HILLSBOROUGH COUNTY, Fla. — A Tampa Bay mother says she is back at square one after 18 months of appeals, letters from multiple doctors, and a fair hearing she hoped would finally resolve her case — Medicaid has once again denied a specialized safety bed for her son with special needs.
Kelli Stuart's son Sawyer currently sleeps in a trampoline. As he gets older and bigger, Stuart says the trampoline is no longer safe.
"We want nothing more than for him to know that he's happy, healthy, and loved. That's what we're looking for," Stuart told Tampa Bay 28 reporter Michael Paluska when we first reported on the bed denials.
But after more than a year and a half of fighting for coverage of a specialized cubby bed, Stuart says she still does not feel heard.
"I think where it gets frustrating is when it feels like we're not being heard," Stuart said.
One of Sawyer's greatest joys is music, and the love poured into him keeps Stuart motivated to keep fighting—but the denials keep coming.
The most recent denial letter told Stuart she had not proven that lower-level options could not meet Sawyer's needs.
"Their most recent denial letter, it says we haven't proven that we've used why lower-level options couldn't meet the needs of your child. These options include reverse locks on bedroom doors," Stuart said.
Stuart says she will not lock her son in his room.
"It's still one of their things to reverse lock him in his room, which I personally feel is unethical and unsafe. I'm just not going to lock him in his bedroom,"
Stuart said.
"It feels like what they're saying is lock him in a padded room. We're not going to cover a medically necessary bed, but you can lock him in a padded room. I don't know if that's really the message that Medicaid wants to be known for, but that's the message that's coming across in these denial letters," Stuart said.
Stuart recently went to a fair hearing — the final step in the process — to explain to a panel why Sawyer needs the bed. She brought letter after letter from doctors.
"The developmental pediatrician, the PCP, the neurologist, the occupational therapist, and our behavioral therapist. All of them have written letters saying, 'Yes, this is a medical necessity for his health, safety, and well-being,'" Stuart said.
But her case was dismissed.
"I wouldn't even say that we got a fair hearing," Stuart said.
"At the very beginning of our fair hearing, they said that because we had requested a different bed, the situation was moot and they no longer had jurisdiction, and so we didn't proceed," Stuart said. "We're starting at square one," Stuart said. “They gave us a week to defend why it was the same bed because it was the same bed. We hadn't changed the bed. We just removed the additional accessories, which made it cheaper.”
After eight years of fighting for her son, Stuart says she does not know what more Medicaid wants from her.
"I don't know what they want from me at this point. What it feels like for me as a mom is I'm supposed to wait until something really bad happens, and I
don't know what that is because we're at a point where the thing that could happen is he could suffocate," Stuart said.
After seeing our first report on Stuart's case, MaryGrace Longoria, an attorney with Southern Legal Counsel, a nonprofit public interest law firm, took the case pro bono.
"Is it rare for what Kelly's going through to be something that other people are going through?" Paluska asked.
"This is very typical," Longoria said.
Longoria says the letters from Stuart's providers have not been sufficient to satisfy Medicaid, but the reason remains unclear.
"In this case, the letters from the providers have not been sufficient. But we're not quite sure why, because the — other than what we get on the notice, we don't get an explanation from their medical expert as to what exactly is why exactly our providers are essentially incorrect, or why they don't meet the policy," Longoria said.
Longoria says no parent she has represented in cases like this has walked away from the fight.
"Because their kids are worth it. Their kids are worth it, and the system shouldn't win. And I think it's that piece of, you know, if we don't keep fighting, then we're accepting the reality, and that reality is not going to lead to a child that's able to flourish," Longoria said.
Stuart says she believes Medicaid should do the right thing.
"It'd be amazing if they would just do the right thing," Stuart said.
"They've probably spent half of what the bed costs trying to fight me and say no at this point. So that's why I'm kind of like, you might as well say yes. You spent enough money just trying to tell me no," Stuart said.
Sunshine Health provided the following statement:
Sunshine Health's top priority is always the health and well-being of our members. Authorization requests are reviewed by board-certified physicians who are licensed in the state of Florida, and in the case of Children's Medical Services, our physicians are board-certified pediatricians. Our process allows for appeals and, as appropriate, other review options, such as peer-to-peer reviews, which are available only to ordering physicians and clinical practitioners.
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