Regional Support Centers (RSCs) for the Children and Youth with Special Health Care Needs (CYSHCN) Program (CYSHCN Project)
Definition of Children and Youth with Special Health Care Needs
The New York State Department of Health (NYSDOH) defines CYSHCN as people from birth to 21 years old who have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and also require health and related services of a type or amount beyond that required by children generally.
This includes those with developmental, emotional, intellectual, learning, medical, physical, or other needs including, but not limited to: asthma, ADD/ADHD, allergies, anxiety, Autism Spectrum Disorder, behavior/conduct, Cerebral Palsy, Cystic Fibrosis, depression, diabetes, epilepsy/seizure disorders, genetic/inherited disorders, brain Injury, concussion, or head injury, deafness or problems with hearing, mental health, migraines, speech/language delay, substance use disorder, blindness or problems with seeing, etc.
For more information on CYSHCN:
- Children and Youth with Special Health Care Needs (CYSHCN) Program
- Children with Special Health Care Needs, NSCH Data Brief, July 2020 (PDF)
CYSHCN Project Aims
The Project is carried out by three Regional Support Centers (RSCs):
- Rose F. Kennedy (RFK) UCEDD at Einstein/Montefiore "Einstein RSC"
Focuses on: New York City and Long Island - Strong Center for Developmental Disabilities at the University of Rochester "Rochester RSC"
Focuses on: Western and Central NY and Southern Tier - Westchester Institute for Human Development (WIHD) "WIHD RSC"
Focuses on: Eastern NY from Hudson Valley to the Northern NY border
Aim #1: Webinars for Local Health Departments
New York State (NYS) Local Health Departments (LHDs) help CYSHCN and their families by providing information and referrals including but not limited to community resources, health insurance and connecting them with health care providers. They also work with families to help them meet the medical and non-medical needs of their children.
The CYSHCN Project intends to build the capacity of LHDs to support CYSHCN and their families.
As a part of capacity building, the RSCs host quarterly professional development and informational webinars for the NYS LHDs.
To listen to recorded versions of live webinars please click here to go to the University of Rochester website or here to go to the Westchester Institute of Human Development website.
- Supporting Families of CYSHCN during COVID-19!
Featured organization: INCLUDEnyc - Family-Professional Partnerships!
Featured organization: Parent to Parent of New York State (PTP NYS) - Supporting Families with Mental Health Needs during COVID-19!
Featured organization: National Alliance on Mental Illness (NAMI) of New York State (NYS) - Supporting Youth through Health Care, Recreation, and Employment Transitions
Featured organizations: Healthy Transitions NY and Project SEARCH - Breaking Down the Walls: Support Healthy Sexuality for LGBTQ People with I/DD
Featured organization: Elevatus Training - Effective Communication for Diverse Individual and Family Styles
Featured organization: Open the Lid - What Matters: Motivational Interviewing (MI) + Quality Improvement (QI) to Reduce Assessment Burden
Featured Speaker: Damara Gutnick, MD. View the slide deck associated with the webinar. - Lessons Learned from Families of CYSHCN (YouTube)
Aim #2: Resource Directory
We are currently working on creating our resource directory! It will be up on Health Data New York (HDNY) soon. Check out New York State Multiple Systems Navigator for more resources.
Aim #3: Engage Families
Through discussion groups and interviews, the RSCs learned about families' needs and experiences across New York State to improve CYSHCN Programs at NYS Local Health Departments. Now, the RSCs are developing reports for the NYSDOH to inform positive change in the NYS CYSHCN program.
- 12/08/2021: Family Forum Presentation (PDF)
- 07/12/2021: Family Forum Presentation (PDF)
- LHD Contractor Webinar Data Presentation (PDF)
- Voices of Families Caring for Children with Special Health Care Needs: AUCD 2021 Presentation (PDF)
Educational and Training Materials
Advocacy
RSCs are developing educational materials, training webinars, and video vignettes for CYSHCN and their families/caregivers and providers.
- Family Support Webinar (English)
- Family Support Webinar (Spanish)
- Community Integration Webinar (English)
- Barriers to Community Integration (Spanish) - Barreras a la Integración Comunitaria (YouTube)
- Parent Advocacy Webinar (English)
- Parent Advocacy Webinar (Spanish) - Presentación Sobre la Abogacía
- Parent Advocacy家長倡導 Webinar (Chinese Slide Deck) (PDF)
- Educational Video #1: Health Care Transitions
CYSHCN Clips!
The RSCs produce a biweekly newsletter for CYSHCN Program staff at NYS LHDs. The newsletter features professional development opportunities, upcoming events, and recent research.