Disability advocates urge NC lawmakers for Medicaid waiver funding
Over 20,000 North Carolinians with disabilities wait for Medicaid services that allow them to live independently in their communities rather than nursing homes.
RALEIGH, NORTH CAROLINA — People with intellectual and developmental disabilities and their families urged North Carolina legislators Tuesday to provide funding for community living assistance as the state’s waiting list for services continues to grow.
More than 20,000 people were waiting for a Medicaid Innovations Waiver at the end of last year, according to the state Department of Health and Human Services. The waiting list has grown from approximately 18,500 in mid-2024.
The waiver program pays for direct care workers who help people with disabilities live independently in their communities rather than in institutional settings.
Personal Stories Highlight Need
Kay McMillan, 31, who graduated from N.C. State University and runs a small nonprofit, spoke at Wednesday’s news conference about her dependence on the program. McMillan lives in a townhouse with roommates and uses a wheelchair.
“Medicaid does not just support my life. It makes my life possible,” she said using a computer program. “Without it, I do not just lose modest services. I lose my independence, and you would be sentencing me to a nursing home where I could not continue to contribute to my community and continue to reach my potential.”
Sandy McMillan, Kay’s mother, emphasized the limitations families face when providing care without adequate support services.
“But I cannot be her entire system of support,” Sandy McMillan said. “Medicaid cuts would force family members to become full-time care givers. And while our love is infinite, our bodies are not.”
Growing Waiting List Crisis
People remain on the waiting list for years, and some die before receiving services. The growing numbers reflect both increased demand for community-based care and ongoing funding challenges for the program.
Even those who move off the waiting list face hurdles securing the assistance they need due to a shortage of direct care workers. The workforce shortage compounds the challenges facing people with disabilities who want to live independently in their communities.
The Medicaid Innovations Waiver represents a shift away from institutional care toward supporting people with disabilities in community settings. Advocates argue this approach not only improves quality of life but also allows individuals to contribute more fully to society.
Legislative Action Needed
The news conference aimed to pressure state lawmakers to increase funding for the waiver program during the current legislative session. Disability rights advocates stressed the urgency of addressing both the waiting list and the workforce shortage that affects service delivery.
The Department of Health and Human Services data shows the persistent growth in demand for these services, highlighting the gap between available resources and community need for disability support services across North Carolina.
