July 2025 Highlights and Hot Topics
Message from the Executive Director
Talley Wells, Executive Director, NCCDD
I feel like the boy who cried wolf.
Except . . . each time I cry wolf, there is a wolf. And, each wolf is worse than the last wolf.
The latest wolf is this: our developmental disability community faces major cuts to Medicaid and food benefits.
This is because the new federal law requires our state to pay more for Medicaid and food benefits. And, it is because North Carolina owes more for Medicaid this year even beyond the federal law.
It feels like we are in a real-life video game where we keep working through a level only to face a harder level. The Donkey Kong gorilla is throwing more barrels. The Pac-Man ghosts are getting faster.
Since 2020, below are just some of the levels we have had to work to overcome (and many of these obstacles continue to exist):
- Medicaid Transformation
- Covid-19
- Tailored Care Management
- Medicaid Expansion
- The 19,000 person Waiting List
- The Direct Support Professional Workforce (DSP) Shortage
- Hurricane Helene
- Federal Reductions in Medicaid and Food Benefits
Our family members and people with developmental disabilities feel these challenges more than most. Covid meant isolation, sickness, and death. The waiting list is like a fall from a cliff. While a person is in school, there are activities and community. Afterwards without the waiver, for many in our community, there is nothing. The workforce shortage is a similar cliff.
And now, while we continue to confront the waiting list and workforce shortage, we face cuts to Medicaid and food benefits. This could mean less services and more hunger.
We face a bigger wolf!
What hope can we give each other while we cry WOLF again?
That is a hard question. We have reached a really difficult level.
All I can say is we have had significant successes in fighting through each of the above obstacles. We built a strong community of developmental disability advocates. We obtained 1915(i), increased wages for DSPs, and Medicaid Expansion. Our advocacy at the General Assembly keeps growing. We have made friends with a lot of leaders. We have resilience.
We keep making progress against the wolves as a community of developmental disability advocates. Let’s take this next wolf on together again!
Talley Wells, NCCDD Executive Director
Public Policy Update (as of 7/24/25)
Read a summary of recent public policy updates that may be of interest to North Carolinians with intellectual and other developmental disabilities (I/DD). These updates are current as of July 24, 2025.
STATE
The North Carolina legislature adjourned without a budget and is not in session through the end of July. The fiscal year for North Carolina ended on June 30, 2025, so we are operating under a continuing resolution, which means the current FY2024-2025 budget “rolls over” into the new fiscal year FY2025-2026.
The legislature will convene for very short sessions over the next few months. These sessions may include overrides of bills the Governor has vetoed, bills related to appointments or confirmations, and simple resolutions.
Dates:
• July 29, 202, to July 31, 2025
• August 26, 2025 to August 28, 2025
• September 23, 2025 to September 25, 2025
• October 7, 2025
• October 28, 2025 to October 30, 2025
• November 5, 2025, with no adjournment date.
Committees or subcommittees may meet during the break between sessions.
Some bills that passed before adjournment and signed into law:
HB1012: Disaster Recovery Act of 2025 (SL2025-26): This bill provides additional money and extends some regulatory flexibilities for communities impacted by Hurricane Helene and wildfires.
HB 67 (Healthcare Workforce Reforms): This legislation enacts comprehensive healthcare workforce reforms in North Carolina. Of specific interest to the IDD community, this bill expands the qualifications for Associate Professional and Qualified Professional to include community college graduates with associate degrees in human services fields and appropriate experience.
FEDERAL UPDATE
Reconciliation: On July 4, President Trump signed the reconciliation bill (H.R.1) into law. This bill enacts the largest cuts to Medicaid in U.S. history. The Congressional Budget Office estimates that at least 16 million Americans will lose their health coverage because of this bill. Below are a few of the sections which may affect people with IDD.
SEC. 71107: Eligibility Redeterminations: Beginning January 1, 2027, States must perform eligibility redeterminations every 6 months—instead of the currently required annual redeterminations—for individuals enrolled in the Affordable Care Act (ACA) Medicaid expansion. While this provision is intended to focus on the ACA expansion population, complex eligibility criteria results in people with disabilities who receive home care services being enrolled in the expansion group. Direct care workers will be impacted by this provision given that nearly a third are enrolled in Medicaid. This requirement puts additional work on the already overwhelmed NC county Department of Social Services and other state agencies.
SEC. 71115: Provider Taxes: Though provider taxes are not generally utilized in HCBS space, the broader implications of provider tax restrictions will place serious pressure on overall state budgets, likely leading to states having to make difficult changes, including restrictions to eligibility for participants, such as HCBS waiting lists; amount and scope of services covered; and rate restrictions.
SEC. 71119: Requirement for States to Establish Medicaid Community Engagement Requirements for Certain Individuals: The Community Engagement Requirements, also known as Work Requirements, are the most significant policy within the legislation. It requires people to perform at least 80 hours of Community Engagement during a covered month. While people with disabilities are exempt from this requirement, the administrative burden will fall on individuals, as well as local and state agencies, to prove exemption or completion of the 80 hours. This will put additional pressure on our state Medicaid system.
