Autism families rally in Macon for ‘Ava’s Law’

pramati@macon.comFebruary 23, 2014 

There’s a bill in the Georgia state Senate that will, if signed into law, would provide children 6 years old and younger diagnosed with autism with up to $35,000 in insurance coverage.

Families of autistic children said at a rally Sunday that the bill is a step in the right direction, since many private insurers in Georgia provide little to no coverage for those children.

However, what the bill would provide for is just a drop in the bucket for what families of autistic children say they need.

That’s why families who attended the rally are hoping that the Legislature will approve what’s being called “Ava’s Law,” which would provide comprehensive insurance coverage to autistic children until they turn 18. The rally was held at El Sombrero restaurant on Forsyth Road in Macon.

“Ava’s Law” is named for Ava Bullard, of Lyons, who was diagnosed with autism at age 2, but who did so well after her family paid for treatment that she eventually overcame her condition. Ava attended Sunday’s rally.

Julie Evans, who has a nephew with autism and who organized the rally, noted that if she took a child who wasn’t speaking to a speech therapist for treatment, it would be covered by insurance. The moment, however, the child is diagnosed with autism, going back to the same speech therapist wouldn’t be covered.

“We want people to know the state doesn’t require insurance companies to cover it,” she said.

Judith Ursitti, who works for Autism Speaks, in Washington, D.C., said Georgia is one of 16 states that hasn’t passed any sort of legislation to require insurers to cover autism. According to the Centers for Disease Control and Prevention, one in 88 children is affected by autism -- worse than AIDS, cancer and diabetes combined.

Because insurance has regulations on both the state and federal levels, getting changes isn’t easy, Ursitti said.

“I think (the Senate bill) is a huge step forward,” she said. “The majority of research indicates early intervention could mean that half of children could lose their diagnosis (with treatment). It would make a huge difference. But there are a lot of older kids who need this. ... Most states exclude (autism coverage) because they expect the schools to cover it. But the schools don’t have the resources.”

Janet Ward, founder of Central Georgia Autism, said her son Peyton was diagnosed with autism when he was 15 months old. Thanks to regular therapy, he’s a straight-A student who can blend in with his classmates. But her family has had to cover most of Peyton’s autism treatment costs themselves.

“I can tell you, $35,000 a year isn’t enough,” she said.

She noted a study from the Harvard School of Public Health that estimated the incremental cost of covering someone with autism is $3.2 million during a lifetime.

Ursitti said research has shown that costs would only increase 32 cents per month for insurance premiums if coverage is extended until the autistic person turns 18.

“There’s a huge taxpayer burden that (lawmakers) aren’t considering,” she said. “(If people with autism need help) someone has to take care of them. That ends up being the taxpayer.”

State Rep. Bubber Epps, R-Dry Branch, attended Sunday’s rally and said the local legislative delegation is in favor of reforming the insurance laws. However, he said he’s uncertain that when and if the Senate bill crosses over into the House that lawmakers will be able to extend the new coverage beyond 6 years of age and for increased benefits.

“Sadly, probably not this year,” he said. “The important thing is to get this bill into (the House) and encourage the members of the House to support it. ... (The bill) is not where it needs to be, but it’s going to be a work in progress. We can always add to it. The legislative process isn’t always the fastest. ... I think you’ll see the Macon-Bibb delegation behind this. It attacks every corner of the state.”

Epps said the Senate is expected to vote on the bill early this week. If it passes, it would be sent over to the House on Crossover Day.

To contact writer Phillip Ramati, call 744-4334.

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