2024-2025 Impact Report

The North Carolina Council on Developmental Disabilities (NCCDD), a 40-member body appointed by the Governor, is made up of:

• People with intellectual and/or other developmental disabilities (I/DD)
• Parent/Family member/Guardian
• Representatives of State agencies
• State legislators
• Representatives from Disability Rights NC and the Carolina Institute for Developmental Disabilities
• Provider and Local Management Entities/Managed Care Organization representatives (LME/MCO)

The Council represents people across North Carolina and is responsible for carrying out the provisions of the Developmental Disabilities Assistance and Bill of Rights Act (DD Act). Staff make sure the Council is a member-driven, effective, efficient, and accountable organization. Sixty percent of the Council’s members are people with intellectual or developmental disabilities (I/DD) or their family members. The rest are representatives from state agencies, nonprofits, and professional organizations. The Council directs all initiatives and contracts.

Learn more about the Council:

• NCCDD Council Members
• NCCDD Staff
• DD Network Partners

The Self-Advocate Discussion Series is a monthly webinar hosted by NCCDD’s Policy Education Coordinator, Chris Hendricks. The series aims to engage self-advocates by providing ways to build their advocacy skills and make connections with others who have similar experiences. Guest presenters cover topics such as transportation challenges, how to safely interact with police, and the importance of planning for the future. During each meeting, time is set aside for open discussion and to share stories. Meetings are recorded and posted on NCCDD’s YouTube page.

In June 2025, NCCDD launched a monthly webinar series, The Council Presents, for self-advocates, families, providers, policymakers, and community members. Each session features timely topics, expert insights, Council updates, and practical strategies to support people with I/DD. 

This year’s webinars covered the Work Together NC Employment Toolkit, accessing assistive technology services, emergency preparation and planning, and an ADA National Network presentation in Spanish introducing a new ADA Video Series for Spanish-speaking communities. All sessions are presented by experts on the topic being discussed.

Each November, NCCDD honors individuals whose work has advanced opportunities and access for people with I/DD with its annual Advocacy and Leadership Awards. The following award recipients for 2024 were: 

• Kerri Eaker Mountain Mover Award: Senator Jim Burgin and Department of Health and Human Services Secretary Kody Kinsley 
• North Carolina Leadership Achievement Award: Cheryl Powell
• Jack B. Hefner Memorial Award: Jessica Aguilar
• Helen C. “Holly” Riddle Distinguished Service Award: Pam Shipman

Learn more about the 2024 recipients.

NCCDD continued its My Story Matters campaign. The campaign encourages people with I/DD to submit their stories to give a first-person account of how cuts and changes to critical services would impact them. These stories are used to raise awareness among leaders, decision-makers, and the public of what’s at stake when policy doesn’t match what people need to live independently.

Also, NCCDD provided stories to the National Association of Councils on Developmental Disabilities (NACDD) for its Medicaid Matters campaign. The stories were added on NACDD’s website, and several were highlighted during the Medicaid Vigil held at the National Mall in Washington, D.C. in July 2025.

Unmet: North Carolina's Two Developmental Disability Crises is a film commissioned by NCCDD, sharing real stories of North Carolinians with I/DD whose needs are unmet. After several showings in theatres across North Carolina during 2023 and 2024, the film was released in July 2025 for the public to host watch parties with others within their community.

The watch parties intend to encourage people to watch the film together and engage in meaningful discussions on what happens when services and supports are missing or are not enough, and how this crisis might be solved.

“I feel that I'm fairly well versed in my advocacy for my family member, but I think the film helped me see that we're not a unicorn,” said one viewer. “I often read the numbers, but seeing the faces and hearing the stories was impactful, not just for me, but for my husband.” 

Learn more about hosting an Unmet Film showing.

NCCDD funded a pilot safety training in Buncombe County to improve interactions between first responders and people with I/DD and autism.

Led by Dustin Chandler of Interaction Advisory Group, 34 officers from 12 agencies learned communication and de-escalation skills through hands-on sessions with self-advocates. This initial year's work laid the groundwork for hundreds of officers to be trained in 2026. 

The training helped officers understand real experiences, build empathy, and identify safer alternatives during crises. With plans to expand statewide and online, the initiative aims to equip all first responders with tools to protect and connect with individuals with I/DD—making communities across North Carolina safer and more inclusive. 

Read more about this initiative: Training First Responders to Protect and Connect with the Autism and I/DD Community
 

NCCDD contracted with FIRSTwnc to complete the Supported Living: How-to Guidebook in FFY 2024. In FFY 2025, the guidebook was promoted widely to reach North Carolina’s I/DD community to provide step-by-step information for people with I/DD, family members, and provider agencies on how to make supported living work successfully. Designed to be easy to understand, it contains illustrations and information on topics such as learning how to self-direct services and identifying happiness triggers.

The Advocacy Leadership Program of North Carolina (ALP-NC) was created to address key gaps in leadership training for the I/DD community. ALP-NC is unique and groundbreaking because it ensures that people with I/DD are facilitators and coordinators in each cohort. The initiative brings together people with I/DD, family members, professionals, and other stakeholders to develop and use advocacy skills to speak for themselves and to build relationships with key decision makers and lawmakers on a local, state, and federal level.

ALP-NC Graduate Takes Action

In September 2025, Gov. Josh Stein contacted Chelsea Grey before holding a press conference about the negative impact of impending Medicaid cuts. She did not hesitate to drive across the state to join him for this important press conference so she could share how the cuts would affect her daughter, who has daily seizures and depends on Medicaid for treatment. She shared, “Every day is already uncertain. We are barely staying afloat with the funds that Medicaid currently has.” Chelsea is a 2024 graduate of ALP-NC and will be certified as a facilitator after her internship during the fall of 2025.

In April 2025, Winston-Salem State University (WSSU), through NCCDD’s HBCU IPSE Program initiative, began developing PILLAR, an inclusive postsecondary education (IPSE) program. As one of North Carolina’s 11 historically Black colleges and universities (HCBU), WSSU aims for PILLAR to dismantle systemic barriers and serve as a model for inclusion across HBCUs. The program expands culturally competent services and supports that promote independence, integration, and inclusion for students with intellectual disabilities. By fostering universal design and a more inclusive learning environment, WSSU seeks to enhance the college experience and create greater social connections for all students.

  Goal 1: Financial Asset Development

• Winston-Salem State University HBCU IPSE Program

  Goal 2: Community Living

• Autism and I/DD Safety Training for First Responders

  Goal 3: Advocacy Development

• Ability Leadership Project of NC (ALP NC)
• Unmet Film Project
• Self-Advocate Discussion Series

  Cross Cutting

• Media Relations Program
• Meet the Need NC