State keeps 22,500 families with disabilities on waiting list

To hear the state’s leading politicians tell it, Florida government is firing on all cylinders. The budget has seen billions of surplus dollars. And House Speaker Paul Renner declared that he and Gov. Ron DeSantis had the “session of the century” this year.

But that may depend on who you ask. Because, despite spending record amounts of money, Renner and his fellow lawmakers decided once again not to fully fund the state’s program for Floridians with profound disabilities.

As a result, more than 22,500 families dealing with everything from cerebral palsy and spina bifida to autism and intellectual disabilities remain on a waitlist for services to which the state says they’re entitled.

And not just any waitlist. Nearly half the families have been waiting for a decade to access services such as therapy, grooming and transportation. Some children die before receiving assistance.

Seminole County resident JJ Holmes is 19 years old and has been waiting since he was 3.

His mother, Alison, said Wednesday that JJ may get help in about a year and a half when he turns 21. That’s because, as long as lawmakers refuse to fully fund the program, people like JJ, who can’t walk or even feed himself, are not considered a priority until they’re an adult and potentially on their own.

Holmes said the state has basically told her that, until JJ’s 21, he can’t get help “unless he’s homeless or I die.”

Such is life for Florida’s specialneeds families after the session of the century.

It wasn’t always like this in Florida. Back when Jeb Bush was governor, the state fully funded the Medicaid waiver program that provides respite care and other services to these often financially drained families.

Back then, families had sued Florida for failing to meet its obligations. Bush knew they were right. So, before the courts ruled against the state, he beefed up funding to make sure everyone was served. Doing so, of course, didn’t break the bank. In fact, Bush would later say that the full funding “elevated the lives of all Floridians.”

But the GOP lawmakers who have controlled funding in more recent years haven’t felt the same way even when there was money galore. One year, then-Gov. Rick Scott had so much extra money in his budget that he launched a statewide tour, asking people for ideas on how he should spend it all. Well, maybe a lot of the people he asked were chamber-of-commerce lobbyists. Because Scott decided to use much of that surplus on corporate tax breaks … for businesses that already enjoyed some of the lowest business-tax rates in America. The waiting list remained full.

In recent years, lawmakers used surpluses to spend more on Visit Florida, private-school vouchers — almost anything, it seemed, except fully funding the state’s program for disabled families.

If only the kids in wheelchairs and adults who require feeding tubes were better lobbyists.

Most politicians know this looks bad. So after almost every budget cycle, they boast about having served another few hundred or few thousand families. What they don’t say is that, for every 500 families moved off the list, another 600 or so get in line.

In 2015, there were 21,000 families waiting for help. As of this past legislative session, there were 22,535. Yes, after nearly a decade’s worth of politicians patting themselves on the back, the backlog had grown.

Frankly, after writing about this issue for nearly a decade,

I’ve reached the conclusion that many politicians — and frankly, many people — simply don’t care about this issue. It doesn’t affect them personally. So it’s simply not a priority.

At this point, the only way this state might do right by this vulnerable population would be for families to again sue the state and this time see the lawsuit through to a verdict or court-ordered conclusion. Unfortunately, lawsuits like that take a lot of money. And again, families with disabilities aren’t often flush with extra cash.

In potentially encouraging news, Florida’s next House Speaker, Daniel Perez, says he’s going to do things differently. In a recent speech, Perez mentioned that his brother had a severe developmental disability and that he watched his mother struggle to access programs meant to help him.

I guess if that’s what it takes — for a politician in power to be personally impacted — that will be good news for the families that have been waiting for years for someone to care.

But the families will also be watching to see how they get served, if they get served at all. Because legislators recently set up a pilot program to allow a few hundred families in South Florida and Tampa Bay to get off the waiting list if they agree to do so via a managed-care program where companies will guide families through the process in exchange for a cut of the money.

Managed-care programs can work well. But they also lead to absolute horror stories when government contractors win bids and then cut corners on care so they can pocket more profits.

Holmes said most of the families she has heard from — like the one whose son didn’t get moved off the waitlist until he fell out of a second-story window and was then deemed a priority — don’t want to be viewed as targets for profiteering. They just want to be served the way state regulations already say they should be. The way Florida used to serve its residents 20-some years ago.

In the meantime, JJ will continue to wait. He has started attending classes at Seminole State College and is studying political science. His goal is to one day become an advocate for marginalized populations. You go, JJ.

If you’d like to contact Florida legislators or the governor about this or any other issue, you can find more info at leg.state.fl.us and flgov.com/contact-governor.