By Clarissa Donnelly-DeRoven 

Matt Potter is 36 years old and a disability rights activist. He has cerebral palsy and uses an electric wheelchair. Right now, his parents are his primary caretakers. They help him get to and from the bathroom, move in and out of bed, change his clothes and so on — things he describes as “intense, but rather simple personal care needs.”

But they’re getting older.

“None of them have any world-shattering health issues right now,” Potter said. “There’s no terminal cancer or anything like that. But, you know, Father Time is undefeated.”

There are thousands of others like Potter in North Carolina: people who have disabilities and want to live at home — not an institution — but require assistance with their day to day tasks to make that possible. Rather than relying on family members for all their care, they’re supposed to have access to an alternative: a direct support provider. 

But there’s a huge shortage of these workers. It’s a systemic issue fueled by low pay, few opportunities for career advancement and poor working conditions. 

It’s also an issue with huge implications for people with disabilities, especially someone like Potter who has a bachelor’s degree and has served on multiple boards and committees to support people with disabilities.

If Potter’s parents suddenly fell ill and couldn’t meet his needs, and there weren’t support workers available to help him with his daily living tasks, he would likely end up in an institution, which he said, “is about the least appropriate place possible for me.” 

One in five assigned hours goes unused

It’s hard to quantify the shortage of these workers because of poor data collection at the federal and state level. 

One way to get a scope of the issue locally is to compare the hours of service people have been approved to receive through North Carolina’s Medicaid Innovations Waiver — for people who have disabilities that require a significant level of care — to the number of hours the state actually pays for. 

Of all the services authorized between 2019 and 2021, just about 79 percent of the available dollars were paid out, according to data that was obtained by North Carolina Health News through a public records request.

That doesn’t mean 79 percent of people got services, or that everyone got 79 percent of the services they needed. Some people likely received all of their hours while others got nothing, but the data lacks these details.

What is certain is that the services the state never paid for equates to thousands, maybe millions, of hours of care. Over that two year period, a total 39,478,612 “units” of service that the state authorized went unused, in a mix of 15-minute increments, hours and full days.

Those in the field say a major reason for the disparity between hours allotted and hours used is that there are not enough workers to deliver that care, something experts have been flagging for at least 20 years. 

But even that’s an undercount

While the numbers point to the shortage, it doesn’t get close to the real level of care that people with disabilities in the state are missing out on. 

In North Carolina, there are 16,439 people on the “Registry of Unmet Needs,” the waiting list for a spot on the Innovations Waiver. There are currently 14,138 slots on the waiver — all filled — and an average wait of between five and 10 years. However, spots open up county by county, and some counties have projected wait times of more than a decade. 

For someone with a disability that requires a significant level of care, getting on the waiver is crucial, since private insurance and regular Medicaid generally don’t cover all the needed services. People on the waitlist can get some services, but generally not as many. Also, the state reimburses that care at lower rates than waiver services, making it unattractive for providers.

All this translates into one reality: There are not enough workers available to provide services to those who need them. 

“But I would caution against treating it as some sort of natural phenomenon,” said Corye Dunn, the policy director at Disability Rights North Carolina. “The imbalance is created by a growing population and an artificially depressed rate/wage.”

Different jobs for different people

Because there’s such a wide range of needs that people with disabilities have, what it looks like to be a direct service provider varies. 

Nicholas Hemachandra, for example, is 22 years old, autistic and intellectually disabled. He’s on the Innovations Waiver and lives with his dad, Ray, in Asheville. For more than a decade, Nicholas primarily had one worker who spent a few hours with him after school. They’d do fun things — go for walks, swim at the YMCA, visit the Barnes & Noble, juggle — and she’d also help Nicholas with independent living skills, like laundry or vacuuming. 

This summer though, Nicholas’s direct service provider stopped working with him after she found a full-time job with benefits. That left Ray scrambling to figure out how to cover his son’s care while working enough to pay their bills. He does some consulting work from home, and he sits on lots of boards and committees — some that pay, many that don’t. 

two people stand in front of windows in a white room
When Nicholas has access to a support worker, he’s able to go on different trips around town and engage with the community. Credit: Ray Hemachandra

“I’m kind of cobbling things together this year,” he said. “A couple of times possibilities of jobs came up — and I’m not saying this is why — but there was a conversation recently of like, well, could I take that job now? And if I take that job, what does that look like for Nicholas?”

For someone with a physical disability, the job looks different. David Owen is a service provider for a man who has cerebral palsy. He needs help with all the personal care tasks Matt Potter described, plus more. On an average day Owen helps him get dressed and out the door, drives him to work, types for him, reads him his emails, cuts his food up small enough so he doesn’t choke on it, walks his dog, cleans his room. Sometimes they do yoga. It can be difficult for new people to understand his client, so Owen translates what he says. 

“Basically everything that someone needs to do to live, I do it for him,” Owen said. 

