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State Agency Cuts Care For Tampa Bay Woman With Severe Autism, Mom Says

by: Mahsa Saeidi

Posted: / Updated:

TAMPA, Fla. (WFLA) — A Tampa Bay area mother is pleading for help after her daughter lost access to critical care.  

Kathy Lewis’ daughter, Remington, lives with a severe form of autism that requires assistance. For nearly five years, the young woman has received around-the-clock care at home. Now the state is threatening to cut that care.

Lewis says this couldn’t come at a worse time.

The mom tells 8 On Your Side her daughter’s condition is only getting worse. She screams for hours, runs out of the house and struggles to sleep.

Remington is currently enrolled in a Medicaid waiver program operated by the Agency for Persons with Disabilities, or APD. Since 2017, Lewis says, the state has sent staff to Remington’s home around-the-clock.

Now, after an annual agency review, the state determined Remington can be home alone approximately seven hours a day.

“Oh it’s stress non-stop, all day, every day,” Lewis said. “The money is there, set there, for our children and you have to fight to get it.”

A fight to get the money – and a fight to keep it.

Lewis received a letter from APD in January explaining the cuts set to take place this year. Remington previously qualified to get nearly $150,000 a year. The state proposes slashing that amount by a third, meaning Remington would qualify for less than $100,000.

Why? According to a letter from APD, the “requested hours are excessive” since Remington “independently eats, communicates, walks and completes hygiene activities.”

“She can’t cook, she can’t clean… she has a lot of violent outbursts,” Lewis said. “No one is doing anything about this so I’m glad you’re talking to me today.”

At a news conference in Tampa last week, 8 On Your Side brought up the mom’s dilemma upon receiving the letter to Gov. Ron DeSantis.

“We’ve had issues, there’s been a huge increase in Medicaid, of course, but the reimbursements are low so those are going to go up because it’s harder to get people,” said Gov. DeSantis. “But in that particular case, if you get us that [letter,] I will talk with the agency and we’ll see what we can do.”

With Gov. DeSantis onboard, Lewis hopes the state reverses course.

“The biggest fear is my daughter not having care and being homeless or alone,” she said.

Lewis is appealing the state’s decision. The administrative hearing is set for Monday.

If the Agency for Persons with Disabilities has cut your family member’s care, please email 8 On Your Side Investigator Mahsa Saeidi at MSaeidi@WFLA.com.

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