By Ashley Fredde
Kay McMillan is a young woman in her early 30s who graduated summa cum laude at NC State and now runs her own nonprofit combining her two passions — disability rights and teaching youth leadership skills. She lives in a Cary townhouse with two housemates she calls her “Monica” and “Rachel” after characters in the hit ’90s sitcom Friends.
In her free time, which she admits is limited due to her work, she enjoys playing Boccia ball, watching Netflix and spending time with her many friends.
All that is made possible by North Carolina’s Innovations Waiver, which provides McMillan with direct support providers who help her with daily tasks of living like getting out of bed, eating and dressing. The waiver provides these services and a number of other supports to people with intellectual and developmental disabilities.
“It might be a little obvious looking at me that I have a significant physical disability. I use this power wheelchair and communication device — both Medicaid funded,” she said. “My awesome life is made possible because of the home- and community-based supports.”
McMillan was among hundreds of individuals with intellectual and developmental disabilities, their families, and providers from across North Carolina who convened at the General Assembly late last month to speak with lawmakers for what’s become an annual advocacy day with the legislative body’s IDD Caucus.
A parade of advocates called on state leaders to continue to fund Medicaid and to expand access to the Innovations Waiver, which makes community living for people like McMillan a reality. They also called on lawmakers to strengthen the shrinking direct support workforce.
The appearance was the latest plea from disability advocates, who late last year also pushed lawmakers to approve a Medicaid funding rebase to prevent service disruptions.
The annual Medicaid funding readjustment was caught in a struggle between Republican leaders in the state House and Senate who could not reach agreement on spending priorities for the biennium that started July 1, 2025.
Lawmakers have yet to pass a comprehensive budget for the two-year period, making North Carolina the only state without a spending plan. Instead lawmakers approved a “minibudget” in late July that allocated $500 million toward the annual rebase for the fiscal year that ends June 30. But that wasn’t enough to fully fund the program, which sent a wave of angst through the state’s disability community.
Lawmakers ultimately passed an additional $319 million in the early weeks of this year’s short session to fully fund Medicaid the program through the end of the current fiscal year, which closes on June 30. Advocates say issues are unresolved and unfunded as budget negotiations continue.
In his 2025 proposed state budget, Gov. Josh Stein included several funding recommendations to benefit people with intellectual and developmental disabilities. Those included:
- $5 million in nonrecurring funds for education efforts to recruit, train and support direct support professionals.
- Funding the Medicaid program to continue current levels of service.
- Over $37 million for 200 more Innovations Waiver slots and 75 more Traumatic Brain Injury Waiver slots.
In both the North Carolina House and Senate 2025 budget proposals, only the Senate allocated funding for 200 Innovation Waiver slots. In the past decade, adding openings in the Innovations Waiver program has been painfully slow. Modest increases, such as the 350 slots added in 2024, have done little to whittle down the ballooning waitlist.
Waiver waitlist
While approximately 14,000 North Carolinians have received an Innovations Waiver, nearly 21,000 remain on a waitlist.
That waitlist includes a growing number of families who, advocates say, face a close to two decade wait before receiving a waiver. During that wait, families can experience compounding costs — medical, physical and emotional.
“There’s a quiet crisis happening to families who are doing everything, working hard, paying for private insurance, trying to stay afloat and still their children, my child, slipping through the cracks because they’re waiting,” testified Dr. Kate Westmoreland, medical director of the UNC Down Syndrome Clinic.
“If a child qualifies for basic Medicaid based on income, they have access to all medical care, all the equipment, and therapies even while waiting for the full Innovations Waiver services,” Westmoreland said. “But if a family earns above the line they get no support, no bridge, just a decade-long wait.”
That can look like a single mother who works as a school teacher spending $10,000 on medical nutrition for her toddler, a father and truck driver whose child has begun to learn how to walk but cannot afford the $1,500 ankle braces needed for support, parents lying awake listening for footsteps because they cannot afford the $15,000 safety enclosure bed their child needs. These stories are among many Westmoreland said she hears in her clinic.
