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by Lynn Bonner, NC Newsline
March 27, 2025

People with disabilities and their parents came to the Legislative Building in Raleigh on Wednesday to illustrate for legislators the frustrating problem of finding help that enables people with intellectual or developmental disabilities to live in communities.

Their testimony highlighted the challenges of finding frontline workers amid constant turnover and the years-long wait to receive help from a Medicaid program called the “Innovations Waiver.” But speakers also described lives of people who are able to work, make friends, and pursue hobbies with the help of workers called direct support professionals.

“Innovations has been an incredible success story for Nicholas,” Ray Hemachandra of Buncombe County said of his 24-year-old son, who is autistic and intellectually disabled. Nicholas works at an ice cream shop and volunteers at a food bank and a community church ministry, his father said.

“Nicholas learns skills for greater independence with his support workers, from running laundry and doing dishes to self-care skills,” Hemachandra said. “He participates in Asheville City recreational programs and other social groups, swims and takes classes at the Y, and he has become a truly exceptional juggler. His Innovations support workers contributed to all of this.”

He highlighted the importance of his son receiving support workers while he was still in school.

Unfortunately, for thousands of other North Carolinians in need of similar supports, the wait for help will likely take years. There are now more people on the waiting list (18,771) than there are people who are using the program. Most children on the list now will be well into adulthood before they receive services under the waiver. In 2021, Ruby Loftis of Winston-Salem, died while waiting for a slot.

The frontline workers, called direct support professionals, are employed by private companies and their average pay is below the state’s living wage. Low pay and lack of opportunity for career advancement contribute to worker shortages and job turnover.

A bipartisan group of legislators that Rep. Zack Hawkins (D-Durham) helps lead is in its second year working to highlight the needs of people with disabilities and their families and to convince budget writers to contribute more money to support them.

“Families are crying for the help from the General Assembly,” Hawkins said. Helping these families will help “build a more inclusive state,” he said.

Rebecca Conway quit her job in 2022 to care for her daughter Erica, because no direct support professional was available to do the work, she said.

Erica, now 34, suffered a traumatic brain injury when she was 16, Conway said.

“Changes must happen to attract a healthy workforce to care for our fellow North Carolinians that need assistance,” she said. “Better wages, a statewide database for certification that can be accessed by all provider companies, clear career paths, and educational development programs would send a message that [direct support professionals] are valuable and caregiving is recognized as a profession,” she said.

Last year, the state Department of Health and Human Services published a multi-year plan to address the workforce shortage.

Legislators have been adding Innovations Waiver slots, and in the last few budgets increased rates paid to the companies that employ the frontline workers with the intention that they increase worker salaries.

Yet, the waiting list keeps growing, and most workers’ salaries have not reached the legislature’s target of $18 an hour.

The workers who are helping people with disabilities live full lives “are making $12 and $14, maybe if they’re lucky, $15 an hour,” said Rep. Sarah Crawford (D-Wake). “That is not a living wage here in North Carolina. Many of these people are leaving work to go to work, either to another job so they can make ends meet, or to take care of other family members.”

Sens. Lisa Grafstein (D-Wake) and Timothy Moffitt (R-Henderson), co-sponsored bills that seek to raise direct support worker pay to $25 an hour, and to add another 10,000 Innovations Waiver slots over the next two years.

Hawkins said he wants a 10-year plan and to work alongside the state Department of Health and Human Services to figure out how to move through the waitlist.

No legislative action is expected on the issue until Republican leaders unveil a state budget plan later this spring.

NC Newsline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. NC Newsline maintains editorial independence. Contact Editor Rob Schofield for questions: info@ncnewsline.com.