“I am at my wits end,” Thelma wrote to the Florida Health Justice Project.

Thelma, the full-time caregiver for her mother, had just received notice from her mother’s managed care plan cutting her mother’s home health services. This was the second time services had been cut during the pandemic.

Her mother, Hortense, who suffers from advanced Alzheimers, is enrolled in Florida’s Medicaid Long-Term Care (LTC) Waiver program, where enrollees receive home health care and other services needed to live at home as an alternative to nursing home care, which is significantly more expensive. These Medicaid Services – Home and Community-Based Services (HCBS) – are provided to eligible individuals through Medicaid managed care plans.

About 5 years ago, when Hortense’s Alzheimers progressed to the point where she could not be left alone, a representative from the managed care plan approached Thelma about becoming her mother’s full-time caregiver. The representative assured Thelma that if she left her job to take care of her mother, she would be paid for 41 hours each week. Although the pay was only $10.76/hour, Thelma did not hesitate to quit her job as a court reporter so her mother would not have to go into a nursing home.

“I’ll take care of her until her time comes, like she took care of me,” Thelma says. “I’m just grateful God gives me the strength.”

But after being promised 41 hours of pay, the plan has reduced Thelma’s hours, even while her mother’s Alzheimers progresses.

“I’m so frustrated,” Thelma says. “Caregivers need a decent income. I feel for others who are going through the same situation.”

Hortense uses a walker with difficulty. She can no longer see well enough to watch television or read. Her speech is incomprehensible. She can’t hold a fork to feed herself. Her only solace is listening to music.

“I bathe her and dress her. I brush her hair, clean her teeth. Make her breakfast, lunch, dinner. I prepare food that she can eat with her hands. She’s like a little child,” Thelma says.

In March 2020, when the plan reduced the hours that Thelma would be paid for her mother’s care, she appealed. At the hearing, she found herself facing a panel of strangers and a hearing officer who would decide how much help her frail 85-year-old mother needed.

At the hearing, Thelma says she was overwhelmed: “I didn’t know what I was going into. I’d never done this before. I represented myself for my mum.”

The strangers before her, representatives of a managed healthcare company, testified that her mother, whose health has deteriorated in the last year, needed less help. The hearing officer agreed, upholding the plan’s decision to cut 4 hours/week from Thelma’s pay.

And most recently, Thelma got notice that the plan decided again to cut another 7 hours a week of the care which Thelma provides to her mom 24/7. They also terminated all of the 7 meals that had been provided.

“I’m so frustrated,” Thelma says. “Caregivers need a decent income. I feel for others who are going through the same situation.”

She contacted the Florida Health Justice Project (FHJP) for guidance. She found out her situation is not unique in Florida, where frail seniors can wait years for homecare services, which often are inadequate and inconsistent.

Thelma’s mother Hortense was once a strong, independent woman who left her native Guyana alone to emigrate first to England, then the U.S. She supported herself and three children working as a secretary. In her later years she became a nanny. She also found time for others – always a helper, a volunteer, and a church leader who befriended the less fortunate.

“My mother always said, “Be kind. Help others. You never know what turn your life will take. You may need help yourself someday.”

Now she’s the one who needs help. Her daughter has stepped in, providing care 24-7, but she needs help, too, and she wants to share her story.

With guidance of FHJP, Thelma is appealing the most recent plan decisions to cut her back home health aide hours and services, including meals.

She says her experience has “put a fire” under her to fight for her mother’s care and other families who may be suffering similar fates.

“Like my mother always said, ‘You have to help others.’ This is my purpose now,” adding, “There are so many people out there in the same situation. They have no idea what to do. It’s not right. It’s not right.”

Post-Script: Florida Health Justice Project represented Hortense at an administrative hearing. After FHJP engaged in significant discovery, including taking depositions, the managed care plan agreed to reinstate her home delivered meals and personal care hours As a result, Hortense is able to stay at home with her daughter, Thelma, and receive the care she desperately needs.