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Abstract

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.

Plain Language Summary

Three sites assisted local programs to connect with and support families of children with special needs. The sites collected information from families, created educational materials, and supported local programs. In total, 340 parents participated in focus groups, interviews, and/or surveys. The data from family experiences informed training topics and educational materials created. Data from families informed improvements to local programs through the following themes.

  1. A child’s disability affects the whole family and creates new demands.
  2. Parents need to explain their child’s needs across systems.
  3. It’s often hard for parents to find and use the services their child needs.
  4. Limited understanding of and support for diverse needs in community settings.

The sites offered tailored support to help with outreach and resources. This process is an effective framework for family engagement.

Creative Commons License

Creative Commons Attribution-Noncommercial 4.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 4.0 License.

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