May 2025 Highlights and Hot Topics
Message from the Executive Director
Talley Wells, Executive Director, GCDD
A lot is happening in Raleigh and Washington, DC that will likely have significant negative impacts on the developmental disability community. It is important that our North Carolina disability community continue to contact state and federal senators and representatives with our opinions and stories. Now is as important a time as ever!
Please also join us on June 12th at 10:30 a.m. for our North Carolina Council on Developmental Disabilities (NCCDD) Policy Education Meeting for Critical Federal and State Updates for North Carolina’s Disability Community.
At the federal level, the U.S. House passed a bill with significant cuts to Medicaid and SNAP (what used to be called food stamps), which will decrease the amount of Medicaid and SNAP funding that comes to North Carolina. Our I/DD community is already in crisis due to the workforce shortage and the waiting list. These two challenges will get worse if funding to Medicaid and SNAP is decreased. Please read the policy update below for more information and join us on June 12th for our Policy Education Meeting.
At the state level, the North Carolina House and Senate have released their proposed budgets. There is no additional funding for the 17,881-person waiting list for the Innovations Waiver or for increased pay for Direct Support Professionals. The House budget also has cuts to critical funding for reentry from jails and prisons, crisis services, and a ten million dollar cut to the NC DHHS budget to eliminate vacant positions.
You can use use this link to contact your state and federal leaders to give them your opinions of how these proposed budgets will impact you and your loved ones. Please know that your calls and outreach are making a difference, especially in this challenging time.
Talley Wells, NCCDD Executive Director
Public Policy Update (as of 5/22/25)
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 May 22, 2025.
STATE
Budget
The House released its budget on May 22, 2025. This follows the release of the Governor’s budget and the Senate budget. Below is a comparison of the budgets in areas related to I/DD.
| Budget Item | Governor's Budget | Senate Budget | House Budget |
| Innovation Waiver Slots and Brain Injury Waiver Slots | Creates up to 200 Innovation Waiver slots and 75 Traumatic Brain Injury (TBI) Waiver slots, effective January 1, 2026. | Not included | Not included |
| Direct Support Professional Wages | Provides $5 million to strengthen the Direct Support Professional (DSP) workforce. | Not included | Not included |
| Medicaid Rebase | $700,320,698 recurring, 2025-2026 and 2026-2027 (these are funds that cover changes in Medicaid enrollment, utilization, etc.) |
$500,000,000 recurring FY 25-26 $810,000,000 recurring FY 26-27 |
$500,000,000 recurring FY 25-26 $810,000,000 recurring FY 26-27 |
| Healthy Opportunities |
Provides $87,667,541 recurring FY2025-2026 and FY 2026-2027 to sustain current program Provides $3,174,300 recurring FY 2025-2026 and $11,286,400 FY 2026-2027 to expand Health Opportunities statewide |
Not included for either FY
|
Not included for either FY
|
| Strengthen Division of Services for Deaf Blind/Division of Employment and Inclusion for People with Disabilities |
Provides $995,162 recurring for FY2025-2026 and FY2026-2027 and $4,755,071recurring FY2025-2026 and FY2026-2027 This funding addresses workforce issues and provides state matching funds required to draw down additional federal Rehabilitation Services Administration grant funds. This grant provides total federal funding of $21 million across the DEIPD and the DSB. |
Not included | Not included |
| Single Stream Funding | Not included | Reductions in General Fund appropriations for Single Stream Funding. | Reductions in General Fund appropriations for Single Stream Funding. |
| Medicaid Reimbursement Rate Increases | Not included | Not included |
Increases the Medicaid provider reimbursement rates for durable medical equipment (DME), orthotics, and prosthetics by 3%. Increases the Medicaid provider reimbursement rates for speech-language therapy services by 3%. |
| Special Population Headcount Adjustment | Not included |
$20,589,306 FY 2025-2026, and FY 2026-2027 recurring Adjusts funding budgeted for the Exceptional Children (EC) preschool and school-age allotments, as well as the Limited English Proficient (LEP) allotment, to reflect actual student headcount. |
$20,589,306 FY 2025-2026, and FY 2026-2027 recurring Adjusts funding budgeted for the Exceptional Children (EC) preschool and school-age allotments, as well as the Limited English Proficient (LEP) allotment, to reflect actual student headcount. |
| Exceptional Children Funding Cap |
$27,000,000 recurring for F2025-2026 and FY2026-2027 Eliminates the funding cap for the Children with Disabilities allotment |
Not included |
$10,600,000 recurring for FY2025-2026 and FY2026-2027 Provides funds to support an increase in the funding cap for the EC allotment from 13.0% to 13.25%. |
| Community College I/DD Workforce Training Expansion | Not included |
$3,850,000 FY2025-2026 and FY2026-2027 recurring Provides funds to expand training programs for students with intellectual and developmental disabilities (IDD) from 15 to up to 25 community colleges. |
Not included |
There are additional items of difference between the two budgets including taxes, state employee raises, teachers’ salaries, and additional funding for Hurricane Helene relief.
