Hortense’s life is incomprehensibly hard–advanced Alzheimer's has left her unable to do anything for herself, and she is now in hospice. But although her life is one of great difficulties and loss–she has one major blessing: a devoted daughter who takes care of her 24/7. Thelma could not bear the thought of her mother going to a nursing home, or being taken care of by strangers while she was at work so she left her well-paying job as a court reporter in November 2016 to be at home with her beloved "mum."

“I’ll take care of her until her time comes, like she took care of me as a loving single mother,” Thelma says. “I’m just grateful God gives me the strength each day to do this.”

Thelma first shared her story with FHJP in 2020. At that time, her mother’s Medicaid managed care company had reduced her caregiving hours and eliminated home delivered meals. FHJP represented her in an appeal and the plan agreed to reinstate the services.

Thelma's “job” is taking care of her mother through the all important Medicaid program called Participant Directed Option or PDO. Under this program, which is available to people enrolled in Florida's Medicaid Long-Term Care (LTC) managed care plans, enrollees who live in their own home or the home of a family member can choose to “self-direct” certain services, such as adult companion, homemaker, attendant care and personal care. More information on this important program can be found here.

Not only does the PDO program provide people like Hortense with a chance to live their final days with someone who loves them in their own home, it saves the LTC managed care plans and the taxpayers of Florida immense amounts of money. The PDO program pays workers like Thelma $15/hour for a maximum of 40 hours per week. That’s $2400 /month. The average monthly cost of a Medicaid nursing home in Florida is over three times more**.

Anyone who has done this work for someone like Hortense can attest to the fact that this is not a 40/hour week job. It is actually 168 hours/week. It is virtually every day and every night; and it is exhausting.

Under Florida’s Long-term Care managed care program, the plan’s case managers play an absolutely essential role in ensuring that people like Hortense are getting the services they need in order to stay safe at home and not in a nursing home. This means making sure that those responsible for enrollees who are no longer competent, and their PDO caregivers like Thelma, are actually aware of the level of services that have been approved and are able to access those services. The case manager's duties, which are extensive and specific, are spelled out in the contract between the LTC plan and Florida's Agency for Health Care Administration (AHCA). But unbeknownst to Thelma, in August 2023, the LTC plan had increased her PDO hours from 36 hours/week to the full 40 hours/week she was eligible for. Unfortunately, while the case manager meets with Thelma and Hortense every 3 months (and of course can call), he never mentioned the increase in any of those meetings. When the plan decreased her hours in the past, they always sent a notice in the mail, but Thelma never received a written notice about the increase in hours and the case manager NEVER discussed it with her.

“Why didn't my case manager tell me my hours had been increased? Or why didn’t the plan mail me a notice stating that the caregiving hours had been increased, like they do when my hours or my mum’s other services have been decreased? I only learned on my own, when I recently received a notice that included my Mum's care plan .”