COLUMBUS, Ohio — The commercial lasts less than a minute. Time enough, Ben Young hopes, for viewers to see what he needs and to imagine what he can give.

“Come change my life,” Young says in a computer-generated voice. “I promise it will change yours forever. Help me help myself.”

The pitch, from a bright and determined young man who can neither feed nor dress himself, or even speak clearly without aid of technology, is part of a statewide campaign to recruit the workers known as “direct support professionals.” The well-being of Young and tens of thousands of other Ohioans with developmental disabilities turns on the availability of competent and reliable support providers.

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But the pool has gone frighteningly shallow.

Companies and nonprofit agencies that offer care and support to people with disabilities say they are struggling more than ever to attract workers, forcing some to terminate services and decline new clients. Parents go without sleep and take leave from their jobs to fill in. Adults and children with disabilities become frustrated, confused or upset at the churn of names and faces and routines.

“We have a workforce crisis on our hands that is of mammoth proportions,” said Mark Davis, president of the Ohio Provider Resource Association.

Davis, whose organization represents agencies that employ direct-support workers, said surveys show employee turnover at 50 percent. Ten to 20 percent of jobs are vacant. About two-thirds of workers qualify for federal health-care assistance, and a majority put in overtime so people such as Young, who is severely affected by cerebral palsy, don’t go without critical services.

“We believe that 76 percent of people are working six days a week,” Davis said.

Awareness is part of the problem. Many would-be workers simply don’t know about the demand or have a notion of how rewarding the field can be, Davis said.

The bigger issue is pay. The average hourly wage for a direct-support provider in Ohio during 2016 was about $11.16 an hour — less than $24,000 a year.

“We can’t pay a lot of money,” said Mark Schlater of Toward Independence, a nonprofit agency in southwestern Ohio that serves people with disabilities. “The regulations are huge; the responsibility is enormous. Why is it a train wreck? It’s out of balance.”

Amy Hewitt, director of the Research and Training Center on Community Living at the University of Minnesota, said she understands why advocates and agencies are sounding an alarm. Yet nothing about the situation — in Ohio and throughout the United States — seems surprising.

“You will hear providers talk about the workforce crisis, and they use that word,” she said. “It’s far worse than a crisis. Look it up in the dictionary — crises don’t last 30 years. This is a systemic failure that we’ve been dealing with for more than 30 years.”

As more people with disabilities leave government-run institutions and work programs, the need for workers to assist them at home and in their communities has dramatically increased. The compensation of those who work for private companies and nonprofits, however, generally hasn’t matched that of public employees.

Starting pay for a direct-support worker in Ohio at a state-run developmental center, for example, is nearly $16 per hour.

“The way in which we’re able to afford community services and to argue that they’re less expensive,” Hewitt said, “is to pay staff less and get rid of their benefits.”

Steep trade-offs

Tammie Hudson loves her work. As long as there isn’t a section marked “compensation,” she can check just about every box on a job-satisfaction survey.

“It’s gratifying for me to know that I woke up and made someone else’s day better,” Hudson said. “They can utilize my services, and I can utilize their friendship.”

She is a house supervisor and direct-support worker for Toward Independence, working mainly in the Dayton-area house where Young lives. The 34-year-old and one of his roommates, Ian Roe, 47, need around-the-clock support.

Cerebral palsy keeps Roe from speaking clearly, so he used a computer to convey his concerns. “Due to being understaffed, I was not able to go to some of my activities,” he said. “I think the amount of money staff are paid is why they don’t stay or apply.”

Young had bad experiences with previous workers, some of whom, he said, committed fraud. His physical vulnerability made it difficult to know when and whether to speak out. “Was hell,” he said.

Hudson arrived as an answer to prayers.

She is patient and kind but she doesn’t coddle. Young is a grown man and coddling gets on his nerves. “We have many moments,” she said. “They don’t have to be verbal.”

For Hudson, too, the arrangement is an improvement. “There were family members who thought it was my job to bathe the dog,” she said of a previous job. “I had to say I didn’t think the dog had care hours from Medicaid.”

Part of the reason she sticks with the field is a vow she made to her mother, who raised 12 children and also helped to care for other aged and ill family members. Her mother has Alzheimer’s now and can’t safely live at home.

“I made a promise,” Hudson said, “that because I couldn’t care for her the way she needed, I would make sure that all of my consumers would get the best care.”

The trade-offs for that dedication are steep.

Hudson works seven days a week. She has never gone on a vacation. At 42, she still can only dream of owning a home. The needs of her clients sometimes collide with those of her two teenage daughters.

“I feel kinda bad because my daughters will ask, ‘Do you know when you’re coming home?’ Sometimes, I’m running to Walmart at 2 or 3 o’clock in the morning to get their things for school,” said Hudson, who lives in Dayton. “You take your lumps. But at the end of the day, I’m proud of myself.”

She realizes how mind-boggling it sounds when she talks about the length of some of her workweeks. “Once,” Hudson said, “I did a 25-hour shift.”

