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2024-2025 Impact Report

Banner of the 2024-2025 Impact Report, titled 'Building and Advocating for North Carolina's I/DD Community.' The design includes images of people interacting in various settings, along with a person holding a document at a meeting.

Each year, the North Carolina Council on Developmental Disabilities (NCCDD) publishes an impact report summarizing the Council's activities during the federal fiscal year (FFY). The report includes highlights of initiatives funded by NCCDD, along with updates on other activities accomplished by NCCDD and its governor-appointed Council. We are pleased to present to you our Annual Impact Report for FFY October 1, 2024 through September 30, 2025.

  • A Message From The Council

    Screenshot 2025 10 16 at 12.05.52 PM

    About The Council

    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:

  • Growing Voices Through Policy Education

    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.

    Click on the + symbol to the right of the section heading to view the section’s content.

    NCCDD's Public Policy Priorities

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

    A graphic stating "Eliminate the Waiting List for IDD Medicaid waivers within 9 years to meet the needs of everyone on the 18,700+ person waiting list," featuring a prohibition symbol.

    A graphic stating "Increase Direct Support Professional (DSP) rates in order to ensure a sufficient direct care workforce," with a symbol representing direct support professionals.

    A blue banner with a house icon. Text reads: "Expand housing and transportation options for people with I/DD in North Carolina that are integrated, affordable, and accessible."

    A yellow banner featuring a person in a wheelchair with a briefcase icon. Text states: "Increase Competitive Integrated Employment (CIE) opportunities for all individuals with I/DD."

    A blue banner with play, work, and live icons. Text states: "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."

     

     

    Connecting Capitol & Community: Policy Education

    Every second Thursday of the month, NCCDD holds a Policy Education Meeting via Zoom. The meetings provide an opportunity for people with I/DD, family members, and leaders to engage in 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 was in June during the height of the federal budget resolution bill, called the One Big Beautiful Bill Act, that outlined major changes to Medicaid. The bill was signed into law on July 4, 2025. 

    NCCDD also provided regular updates to its Public Policy Blog, highlighting recent updates, bills to watch, and other announcements. 

    Infographic showing 2025 NCCDD data: 11,251 people received 1915i services, 1,702 were approved, 18,950 are on the Innovations Waiver waiting list (7,492 receiving other services), and 14,736 waiver slots remain.

    Wilmington Listening Session Brings Together Leaders and Advocates to Strengthen Disability Inclusion

    A conference setting featuring a panel of speakers at tables equipped with microphones and laptops. In the foreground, an audience is seated, facing a woman in a white dress speaking into a microphone. The backdrop displays a presentation screen with images. The environment appears professional, with a neutral color scheme and branding visible on the walls.

    On April 15, 2025, NCCDD held a community listening session in Wilmington, NC. The event featured guest presenters and gave time for people with 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

    Collaboration with Duke University Advances Comprehensive I/DD Data and Policy Insights

    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

  • Engaging and Empowering Advocates

    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.

    Click on the + symbol to the right of the section heading to view the section’s content.

    Self-Advocate Discussion Series

    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.

    An information panel highlighting that 12 sessions were held with 554 participants. It includes a quote from Emmanuel Jenkins discussing the importance of relationships in advocacy, emphasizing that advocacy can begin at any time.

    The Council Presents Webinars

    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.

    A graphic showing that 4 sessions were conducted with approximately 250 attendees. The design features a visual representation of people in a grid layout to depict the sessions and attendees.

    Advocacy & Leadership Awards

    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.

    A photo featuring five professional individuals at an awards ceremony. They are posing together, dressed in formal attire, with a backdrop displaying the NCCCD logo, suggesting a celebration of achievement within the organization.

    Storytelling Makes a Difference

    A grid of portraits showcasing a diverse group of people, including individuals with disabilities, smiling and engaging in various activities. The collage features both close-up shots and group photos, emphasizing community and connection.

    Telling your story 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. Leaders, decision-makers, and the public are encouraged to read these stories to get 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 are featured on NACDD’s website and were shared in July 2025 during the Medicaid Vigil hosted by Caring Across Generates.

