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Orlando Sentinel: iBudget hurts both the vulnerable and taxpayers

Friday, September 27, 2013

It took 18 years for the Florida Agency for Persons with Disabilities to supply my son with the services he needs to live. For the 216 months that we waited — one of thousands on Florida’s infamous APD wait list — we yearned for the day that our son would finally receive the speech and physical therapy that someone suffering from Cri du Chat Syndrome, a rare chromosome abnormality, must have to maintain his or her quality of life.

But it turns out the day we finally received APD funding for those vital services was the first day of a long fight to keep what little services we received — a new type of waiting.

And then iBudget was created — a system that was supposed to provide funds more efficiently and effectively for those with developmental disabilities — a process that, as implemented by APD, has turned into a complex, unsustainable system that is riddled with flaws and delivered the biggest cuts we’ve ever received.

Like so many others in this system, our son will never receive enough to cover the cost of his services. Unlike other individuals, our family has been able to supplement his care over the eight years he’s been getting APD funding. Every year we’ve seen services or funding that was once deemed “medically necessary” for my son cut and explained away by APD in an effort to manage its budget.

In 2012, our son received yet another notice that his services would be cut by another $1,500. The notice was sent to the group home where he lives, but as someone with a severe mental disability, he couldn’t read the notice. It sat for three weeks, well past the window of appeal, until finally brought to my attention.

In an effort to avoid yet another cut, I filed the medical-necessity appeal anyway, and was able to have the cut reversed. This victory is something many families don’t experience with APD, and while we were lucky to have the tremendous time and energy it takes to challenge a cut in services, the victory didn’t last long.

One month later, we got our first iBudget cut — $8,000, a significant portion of our son’s services. iBudget cuts for our son’s roommates came shortly after. One of them received a $16,000 cut — nearly half the services provided.

With the one-of-a-kind environment that our son has called home for more than three years in jeopardy of falling apart due to these new cuts, we’ve embarked on our biggest challenge yet — to fight the implementation of Florida’s iBudget.

The arduous process to appeal an APD decision to cut an individual’s iBudget, itself, is a major deterrent for families to fight a reduction in services. Once we received our $8,000 iBudget cut, we filed an administrative appeal, which APD is seeking to have thrown out.

While we’ve been waiting on the outcome, APD has moved forward to implement the cut, so we filed another legal challenge to protect our son’s services. We are currently involved in several legal challenges against APD in an effort to stop our son from losing the services that sustain him.

It’s impossible to fully describe the myriad ways iBudget is negatively affecting our family and the lives of the thousands who are receiving cuts similar to, or worse, than ours. However, it’s easy to explain the effects APD’s iBudget implementation will have on Florida’s taxpayers. If APD’s broken iBudget system isn’t righted, and these cuts continue, adults with developmental disabilities will wind up in institutions, a prospect that is much more costly than the in-home or community-based services that iBudget was created to fund, not cut.

This can’t be the solution Florida’s Legislature envisioned — these invasive cuts that leave medically necessary services and quality-of-life by the wayside. After a lifetime of waiting, my son deserves better than this.

Ken LaRoe is the father of a 26-year-old with Cri du Chat, a developmental disability that results from a chromosome deficiency. His son has been receiving APD services for eight years.

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