By MATT CHANDLER
[email protected] | 716-541-1654

In November 2011, Gov. Andrew Cuomo signed the autism insurance reform law aimed at mandating stronger coverage for families with children on the autism spectrum. After a 12-month transition period, the law went into effect Nov. 1, and supporters say it will offer some of the most comprehensive coverage in the country for those diagnosed with autism.

Dr. Stephen Anderson is CEO of Summit Educational Resources, described as the largest private provider of educational, therapeutic and family support services for autistic individuals. He said a challenge facing both providers and consumers is understanding what the new law mandates in terms of insurance coverage for families. To that point, the Getzville-based Summit Educational Resources hosted a workshop to explore the intricacies of the law and how it will affect local families.

"This has really been a national effort to get this law passed, primarily spearheaded by Autism Speaks," Anderson said. "Autism insurance reform laws have now been passed in 32 states, so this is a big deal with the idea of getting it to all 50 states."

The new law seeks to address fair coverage.

"There has been a long-held belief that sometimes individuals with autism are excluded from health treatments and behavioral health treatments because of their disability," he said.

The law was passed by the Legislature in 2010 but then-Gov. David Paterson vetoed it, citing concerns about where funding would come from to cover new mandates.

Cuomo later signed off on the bill, saying at the time: "When it comes to autism, early diagnosis and treatment is essential, and it is inexcusable that financial constraints would stand in the way of a brighter future for those affected by this disorder."

Insurance companies are now required to cover screenings and treatment. Previously, state law only required that insurance coverage not exclude the diagnosis and treatment of autism disorder. Most did not cover testing services not deemed medically necessary. That left many families with no choice but to pay out-of-pocket for testing for their children, local experts said.

"Prior to this, most insurance would not pay for a diagnostic work-up - which can be very thorough and time-consuming - to determine if an individual falls within the autism spectrum," Anderson said. "So people would sometimes cobble together ways of getting a diagnosis done by visiting several doctors for various reasons."

Under the new rules, a family seeking testing for a child will have an efficient way to get the testing done, he said, and ideally receive an early diagnosis so they can seek treatment options sooner. Effective Nov. 1, individuals that are enrolled in plans and are fully insured are covered, as well as those enrolled in Child Health Plus plans. Enrollees in self-funded plans aren't automatically covered, though the plans have the option to cover the autism services. Experts say as many as one in 88 U.S. children are in the autism spectrum.

Tracy Panzarella is director of clinical services at Autism Services Inc. She said prior to the new law, families unable to cobble together a diagnosis or cases where out-of-pocket payment for services was not an option resulted in children going undiagnosed and not getting help.

She sees the law as a big win for families and children.

"What is covered under this law is screening, diagnosis and treatment, as well as behavioral services," Panzarella said. "With those behavioral services, what it covers is applied behavioral analysis."

The last point of coverage is key to early treatment after diagnosis, she said.

"Because there are so many behavioral issues with autism, in New York state we now have a $45,000 cap on coverage for behavioral services, which is a pretty generous amount when you compare that to a lot of the other states," she said.

The legislation also covers psychiatric, psychological and therapeutic care, including speech therapy, occupational and physical therapy.

According to Panzarella, one of the biggest facets of coverage is the inclusion of augmentative communication devices - specialized systems that allow nonverbal individuals to "speak."

"That was one of the things that was previously not covered by health insurances because it wasn't deemed medically necessary," she said.

Asked what she sees as the biggest single benefit of the law, Panzarella said she hopes it leads to broader access for families seeking a diagnosis.

Across the aisle, insurance providers such as Independent Health said they are still struggling to sift through the regulations. Roberta Rifkin, vice president for government affairs at Independent Health, said expectations for insurers have been murky at best.

"We didn't even have the regulations in place until emergency regulations were issued in October for a start date of Nov. 1," she said. "So this is the kind of regulation where we really need to be flexible and grow with it to see how to move forward with our members and our providers because it is not clear."

Given the complexities of the services required and increased demand, does Rifkin see the New York state law as an equitable way to address the issue?

"If you look at all of the states across the country and their different autism laws, they vary a lot," she said. "For example, many states have age limits, and those age limits are all over the board, where New York has no age limit. States also vary in the types of (financial) limits they have, in some cases, it diminishes as you get older because the research is not that great on the impact of services beyond a certain age."

The bottom line, according to Rifkin: The jury's still out on the new law.

"I can't tell you - I don't think anyone can tell you - whether this is the best type of mandate or the worst mandate," she said.

In the meantime, Independent Health is doing its best to raise awareness and educate people about what is covered now.

"We have been aggressively communicating to our brokers, employers, providers and members, but this has to be something that everyone has to have a little patience with," she said. "The members have to understand the parameters that were given to us, and we have to try to interpret the implementation that we have to do."

For more information, follow Autism Speaks on Twitter @autismspeaks