Young’s mother, Jan Young, is on the board of directors of Toward Independence, the agency that employs Hudson. She also sees herself as an advocate for the industry’s workers, who are disproportionately female and minority.

“I’m pushing hard not just for bonus cards and employee-recognition dinners,” she said. “I’m pushing for wage increases. That’s what’s going to get people in the doors.”

Slim margins

Wages for home- and community-based services such as those Ben Young and Ian Roe receive are tied to publicly funded Medicaid reimbursement rates set by the state and paid with a mix of local and federal money.

There are dozens of Medicaid rates that disability-services companies and nonprofits can be paid, depending on the service, number of consumers and location. A typical reimbursement for an hour of one-on-one personal care and homemaker services in Ohio is around $20, and from that agencies pay wages, taxes and other overhead.

“There’s very little margin at the end of the day,” said Schlater, whose agency staffs dozens of homes, including the ranch house near Dayton that Young and Roe share with another roommate. “The funding is inadequate to draw the competency and the quality of staff that we need.”

County disability boards help pay for community-based Medicaid services, but they cannot directly subsidize private agencies and their workers.

Hewitt, the Minnesota researcher who studies the disability workforce, said a 30 percent bump is probably required to approach a living wage. Legislators and public officials look at such needs and wince.

“In this country, we tend to reward people based on some type of skilled training,” Hewitt said. “That threshold is low on the training side, and the salaries reflect that. And yet we have this huge expectation from this workforce. We hold them accountable, but we don’t prepare and compensate them.”

Those workers also have been largely left out of legal battles around the country that seek to push states to increase community-based services. Ohio is embroiled in such a lawsuit, brought two years ago by Disability Rights Ohio and other advocates who say the state still hasn’t done enough to get people out of institutions and off years-long waiting lists for one of the Medicaid waivers that pays for community services.

Workforce problems should be addressed in those fights, Hewitt said, because high turnover rates lead to poorer outcomes for people with disabilities.

John Martin, director of the Ohio Department of Developmental Disabilities, said Ohio is making progress. Medicaid reimbursement rates for community-based care went up by about 6 percent two years ago, the first significant increase in more than a decade. The current budget also allows for higher rates for workers who get additional training and have at least two years of experience, as well as “add-ons” of about $2.50 an hour for more-complex medical and behavioral care.

He said families should ask agencies whether they passed along raises to workers.

“Our work is very rewarding,” said Martin, who has an adult son with disabilities and who once worked as a direct-support employee. “But we also know we have to get the wages up.”

Few good options

Given an alternative, Jacob Sprowl’s parents wouldn’t choose for him to live more than an hour away at the state-run Columbus Developmental Center west of Downtown. The 19-year-old is eligible for services to help him live and work in his community, near family and friends.

But the institution seems the better option right now, his parents say, as they haven’t been able to find direct-support workers who can meet Jacob’s needs.

“Every parent wants the best for their child, and they’re striving for that,” said Schlater, whose Toward Independence agency is based in Xenia, near the Sprowls’ home in Greene County, but struggles to hire workers.

Jacob has had a hard time of it, said his mom, Sharon Sprowl. “Last night, he was in tears. He also was in tears right before Christmas. He said, ‘I’m not supposed to be here for Christmas.'”

For most of Jacob’s life, his family — mother, father and younger brother — did their best to manage his severe autism and difficult, sometimes explosive, behavior. “Our home was essentially a unit,” Sprowl said. “I was doing 90 hours a week. A labor of love, yes. But.”

Jacob has been hospitalized, treated in programs out of state, and for a time had two direct-support workers who came to the house. They cared deeply for Jacob but left, as so many do.

One went back to work as a contractor after the economy improved and the other gave up “because of the pay issue,” Sprowl said.

In a letter to Ohio legislators last year, an administrator at the Greene County Board of Developmental Disabilities said individuals and families who post requests for direct-support services sometimes get no response. Of 90 such requests posted in 2016, 19 had zero responses — and therefore no agencies or workers to choose from. Twenty-seven received just one response.

“I should mention that receiving a response to the service request is just the first step,” Greene County administrator Denise Summerville wrote, as scheduling, compatibility and quality have to be evaluated.

The Sprowls would like to move Jacob to a house near them that is being renovated for people with disabilities. “We could have it ready in a couple hours,” his mom said. “The other thing is the reality: Are there providers?”

Earlier this year, the President’s Committee for People with Intellectual Disabilities, an advisory group started in 1961 by President John F. Kennedy, released a report on the wide-ranging effects of turmoil in the direct-support workforce.

“There is no issue more pressing” for people with disabilities, it said, than that surrounding providers. “Correcting the problems will require bold leadership and immediate action.”

For now, Sprowl is careful not to tell her son he is coming home. Instead, she says, “We’re going to make a home for you, Jacob.”

She drives from southwestern Ohio to Columbus five days a week to visit. On a recent trip she took special note of a billboard along the highway. It didn’t have the heart and charm of Ben Young’s please-work-for-me advertisement, but the allure was clear.

“Warehouse jobs for $15 an hour,” Sprowl said. “That’s more than caregivers get.”

© 2018 The Columbus Dispatch
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