January 2026 Highlights and Hot Topics

The January 2026 issue of Highlights and Hot Topics includes a reflection article from NCCDD’s executive director, an introduction to the newest NCCDD council members, a public policy update, and upcoming webinars hosted by NCCDD.

• Letter from the Executive Director
• NCCDD Welcomes New Council Members
• Public Policy Updates (as of 1/19/26)
• Upcoming NCCDD Webinars in January
• Boletín en español
• Newsletter in Accessible Audio

Message from the Executive Director: 

Did you make a New Year’s resolution?

My resolution is to find positives and reasons for optimism in what I expect to be another challenging year.

I expect the upcoming year to be another tough one because Medicaid will continue to have lots of financial pressures at both the state and federal levels. This will likely add strains to our waiting list and workforce shortage.

How can we flip these challenges into opportunities?

That was the question a colleague and I struggled with as we thought about this coming year’s policy agenda. We decided that the North Carolina Council on Developmental Disabilities (NCCDD) cannot only play defense, but we also have to figure out ways we can build a better system. We are considering focusing on both (1) protecting and (2) strengthening intellectual and other developmental disability (I/DD) services through Medicaid. We want to not only preserve the services and supports that people with I/DD receive through Medicaid, but also build on those supports and services to make them better.

My colleague reminded me about the last time Medicaid faced a major threat. At that time, advocates were able to use the threat of Medicaid as a time to educate leaders and the community about the critical value of Medicaid. They used that challenging time to make new friends, partners, and allies.

How can we do that this year?

I also want to find ways to enjoy being with the I/DD community. Yes, we have to advocate and times will be challenging, but we also should find ways to celebrate the diverse gifts of individuals and families in our community. We should find ways to have more fun. We should spend more time together doing things together that make a difference rather than just focusing on the struggles we encounter.

If you don’t have a New Year’s resolution yet, I hope you will join me in sharing positives, reasons for optimism, and fun throughout 2026!

Talley Wells, NCCDD Executive Director 

NCCDD Welcomes New Council Members

The North Carolina Council on Developmental Disabilities (NCCDD) is excited to welcome several new council members: Demi Eckoff, Mary Grillo, Kimberly Hernandez, and Kenneth Kelty. Appointed by Governor Josh Stein, Council members are responsible for carrying out the provisions of the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) by making sure that the Council is member-driven, effective, efficient, and accountable. Council members approve NCCDD’s Five-Year State Plan and guide all initiatives and contracts of that plan.

Demi Eckoff

Eckoff’s top priority is making sure people with disabilities have access to essential services and affordable housing. She has a rare form of congenital muscular dystrophy and has been a self-advocate from a young age. Her personal experience has shaped her lifelong commitment to disability advocacy.

“My disability has shaped my life and my perspective,” Eckoff says. “I have been involved at the legislative level in a few states and have fought for the services I receive. My goal is to advocate to create laws for individuals with I/DD to be able to move state to state and still receive independent living waivers.”

Eckoff, who lives in Durham, earned a master’s degree in public health from the University of North Carolina (UNC) at Chapel Hill and will begin pursuing a Doctor of Public Health in health equity and social justice at Johns Hopkins University this fall. While at UNC, she served as a fellow in the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program.

“I believe that as a Council member, we can work together to advocate for and formulate legislative action to improve the current plights of a North Carolinian living with I/DD,” said Eckoff. “As a public health professional, I believe in taking the macro-level approach, which starts at the legislative level. Additionally, it is imperative that there is a larger presence of people with I/DD and their families and caregivers in power in North Carolina. It is vital to expand housing that is I/DD accessible, safe, and affordable.”

Mary Grillo

Mary Grillo of Wake County represents the Department of Adult Correction where is the Director of Social Work. She oversees specialized aftercare planning to enhance services for individuals who are incarcerated and living with mental illnesses, I/DD, and complex medical issues. Grillo has worked in behavioral health and in criminal justice settings for more than 20 years.

Kimberly Hernandez

Hernandez, a peer mentor for Chatham Trades who lives in Siler City, believes that support and guidance are crucial for ensuring the well-being of individuals with disabilities. Another critical part of that is the availability of resources.

“I know from first-hand experience that early intervention between the parents and child plays a huge factor,” said Hernandez. “Providing financial resources for whatever parents need to support their child is a priority. Additionally, having peer mentor support for individuals with I/DD would help them grow throughout all stages of life.”

Beyond her work as a peer mentor, Hernandez was also one of four keynote speakers for the North Carolina State of the Art conference in October 2024, where she was awarded the Southeast Postsecondary Education Alliance Deb Hart Student Leadership Award. Hernandez hopes to lend her expertise and skills to benefit both the NCCDD and North Carolinians with disabilities in general.

