The backlog for disability care and Medicaid expansion: Where Florida's candidates for governor stand

TAMPA, Fla. - Across Florida, thousands of vulnerable residents legally qualify to receive home-based services through the state's Medicaid iBudget waiver but are instead stuck on a waitlist. For families, the backlog can carry a devastating hidden cost.

Families on the State Waitlist

Local perspective:

Across Florida, thousands of vulnerable residents legally qualify to receive home-based services through the state's Medicaid iBudget waiver but are instead stuck on a waitlist. For families, the backlog can carry a devastating hidden cost.

Lily Halim developed a rare, fatal neurological disease, losing her ability to walk, talk, eat, and drink. Despite qualifying for support, she was placed on the waitlist and was only given care after her mother opted to put her in an institution, and they could not find an institution to accept her. Meanwhile, Nataisha Clay cares for her paralyzed daughter London around the clock. The stress led Nataisha to suffer a stroke, lose her job, and face eviction. After finding temporary lodging in Fort Myers, she drained her temporary assistance driving London 320 miles a day to school in Tampa.

Another patient, JJ Holmes, waited 17 years for state assistance. While lawmakers passed a bill to help JJ and a fraction of others get home-based support after his family actively lobbied the Capitol, thousands of others were left waiting.

What they're saying:

"A ten-year waitlist," said Lily's mother, Yasmina Halim. "And sometimes it's even longer for a terminally ill child."

"It’s tough. It’s really tough," said Nataisha Clay. "No one should ever experience this. No one."

"It’s getting him out of bed, feeding him, showering him, shaving him, everything," said Alison Holmes, JJ's mother. "Feeding him can take an hour."

Florida’s Unspent Billions

The backstory:

The waitlist problem is not new, and it has been solved before. Former Governor Jeb Bush previously cleared the backlog by more than tripling funding for home-based services. However, during the administrations of Charlie Crist and Rick Scott, the Great Recession shrank state revenues, and the waitlist returned. When the economy recovered under Scott and current Governor Ron DeSantis, the state accumulated unprecedented financial reserves, yet the waitlist remained intact.

By the numbers:

• $456 million: The lump sum of unspent funds currently sitting with the Agency for Persons with Disabilities (APD).
• $1.06 billion: The total unspent APD funds when federal matching dollars are included.
• $100,000 vs. $60,000: The estimated yearly cost of putting a patient in a state institution versus providing the home-based care they are waiting for, according to former Arc of Florida Director Alan Abramowitz.

What they're saying:

"Children die on the waitlist. It is absurd," State Rep. Kelly Skidmore (D-Boca Raton) said. "The money is sitting there. A billion dollars unspent on people who need care. It's unfathomable."

How the Candidates Would Fix It

What we know:

The next governor will inherit this backlog. Democrat David Jolly has stated he would use executive action to knock down the waitlist and called for an increase in funding, citing the Jeb Bush era as a benchmark. Jolly opposes forcing individuals with developmental disabilities from the iBudget waiver into managed care, arguing private vendors use it to extract costs and reduce benefits.

"There should not have been a waiting list for you," Jolly told Yasmina Halim during a recent coalition meeting. "Community and home-based care represents a civil and constitutional right for an individual with disabilities."

What we don't know

We are still waiting to hear Republican Byron Donalds' plans for the waitlist. Fox 13 submitted detailed questions to the Donalds campaign asking how he would handle the funding of the iBudget waiver, and specifically if he supports moving all Floridians with developmental disabilities to a managed-care model. The campaign has not yet responded.

We are also waiting to hear Donalds' stance on the landmark Olmstead ruling, which protects the right to home-based care. Additionally, Donalds recently stated he was "not overly familiar" with Section 504 of the Rehab Act—a federal law prohibiting disability discrimination—but promised to research it to ensure disabled Floridians have full access to the state. We will update this story when his campaign responds.

The Fight Over Medicaid Expansion

The backstory:

In 2012, the U.S. Supreme Court gave states the choice to expand Medicaid under the Affordable Care Act. Expanding it would cover hundreds of thousands of low-income adults in Florida, with the federal government covering 90% of the costs. Governor Rick Scott initially blocked it, later briefly indicating supported for it, and then helped kill a Republican Senate plan to expand it. Governor DeSantis has since opposed expansion.

The other side:

Supporters of expansion argue it improves public health, drastically reduces uncompensated-care costs for hospitals, and brings billions in federal funding into the state. Opponents argue that expanding Medicaid increases dependence on government-funded healthcare, expands state obligations, and exposes Florida to immense financial risk if Congress ever reduces its federal funding commitment.

What they're saying

"In Florida, we are not going to expand Medicaid," said Byron Donalds. "Medicaid expansion under Obamacare will create a major fiscal burden for the state of Florida that we're not going to be able to pay for long term."

David Jolly argued the opposite: "When we fail to deliver primary care to more people, we end up paying for emergent care... If we expand access to healthcare, we not only improve outcomes, but we reduce costs and no longer are we the 49th state in avoidable hospital costs."

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