Information and Resources
We have found that parents often identify a lack of information about resources as one of the greatest barriers to care giving.
For families and many professionals, finding resources is often like navigating a complicated maze with no clear set of directions.
"Made me want to cry because someone else gets it.”
The five Regional Centers were developed so that families across the state now have a central point from which to obtain information and referral. Families and providers may call the Northeast Regional Center for Children and Youth with Special Health Care Needs and talk with other parents of CYSHCN one on one about specific questions or concerns. Staff can provide information that is free, up-to-date and confidential! Staff can suggest a wide variety of resources about:
- Emotional support, home care, sibling support, recreation programs and more.
- Diagnosis-specific information through agency brochures, books, websites, and articles from “how-to” tips to scholarly research.
- Education concerns related to school issues and special education services that impact children with special health care needs.
- Information regarding financial assistance including current information on health benefits, assistance when benefits are denied, and information on possible alternative sources of payment.
Center staff also make referrals to community agencies, state and national organizations. In addition, they recommend books, videos and/or websites that may help with transition concerns, communicating with doctors, dealing with grief, employment and future planning for youth with special needs, emotional support, parenting a child with special needs and more. Recommendations about a variety of listservs, newsletters, and training opportunities are also provided.
Families and providers may email questions to firstname.lastname@example.org and staff will respond within 2-3 business days.