The perils of Florida’s refusal to expand Medicaid 

Charlene Dill is one of an estimated 2,000 people who expected to face dire health issues due to lack of access to care

Charlene Dill didn’t have to die.

On March 21, Dill was supposed to bring her three children over to the South Orlando home of her best friend, Kathleen Voss Woolrich. The two had cultivated a close friendship since 2008; they shared all the resources that they had, from debit-card PINs to transportation to baby-sitting and house keys. They helped one another out, forming a safety net where there wasn’t one already. They “hustled,” as Woolrich describes it, picking up short-term work, going out to any event they could get free tickets to, living the high life on the low-down, cleaning houses for friends to afford tampons and shampoo. They were the working poor, and they existed in the shadows of the economic recovery that has yet to reach many average people.

So on March 21, when Dill never showed up with her three kids (who often came over to play with her 9-year-old daughter, Zahra), Woolrich was surprised she didn’t even get a phone call from Dill. She shot her a text message – something along the lines of “Thanks for ditching me, LOL” – not knowing what had actually happened. Dill, who was estranged from her husband and raising three children aged 3, 7 and 9 by herself, had picked up yet another odd job. She was selling vacuums on a commission basis for Rainbow Vacuums. On that day, in order to make enough money to survive, she made two last-minute appointments. At one of those appointments, in Kissimmee, she collapsed and died on a stranger’s floor.

Dill’s death was not unpredictable, nor was it unpreventable. She had a documented heart condition for which she took medication. But she also happened to be one of the people who fall within the gap created by the 2012 U.S. Supreme Court ruling that allowed states to opt out of Medicaid expansion, which was a key part of the Affordable Care Act’s intention to make health care available to everyone. In the ensuing two years, 23 states have refused to expand Medicaid, including Florida, which rejected $51 billion from the federal government over the period of a decade to overhaul its Medicaid program to include people like Dill and Woolrich – people who work, but do not make enough money to qualify for the Affordable Care Act’s subsidies. They, like many, are victims of a political war – one that puts the lives and health of up to 17,000 U.S. residents and 2,000 Floridians annually in jeopardy, all in the name of rebelling against President Barack Obama’s health care plan.

Woolrich has spent the better part of 2014 canvassing for the Service Employees International Union and for Planned Parenthood in an effort to educate people about Medicaid expansion and to enroll residents of poor neighborhoods into the Affordable Care Act’s medical-care exchanges. During the course of her work, she saw women with tumors that had yet to be treated, many chronic conditions affecting people living in the gap, and sometimes she found herself having to be the bearer of bad news. March 21 was her day off. She was looking forward to getting away from the politics. “I was off. Spring break was going to start for me and her kids,” she says.

Woolrich was aware that Dill was trying to get refills on her medication but not that she had become ill. Dill had been bumped off Medicaid because she was making too much money – an estimated $9,000 a year – and had yet to be able to afford a divorce, which might have bettered her chances. A message to Woolrich from a distant relative confirmed that Dill would not be showing up that Friday because she had passed away, but even that might not have happened if Dill’s cell phone hadn’t lit up while she lay prostrate on that Kissimmee floor. The people to whom Dill was peddling vacuums noticed the phone and called her relatives, says Woolrich, telling them, “There’s a girl lying on our floor. We don’t know who she is.”

These are the people in the coverage gap – the unknowns, the single mothers, the not-quite-retired – the unnamed 750,000 Floridians who are suffering while legislators in Tallahassee refuse to address the issue in this year’s legislative session, which ends on May 2. The working poor – who used to be the middle class – are on a crash course with disaster for no logical reason. Charlene Dill, at the age of 32, didn’t have to die.

On April 1, President Obama held a press conference to announce the remarkable success of the Affordable Care Act, despite early indications that the website hosting the federal health care exchange was going to be an obstacle to signing up. Seven million people enrolled in the program, surpassing the expectations of the Congressional Budget Office – and those of most Republicans who oppose the program. In reality, more than double that number have been positively affected by the ACA’s enactment. Those who were automatically enrolled in Medicaid in the states that accepted the federal government’s funding for the program – 100 percent for the first three years, then 90 percent for the fourth year – are not even included in that number. Florida, it should be noted, was second in the number of enrollees through March 31, even without the Medicaid expansion.

In the Sunshine State, 440,000 people signed up on the health care exchange, while 125,000 were judged to be eligible for Medicaid. Florida, with its retirees and low-wage workers, is on the demand side of health care.

