Florida failing families with special needs

Three years ago, I shared the story of 4-year-old Avery Creese while writing about one of Florida’s great shames — the state’s refusal to provide therapy and respite care for many families with profoundly disabled children.

Avery’s family was one of many who qualified to receive Medicaid waivers to help pay for the care they need. But the state simply refused to meet its obligations.

As a result, there was a waiting list of 21,000 people — with an average wait of six years.

Imagine learning that your 1-year-old daughter had cerebral palsy and not getting the therapy she needed until she was 7.

And six years was just the average. Some families waited a decade or more. Some kids died before being served.

This is not the way a decent society functions. It’s not the way

Florida has always functioned. As recently as Jeb Bush’s administration, everyone who qualified for help got it. Everyone. There was no wait list.

But by 2015, the wait list was up to 21,000. And to show readers that these families were more than just numbers, I shared Avery’s story.

The little Orlando girl suffered from Phelan-McDermid syndrome, a rare autism-related condition that required constant care, since Avery couldn’t even feed herself.

Her father, Greg, had a good job and insurance. But caring for his daughter — which involved everything from spending $12,000 on a special-needs bed with high-wooden walls to co-pays for repeat visits to the emergency room — had financially destroyed him.

And he wasn’t left with enough to pay for the therapy he knew his daughter needed — therapy that the Medicaid waiver would have provided.

After I wrote that column, there was a rush of support. Everyone wanted to help. Lawmakers vowed to find a solution.

And they did. Avery, now 7, got her waiver. And her family’s life is now better.

But here’s what you don’t know: Lawmakers didn’t help Avery by seriously whittling down the wait list. Instead, they did so by slipping a clause into state law that said kids with Phelan-McDermid Syndrome moved to the front of the line.

It was a solution for less than 0.3 percent of the families on the list — 55 to be precise.

So last month, I checked to see how many families are on the wait list — on that list that so many people found atrocious at 21,000. The answer: 21,256. Greg Creese is profoundly grateful his daughter is getting the care she needs, but says: “I feel terrible for the families who are still waiting.”

So do I. But I feel more than terrible. I feel mad.

Because lawmakers skimped on providing services to the disabled — even as they passed the highestspending budget in Florida’s history last month.

State officials stress that not