Therese Williams is 45 years old. She lives in Naples, Florida with her sister, Kathleen, a nurse. This year Therese published her first book.

As a toddler, Therese, the youngest of 15 siblings, contracted chickenpox and then spinal meningitis, an extremely rare complication of the chickenpox virus. The meningitis left her quadriplegic and with significantly weakened lungs. But with the support of her parents and her siblings, by the time she was 5, Therese was able to participate fully in school and family activities. She spent her nights in an iron lung.

At age 18, her life changed dramatically when a tracheotomy left her with a fistula, a hole, between her esophagus and trachea. To this day, her airway must be suctioned every single time she eats or drinks so that she does not choke, and she requires around-the-clock care. Notwithstanding her profound challenges, she persevered for 11 years and graduated from Ave Maria University with a degree in Catholic Studies in 2017.
The extraordinary challenges posed by Therese’s wrongful loss of LTC benefits would have been averted had Florida not recently made a change to the contract between the state Medicaid Agency and Medicaid LTC managed care plans.

Until 2014, Therese’s parents provided her care, foregoing any outside help. In 2015, with her parents both in their 80s, Therese moved in with her sister Kathleen. She enrolled in a Medicaid Long-Term Care program (LTC), a program that provides needed home health care to individuals at risk of institutionalization. Through this program, Therese and her family hired a caregiver for the first time.

While Therese is grateful for the LTC program, serious problems with the program leave her at risk. Chief among these challenges is the low wage– just $10.79 per hour– paid to her home caregivers. At that low rate, most aides don’t stay for long. Thus, in 5 years, she’s had approximately ten different aides. And because Therese’s care is complex, Kathleen and Therese must train every new aide. Losing a new aide every handful of months is enormously stressful and exhausting.

Even more stressful is the fact that Therese has twice been erroneously terminated from her Medicaid LTC benefits, most recently in July 2019. Even though there was no dispute that the termination was an error, correcting it did not happen quickly. After three weeks without pay, Therese’s aide was forced to quit, and Kathleen and a second sister were forced to take over full-time care. Their own lives and jobs were put under significant, unnecessary stress as they cobbled together a schedule of caring for their sister.

After endless advocacy by Therese, her sisters and Cathy Lucrezi, an attorney with Broward Legal Aid, the agency’s error was finally corrected, and Therese’s Long-Term Care benefits were reinstated. But this bureaucratic nightmare left Therese without an aide for over six weeks, a perilous situation for someone who requires 24-hour care.

The extraordinary challenges posed by Therese’s wrongful loss of LTC benefits would have been averted had Florida not recently made a change to the contract between the state Medicaid Agency and Medicaid LTC managed care plans. Specifically, that change eliminated the requirement that plans continue to provide services for 60 days for enrollees who lose Medicaid eligibility. Therese’s real-life “horror story” illustrates why this particular contract change, made without meaningful input from consumers and their advocates, needs to be revisited.