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, Sean 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
"Steven's Law" and "Ryan'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 Smith 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," Smith said. "I think it
would be hard to make that case for older kids."
Another autism researcher,
Laura 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?'"
The Council for Affordable
Health Insurance, the industry lobbying arm, estimates
autism mandates increase the cost of insurance by less
than 1 percent by themselves, but when combined with other
requirements make insurance less affordable.
Susan Pisano, a spokeswoman
for America's Health Insurance Plans, said the industry
has been wary of laws ordering a specific treatment
because when new scientific evidence emerges, the mandate
remains frozen. And she questions whether behavior therapy
is medical or educational.
The American Academy of
Pediatrics includes ABA therapy in its clinical report on
autism, but describes it as an "educational intervention."
"There has been an effort
to transfer the response to autism from school systems to
the health care system," Pisano said.
Nevertheless, some big
companies and the U.S. military are providing ABA-based
autism therapy as a benefit.
The U.S. military's Tricare
health insurance program not only covers up to $2,500 a
month for the therapy, but also recently expanded the
definition of who can provide it to make it more
accessible. And some self-insured companies, including
Microsoft and Home Depot, pay for autism behavior therapy.
Gaining insurance coverage
state by state is the top lobbying priority for Autism
Speaks.
"It's the No. 1 thing we
hear from parents," said Elizabeth Emken, the group's vice
president of government relations. "What's more difficult
than knowing there's an effective treatment for your
children, but you can't afford to offer it to them because
it's not covered by insurance?"
A new federal law requiring
insurers to make coverage for mental health conditions
equitable with other health coverage was tacked onto the
recent financial industry bailout package.
Autism Speaks applauds the
law, but says autism is not a psychological condition and
that the insurance industry has refused to cover autism
treatments in states with mental health parity laws on the
books.
"We hope it sets the stage
for the Congress and the next president to continue this
effort to end discrimination in the health insurance
marketplace," Emken said. "Whichever party is elected,
autism will be on the table and be a major point of
discussion. There may have to be a federal mandate."