The Senate is expected to vote not to concur with the House budget, which will set up the conference process between the two chambers. A Conference Committee will convene to work out differences and finalize a budget to send to the Governor.
Bills
The following are bills that met the crossover deadline and can be considered this session.
H171 Equality in State Agencies/Prohibition on DEI – This bill eliminates Diversity Equity Inclusion initiatives in state and local government agencies. It defines DEI as programs or policies that influence hiring or employment practices based on race, sex, color, ethnicity, nationality, or sexual orientation, except through merit-based processes.
H4 Sam’s Law – This bill requires schools to develop action plans for students with certain medical conditions.
H21 - Driver’s License Designation/Autism – This bill requires Department of Motor Vehicles to develop a designation of autism on licenses, upon request. It also includes requirements for training for law enforcement officers.
H562 - Community College Behavioral Health Workforce Act - The bill directs the Commission for Mental Health, Developmental Disabilities, and Substance Abuse Services to engage in rulemaking to amend staff definitions for certain qualified professionals. The two positions most related to IDD that are required to be amended are:
- Associate Professional may be a graduate of a community college with an associate degree in a human services field with less than two years of experience with the population served.
- Qualified Professional may be a graduate of a community college with an associate degree in a human services field and has two years of supervised mental health, developmental disabilities, and substance abuse services experience with the population served.
S403/H491 – Medicaid Work Requirements - The bill mandates the Department of Health and Human Services, Division of Health Benefits (DHB), to negotiate with the Centers for Medicare and Medicaid Services (CMS) for the implementation of work requirements as a condition for Medicaid participation, should CMS authorize such requirements.
S474 – The DAVE Act - This bill would require the office of the State Auditor to establish a Division of Accountability, Value, and Efficiency (“DAVE”).
- Every executive branch/State agency would be required to report to DAVE annually to justify each agency’s continuing existence and the continuing need for any vacant positions.
- The bill would also authorize the use of AI for DAVE to examine agency records and budgets for amounts spent, duplicative spending, and the effectiveness of expenditures regarding their intended purpose.
- DAVE would then report to the NCGA annually and have the authority to recommend dissolving agencies and eliminating positions within agencies.
FEDERAL
Large overall cut - According to Congressional Budget Office, the bill would cut Medicaid by at least $716 billion, the largest cut in the program’s history.
- Work Requirements - Millions of people in the Medicaid expansion population would be at risk of losing Medicaid under a provision for work requirements which requires 80 hours of work, volunteering, or school. While there are exemptions for people with disabilities, past experience has shown that even people who are supposed to be protected, and people who are working, often lose coverage due to the ‘red tape’ of documenting and reporting the 80 hours. This puts administrative burdens on individuals, counties, and states.
- Effects on Medicare recipients - One provision would take Medicaid coverage away from people, mostly seniors and those with disabilities who also have Medicare, due to provisions that make it harder to get and stay enrolled in Medicaid.
- More Frequent Eligibility Check - Some people would also lose coverage due to new requirements that expansion enrollees re-prove their eligibility every six months (instead of annually). These requirements frequently end up pushing eligible people off Medicaid because they don’t receive or submit the necessary paperwork, or because the state fails to process the paperwork.
- Reduction in Federal Matching - More than 30 states, including North Carolina, would see large federal funding cuts for their Medicaid expansion if they continued to provide health coverage to people who do not meet the very restrictive “qualified alien” immigration eligibility requirement. Currently some women and children who are here legally, but have not yet obtained US citizenship, are covered in NC. Keeping this would result in a lowered federal match for Medicaid expansion from 90% to 80%.
- Co-Pays - The legislation would also raise costs for Medicaid expansion enrollees and will lead many of them to defer needed care. The bill requires states to charge working people with incomes just above the poverty line — $16,000 year for an individual — new cost-sharing charges when they go to the doctor.
While not all of these cuts and changes in policy have a direct impact on people with I/DD, their impact on state Medicaid programs make difficult for states to maintain optional Medicaid services – which are the services that provide home and community based supports for people with I/DD.
What’s next? The bill heads to the Senate. There are expectations that there will be revisions to the bill in the Senate, specifically around the Medicaid changes. There are Senate members who are concerned about the impact of the Medicaid cuts on their states. So amendments are expected. This will require negotiations between Senate and House before a bill could be sent to the President for signature.
Make you voice heard about the impact of these cuts on people with I/DD!
