By Avi Bajpai for the Raleigh News & Observer

Advocates and families of people with disabilities renewed their push this week for increased state funding for a backlogged program that is relied upon by thousands, and has an even greater number of people on the waiting list.

The N.C. Innovations Waiver, a Medicaid-supported program that helps people with disabilities get long-term care and other support at home or in a community-based setting, as opposed to an institutional one, currently serves more than 14,000 people in the state.

But people with intellectual or developmental disabilities who qualify for the program’s support are being added to its waitlist much faster than new slots are being created by the state.

There are 18,771 people currently on the waitlist, according to the N.C. Department of Health and Human Services.

Lawmakers spent hours on Wednesday meeting with and hearing from people with disabilities and their family members, caregivers, and hundreds of advocates for the intellectually and developmentally disabled community.

For the second year in a row, lawmakers held a listening session as members of the community filled the seats of the Legislative Building’s large auditorium on Wednesday and shared their experiences with the waiver program. One of the stories brought up was of Ruby Loftin, a Winston-Salem woman who spent 19 years on the waiting list and died in 2021.

“This is a human rights issue, and it’s also an economic development issue,” Democratic Rep. Sarah Crawford said during a news conference that followed with other lawmakers, advocates, and members of the community. “People with disabilities deserve the same rights that all of us have. They deserve the right to live a full life, they deserve the right to make choices about where they live, whom they live with, and where they work.”

“And we have a responsibility here in the North Carolina General Assembly to ensure that the services that our families and people with disabilities rely on are fully funded,” said Crawford, who is also the CEO of TLC — the Raleigh nonprofit founded in 1969 as the Tammy Lynn Center that today serves almost 1,400 clients with disabilities like autism and Down syndrome.

Father whose son received waiver urges plan to eliminate waitlist

Ray Hemachandra was one of several caregivers and family members who came to the General Assembly on Wednesday to share the stories of their loved ones with disabilities. Hemachandra and his son Nicholas, 24, who is autistic and intellectually disabled, traveled to Raleigh from their home in Arden, just south of Asheville.

Hemachandra said the Innovations Waiver has made an “incredible difference” in the life of his son, who received the waiver when he was 9.

Thanks to the support he gets from the program, Nicholas is able to actively participate in his community, Hemachandra said. Nicholas works at an ice cream shop in Asheville’s Southside, volunteers at a local food bank and the Asheville Buncombe Community Christian Ministry, swims at the local YMCA and plays sports.

“When we go out into the community, people are more likely to recognize Nicholas than to recognize me, and are overjoyed to see him,” Hemachandra said. “Our lives are intertwined, but Nicholas has his own life, and it’s a life of joy.”

Hemachandra said his own son’s experience shows how much the waiver can help others who need support.

In addition to urging lawmakers to fund more slots for the program, Hemachandra said he’s hopeful the state will be able to move away from revisiting the funding issue on a yearly basis, and can instead adopt a plan to eventually clear the waitlist entirely.

Two bills filed with Democratic and GOP support, more planned

Rep. Zack Hawkins, a Durham Democrat who co-chairs the General Assembly’s bipartisan IDD Caucus, said on Wednesday that he plans to reintroduce an omnibus bill in the coming days that would expand the waiver program and address a number of other IDD issues and priorities.

Lawmakers in the N.C. Senate have already introduced bills seeking to address two major, pressing issues: funding to create more waiver slots, and boosting pay for the direct care workers, also known as direct support professionals, who undergo training to work with and help people with disabilities.

Senate Bill 246 would appropriate hundreds of millions in state funds to create 10,000 waiver slots over two years and require service providers to be paid at rates that are sufficient to pay the direct care workers they employ at least $20 per hour.

Another proposal, Senate Bill 239, wouldn’t add any waiver slots but would use state funds to require direct care workers to be paid at least $25 per hour.

Crawford said that pay for many direct care workers in the state is still hovering between $12 and $14 per hour. She said it’s crucial that lawmakers take action to help attract and retain more qualified care workers by ensuring more competitive pay is available.

“These are hard jobs; they are labor intense, they are emotionally intense,” Crawford said. “And, you can go get a job at McDonalds or Target making more money without having to do the caregiving.”

Both of those bills have been introduced by Democratic Sen. Lisa Grafstein, a Raleigh attorney who is litigation counsel at Disability Rights North Carolina, and Republican Sen. Tim Moffitt of Hendersonville.

Sen. Jim Burgin, an Angier Republican who is a member of the IDD Caucus, pointed out during Wednesday’s press conference that not all of the nearly 19,000 people on the waiver wait list right now are without any support. About 35% of those waiting for a slot do get some services, he said, but don’t get the full waiver.

Burgin echoed the point made by others of how disruptive it can be for people with disabilities to lose their caregivers because they could no longer afford to stay with the job, and left to pursue a higher-paying opportunity.

He said he spoke with one family that had nearly 50 different people providing care for them over the years.

“By the time someone gets to know someone, develop a relationship with them, start caring for them, learning how to care for them, and then start all over, that’s got to be traumatic for everybody involved to it, especially the disabled person, but also the family, the caregiver, and other people,” Burgin said. “So, we have to figure that part of it out.”

The preceding article originally appeared on March 28, 2025 at the Raleigh News & Observer’s website and is made available here for educational purposes only. This constitutes a ‘fair use’ of any such copyrighted material as provided for in Title 17 U.S.C. section 106A-117 of the U.S. Copyright Law. Any views or opinions expressed here are those of the authors and do not necessarily reflect the official policy or position of the Carolina Leadership Coalition.