Parents of autistic children fight for treatment in an unforgiving market

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

The Guardian April 22, 2014 http://www.theguardian.com/money/2014/apr/21/autism-children-parents-therapy-insurance-treatment

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.”