Scott Maxwell: Disabled families in Florida fear cuts -- for good reason

Jan. 22--Few people are more vulnerable than profoundly disabled children.

Deliver all the "Pull yourself up by the bootstraps" lectures you want. If a child needs a feeding tube for sustenance and a neck brace to hold up her head, that child deserves society's help.

So does the 60-year-old with autism or cerebral palsy whose aging parents are no longer able to provide round-the-clock care.

Florida, however, doesn't do right by this vulnerable population.

At last count, more than 21,000 families are on the waiting list for Medicaid waivers that would provide them with respite care, physical therapy and other services.

These families meet the state's guidelines to qualify for help. They just don't receive it. The average wait is around seven years.

Some children die before getting help.

I share all that with you as prologue to understand the fear these families have, now that Florida legislators have vowed to "reform" the system.

I agree the system needs reform -- especially if the goal, as lawmakers claim, is to serve more people.

But usually, when Florida when legislators vow "reform," it means citizens are about to get hosed. (Just recall insurance "reform" ... which left many of you without sinkhole coverage.)

I agree changes are needed. But first, let's acknowledge what this system really needs is proper funding -- plain and simple.

Spin things any way you want. As long as legislators give corporations $500 million in tax cuts -- and only a $50 million boost to the state's Agency for Persons with Disabilities -- Florida will continue having problems.

So with legislators vowing "reform" instead of funding, families are understandably afraid.

"The fear is that there's going to be a lot of disruption in services," said Valerie Breen, the executive director of the Florida Developmental Disabilities Council.

In the past, lawmakers have given these families more lip service than attention.

In his budget draft, Gov. Ron DeSantis proposed a 4% increase for the Agency for Persons with Disabilities -- even though the agency's waiting list has a population larger than the of the city of Maitland.

Legislators say they're concerned about a "deficit" in the program.

I'm concerned by deficits, too. (Much more than most of Washington.) But let's be clear: The entire program is basically a deficit. Providing care for special-needs families is a government service -- much like running schools. It's not supposed to make money or run like a business. Why? Because there's no business that can turn a profit by providing free therapy to a child who can't lift her own head.

While people legitimately debate ideas like free college for all, most of us agree society has an obligation to care for its most vulnerable citizens.

But Florida hasn't adequately done so ... except when forced to.

More than two decades ago, special-needs families sued the state over the waiting list, saying Florida was denying them services to which they were entitled. And they won.

As a result, under Gov. Jeb Bush, the state provided services to every qualified family. There was no waiting list.

And guess what? The state's budget didn't implode. It was fine, and the state's economy continued growing at warp speed while Bush declared: "We have a responsibility here at the state level to provide these services."

But now, with no court order forcing them, current lawmakers feel no such obligation -- in part because the disabled don't have a deep-pocketed lobbying corps. Few donors are willing to pay $25,000 for a round of golf or private dining time with lawmakers ... to discuss Phelan-McDermid Syndrome.

So the disabled community remains an afterthought. Maybe it's time for another lawsuit.

Sen. Aaron Bean, R-Fernandina Beach, says he wants to do better and is leading the reform effort.

Bean has talked about asking the state to competitively bid parts of the program and setting provider rates. Neither of those things is necessarily a bad idea. In fact, competitively bidding services could help drive costs down and allow the state to serve more people.

But only if it's done right -- with a goal of providing solid services to a defenseless population. And families aren't convinced that will be the end result. Instead, they fear it'll mean fewer services and fewer options.

Breen, of the Disabilities Council, said she believes Bean has good motives and considers him an advocate. She also said staffers in the state's disabilities division seem to try their genuine best. But families are right to be anxious about other lawmakers, especially hard-liners in the House who often balk at any spending request that isn't made by a corporate lobbyist.

There's an opportunity for DeSantis and lawmakers to do better.

The goal should be simple: Serve everyone who qualifies. And do so as efficiently as possible. Bring down costs, sure. But make sure everyone who qualifies gets meaningful services. Everyone.

"Our goal," Breen said, "is for this program to be fully funded."

This isn't rocket science. Remember: Florida has done it in the past. Lawmakers should do so again.

smaxwell@orlandosentinel.com

___

(c)2020 The Orlando Sentinel (Orlando, Fla.)

Visit The Orlando Sentinel (Orlando, Fla.) at www.OrlandoSentinel.com

Distributed by Tribune Content Agency, LLC.