Jessica Aguilar has twin 10-year-old boys with autism. The family lives in Union County, just southeast of Charlotte. The boys require support workers to help them live with more ease — people who will take them to activities in the community or who will help them practice new skills, like saying hi to strangers.
But finding reliable people to do this work hasn’t been easy.
“I have one (worker) that left my kids alone,” she said.
Aguilar described how she went to take a shower once the support staff arrived, but then one of her boys got angry and started throwing things. In the middle of his episode, Aguilar said, the worker just left, without saying a word to her.
“She got scared, and she went away,” said Aguilar, whose path to getting proper services for her children has led her to get involved in disability advocacy organizations.
The challenges faced by direct-support professionals and the people with disabilities who rely on them for care have been building for decades.
“Without intervention, the current system of supports and services is at risk,” wrote three researchers at the University of Minnesota in a chapter of a 2002 book on the future of services for people with disabilities.
“In the next 25 years, the focus of research and practice must shift from simply reiterating earlier findings to describing, testing, and implementing interventions to overcome workforce challenges,” they said. “Improving pay, paid leave time policies, benefits, and opportunities for advancement must become priorities among policymakers if community support services are to continue.”
More than 20 years later, you’d be hard-pressed to find a policymaker at the state or federal level who would argue that the shortage of these support workers is not a problem. What’s harder to locate, though, is the political will to solve the shortages, which are building to unsustainable levels.
In North Carolina, about 20% of services the state authorizes for people currently on the waiver don’t get delivered, according to an analysis by NC Health News. That’s largely because of a worker shortage, advocates say.
In 2017, the President’s Committee for People With Intellectual Disabilities produced a 60-page report for then-President Donald Trump about the workforce crisis.
For 30 years, they wrote, persistent low pay, limited benefits and few opportunities for career advancement created a situation where the number of support providers is not keeping up with the number of people with disabilities who need their services.
“There is no issue more pressing in regard to sustainability of service provision for people with (intellectual disabilities) than responding to the serious crisis it now faces,” the authors wrote. The shortage puts “people with (intellectual disabilities) who need assistance at great risk of harm, contributes to unreasonably long waiting lists for services and (leads) many people to reconsider more expensive institutional models of segregated care outside their home.
“Not only does the (direct support professional) crisis impact individuals and families, but it is also extremely costly to the human services system and the overall U.S. economy.”
The publication ends with a list of detailed policy solutions that could be enacted to address the crisis.
“It’s a great report,” said Joe Macbeth, CEO and president of the National Alliance for Direct Support Professionals, who co-wrote it.
“There’s 10 solid recommendations in that report. None of them have been implemented.”
Suggested federal policy fixes can feel very pie-in-the-sky — especially with a gridlocked Congress — leading advocates to set their eyes on state reforms. Some are hopeful that salary bumps or rate increases might find a place in future North Carolina state budgets.
During a 2021 meeting of a legislative health committee, representatives discussed a bill that would provide extra money for these workers. Rep. Tim Moffit, R-Hendersonville, a co-sponsor of the bill, shared that he has a brother who is autistic, lives in a group home and requires the support of these workers. But during home visits, Moffit is his caregiver.
“I am a direct-care provider 60 days and 60 nights a year,” he said. “And it is a tough job. It is a very tough job.”
Moffit said he was first alerted to the shortage of these workers because of vacancies in his brother’s group home. Until then, he said, he’d never known how little they were paid.
“There are much easier jobs out there that pay a lot more money than these jobs,” he said. “When you start digging into that, and you find out what the wages that are paid to these direct-care workers is — I’m embarrassed; honestly, I’m embarrassed. We can do better than this.”
Residents are certainly demanding it.
In the last week of January, N.C. Department of Health and Human Services Secretary Kody Kinsley; Sen. Jim Burgin, R-Angier; and Rep. Hugh Blackwell, R-Valdese, sat at the front of a room in Burke County for a town hall meeting on mental health.
