Regional Support Centers for Children and Youth with Special Health Care Needs

2024

The over-arching goal of this 5-year project is to inform the provision of services for CYSHCN in New York State in collaboration withe the State's 2 other UCEDDs. Objectives include: 1: Family Engagement- Continuous qualitative input from parents/caregivers is essential to developing and promoting a comprehensive system of services for CSHCN and their families in NYS. A family member/members with CSHCN with our UCEDD for this project has a lead role on family engagement activities to determine needs, barriers, and opportunities for optimizing their experiences with CSHCN systems. These activities include; a) Focus groups- with parents and youth with CYSHCN from New York City and Long Island re: need, access, and use of health, social, and community services, b) Individual interviews- see Focus groups. Due to Covid-19, groups and interviews have been held virtually. Our UCEDD has, additionally, focused on the conduct of Spanish and Mandarin speaking groups. 2: Needs Assessment of Local Health Departments (LHDs) - in NYC and Long Island to gather feedback and determine gaps and barriers and type of TA needed to make their CSHCN Program effective. 3: Collect regional resource information- Develop and implement a template to collect information from LHDs on community resources, existing social supports and trainings available in their regions. Our UCEDD will update this resource directory throughout the project, and share resources with DOHs Multiple Systems Navigator for consistency.

CYSHCN, services, health department

Performing Research or Evaluation, Developing & Disseminating Information

Health-Related Activities

Family Members/Caregivers, Children/Adolescents with Disabilities/SHCN, Legislators/Policy Makers

Racial or Ethnic Minorities, Disadvantaged Circumstances, Limited English, Geographic Areas, Urban

Mulit-County

N/A