathered input from stakeholders in regions across the state to assess strengths, challenges, gaps and redundancies inherent in providing and receiving care coordination among CYSHN and their families.

The Standards were first used to help define the roles and responsibilities of care coordinators across the state, and then were used when developing recommendations to improve care coordination at the state and regional levels. Minnesota’s care coordination systems assessment process is now included as an emerging practice on AMCHP’s Innovation Station. If you have any questions on Minnesota’s project, please contact Sarah Cox, Minnesota Department of Health CYSHN Capacity building unit supervisor, at

In Kansas, the Special Health Care Needs (SHCN) program has incorporated the Standards into its strategic planning, grant planning and workforce development efforts. As part of the strategic planning process, the SHCN program has conducted regional tours, surveys for providers and consumers, and planning meetings. The surveys were developed using the Standards, and the regional tours focused on two of the Standards domains in each phase (e.g., Medical Home, Community-Based Services and Supports, Access to Care, and Eligibility and Enrollment).

As the project continues, SHCN will use the feedback and information to make revisions to the state plans and drive changes to improve systems of care for CYSHCN. If you have any questions about the project, contact Heather Smith, Kansas Title V CYSHCN director, at

As states continue to implement the Standards and reach broader audiences, AMCHP and our partners at the National Academy for State Health Policy are developing resources and tools (assessments, systems alignment tools, Medicaid Managed Care contracting tools, etc.) to advance implementation. Go here for more information about the Standards and upcoming resources.