Esther Jeanbert leaned over her son's wheelchair and stroked his face, trying to make him laugh. Gianni Jeanbard was under bad weather, but he still turned his eyes on her and spread her mouth wide in her smile.
Esther Jeanbart said she will miss Gianni's voice the most. In 2017, a U.S. Marine was involved in a motorcycle accident on his way to work about a month before his 20th birthday.
Since then, Gianni has undergone more than a dozen surgeries. His traumatic brain injury has left him quadriplegic and prone to seizures, requiring 24-hour care from licensed medical professionals. For the past seven years, he has medical insurance and lives with Esther in his home in Valico. Medicaid.
“He's still here,” she said. “He's fighting every day.”
But on April 1, Gianni's Medicaid coverage was abruptly terminated without notice from the Florida Department of Children and Families, which determines eligibility.
Gianni is one of several patients (the total number unknown) who lost access to Medicaid's home and community-based services this month. This service is aimed at patients with disabilities and those who require long-term care. The program allows beneficiaries to receive services at home rather than in isolation or long-term care facilities.
Miriam Harmatz, founder and advocacy director of the Florida Center for Health Justice, said the center has been receiving panicked calls from caregivers and patients since early April. Most said they only learned their insurance had been discontinued after nurses and other health care providers began canceling services.
A spokesperson for the Florida Department of Children and Families said in a statement that the agency is not aware of any HCBS participants who improperly lost Medicaid coverage without receiving proper notification.
Spokeswoman Mallory McManus said, “Instances provided to the department by so-called 'advocates' indicate that individuals either failed to be properly recognized and responded in a timely manner or no longer meet financial eligibility requirements.” It shows,” he said. “As we have previously shared, those who unsubscribe for not responding to our requests will receive up to 13 calls from us via phone, mail, email, or text message before we process their unsubscription. You should have been contacted.”
Halmatz said this is not the reality for many home care recipients who have contacted her organization. She said her organization reviewed several patients' Medicaid access portals and did not see any notices from the agency warning of termination.
These patients are the latest Medicaid beneficiaries to find their coverage threatened during the state's redetermination process, which began in April 2023. Florida's Medicaid enrollment has ballooned to 1.7 million people during the pandemic. At this time, the federal government gave states additional funding to keep people covered even in emergencies. They were no longer eligible. Once funding ended, the Department of Children and Families began conducting eligibility checks for the first time in years.
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State officials are required to give patients at least 10 days' notice if they lose Medicaid coverage. This notice must include the reason why coverage is being terminated.
But most long-term home health patients have no reason to lose eligibility, Halmatz said.
“Think about who they are and what they deal with,” she said. “They were so disabled that they could easily go into a nursing home or facility, but suddenly home health help stopped coming. How do they get out of their wheelchairs? How do they clean themselves? …The level of concern about interruptions increases.”
Halmatz and her organization are calling for all home health patients who were taken off the roster to be reinstated immediately while the state assesses what happened. In the email she sent, She told general counsel for the Department of Children and Families and the Florida Agency for Health Care Administration that this was “the only logical and humane solution.”
“We're in a panic phase right now,” Halmatz said. “We shouldn't have to figure out every single reason why someone lost their insurance.”
Jean Bart started worrying about her son's health insurance in mid-March, when health care providers had already begun canceling appointments. They told her the computer system showed Mr. Gianni's coverage would end on April 1.
She was trying to order a medical brace to help stretch Gianni's arm and hand muscles. However, it takes 3 to 4 weeks to create the braces. In an email Gimbert shared with the Tampa Bay Times, employees at the orthotics company wrote that they were concerned that Medicaid would not pay. The converted van service that Gianni uses for physical therapy and other outings has also been canceled.
To Jeanbert, this meant little. Her son was scheduled to receive Medicaid renewal in July 2024. She said she called and emailed Sunshine Health, which provides her son's medical insurance, and state officials.
Jean Bart said representatives from all three organizations told him Gianni's reporting was safe. A Sunshine Health case manager told her that the April 1 expiration date could be a “ghost expiration date,” after which the insurance would automatically renew.
“If Medicaid is going to give me something in writing that says I'm eligible, why would I question it?” she said.
But just to be sure, she called Sunshine Health again on April 1st. This time, her agent told her that Gianni's interview had been terminated.
Jean Bart said she never received any written notice or explanation from the state.
Some of Gianni's full-time nurses continued to work without pay, but they did not work the full 24 hours a day Gianni needed. The rest of the time, Jean Bart cared for him alone through the night.
Jean Bart said that as a mother, it was an honor to take care of Gianni. However, she has no medical training and she has to run her own home health business, along with her three other children, ages 11 to 15, so she is left on her own. She knew that she didn't have what she was capable of.
“He can't go out. I don't have a car to take him in,” she said. “He can't go outside and see the sun, he can't wear braces, he can't get any therapy to move his muscles. … We can't put him in a chair, so he's stuck in bed. It is aggravating and has a negative impact on his health and mental well-being.”
Jeanbert said she felt like the health care system was trying to erase her son.
“As long as I have breath, I will fight,” she said. “This is no good.”
Ten days later, she received a voicemail from a health care agency official telling her that Gianni's coverage would be restored by the next morning. But when she called to confirm around 11 a.m. Thursday, he was still not in the system.
Even if the problem were resolved, she said, Please tell me what happened so it doesn't happen again. ”
Halmatz said it's difficult to know how many patients are like Gianni. Are they affected, or what caused many ostensibly eligible recipients to lose coverage? She said this is part of a larger pattern in Florida's difficult redetermination process.
“To DCF's credit, the plan was to put the most vulnerable last,” she said. “However, the agencies involved do not have dedicated phone lines…As far as we know, no special teams or units have been established (to assist). …Florida has not done anything like that.”