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Families of children with autism scored a major victory this legislative session with passage of a bill requiring health insurers to cover autism treatment.

Once signed into law, SB57 will prevent "incalculable anguish" for many parents struggling to afford expensive Applied Behavioral Analysis (ABA) therapy for their kids, said sponsoring Sen. Brian Shiozawa, R-Cottonwood Heights.

But not all parents, and not immediately.

Only large employer and individual health plans sold or renewed starting Jan. 1, 2016, are subject to the mandate. Small businesses and self-insured companies are exempt, letting some of Utah's largest employers off the hook.

Among the biggest: Intermountain Healthcare.

The nonprofit hospital chain markets autism care, and its doctors prescribe it, but it doesn't cover those services for its 33,000 employees, said Shane Baker, the husband of an Intermountain employee and father of a 4-year-old boy with autism. "It's very ironic."

Baker had to pick up a second job to pay for ABA therapy for his son. His wife's health plan doesn't cover the treatment, nor does it cover his son's occupational or physical therapy, since autism is his primary diagnosis. Only recently did it start paying for his speech therapy, coming into voluntary compliance with the Affordable Care Act, said Baker, who hopes Intermountain will be similarly swayed to adhere to SB57.

"We've gotten the sense lately that they may reconsider their benefits," he said.

And the sooner, the better, he added. "We could spend more time being a parent, instead of hassling over claims, doing the therapy ourselves or working extra jobs to pay for it. To spend time just being with my son, loving my son, that would mean the world to me."

Asked whether changes are afoot, Intermountain issued the following statement: "Each year Intermountain evaluates and updates its insurance coverage for employees considering the local market and the needs of employees and their families. The evaluation includes a review of the clinical services, cost, and benefits offered by competing organizations."

Other major managed care networks provide autism coverage, including the renowned Mayo Clinic, according to the Utah Autism Coalition.

Starting a trend? • Closer to home, the University of Utah and its hospitals and clinics are considering adding autism coverage this summer, months before the mandate takes hold, said spokeswoman Kathy Wilets.

For the U., change is inevitable. Under a law passed two years ago, any insurance mandate imposed on the private sector must also apply to the public sector — specifically, the state of Utah, including public schools and colleges.

But Autism Coalition president Jon Owen is confident corporate giants will follow suit. "I've seen it happening in other states and I hear about it happening here," said Owen.

He points to a 2011 Mercer HealthCare Survey showing 78 percent of large employers offer some autism benefit and 31 percent voluntarily include intensive behavioral therapy such as ABA. Among them are firms with a large presence in Utah, including Home Depot, American Express, JPMorgan Chase, Wells Fargo, Adobe Systems, Inc. and Oracle.

Deseret Mutual, the health plan for The Church of Jesus Christ of Latter-day Saints, declined to say whether it's considering adding autism treatment to its list of benefits.

"While Deseret Mutual Benefit Administrators provides medical coverage and many services for people with autism, our health plan administrators are always researching and evaluating new, emerging treatments to better the lives of our clients," said church spokesman, Cody Craynor.

Still, Owen is optimistic, noting employees who don't have to worry about health care are happier, more financially stable and more productive, and firms are recognizing those less tangible, "quality of life" benefits.

Unintended consequences • But SB57 could also have the opposite effect and cause more employers to self-insure as a means to avoid the mandate.

This already happens in some states, and the Affordable Care Act has given companies extra incentive to self-insure, or pay employee claims themselves instead of purchasing an off-the-shelf product from an insurer.

Self-insured plans are immune to the health law's taxes, benefit requirements, profit limits and other rules, and increasingly smaller companies are eyeing the option as a means to sidestep the law.

"We are seeing small and mid-sized companies want to investigate self-funding who likely would not have prior to the ACA," said Utah insurance broker Ernie Sweat.

Some have a lot of younger and healthier employees who are disadvantaged by new insurance pricing rules and want to avoid "rate shock," or soaring prices, he said.

A shield for small businesses • It was once almost unheard of for small companies with fewer than 50 employees to bear the risk of covering unexpectedly high claims. To protect themselves, businesses can buy reinsurance, or stop-loss coverage, which kicks in to pay claims in excess of a certain amount, say $20,000 or $30,000.

Nationally, stop-loss limits have fallen in response to demand by smaller companies.

In Utah, though, it's not easy finding reinsurers willing to work with companies with fewer than 50 employees, said Sweat. "We work with a handful who will go down to 25 and one that will go down as low as 10."

Also, Utah benefits from lower-than-average insurance rates, and Sweat isn't as convinced as some in his industry that autism coverage will cause them to markedly rise.

Data from states with autism mandates shows the per member, per month cost of providing autism services was 15 cents the first year and 31 cents the second year, with greater usage due to increased awareness, according to the national advocacy group, Autism Speaks.

In Utah, believed to have some of the highest rates of autism in the country, the stakes are higher — making SB57 all the more necessary or risky, depending on your point of view.

Self-insured companies may wait for any fallout before making health plan changes.

SB57 allows insurers to withdraw autism benefits if, after 12 months, they can show it caused a 1 percent rise in premiums, or more.

The measure also allows insurers to review patients' treatment plans to ensure the care is working.

Twitter: @KStewart4Trib —

Winners and losers

Only large employer and individual health plans sold or renewed starting Jan. 1, 2016, are subject to SB57's autism coverage mandate.

Once signed by the governor, the new law would require plans to cover 600 hours of behavioral therapy annually for children between the ages of 2 and 9, with families picking up co-payments and deductibles. Coverage would also include pharmaceuticals, psychiatric and psychological treatment, occupational and speech therapy and medical treatments.

Small businesses and self-insured companies are exempt — the exception being the state of Utah, including schools and colleges.

Another bill, HB88, will pick up some of the slack, making Utah's autism "lottery" permanent. Lawmakers approved the $2 million measure, which will provide ABA therapy to about 270 autistic children through a lottery run by Utah's Medicaid program. HB88 also adds autism benefits to the Public Employee Health Plan, which covers many city and county employees.

Following is a breakdown of insured Utahns who fall under the umbrella of SB57 — and those who don't.

Mandated coverage

470,910 Large group policyholders

157,707 Individual policyholders

90,000 State employees

No mandated coverage

782,236 Residents covered by self-insured policies

192,955 Small group policyholders

244,724 Medicaid enrollees

37,700 Children's Health Insurance Program (CHIP) enrollees

Source: Utah Health Insurance Market Report, 2012