February 2025 Highlights and Hot Topics
-
-
-
-
-
- Message from the Executive Director
- Public Policy Update (as of 2/21/25)
- Submit Your Story for NCCDD's My Story Matters Campaign!
- NCCDD Welcomes DHHS Leadership: A Shared Vision for I/DD Services
- Hispanic Disability Outreach
- What is Organized Advocacy? Find Out at the Next Self-Advocate Discussion Series!
- Boletín en español
- Newsletter in Accessible Audio
-
-
-
-
Message from the Executive Director
Talley Wells, NCCDD Executive Director
Now is our time to advocate and educate. Our Congress, President and state legislators will all be considering changes to Medicaid. Medicaid is the lifeblood of developmental disability services. It is essential!
Medicaid is what funds individuals with intellectual and other developmental disabilities (I/DD) to work in their local communities. It pays for essential services and supports at home for people with I/DD, such as assistance with eating, cooking, using the bathroom, getting out of bed, and other activities when such assistance is needed. It provides respite for family members and individuals with I/DD when that is needed.
But that’s not all! Medicaid pays for healthcare for hundreds of thousands of people in North Carolina. This is money that makes sure we have our hospitals, enables people who work in those hospitals to have jobs, and pays for medical care for our fellow citizens, including children, when they have cancer, a heart attack, or other medical needs.
Of course, Medicaid, like any big healthcare system, can be improved. It can be made more efficient. And, it can have more cost savings. But Medicaid is as essential to our healthcare system for people with I/DD as breathing is for all of us to live.
So, now is the time to make sure our legislators, Congress, and President understand how important Medicaid is to us. This is not a partisan issue. In fact, all of our leaders worked hard on expanding Medicaid here in North Carolina just last year. This is simply an issue of how our community can continue to live and thrive!
To reach out to your legislative leaders, you can go to this website to find your representatives. Reach out to them and share your story. Let your leaders know whether and how Medicaid is important to you.
Talley Wells, NCCDD Executive Director
Public Policy Update (as of 2/21/25)
FEDERAL
Reconciliation
Congressional Republicans are planning on using the reconciliation process to achieve some of their budget goals. Reconciliation is a procedure that makes it easier to pass legislation related to taxes and spending.
On February 11, 2025, the House Budget Committee released and passed a budget resolution which included significant tax cuts and cut spending by $1.5 trillion over the next 10 years. The bill requires the House Energy and Commerce Committee, which includes Medicaid and other health care programs, to cut $880 billion. This will be voted on by the full House the week of February 25, 2025. If passed by the House of Representatives, the House Energy and Commerce Committee will begin making cuts to meet the required reductions.
On the Senate side, the Senate Budget Committee released and passed a budget resolution this month which includes increases in defense spending and border security funding. The Senate plans to put tax cuts in a second bill. The budget resolution instructs the Health, Education, Labor and Pensions Committee to cut at least $1 billion.
Budget
In December 2024, Congress passed a Continuing Resolution (CR) that funds the government through March 14, 2025. As we approach this deadline, Congress is working to finalize appropriations bills to fund the remainder of fiscal year 2025. Congress must finalize the appropriations bills or pass another continuing resolution to continue to fund the federal government through September 30, 2025.
Our major concern about reconciliation and the budget process is the potential of cuts to Medicaid. Reductions in the federal match, block grant funding, and per capita caps are means that can be used to reduce federal dollars that fund Medicaid services and supports. This would force states to consider things like changes to eligibility, reduction of benefits, and work requirements. Congress needs to hear now about the importance of Medicaid in the lives of people with I/DD.
Looking forward to next year, the U.S. House Committee on Appropriations Labor-Health-Human Services-Education-Related Agencies (LHHS) subcommittee announced an opportunity for the public to submit testimony to be considered for funding programs in Fiscal Year 2026. The public hearing will be on April 9, 2025 at 10:30 AM in room 2358-C of the Rayburn House Office Building. The deadline to submit requests to testify is March 21, 2025.
Protect Section 504 of Rehabilitation Act
Section 504 is the federal civil rights law that protects children and adults from discrimination in places like hospitals, schools, housing, and many other federal programs and services. Seventeen states have brought a lawsuit attempting to declare that Section 504 is unconstitutional. If found unconstitutional, it would impact the educational rights of students with disabilities.
The states bringing the case are Alaska, Alabama, Arkansas, Florida, Georgia, Indiana, Iowa, Kansas, Louisiana, Missouri, Montana, Nebraska, South Carolina, South Dakota, Texas, Utah, and West Virginia.