SEC. 71120: Modifying Cost Sharing Requirements for Certain Expansion Individuals Under the Medicaid Program: Beginning October 1, 2028, this section requires states to impose cost sharing/co-pays on services delivered to individuals enrolled in the ACA expansion population with incomes above 100% of the federal poverty level. The cost-sharing amounts must be greater than $0 but no more than $35. While the number of people with IDD directly impacted by this provision may be limited, these types of requirements for uncollectible co-pays result in a rate reduction for providers.
SEC. 71121: Making Certain Adjustments to Coverage of Home or Community-Based Services Under Medicaid: This section allows states to create a new 1915(c) waiver, beginning July 1, 2028, that serves individuals who do not meet the institutional level of care typically required for these waivers. The clinical eligibility for these waivers uses a needs-based criteria similar to the eligibility requirements for 1915(i) State plan HCBS. Overall, this appears to be a positive provision that provides states with enhanced flexibility to serve individuals at lower levels of care.
Overall, over the next few years, this bill will force states to make challenging decisions. Without additional state funding, Medicaid spending will have to be reduced to account for the loss of Federal matching funds. This leads to the possibility of changes to eligibility, reduction in rates, elimination of some optional services, and other reductions. Advocacy on the state level will be important to protect access to home and community-based services (HCBS) and other optional services.
Fiscal Year 2026 Budget: While the focus has rightly been on the Reconciliation bill (HR 1) recently, Congress still needs to pass a government spending bill for the 2026 fiscal year. With government funding set to expire on September 30th, the appropriations committees in Congress are working to finalize government spending levels for the coming fiscal year.
As a reminder, the President’s FY 2026 budget proposal recommends eliminating discretionary funding for the University Centers for Excellence in Developmental Disabilities (UCEDDs) and consolidating UCEDD activities under the Independent Living program, alongside four other distinct national disability programs. This would dismantle a trusted, longstanding network that provides critical research, training, and services to individuals with developmental disabilities and their families in every state, including North Carolina.
The House Appropriations Committee’s Labor, Health and Human Services, and Education (LHHS) subcommittee has jurisdiction over funding for AUCD Network programs and other funding related to IDD. While some committees have completed their markups, Representative Robert Aderholt (R-AL), Chairman of the LHHS subcommittee, says he expects the funding bill will be marked up during the first week of September.
Members of Congress need to hear how important UCEDDs are in supporting people with disabilities to live, learn, work, and be a part of their communities.
Other Federal Actions
Subminimum Wage: The Department of Labor (DOL) has announced the withdrawal of its proposed rule to phase out 14c (subminimum wage) programs for workers with disabilities. The proposed Employment of Workers With Disabilities Under Section 14(c) of the Fair Labor Standards Act rule was published in December of 2024. With this most recent action, the Department is formally discontinuing the rulemaking process and removing that proposal from further consideration.
Department of Education: Elimination of positions at federal level continues. The Supreme Court ruled that the Trump Administration can carry out plans to dismantle the Department of Education including firing nearly 1400 employees. The Department enforces protections for students with disabilities and houses the Office of Special Education Programs (OSEP). OSEP distributes funds from the Individuals with Disabilities Education Act (IDEA) as approved by Congress, funds essential programs to inform parents and train teachers, monitors states to make sure they’re complying with IDEA and enforces consequences for noncompliance, and more. Eight million children in the U.S. are now served under IDEA. Students with disabilities, families, and educators will all likely be affected by these changes.
And there has been a freezing of federal dollars. The Trump administration announced an unprecedented nationwide halt on $6.8 billion in education funding Congress allocated in March.
NCCDD Needs Your Input: Attend a Listening Session in Your Community
The North Carolina Council on Developmental Disabilities (NCCDD) continues to collect public input for its next Five-Year State Plan (2027–2031). From now until the end of September, the Council will hold a series of Listening Sessions throughout the state and online.
Here’s where you can meet us in person to discuss what’s important to you! We’d like to hear your ideas on ways to improve services and supports for North Carolina’s intellectual and developmental disabilities (I/DD) community.
The first listening session was held in Lumberton in July. The following is the schedule of the remaining sessions.
August 4, 2025, from 1 to 3 p.m. - New Bern
Location: Craven County Community College, 800 College Court, New Bern, NC 28562
Registration link: Coming soon
August 14, 2025, from 6 to 7:30 p.m.
