TAMPA, Fla. – Esther JeanBart leaned over her son’s wheelchair, caressing his face and trying to make him giggle. Gianni JeanBart was under the weather, but still his eyes rolled toward her and his mouth widened, cracking a smile.

Esther JeanBart said she has missed the sound of Gianni’s voice the most. In 2017, the U.S. Marine was in a motorcycle accident on his way to work, about a month shy of his 20th birthday.

Since then, Gianni has undergone more than a dozen surgeries. Now quadriplegic and prone to seizures due to a traumatic brain injury, he requires around-the-clock care from licensed health professionals. For the past seven years, he’s lived with Esther in their home in Valrico with his medical care covered by Medicaid.

“He is still here,” she said. “He fights every day.”

But on April 1, Gianni’s Medicaid coverage was abruptly terminated without notice from the Florida Department of Children and Families, the agency that determines eligibility.

Gianni is one of several patients — the full number is unknown — to lose access this month to Medicaid’s Home and Community Based Services, which is geared toward patients who are disabled or have extensive long-term-care needs. The program allows beneficiaries to receive services in the home, rather than in an isolated institution or long-term care facility.

Since the beginning of April, Miriam Harmatz, advocacy director and founder of the Florida Health Justice Center, said the organization has received panicked calls from caregivers and patients. Most said they learned their coverage was terminated only after nurses and other providers began canceling services.

In a statement, a spokesperson from the Florida Department of Children and Families said the agency was not aware of any HCBS participant who inappropriately lost Medicaid coverage without receiving proper notification.

“The examples you have provided the Department from so called ‘advocates’ show that each individual was properly noticed and either did not respond timely or no longer met financial eligibility requirements,” said Mallory McManus, the spokesperson. “As we have shared previously, those who were disenrolled because they did not respond to our requests would have been contacted by us up to 13 times via phone, mail, email, and text before processing their disenrollment.”

Harmatz said this is not the reality for a number of home care recipients who contacted her organization. She said her organization reviewed several patients’ Medicaid access portals, and saw no notifications from the agency warning them of termination.

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