Join NCCDD for its Monthly Policy Education Meeting
The North Carolina Council on Developmental Disabilities (NCCDD) holds monthly meetings to discuss current policy issues that impact people with intellectual or other developmental disabilities (I/DD). NCCDD supports policies that encourage the integration between people with intellectual or developmental disabilities (I/DD), those who support them, and the community. NCCDD provides this information to educate and inform. We do not lobby on specific legislation.
Join our Public Policy Education Meetings on the second Thursday of every month via Zoom. The meetings are free and open to the public. No registration required. Join the meeting at this link: https://www.zoomgov.com/meeting/register/vJItdu-uqD8oHpxzFX9FiES_lSmk_8OP4r4#/registration
¡Madres y Padres: ¡Su Voz Transforma Vidas! Estrategias para defender a tu hijo/a con discapacidad.
Al cerrar el Mes de las Madres y dar la bienvenida al Mes de los Padres, queremos reconocer el amor, la fuerza y la entrega de quienes crían hijos e hijas con discapacidad intelectual o del desarrollo (IDD). Ustedes son más que cuidadores: son defensores incansables.
Ser madre o padre de un niño, niña o adulto con discapacidad convertirse en su principal voz. Abogar es asegurarse de que reciba los apoyos necesarios para crecer, aprender y ser feliz. Tu papel es fundamental.
¿Qué implica abogar por tu familiar?
- Solicitar servicios escolares y apoyos adecuados.
- Garantizar atención médica de calidad.
- Participar en reuniones clave
- Explicar a otros cómo apoyar a tu hijo/a en la vida diaria.
¿Por qué tu voz importa?
Nadie conoce a tu familiar como tú. Tu visión ayuda a los sistemas a entender sus verdaderas necesidades, a mirar sus capacidades, y a construir un camino más justo no solo para tu familia, sino para muchas más.
Estrategias clave de abogacía para familias:
- Infórmate y busca apoyo: Conoce recursos disponibles (grupos, terapias, ayudas económicas).
- Aprende sobre sus derechos: Conoce leyes como IDEA, ADA y Sección 504.
- Documenta todo: Guarda registros de reuniones, acuerdos y mensajes.
- Comunica con claridad: Sé directo/a y firme.
- Construye redes de apoyo: Únete a otros padres, maestros y profesionales.
- Incluye a tu familiar: Su opinión cuenta.
- Cuida tu bienestar: Tu salud es importante para ser un buen defensor.
¡Celebra cada paso! Cada logro, por pequeño que sea, merece reconocimiento.
Compartir tu experiencia inspira a otros y fortalece nuestra comunidad.
No estás solo/a. Tu voz hace la diferencia. Tu amor transforma vidas.
In English:
Parents: Your Voice Transforms Lives! Strategies for Advocating for Your Child with Disabilities.
As we close Mother’s Month and welcome Father’s Month, we want to recognize the love, strength, and dedication of those raising children with intellectual or developmental disabilities (I/DD). You are more than caregivers—you are tireless advocates.
Being a parent to a child or an adult with a disability means becoming their primary voice. Advocacy ensures they receive the necessary support to grow, learn, and be happy. Your role is essential.
What does advocating for your family member involve?
- Requesting appropriate school services and support.
- Ensuring access to quality medical care.
- Participating in key meetings.
- Educating others on how to support your child in daily life.
Why does your voice matter?
No one knows your family member like you do. Your perspective helps systems understand their true needs, recognize their abilities, and build a fairer path—not just for your family, but for many others.
Key Advocacy Strategies for Families
- Stay informed and seek support: Learn about available resources (groups, therapies, financial aid).
- Know their rights: Understand laws like IDEA, ADA, and Section 504.
- Document everything: Keep records of meetings, agreements, and communications.
- Communicate clearly: Be direct and firm.
- Build support networks: Connect with other parents, teachers, and professionals.
- Include your family member: Their voice matters.
- Take care of yourself: Your well-being is important for effective advocacy.
Celebrate every step!
Every achievement, no matter how small, deserves recognition. Sharing your experience inspires others and strengthens our community.
You are not alone. Your voice makes a difference. Your love transforms lives.
Next Self-Advocate Discussion Series: The Benefits of Art as an Advocacy Tool
Art is a powerful tool for advocacy. On June 18, 2025, the Self-Advocate Discussion Series welcomes professionals in the arts who are also self-advocates! Join us and learn how you can use your own talented gifts to showcase the value of people with intellectual and developmental disabilities through art.
The Self-Advocate Discussion Series is hosted by NCCDD every third Wednesday of the month. The series aims to keep North Carolina self-advocates informed and engaged in discussion on topics of social and systems change. Series sessions are a time to connect with others with lived experience, share common interests, develop impact strategies for telling personal stories, and stay connected with the NCCDD community. Learn more about the webinar series.
Aspectos distacados y temas de interes de mayo de 2025
