Parents of autistic children fight for treatment in an
unforgiving market
Therapy costing up to
$40,000 a year aggravates insurance providers, whose refusal to cover it can
leave parents struggling
 |
ABA and OT Therapy were the only solutions to the pain
Nick experienced when he hear loud noises. |
Rob Gorski is a
blogger and the father of three boys – Gavin, 14, Elliott, 8, and Emmett, 5 –
all of whom are autistic. Gorksi remembered the
multiple letters to his home in Canton, Ohio that told him that one of his sons
could not renew his health insurance for a popular autism therapy because the
insurance officials decided treatment was no longer necessary.
“One time, we got a
letter for Emmett that said he was never going to learn,” said Gorksi. “Who are
you to tell me that my son isn’t going to amount to something?”
So he turned to his
blog, Lost
and Tired, a frank and vivid chronicle of caring for three
autistic boys. “I raised all kinds of hell,” he said. “I started using my blog
to fight. Sometimes it took weeks and months to get the approvals.” Things have
changed since then, he added. “Now, it’s automatically renewed.”
It shouldn't be such a
struggle, he thinks. Gorski’s children are on Medicaid and, as a result, should
be insured for therapy. “People think, 'You’re on Medicaid, you’re okay' – but
you’re not,” said Gorski.
Gorski's struggle is a
common one for parents of children with autism, a growing cohort in the United
States. The number of children with autism has been rising; the latest numbers
from the Centers for Disease Control and Prevention estimate that 1 in 68
American children have autism.
A 2006 report by the
Harvard School of Public Health said it cost the US $35bn to care for people
with autism through their lifetime. In 2012, the cost leaped to $126bn,
according to Autism Speaks, an advocacy organization.
Insurance coverage
isn't keeping up with the demand, and parents of children with autism often
find themselves mired in administrative paperwork and vast yearly expenses.
Although the Affordable Care Act requires insurance companies to cover
behavioral health, it allows the states to decide the details, including the
extent of coverage and hours of therapy. As a result, coverage for autism
varies from state to state, and even plan to plan.
Parents and advocacy
groups argue that children with autism deserve full coverage, just as those
with any other medical condition. But a common autism therapy –applied behavior
analysis, or ABA – is a sticking point. While applied behavior analysis is
widely accepted as one of the most effective treatments for autism, it is also
one of the most difficult to get insured.
ABA is based on the
science of behavior and uses one-on-one interaction to teach, communicate and
effect changes in the behavior of autistic children. That takes time, from 25
to 40 hours a week of one-on-one therapy depending on the severity of autism.
It also usually lasts for years, often starting when the child is as young as
two. It can also become vastly expensive, often into five figures a year, which
creates a struggle for middle-class families.
“Much of the expense
can be directly related to the intensity of the treatment,” said Matt McAlear,
an ABA therapist in San Francisco, adding, “while there is not much we agree on
in the autism community, we do agree that autism is a life long disability and
that the earlier we can start intervention, the better the long-term
outcomes." Autism itself is a spectrum of disabilities –it varies
from people with mild social and communication difficulties to those who don’t
speak at all. Insurance companies say that since autism includes a variety of
conditions, applied behavior analysis, too encompasses an array of treatments.
And this, they claim, makes it difficult to promise full coverage. The
insurance companies don’t dispute that ABA helps, but they say research hasn't
proven ABA’s efficacy.
“Insurance coverage is
focused on those treatments that are medically necessary,” said Rhonda
Robinson, a health consultant and the chief medical officer at UnitedHealth
Group. Medical necessity, by definition, refers to any health service that is
“appropriate” for evaluating and treating a given condition.
Insurance companies,
Robinson explained, determine medical necessity through research that clearly
defines the population and documents the treatment’s efficiency and durability.
Is it helping? How long will it’s effects last? ABA research, she said, doesn’t
meet many of these criteria yet. “It’s not quite there but it’s getting there,”
she added.
The problem has
already drawn opponents – and lawsuits – against the insurers. “There has been
enormous, long-standing discrimination against people with developmental
disabilities by insurance companies,” says Eleanor Hamburger, a Seattle-based
attorney who has brought class action suits demanding autism coverage.
