Newsletter Mar/Apr 2025

The North Carolina Council on Developmental Disabilities (NCCDD) recently sent out their newsletter with information that is important to our Fragile X Community on both the Federal and State budgets and pending bills in the North Carolina General Assembly. We are sharing their information with our thanks to executive director, Talley Wells.

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.