Update on Medicaid Cuts in North Carolina - 10/13/25

Message from Talley Wells, Executive Director of the North Carolina Council on Developmental Disabilities

Written October 13, 2025 

I am writing to you to update you on the Medicaid cuts. The cuts are still in effect. Thus, it is still critical to reach out to state legislators and the Governor with your experiences and opinion about the Medicaid cuts.

Below you’ll find information that may be helpful as you continue to educate and inform.

While the Medicaid cuts went into effect on October 1st, our community may be feeling those cuts at different times. For those who receive services through an LME/MCO (Trillium Vaya, Alliance, or Partners), the LME/MCOs may not implement cuts until November 1st. For other services, including CAP-DA and CAP-C, cuts began on October 1st.

Medicaid cuts are not just financial; they are personal. We want to hear how the Medicaid cuts are impacting you or what you are hearing about what the impact will be. If you haven’t already, you can fill out our survey here and please share it with others. This feedback has been instrumental in educating legislators and the Governor on the true impact.

Upcoming Key Medicaid Hearings

There will be a Legislative Oversight Committee on Medicaid at the General Assembly on Tuesday, October 14th at 9 am. You can go here for information on how to attend.

There will also be a Legislative Oversight Committee on Health and Human Services on Tuesday, October 14th at 1:30 pm. You can go here for more information on how to attend. If you plan to go to one or both hearings, arrive outside the hearing room at least 30 minutes early as there is a good chance the room will fill to capacity.

The General Assembly is scheduled to meet on October 20th. It is unclear whether both the Senate and House will be there on the 20th or on the 21st. If the legislature meets on one or both of those days, then advocates and providers will probably gather at the General Assembly for a Legislative Day focused on the Medicaid cuts. We will let you know as soon as we confirm the day. You can also go to this website for the latest updates on the legislative calendar.

It would be great to have people with disabilities and family members attend when the legislature is in session. If you go, you should also try to arrange an appointment with your STATE Representative and your STATE Senator (not your U.S. Representative or Senator). You can .

Given tight schedules, you may also meet with a staff member. Meeting with staff can be a great opportunity as well — often they have more time and can relay information in meaningful ways. If you cannot go, you could email your legislator to ask for a virtual meeting or you can send an email to your legislator. There is no wrong way to share your story.

Please let us know if you are planning to go to the legislature for any of the days above by email us at This email address is being protected from spambots. You need JavaScript enabled to view it. so we can let you know any additional information we may have to share.

If you talk to your legislator or email your legislator, I recommend doing the following:

1. Be respectful and grateful to your legislator for serving your district or the state. We know many people are feeling scared and angry. Help the legislator and his/her staff hear your story by maintaining a respectful dialogue.
2. Tell the story in a couple sentences of you or your loved one with a disability. What Medicaid services do you or your loved one receive and why is it important?
3. Tell your legislator how you are impacted by the Medicaid cuts or what you expect will happen. You can also share some of the results from our Impact of Medicaid cuts survey below.
4. Tell your legislator what you would like them to do about the Medicaid cuts.
5. Thank your legislator for taking the time to hear/read your story. Leave the door open for future discussions and getting to know your legislator is really important. Follow up with a thank you email.

Results from NCCDD Medicaid Cuts Survey

NCCDD received 272 responses to our Medicaid Cuts Survey. [You can still respond to the survey here]. This survey was conducted from October 1st to the present. Below is a summary of the results. Please note that this survey explains what individuals with disabilities, families, and providers say is happening or expect to happen.

These statements have not been verified for accuracy except in one instance. This summary was created with Microsoft CoPilot.

Summary: Impact of Medicaid Cuts on Individuals with Disabilities, Families, DSPs, and Providers

Introduction

The recent Medicaid cuts in North Carolina have triggered widespread concern and hardship across the disability community. This summary synthesizes hundreds of firsthand accounts from individuals with disabilities, their families, direct support professionals (DSPs), and provider agencies.

1. Financial Strain on Families and Caregivers

Loss of Income

Many caregivers, especially parents acting as paid caregivers under CAP/C or Innovations Waiver programs, reported immediate pay cuts—typically 3% to 8%. For families already living paycheck to paycheck, this reduction is devastating. Some caregivers have lost their paid caregiver status entirely, forcing them to choose between working outside the home or continuing to provide essential care without compensation.

“I am my child’s paid caregiver and as of today I will be taking a pay cut. Any pay cut will affect our ability to find caregivers, which is already difficult.”