It also creates a
growing class of frustrated parents. Jennifer Sheridan, the mother of a
nine-year-old autistic son, Charlie, is one of them.
“If the data shows
that your child is not progressing, they’ll cut you off, and if your child does
better than expected, they’ll cut you off then too,” says Sheridan. “So you
must sit right on average.”
“Some people are good
responders, some are not,” said Hamburger. How long the treatment takes
shouldn’t matter either, she argued, because, “If insurers don’t cap services
based on age, why should they cap mental health services?”
$85 an hour for 30 hours a week, every week of the year
Sheridan remembers the
day she realized she could no longer afford therapy for Charlie. It was
Christmas.
“Frankly, we couldn’t
keep up any longer,” she says. Charlie, a lanky kid with curly brown hair, was
diagnosed when he was two-years-old. Since then, Sheridan and her husband,
David, have spent $15,000 a year on average for applied behavior analysis.
Families such as the
Sheridans, who don’t qualify for Medicaid and cannot find insurance plans that
cover ABA, are struggling to pay out of pocket. Charlie’s ABA therapy
approximately cost $85 an hour. He was prescribed 30 hours of therapy every
week. But his parents couldn’t afford to pay for more than eight to 10 hours.
“We never had that
kind of money,” says Sheridan. “We had to slowly taper off as the years went
by. It just got less and less because we couldn’t afford it anymore.” Last
year, they tried giving him the least amount of therapy and it cost them
$6,000.
“And that’s low,” says
Sheridan. “One year, we spent $18,000. Many families spend $20k, $30k, $40k and
up. It depends on how much credit you can get.”
Charlie stopped
therapy in January. He hasn’t been to a session since.
“It breaks my heart
that I can’t get him any more therapy this year,” says Sheridan. “But we have
got mortgage payments. We have got car payments. The amount of debt we have
incurred to pay for therapy almost matches our mortgage payment.”
The Sheridans live in
Nashville, and Tennessee is one of the 14 states that are yet to pass
legislation mandating state insurance plans to cover autism therapy.
The Sheridans are on a
self-insured plan paid for by David’s employer, T-Mobile, which puts them in an
unusual position because self-insured plans are federally regulated and not
governed by state-level mandates. While many companies, including T-Mobile, pay
for autism-related therapies such as those for speech, not all of them pay for
ABA. They aren’t required to do so by federal law either. Even if Tennessee
were to pass a law mandating coverage for autism, that wouldn’t apply to the
Sheridans unless the federal government passed a similar law.
'Nothing you say will matter. I have no way to help him'
But that doesn’t deter
Sheridan, who is a strong local advocate for Autism Speaks. “What we are hoping
is that we’ll get this passed across the country,” she said. Even if the state
laws don’t help her, she added, they would help families like hers. And
eventually, she believes, the federal government will do the same.
Sheridan, meanwhile,
is struggling to help Charlie without his therapy. For the most part, she said,
he is doing okay. Her “little blur”, as she likes to call him, is still active.
He still loves watching YouTube videos of either elevators or tours of people’s
homes.
Charlie was
home-schooled for years, Sheridan says, because he couldn’t tolerate the noise
or the number of people in a classroom. Now he goes to public school. “He
participates in Chinese class, in gym class and math is his strength,” says
Sheridan. “ABA did that for us.”
He is popular at
school where, Sheridan says, the girls fight over who gets to be his “helper”.
He has friends who invite him to birthday parties. Charlie goes but his father
always goes with him.
But he still doesn’t
know how to cross the street. “He can’t go on the sidewalk by himself,”
Sheridan says. “I need someone who can understand his reactions to a street
corner. I can’t look that up [online].”
She’s also unsure of
what upsets him. When they are driving and she is forced to take a detour, she
said, Charlie starts screaming. “I don’t know what’s setting him off,” she
said. “Nothing you say will matter. I have no way to help him. He’s verbal but
he’s not conversational.”
She worries that
things will get worse as he gets older – and stronger. His head already reaches
up to her nose. “He’s taken a swat at me but because of [applied behavior
analysis] we figured out how to redirect it,” Sheridan says. “But he’s getting
bigger, too big for me to handle him. When the hormones set in … that’s what I
am worried about.”
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