{"id":519,"date":"2026-05-14T12:04:52","date_gmt":"2026-05-14T12:04:52","guid":{"rendered":"https:\/\/tampamovingjournal.com\/?p=519"},"modified":"2026-05-14T12:04:52","modified_gmt":"2026-05-14T12:04:52","slug":"advocates-question-floridas-efforts-to-reduce-disability-care-waitlist","status":"publish","type":"post","link":"https:\/\/tampamovingjournal.com\/?p=519","title":{"rendered":"Advocates question Florida\u2019s efforts to reduce disability care waitlist"},"content":{"rendered":"

TAMPA, Fla.<\/strong> – <\/span>Families navigating severe developmental disabilities in Florida say the years-long delay for home-based services exposes a much deeper breakdown in state government.<\/p>

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Well-intentioned legislative efforts have repeatedly resulted in negative unintended consequences.\u00a0<\/p>

For example, the legislature recently created a program to train and pay parents to be caregivers for their own disabled children. However, the program paid just enough income to disqualify many families from Medicaid, severing their access to crucial medical benefits. A “glitch” bill is addressing that issue.\u00a0<\/p>

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Similarly, the state recently opened handicapped parking spots to pregnant women. Some requiring wheelchair-accessible vans say it has become increasingly difficult to find the space required to deploy their ramps.<\/p>

The backstory:<\/p>

Years ago, as public pressure mounted on lawmakers to address the massive backlog of residents waiting for care, the legislature passed a bill to stop calling it a waitlist. State records have officially purged the term, replacing it with the phrase “pre-enrollment.” Advocates and families note the linguistic shift does not provide care to those stranded in the backlog.<\/p>

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Yasmina Halim\u2019s daughter, Lily, developed Tay-Sachs, a fatal neurological disease that stripped her of the ability to walk, talk, eat and drink. Given a life expectancy of just two to three years, Lily qualified for home-based support. The state of Florida placed the terminally ill child on a 10-year waitlist.<\/p>

Physically and financially drained, Halim made the agonizing decision to put Lily in an institution, only to find no facility would accept her. It took three years of waiting before the state finally approved cheaper, home-based services for Lily.<\/p>

Private managed care<\/h2>

With the state system gridlocked, Florida offers private managed care as an alternative for medical needs. However, some families fear the managed care alternative is not equipped to meet the needs of individuals with lifelong, severe disabilities, based on their experiences with how it provides medical services.\u00a0<\/p>

Daina Rogers relies on private managed medical care for her son Mayik, who is nonverbal, incontinent, suffers severe medication-resistant seizures and exhibits severe behavioral disorders. Medicaid’s managed care program cut all of Mayik\u2019s nursing support.<\/p>

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Though Rogers won an appeal with the help of Florida State University professors, approvals only last for 60 days, leaving her in constant danger of losing life-saving care for Mayik.<\/p>

Meanwhile, Mayik remains on the state waitlist for behavioral support. The state denied his emergency crisis claim, arguing that community services like extended care centers exist \u2014 though Rogers explored these options to no avail.\u00a0<\/p>

Dig deeper:<\/p>

The APD is actively reducing its waitlist numbers, but the non-profit advocacy group Disability Rights Florida is questioning the methodology. The state recently mailed over 5,000 letters offering home-based services, but Disability Rights Florida said an unknown number went to incorrect addresses. Heading into 2026, the response rate was 19%.<\/p>

According to Caitlyn Clibbon of Disability Rights Florida, families who do not respond to these letters can be purged from the list. Furthermore, even the minority of families who successfully receive and accept the state’s offer are hitting another wall: an extreme shortage of support coordinators. Finding a coordinator with the capacity to take a new case can take months, delaying care even further.<\/p>

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The reality of bureaucratic purges<\/h2>

“I think folks haven’t realized yet that they’ve been removed from that waitlist. These letters are not making it where they’re intended to go,” Clibbon said.<\/p>

Changing the terminology<\/h2>

“It\u2019s not pre-enrollment, it is a waitlist!” JJ Holmes, an advocate who utilizes a wheelchair and a voice synthesizer, said.<\/p>

The caregiver pay trap<\/h2>

“It’s like a Catch-22. You’re going to go through all the training; you’re going to get one paycheck, and then you don’t have Medicaid anymore. It doesn’t even make sense,” Kelly Olive said.<\/p>

The exhaustion of fighting the system<\/h2>

“I just sat there in silence on the floor, just rocking back and forth, silently crying. It’s not like I’m not trying to get services… there just isn’t any!” Rogers said.<\/p>

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By the numbers:<\/p>