The Berger family of Willow Street has three young boys with autism. So you can imagine how much they've paid for therapy over the years.

Insurance companies?

They've refused to help.

"I would hate to even guess what we've paid," says mom Jen Berger. "For our family, with three children on the spectrum, it's astronomical."

But the Bergers and thousands of other families like them are about to get some much-needed financial relief.

State lawmakers this week passed what is believed to be landmark legislation and the strongest autism insurance reform bill in the country. It will be be signed by Gov. Ed Rendell on Wednesday, and beginning next year it forces Pennsylvania insurers to pay for treatment of a wide spectrum of autism disorders.

"This will be the beginning of the end of discriminatory treatment by insurance companies toward children," said Jim Bouder, of Manheim, who has a 13-year-old son with autism. Bouder was the driving force behind the original bill in 2005.

"Yesterday's vote in the Senate and Rendell's signature on Wednesday are reminders that we do live in a state and country that care about the rights of its most vulnerable citizens," Bouder, 38, said.

The bill would require insurers to provide up to $36,000 in coverage initially for autism therapy for people under 21; the state's Medicaid program would pay for any costs that exceed that cap. Businesses with 51 or more employees would have to offer the coverage starting July 1, 2009, while smaller businesses would not have to provide any autism coverage.

Autism is a complex developmental disorder that is often not diagnosed in children until after age 3, and can impair a person's ability to communicate and interact with others. Its severity varies from person to person.

Autism is a spectrum disorder, meaning that it can occur in different forms and severity.

More than 800 children in Lancaster County and 21,000 across the state are estimated to have autism and related disorders.

Lancastrian Becky Huhn's 9-year-old son Ethan has autism. She said the legislation will help her family pay for occupational and speech therapy.

"From our standpoint, this is going to be very helpful. We pay for private insurance, and having legislation that would require coverage of things that will help my son with his disability is a great thing," she said.

"This will help many families."

The state House passed the bill unanimously on Tuesday, and the Senate followed Wednesday night by approving the measure 49-1. The lone dissenter was Republican Sen. John H. Eichelberger of Blair County.

"It is a national model, a gold standard" for the coverage of autism-related treatments, Sen. Jane Orie, R-Allegheny, said in a speech on the Senate floor.

Nearly two dozen other states have laws mandating some level of autism insurance coverage. In Pennsylvania, about 13,800 autistic children are insured under the state's Medicaid program.

But Medicaid coverage has shortcomings because a limited number of treatment providers accept it and the benefit is limited to the most severely disabled children, among other reasons, according to a recent Pennsylvania Health Care Cost Containment Council analysis of the legislation.

Insurance companies argued that a mandate would be too expensive. But they ultimately accepted a version of the bill that would require coverage for services that either improve children's behavior or help them maintain their developmental progress.

The legislation is expected to save the Medicaid program $13 million in the 2009-10 fiscal year. The health care council estimated that the proposal would cost the average policyholder about $1 a month in premiums.

Bouder, who first approached state lawmakers with the idea for the bill, called its passage a momentous occasion. He and his son Donovan will attend the signing ceremony in Harrisburg next week.

"We parents have been waiting for this for a long time, and we have been frustrated for a long time," he said. "I am really encouraged. It's going to help a lot of children."

(This report contains information from The Associated Press.)


Staff writer Tom Murse can be reached at tmurse@LNPnews.com or 481-6021.