Saying autism should be treated like other childhood illnesses such as cancer and diabetes, two lawmakers and 30 community supporters promoted a bill recently that would require insurance companies to cover up to $50,000 a year in autism therapy.

“We realize it’s an uphill battle in getting it passed,” says chief sponsor Sen. Howard Stephenson, R-Draper. “We believe it is a barbaric society in which health insurance covers Viagra for older people and yet will not cover autism treatment for younger children.”

Stephenson has opposed insurance mandates in the past, including for birth control and fertility treatments, but says he considered those measures less-important “nice-to-haves.”

Bill drafters have not yet calculated how much the mandate would cost Utahns who pay private insurance premiums. But supporters says states with similar mandates have found premiums rise on average up to $1.25 per policy holder per year. It would also cost the state and local governments an undetermined amount, because government employees’ insurance plan would be part of the mandate.

However, Medicaid and CHIP would not be included in the mandate because it’s not seen as politically feasible. Nor would self-insured companies, which have policies governed by federal rules.

Those exceptions leave one-third of Utahns eligible for coverage, says Kelly Atkinson, executive director of the Utah Health Insurance Association. The association hasn’t taken a stand against the bill, but Atkinson says Thursday that mandates will increase insurance costs on small businesses at the same time the governor is pushing for mandate-free policies to make them more affordable.

“It isn’t that we don’t have sympathy for this, we do,” he says. “When [House Speaker David Clark] is looking for ways to make insurance more affordable for his target population, small businesses, this is going in the wrong direction.”

Dubbed “Clay’s Law” for a third-grader who “recovered” from autism after therapy, the bill would mandate coverage for a variety of treatments, including occupational and speech therapies, drugs and psychological care.

It directs the state insurance office to determine deductibles, duration and amount limits for those therapies.

But for “early intensive behavior therapy,” the bill explicitly mandates up to $50,000 per year for children up to age 9. The coverage amount would drop to $25,000 a year for such treatment for children ages 9 to 17.

Behavior therapy that is considered effective provides one-on-one treatment for up to 40 hours a week at home, reinforcing communication and appropriate social behavior and discouraging negative behaviors. Studies have found up to 40 percent of higher functioning autistic children who receive at least two years will eventually be indistinguishable from their peers.

Another 40 percent improve but still need help and about 10 percent won’t improve.

The insurance industry questions those claims of success.

Most parents cannot afford the $50,000 a year in private therapy. And while the state provides early intervention services to disabled children, it’s not as intense.

Brittany Recalde couldn’t afford the 40 hours a week needed for her daughter, Mira, and says Thursday she will have “tremendous guilt” for the rest of her life. While the 4-year-old now plays with toys, is social and shows imagination, she also displays rigid, repetitive behaviors common to autism and throws herself on the ground and bangs her head on the floor.

Recalde says she expects her daughter will eventually attend a mainstream classroom, but doesn’t believe she will turn out like Clay Whiffen, who is no longer considered to be on the autism spectrum.

“Those children should no longer be ignored by the health insurance industry,” she says. “If given a chance, these children can recover.”

Julien Smith, a neuropsychologist who treats patients with autism, says Utah’s pediatric community endorses the bill. She noted that treating children will save some of the $3.2 million it is estimated to cost to care for an autistic person over his or her life. She says autism is a life-long diagnosis but its symptoms can be ameliorated with treatment.

Geri Vohn believes her son will “recover,” but has little faith in the public school system, which is where Kaleb is left if the bill doesn’t pass. The 4-year-old can’t talk or eat with utensils. He has been making progress – he no longer spits and bites – with behavior therapy through a state-funded autism preschool. But that therapy ends after this year.

“You find out [behavior therapy] will help, but nobody can afford it,” she says. “It’s heartbreaking.”

Source: Heather May/The Salt Lake Tribune