About 17,800 people with intellectual and developmental disabilities in North Carolina are on a waiting list for healthcare services. A bipartisan group of state lawmakers held a news conference Tuesday calling for funding to fix the problem.
A program called the Innovations Waiver provides a range of services to people with intellectual and developmental disabilities. Some examples of those disabilities include cerebral palsy, brain injuries and autism spectrum disorder. The program helps pay for things like in-home caregivers.
Niasha Fray's 11-year-old daughter has Down syndrome and has been on the waiting list for years.
"Mali has been on the registry of unmet needs in North Carolina since June of 2018, waiting along with 17,000 others to receive the innovations waiver," Fray said. "This waiver is crucial for ensuring Mali's continued independence and ability to live at home rather than being institutionalized."
The legislature's caucus for intellectual and developmental disabilities has filed a bill to reduce the waiting list by adding 1,000 people to the program.
"Individuals that we heard from today have been on the waiting list for over 10 years, some for 14 years," said Rep. Sarah Crawford, D-Wake. "Some loved ones are concerned that their child with developmental disabilities may not live long enough to even benefit from the Innovations Waiver. We must create more spots."
The bill would also increase pay for direct care workers to $18 per hour, something advocates say is needed to address a shortage of workers.
"It was a number where we can compete with Target and McDonald's," said Talley Wells, executive director of the N.C. Council on Developmental Disabilities. "And we know this is such a more important job — not that those aren't important jobs, but this is about people's lives."
Tuesday's press conference was part of an advocacy session for supporters of people with intellectual and developmental disabilities.
The goal of the session is for family members, direct support professionals as well as advocate organizations to talk about challenges people with disabilities face.
Holly Watkins is with Arc of North Carolina, which offers services like care management to people with intellectual and developmental disabilities. She said they talked about the lack of direct support professionals at the listening session.
"Those are the individuals that will come into the home and help provide needed care, that could be helping them bathe, helping them get dressed, maybe taking them to their job," she said.
Correction: A previous version of this story misspelled the name of Niasha Fray's 11-year-old daughter Mali.
