March 2025 Highlights and Hot Topics
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- Message from the Executive Director
- Public Policy Update (as of 3/21/25)
- NCCDD and Duke University Release Comprehensive Report on I/DD Data to Enhance Advocacy Efforts
- Hispanic Disability Outreach
- April Self-Advocate Discussion Series: Transportation and Travel
- Boletín en español
- Newsletter in Accessible Audio
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Message from the Executive Director: NOW is our moment!
Talley Wells, NCCDD Executive Director
March is Developmental Disability Awareness Month. This is a critical time to make our larger community aware of the experiences, gifts, talents, challenges, and awesomeness of individuals and families with intellectual and developmental disabilities. And, of course, there is no more important time than now.
Now is when Medicaid is under scrutiny. Medicaid is the lifeblood of developmental disability services and supports.
Now is when North Carolina is deciding how it will invest its taxpayer funds into the community. Our economic impact shows that for every dollar invested in developmental disability services by the state an additional $1.17 to $1.63 is generated in the community. Imagine that, if the state pays $1.00 to a direct support professional (DSP), the state generates an additional $1.17 to $1.63. That’s a good investment!
Now is when our community members are struggling to find DSPs.
Now is when we have an 18,771 person waiting list for the Innovations Waiver.
We have aging caregivers and aging people with I/DD who are deeply worried what will happen when their family caregivers pass right now.
Now is difficult.
But now is not just a time of difficulty. Now is also when we have extraordinary advocates and leaders. We have never had better leadership at the state for developmental disabilities. We have never had stronger advocates. We have green shoots and strong programs across our communities for people with and without developmental disabilities to have fun together, work together, and live together.
We will remember now because now may be the most critical time ever for our community to advocate, work, rise above injustices, and show the world and our local communities why people with developmental disabilities, their families, and our community are so awesome. We need to raise developmental disability awareness now! Because now is our moment.
What are you doing right now to meet this moment? Email me at [email protected] and let me know.
Talley Wells, NCCDD Executive Director
Public Policy Update (as of 3/21/25)
FEDERAL
Congress passed another continuing resolution, signed by the President on March 14, 2025, which funds the federal government through the end of the fiscal year (September 30, 2025). This act averted a government shutdown. The act maintains overall base discretionary budget authority at approximately $1.6 trillion, allocating $893 billion for defense and $708 billion for non-defense spending. But it implements a $13 billion reduction in non-defense discretionary spending and a $6 billion increase in defense spending, aligning with the administration's priorities.
The process for funding a budget for fiscal year 2026, which begins on October 1, 2025, is underway. The House passed a budget resolution which calls for $880 billion in cuts to Medicaid (over 10 years). The resolution instructs committees to submit the legislation reflecting these cuts to the House Budget Committee by March 27, 2025. Reductions this large to Medicaid would likely result in major cuts to eligibility, benefits, or provider payments.
The next step is for the Senate to take up the House-passed budget, likely making amendments, which may happen in late March, after the joint recess.
The time is now to let those in Congress know the importance of Medicaid to people with intellectual and other developmental disabilities (I/DD)!
STATE
Budget
Governor Stein’s budget was released and includes proposed allocations that would affect people with I/DD.
- Over $37 million for 200 additional Innovations Waiver slots and 75 additional Traumatic Brain Injury waiver slots (funding increase would occur over a two-year period);
- $5 million in nonrecurring dollars for Direct Support Professionals (DSPs) to recruit and retain DSPs and allow NCDHHS to offer scholarships, paid apprenticeships, and related training programs to strengthen the DSP workforce;
- $10 million to increase the pipeline of high-demand health professionals;
- $1 million each year of the biennium to the NC Area Health Education Center (AHEC) to expand the nursing workforce;
- Funding necessary to sustain the Healthy Opportunities initiative, expand to additional western NC counties where the program is not currently operational, and plan for statewide expansion;
- Funding the Medicaid program to continue current levels of service; and
- An additional $5.7 million to stabilize the vocational rehabilitation workforce and help reduce vacancy rates for counselors and other DSPs and to sustain community provider rates. This recommended investment will enable the state to pull down an additional $21 million in federal vocational rehabilitation funding.
This is just the first step in the budget process. The legislature will review the Governor’s budget and continue to work toward an agreement on a state budget.
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 for potential decreases in federal Medicaid dollars. Modifications may include reducing optional services, reducing eligibility groups, increasing provider assessments, and reducing reimbursement rates. The 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 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 DMV to develop a designation of autism on licenses, upon request. Also includes training on autism for officers.
HB54 – Funds for NC APSE – This bill would provide funds for evidence-based supported employment services for individuals with serious mental illness, intellectual disabilities, or developmental disabilities. Includes appropriation of $125,000 to DMH/DD/SUS for a grant to NC APSE.
HB60 – Medicaid Dental Rates – This bill would raise Medicaid reimbursement rates paid to dental care providers from 35% to 46% of the average dentist charges in 2023 through a recurring appropriation.
