MCARTHUR — The letters to Columbus go mostly unanswered. Amber Radune and Juanita Bobo have written to legislators, Medicaid officials, managed-care companies and the governor, imploring them to consider the situation, begging them to find solutions.
"If Amber wants to scratch her nose without me, she can't," Bobo said. "But if I can't make enough to pay my bills, how will I be there for her?"
Bobo has been Radune's primary aide for more than 15 years. The assistance she provides allows the 32-year-old Radune to live in her Vinton County home instead of in an institution or nursing home, and to remain active despite the congenital condition that left her with fixed joints and virtually no use of her hands and legs.
Before Bobo took over the bulk of her care, Radune had suffered through too many bad experiences with workers who were unreliable or poorly trained by the companies that employed them. Some didn't even know how to use the equipment that safely lifts Radune in and out of her wheelchair. "So there I'd be, hanging in the air," she said. "Can you imagine if I weren't able to communicate?"
Morning no-shows left her trapped in bed. "I'd finally call my mom, and she'd have to leave work to help me," Radune said. "I had a lot of struggles with agencies."
Bobo first worked for a home-care agency, too. She made less than $8 an hour, using her own car and gas to reach clients across multiple southeastern Ohio counties. She finally decided to become an independent care provider, billing Medicaid directly as a contractor instead of working through a private agency.
The move gave her and Radune more control, and it significantly increased Bobo's pay.
Now, after nearly two decades in the business, the pressures brought about by changes in policy have pushed her backwards. Bobo reluctantly became a private-agency employee again in January. Although she likes the company and makes close to the top rate for an aide in her area, that's just $11 an hour. She's angry, hurt and, like so many direct-support workers, wondering how policymakers can continue to embrace such a disconnect between the value of their publicly funded work and the size of their paychecks.
"I don't think they care about us. They don't respect us," said Bobo, who now earns hundreds of dollars less each month. "It is sad that people at Aldi's get paid more than I do."
Bobo could no longer manage the stress that she and others say the state has heaped on independent providers over the years with cumbersome billing procedures, pay cuts and a plan to phase independent workers out of the system in favor of agency employees. State officials said that effort, which was met by a huge public outcry, remains shelved.
But additional hurdles always seem to arrive, Bobo said. The new cellphone device that she and Radune are required to use to electronically verify visits is glitchy and doesn't work well in hilly Appalachia, they said. Bobo was worried that without an agency to back her up, her performance could be questioned or her pay docked.
"This is supposed to make us not commit fraud," Bobo said of the device. "Well, this thing does it for us. It's not accurate."
The company she recently began working for, Wise Medical Staffing in Athens, does all it can to recruit and retain good employees, supervisor Teresa Lehmann said. "We're not just trying to put a warm body in somebody's home."
The task is tall. In exchange for high-responsibility work that is physically and mentally demanding, Wise Medical offers aides $9 to $11.50 an hour. "There is only so much you can do," Lehmann said. "Our pay is competitive, but it's still nothing like what I think they should get."
She recently spent an entire day trying to hire people in Washington County, where she often has to turn down requests for services. "Not one person came in for an interview," Lehmann said.
Bobo is torn; she and her husband have bills to pay and a daughter in college, but she can't bear the thought of leaving Radune, who seems more daughter, sister or friend than client. Bobo tries to describe their relationship and winds up crying.
"Stop it," Radune says gently. "We're family. That's the way to put it."
Radune feels as though she has to fight to meet the state's own stated goal, which is for people like her be able to live in their home communities. She testified before legislators in 2015 as advocates successfully pushed back against the phase-out of independent providers, and she took on Medicaid and a managed-care company in 2014 when they tried to dramatically reduce her services.
"Somehow, it got into the paperwork that I could get up out of my chair and get myself something to drink and take myself to the bathroom," Radune said.
She and Bobo fired off a lot of letters then, too. They are tired of explaining Radune's obvious vulnerability and Bobo's need for a living wage.
"Amber stays strong, but in the privacy of our times, she's asked, 'Niti, what's going to happen to me?' " Bobo said. "All I want — all Amber and I have ever wanted — is to not be scared."