A Utah pilot program offers free autism treatment for more than 250 children, but it only helps kids who hit the jackpot in a state lottery.
With more than 18,000 Utah children with autism, the Beehive State needs insurance reform to require coverage of such treatment for more children, said Jon Owen, the Utah Autism Coalition's new president, during Tuesday's live online forum Trib Talk, offered by The Salt Lake Tribune.
"Everybody is happy kids are getting treatment but I did a quick poll and a lot are not in the program because they were too old at seven," Owen said.
The online chat centered around the new pilot program, which was created by the Utah Legislature and profiled Sunday in The Tribune. The story reported that some families are dissatisfied with the pilot program because of complicated paperwork and difficulty finding therapists, especially in rural areas.
Tonya Hales of the Utah Department of Health addressed some of the concerns during the web chat.
"Overwhelmingly, the feedback that we're getting is positive," Hales said about the program, which started in December.
But she admitted there have been "bumps in the road," especially for rural families trying to connect with therapists. Hales explained the program allows for therapists to Skype, or web chat, with such families.
Trib Talk host and Tribune reporter Jennifer Napier-Pearce asked Owen if he thought virtual conversations work with autistic children.
"Seems like a good try getting services out to the rural areas," Owen said.
But insurance reform could help with this issue, too, he said, explaining that more demand for providers would attract more people to the profession.
One questioner asked why the program only provides Applied Behavior Analysis (ABA) therapy, instead of other types. Hales explained that ABA therapy has been supported by many empirical studies, and is the therapy approved by the Legislature.
Parent Angie Watterson discussed her 5-year-old son, James, one of the 250 children participating in the new program. She said she first noticed symptoms after he turned two years old.
"He kind of reverted into his shell," Watterson said.
An ABA therapist works with her son to reinforce positive behaviors. Watterson explained that one big goal was to get her son to sit at the dinner table, so the therapist rewarded James with an M&M candy if he sat still for 30 seconds, then worked up to five minute intervals.
"It has made an unbelievable difference in this child," Watterson said about the therapy.
Although happy she got into the pilot program, Watterson lamented having to watch friends with autistic children not getting any help.
"Two hundred and fifty kids is not very many," she said.
Hales said the department will give an update on the two-year pilot program in November to the Legislature.
About the pilot programs
Thirty-five states require health insurance companies to cover autism services. Utah's autism community has been pushing for a similar mandate, but instead got HB272, which created three pilot programs now underway.
The Medicaid pilot will serve up to 300 children through June 2014.
Utah Department of Health is managing an Autism Treatment Account, which supported care for 29 kids in June with money from the state, Zions Bank and Intermountain Healthcare.
The Public Employees' Benefit and Insurance Program will cover up to 50 children whose parents work for state or local government.
Administrators will be tracking the cost and effectiveness of the treatments and report their results by November.
Using a tool endorsed by experts at Utah State University, children in the Medicaid pilot will be evaluated at the start of therapy and then every six months in different domains, such as their speech, logic and behavior.