Caregiver, health care advocates fear impacts of TennCare work requirement proposal
Malcolm Alaimo celebrated fourth birthday on March 14.
Throughout the day, which began with Mickey Mouse pancakes and ended with a Curious George cake, he played outside with his family and opened presents.
But unlike other 4-year-olds, every birthday he celebrates is a minor miracle.
That’s because Malcolm was born with congenital cytomegalovirus – an infection that has resulted in a host of neurological deficits and organ functioning issues.
Today, he’s bilaterally deaf, has issues with his heart and kidneys, suffers seizures and has cerebral palsy.
Despite such obstacles, he’s able to articulate sounds, listen to music, walk and run – he’s lovingly called the Usain Bolt of toddlers – all thanks to medical care, therapy and the omnipresence of his mother, Danielle Alaimo.
“Malcolm wouldn’t be alive if he didn’t have a constant continuity of care monitoring everything,” Alaimo said.
But Alaimo fears her days of providing for Malcolm could be in jeopardy, thanks to a bill that’s one step away one from landing on Gov. Bill Haslam’s desk.
The legislation, sponsored by House Speaker Beth Harwell, R-Nashville, and Sen. Kerry Roberts, R-Springfield, could eventually lead the state to impose work requirements on TennCare recipients, like Alaimo.
She’s a TennCare recipient in order to serve as a full-time caretaker of her son.
Who would be impacted?
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Although the measure doesn’t immediately enact such work requirements, it directs the state to submit a waiver to the federal government seeking to impose them on able-bodied, working-age TennCare recipients.
Those affected by the legislation would be parents or caretakers with children from 6 to 20 years old, which would impact Alaimo in just two years.
Alaimo fears the legislation, which is up for a vote on the Senate floor Thursday, would give her few choices: get a job, seek disability with the state or move her family once again.
With two children, Alaimo is frank in her assessment of her prospect of getting a job, given Malcolm’s needs.
She said she’s only qualified for a low-paying job. And if she worked, she’d have to pay for a babysitter and a nurse to care for her son.
“If we’re all working the same amount of hours and I’m making the least amount, I can’t pay these guys,” Alaimo said in an interview.
Despite having traumatic brain surgery last month, she doesn’t want to have to get disability.
And the prospect of leaving the state is daunting – the Alaimos just moved here in September, after Hurricane Irma forced them out of South Carolina.
“The idea that I have to pick and choose between getting a job and continuing to fight for him makes me feel like Tennessee doesn’t want me here and perhaps I should leave,” she said. “Though the community loves me, the politicians don’t care.”
Alaimo has increasingly felt slighted as the legislature considers the work requirements bill. She’s reached out to Harwell and Roberts, who have only recently reached out to her through social media.
They’ve tried to tell her she would be exempt from the measure, but Alaimo is skeptical. She points out there’s no exemptions outlined in the one-page bill.
Assurances from supporters
In a video he posted on Facebook on Monday, Roberts touched upon people like Alaimo who are caretakers.
“That person is not automatically subject to the work requirement because this is an opportunity for TennCare to sit down with (the Center for Medicare and Medicaid Services) and say this is the way we want to structure it and at the end of the day we have the opportunity to do what’s necessary to protect the people who are most vulnerable.”
But Alaimo isn’t the only one worried about the measure.
Michele Johnson, executive director of the Tennessee Justice Center, said the bill arose after Harwell requested a state comptroller’s report over concerns about determining TennCare eligibility.
The comptroller’s report noted TennCare recipients have had their coverage terminated without warning, among other issues. In addition to recommending several ways to fix such issues, the comptroller noted the TennCare, the state’s version of Medicaid, does not have a computer-based system.
Johnson said the lack of a computer system, in addition to the decision to lay off county office workers who checked eligibility when the federal Affordable Care Act was implemented, has been a major factor complicating the program.
“Instead of saying let’s really fix this, (Harwell) says let’s add a whole other layer of complexity to it,” Johnson said, referring to the speaker’s legislation.
Johnson says the work requirements legislation is also flawed because it is unclear whether the measure is targeting people like Alaimo or others altogether.
“It’s very tricky and very fast tap dancing,” she said.
Johnson also said that TennCare could’ve written a federal waiver request without action from the legislature.
“Most state Medicaid agencies that have asked for work requirements did it without the legislature,” she said, pointing to actions by Kentucky, Arkansas and Ohio.
“It’s clearly legislation written for an attack ad, not for people who we expect to govern and wrestle with these real details of Tennesseans.”
Others to speak out against the bill include the Council on Aging of Middle Tennessee, the YWCA of Nashville and Middle Tennessee, the Tennessee Disability Coalition and Prevent Child Abuse Tennessee.
Costs raise concerns
Aside from Alaimo and Johnson’s concerns, other questions have been raised about the cost of the legislation.
As originally drafted, the measure was estimated to cost millions of dollars a year to maintain.
The bill has since been amended to use reserve funds with the state’s Temporary Assistance for Needy Families program.
Despite being financed by the federal TANF funds, some say the amended proposal is simply a cost-shifting measure, which still places a burden on the state’s coffers.