Raleigh (in-person and online)
Location: 131 Columbus Avenue, Cary, NC, 27518
Registration link: https://www.zoomgov.com/meeting/register/IUWrHbg4QEeKH-vcehbc_A
August 21, 2025, from 6 – 7:30 p.m. - Boone
Location: Appalachian State Lecture Room LLHS103, Beaver College of Health Sciences Levine Hall
Registration link: Coming soon
August 25, 2025, from 6 to 7:30 p.m. - Mecklenburg
Location: In-Reach Day Support Center, 520 Clanton Road, Suite A, Charlotte, NC, 28217
Registration link: https://forms.gle/2agvMnF6Mh7EHA8V6
August 26, 2025, from 10 to 11:30 a.m. - Mecklenburg
Location: BAYADA Home Health Care, 8801 J M Keynes Dr., Suite 350, Charlotte, NC 28262
Registration link: https://forms.gle/xisYxPwAsbFzayR69
August 27, 2025 from 1 p.m. to 3 p.m. - Williamston, NC
Location: Martin Community College, 1161 Kehukee Park Road, Building 1, Room 14
Registration link: https://forms.gle/8bfd1vRgYoRPiXU57
September 2, 2025 from 6 p.m. to 7:30 p.m. - Wiston-Salem, NC
Central Library Auditorium, 660 W. 5th St., Winston-Salem, NC, 277101
Registration link: https://forms.gle/PxsKVknb8kv7g1Mu8
September 16, 2025, from 6:30 to 8:00 p.m. Asheville
Location: Western MAHEC, 121 Hendersonville Road, Asheville, NC, 28803
Registration link: https://forms.gle/2RzocCnFAzHTspUq9
September 17, 2025, from 1 to 3 p.m. - NCCDD's Self-Advocate Discussion Series
Location: Virtual (ZoomGov)
Registration link: https://www.zoomgov.com/meeting/register/vJIscuqsqTIuHKmNsMe66wT4whwK0hPGVAM#/registration
September 30, 2025, from 6 to 7:30 p.m. - Statewide Virtual Public Input Session
Location: Virtual (ZoomGov)
Registration link: https://www.zoomgov.com/meeting/register/X8j7XU0YSp6_ccjAbZJwZA
Unable to Attend? Take Our Survey!
If you aren’t able to attend a Listening Session, you can share your thoughts by completing a survey. You can take the survey online or download a PDF or Word version to print and return by mail or email. Surveys are being accepted through September 30, 2025.
Survey in English: Online | PDF | Word
Survey in Spanish: Online | PDF | Word
For more information about the Five-Year Plan and public input, go to https://nccdd.org/the-council/five-year-plan.
Host Your Own "Unmet" Film Watch Party
"Unmet: North Carolina's Two Developmental Disability Crises" is a film sharing real stories of North Carolinians with intellectual or developmental disabilities (I/DD) and what happens when their needs are unmet.
The film, commissioned by the North Carolina Council on Developmental Disabilities (NCCDD), premiered in 2023 and was shown in different theaters across the state. Now NCCDD has made it available for you to host your own Unmet film viewing with your friends, family, and community!
The Council welcomes organizations, nonprofits, and individuals to host a watch party and have meaningful discussions, while sharing with NCCDD what you think about the Unmet crises. A link will be provided for you to view the film online.
Here's what you need to do to reserve the film:
- Complete a short online form to request a link to the film for your watch party.
- The form will be pending approval, and the person who has made the request will receive access to the film once approved by NCCDD.
- At the end of your screening, you are asked to complete a short survey.
We hope you’ll join NCCDD in raising awareness and helping create positive change for people with I/DD in North Carolina! Questions? Send an email to Info@nccdd.org.
Upcoming Webinars Hosted by NCCDD
The North Carolina Council on Developmental Disabilities (NCCDD) offers several monthly webinars to help you stay educated and informed. All meetings are free and open to the public. Stay informed and become involved in important conversations – there’s something for everyone in the I/DD community!
August Schedule
Policy Education Meeting
Thursday, August 14, 2025 from 11 a.m. to Noon
Learn about important updates about state and federal policies, budget developments, and other issues that affect people with intellectual and developmental disabilities (I/DD). There will also be time for questions and open discussion. Please note that NCCDD only provides public policy education. The Council does not lobby on specific legislation.
Register here: https://www.zoomgov.com/meeting/register/vJItdu-uqD8oHpxzFX9FiES_lSmk_8OP4r4#/registration
Self-Advocate Discussion Series: Assistive Technology
Wednesday, August 20, 2025 from 1 p.m. - 2 p.m.
The North Carolina Assistive Technology Program (NCATP) is a state and federally funded program that provides assistive technology services statewide to people of all ages and abilities that promotes independence for people with disabilities through access to technology. NCATP will share about its efforts to carry out the federal Assistive Technology Act of 2004 by providing device demonstration, short-term device loans, and reutilization of assistive technology. As always, there will be time for discussion from the audience.
Register here: https://www.zoomgov.com/meeting/register/vJIscuqsqTIuHKmNsMe66wT4whwK0hPGVAM#/registration
The Council Presents
Thursday, August 28, 2025 from 1 p.m. to 2 p.m.
June through November is hurricane season, and September is National Preparedness Month. In this session, you will learn tips and strategies for people with I/DD or any type of access or functional needs to be prepared for any emergency that could happen, including tropical storms and hurricanes. Learn how to include everyone in the planning so that nobody is left behind or is unprepared for the next severe weather event or other emergency.
Presenters are 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).
Register here: https://www.zoomgov.com/meeting/register/3IH21vtqTE2R5A5GeI3hXw#
¡Muy pronto!
Newsletter in Accessible Audio
Coming soon!