When her 87-year-old mother, Mankuar, fractured her back, it fell upon her daughter Diwantie to pick up the pieces, becoming her mother’s voice and caretaker through the travails of hospital and rehabilitation center visits.

Today, Diwantie, age 58, works round the clock to take care of her wheelchair-bound mother who suffers from dementia and struggles with other ailments, including heart disease, diabetes, and chronic pain from osteoarthritis. Her mother’s Medicaid managed care company has been uncooperative in providing the assistance and supplies her mother needs to live safely at home.

“It’s a 24-hour job for me to take care of my mother,” Diwantie says. “I’ve been home with her since March. I don’t know what to do anymore.”

Diwantie says her mother wasn’t ready to go home when the last skilled nursing facility discharged her. She begged them to keep her so her mother would receive the care she needed, but they refused. Since March, Covid-19 has surged in Florida, with nursing home patients suffering the highest death rates. Diwantie is glad her mother is with her, but she needs help.

Diwante and her 17-year-old son have no income, and she has been borrowing money from family members to pay rent and other bills. Her mother receives a Social Security check and food stamps. Her mother’s diabetes requires a special diet so she and her son have limited their own nutrition to one meal a day, she says.

Diwantie was forced to leave her job as a tutor after her mother became incapacitated. She has been unable to go back to work.
“It’s a 24-hour job for me to take care of my mother,” Diwantie says. “I’ve been home with her since March. I don’t know what to do anymore.”​

Under a special program, the managed care company can pay family caregivers on an hourly basis to take care of loved ones in their own homes. Diwantie said the company initially offered to pay her 40 hours a week but has since reneged on that offer and only pays her for 2 hours a day.

“I’m taking care of her 24 hours a day and I don’t expect to be paid that but paying for only 14 hours a week is unreasonable,” Diwantie says. “I’m keeping her out of a nursing home which is much more expensive to the state. I also am keeping her safe from Covid-19,” she adds. “Are they trying to make me destitute and risk my mother’s life?”

Diwantie contacted the Florida Health Justice Project to help get better care for her mother. She also wants to share her family’s story so that others in a similar situation can learn their rights and avoid the pain and suffering her family has endured.

“I’m so scared. I’ve been living in the shadows for so long,” Diwantie says. “My experience has been so awful and I don’t understand why my mother and I have been treated so poorly. I’m helping to take care of her rather than leaving her in a nursing facility that’s dangerous and more expensive.”

Post-Script: Florida Health Justice Project represented Diwantie at an administrative hearing. After months of litigation, the managed care plan offered her 40 hours per week of home health care aid and medically necessary supplies. As a result, Diwantie can remain financially solvent while being able to fully care for her infirm mother, rather than needing to put her mother in a nursing facility, where COVID would be an ever-present threat.