STATE
Legislative - Bills of Interest
HB 113 – Create Committee on Medicaid Sustainability – This bill establishes a joint legislative committee to explore modifications to the NC Medicaid program to maintain state funding levels in preparation of potential decreases in federal Medicaid dollars. Modifications may include reducing optional services, reducing eligibility groups, increasing provider assessments, and reducing reimbursement rates. A final report from this committee is due by April 2026.
SB 77 – School Contracted Health Services – This bill would allow parents to choose their child’s nurse for services that are required by the student’s IEP.
HB 4 - Sam’s Law/Seizure Safe Schools Act – this bill requires schools to have a plan for training students and school personnel on recognizing and responding to seizures.
HB 21 - Driver’s License Designation/Autism – This bill requires the DMV to develop a designation of Autism on licenses, upon request. It also includes training on Autism for officers.
Submit Your Story for NCCDD’s My Story Matters Campaign!
March is Developmental Disabilities (DD) Awareness Month! To celebrate, the North Carolina Council on Developmental Disabilities (NCCDD) wants to hear from you for its My Story Matters campaign.
If you or someone you know has an intellectual or other developmental disability (I/DD), this is a chance to share your story and make a difference! Selected stories will be featured throughout March to help raise awareness and highlight the voices of North Carolinians with I/DD.
Sharing is easy! Just fill out a short online form.
Why Share Your Story?
Your experiences matter. Your voice matters. By sharing your story, you’re not just raising awareness—you’re driving change!
Last year, we heard from self-advocates and family members whose stories helped raise awareness about issues important to the I/DD community.
Lucas, a self-advocate with Autism from Guilford County, told us how expressing his needs empowers him and promotes self-determination. He advocates for people with I/DD to speak for themselves and pursue meaningful career opportunities, just like anyone else.
Justin, a man with Autism from Iredell County, shared his experience with the direct support professional (DSP) crisis. He is very involved in his local community and wishes he could live independently, yet even with an Innovations Waiver, he is unable to access the support staff necessary for him to live on his own.
Laura, a mother to a man on the Autism spectrum from Orange County, highlighted the importance of community living supports. She explained that with consistent support, individuals with I/DD can achieve greater independence, ultimately saving the state money over time.
Your story can help continue these important conversations and drive change!
How It Works
- Fill out a short online form with information about yourself.
- Upload a photo of yourself—it can be a selfie, a picture with family and friends, or you doing something you love in your community.
- Choose if you want your story featured online. If you say yes, we’ll notify you when it’s shared!
Your story matters, and we can’t wait to hear it!
En español
Descubra cómo puede ser parte de la campaña My Story Matters.
NCCDD Welcomes DHHS Leadership: A Shared Vision for I/DD Services
Dr. Devdutta Sangvai, DHHS SecretaryNCCDD was pleased to welcome Dr. Devdutta Sangvai, the new Secretary for the Department of Health and Human Services (DHHS), and Kelly Crosbie, Director of the DHHS Division of Mental Health, Developmental Disabilities, and Substance Use Services at its recent Council meeting. Their attendance at the February meeting reinforced a shared commitment to expanding access to care, addressing the direct support professional (DSP) crisis, and modernizing services for North Carolinians with intellectual and other developmental disabilities (I/DD).
At the meeting, Dr. Sangvai, a family medicine physician, Duke University professor, and North Carolina healthcare leader, outlined his priorities for the I/DD community. These included improving access to programs and services, creating inclusive programs, and building a sustainable DSP workforce. He highlighted his focus on working with DHHS to tackle the Innovations Waiver waiting list and setting clear, measurable goals to reduce it.
Kelly Crosbie, DHHS DMH/DD/SUS DirectorDr. Sangvai’s remarks set the stage for innovation and modernization. He emphasized creative solutions to stabilize the DSP workforce, such as same day pay for DSPs and allowing families to identify their own support workers. While securing legislative approval and funding is key, he stressed the importance of creative solutions to accelerate change.
Crosbie announced two rounds of grants aligned with the 1115 Waiver, which allows states to test experimental projects that promote Medicaid objectives. The grants, totaling $3 million, will support recruitment and retention in North Carolina’s DSP workforce. The first round of grants will fund pilot programs, while the second round will focus on more traditional long-term retention programs. The latter will receive Medicaid-matched funding, doubling the available resources.
Council members left the discussion feeling hopeful and energized by DHHS’s support. By working together and thinking creatively, North Carolina is taking real steps toward a stronger, more inclusive system for people with I/DD and their families.
Amplify Your Voice: Join Our Monthly Self-Advocate Discussions!
