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Students testify in support of disability rights

Two months ago, when Justin Martin ’19 heard about a new rule proposed by Ohio’s Department of Developmental Disabilities (DODD) that would ban his care workers from working more than 40 hours a week, he began to worry he would have to leave Kenyon.

Martin, who has cerebral palsy, relies on four full-time independent care providers, who are  funded through Medicaid to help him with daily tasks and whose overtime hours the DODD is currently trying to cut. Last Thursday, Martin brought 22 other Kenyon students and Gambier residents to a hearing at the Ohio Statehouse in Columbus to testify against the rule. The Kenyon contingent in particular, about half of whom testified, left a lasting impact on the local government. On Tuesday, according to Director of Student Accessibility and Support Services Erin Salva, Ohio Governor John Kasich’s office offered to meet with Martin in response to the testimonies to discuss the rule before a final decision is made on March 21.

The DODD’s proposed rule comes in response to a new federal law that raises the minimum overtime pay for healthcare workers. Instead of increasing the providers’ overtime pay, the rule would comply with federal law by keeping providers from working any overtime hours.

But because two of Martin’s providers work overtime, the rule would also create, by Martin’s estimates, a 14-hour gap in Martin’s week during which he would have no provider. This means that, for 14 hours a week, he would be unable to perform basic tasks.

“We’re talking dressing,” he said. “We’re talking showering, we’re talking going to the bathroom, getting in and out of bed.”

Although Martin could hire another state-funded provider to fill the gap created by the rule, there are too few providers to meet the existing demands, especially in rural areas like Knox County; it took Martin two years prior to arriving on campus to find four providers who lived nearby, and even then, he has experienced a high turnover rate. Martin also has the option of using providers from an agency, as opposed to the independent providers he finds and hires himself. Unfortunately, Martin said, agency providers are tied to alarmingly high rates of sexual abuse and general neglect. On top of this, Martin would have no power to hire or fire the providers he finds through the agency. For these reasons, he does not consider them a viable option.

The DODD’s hearing at the Statehouse in Columbus on Thursday allowed affected parties to voice their concerns before the department makes its final decision mid-March. Martin originally planned to testify alone, until sources close to the DODD, whom Martin would not name, informed him the rule would likely be enacted regardless of the testimonies at the hearing.

“What you need is a big media circus and a bus full of people,” his source reportedly told him.

Martin posted on Facebook asking the Kenyon community to join him in Columbus. With the help of Adam Aluzri ’19, he approached Salva for Student Accessibility and Support Services funds to rent three College vans for the group.

This is the second time in two years Martin has defended the independent providers program in front of the DODD, continuing a battle he said began before he was born. In 2015, as a high school student, he testified before the department to oppose legislation that would have eliminated the independent provider program entirely. Martin believed he made the decision-makers change their minds. He said he heard them say, “You’ve really opened our eyes; we’re not touching the independent provider system.”

“And yet,” Martin said, “here we are, two years later.”

Parts of Martin’s testimony described that previous experience with the Kasich administration. It also addressed the support he had received from others at Kenyon. “The 22 people behind me took a journey that I’m not sure anyone in the Kasich administration has bothered to take,” he said.

Most of those 22 people were fellow students and friends. Former Director of Counseling Services Patrick Gilligan and one of Martin’s providers, Sara Young, also testified. Many of their statements emphasized the bonds they had formed with Martin and the impact the rule would have on their lives by association.

Speaking in front of the DODD, Aluzri said, was physically and emotionally exhausting. The group alternated between listening to the testimonies and taking breaks, during which they ate pizza Martin’s mother had ordered for them.

Jess(i)e Marino ’18 was struck by how close they were able to stand to members of the DODD. 

“I could see the two people who were taking notes and emotionally responding,” Marino said. “At the very end of my testimony, one of them smiled.”

Several testimonies made Martin cry, and he said the experience emphasized for him the value of his community at Kenyon.

“This is not something that I want to be doing,” Martin said. “I want to be, like, doing papers on James Joyce and watching Quentin Tarantino movies with my friends and worrying about attractive people. I don’t want to be the kid constantly fighting the government.”

In the weeks until the DODD announces their decision concerning the rule, Martin is urging the Kenyon community to call the Kasich administration daily. He wants the government to see that, if the rule passes, it will have a substantial impact on Kenyon.

“Even after the 22 testimonies they heard, if they don’t understand that,” he said, “then we’re facing people that are a lot more narrow-minded than we realized.”

Frances Saux

Frances Saux is Arts Editor of the Collegian.