Increased Out-of-Pocket Costs

Families are now covering costs for:

• Medications no longer covered by Medicaid*
  • *Note NC DHHS says medications have not been impacted by Medicaid cuts except access for some to GLP-1 drugs
• Medical supplies (e.g., feeding tubes, incontinence products)
• Transportation to distant providers due to local shortages
• Therapies previously reimbursed

“We now have to pay out of pocket for needles to administer my daughter’s daily injections. Without them, her Crohn’s disease could become life-threatening.”

2. Workforce Crisis Among Direct Support Professionals (DSPs)

Wage Reductions and Burnout

DSPs, already underpaid, are facing wage cuts that make it impossible to sustain their roles. Many are leaving the field for better-paying jobs in retail or fast food. This turnover disrupts continuity of care and places emotional and logistical strain on families.

“Our DSPs finally received livable wages in 2024, and now you want to cut. How are we expected to retain quality workers?”

Staffing Shortages

The shortage of qualified DSPs has worsened. Families report being unable to find replacements, leading to gaps in care, missed therapies, and increased caregiver burnout.

“We’ve been understaffed for five years. Now, with pay cuts, even our most dedicated DSPs are leaving.”

3. Disruption of Services and Supports

Therapies and Medical Services

Cuts have led to:

• Reduced hours for occupational, physical, and speech therapy
• Denials for previously approved services
• Fewer providers accepting Medicaid

“Our daughter’s therapy clinic had to stop accepting Medicaid. It’s one of only two in our area qualified to treat her.”

Community and Day Programs

Day programs, vocational centers, and community networking services are scaling back or closing due to funding losses. This isolates individuals with disabilities and undermines their progress toward independence.

“We’re looking at selling our thrift store, which is a vital part of our day program. Without it, our clients lose their connection to the community.”

4. Threats to Health and Safety

Medical Risks

Several families reported losing access to life-sustaining medications or equipment. Others fear that cuts will lead to more hospitalizations, which are costlier and more traumatic.

“My daughter’s seizure medication was discontinued. Her group home can’t afford to pay for it. We’re terrified.”

Institutionalization Fears

Families worry that without adequate in-home support, their loved ones may be forced into institutional care—contrary to the goals of community-based living.

“If I lose my employees, my son may have to go into a nursing home. That would cost the state more and devastate our family.”

5. Emotional and Mental Health Toll

Stress and Uncertainty

The lack of clear communication from Medicaid, MCOs, and provider agencies has left families in limbo. Many don’t know how or when they’ll be affected, which adds to their anxiety.

“Nobody can tell me how we’ll be impacted. The uncertainty is exhausting.”

Loss of Trust

Families and providers feel betrayed after years of building systems of care. The sudden reversal of funding increases from 2023 has eroded trust in state leadership.

“We were required to raise DSP wages last year. Now we’re being forced to cut them. It’s a slap in the face.”

6. Provider Agencies in Crisis

Budget Shortfalls

Agencies report losing hundreds of thousands of dollars due to rate cuts. Some are considering layoffs, property sales, or program closures.

“We’re a nonprofit. We can’t cut staff pay, so we’re losing thousands monthly. This isn’t sustainable.”

Recruitment and Retention Challenges

Lower reimbursement rates make it nearly impossible to attract or retain qualified staff. This is especially true in rural areas, where provider options are already limited.

“We’ve lost therapists, nurses, and DSPs. We can’t compete with other industries.”

7. Systemic Inequities and Policy Failures

Tailored Plan Discrimination

Families report that the Tailored Plan model limits provider choice and access to specialists, especially for individuals with IDD.

“The system is set up to discriminate against people with developmental disabilities. There are hardly any choices.”

Lack of Transparency

Providers and families alike criticize the lack of clear guidance from the state and MCOs. Many learned about cuts only after they took effect.

“We were told cuts wouldn’t happen until November. Then our fiscal agent cut pay on October 1 without notice.”

8. Advocacy and Urgent Appeals

Calls for Reinvestment

Respondents urge lawmakers to reconsider the cuts, emphasizing that community-based care is both more humane and more cost-effective than institutionalization.

“Investing in community supports prevents crises, reduces hospitalizations, and promotes independence.”

Moral Responsibility

Many framed the issue as a moral failing—punishing the most vulnerable while other areas of government spending remain untouched.

“Why are we cutting services for people with disabilities while funding waste elsewhere? This is unconscionable.”

Conclusion

The Medicaid cuts in North Carolina have triggered a cascading crisis across the disability support system. Families are losing income, caregivers are leaving, services are being denied, and provider agencies are on the brink. The emotional toll is immense, and the long-term consequences—both human and financial—could be catastrophic.

This summary reflects a collective plea: protect the services that allow people with disabilities to live with dignity, safety, and purpose. The cost of inaction is far greater than the cost of care.