Barbara Ortiz is officially retired from law enforcement but she still works as part-time reading coach and interventionist and runs a tutoring business, all while caring for her 89-year-old mother, Haydee, and untangling the demands of Florida’s long-term care bureaucracy.

Haydee suffers from advanced Alzheimer’s and a host of other age related conditions. She had to wait a year to be able to enroll in Florida’s Long-term care (LTC Waiver) program, which is funded by Medicaid and administered by managed care organizations that helps seniors and persons with disabilities stay in their own homes and avoid nursing homes. The program provides home and community-based services (HCBS), including home health aides, medications, meals and other necessities.

Unfortunately, just getting into the program isn’t a guarantee of consistent or quality homecare services.

“These days, the managed care plan is denying almost everything,” said Barbara. Services that were routinely provided are suddenly canceled, including home-delivered meals and nutritional supplements. Even basic undergarments for incontinence suddenly stopped coming. Also, hours for home health aides are cut, leaving Barbara to pick up the pieces.

“They say, ‘Oh, you’re providing the service so she doesn’t need it from us,’” said Barbara. “But it doesn’t work that way. I also have to continue working outside of caregiving so I can pay my own bills, as well as provide for my mother. I need help.”

By keeping her mother home, not only is Barbara protecting her from contracting COVID-19, she is also saving the state of Florida money, because homecare is much less expensive than skilled nursing home care. In Miami Dade County, for example, the cost of caring for someone in a nursing home is over 3.5 times the cost of providing HCBS.

Barbara is fighting the loss of services by appealing the denial, a cumbersome and confusing process where lawyers and other officials for the managed care plan come with well-honed strategies for defending their service cuts. Relatives come with heart-wrenching explanations about why desperately needed services for their loved should not be cut. They are hoping empathy and common sense will help them prevail. It often doesn’t.

Florida Health Justice Project has agreed to represent Haydee Ortiz in her current appeal regarding the termination of her home delivered meals.

“I’m so grateful for their help,” said Barbara. “But I worry about others who can’t navigate the system or get help. It’s very intimidating.”

Barbara related the story of an elderly aunt who lives alone and has no assistance. Each day, her frailty increases.

“She doesn’t know where to get help. She doesn’t eat. She doesn’t have anyone to care for her. All she has is her little house and a fixed income,” Barbara said. “What about the seniors who are not managing well on their own like my aunt? What happens to them?”

Post-Script: Florida Health Justice Project represented Haydee Ortiz in her Medicaid Fair Hearing. During the course of discovery, the managed care plan decided to reinstate her home delivered meals for a year. As a result, Haydee is able to receive the nutrition she needs without the need for a hearing.

To help caregivers like Barbara understand the program better, FHJP has developed a consumer flyer on Medicaid Home & Community Based Services (HCBS): “Know Your Rights Flyer”, a consumer HCBS information video and a more detailed “Advocate’s Guide to the Florida Long-Term Care Waiver.” Information is provided to both caretakers and their advocates on applying for the program and trouble-shooting problems.