By Rose Hoban
It takes some serious logistics to get Erica Conway from her home in Buncombe County down to Raleigh so she can make the rounds of the state legislative complex in her hot pink wheelchair.
Conway, 35, had a traumatic brain injury when she was 16 years old. Since then her mom, Rebecca, has cared for her — with help. Erica’s new caregiver, Darlene Epley, was only in her first week of work when they drove down to attend an advocacy day earlier this month.
After years of being on a waitlist, Erica got a North Carolina Medicaid Innovations Waiver, which allows her to participate more in her community. For example, a few years after her injury, she was able to be in a play.
“I was Lucy in ‘You’re a Good Man, Charlie Brown.’ I was very loose-y,” Erica said, with a devious grin.
“I have seen [Erica’s] life enhanced by the things that have been added to it, by funding, by policy changes, by increasing pay for direct support workers,” Rebecca said. “We have accomplished a lot, but there’s so much further that we can go.”
Rebecca also talked about how she benefited from recent policy change made by the legislature that allows for family members to get paid for some of the caregiving for their loved ones. Now she can get paid for the care she provides for Erica.
Erica said they came to Raleigh to advocate for people like her who are still waiting for services.
“I’m advocating for others that don’t have a voice,” she said. “I’m here to tell you, those state legislators, people need to realize that we will rise up if we have to.”
That’s been the mantra of advocates who’ve made their way to the legislative building on Jones Street over the past few weeks to press for increased funding for some of North Carolina’s most vulnerable. While many expressed gratitude to lawmakers for $835 million in mental health funding over the past two years, they told them that more was needed to whittle down long waitlists, pay caregivers a living wage and allow people with disabilities to live in dignity.
Looming cuts spur anxiety
Many of the advocates visiting lawmakers say they’re worried about cuts to Medicaid proposed in Washington. Earlier this month, the Republican majority in the U.S. Congress narrowly passed a resolution that laid out their budget priorities, including a potential $880 billion in cuts to Medicaid, a program that provides support for millions of North Carolina low-income children, some of their parents, people with disabilities like Erica and many low-income seniors in nursing homes.
After the hearing, Nicholas demonstrated his juggling skills to the crowd. Credit: Rose Hoban / NC Health News
Some advocates said in their conversations they were making a financial argument for support.
“We need to find out what services can I give you that’s going to get you restabilized quickly and then get you back productive? And let’s get that money in place, and let’s get that going,” said Johnnie Thomas, who’s part of the Wake County Consumer and Family Advisory Committee, one of the groups that gives community feedback to the state’s mental health management agencies. “We also have to be understanding that the federal government puts a lot of money into this, and if they cut their budgets, North Carolina’s gonna cut their budgets.”
Others, though, were making more emotional connections with lawmakers, like Benita Purcell, an advocate who came to Raleigh to share stories with lawmakers.
“Senator Moffitt, I didn’t have an appointment. I just knocked on his door, and he’s like, ’Come in,’” Purcell told NC Health News. “And of course, he’s a very sympathetic ear.”
It turns out Purcell and Tim Moffitt (R-Hendersonville) connected over how they both have an intellectually disabled sibling living in a group home. In the past, Moffitt has pressed his colleagues for better pay for direct support personnel who work with people with disabilities.
“It was just that connection,” Purcell said. “And I’m like, I know I can reach out to you if I have issues now.”
New group hones the message
In the past decade, openings in the Innovations Waiver program have come slowly. From 2013 to 2024, the number of slots went from 12,488 to 14,736, a growth rate of 18 percent over the decade. Meanwhile, the number of people on the waitlist has ballooned from 9,278 in 2013 to 17,902 in 2024, a growth rate of 93 percent.
As of Wednesday evening, the number of people on the waitlist was 18,771.
Last year, 350 slots were added. At this rate, it would take decades for people getting on the waitlist now to finally receive services.
Enter the IDD Caucus, a group of lawmakers with a common interest in improving outcomes for people with intellectual and developmental disabilities. Revived in 2020, the group meets informally to work on legislative issues that could get more help for people with disabilities.
Many of the leaders of the caucus have personal connections to the issue: Rep. Zack Hawkins (D-Durham) has two sons with autism. And there’s some real firepower in the group; House Speaker Pro Tempore Rep. Mitch Setzer (R-Catawba) talked on Wednesday afternoon about his niece who was born without a thyroid and lived until last year, surviving twice as long as her parents had been told she would. Senate Minority Leader Sydney Batch (D-Raleigh), who represents children and families in her law practice, is also part of the leadership.
