January 2025 Highlights and Hot Topics
Message from the Executive Director
Talley Wells, NCCDD Executive DirectorHow many songs can you think of that have the word “change” in them? I found a website that lists 45 songs about change (the website also has a gazillion pop-up ads).
Many of these songs about change have been running through my head because of all of the changes in state and federal leadership that are happening. For many of us, change can be unsettling. It can also be a time of new opportunities.
I recently had the opportunity to meet the newly appointed Secretary at the North Carolina Department of Health and Human Services (DHHS), Devdutta Sangvai. I was excited to see how much joy and enthusiasm there was from the people in the room who had worked with him in the past. They were thrilled that he will be leading the Department. I was even more excited when Secretary Sangvai followed up on his fourth day at DHHS on a developmental disability policy issue that needed quick action.
In our meeting with him, Secretary Sangvai shared his initial vision for the work of DHHS. The vision he outlined is consistent with the top priorities of the developmental disability community. It also appears that many of the leaders at DHHS will be staying and continuing the important work they have been doing. This is encouraging because we have so much work to do, and we have strong leaders that are committed to making significant progress on developmental disability issues.
At the state and federal level, it will be critical to make sure our leaders understand the needs of the developmental disability community and how many of the services and supports to meet those needs are paid for through Medicaid. We have always had bipartisan support for developmental disability issues. We have many friends on both sides of the aisle.
At the same time, there are proposed changes to Medicaid funding and other programs that could have a deep and dangerous impact on people with developmental disabilities. It is critical to make sure that we are talking with our federal and state legislators, so they know us; and so they understand, through our stories, the critical role of Medicaid.
I look forward to working with our community at this critical time on these important issues.
Talley Wells, NCCDD Executive Director
Public Policy Update (as of 1/27/25)
State
General Assembly
The North Carolina legislature convened for its long session on January 8, 2025 with the main message of addressing disaster recovery in the state’s western counties. The main purpose of the day was to elect leadership.
Sen. Phil Berger (R-Rockingham), was reelected as Senate leader for another term, a role he’s held since Republicans took the majority in 2011. Rep. Destin Hall (R-Caldwell), was elected as the new speaker of the House. He replaces Tim Moore, who's now serving in Congress. Rep. Mitchell Setzer (R-Catawba) was elected speaker pro tempore.
The legislature reconvened on January 29, 2025 to begin considering legislation. In the interim, committee appointments have been made. Of particular interest to the intellectual and other development disabilities (I/DD) community are the appropriations committees. The chairs of these committees are listed below:
Senate Appropriations
- Chair: Senator Hise
- Chair: Senator Jackson
- Chair: Senator Lee
Senate Health and Human Services Appropriations
- Chair: Senator Burgin
- Chair: Senator Galey
- Chair: Senator Sawry
House Appropriations
- Senior Chair: Rep. Donny Lambeth
- Senior Chair: Rep. Dean Arp
- Senior Chair: Rep. Kyle Hall
- Senior Chair: Rep. Larry Strickland
- Chair: Rep Erin Paré
- Chair: Rep. Hugh Blackwell
- Chair: Rep. William Brisson
House Health and Human Services Appropriations
- Chair: Rep. Tim Reeder
- Chair: Rep. Larry Potts
- Chair: Rep. Donna White
Department of Health and Human Services
The new Secretary of the Department of Health and Human Services, Dr. Devdutta “Dev” Sangvai, was sworn in on January 12, 2025. Secretary Sangvai is a family medicine physician and a professor at Duke University, and he has worked to increase access to healthcare and develop the healthcare workforce. He has already reached out to NCCDD and we are looking forward to working with him.
Policy and Services
As part of the Consent Order in the Samantha R. case, there are reporting requirements to measure progress toward improving access to community-based services for people with I/DD. To meet these requirements and to demonstrate the commitment to serve people with I/DD, Inclusion Connects has published a detailed quarterly report that highlights progress in enhancing access to services and supports for the I/DD community in North Carolina.
Federal
Congress
Congress passed a Continuing Resolution (CR) that funds the government through March 14. 2025. The bill provides more than $110 billion in disaster aid as well as continued funding for the U.S. Department of Health and Human Services, including funds for community health centers and extended telehealth flexibilities.
The 119th Congress started on January 3, 2025 with swearing in new members of Congress, passing their rules for how they will run Congress in the next two years, and appointing Committee members.
Congressional Republicans have indicated that they plan to address the budget and funding through budget reconciliation which is a congressional procedure that makes it easier to pass legislation related to taxes and spending. Reconciliation allows lawmakers to avoid the filibuster in the Senate. Leadership has suggested that they will use one or two reconciliation bills to address border security, defense, energy policy, and government spending. There are indications that changes and reductions to Medicaid and the Affordable Care Act may be a way to pay for new priorities. Advocacy organizations will be working to protect Medicaid including how to prevent cuts to the program. Now is the time to reach out to your Congressional representatives to let them know the importance of Medicaid which provides critical support to people with disabilities and their families.
Autism CARES Act
The Autism Cares Act (CARES Act) was signed into law by President Biden on December 23, 2024. This will provide continued funding for monitoring, training, and research programs. The CARES Act will expand support research, increase public awareness, and increase capacity of training programs including the Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) program. The CARES Act was sponsored in the Senate by Senators Ben Ray Luján (D-NM) and Susan Collins (R-ME). In the House of Representatives, the bill was sponsored by the co-chairs of the Autism Caucus, Representatives Chris Smith (R-NJ) and Henry Cuellar (D-TX).
