- Associated Press - Saturday, August 16, 2014

PHILADELPHIA (AP) - Tony Burke was an energetic 2-year-old who loved drawing purple pictures of Barney and jumping on trampolines. But then his parents began to notice how he would grunt instead of talk, and couldn’t look anyone in the eye. Before his third birthday, in 2005, he was diagnosed with autism.

“It felt like my heart had been ripped out,” said his mother, Suzanne Burke of Philadelphia.

Seeking the best care, his parents found applied behavior analysis (ABA), a one-on-one therapy considered the most effective treatment to date for autism.

While doing ABA, Tony’s grunts became words like “cookie” and “juice,” which later evolved into sentences, such as “Can I have some juice?” The intensive therapy was working.

But then the family’s insurance started denying claims.

Even though laws in both Pennsylvania and New Jersey require insurers to pay for ABA, Tony’s therapy wasn’t covered in school, where he most needed help. And it was impossible for the Burkes to pay the nearly $80,000 a year this therapy costs.

Without ABA, Tony’s language skills plummeted. His behavior spiraled out of control. “You feel helpless,” said Tony’s father, John Burke.

While autism laws were enacted before 2010 in both states, families like the Burkes are still finding large gaps. Coverage for ABA, considered the gold standard of care for autism, can be hard to obtain. Payments can be delayed. And the laws do not even apply to autistic adults.

These problems will continue to fester, even as the developmental disorder grows more common. Though it’s not clear why, autism’s prevalence is about 120 percent higher than estimates from 2000, with 2010 data showing that it now affects one in 68 U.S. children.

In New Jersey, the prevalence is even higher, at one in 45 children. Estimates in 2008 put Pennsylvania’s prevalence at one in 75 children. A 2005 census identified 5,510 individuals with autism in Southeastern Pennsylvania.

Autism inhibits social interaction and communication. It produces repetitive behaviors, such as hand-flapping. It is five times more common in boys than in girls.

Since the law was passed in New Jersey, “we’ve seen an ebbing, but we still see a lot of problems,” said Princeton-based attorney Jodi Bouer, whose practice helps autistic patients use insurance. Autism New Jersey, an advocacy group in Robbinsville, has collected complaints from 25 families about mandated coverage, said the group’s Elena Graziosi.

In Pennsylvania, the prevalence of complaints is harder to gauge because the law also compels Medicaid, insurance for the poor, to cover autism services. Providers who don’t get paid by private insurers will often just bill Medicaid. This masks the full extent of coverage issues, said David Gates, director of policy for the Pennsylvania Health Law Project.

Philadelphia City Councilman Dennis O’Brien, a former state representative who was the primary sponsor of the state’s autism bill, also thinks the law has fallen short.

“We’re disappointed,” he said. “It’s the law. The law is very plain.”

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