Kenneth Kelty

Kelty is from Chapel Hill and works in disability advocacy and research. He is a part-time administrative assistant at Triangle Disability and Autism Services and a Social/Clinical Research Assistant and Disability Advocate at the UNC Carolina Institute for Developmental Disabilities. His work focuses on policy, postsecondary education, and leadership training through the LEND program. He has also worked with the Leadership Alliance on Neurodevelopmental Disabilities (LAND) “Meet the Need” initiative and continues to support efforts that center on lived experience in policy decisions.

Kelty also hosts the podcast “Exceeding Expectations with Kenneth Kelty,” where he interviews people making a positive impact for the disability community locally and nationally. He is a member of the Association of University Centers on Disabilities (AUCD) Network, a board member of the Southeastern Postsecondary Education Alliance, and a frequent conference speaker.

“As a Council member, I want to create more professional advocacy opportunities for people with lived experience and keep moving important conversations about inclusion forward,” Kelty said. “I believe in ‘nothing about us, without us.’”

About NCCDD’s Council Members

Serving up to two four-year terms, the 40-member Council represents all regions of North Carolina. Membership is made up of 60% being people with intellectual or other developmental disabilities (I/DD) or family members, and the remaining 40% being representatives from state agencies, nonprofit, and professional organizations. Learn more about the Council.

Public Policy Update (as of January 19, 2026)

FEDERAL

Budget

The current continuing resolution (CR) expires at the end of January, which makes passing a new CR or full-year funding bill a time-sensitive priority in Congress. Senate and House leaders have been working on funding bills. On January 15th, the Senate passed legislation that would provide full-year Commerce, Justice, and Science, Energy and Water Development, and Interior and Environment appropriations by a vote of 82 to 15, sending the measure to President Trump for his signature. The House previously passed this bill on January 8th by a vote of 397 to 28.

Programs Affecting People with Disabilities Covered under the Labor-Health and Human Services-Education (LHHS) Bill

On January 20th, the House Appropriations Committee released the Consolidated Appropriations Act for 2026. Negotiated and delivered on a bipartisan, bicameral basis, the legislation includes appropriations for Labor, Health and Human Services; Education and Transportation, Housing and Urban Development; and Defense Homeland Security. Of most interest to the I/DD community is the LHHS and Education budget. The bill includes $224 billion for programs and activities, which is more than $50 billion above the Trump Administration’s budget request. However, overall funding proposed for Health and Human Services is $108 billion, which is $7 billion or 6% below the 2025 level.

A few highlights:

• Employment - $2.9 billion for Workforce Innovation and Opportunity Act State Grants, which is a reduction from 2025.
• Centers for Medicare & Medicaid Services (CMS) Program Management – total of $4.1 billion for CMS administrative expenses, equal to the 2025 level.
• Head Start - $12.4 billion which is an increase of $85 million above the 2025 level.
• Administration for Community Living (ACL)- $2.5 billion for ACL, which represents level funding for 2025.
• Special Education – $15.5 billion, which is an increase of $23 million above the 2025 level.

It is expected that there will be a House floor vote on Thursday, January 22nd. The Senate returns the week of January 27th and is expected to address the bill in an effort to meet the January 31st deadline.

Affordable Care Act (ACA) Subsidies

On December 31st, the enhanced Affordable Care Act (ACA) subsidies included in the American Rescue Plan Act and the Inflation Reduction Act expired. The loss of subsidies will result in millions of Americans facing significantly higher monthly health insurance premiums, with some costs potentially doubling, leading to reduced enrollment and fears of compromising care.

The House of Representatives passed a bipartisan bill to extend enhanced ACA tax credits for three years in early January 2026. However, the Senate has not yet successfully dealt with extending the subsidies as of mid-January. Senate Majority Leader Thune has refused to bring the bill to a vote, citing concerns about fraud and "waste" in the ACA. As of January 17th, the Senate went on recess, and no deal had been reached to extend the subsidies, with millions facing higher costs as open enrollment closes. The focus shifts to whether any compromise can emerge after the recess, though the outlook is uncertain.

Changes in Childhood Vaccine Schedule

The Centers for Disease Control and Prevention (CDC) has made changes to the childhood vaccine schedule, easing guidance for the rotavirus, meningococcal disease, hepatitis A, respiratory syncytial virus (RSV), and flu vaccines.

In addition, the CDC is removing the requirements for states to report pediatric vaccination data. States have to report data on Medicaid and Children’s Health Insurance Program (CHIP) care delivered, including prenatal and pediatric immunization data. Now, CMS is removing the immunization data portion of what states have to report to CMS.

These new recommendations may be confusing for people who want to get vaccinated and for pharmacies that provide the vaccines. These new guidelines and the previous weaker endorsement of COVID vaccines could result in fewer people getting vaccinated. This could disproportionately affect people with disabilities—especially people who are immunocompromised or use assistive technology to help them breathe.