Advocates and other lawmakers who are part of the bipartisan IDD Caucus are hoping the presence of legislative leadership in the group can make a difference when the budget gets written this year.
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Listening session
On March 26, several hundred people with disabilities and their families crowded into the legislative auditorium in the General Assembly building for a listening session, where multiple people with disabilities and their caregivers gave sometimes gut-wrenching testimony to lawmakers about the challenges they face.
One speaker was Durham resident Demi Eckhoff, who has a form of congenital muscular dystrophy. She uses a wheelchair and depends on a ventilator.
“Through Medicaid, I received an Innovation Waiver after having to hospitalize myself in order to get it,” Eckhoff told lawmakers. “You may say this is a drastic measure, but this is what it takes in order to receive equitable, independent care for someone with a significant disability.”
Parents of older people with disabilities expressed their concerns about what will happen to their children after they’re gone.
“As Jerry continues to age, we are seeing more health issues, which require more support,” Nancy Baker, 76, said about her 56-year-old son. “I worry about who is going to carry on advocating for Jerry.”
Lawmakers who’ve identified themselves as part of the IDD Caucus sat through the two-hour meeting, sometimes wiping away tears as people spoke.
Most of what the speakers were asking for was increased pay for direct support professionals and for lawmakers to commit to addressing the backlog of 18,771 people waiting for services on the Innovations Waiver, which facilitates people with disabilities living in the community, with support.
Eckhoff now works part-time as a dietitian, has a master’s degree and is working toward a doctorate degree in public health — in large part because she has the help of a direct support professional.
“Because of my job, I’m able to pay taxes now, as well as be a productive and influential individual in my community,” she said.
Voices of Caregivers
Carol Conway, mother of a 37-year-old son with a rare genetic disorder, has been collecting stories from other families of disabled people. Her son Paul is “one of 30,000 ‘working age’ adults who have exceptionally high needs,” Conway told lawmakers. “You almost never hear about them, so I’m bringing the parent voices to you today.”
Then, she shared comments those parents have made over Zoom calls.
“Caring for a severely disabled child has taken a major toll on my family. We are siloed because we must tag-team the caregiving just to survive.” —Libby
“I am divorced, but the ‘good’ thing about it is that when my son is with me, his mom gets to rest.” —Danny
“I was a nurse but had to retire early to care for my profoundly disabled daughter because there were no [direct support professionals] able to handle the high level of care in my rural area.” —Mary
“Why would you work with my daughter when for the same pay, you could work with someone much easier?” —Beth
“It always falls back on ‘natural support’ — which is really just me, my husband and my ex. We wonder what will happen to him after we’re gone.” —Kimberly
Pressing for support
Advocates and members of the IDD Caucus are pushing for dollars to increase the hourly wages for direct service professionals, who make less than $15 an hour.
Rep. Sarah Crawford (D-Raleigh) runs the Raleigh-based TLC (formerly the Tammy Lynn Center), which supports people with disabilities and their families. She said she believes there’s a pathway to whittling down the waitlist over the coming decade.
“It would cost the state around $650 million, maybe a little bit higher,” she said during a news conference with disability advocates on Wednesday afternoon. “That’s based on what we budgeted a few years ago when we did the 1,000 slots. So $650 million, of course that’s the state’s part — there is a federal match that comes with that — that’s what we’re talking about to eliminate the Innovations Waiver waitlist and get those folks services. We can’t do that without also investing in [direct service professionals].”
Senators Lisa Grafstein, (D-Raleigh) an attorney for Disability Rights North Carolina outside the legislature, and Moffit together introduced Senate Bill 246 to add 5,000 Innovations Waiver slots as of Oct. 1. The bill would also raise support workers’ wages to an average of $20/hour. The bill would require $652 million in appropriations by the end of 2027.
A different bill filed by the pair, Senate Bill 239, proposes raising the support workers’ wages to $25/hour by 2027, without adding additional waiver slots. The price tag would be more than $420 million by 2027.
But there are strong headwinds pushing back against IDD Caucus priorities — not the least of which is the need generated by Hurricane Helene.
“This would be somewhat easier if we didn’t have all of the needs out in western North Carolina that we’re dealing with,” Sen. Jim Burgin, an Angier Republican, said at the news conference. “I know everybody knows that, and our hearts and prayers continue to go out to the folks out there, but this is its own crisis that has been going on for years that we need to deal with.”
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