The North Carolina Council on Developmental Disabilities is pleased to release critical data related to intellectual and developmental disabilities (I/DD) in North Carolina from the Duke-Margolis Institute for Health Policy. "The I/DD Data Initiative: An Inventory of I/DD Data and Recommendations to Improve Advocacy Efforts” provides the best and most extensive data picture of the needs, services, and service gaps for the I/DD community.

“We are thrilled with this report,” said NCCDD Executive Director Talley Wells. “Making sure we have the data to be able to understand what are the needs and service gaps of our community has been one of the highest priorities of I/DD advocates. What is particularly exciting about this report is that it coincides with a renaissance of new I/DD data that is becoming available from the North Carolina Department of Health and Human Services through its Inclusion Connects initiative.”

One of the key parts of this report is that it shows a history of the Innovations Waiver from 2013 to 2024 demonstrating that the waiting list has grown by almost 100% while new waiver slots have only grown by 16%. Specifically, the number of I/DD home and community-based services (HCBS) Waivers in North Carolina in 2014 were 12,488, and the number of people on the waiting list was 9,278. The number of I/DD Waivers in 2024 was 14,488, and the waiting list grew to 17,902 in 2024. Now (February 2025) the waiting list has grown to 18,469.

The report is filled with critical data and worth a read from start to finish. Special thanks to Michelle Scotton Franklin, PhD, APRN, Akhilesh Shivaramakrishnan, Alexis French, PhD, and Dr. Gary R. Maslow for their extraordinary work on this report. NCCDD is also grateful for all of the I/DD advocates, North Carolina Department of Health and Human Services policy leaders, and colleagues at Disability Rights North Carolina who supported this effort.