Utah parents pin autism treatment hopes on lottery
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."
If a health district fails to fill its spaces, the extras will be reassigned to a surrounding district, he said.
The waiver program, paid for with $4.5 million in state funds and $10.5 million in federal money, was devised as an alternative after parents lobbied the 2012 Legislature to force health insurers to cover treatment. Utah is among a minority of states without an autism mandate.
Cook is thankful for any help she can get.
"We've thought of leaving and moving to California or Michigan or Wisconsin," said the 29-year-old mother of three. "This program gave me enough hope to stick it out here a bit longer."
She believes the day will soon come when insurers will no longer be able to argue that autism is a behavioral, not a medical, problem.
"This affects 1 in 37 boys in Utah. That's huge. What's going to happen when those kids reach their 20s and they're functioning like a 12-month-old?" she said. "As a society we're going to have to deal with this."
Damien was an early walker and talker. "Then, one day, he stopped talking. He was about 1," said Cook who initially credited her son's silence to a string of bad ear infections.
The technician who tested his hearing suspected autism. But it took nearly a year to reach an official diagnosis.
"Everyone warned us against it because you can be denied other basic medical care," said Cook. "It's a Catch-22. You have to have a diagnosis to get therapy. But it flags your medical claims for review."
Applied Behavioral Analysis, treatment that can cost between $20,000 and $40,000 a year, was out of reach for the family. So Cook picked up some text books and tried doing therapy on her own.
"I'm really lucky. Damien is low on the spectrum, low functioning, but he's an affectionate and loving little boy. He's antisocial in groups and afraid of loud noises and sounds, but still loves hugs and cuddling up with you," she said. "Even so, it feels like you lost a child, so you try everything in your power to find them again."
The home therapy seemed to help. But Cook said, "It took me about a year before I burned out."
If Damien wins Utah's lottery, Cook hopes to work with graduate student therapists in training at USU's Assert program.
The Autism Waiver program also pays for respite care and covers the cost of assessing children and mapping out a treatment plan.
Lottery winners will be notified starting Nov. 13 and asked to provide medical proof of their child's diagnosis with autism spectrum disorder. They will have 10 days to submit this information. After that they'll be screened for eligibility.
"We could have kids enrolled and selecting providers by late November to mid-December," said Hudachko.
It's not too late
Children between the ages of 2 and 6 who meet certain requirements can still apply for free, in-home autism treatment through the Utah Autism Waiver program.
To be eligible, kids must:
Be clinically diagnosed with an autism spectrum disorder.
Be a U.S. citizen and Utah resident.
Have been born between April 1, 2007 and October 31, 2010.
Not have assets, such as a bank account or trust fund, in his or her name in excess of $2,000.