Down Syndrome - Our Community

North Carolina’s Dynamic Down Syndrome Community

Whether you just found out that you are expecting a child with Down syndrome or your child is facing one of life’s many transitions, you may be wondering what many before you have wondered, “what now?” You are not alone. In fact, North Carolina has a very diverse, active, and supportive community of people who have faced the very questions you may be asking.

We encourage you to ask your health care professional, service provider, LME-MCO or the N.C. Division of Mental Health, Developmental Disabilities, and Substance Use Services (DMH/DD/SUS) for resources in your area. For DMH/DD/SUS contact information, as well as resources across North Carolina, please see our resources page.

Helpful Links

Understanding a Down syndrome diagnosis
An accurate, balanced, and up-to-date booklet for use when delivering a diagnosis of Down syndrome and is part of the National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute (HDI).

DS-Connect - from the National Institutes of Health
DS-Connect® is a powerful resource where people with Down syndrome and their families can connect with researchers and health care providers and more!

CDSAs - Children’s Developmental Services Agencies
Local Children's Developmental Services Agencies (CDSAs) are available to help families, caregivers, and professionals serve children with special needs through our Infant Toddler Program.

NC Innovations Waiver
The Medicaid Innovations Waiver help Individuals with Intellectual or Developmental Disabilities (I/DD) live a more independent lifestyle.