More than a few times, Kenna Robinett says, she was asked to stop meddling and micromanaging. The agencies that had been hired to provide support and care for her twin nephews, both of whom have severe autism and cannot communicate verbally, said they could handle the situation if she would give them a chance.
"So I started tracking only the things that weren’t related to me or my opinions," Robinett said.
The spreadsheet filled up quickly anyway.
Some of the entries seem ridiculous: Employees microwaving bread sticks on high for 10 minutes, until they looked like charcoal. Ice cream stored in a kitchen cabinet, Hot Pockets served frozen.
Other notations were cause for alarm: A call from school after one of the 19-year-olds showed up with feces on his hands. Complaints from neighbors who heard screams. A message from a caseworker telling Robinett, who was in a Florida airport at the time, that there would be no one to care for the teens as of 3 p.m. that day because the provider agency was in trouble and shutting down.
"The quality of support that we’ve gotten from the agencies is not sufficient for me to be out of the picture," Robinett said.
Demand for a workforce to help people with intellectual and developmental disabilities live as they and their families choose is soaring. But low wages, high levels of responsibility and a lack of awareness about "direct-support professional" jobs has led to a staffing crisis that threatens the promise of community living for thousands of Ohioans and others throughout the nation.
Advocates say employee turnover often exceeds 45 percent. "That comes at a cost, at the continuity of care," said Gabrielle Sedor of the American Network of Community Options and Resources.
To be sure, the direct-support field has numerous competent and compassionate workers, along with well-run agencies. Scattered others seem poorly conceived. No matter their stature, many struggle to secure good employees willing to help care for society’s most vulnerable people in exchange for retail and fast-food pay rates.
"You make a mistake at McDonald's and someone gets pickles on their burger," said Matt Hobbs of Boundless, a Columbus-based disability services agency. "Make a mistake working in our field and there are severe consequences. There are investigations; the police could be called."
Robinett, who lives in Reynoldsburg, is among several family members who spoke to The Dispatch about the difficulty finding dependable support. She’s now working with her sixth agency in just a year and a half. Things have gone well for the past several weeks, but Robinett remains wary.
She recalled her discomfort with a worker sent by one Columbus-area agency. "It was about a week, and I just didn’t like her personality," Robinett said. "If I feel that way, I Google. Her picture popped up and I just about choked. There I am at work, and it’s a mug shot."
The woman, Lady Whitney, had recently served a federal prison sentence for Medicaid fraud in a home-health case. She remains on the federal exclusion list and isn’t supposed to be working in the industry.
Cap City Supported Living and Home Care Services manager Brenda Talley said an initial background check did not turn up Whitney’s suspension. When administrators found out, "We terminated her immediately," Talley said.
Adriana Lyons is a cheerful and social 15-year-old with a wicked sense of humor. She loves music and Minecraft, YouTube and naming things — her communication board is Ellie, and she calls her electronic tablet James.
A premature birth and hemorrhage caused the cerebral palsy that keeps Adriana from speaking clearly, eating on her own or walking. She also has chronic lung disease and epilepsy. "She’s total care. She needs maximum assistance for everything," her mom, Patty Lyons, said. "But she’s age-appropriate and cognizant of everything around her."
When Adriana hears her mom talking about all the problems they’ve had finding someone to stay with her at night while Lyons works as a hospital respiratory therapist, her smile fades. She starts to sob — first quietly and then uncontrollably.
"It’s highly emotional when you have high turnover and different people," Lyons says. "This is deeply personal, intimate care. She has a G-tube (which delivers food into the stomach), takes 13 different medications. Essentially, she’s nonverbal. She has to be left alone with a provider while I’m at work."
For years, Adriana was under the care of a private-duty nurse when Lyons was away from their Westerville home. Now, she and many others no longer qualify under state Medicaid policies that say those services can be delegated to less-costly personal-care aides.
Lyons was first denied private-duty nursing for Adriana two years ago. She fought and appealed the decision, but eventually had to turn her energy toward the search for qualified personal-care providers to handle the transition. It took months — so long that at one point the state threatened to take away the Medicaid waiver that pays for personal-care services if Lyons didn't use it soon.
"The choices for me, if we cannot keep a waiver provider, are to quit my job, or to surrender my daughter to the state and put her in a residential facility," she said.
Lyons finally found someone this month and keeps her fingers crossed. She has spent hours training others on how to care for her daughter only to have them decide not to take the job or quit.
"The hardest part is that there is no end in sight," Lyons said. "You can't just push through. This is the rest of her life."
Tom Burns of Ravenna in northeast Ohio said many families face similar struggles. "I've been working to try to get others like me into a family group statewide," he said.
