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 North Carolina Council on Developmental Disabilities (NCCDD) works to share information that helps people with intellectual or developmental disabilities (I/DD), their families, and leaders understand important issues. NCCDD supports policies that help people with I/DD be included in their communities and connect with the people who support them.

Each year, NCCDD determines public policy priorities for its policy education efforts. For 2025, the priorities were:

	Eliminate the Waiting List for I/DD Medicaid waivers within 8 years to meet the needs of everyone on the 18,700+ person waiting list.
	Increase Direct Support Professional (DSP) rates in order to ensure a sufficient direct care workforce.
	Expand housing and transportation options for people with I/DD in North Carolina that are integrated, affordable, and accessible.
	Increase Competitive Integrated Employment (CIE) opportunities for all individuals with I/DD.
	Ensure success of new I/DD services that are home and community based by continually improving implementation of the Tailored Plans, care management, 1915(i), and expanded Medicaid.

Every second Thursday, NCCDD holds a monthly Policy Education Meeting via Zoom. Referred to as Capitol and Community, the meetings provide an opportunity for people with I/DD, family members, and leaders to engage in a one-hour and a half-long discussion on key policy issues impacting the I/DD community. 

During this fiscal year, 10 meetings were held with 571 total attendees for the year. The largest attendance happened in June during the height of the federal budget resolution bill, the One Big Beautiful Bill Act, which outlined major changes to Medicaid. The bill was signed into law on July 4, 2025. 

Additionally, each month, NCCDD also provides a monthly Public Policy Update article on its Public Policy Blog, highlighting recent updates, bills to watch, and other announcements.

During the fiscal year, NCCDD worked to educate community members on how to get 1915i services for people with I/DD. In 2025:

• 11,251 people received 1915i services across the state. 
• An additional 1,702 people were approved for 1915i services.
• The North Carolina Department of Health and Human Services reports that the Innovations Waiver waiting list is 18,950 people, with 7,492 of those individuals receiving some other services. 
• There are 14,736 total waiver slots.

On April 15, 2025, NCCDD held a community listening session in Wilmington, NC. The event featured guest presenters and gave time for people with intellectual and developmental disabilities (I/DD), their families, advocates, and community leaders to share their ideas and concerns about making North Carolina more inclusive for everyone. People talked about what is working and what still needs to improve in education, independent living, and employment. 

Presenters included Judge J.H. Corpening; Curtis Hill, Disability Rights NC; Gloria Garton, Executive Director of the North Carolina Statewide Independent Living Council; Rev. Dr. Charlrean Mapson, NCCDD Council Member; Ryan Wennerlind, Director, Inclusive Futures Program, UNC-Wilmington; and Ginger Yarbrough, Clinical Director, Developmental Disabilities, Div. MHDDSUS, NC DHHS.

Read more: Community Voices Shape Future of Disability Policy at NCCDD Listening Session in Wilmington

There are 18,950 people on the waiting list for the Innovations Waiver in North Carolina. Some have been waiting for over 10 years. A big problem is the lack of clear, complete, and consistent data. Without good data, it's hard to make strong policies or advocate for better services.

To help fix this, the North Carolina Council on Developmental Disabilities (NCCDD) worked with Duke University to research and publish a report about the needs and services for people with intellectual and developmental disabilities (I/DD) in the state.

One key finding from the report is that between 2013 and 2024, the waiting list for the Innovations Waiver nearly doubled—while the number of waiver slots only grew by 16%. For example, in 2014, there were 12,488 waiver slots and 9,278 people waiting. By 2024, there were 14,488 slots and 17,902 people waiting. As of September 2025, the waitlist has grown to 18,950 people.

