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 CYSHCN: Defining and Implementing National Standards and Systems

By Meredith Pyle
Senior Program Manager, CYSHCN

In 2014, AMCHP continued to build capacity to build quality, comprehensive systems of care for CYSHCN. Along with the AMCHP State Public Health Autism Resource Center (SPHARC) projects (see Child Health feature), AMCHP focused systems-building efforts for CYSHCN on three primary areas: 1) support for state Title V CYSHCN directors; 2) systems development; and 3) partnerships. Two major projects facilitated this work: the Leadership Institute for CYSHCN Directors (LICD) program, and dissemination and implementation of the National Standards for Systems of Care for Children and Youth with Special Health Care Needs.

AMCHP receives funding from the Lucile Packard Foundation for Children's Health to provide targeted technical assistance and broad leadership and learning opportunities for state Title V CYSHCN directors via the LICD program. The goal of the program is to improve the effectiveness of state Title V CYSHCN directors to lead and transform their programs in a time of change by providing targeted, intensive, and ongoing training while promoting a more comprehensive picture of CYSHCN populations in the context of the life course approach, health equity/health disparities, and transitions to adult care. Over the past year, AMCHP has provided targeted programming through webinars and in-person meetings, covering timely and important topics including Title V Block Grant Transformation, meaningful family engagement, strategies and tips for using the National Standards for CYSHCN in Title V needs assessments and objective and measure development, and changes to the new National Survey of Children's Health. Peer-to-peer support is facilitated through a listserv. More than 45 directors receive technical assistance and support through the LICD program.

Released in March 2014, the National Standards for Improving Quality Systems of Care for Children and Youth with Special Health Care Needs features process and structural standards for health care systems serving CYSHCN developed by national and state experts. The standards have been very positively received in the public health and provider communities. AMCHP, supported by the Lucile Packard Foundation for Children's Health, is providing peer learning and targeted technical assistance to interdisciplinary teams from eight states to strengthen state health systems for CYSHCN by using or adapting the standards. Lessons learned and promising practices from this Action Learning Collaborative (ALC), which runs from October 2014 – September 2015, will be shared and promoted to support other states implementing the standards to improve systems of care for CYSHCN and to strengthen partnerships among state Title V CYSHCN programs, state Medicaid/CHIP agencies, families, health plans, and pediatricians. Early products from the ALC include a set of draft tools that states can use to assess systems of care for CYSHCN according to the standards and to introduce and orient stakeholders to the standards (the tools are available here). In Spring 2015, AMCHP will develop a Web-based toolkit that provides resources to assist states with standards implementation.