Burns sent out 250 requests for care for his 35-year-old daughter, Amber, and received just 30 responses. "And none of them were capable of handling Amber’s case, for a variety of reasons," said Burns, who is fighting to keep her private-duty nursing.
Amber’s disabilities are severe and she suffers daily, sometimes-dangerous seizures. "They said I could keep the nursing until I found a provider. Well, I can't find a provider," he said. "Now I'm going through the courts."
Satisfaction, not high wages
Jewel Herbig has no doubts or regrets about trading her previous job as a registered veterinary technician for a new career starting up Franklin County operations for Self-Reliance Inc., an established disabilities services agency based in the Springfield area.
"I knew I wanted to do something to help people," said Herbig, whose boyfriend’s parents own the agency. "Before I started this, I had no idea that there were these jobs. And I do love it; I don’t think I’ve been happier in a job in my life."
She just recently found someone who appears able to provide services for Patty Lyons’ daughter, Adriana. Herbig could hardly believe the challenge.
"Probably 30 to 40 applicants, and she is the only one I feel is qualified," she said. "In my search to hire people, I’ve found it really difficult to find quality people I can trust."
The new chairwoman of the Ohio Developmental Disabilities Council, appointed this month by Gov. John Kasich, said bringing attention to the direct-support workforce crisis is a top priority. "I see it from all sides," said Joanna Spargo, who heads the advocacy council, has a son on the autism spectrum and is the chief executive of REM Ohio, a large disabilities services agency.
"I work with our managers not to accept just everybody who comes in," she said. "But it gets difficult when you have shifts that need to be covered. I worry about quality, as a parent and as a provider."
Legislators need to better understand that people with disabilities generally have no choice but to rely on publicly funded services. "You hear, ‘We’ve got to cut Medicaid spending.’ Well, there isn’t anything else that can fund these services," Spargo said.
Herbig often works for clients herself, covering the hours until she can find an employee whose schedule and skills are a fit. She offers signing bonuses but knows the hourly pay — about $10 — isn’t much of a draw. Herbig recruits online and keeps her eyes open for people who seem to have the right heart and temperament.
And yes, she said, she made more money as veterinary technician.
Kenna Robinett’s nephews, Kristopher and Keith Conley, don’t react well to sudden change and upheaval. And they have had so much of it, she said, that it’s hard to know the extent to which they will be able to thrive in their supervised home.
Robinett became the twins' guardian after they turned 18. She doesn't want them to live in a state residential center, and has been trying to find and keep support staff in the Reynoldsburg apartment the brothers share for more than a year.
"We can’t work on the guys and see what they can do, because it’s been so inconsistent," said Robinett, who also has a full-time job. "We can’t get to life skills. And yet somehow, some way, in the midst of this, the guys are doing OK."
She feels lucky that one of the twins’ latest support workers, Bobby Hooper, came to the job with 40 years of experience. He started out at the Columbus State Institute, now known as the Columbus Developmental Center.
"Anyone in this field has to have a compassion for people," said Hooper, 64. "I’ve retired three times. But when people call me, I help out. I can teach the younger people what I’ve been taught."
One of the biggest things he has learned is that staff turnover can lead to devastating setbacks. "It keeps rotating and rotating, and that’s not good," he said. "You go back to zero. I’ve learned that 80 percent of this job is knowing the people."
Marie Crawford, a board member for the Franklin County Board of Developmental Disabilities, worries that community living has been promoted as an ideal without sufficient structure for success.
"We’ve asked these people to move out and be on their own," said Crawford, who has two adult sons with disabilities. "It’s almost a detriment to them when they don’t have a secure staff, a qualified staff, taking care of them.
"It’s not that I want institutions again," she said. "But are we setting some people up to fail?"
Amanda Lynch asks similar questions. The Clintonville resident has a 15-year-old daughter, Isis, whose cerebral palsy caused spastic quadriplegia. They lost a longtime support worker who couldn’t afford to go without pay when Lynch’s daughter suffered a lengthy hospitalization.
"I’ve pretty much been without a provider for the better part of a year now," Lynch said last month. "I don’t exercise, I don’t go shopping, see a movie. I’m in trouble at work because I had to be off all during Christmas break."
She feels bitter about the time parents spend going to workshops trying to understand how to navigate services and systems. "I don’t really want to learn how to work the system anymore," Lynch said. "I want to break it."
Support workers need to be valued, she said. "Not just paid more, but valued."
When her daughter was younger, they looked to the famed physicist Stephen Hawking, whose disabilities and paralysis were severe, and had fun dreaming of all that was possible. By the time Hawking died this year, Lynch had a broader view of his success.
"What if Stephen Hawking’s glasses got smudged?" she said. "It wasn’t just him. It was everyone around him."