“We are No. 2, plus we have a federal exchange,” SEIU state council president Monica Russo says. “I find that quite a statement. Floridians need health care. I think [Republicans] can campaign all they want against health care, but at the end of the day, what are they going to do? Rip health care out of their hands?”

The ACA issue has frustrated the Florida Legislature and governor’s office since the inception of the plan. Attorney General Pam Bondi – following in the footsteps of her predecessor Bill McCollum – actively litigated against the constitutionality of a health care “mandate” along with other Republican states, before those complaints were silenced by that 2012 Supreme Court ruling. Gov. Rick Scott came out in advance of last year’s legislative session with tepid support for accepting Medicaid expansion in light of his mother’s death and the fact that, as he said, nobody should be without health care.

Senate President Don Gaetz, R-Niceville, attempted to support a compromise within his party to accept the federal funds of $51 billion via an ancillary system, but the more arch arguments in the State House – via House Speaker Will Weatherford, R-Wesley Chapel – shut any compromise down.

Now the governor refuses to even address the issue. It is an election year, after all.

Republicans have indicated that they do not intend to address Medicaid expansion during this year’s session, and no hearings have been scheduled, but that hasn’t stopped advocates from trying to press the issue, if only in remembrance of Dill. Just one week after her death, Woolrich traveled to Tallahassee with a coalition of groups – including SEIU, teachers and health care workers – to present their case in the Capitol rotunda.

“She worked really hard to provide for her kids,” Woolrich said from the lectern, surrounded by supporters holding up Dill’s picture. “She did baby-sitting, cleaned houses, collected cans for recycling and took them to recycling centers and got money for it, and sold vacuum cleaners. Whatever it took. But Charlene had health problems. She had pulmonary stenosis, sepsis from tooth decay, fibromyalgia and a lot of other health issues from these conditions. When she separated from her husband in 2009, that was last time she had reliable health insurance.”

Woolrich actually walked Dill through the process of the ACA online calculator and they found that she was in the gap. As recently as last October, Woolrich used online crowd-funding sources to help Dill get the medication she needed. Her heart condition had complicated all three of her pregnancies, and sometimes the hustle to survive wasn’t enough to make life bearable.

“People like Charlene are dying,” Russo says. “The thing is, the resources are there to pay for it. That’s what’s so mind-boggling about this situation. The money is there; it’s on the table.”

As a result, House Democrats – including local state Rep. Joe Saunders, D-Orlando – are holding the expansion as a trump card in advancing this year’s $75 billion budget proposal. On April 3, Saunders released a statement justifying his no vote on the budget.

“Millions of dollars in revenue were left on the table that could have been generated by closing the online sales-tax loophole which has overwhelming support from the business community, both parties and, maybe most importantly, for a second year in a row we’ve left billions of dollars out which would give over a million people access to health care and create 60,000 jobs,” he said. “This budget does important things for many people, but it is a plan that unnecessarily leaves too many people out.”

And while there have been reports of House Minority Leader Perry Thurston Jr., D-Fort Lauderdale, pressuring Democrats to fall in a similar line, the budget has nonetheless received measurable bipartisan support, mostly because of pork and election optics. Despite appearances – like that cited by SEIU’s Russo, who praised the minority leader’s hard-line stance, saying, “That’s leadership. ‘You’re not going to have our votes’” – Thurston’s mandate doesn’t amount to much.

“I think there will probably be members in our caucus who think that this budget does more and that they have some basis for voting for it,” Thurston said last week, according to the News Service of Florida.

The political pressure for Medicaid expansion reaches far higher than the mahogany desks of Tallahassee, though. U.S. Senator Bill Nelson, D-Florida, has been actively pursuing a compromise for Medicaid expansion in Florida behind the scenes in Tallahassee.

“An idea is to involve public hospitals, which serve many of the state’s low-income or indigent patients, in providing some of their revenue in place of state funding for Medicaid expansion,” he wrote in a statement. “Tragically, the failure to expand Medicaid means that some people will die earlier due to a lack of proper medical treatment,” he said via email in response to questions for this story.

Congressman Alan Grayson, who received significant criticism for his “Die Quickly” placard, which he released in reaction to Republican obstruction of the ACA, replied more specifically to the case.

