Last month, J.J. Holmes celebrated his 20th birthday and says the best gift he could get is "for Florida to expand Medicaid."
Holmes has cerebral palsy. He speaks through an iPad by typing out messages with his nose. His mom, Alison Holmes, is his full-time caregiver. She assists him with everything from eating and drinking to pulling the covers up at night when he gets cold. J.J. worries about her. She's almost 60 and she's getting aches and pains.
"Every day I try as hard as I can to make it easier when she lifts me, but I know I am hurting her and I don't know what to do," J.J. says.
Florida is one of 10 states that has not expanded Medicaid, a state and federally-funded insurance for low-income people under the Affordable Care Act. J.J. has insurance because of his disability, but his mom doesn't. She's one of the more than one million people nationwide who advocates say are stuck in a health insurance coverage gap.
"I wish people could see how hard her life is and see how much pain she's in. If they did, they'd understand how important this is."
Alison has too much income to qualify for Medicaid in Florida, but too little to get subsidies from the health insurance marketplace. Now, advocates are pushing a proposed state constitutional amendment that would expand Medicaid eligibility and give people like Alison coverage.
The road is long for organizers in Florida, but in every state where Medicaid expansion has gotten on the ballot, it's passed. Nearly a million petition signatures are needed to get it on the ballot in 2026, and then 60% of voters would need to approve it.
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Alison says she stays awake at night worrying about what would happen to J.J. if she got sick and couldn't afford to go to the doctor.
"My biggest fear is dying from something that would be survivable if I was just able to get typical annual checkups someone at my age gets," Alison says.
J.J. is known for his work as an activist. He advocates for people with disabilities and spoke out during the coronavirus pandemic about the state's efforts to bar schools from requiring students to wear masks.
"He loves his life," Alison says. "He wants to be constantly going, constantly out there—meeting people, going places."
Alison says right now, she's the reason J.J. can live that life. She gives him the ability to live in the community. If she were not able to care for him, she worries he would be forced to live in a state-run institution whose residents are typically seniors with dementia or Alzheimer's disease. It's not the life she wants for him, turning every medical decision she and her husband make into a calculation.
"You're constantly sort of weighing the odds," Alison says. "Is it bad enough for me to go and see a doctor and spend all that money, which then means we don't have money for other things?"
Alison is a U.S. citizen who moved to the United States in 2003 from Scotland where she could get free medical care. She remembers looking into it during a health scare and realizing that if the problem didn't sort itself out, it would cost her less money to fly back to Britain for care than to go to a doctor in Florida.
The Affordable Care Act is 'broken'
In Florida, most parents in a family of three need an income of less than $8,000 to get Medicaid. But to qualify for subsidies from the insurance marketplace, their annual income must be at least $25,820.
"If you don't fit in those criteria, there's nothing available for you," says Jake Flaherty, campaign director for Florida Decides Healthcare, the group pushing the proposed amendment.
Flaherty says the aim of the Affordable Care Act — also known as Obamacare — which passed in 2010, was to set up a health insurance exchange where people who didn't have insurance could purchase it. The original plan also expanded Medicaid eligibility to include more people, but states pushed back on that and the U.S. Supreme Court ruled states could decide whether to expand Medicaid.
Flaherty says for many states, that decision became political.
Flaherty says the ACA was broken by that Supreme Court decision. "It doesn't work the way it was intended to."
Florida's on-again, off-again relationship with Medicaid
Since then, Flaherty says there's been a trickle of states adopting the expansion. Last year, North Carolina's legislature voted to expand Medicaid. The year before, voters in South Dakota passed a citizen initiative expanding Medicaid through a constitutional amendment.
In Florida, lawmakers have been debating the issue for a decade and compromise has seemed possible at some points. Following the Supreme Court decision in 2012, then-Gov. Rick Scott said Florida would opt out of the expansion. A year later, in 2013, Scott seemed to reverse course and appeared ready to embrace an expansion. Then in 2015, lawmakers ended the legislative session early because of disagreement over a possible plan to expand.
This year, "Medicaid expansion is not going to happen in Florida," said Senate President Kathleen Passidomo during her opening remarks on the first day of the legislative session.
Passidomo calls Medicaid a "false government promise," saying insurance isn't the problem, it's access to doctors in the state. "If you have insurance, you don't have insurance, you have Medicare, Medicaid—if we don't have enough people to see you, it's not going to make a difference," Passidomo says.
Alison Holmes believes it would make a difference for her. And she says after years of waiting for lawmakers to take action, it's time to let the voters decide.
"You feel like you're walking on a tightrope with no safety net underneath," Alison says, "and it wouldn't take much to put that safety net for me and for all the other caregivers in Florida and for everybody else who has been left in this limbo."
Estimates for the cost to expand Medicaid in Florida differ. Some say it's a major cost, others, a significant savings. The last time the state's economists were asked to weigh in on the issue, they said it could not be "reasonably determined."
The group Florida Decides Healthcare launched a similar effort back in 2019, but put the effort on hold because of changes to the initiative process and concerns about how the coronavirus pandemic would impact the group's ability to collect enough petition signatures.
This time around, Flaherty says he's feeling hopeful. He says two ballot initiatives making it onto the ballot in Florida this year prove it's possible and that his group's polling shows strong support in Florida for Medicaid expansion.
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