SPRINGFIELD — K.L. Cleeton, a 27-year-old Effingham resident who is paralyzed from the neck down due to spinal muscular atrophy, has an invitation for Gov. Bruce Rauner and the Illinois Department of Human Services officials who want to cap the hours his parents are paid to provide in-home care for him.
“Come down to Effingham, my hometown, and see what a day in the life is like with me,” Cleeton said Thursday during a hearing in Springfield on the department’s proposal to limit personal assistants paid through its home services program to working 40 hours per week.
The department implemented the policy in May in response to a U.S. Department of Labor ruling that said home care workers must earn time-and-a-half overtime pay if they work more than 40 hours per week. But the Rauner administration put the policy on hold in August just as a union representing 25,000 home care workers was readying to file a class-action lawsuit challenging it.
The administration is now seeking to implement the policy through the General Assembly’s bipartisan House and Senate committee in charge of approving such rules. The Thursday hearing in Springfield followed one held Monday in Chicago.
The department’s proposed rules would require clients in the home services program to hire enough personal assistants to cover the hours of care they need each week without requiring overtime. Any personal assistant who works more than 40 hours in a week would be required to submit written justification to the department for approval, and anyone who works unapproved overtime three times would be barred from being paid through the program.
Vivian Anderson, who oversees the program for the Department of Human Services, said the proposal is about saving the state money and making sure clients are receiving high-quality care from providers who aren’t overworked.
“Working an excessive amount of hours is not good public policy,” Anderson said in an interview last week.
Cleeton, one of several clients who testified at the Springfield hearing, said he needs help around the clock with every aspect of daily life, from eating, which is difficult because he has trouble swallowing, to scratching an itch. His needs go well beyond the combined 80 hours per week that his parents, Ken and Lillie, would be allowed to work under the department’s proposed rules.
But Cleeton said he and his parents have developed a system over the years that works well for them, one that’s allowed him to graduate from the University of Illinois with a degree in advertising and start his own video production business. He doesn’t want to have to hire a stranger to help with the intimate aspects of his care.
“Really, what this comes down to is freedom of choice and independence,” Cleeton said.
Clients like Cleeton and their caregivers aren’t the only ones raising concerns about the proposal.
Ann Ford is executive director of the Illinois Network of Centers for Independent Living. The 22 centers across Illinois have contracts with the state to train clients and caregivers in the home services program.
“We feel that the cap that’s been placed on overtime is very inflexible,” Ford said before the hearing. “We feel the exceptions are limited and very hard to achieve, and we feel that the consequences that are built in are pretty punitive.”
Ford’s organization isn’t alone in that assessment.
The federal Labor Department sent a letter to the state noting its “significant concerns” with the proposal. Among those concerns, according to the letter, is the lack of a “robust exceptions policy,” which could result in workers providing off-the-clock care in violation of federal law.
“Without an appropriate exceptions policy, it is likely that either employees who care for vulnerable individuals will feel that they have no choice but to work uncompensated hours … or consumers will be left without adequate assistance,” the letter states. “Neither outcome is acceptable or necessary.”
The department now has time to respond to the public comments before submitting its final proposal to the Legislature’s Joint Committee on Administrative Rules for its OK.
Anderson said the department appreciates the feedback it has received and will consider tweaks to the policy because no proposal is perfect.
However, she added, “I think it is pretty close to perfect.”
The policy may run into another roadblock if it makes it through the rulemaking process.
The Illinois Labor Relations Board on Sept. 29 called for a hearing on whether the department violated labor law by implementing the rules without first negotiating with the Service Employees International Union Healthcare Illinois, which represents workers in the home services program.