In Florida, worthy causes get funding – when lawmakers’ families are affected | Commentary

A few months ago, Gov. Ron DeSantis’ wife, Casey, revealed she had breast cancer. Six weeks later, the governor announced a $100 million commitment to funding cancer research.

Several years ago, State Rep. Scott Plakon revealed his wife was waging a painful battle with Alzheimer’s. The next year, legislators rallied to unanimously pass a bill Plakon filed in support of a memory-care center in Orange County.

Both of those causes are noble. I say so as the son of a mother who survived breast cancer and a father who will not survive his battle with frontotemporal dementia.

But I am struck by all the similarly worthy causes neglected by politicians who aren’t directly impacted — underfunded programs meant to care for the disabled, the mentally ill and the uninsured.

Take, for instance, the state program that provides services to profoundly disabled citizens. Two decades ago, Florida fully funded that program, and then-Gov. Jeb Bush said the entire state was better for doing so.

Today, the program is so underfunded that more than 22,000 families are on waiting list where many languish for more than a decade.

One of them is JJ Holmes, a Seminole County teenager who can’t walk or feed himself. He will have been waiting 15 years in February.

JJ’s mother, Alison, has watched lawmakers rally to each other’s side when their own families are impacted by trauma. So she can’t help but wonder what might happen if a Republican House speaker’s son, Senate president’s daughter or governor’s wife was as profoundly disabled as her own boy and had been waiting more than a decade for help.

“I think that waitlist would be gone in the blink of an eye,” she said.

Holmes remembers hearing Plakon, her own rep, describe the impact of his since-deceased wife’s diagnosis and pleading with fellow lawmakers to do more for Alzheimer’s, saying: “I had no idea of the impact that this disease has. It was as if a nuclear bomb had been dropped into the middle of our family.”

Holmes empathized in a painfully personal way but wondered how legislators couldn’t appreciate the similar anguish facing 22,000 families like hers.

“Apparently our nuclear bomb didn’t mushroom out quite far enough,” she said.

It’s possible some lawmakers have family members who have been denied services and are still voting to deny others as well. Holmes hasn’t met them.

I once heard that the definition of privilege is when something doesn’t strike you as a problem because it’s not a problem to you.

Well, Tallahassee seems enveloped by a bubble of privilege, because the examples go on and on.

Last year, hundreds of thousands of laid-off Floridians had their lives rocked in an ugly 1-2 punch when they first lost their jobs and then couldn’t access the unemployment benefits to which they were entitled. The reason? A trainwreck of a system that legislators knew was flawed but had refused to fix.

The problems had been documented for years. Yet Sarasota Sen. Joe Gruters didn’t get outraged until his own mother couldn’t get her unemployment check.

Then Gruters got furious. He began demanding answers and even suggesting someone “should go to jail.”

Keep in mind: Thousands of Floridians had encountered problems for years. And Gruters, the chairman of the Republican Party of Florida, had been in office since 2016.

But only after Gruter’s own mother was treated the same shoddy way as so many other Floridians did he get infuriated.

Tallahassee also discovered a newfound desire to help families with Down syndrome when Andy Gardiner, a legislator from Orlando who had an affable son with the disorder, was about to be installed as Senate president back in 2014. Lawmakers even established a scholarship to help children with a variety of special needs in Gardiner’s name back then. (Though last session, with Gardiner long gone, legislators stripped his name from it and changed the program, prompting affected families to worry about its future.)

There’s also Florida’s refusal to accept billions of federal dollars meant to provide health insurance for low-income Americans. Florida is one of only 12 states that has refused this money with GOP leadership here saying they’re OK denying coverage to 1.3 million Floridians.

Easy for them to say. Florida legislators enjoy one the most generous health care packages in America.

Part-time legislators can pay just $180 a month to insure their entire families, thanks to $15,000 subsidies you, the taxpayer, pay for each of them.

One legislator, Rep. Randy Fine, R-Palm Bay, described government-run health care plans as a “disaster” and yet signed up for his the moment he was elected.

Fine, who lists his net worth at $26 million, got his subsidized insurance. Who cares if a million or so lesser-fortunate Floridians don’t get theirs?

I’ve long associated empathy with enlightenment. I’ve also wondered if empathy can be taught.

Most of the research I found is targeted at children. But some says adults can learn empathy by cultivating curiosity, seeking diverse opinions and examining their own biases.

You can decide for yourself how much of that you witness in Tallahassee.

For Holmes, she increasingly believes this state’s leadership is beyond hope — that the only way they might ever give a flip about families such as hers would be if their own children were stricken with a debilitating disease and then told they’d need to wait a decade to get help.

“And yet,” she said, “I wouldn’t wish that on my worst enemy.”

smaxwell@orlandosentinel.com

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