The report looked at major problems with data and services for people with I/DD in North Carolina. To better understand the situation, the Duke team talked with over 45 experts and collected data from across the state and country. They focused on four main areas:

• The history of Innovations Waiver slots
  
  
• The number of beds in institutions and care facilities
  
  
• Data from other Medicaid programs (CAP/DA and CAP/C)
  
  
• Economic data related to I/DD
  
  

The report found big gaps in what we know. Many people with I/DD don’t get formal services, so they aren’t counted in public data. Also, different agencies use different terms and systems, which makes it hard to get a full picture.

To fix these problems, the report makes four main recommendations:

1. Use “Whole Person Care” systems so data is easier to compare and understand.
   
   
2. Use more types of data to include everyone with I/DD, even those not getting services.
   
   
3. Use the same terms across all agencies.
   
   
4. Focus on research that is driven by the community and solves real problems.
   
   

The report makes it clear: better data can lead to better decisions, more access to services, and stronger advocacy. Creating a central dashboard, using clearer terms, and including more voices will help North Carolina better serve people with I/DD and their families.

Read the report: I/DD Data Initiative: An Inventory of I/DD Data and Recommendations to Improve Advocacy Efforts

NC does not provide enough support to people with disabilities, families tell legislators: https://ncnewsline.com/2025/03/27/nc-does-not-provide-enough-support-to-people-with-disabilities-families-tell-legislators/ (ED Talley Wells attended)

Medicaid Innovations waiver can be the difference between thriving and dying: https://www.carolinajournal.com/opinion/medicaid-innovations-waiver-can-be-difference-between-thriving-and-dying/ (oped written by Council Chair Jon D’Angelo)

Self-advocacy is important for people with disabilities because it helps them speak up for their rights, needs, and choices. This leads to more independence, a better quality of life, and a stronger voice in their communities. NCCDD provides several opportunities for people with I/DD, their families, and supporters to help raise their voices and create change.

12 sessions held with 554 participants

“Relationships are the foundation of advocacy. Advocacy can start anywhere at any time.”
- Emmanuel Jenkins (participant from the Organized Advocacy session held in March 2025)

The Self-Advocate Discussion Series, a monthly webinar, is 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.

4 sessions held

Nearly 250 people attended all 4 webinars

The Jean Wolff-Rossi Fund for Participant Involvement (Rossi Fund) helps people with I/DD and their families take part in decisions that affect their lives. It offers reimbursement for certain costs to attend seminars and conferences that build knowledge, connections, and advocacy skills.

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.

Telling stories is a powerful way to advocate. NCCDD’s My Story Matters campaign, originally launched in 2024, 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 individuals and families. These stories are used to raise awareness among leaders, decision-makers, and the public and, more importantly, to offer a deeper understanding of what’s at stake when policy doesn’t match what people need to live independently. 

During this fiscal year, NCCDD provided stories to the National Association of Councils on Developmental Disabilities (NACDD) for its Medicaid Matters campaign. The stories were added to NACDD’s website, and several were highlighted, along with stories from other states, during the Medicaid Vigil hosted by Caring Across Generates held during the last week of 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 ideas are 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.” 

Another caregiver’s response to the video was, “I will make a difference, raise awareness, and reach out to state representatives.”

Learn more about hosting an Unmet Film showing.

45 requests received

19 viewing parties hosted

644 participants, 102 identified as a person with I/DD or a family member

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.

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.

Learn more about this initiative: https://nccdd.org/initiatives-funding/current-initiatives/autism-and-i-dd-safety-training-for-first-responders

Read an article about this initiative: https://nccdd.org/news-media/highlights-hot-topics/august-2025-highlights-and-hot-topics#article_4

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 intellectual and developmental disabilities (I/DD) community. Traditional policy-based advocacy leadership programs are expensive, hard to track for long-term results, and often face barriers to staying connected with participants over time.

Currently, there are no programs where people with I/DD, parents, professionals, and other stakeholders train together to learn advocacy skills in North Carolina. In addition, people with I/DD are rarely given the chance to serve as facilitators or coordinators in these programs—especially when the training is aimed at professionals.

