Hundreds of advocates for people with intellectual and developmental disabilities visited the North Carolina legislature this week to lobby lawmakers to provide more funding for a program that has a years-long waiting list.
Ray Hemachandra and his son Nicholas drove from their home in Asheville for the annual lobbying day. Nicholas has autism and other intellectual disabilities, and since he was 10 he's been receiving services through a Medicaid program called the Innovations Waiver.
"Nicholas has his own life, and it's a life of joy, and largely that's because of the Innovations Waiver he received in childhood," Ray Hemachandra said. "He deserves full credit for all of that, but we recognize the gift of incredible direct support professionals."
The Innovations Waiver provides home care and other services that allow people with disabilities to live at home, rather than in institutional environment. For Nicholas, the services have helped him to get a job at an ice-cream shop and volunteer for local charities.
He's one of 14,000 people in North Carolina who receive the Innovations Waiver services. But another 19,000 people who qualify have been stuck for years on a waiting list.
"If we continue creating (waiver slots) at the rate we've been creating them, you're very likely to die before" gaining access, Hemachandra said.
A bipartisan group of legislators is pushing for more funding to reduce that waiting list, including Rep. Sarah Crawford, D-Wake.
"This is a human rights issue, and it's also an economic development issue," she said. "People with disabilities deserve the same rights that all of us have. They deserve the right to make choices about where they live, whom they live with, and where they work."
Senate leader Phil Berger said he thinks more funding could get included in this year's state budget bill.
"Our real challenge is the amount of money that it will take to make sure everyone that's on the waiting list is receiving the funds," he said.
Clearing the entire waiting list would cost more than $600 million, so lawmakers in recent years have taken smaller steps to add hundreds of more slots in the program.
Another challenge for people with intellectual and developmental disabilities is the low pay rate for their caregivers. Crawford said the state needs to take action to increase pay so caregivers don't leave for other jobs.
"Many of those people across the state are making $12 and $14, maybe if they're lucky, $15 an hour," she said. "That is not a living wage here in North Carolina."
Legislators say they're introducing multiple bills to address the issues raised during the lobbying day. A Senate bill filed this week would raise wages for direct support professionals services serving Innovations Waiver recipients to $25 per hour.