“End the waitlist for children on the Innovations Waiver. Or, at a very minimum, extend basic Medicaid coverage to every child once they are accepted on the waiver waitlist — give families a bridge, give children a chance,” Westmoreland told lawmakers.
While some services are available to waitlisted families, such as community living supports and respite hours, that access can be affected by the growing shortage of direct support professionals.
Meredith Mulford’s 11-year-old daughter, Eloise, has been on the Innovations Waiver waitlist for seven years. In the past five years, Eloise has received only one out of every 25 direct service hours she was allotted. The family’s service provider, Easterseals, attributed the gap to a workforce shortage.
“I can’t see a future where I re-enter the workforce in any full time capacity,” Mulford said. “At 46, as someone who loves to work, that feels devastating. I’m burned out, I’m tired, I’m frustrated more than I should be. It has shaped and changed every aspect of my relationship with both my husband, who works full time to support us and keep insurance, and my older daughter.”
ISO direct support providers
North Carolina would need 20,000 more direct support professionals to meet the need by 2028, according to a North Carolina DHHS report. The persisting challenges to growing the direct support workforce are low wages, limited career development and high turnover rates, the report stated.
The shortage spreads thin the workforce that already exists. An additional projected shortage of 12,500 to 17,500 registered nurses in the state by 2033 further complicates access. Even individuals or families that have been granted the Innovations Waiver, or other services such as skilled home nursing care, have difficulty filling their hours.
“I have funding. I have the hours, I don’t have nurses,” Jeff Olander told lawmakers. “For years, on paper, I’m relying on 84 hours a week of nursing care. In reality, I can staff about half. So the rest I pay for out of pocket. I fill it with aides, who are no substitute for skilled care.”
Olander and his brother were diagnosed with spinal muscular atrophy. After his father died, the two brothers and their mother attempted to use the system as best they could.
“Nurses cannot be found. My mom is in her 70s, and she can’t provide physical care. So when shifts go unfilled, there’s no one to step in,” Olander said. “Weeks after his 31st birthday, my brother died at home with just me and my mom.
“This is what system failure looks like in real life. Home care isn’t just like other work. It’s not just a shift. It’s providing personal care right in someone’s daily life,” he said.
Medicaid uncertainty
Stein’s 2026 budget proposal included over $26 million for 200 new Innovations Waiver slots, as well as $25 million for Transitions to Community Living, a program that offers supportive housing, tenancy assistance and wraparound mental health services for people transitioning from or at risk of entering institutional care.
The North Carolina House and Senate have not yet released budget proposals for the 2026-27 period.
“I do fear that more cuts are coming from the federal government, and more than a billion dollars will be needed next year to fund Medicaid,” McMillan told lawmakers.
“Here is the truth. The Medicaid system is already broken, and if there are any cuts to Medicaid, it will collapse,” she said. “Because of Medicaid, I have a life, not just an existence.”
McMillan has lived independently since she was 18 because she’s had access to direct support professionals.
”Thanks to the Medicaid Innovations Waiver, direct support professionals help me with daily needs, getting out of bed, eating, dressing and even my job,” McMillan said.
At the current wages — which average between $14.80 and $16.62 per hour — there’s a lack of direct support professionals willing to work the hours needed for people like McMillan.
“My 64-year-old mom is my backup support and lives an hour and a half away. Last week, my mom made that drive not once, or twice, but three times to cover open DSP shifts. I’m worried because my parents cannot be my backup forever, and here is what keeps me up at night.”
She pointed out that home- and community-based supports are optional under federal rules.
”My right to get out of bed in the morning is ‘optional.’ That means when budgets get tight, our homes, our lives are on the chopping block first,” McMillan said. “If you cut Medicaid, you are not saving money. You are sentencing people to nursing homes, a life of isolation where no one can reach their full potential.”
“I am so scared that if these cuts happen, I will end up in an institution,” she told lawmakers. “So I am asking you from my chair, with my device, with my whole heart, protect Medicaid funding.”
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