Vulnerable Florida patients scramble after abrupt Medicaid termination

“If Medicaid is going to give me something in writing, showing me he’s qualified, why would I question that?” she said.

But she called Sunshine Health once more on April 1 — just to be sure. This time, the representative told her Gianni’s coverage had been terminated.

JeanBart said she never received written notice or an explanation from the state.

Some of Gianni’s regular nurses continued to work without pay, but not always for the 24 hours a day he required. The rest of the time, JeanBart was on her own, caring for him through the night.

As his mother, JeanBart said it’s an honor to care for Gianni. But she has no medical training, and with three other children between the ages of 11 and 15, as well as her own home health care business to run, she knew she wasn’t equipped.

“He’s not able to go out; I don’t have a car to accommodate him,” she said. “He can’t go out and see the sun, get his braces, get therapy to move his muscles. … I can’t put him on a chair, so he’s stuck on a bed. That’s deterioration, that’s detrimental to his health and his emotional well-being.”

It felt like the health care system was erasing her son, JeanBart said.

“As long as I’m breathing, I’m going to fight,” she said. “This is not OK.”

After 10 days, she received a voicemail from an Agency for Health Care Administration employee, who told her Gianni’s coverage would be reinstated by the following morning. But when she called to confirm around 11 a.m. Thursday, he still wasn’t in the system.

Even if the issue gets fixed, she said, “It’s not over. Tell me what happened, so I can be sure it won’t happen again.”

Harmatz said it’s difficult to determine how many patients like Gianni have been affected or what caused so many ostensibly eligible recipients to lose their coverage. It’s part of a larger pattern, she said, in Florida’s bumpy redetermination process.

“To DCF’s credit, the plan was to put the most vulnerable people last,” she said. “But we don’t have a dedicated phone line at the relevant agencies … as far as we know, there is no special team or unit set up (to assist). … Florida didn’t do that.”