Cheryl Powell is also a direct service provider, in addition to having cerebral palsy. Primarily, she helps with in-home tasks, like money management and reading. Powell uses a wheelchair and doesn’t drive, so if her clients want to go somewhere they have to find an accessible bus. 

Stagnant pay, little room for growth

For all this, direct service providers get paid about $11.50 an hour on average, according to a pay study conducted 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.

“That is abysmal,” said Pat Porter, who is currently working on the pay study and serves as a policy adviser for the state legislature. She also headed up the developmental disabilities division within the state’s health department for nearly 15 years. “It is certainly not a living wage.”

Surveys of the service provider workforce have found that the job is primarily done by young women of color, especially immigrants, without college degrees. Advocates argue that’s a reason wages have remained so low for so long. 

Nicholas Hemachandra works a few shifts per week at an ice cream shop in Asheville. Part of his allocation of service hours through the Innovations Waiver includes a worker to support him while he’s at this job. Credit: Ray Hemachandra

“I mean you look at other occupations that are dominated by women and minorities, and they’re all low-wage jobs, right?” said Joe Macbeth, the CEO and president of the National Alliance for Direct Support Professionals. “Nurses of 100 years ago were in the exact same position that we find ourselves in today. Nurses were not seen as professionals 100 years ago. They were bedside caregivers. They were handmaidens to physicians.”

Macbeth and others have long advocated for a more standardized credentialing system for direct service providers, alongside pay raises. Much of the training the providers now receive happens at the agency where they work, and if they go to a different agency — regardless of their years of experience — they often have to go through the same training program again, and start at the same low wage.

A million entities to blame

There are about half a dozen agencies — federal on down to local — involved in determining how much money trickles into the workers’ wallets.

“When states determine their budgets, they have to rely on an Occupational Classification that’s recognized by the [federal] Bureau of Labor Statistics,” Macbeth said. To determine what they should pay the workers, “they use a percentage of a home health aide, a percentage of care attendant, a percentage of the Certified Nursing aide, and they say, ‘Based on these occupations and these median salary ranges, this is what a [direct service provider] should earn.’ Well, it’s apples and oranges.”

The N.C. General Assembly allocates money for the state’s Medicaid Innovations Waiver. The state Department of Health and Human Services manages that waiver program, deciding what services to cover, who can provide each service and how much to reimburse for each. Local mental health management agencies develop their own networks and contract with local private agencies to hire the workers. Those management organizations can adjust the rates paid to each agency, so long as they don’t fall below a certain threshold set by the state. 

The private agencies ultimately make decisions about how much of that rate gets spent on their own administrative and overhead costs, and how much goes to wages (and maybe benefits) for the workers themselves. 

“Cost of living has changed,” Porter said. “We’ve increased the salaries of everybody from McDonald’s to actually those people who work in the state [developmental disability] centers.”

Institutional versus community care

In 2021, the state legislature approved a pay raise for support workers in intermediate care facilities, institutions for people with disabilities. While the legislature also approved wage increases for some direct service providers who work in community settings, the regulations and implementation were not as straightforward as those for workers in institutions. So, not every community-based worker saw a pay increase.

Inequity in funding for home-based versus institutional care is a contentious, long-standing issue. In a 1999 Supreme Court ruling, Olmstead v. LC, the justices found states’ overreliance on placing people in institutions to be a violation of the Americans with Disabilities Act. The ruling required states to provide services for people with disabilities in their communities, rather than in facilities. 

In 2011, after a federal investigation, the U.S. Department of Justice declared North Carolina was in violation of the law and the Olmstead ruling. The state ultimately settled with the federal government, but it has continuously dragged its feet on implementing the solutions it agreed to.

Many argue that increasing pay rates for all service providers in state institutions but not all those who work with people in the community is an example of the state’s “institutional bias.”

“One of the reasons that we are over-reliant on [intermediate care facilities] is because their payment rate reflects what it actually costs” to care for people with disabilities, Dunn said. “It reflects the actual breadth of what people need, including room and board.” 

Community-based services and institutions are also deeply intertwined. In North Carolina, many agencies that employ these service providers to work in the community also own intermediate care facilities. RHA Health Services, for example, owns about 100 intermediate care facilities, according to state data. That same agency is also a large employer of direct service providers in institutions and in community settings. 

The regulations surrounding pay pose complications for these agencies, because they end up paying workers different wages for the same job depending on their work setting. Sometimes, it even means they pay the same worker different wages for different shifts. 

In Harnett County, for example, if you’re a service provider who works for RHA in the town of Coats, helping people on the Innovations Waiver, your salary will start at $12. But if you work at the intermediate care facility that RHA owns just a few miles away in Lillington, your salary will start at $15 an hour. 

“That’s not unusual,” Dunn said. “That also — by the by — makes it difficult for [agencies] to criticize institutional bias in the system, even when they are potentially very good providers of home and community based services.” 

Correction: A previous version of this story stated that Matt Potter has a master’s degree. Potter has additional post secondary education but no further degrees.

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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....