Think Differently Database Act
On January 4, 2025, President Biden signed the Think Differently Database Act into law. This legislation will create a national website which will include support services and resources for people with disabilities in every state. This bipartisan legislation was sponsored by Representatives Marc Molinaro (R-NY) and Mikie Sherrill (D-NJ) in the House and Senators Eric Schmitt (R-MO) and Jon Ossoff (D-GA) in the Senate.
Making Air Travel Safer for People Using Wheelchairs
On December 17, 2024, the U.S. Department of Transportation announced a final rule to ensure safe air travel for people using wheelchairs. The rule mandates better training for airline staff and others to help people with disabilities board and disembark from planes. Under this new rule, airlines have to provide “safe and dignified” assistance to people with disabilities. The rule provides new protections to travelers with disabilities whose wheelchairs are damaged by airlines. The final rule took effect January 16, 2025.
Advancing Community Living Options for People with I/DD
The National Leadership Consortium, an Affiliate of CQL | The Council on Quality and Leadership, through funding provided through a mini-grant from the North Carolina Council on Developmental Disabilities (NCCDD), conducted a review of organizations providing community living services to understand the strategies, structures, and practices that advance community living opportunities for people with intellectual or other developmental disabilities (I/DD). The information gathered is being used to increase and enhance community living options, including community housing, transportation, and healthcare. The information will also be used to build the knowledge of professionals, people with I/DD, and families about the characteristics and strategies of organizations that provide fully inclusive supports.
Activities of this initiative include:
- Completed in-depth interviews and focus groups with five organizations providing services across the state to learn about the practices, structures, service models, and innovations that promote and enable community living supports for people with I/DD.
- Analyzed all of the data collected and used the results of this analysis to provide information in a draft report about what works for community living in North Carolina.
- Three infographic sheets were created:
- Final report was issued: Advancing Community-Based Services
This is just one of many examples of the impact made by NCCDD"s Community Living Mini-Grant initiatives. Funding is provided to organizations that propose doing activities to advance NCCDD’s Community Living goal. These initiatives support systems change activities or build capacity to enable individuals I/DD to live full and meaningful lives in the community. Read more about NCCDD’s Community Living Mini-Grant Initiatives.
Hispanic Disability Outreach Update
Fondo Rossi: Empoderando a Individuos y Familias con I/DD
¿Tienes una discapacidad intelectual o del desarrollo (I/DD) o eres un miembro de la familia de alguien que la tiene? ¡El Fondo Rossi está aquí para ti!
El Consejo de Discapacidades del Desarrollo de Carolina del Norte (NCCDD) proporciona apoyo financiero basado en el reembolso para ayudar a las personas con I/DD y sus familias a asistir a:
- Conferencias educativas
- Seminarios
- Talleres de capacitación
¿Quién puede aplicar?
- Individuos con I/DD
- Padres de niños en riesgo de I/DD
- Miembros de la familia o tutores legales de alguien con I/DD
Detalles de financiamiento
- Hasta $1,000 para eventos en Carolina del Norte
- Hasta $1,200 para eventos fuera del estado
Los gastos reembolsables incluyen:
- Tarifas de conferencia
- Hotel
- Transporte
- Asistencia personal o cuidado de apoyo
Importante: ¡Guarda tus recibos! Solo se reembolsarán los gastos autorizados.
Cómo aplicar
- Visita: https://nccdd.org/initiatives/conference-funding/jean-wolff-rossi-for-participant-involvement-fund
- Envía tu solicitud:
- 15 días antes para eventos dentro del estado
- 30 días antes para eventos fuera del estado
¡No pierdas esta oportunidad! El conocimiento es poder: deja que el Fondo Rossi te ayude en tu camino.
Rossi Fund: Empowering Individuals and Families with I/DD
Do you have an intellectual or other developmental disability (I/DD), or are you a family member of someone who does? The Rossi Fund is here for you!
The North Carolina Council on Developmental Disabilities (NCCDD) provides reimbursement-based financial support to help people with I/DD and their families attend:
- Educational conferences
- Seminars
- Training workshops
Who Can Apply?
- Individuals with I/DD
- Parents of children at risk of I/DD
- Family members or legal guardians of someone with I/DD
Funding Details
- Up to $1,000 for events in North Carolina
- Up to $1,200 for events outside the state
Reimbursable expenses include:
- Conference fees
- Hotel
- Transportation
- Personal assistance or support care
Important: Save your receipts! Only authorized expenses will be reimbursed.
How to Apply
- Visit: https://nccdd.org/initiatives/conference-funding/jean-wolff-rossi-for-participant-involvement-fund
- Submit your application:
- 15 days in advance for in-state events
- 30 days in advance for out-of-state events
Don’t miss this opportunity! Knowledge is power and let the Rossi Fund help you on your journey.
February Self-Advocate Discussion Series: Safely Interacting with Police
During the next Self-Advocate Discussion Series webinar, learn what NCCDD is doing to train first responders, including law enforcement officers (police), on how to understand and interact appropriately with people with intellectual or other developmental disabilities (I/DD). This initiative aims to reduce the chance of anyone getting injured - or worse - during these interactions.
Meet and talk with Dustin Chandler of the Interaction Advisory Group. Chandler is a former law enforcement officer, a current Emergency Medical Technician, and the father of a child with I/DD. He trains first responders on how to understand and interact appropriately with people with I/DD. Attendees will learn tips on how people with I/DD and their caregivers can stay safe while interacting with law enforcement officers.
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 InteresAspectos Distacados Y Temas De Interes
