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Autism advocates divided on NY insurance bill

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ALBANY, N.Y. — Legislation that would require health insurers to cover screening, diagnosis and lifetime treatment of autism spectrum disorders has reached Gov. David Paterson's desk, but it falls short with some advocacy groups.

The bill, approved unanimously by the Senate and Assembly, would require the state Department of Health to identify treatment and therapy options that are evidence-based, peer-reviewed and clinically proven. Regulations specifying what will be covered would have to be drafted within a year, in consultation with insurance companies and mental health and disabilities experts. Insurers could review individual coverage to confirm it's medically necessary.

Autism spectrum disorders impair thinking, feeling, speaking and the ability to relate to others, the National Institute of Mental Health says. Usually first diagnosed in early childhood, they range from a severe form called autistic disorder to a much milder form, Asperger's syndrome.

One of every 110 children in the United States has autism, the U.S. Centers for Disease Control estimates. In New York, schools have classified 17,000 students from ages 4 to 21, said state lawmakers sponsoring the legislation.

Bill supporters say the mandate will expand coverage for accepted approaches like routine toddler screening, speech and behavioral therapy and anti-seizure drugs.

"Those are all things we think will be covered," said Paige Pierce, executive director of Families Together in New York State. Pierce, whose son is autistic, said the bill is clearly a step forward.

Twenty-three other states have adopted similar measures, said Judith Ursitti of Autism Speaks.

Opponents say the bill gives give insurance companies standards to use in rejecting treatments for a disorder that differs widely and whose cause has not been identified.

"Without a firm cause, there's no known standard of care," said Michael Smith, chairman of the Foundation for Autism Information & Research, who also has an autistic son. He said it would "handcuff doctors," who might, for example, prescribe off-label drugs.

Both sides agree that current insurance coverage isn't adequate. With Medicaid as the main source of reimbursement, parents of young children often spend thousands of dollars annually for therapy and treatment. The expense declines when children begin getting services through school.

Autism disorders can be a lifelong issue. Statistics show 79 percent of young adults with autism still live with their families, said Marcia Roth of the Autism Action Network. That includes her adult son, she said.

Smith complained that the lobbyist influential in the writing of this bill, former gubernatorial candidate John Faso, works for Manatt, Phelps & Phillips, a company whose clients include many large insurance companies. Smith fears insurers wanted to tailor a narrow bill that would cost them less money. Faso said while the firm has many clients in many states, he was working in this instance for Autism Speaks.

The Health Plan Association, which represents insurers, generally opposes mandates because they increase the cost of health care, and found this one particularly troubling because it has no annual or lifetime cap on what could be paid for services, according to spokeswoman Leslie Moran.

Training parents to use behavior management techniques, combined with medication, reduces serious behavioral problems in children with autism spectrum disorders when compared to medication use alone, the Journal of the American Academy of Child & Adolescent Psychiatry reported in December.

Opponents say the new regulations would raise state costs. Supporters say the increase would be an expected 1 to 2 percent rise in health care premiums.

Paterson will review the bill when it reaches his desk, spokeswoman Maggie McKeon said Friday.

Recent autism research: http://iacc.hhs.gov/summary-advances/2009/index.shtml