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Op-ed: Given constraints, Utah legislators did right by autistic children

Published March 27, 2014 5:07 pm

This is an archived article that was published on sltrib.com in 2014, and information in the article may be outdated. It is provided only for personal research purposes and may not be reprinted.

As head of the Utah Autism Coalition (UAC), and the father of a child with autism, I agree with The Salt Lake Tribune's March 19 editorial, which argued that SB57 as passed falls short of what it should have been. The original bill included coverage for the entire state-regulated market, higher limits for therapy and coverage for therapy up to age 18. I think the Tribune is absolutely correct that "all children . . . deserve care."

However, in decrying the "loopholes" in the final bill, the Tribune lumped small businesses and self-funded plans together, implying that self-funded plans could have been part of SB57. In truth, Utah doesn't have the authority to regulate self-funded plans — only the federal government can do that.

Employers that self-fund their health benefit plans, such as Intermountain Healthcare and the LDS Church, can continue to refuse coverage for autism only because the U.S. Congress allows them to do so. Eliminating that loophole would require a coordinated nationwide effort ­— an effort that I would strongly support.

Addressing the state-regulated plans, as SB57 did, is well worth doing. These plans make up around 30 percent of the market in Utah, and they set a standard of care for the state. It's difficult to estimate how many, but some plans not directly subject to Utah regulation will abide by Utah rules as a matter of policy.

Of course it was tremendously disappointing that small group plans were dropped from this bill. There can be no doubt that the coverage is needed for them, too. In the past few months, the UAC collected statements of support from 200 businesses (most of them "small"), employing more than 3,400 Utahns. These businesses care about their employees and want to protect their families from ruinous medical costs.

Why did we wind up with a lesser version of our bill? Because from the moment it was assigned to the House Business and Labor committee, there had to be a compromise or SB57 would have been killed. Without some agreement from the insurance industry, it would not have passed that committee, much less received the near-unanimous support that it did.

In the months leading up to the session, Sen. Brian Shiozawa tried negotiating with insurance companies, looking for a way to get them to stop opposing autism coverage. He didn't have to visit too many of them — only 3 companies control 80 percent of the market in Utah. They weren't willing to negotiate.

When they oppose something, it's serious opposition. SelectHealth alone pulls in more than a billion dollars in premiums every year. That buys a lot of lobbying power. There were dozens of professional lobbyists arguing against us for an industry that contributes a lot of money to campaigns.

Ultimately, though, all of the advocacy efforts by the UAC and other stakeholders paid off. The day before our last hearing, the insurance companies were finally willing to talk. Shiozawa met with a large number of their representatives, and after hours of intense negotiation, terms for the substitute bill were agreed to.

I commend Shiozawa for all his efforts on behalf of the autism community. He's fought hard for us. I'm thankful that the insurance industry came to the table and for the legislators who passed this bill.

I and my fellow advocates in the UAC will continue to work until all Utahns with autism of any age have access to medically necessary, evidence-based care. This bill is a step along the road towards that end. If we never took that first step, we'd never get there.

Jon Owen is president of the Utah Autism Coalition, a grassroots advocacy group.