“Charlene’s sad and unnecessary death illustrates what I have said all along: For the 1 million of Floridians who cannot afford health care coverage, the Republican health care plan is simply this: ‘Don’t get sick,’” Grayson says. “If you do get sick, and if you cannot afford coverage, the GOP has nothing for you but prayer. The Republicans have no answers, no alternatives, no ideas, no safety nets, no sympathy, no empathy and no compassion. Just these three words: ‘Don’t get sick.’ The GOP’s refusal to expand Medicaid, at no cost to Florida, has put the GOP’s appalling disregard for human life on full display. As far as they’re concerned, if you’re not a fetus, you’re on your own. The Republicans would literally rather watch people like Charlene die than give them the care that they need to stay healthy and alive. It’s disgusting and sadistic.”

Grayson entered Woolrich’s account of Dill’s death – which she published online – into the Congressional Record, even having a representative deliver the document at Dill’s funeral, which was, again, crowd-funded by Woolrich on GoFundMe.com. Woolrich raised $4,000 in less than a week to pay for the funeral.

“I memorialized Charlene’s life and death in the Congressional Record, because the Republicans want to pretend that none of this is happening. That Charlene didn’t die as a result of their callous neglect – that no Floridians will die as a result of their willful refusal to expand Medicaid at no cost,” Grayson says. “But I’m not going to let them forget. I’m not going to let them pretend. This is not a game; this is very real. This is life and death.”

The politics of the issue, and of Dill’s death, don’t necessarily bleed into the practicalities of Medicaid.

“As you know, and just to clarify, as an executive state agency, we administer directives from the governor’s office,” regional managing director for the Department of Children and Families for Central Florida Bill D’Aiuto says. “I think, as you know, the Legislature decided not to expand Medicaid.”

DCF actually handles the eligibility side of the Medicaid conundrum in Florida, while the Agency for Health Care Administration handles the distribution of benefits. D’Aiuto, in typical administrative fashion, has no real opinion on the prospect of expanding the Medicaid plan and can only speculate as to whether the state office discussed what costs that might bring to the agency (currently suffering in public relations for various foster care travesties). But the Medicaid eligibility issue is difficult to pin down, beyond the fact that, at least currently, only mothers with kids are welcome into the system.

According to the DCF website, parents are only eligible if their income is less than or equal to 19 percent of the Federal Poverty Level. The Federal Poverty Level for a household of four in 2014 is $23,850. Charlene Dill would have missed that mark if she made more than $4,531.50. Medicaid expansion would have raised that percentage of FPL to 138 percent, or $32,913, and would also have included non-parents in a household of just one that made less than $16,104.

Coincidentally, Kathleen Voss Woolrich found out she lost her Medicaid benefits on April 2 after driving all the way from Conway to Kissimmee to see a doctor that would accept Medicaid – again, on a day off from canvassing for the ACA. She was bumped into the “Share of Cost” program via DCF.

The program operates with a deductible of sorts – you are given a monthly share-of-cost dollar figure that’s tabulated based on your income. If your medical needs for the month meet or exceed that figure, Medicaid then kicks in and pays the bill. If not, you pay your own bills. From the website: “Your share of cost is $800. You go to the hospital on May 10 and send us the bill for $1,000. You have met the share of cost and are Medicaid eligible from May 10 through May 31. Medicaid will pay the $1,000 medical bill. This is only an example.”

D’Aiuto gives a similar example and says that there is no reimbursement should you accidentally pay your bill. And in order for Medicaid benefits to kick in, you have to spend a lot of money (or at least owe a lot of money) before you have any coverage at all. Woolrich says her doctor – who charged her for her visit and gave her the required prescriptions for the autoimmune disorder for which she is often hospitalized; prescriptions she couldn’t afford to fill until she met her $491 share of cost – asked, “Why don’t you just go to the emergency room?”

Which is exactly why people like the SEIU’s Monica Russo, along with most medical-care associations and interests who are busy covering the unpaid hospital costs of the indigent and poor, are adamant about pursuing expansion for the Medicaid program. Health and Human Services Secretary Kathleen Sebelius has made it clear to the Legislature and the governor that there is still time to opt in, should they be so compelled. And, in an election year, they just might.

“Going into election season, basically we have the spirit and the memory and the mantra of Charlene Dill. We need to make sure that there are no more Charlene Dills that are victims of this system,” Russo says. “That’s our mandate. Charlene Dill goes on. Make sure that her legacy is alive.”

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