Kay McMillan, seated left, looks on as her mother, Sandy McMillan speaks at a news conference about a Medicaid program for people with disabilities on April 29, 2026. (Photo: Lynn Bonner/NC Newsline)
People with intellectual and developmental disabilities and their families stressed to North Carolina legislators the importance of helping the thousands of people waiting for assistance through Medicaid.
More than 20,000 people were waiting for what’s called a Medicaid Innovations Waiver at the end of last year, according to the state Department of Health and Human Services. That’s up from about 18,500 in mid-2024.
Speakers emphasized their reliance on the waiver, which pays for the direct care workers who help them live independently.
Kay McMillan, 31, graduated from N.C. State University, runs a small nonprofit, and lives in a townhouse with roommates. She uses a wheelchair and made a statement at a Wednesday news conference using a computer program.
“Medicaid does not just support my life. It makes my life possible,” she said. “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.”
Kay’s mother, Sandy McMillan, said she’d do anything to help her daughter.
“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.”
People sit on the list for years, and some die waiting to move to the top.
Disabled people are moving out of institutions, but the waiting list for services keeps growing
Some who make it off the waiting list find it hard to secure the help they need because there’s a shortage of direct support workers.
Rep. Zack Hawkins (D-Durham), who helps lead the legislature’s Intellectual and Developmental Disabilities Caucus, said he will reintroduce a bill aimed at cutting the waiting list and increasing pay for direct support workers to between $18 and $22 an hour “to ensure that everyone has access once they get a waiver slot.”
Michelle McWilliams has been Kay McMillan’s direct care worker for eight years. McWilliams said she makes $19 an hour.
At a forum Wednesday morning, Dr. Kate Westmoreland, medical director of the UNC Down Syndrome Clinic, told legislators of families who are paying thousands of dollars a year out of pocket for special formula or medical supplies, items the Medicaid waiver would cover.
“There’s a quiet crisis happening to families who are doing everything, working hard, paying for private insurance, trying to stay afloat,” she said, and they’re still slipping through the cracks as they wait for an Innovations Waiver.
Dr. Kate Westmoreland talks to NC legislators on about the need for Medicaid support for children with Down Syndrome on April 29, 2026. (Photo: Lynn Bonner/NC Newsline)“Waiting looks like a single mother, a school teacher, spending $10,000 every year on medical nutrition just so her 3-year-old can grow,” Westmoreland said. “Waiting looks like a truck driver father whose 2-year-old daughter is learning to walk but who cannot afford the ankle braces to give her the support she needs to take her first steps because they cost $1,500 out of pocket.”
Westmoreland asked legislators to end the waiting list for children, or to make them eligible for basic Medicaid once they’ve been approved to receive services through the Innovations Waiver.
People who have waivers do not have to meet income requirements for basic Medicaid.
The legislature used federal money to add waiver slots during the COVID-19 pandemic, said Talley Wells, executive director of the NC Council on Developmental Disabilities. But that extra money is no longer available.
Gov. Josh Stein included funding for 200 additional waiver slots in his proposed 2026-2027 budget, at a cost to the state of about $9.4 million.
Meantime, Republican legislators are looking for ways to reduce Medicaid costs.
Neither the House nor the Senate included additional waiver slots in their proposed budgets. The legislature did not pass a budget last year.
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