It's likely you know a child with autism as the prevalence of the disorder continues to grow at alarming rates.
According to the Utah Registry of Autism and Developmental Disabilities, one in every 77 Utah children has some sort of autism spectrum disorder. Research has shown that early intervention and intensive behavioral therapy can help children with autism lead almost normal lives, including going to public school, but the necessary treatments can cost families thousands of dollars a year.
"Treatments can cost around $40,000 a year for the behavioral programs because these children require very individualized one-on-one care," said Laurie Bowens, director of the Bridges program at Kids on the Move. "Most insurance plans don't cover that treatment either."
Now one Utah representative is proposing a solution to help families get the treatment they need. Rep. Ronda Menlove, R-Garland, is sponsoring House Bill 272, which would create a pilot program for autism funding.
Menlove says there is no denying the need for such a program.
"We have a growing number of parents who are mortgaging their homes, selling everything they own trying to pay for these services," Menlove said. "If treatment is provided in the early years, 40 to 50 percent of those children will be able to successfully enter school without the need for special education. In the long run if these children grow into adulthood without any kind of treatment they sometimes require additional state services."
The pilot program would last for two years and help families pay for behavioral treatment for eligible 2- to 6-year-olds.
Funding for the program would come from three different places. State employees who are covered by the public employee health program would be eligible; Menlove says 35 to 40 children would be covered by that insurance plan and that the pilot would be funded by reserves already allocated for autism treatment. Medicaid would be the second source of funding for families who qualify. The third source of funding would be an Autism Treatment Account that was set up during the 2010 legislative session in a bill sponsored by House Speaker Becky Lockhart, R-Provo. Menlove says that account currently has no money in it but that she is seeking donations from insurance companies and private donors to help fund treatment.
Menlove also said she is only proposing a pilot program because it is unclear how the insurance landscape could change in the next few years but says her program is a better solution than an insurance mandate.
"Mandates are burdensome on whoever they are placed on," Menlove said. "We worried that if we did a mandate it would place unnecessary stress on small businesses in a time when the economy is still recovering."
Kayle Bringhurst at Giants Steps in Orem says with more funding their program might be able to take in more children. He says they have a two-year, 120-person waiting list and that all of those children won't get in.
"We don't do enough preventative treatment," Bringhurst said. "Many families wait until it becomes too critical and then we are spending more money in the end."
Menlove says families would be required to pay for part of the treatment they receive. The program would work on an 80/20 plan, and families would receive no more than $30,000 a year, which Menlove says isn't enough to cover all of the treatment children need.
Bowens says passing the bill is crucial to help autistic kids get the help they need.
"I can't emphasize enough -- there is an absolute essential need for this. There isn't the funding right now and so many kids are slipping through the cracks," Bowens said. "I am really grateful that this bill is being proposed because autism is not going away and it is time for Utah to take of these children and families."
In a House Health and Human Services Committee meeting held Friday there was overwhelming public support for the bill. It was moved out of the committee with a favorable recommendation on a 6-1 vote and will now be considered by the full House of Representatives.
House Bill 272
Sponsor: Rep. Ronda Menlove, R-Garland
Pilot Program for Coverage for Autism Spectrum Disorders -- This bill would create a pilot program for autism funding.
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Autism funding bill moves forward in Legislature