    Unmet Film Showing Parties

    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. Several showings were held during 2023-2024, and in 2025, the film was offered for the public to host watch parties with others within their community. 

    The watch parties 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. Conversations lead to ideas on how this crisis might be solved, leading to stronger advocacy.

    “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.

    An infographic displaying key statistics: 45 requests received, 19 viewing parties hosted, and 644 participants engaged. The icons include a hand for requests, a video play symbol for viewing parties, and a group of people for participants.

  • Creating Positive Change Through Our Initiatives

    Through its Five-Year State Plan, NCCDD supports initiatives that help people with I/DD live better lives. These projects focus on building advocacy skills, supporting community living, and helping people become more financially independent. The goal is to give people with I/DD the supports and services they need to live full, meaningful lives.

    Click on the + symbol to the right of the section heading to view the section’s content.

    Training First Responders to Protect and Connect with the Autism and I/DD Community

    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.

    FFY 2025
    1 training was held for 34 law enforcement officers/cadets received training.

    2 people with I/DD provided assistance during the training.

    FFY 2026
    2 trainings are planned in Guilford County and Raleigh

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

    Supported Living Guidebook Promotes Choice

    Top Left: A young woman with curly hair is smiling and holding a purple wallet while standing in front of various wooden crafts. Top Right: Two women are engaged in a conversation outdoors; one is wearing a wide-brimmed hat and sunglasses, while the other is dressed in a bright yellow top. Bottom: Two men pose for a photo together, one wearing a blue blazer and the other in a blue shirt, smiling warmly in a casual dining setting.
    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.

    Ability Leadership Project of North Carolina Prepares Advocates to Become Leaders

    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. 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.

    Strengthening Inclusive Education within North Carolina’s HBCU Community

    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.

    List of All of Current Initiatives

    Goal1  Goal 1: Financial Asset Development

    Goal2  Goal 2: Community Living

    Goal3  Goal 3: Advocacy Development

    cross cutting  Cross Cutting

  • Planning For Future Initiatives

    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.

    A diagram displaying a network map of services in the Asheville area. It includes labeled points for various community services, financial resources, housing assistance, and other support networks. Key icons represent assistance for individuals and families, with connecting lines illustrating the relationships between different resources and locations in Asheville. Icons indicate a variety of services available, including financial support and housing options.

  • NCCDD's Response During Hurricane Helene Aftermath

    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).

  • Media Mentions and Outreach

    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,  

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

    Email Marketing

    • 140 emails sent in FFY 2025 to over 7,000 subscribers to NCCDD’s email list.

    Social Media

    NCCDD is active on social media through its Facebook, Instagram, and YouTube. All social media channels are active, with nearly 5,000 followers combined across all channels.  

    Media Mentions

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

  • Budget for FFY October 1, 2024 - September 30, 2025

     FFY Budget 2024-2025  $ 2,167,690
     *Expenses to Date  $ ??????
     FFY 2023 Balance  $?????

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

     BUDGET  AMOUNT
     Goal 1: Financial Asset Development  $446,728.84  (21%)
     Goal 2: Community Living  $679,465.25 (31%)
     Goal 3: Advocacy Development  $441,728.61 (20%)
     Cross-Cutting Functions  $????
     Operations & Administration  $599,767.30 (28%)
     TOTAL BUDGET  $2,167,690.00  (100%)

The 2024 - 2025 Impact Report is also available as a PDF download in English and Spanish.

Cover of the 2024-2025 Impact Report by the North Carolina Council on Developmental Disabilities. The title reads 'Building and Advocating for North Carolina's I/DD Community,' featuring a collage of images including a person speaking at a podium and individuals engaged in discussions.

Download the
English Version

     NCCDD 2024 Impact Report cover in Spanish

Download the 
Spanish Version

This project is supported by grant number 2401NCSCDD ($2,162,660.00), which is 100% federal funding, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by ACL/HHS, or the U.S. Government.