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Low pay for caregivers a burden to those who rely on the care

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NASHVILLE, TN (WSMV) - Catherine Perkins relies on care 24/7.

“It’s kind of a struggle to live with this disability,” Perkins said.

The 39-year-old has a genetic disorder called Spinal Muscular Atrophy, or SMA, a muscle wasting disease which often confines her to a bed.

“I basically have lost all of my muscle usage that I had all of my life,” Perkins said.

She’s part of TennCare’s Consumer Direction Service, which gives Perkins the ability to hire whoever she wants, and the state sets the rate she can pay them.

TennCare said workers are paid by a contracted Fiscal Employer Agent supporting the Employer of Record. The Employer of Record (the person receiving services or their representative for Consumer Direction) determines the worker’s rate of pay from a range of rates set by the state.

“I can’t find anybody to work the nightshift,” Perkins said.

She said finding someone to fill that spot has been a burden.

“When I first signed up for this program back in 2012, they were only paying $8 an hour and I couldn’t find anybody to do it. I ended up in a nursing home for three years,” Perkins said.

Perkins said she’s contacted TennCare about a rate increase.

“They know all about it, and their words are ‘It’s that way everywhere,’ and I’m like ‘But it shouldn’t be,’” Perkins said.

Cady Kaiman with the Tennessee Justice Center is calling on TennCare and state leaders to support caregivers by paying them what they deserve.

“This is something that needs to be done right now because individuals all across the state of Tennessee are suffering,” Kaifman, a supervising attorney with Tennessee Justice Center, said.

News4 reached out to TennCare about Perkins’ situation and to discuss the Consumer Direction Service.

First they agreed to an on-camera interview but backed out at the last minute. TennCare sent an email saying that they are supporting people in the Consumer Direction Service by increasing wages for workers using federal funds from the American Rescue Act passed by Congress in 2021.

Perkins hopes more caregivers enter the field and TennCare continues to listen to those who need care the most.

“They need to talk to the people that are going through what we’re going through,” Perkins said.

While working on the story, Perkins gave News4 great news. She discovered from her care coordinator that she can now pay her caregiver up to $15 an hour after months of searching for one to fill the nightshift.

TennCare released a statement saying in part:

“TennCare does not find eligible caregivers. TennCare contracts with managed care organizations which in turn contract with providers who are responsible for hiring eligible caregivers. For individuals choosing Consumer Direction, the individual or their representative assumes that responsibility as the Employer of Record.

"The pandemic has undoubtedly affected not just the HCBS workforce, but the workforce broadly, affecting nearly all industries. TennCare has taken steps to support both providers and individuals in Consumer Direction in their efforts to hire and retain staff by prioritizing wage increases to the frontline HCBS workforce as part of federal Medicaid Enhanced HCBS FMAP funding made available through the American Rescue Plan Act. The plan, which reflects extensive input from HCBS stakeholders, calls for an investment of $137.5 million for this purpose - $50 million annually. TennCare has submitted a request for recurring funds to continue the wage increases once the federal funds expire. In Consumer Direction, this means that the highest rate that can now be paid to a worker for CHOICES Attendant Care has increased from $13/hour to $15.59/hour – more than twice above the federal minimum wage.”

TennCare added that there are roughly 12,000 people receiving home and community-based services in the CHOICES program. About 2,300 have elected to receive one or more services through Consumer Direction. is now with you on the go! Get the latest news updates and video, 4WARN weather forecast, weather radar, special investigative reports, sports headlines and much more from News4 Nashville.

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