OREM — A little boy looking at his mom and saying "hi" may not seem significant for many, but it is for the mother whose son wouldn’t even acknowledge her before he started treatment for autism spectrum disorder.
This is just one success story to come out of a Kids on the Move program called Bridges, which provides services for children ages 2–8 with autism spectrum disorder. The program has grown immensely over the past year for a variety of reasons, from 30 children to nearly 100.
The Centers for Disease Control and Prevention reports that 1 in 47 individuals in Utah are on the autism spectrum — the highest rate in the United States.
Rising statistics over the past decade can be attributed to increased awareness and less stringent criteria for diagnosis, according to Deborah Bilder of the Autism Spectrum Disorder Clinic. Consequences from this can be seen in rising enrollment numbers at autism clinics and schools, particularly because Utah government funding is facilitating more treatment at places like Kids on the Move.
Without the autism treatment account grant, Tara Hendriksen’s son Ty wouldn’t be able to participate in Bridges therapy to the large extent he is now. The grant pays for him to attend 20 hours a week for what would otherwise cost the Hendriksens $37,000 a year.
Hendrickson said her son has received life-changing services that took him from being nonverbal and throwing 15 tantrums a day to developing language skills and having meltdowns just once or twice a day — if at all.
“He’s a completely different kid than he was just a year ago,” Hendriksen said. “His little personality has been able to come through and he tells me all the time, ‘Mom, I’m happy.’
"You can just see how much happier he is because he can express himself.”
Bridges, which began with just four preschool children in 2010, started providing services through an autism treatment account and a Medicaid autism waiver at the beginning of 2013.
“I’m really grateful that the state has taken the initiative to put some funding toward this because when we first started our program, it wasn’t available, and it was very devastating to watch parents just yearning and begging for something and not having access to it,” said Laurie Bowen, director of Bridges.
Therapy costs can run up to $60,000 a year, a cost Bridges tries to keep lower for its families. Still, autism services simply aren’t affordable for many families.
During the 2012 legislative session, a bill was passed for a two-year pilot program to help provide autism services. The three legs of the bill are the Medicaid waiver program, an autism treatment account (funded both privately and by the Legislature) and the public employees health plan.
The Medicaid waiver requires a valid autism spectrum disorder diagnosis and Medicaid financial eligibility to be met.
“But that’s a little bit different than standard community Medicaid eligibility, said Tonya Hales, director of the Bureau of Authorization and Community Based Services. “Only the child’s income and assets are considered, so things like child support could come to play. ... But we didn’t have any children who weren’t available based on income.”
All 300 eligible applicants received the waiver, which provides about $29,000 a year for children ages 2–6 to receive applied behavior analysis therapy.
The waiver covers 10-15 hours of in-home therapy and up to three hours of respite for the family each week, as well as case-management services from the state. Hales said this so far has been enough to meet the children’s needs.
“The data that we do have is quite positive,” Hales said. “We have some really great stories from families and a lot of appreciative families that are really grateful for the help.”
The funding sources have requirements for autism service providers, which caused some Utah clinics to decide to opt out of using the funding. Bowen said it was a heavy burden for Bridges to get the funding programs running and the additional staff trained.
They had to start providing in-home services and hire a board certified behavior analyst to oversee the program.
A large part of Bridges’ recent growth stems from the availability of the Medicaid autism waiver, which about half of the children at Bridges use. However, the waiver allows for only 15 hours of services that must be in-home services — a downfall of the program, according to Bowen.
Through the separate autism treatment account, about 10 percent of the children in the Bridges program receive 20 hours of therapy at the facility.
“We have found that when they’re in a public setting they do better because they have more access to teachers and to students, so they get that social opportunity rather than just being at home,” Bowen said.
Part of Bridges’ expansion includes new CEO Scott Bean, who has a personal connection to Kids on the Move. Twenty years ago, he and his wife took their daughter there for diagnosis and help.
When Bean first went there, the founders looked him in the eye and told him to never underestimate what his child could accomplish. Now he’s telling parents of children with a delay or disability the same thing.
“Autism is no respecter of money or status in society or anything else and it affects every family profoundly,” Bean said. “What we need to figure out in society is how to provide services to people who wouldn’t otherwise be able to receive them.”
He said the legislative funding will allow for more children to receive the help they need and aid Kids on the Move with its goal to provide more qualified people to help individuals with autism spectrum disorder.
“It’s given hope to parents where they didn’t have any hope before, especially for those who didn’t have money,” Bean said. “The Medicaid waiver all of a sudden changes the landscape because now it gives parents the opportunity to get help for their kids.”
While the funding is bridging some gaps, the pilot program will last only through June 2014 unless it is extended when the Legislature revisits the issue at the beginning of the year.