ABLE Accounts

ABLE accounts will be available to Americans with disabilities whose disability onset is by age 46. Until now, the age limit has been 26. In addition to expanding the eligibility pool, people with disabilities will also be able to save more money in their ABLE accounts in 2026. The contribution limit will increase to $20,000 (up from $19,000) this year. Workers with disabilities living in the 48 contiguous states are allowed to save up to $15,650 in earnings in ABLE accounts above and beyond the gift tax limit for the year if they do not participate in an employer-sponsored retirement plan, according to the ABLE National Resource Center. In addition, the legislation ensures that funds from traditional 529 college savings plans can roll over into ABLE accounts.

Grants Cut for American Academy of Pediatrics (AAP)

The Department of Health and Human Services (HHS) cancelled seven federal grants worth millions of dollars for the American Academy of Pediatrics (AAP). The funding included money for projects to prevent fetal alcohol syndrome, reduce sudden infant death syndrome, and identify autism early. The AAP works to improve the health and well-being of infants, children, and young adults. The Administration cited several reasons for the cancellation, including AAP's use of 'identity-based language,' such as references to racial disparities and 'pregnant people,' and insufficient focus in at least one grant program on nutrition and chronic disease prevention, which they said do not align with the agency's priorities. The AAP is currently suing HHS over its changed vaccine policies.

STATE

Medicaid Rates

The second week of December, Governor Stein announced that the Medicaid cuts to providers that were put in place on October 1, 2025, are ending. The cuts were in response to the General Assembly allocating dollars that will fund Medicaid only through April 2026. The cuts are being reversed following successful legal challenges and no additional action from the legislature.

Providers get full payment for past and future services at pre-cut levels. The updated NC Medicaid Direct fee schedules were posted on the Department’s Fee Schedules and Covered Codes Portal in January. NC Medicaid annual procedure code updates will also be reflected in the updated NC Medicaid Direct fee schedules posted. Provider claims that were billed at the reduced rates will be re-processed.

The underlying $319 million funding gap is not yet resolved. The responsibility now falls back to the General Assembly to provide a long-term financial solution for Medicaid.

NC Ombudsman Program

The contract with Legal Aid of North Carolina (LANC) and its subcontractors to run the NC Medicaid Member Ombudsman program ended on December 31, 2025, due to a $33 million budget shortfall in the state's Medicaid Managed Care Oversight Fund. The essential functions of the Member Ombudsman program transitioned to the North Carolina Department of Health and Human Services (NCDHHS), Division of Health Benefits (NC Medicaid), starting January 2, 2026.

While the essential aspects of the program continue, there are some reductions in services due to the reduced funding. NCDHHS Ombudsman agents will no longer refer beneficiaries directly to social needs programs (like food or housing assistance) or legal assistance, but will instead connect them to their health plan for care management support.

The original phone number (877-201-3750) and website (which redirects to a new page on the NC Medicaid website) remain operational.

Upcoming NCCDD Webinars in February

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!

Policy Education Meeting

Thursday, February 12, 2026, from 10:30 AM 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: Developing Relationships

Wednesday, February 18, 2026, from 1 - 2 PM 

It’s not what you know, but who you know. Have you ever heard that before? Of course, you have because relationships with other people are one of the most meaningful aspects of life, for better or for worse. That is the topic during the next webinar: developing and maintaining healthy relationships, and ending the unhealthy ones.

Join and share the story about how you met your BFF of 10+ years, or tell the story of how you befriended your state representative who now has your telephone number on speed dial, or talk about how an old girlfriend or boyfriend introduced you to your current husband or wife. You could even share about ending a relationship that was not good for you.

Register here: https://www.zoomgov.com/meeting/register/GwJ-kZReQ7G4Joz9GYr_6g#/registration

Learn more about this webinar series: https://nccdd.org/get-involved/self-advocate-discussion-series 

The Council Presents: Learn about the Ability Leadership Program of North Carolina (ALP-NC)

Thursday, February 16, 2026, from 1 - 2 PM

Join advocacy leaders with lived experience from ALP-NC as they share what the training program is like and how they use what they learn in real advocacy work. Hear directly from some of North Carolina’s leading advocates, including Cameron Kempson, CEO of Centered Resources and ALP Coordinator, Hannah Shumaker, ALP-NC Director, and ALP-NC graduates and facilitators. The ALP-NC program is run by Centered Resources LLC and funded by the North Carolina Council on Developmental Disabilities (NCCDD).

To register: https://www.zoomgov.com/meeting/register/JTEBPG47SW2g2Z9fVyH0PQ#/registration

Learn more about this webinar series: https://nccdd.org/get-involved/nc-council-presents

Boletín en español 

Lea el boletín aquí: Aspectos destacados & temas de enero de 2026

Newsletter in Accessible Audio

Listen to the audio version here or click on the image below: https://www.buzzsprout.com/2526321/episodes/18560799