HB239 – Change to EC Funding Formula – This bill would modify the children with disabilities funding formula. It would appropriate $25M recurring to DPI to be allocated to public school units for children with disabilities funding.
SB239 – Raise DSP Pay to $25 Per Hour – This bill would provide a wage increase to DSPs that serve Medicaid beneficiaries receiving services under the North Carolina Innovations Waiver. Requires an attestation that at least 90% of rate increase goes toward DSP wage increases.
SB246 – Create Jobs Serving People with I/DD – This bill would add 10,000 Innovations Waiver slots over two years (5K each year) with a prescribed slot allocation method. Would also require LMEs to pay Innovations Waiver providers a rate to yield a DSP hourly wage of $20.
NCCDD and Duke University Release Comprehensive Report on I/DD Data to Enhance Advocacy Efforts
The Duke-Margolis Institute for Health Policy has published a groundbreaking report titled "I/DD Data Initiative: An Inventory of I/DD Data and Recommendations to Improve Advocacy Efforts."
The report, commissioned by the North Carolina Council on Developmental Disabilities, provides an extensive inventory of publicly available data on intellectual and developmental disabilities (I/DD) and offers strategic recommendations to bolster advocacy efforts for the I/DD community in North Carolina.
The report’s key findings include the following:
- Identification and cataloging of state-specific and national-level data sources, highlighting the availability and gaps in current data.
- Detailed analysis of specific data elements such as NC Innovations Waiver Slot History, availability of institutional and intermediate care facility beds, CAP/DA and CAP/C recipient data, and economic data for I/DD services.
- Insights from community engagement activities, emphasizing the need for comprehensive data to inform advocacy and policy interventions.
Based on the research and the report, the research team recommends to:
- Capitalize on the shift to Whole Person Care by ensuring data is available and comparable across settings, programs, and regions;
- Increase data-driven advocacy by providing a broad description of the NC I/DD population, including those not currently receiving formal supports;
- Ensure clear language and definitions are agreed upon and reinforced by key partner organizations, and
- Invest in Timely and Actionable Research by focusing on research projects that address the most pressing needs identified by the I/DD community.
The report underscores the critical need for timely and accessible data to guide policy interventions and improve the health and well-being of individuals with I/DD. It highlights the challenges faced by the I/DD community, including long waiting lists for services and inadequate workforce support, and provides actionable strategies to address these issues.
Mes de Concientización sobre Discapacidades del Desarrollo: ¡Estamos aquí todo el año!
Cada marzo, se celebra el Mes de Concientización sobre Discapacidades del Desarrollo para resaltar las contribuciones y la importancia de las personas con discapacidades del desarrollo en nuestras comunidades. Establecido en 1987, este mes busca aumentar la conciencia y fomentar oportunidades para que todos alcancen su máximo potencial.
El tema de 2025, "¡Estamos Aquí Todo el Año!", subraya el papel continuo de las personas con discapacidades del desarrollo en nuestra sociedad. Las discapacidades del desarrollo abarcan condiciones como el autismo, síndrome de Down, parálisis cerebral y discapacidades intelectuales, las cuales pueden influir en el aprendizaje, la comunicación o el comportamiento.
Acciones para apoyar este mes:
- Comparte información para romper estereotipos.
- Promueve espacios accesibles para todos.
- Usa un lenguaje respetuoso y apropiado.
Sobre el North Carolina Council on Developmental Disabilities trabaja para mejorar las vidas de las personas con discapacidades del desarrollo, promoviendo programas de empleo, liderazgo y participación comunitaria. Más información en: www.nccdd.org
Developmental Disabilities Awareness Month: We're Here All Year!
Every March, Developmental Disabilities Awareness Month is celebrated to recognize the contributions and impact of individuals with developmental disabilities in our communities. Since its establishment in 1987, this month aims to raise awareness and foster opportunities for everyone to fully thrive.
The theme for 2025, "We're Here All Year!" highlights the vital and ongoing role of individuals with developmental disabilities in society. These disabilities include conditions like autism, Down syndrome, cerebral palsy, and intellectual disabilities, which may affect learning, communication, or behavior.
How can you support this month?
- Share information to challenge stereotypes.
- Promote accessible environments for everyone.
- Use respectful and accurate language.
About NCCDD: The North Carolina Council on Developmental Disabilities works to improve the quality of life for individuals with developmental disabilities through programs that promote employment, leadership, and community involvement. Learn more at: www.nccdd.org
April Self-Advocate Discussion Series: Transportation & Travel
Back by popular demand – transportation and travel for people with disabilities! On April 16, 2025, the Self Advocate Discussion Series centers on all types of transportation, including ground, water, and air transportation, as well as public, private, accessible, and community-supported transportation systems. Experts will share their experiences, insights, and advocacy tips.
As always, we’ll have time to hear from YOU! What does ideal transportation mean to you as a self-advocate? What do you need more of when it comes to getting around and going where you want to and when you want to go? If you are passionate about improving transportation and traveling for people with disabilities in North Carolina, please join us!
Don’t delay - register 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 marzo de 2025