ALP-NC changes this by bringing all these groups into the same training space and creating opportunities for individuals with I/DD to lead. Graduates of ALP-NC will develop the skills needed to advocate for themselves and others—such as speaking with policymakers, giving testimony, and influencing decisions—at the local, state, and federal levels to drive real systems change.

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.  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 Winston-Salem State University 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

• NC Advocacy Leaders Network Collaborative
• Unmet Film Project
• Self-Advocate Discussion Series

  Cross Cutting

• Media Relations Program
• Meet the Need NC

During 2025, NCCDD began planning for its next Five-Year State Plan for 2017-2031. This strategic plan, required by the federal DD Act, outlines goals, activities, and initiatives the Council will fund to ensure self-determination, independence, productivity, integration, and inclusion for North Carolinians with I/DD and their families. 

The most important part of this process is to gather public input. A comprehensive survey, offered in English and Spanish, was launched in April. Public Input Sessions were held from July through September. Sessions were held in-person across North Carolina, along with two virtual sessions. These opportunities allowed self-advocates, families, and stakeholders to share what matters most to them. 

The Council will now review the community feedback from the surveys and public input sessions to determine what its next Five-Year State Plan will include.

After the devastating impact of Hurricane Helene on Western North Carolina, NCCDD held daily virtual meetings for the first two weeks after Hurricane Helene, focusing on the needs of the disability community impacted by the hurricane. 423 total attendees participated in the meetings, which included individuals with disabilities, family members, North Carolina Emergency Management, emergency responders, Federal Emergency Management Agency (FEMA), and NC Department of Health and Human Services (NC DHHS). NCCDD continued to participate and support daily meetings that were hosted by NC Emergency Management and NC DHHS. 

The Council shared information alerts via email, social media, newsletter, and website. The Council’s advocacy, along with the advocacy of many others, helped ensure all individuals with intellectual or other developmental disabilities (I/DD) receiving services were contacted to respond to their needs. 

Since then, NCCDD created a small project to collect stories from individuals with I/DD and families impacted by Hurricane Helene. These stories will be used to develop a report on ways to better prepare for future natural disasters.

This year, proactively shared information on preparing for an emergency at the beginning of the hurricane season. And in August, “The Council Presents” monthly webinar was about Emergency Preparedness. Presenters included Sheri Badger, Senior Communications Specialist-Public Information Officer, King County (Washington State) Office of Emergency Management; former Disability Integration Specialist, North Carolina Emergency Management; and Lauren Howard, Director, North Carolina Office on Disability and Health in the North Carolina Department of Health and Human Services (NC DHHS).

“In September, two days after Helene hit the state, NCCDD mobilized daily calls with emergency responders, disability leaders, state and federal emergency leaders, impacted communities, and disability providers focused on the safety and welfare of the disability community across western North Carolina. The Council’s work led to outreach to every person with a disability in the Tailored Plans across western North Carolina. This work saved lives.” - Matt and Sara Potter (April 2025)

NCCDD shares news and updates with people in North Carolina’s I/DD community through its website, emails, social media, and news stories. This includes information about NCCDD projects, important I/DD news from other groups, and special campaigns like My Story Matters or public input sessions.

Website

In August, NCCDD launched a new and improved website. The updated site makes it easier for visitors to find resources, events, and Council news. It also works better on phones and tablets and meets accessibility standards. All content was reviewed to be clear and easy to understand. During this fiscal year, 

• Website was visited 35,409 times and experienced a 5.5% increase in returning users. 

Email Marketing

• 140 emails sent in FFY2025 to over 7,000 subscribers to NCCDD’s email list

Social Media

NCCDD is active on social media through its Facebook and Instagram pages, along with a YouTube channel.  

• Growth stats for the fiscal year

Media Mentions

• 16 mentions
• 19 million, unique views
• $1,800 in publicity value

*For the Period of October 1, 2024 – September 30, 2025