Autism Treatment Lottery: Winning and Hoping For More

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A lottery for Autism treatment… hmmm this seems fraught with problems, and frankly I have to wonder how good (or bad) this might be.  If Utah is an above-average provider of services that the Spectrum needs, why aren’t those services more widely distributed to all health districts? Why create the clamor of a lottery? Is there such a wide disparity in covered health care costs? Conversely, if they’re not that good, why promote it in such a way?  To create that almighty ‘buzz’?  It seems very ‘Hunger Games’-ish: “May the odds be ever in your favor!”

Parents of Autistic children are desperate in nature; hopeful for improvement in many areas, often looking for that next thing that will help their children.  For many middle and lower class families, many treatments are out-of-pocket expenses, which they gladly pay, but do so knowing they may have to do without something else down the line.  They are often beaten down and cynical about some treatments, which by themselves are often a 50-50 proposition at best: hyperbaric oxygen therapy, chelation, dietary modification, etc.  The more traditional treatments such as OT/PT and Speech, useful to most, if not all, children on the Spectrum would at least give these kids reach a more-level starting point (developmentally) that much sooner.

I hope the state of Utah isn’t building up the hopes of these parents.  I hope this doesn’t create yet another divide for Special Needs parents. I hope Utah has something to tell those that don’t win anything in this lottery– the children who ‘don’t make the cut’.  Those are the ones with the most to lose. 

Conversely, I hope this state-funded pilot program is infinitely successful and is expanded to everyone who applies.  Inclusion: that’s what it’s all about, right? -Ed

UTAH PARENTS PIN AUTISM TREATMENT HOPES ON LOTTERY

Damien Cook has autism. He loves to play with water and feel the tactile sensation of the water on his hands as he is doing here with his cat “Hissy” in his backyard in Tremonton, Monday, October 1, 2012. His mother, Loreena Cook, is among over 260 parents who have applied for limited spots in a new state-sponsored treatment program.

Loreena Cook filled out Utah’s application for free autism treatment a week ago, pinning her hopes for her 3-year-old son’s future on a prayer.

“It’s not a good feeling,” she said. “I feel almost like if Damien doesn’t get it, there will be 250 other children who get help, and we’ll just fall further behind.”

It took nine days for applications to the state’s experimental Autism Waiver program to exceed the available number of slots, leaving parents desperate for affordable treatment options to the whim of a lottery.

“We passed 250 [applications] last night. We’re at 261 this morning,” said Utah Department of Health spokesman Tom Hudachko on Tuesday.

This does not mean the program is full, stressed Hudachko. “Your chances of being accepted to the program are the same whether you’re the first person to submit an application or the 501st.”

The state will accept applications online through 11:59 p.m. on Oct. 31. Mail-in applications must be postmarked by Oct. 31.

The applications will then be pooled and ranked by a computer at random. To ensure that the slots are fairly disbursed, a given number have been assigned to each of the state’s 12 health districts based on population.

The Cooks live in Tremonton, but hope to relocate to the Cache Valley. Damien’s father, Allen, recently left a job at the Utah Transit Authority for a similar position at Utah State University where therapists are in ample supply.

There’s no calculating Damien’s odds of winning the lottery. State officials do not yet have a clear sense of where demand is highest, other than to say most applications have come from families living along the Wasatch Front.

But Hudachko acknowledged, “We envision receiving more applications than there are spaces in several health districts.”

http://www.sltrib.com/sltrib/news/55027304-78/autism-utah-treatment-applications.html.csp

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