“Nobody cares if we’re shuttled off somewhere”

“Nobody cares if we're shuttled off somewhere”

By Clarissa Donnelly-DeRoven 

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 from 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 isn’t a problem. What’s harder to locate, though, is the political will to solve the shortages, which are building to unsustainable levels. 

Right now, in North Carolina, about 20 percent 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. 

A national and local problem

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, contribute[s] 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, the CEO and president of the National Alliance for Direct Support Professionals who co-authored it. 

“There’s 10 solid recommendations in that report. None of them have been implemented.”

“Honestly, I’m embarrassed”

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. 

Some recommendations from the federal report: 

  • Make it easier for family members to be hired as direct support providers.
  • Have the federal Department of Labor explore ways to create a distinct job title of “Direct Support Professional” and provide routine data collection and analysis on that workforce. 
  • Provide federal grants and funding to states to recruit and train direct support providers and enhance employee retention.
  • Have federal agencies such as the Centers for Medicare and Medicaid Services include sustainable salaries in their rate-setting to reimburse for services.
  • Invest in community colleges and job training centers that would train potential direct support workers.

“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.

During the last week of January, NCDHHS 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.”

Kinsley agreed. 

Acting health and human services Sec. Kody Kinsley before the senate Health Care Committee for a confirmation hearing close to six months after he took the job as head of the 18,000 strong Department of Health and Human Services. Photo credit: Rose Hoban

“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 need 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 around 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 percent 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 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.

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