The North Carolina Council on Developmental Disabilities (NCCDD) invites individuals with intellectual and developmental disabilities (I/DD) and their families to be part of our Self-Advocate Discussion Series!
What is the Self-Advocate Discussion Series?
It’s a monthly virtual gathering where people with I/DD come together to talk about issues that impact their daily lives, learn about their rights, and explore ways to advocate for themselves and their communities.
What does it mean to be a self-advocate?
A self-advocate is someone who speaks up for their rights and needs, makes informed choices, and takes action to improve their life and the lives of others with disabilities. If you’re not sure where to start, this series is a great place to learn!
When are the monthly gatherings?
Every 3rd Wednesday of the month at 1:00 PM ET.
Is there language access?
Yes. Full Spanish interpretation is provided in every session.
Why join?
- Know your rights: Learn how laws like the Americans with Disabilities Act (ADA) impact services and opportunities.
- Get valuable resources: Find information on education, employment, transportation, and independent living.
- Connect with a supportive community: Share experiences and build relationships with others on the same journey.
- Take action and make a difference: Learn how sharing your story can influence policies and create change.
Next webinar in March: Organized Advocacy
On March 19 at 1:00 PM, learn how disability rights advocacy started, the difference between educating and lobbying, and how personal stories can drive change. We especially encourage Latino individuals with I/DD and their families to participate—your voices matter, and your experiences can help create better support for everyone!
Ready to join? https://www.zoomgov.com/meeting/register/vJIscuqsqTIuHKmNsMe66wT4whwK0hPGVAM#/registration
Want to see the full 2025 schedule? Visit: NCCDD - Self-Advocate Discussion Series
Together, we can make a difference. See you there!
En español: ¡Amplifica tu voz: Únete a nuestras discusiones mensuales para auto defensores!
El Consejo de Carolina del Norte sobre Discapacidades del Desarrollo (NCCDD) invita a las personas con discapacidades intelectuales y del desarrollo (I/DD) y sus familias a formar parte de nuestra Serie de Discusiones para Auto defensores.
¿Qué es la Serie de Discusiones para Auto defensores?
Es una reunión virtual mensual donde personas con I/DD se reúnen para hablar sobre sus derechos y asuntos que afectan su vida diaria, aprender sobre sus derechos y explorar formas de abogar por ellos mismos y sus comunidades.
¿Qué significa ser un auto defensor?
Un auto defensor es alguien que habla en función de sus necesidades, toma decisiones informadas y actúa para mejorar su vida y la vida de otras personas con discapacidades. Si no estás seguro de por dónde empezar, esta serie es un excelente lugar para aprender.
¿Cuándo?
Cada tercer miércoles del mes a la 1:00 PM ET.
¿Acceso al idioma?
Todas las sesiones cuentan con interpretación completa al español.
¿Por qué unirse?
- Conoce tus derechos – Aprende cómo las leyes como la Ley de Estadounidenses con Discapacidades (ADA) impactan los servicios y oportunidades.
- Obtén recursos valiosos – Encuentra información sobre educación, empleo, transporte y vida independiente.
- Conéctate con una comunidad de apoyo – Comparte experiencias y establece relaciones con otros que están en el mismo camino.
- Actúa y marca la diferencia – Aprende cómo compartir tu historia puede influir en políticas y generar cambios.
Tópico marzo: Defensa organizada
19 de marzo – Defensa organizada: Aprende cómo comenzó la defensa de los derechos de las personas con discapacidades, la diferencia entre educar y cabildear, y cómo las historias personales pueden impulsar cambios.
Exhortamos a las personas latinas con I/DD y sus familias a participar; sus voces importan y sus experiencias pueden ayudar a crear mejor apoyo para todos.
¿Listo para unirte? https://www.zoomgov.com/meeting/register/vJIscuqsqTIuHKmNsMe66wT4whwK0hPGVAM#/registration
¿Quieres ver el calendario completo de 2025?
Visita: NCCDD - Serie de Discusiones para Autodefensores
Juntos, podemos marcar la diferencia. ¡Nos vemos allí!
What is Organized Advocacy? Find Out at the Next Self-Advocate Discussion Series!
On March 19, 2025, at 1:00pm, join the latest Self-Advocate Discussion Series on organized advocacy, a type of advocacy where relationships and advocacy come together.
- Learn from NCCDD and other advocates about the grassroots efforts of the disability rights movement.
- Be a part of the discussion of different forms of advocacy and the difference between educating and lobbying.
- You will also learn how sharing your story is important to improve community living for people with intellectual and other developmental disabilities (I/DD).
Join the conversation by registering today!
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 febrero de 2025
