SchaferAutismReport: Parents Press States For Autism Insurance Laws

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Subject: Parents Press States For Autism Insurance Laws

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In This Issue:

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FINANCES

Parents Press States For Autism Insurance Laws

New Research Reveals Unpaid Caregivers' Struggle

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PEOPLE

Autistic Boy, 3, Left For Hours On NYC School Bus

5-year-old Wanders Onto Roller Coaster Tracks At Amusement Park

Autistic Teen Tasered

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FEATURE

Reaching an Autistic Teenager

PUBLIC HEALTH

Grandad Jabs At Top Doctors Over MMR Vaccine in UK

Canada Moves To Ban Bisphenol A In Baby Bottles

EVENTS

" Greater Boston Walk for Autism " Raises Over $1 Million

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FINANCES

Parents Press States

For Autism Insurance Laws

By Carla K. . bit.ly/4bunsE

AP — In Washington state, Reza and Arzu

Forough pay more than $1,000 a week for behavior therapy for their

12-year-old autistic son.

In Indiana, and Michele Trivedi get the

same type of therapy for their 11-year-old daughter. But they pay $3,000 a

year and their health insurance covers the rest.

Two families. Two states. Big difference in

out-of-pocket costs.

If autism advocates get their way, more states

will follow Indiana's lead by requiring health insurers to cover intensive

and costly behavior therapy for autism.

In the past two years, six states — Texas,

Pennsylvania, Arizona, Florida, South Carolina, Louisiana — passed laws

requiring such coverage, costing in some cases up to $50,000 a year per

child.

The powerful advocacy group Autism Speaks

has endorsed bills in New Jersey, Virginia and Michigan and is targeting at

least 10 more states in 2009, including New York, California and Ohio.

Other states, including Illinois, have

similar bills in the works but aren't working directly with Autism Speaks.

" This is the hottest trend in mandates

we've seen in a long time, " said J.P. Wieske, a lobbyist for an

insurance coalition that argues that these state requirements drive up

insurance costs for everyone. " It is hard to fight them. "

For lawmakers, voting against these measures

means voting against parents who are struggling to do the best for their

children.

Parents tell moving stories about how

behavior therapy works better than anything they've tried. In two states,

bills got nicknames like " 's Law " and " 's

Law, " so voting against them was tough.

Arzu Forough of Kirkland, Wash., who is

pushing a bill in her state, credits behavior therapy for teaching her son

Shayan, at age 3, to make a sound to ask for a drink of water. Now 12, he

is learning to converse about his favorite food and music, and to talk

about his frustrations rather than throw tantrums.

Trained therapists, using principles of

applied behavior analysis (ABA), created a system of rewards to teach

Shayan these skills. As a preschooler, he got a piece of cheese when he

said " bubba " for water. Now a therapist rewards him with tokens

when he responds in conversation. He uses the tokens to " buy "

privileges like going for a car ride.

Shayan's improvements are a welcome relief

to his mother, who once called for police help with her out-of-control son

while she was driving.

" I pulled over to the side of the

road, " she said. " I had to call the police to drive behind me so

I could drive safely home. "

The Foroughs have health insurance, but it

doesn't cover Shayan's therapy. Although they both work full time, they

must live rent-free with her elderly mother to be able to afford his

treatment.

Meanwhile, the Trivedi family of the

Indianapolis suburb of Carmel, get 25 hours a week of behavior therapy for

11-year-old Ellie. They contribute co-pays and a deductible, totaling about

$3,000. Insurance pays the rest, about $47,000 a year.

Michele Trivedi is an autism activist. She

fought for years after a vaguely worded 2001 Indiana law required coverage

but insurers still refused to pay for ABA. Finally in 2006, she helped

convince the state's insurance commissioner to issue a bulletin spelling

out what was expected of insurers.

" It's no longer acceptable that blatant

discrimination against people with autism occur, " Trivedi said.

Autism is a range of disorders that hinder

the ability to communicate and interact. Most doctors believe there is no

cure. An estimated 1 in 150 American children are diagnosed with it.

Supporters say behavior therapy has decades

of research behind it and can save money in the long run by keeping people

out of institutions. Researchers agree, but say much remains unknown about

which therapy works best for autistic kids, whether long-term gains can be

claimed, and whether it works with older children.

Some states require behavior therapy

coverage up to age 18 or 21. But the scientific evidence for ABA is

strongest for the youngest, ages 2 to 5. Some researchers have reported on

individual children with autism who no longer appeared disabled when they

reached school age.

The most rigorous studies, though, show

mixed results. A study published in 2000 showed that preschoolers who got

intensive behavior therapy had greater gains in IQ than children who didn't

get the therapy. But there was little difference in the two group's language

development or the intensity of behavior problems. And the children most

severely affected by autism showed no comparative gain.

Another study in preschoolers, published in

2005, showed little difference between an intensive ABA-based program run by

therapists and less-intensive therapy from parents; children in both groups

improved.

When it comes to older children, the

research is sparse, said Tristram of the University of Rochester

Medical Center in New York, who co-authored the 2000 autism study.

" You could make a decent case for the

little kids up to 6 or 7 that (insurance mandates) would be

appropriate, " said. " I think it would be hard to make that

case for older kids. "

Another autism researcher, Schreibman

of the University of California at San Diego, said " fly-by-night "

behavior therapists could defraud insurers with ineffective therapy.

" I would like to see insurance cover

this kind of intervention because it's documented to be effective, "

she said. " But insurance companies have every right to monitor whether

it's working. If it's been two years and there are no gains, an insurance

company should be saying, 'What are we paying for here?' "

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