Children and Youth with Special Health Care Needs (CYSHCN) Regional Support Centers (RSC): A framework for effectively engaging stakeholders

The three University Centers for Excellence in Developmental Disabilities (UCEDDs) in New York served as Children and Youth with Special Health Care Needs (CYSHCN) Regional Support Centers (RSC). The RSCs aimed to increase the capacity of local CYSHCN programs to connect with and support CYSHCN and their families in their community. RSCs conducted activities in the areas of family engagement, training and educational materials development, and technical assistance. RSCs engaged in ongoing dialogue with CYSHCN and their families to learn about experiences to inform systemic improvements through focus groups, interviews, and surveys. This article describes a statewide framework to serve and support CYSHCN and their families, which promotes data-driven quality improvement that incorporates family engagement at all levels. Data from conversations with families of CYSHCN informed systemic improvements through the following themes: 1) a disability diagnosis impacts and puts demands on the entire family; 2) parents of CYSHCN must develop and communicate detailed understanding of their children’s needs regarding health care, education, child care, and other supports; 3) parents often experience difficulty navigating systems when seeking services and supports; and, 4) community inclusion is difficult to achieve due to limited understanding and support. Informed by feedback from families, RSCs provided local CYSHCN programs with ongoing, individualized technical assistance to develop outreach strategies and resources. RSCs are a viable option to engage parents and improve services to CYSHCN in local communities.