Autism advocates pull support for 'Clay's Law'

A grass-roots, well-mobilized coalition of parents with autistic children has pulled its support for SB43.

Amendments that have caused the bill to move slowly though the legislative process have all but removed the core reason for bringing to lawmakers' attention in the first place, said organizers of the Utah Autism Coalition.

The group was asking for a mandate on some private health insurance companies to cover the cost of in-home, intensive behavior and learning modification for young children.

The latest version of "Clay's Law," named after 8-year-old Clay Whiffen, who is apparently autism disorder-free due to the in-home teaching cited in the bill, is at best a shadow of its original purpose, the boy's mother, Leeann Whiffen, said Tuesday.

"Clay's Law no longer exists in this legislative session," Whiffen said. "Our elected officials have failed to act upon the cries for help from their constituents to provide desperately needed treatment for their children and the pleas of taxpayers for financial relief to the state. (SB43) is now a far cry from the financially and morally responsible bill we created."

The adage that something is better than nothing doesn't apply in this case, she said.

Lawmakers' action and the course of the bill compounds the ongoing damage the bill intended to help rectify. Quick action, such as the training courses mentioned in the bill, was needed from lawmakers because therapy works best for kids under age 9 or 10, according to the coalition.

"The window of opportunity for optimal treatment will likely close for many children who currently have autism across our state while we agonizingly wait for lawmakers to do the right thing," Whiffen said.

The coalition will continue advocating for autism insurance coverage in Utah until it eventually becomes law, she said.

The autism bill was arguably the most rallied-around, most discussed in committee hearings and more divisive among lawmakers than almost any other issue this session.

But the amendments couldn't be helped, lawmakers said. Opponents said their hearts were behind the parents, but the state is behind an economic eight ball, and that means lawmakers are acutely against imposing mandates or anything that adds to medical-care cost shifting.

Money is an issue with the autism bill. The training is apparently working wonders in kids, and that's great, opponents said, but the $30,000 to $50,000 a year price tag is just too high.

As it reads now, the bill would only benefit children not yet born, and only if their parents purchase an insurance policy that covers the training before the child is 3 months old.

Autism Speaks, the largest national autism organization, endorses the coalition's withdrawal of support for SB43.

"It's the No. 1 thing we hear from parents: What's more difficult than knowing there's an effective treatment for your children, but you can't afford to offer it to them because it's not covered by insurance?" said Elizabeth Emken, the group's vice president of government relations. "Autism Speaks and the Utah Autism Coalition call on Utah's legislators to join the growing number of states that have ended health-care discrimination against children with autism."

E-mail: jthalman@desnews.com