When the Eliasons realized their youngest child had autism, their lives changed forever.
The diagnosis wasn't the only reason.
"It was hard enough to discover that he had autism, but then it was just an added burden to know we didn't have a way to financially take care of him unless we left the state," said Brian Eliason, Isaac's dad.
As a data specialist at Intermountain Healthcare, he was covered by its insurance arm, SelectHealth, which didn't pay for autism treatment for his son.
So the Provo-based family of six had a choice: Either spend thousands on treatment or find another state where insurers were more likely to help pay for it.
In 2008 in a decision that felt bitingly unfair, the Eliasons moved to Colorado, leaving friends and family behind. But for April alone this year, their insurance company wrote a check for $3,534 for Isaac's treatment that month. It included speech and occupational therapy along with Applied Behavioral Analysis (ABA), increasingly recognized by states and other levels of government as effective therapy for autistic children.
The Eliasons are part of what appears to be a small but growing number of Utah families with autistic children either leaving the state or seriously considering a move.
A recent report by the Centers for Disease Control and Prevention found that one undisclosed area in Utah had an autism rate of 1 out of 47 children, the highest in the nation. When Utah families' insurance doesn't cover autism, they may take extra jobs, borrow from family and pour thousands each year into helping their children.
The tab may be more than $30,000 annually, forcing some to look to other states where lawmakers have required insurance companies to pay for autism treatment.
Not every family has the luxury of leaving. Some families are tied to Utah by a parent's job, so they may instead shop for the best services provided by Utah school districts.
Believing in a solution • Despite advocates' recent efforts at the Legislature, insurance companies in Utah are not required to cover autism treatment.
SelectHealth, which insures about 500,000 Utahns, said in a statement that experts disagree about the effectiveness of various therapies, which generally "address developmental or behavioral needs."
Its plans, it said, "are intended to cover medical needs, rather than to modify behavior or achieve educational objectives."
But earlier this year, the U.S. Office of Personnel Management concluded there is now sufficient evidence to categorize ABA as medical therapy, and it decided to allow federal employees' insurance plans to cover it for children with autism.
"Insurance companies need to be held accountable," said Anne Eliason, Isaac's mom. "Brian and I were incredibly lucky that we had the option to leave, but most people don't have that option. What, exactly, will the state do when these kids turn 18?"
Isaac was about 20 months old when they moved. After four years of treatment, he is far from cured, something his parents say they now realize is impossible. Though they hope he will be independent one day, they are bracing themselves for a lifetime of responsibility.
But the Eliasons believe the therapies have made an enormous difference. Before treatment, Isaac made noises but spoke no words. His eye contact appeared to be more like "blank stares." He was extremely unsocial. Now 5, he can communicate his needs with words and gestures. He looks into a person's eyes while talking.
After their move to the Denver metro area, Eliason worked for Children's Hospital Colorado, which he says covered Isaac's speech and occupational therapy. He estimates those services alone amounted to more than $10,000 per year, and the coverage later expanded to include ABA.
The hospital declined to comment on its insurance benefits.
Soon after the family arrived, the state passed an autism insurance mandate law, which Eliason had felt was "imminent" when they moved.
"My fear is Utah is going to be the 50th [state] to have a mandate," he said.
Making the move • In Colorado, the law requires ABA to be covered annually for up to $34,000 in services for autistic children from birth through age 8. Kids from age 9 through 18 are covered up to $12,000 annually. Other treatment is not capped.
But the law helps only about 30 percent of families with autistic children because it impacts only certain insurance plans, depending on who regulates them, their funding and where they originate. The law exclusively affects plans regulated by the state of Colorado. In one example, "self-funded" health plans created by businesses for their employees are generally not subject to state regulations.
Some health plans have denied coverage due to confusion about what companies the law covers. Autism advocates say the state still has a ways to go, such as from increasing special-education funding to decreasing waiting lists for disability services.
"I'm glad [the mandate] is attracting people to our state," said Bridget Cessar, interim executive director of the Autism Society of Colorado. "But I would also say that it's not the only thing that a family should be looking at when they move here."
Ashlie Fernandez and her family, then living in Tremonton, spent about six months researching where they could relocate to receive better insurance coverage for their two autistic children. As Medicaid clients, they knew that Utah's program does not cover ABA therapy although about 200 children will receive it in a pilot program beginning this fall.
In March, the family moved to Missouri, where ABA is covered. Fernandez said she knows two other Utah families with autistic children who have moved to New York for better services.
"When you give these kids services now, they're not living on food stamps when they're older," the mom said. "Studies have shown the later you wait to get these services, the less likely your child has of reaching a high functioning capability."
Carlene Boden and her husband, both physicians assistants living in Pleasant Grove, are considering a move to Alaska, where the Legislature recently passed an autism insurance mandate.
The governor has yet to sign the bill. The mother of a 5-year-old autistic girl, Boden said she feels it's sad that they might move.
"We could continue to work as much as we can, borrow money on the house, borrow from our parents to get her what she needs," she said. "Or we go to a state where we make more money and our insurance covers it."
They are now paying about $1,000 each month for their daughter's treatment.
"It would be more if we had more money," the mom said. "That's not actually giving her all the recommended treatments."
'There's nothing there for your kid' • Eliason switched jobs in Colorado in 2011. He now works for Healthcare Quality Catalyst, which he feels is supportive of his family's needs. But ironically, it provides insurance from Utah-based SelectHealth, which still doesn't cover autism treatment.
After relying on bridge insurance from the federal program known as COBRA for 18 months, Eliason is faced with another quandary: Either he must pay for Isaac's autism treatment out-of-pocket or search for another job.
Autism has changed the way Eliason looks at the world. While talking with members of his LDS Church ward a few weeks ago, Eliason told them that he thinks the free market can work, but it doesn't for autism. He'd like to see the LDS Church take a leadership role in the fight for autism coverage, as it has with other issues.
"If you do have the option and you're well-educated and have a good career pathâ¦ you're going to leave Utah," the father said. "There's nothing there for your kid."
firstname.lastname@example.org What states require insurance companies to cover autism?
Several dozen states have an insurance mandate although the rules vary. Check with each state individually for the most up-to-date information. bit.ly/ItajXh
What would a Utah mandate cost?
Advocates and some studies say that adding an autism mandate would have a nominal impact on premiums. See a past look at that issue in Utah at http://bit.ly/youNzl.