One resident approached the microphone. She said she just found out that the support worker who aids her son at his group home makes between $9 and $12 an hour.
“I want to know what in the world are we going to do?” she said. “We’ve got to do something. We have got to. Because paying them this kind of wage to do this kind of job is unfair.”
“We need desperately to be able to increase the rates,” he said. “We need to actually give people a pathway where they can get more education because right now the only way that they can earn more money is by leaving the field.”
He said there also needs to be more slots on the Innovations Waiver, the Medicaid program that provides services to people with disabilities who want to live in the community and not in an institution like a group home or nursing home. Right now, there are about 14,000 people on the waiver but more than 16,000 on the waiting list, which can carry a 10-year delay in services.
Only 79% of funding allocated for providing direct support was actually used by the people who were granted it, according to data NC Health News obtained from the state health department. That’s largely because there aren’t enough workers to provide the care.
Also, some believe that number is likely a significant undercount of the care people need but aren’t receiving, since it includes hours that are delivered in group homes and other small facilities that are legally required to be fully staffed 24/7.
Part of the reason there’s a staff shortage is because direct-service providers get paid about $11.50 an hour on average, according to a pay study by policy workers and advocates in the state. The wage has only risen about two dollars since 1998, when a study by researchers at UNC Charlotte found the average pay to be about $9.13 an hour.
Movement on clearing the waitlist and increasing rates has to come from both the state legislature, which controls the money, and the Department of Health and Human Services.
During the Burke town hall, Burgin, who has been traveling the state with Kinsley since last year holding at least half a dozen of these meetings, acknowledged that while the worker shortage and the waitlist are critical and need to be addressed, doing that is expensive.
One spot on the Innovations Waiver needs to be funded at the rate of about $138,000 per year, he said. And that’s given the current reimbursement rates for care, which most agree would need to be significantly raised to motivate more people to join the field and address the workforce shortage.
“You can do the math. It’s about $3 billion of total funds” to clear the waitlist, Burgin said, of which the state would pay $1 billion. With the way Medicaid funding works, the federal government covers the rest.
While waiver recipients, on average, only need about $65,000 in funding to get their needs met, federal rules still require that the higher sum be set aside to cover potential costs.
North Carolina currently has a more than $6 billion budget surplus, but last year, the legislature put in only enough funding to clear about 1,000 people from the waitlist at a total cost of $29.8 million. In addition, lawmakers added $300,000 to increase the pay for more direct-service providers.
Clearing the waitlist would require multiplying those numbers at least 15 times.
There’s also talk of asking for a change to North Carolina’s state Medicaid plan to allow for a different waiver program to serve people with fewer needs, but make it an entitlement, thus guaranteeing services, said Julia Adams-Scheurich, a longtime lobbyist and expert on disability issues.
“It becomes a state plan amendment; it’s not a waitlist,” she said.
But that idea — and any others — would also need legislative approval and appropriation of the funding required to make it happen.
“I mean, we’re talking about big numbers over time, so we’ve got to try to work through that. And that’s what the hard part is,” Burgin said, “because there’s a lot of other needs.”
While that’s true, it’s a hard pill for many people with disabilities to swallow since many feel as though they’re always pushed to the end of the line.
“We’re disposable. That’s what it is,” said Matt Potter, a disability rights activist who has cerebral palsy. “And nobody wants to say it, but that is why. We’re disposable. We’re acceptable losses. Nobody cares if we’re shuttled off somewhere. People can just go about their lives and say, ‘Oh, those people are taken care of,’ and then they’re fine. We’re not, but we’re not the ones who are in power right now. We’re not the ones that have the authority to make decisions about any of this.”
Clarissa Donnelly-DeRoven covers rural health and Medicaid. She previously worked at the Asheville Citizen Times where she reported on the police, courts, and other aspects of the criminal justice system.
North Carolina Health News is an independent, nonpartisan, not-for-profit, statewide news organization dedicated to covering all things health care in North Carolina. Visit NCHN at northcarolinahealthnews.org.