Insurance Companies Refuse Autism Coverage

Total Cost For A Child Can Reach $5 Million, But Few States Mandate Coverage; Is Change On The Horizon?

(CBS)  An estimated one in every 150 children in America has autism and the number of reported cases is growing.

The total cost of caring for an autistic child can reach a staggering $5 million.

Parents are increasingly demanding that insurance companies cover the newest treatment. CBS News correspondent Thalia Assuras visited one such family in Virginia.

At 7 years old, Tristan Oldham is the big brother in this rambunctious trio. A couple of years younger is Gareth - bubbly and playful until he was two.

That's when "he slowly stopped playing. He would sit in a corner and chew on his shirt and play with the shadows," said mother Cassandra Oldham.

Gareth was diagnosed with autism. Nine months later, as Cassandra and Bill Oldham struggled to cope with Gareth's condition, they suffered another blow. Their third child, Korlan, is also autistic.

"I can't even describe it in words really. Just pain. Pain. Gut-wrenching more pain," Cassandra Oldham said.

The emotional anguish was multiplied by financial stress.

Intensive, one-on-one behavioral and speech therapy called "applied behavior analysis therapy" or ABA helps the boys. But it costs up to $7,000 a month per child for the recommended 40 hours per week. The Oldhams struggled to pay even half the amount.

"Which child do you choose? We don't have enough money to pay for therapy for both of them," Cassandra Oldham said.

The Oldhams have insurance, but not for autism therapy because Virginia isn't one of the seven states that mandate coverage. Businesses say adding autism to the list is too expensive.

"Prosthetics, mental health, stress, hypertension: all of these things lead to a cumulative effect that runs the risk of putting the insurance out of reach for the average business person and the average employee working for that person," said Hugh Keogh of the Virginia Chamber of Commerce.

Cassandra Oldham and state Delegate Bob Marshall don't buy it. They are pushing legislation that would force insurers to cover ABA, and say the costs of a policy would be minimal - somewhere between $2 and $4 a month.

"There are real children whose lives are going to be destroyed because we are acting indifferent to them. That's not a moral response," Marshall said.

But in tough economic times, states like Virginia are trying to figure out how to do the most good with fewer resources.

"Ii have a lot of fear when I think about the future and where my kids will be at," Cassandra Oldham said.

They've thought about moving to a state where their boys can get all the help they need.

[mjpaluszek]

Here's something that you show know about, ties-in, will help. It happened yesterday. I'm working with Rethink Autism a company in NYC that launched the first website with videos of educational (academic, social, emotional, language, motor, play and daily living skills) developmental teaching exercises, a curriculum and assessment for autism treatment and care (that helps parents and caregivers to visually see how to conduct lessons at home with their children). Hundreds of these lessons are on their website. The videos are reviewed and edited by two giants in the autism field, Jamie Pagliaro formerly of the NYC Charter School of Autism and Bridget Taylor of the Alpine School in NJ, who are committed/staunch advocates of applied behavioral analysis (ABA) therapy (the only scientifically-validated treatment for children with autism). Due to the tremendous need for effective and affordable services, I want to give out the link to the web site www.rethinkautism.com/ To see how it works click on the button in the blue box (with the woman and child). The cost is $125/month which is roughly the cost of one hour of therapy by a professional ABA consultant. This includes full access to the hundreds of video-based lessons and trainings, assessment tools, scheduling, data tracking, progress reporting, and access to email support from trained therapists at the company.

[amandacox22]

There are many misconceptions about Autism, and I see many of them displayed here.

First of all, my Autistic son was not given the "autism" vaccine. We held off on vaccinating him and his siblings specifically because of the Autism controversy. However, he is severely Autistic.

Normally parenting skills do not work with these children, and ABA needs to be administered by a trained professional. Studies have shown that it is only effective when worked on at least 30 hours a week. This is a strain on the entire family, as these people are in your home all the time, and it is not because we are lazy parents. If we could meet this need ourselves, we would.
To those who think the case in this article is rare....sadly, it is not. Our private insurance does not cover services, nor does it for the more than dozen parents I know with Autistic children on HMO plans. Even the services we should receive through the State Health dept. have to be fought for, and even then children go untreated.

Being the parent of an Autistic child is extremely heartbreaking, and the comments by people here do not help. Perhaps you should spend some time around an Autistic child before make sweeping judgments about them and their families, who try so hard to care for them and give them a normal life.

[extraordinaryboy]

When these parents figure out which state they are moving too that has the services and insurance covers the services please post here. I would love to know where that is...

[bptdude]

Nobody commented that the rate of Autism is staggering and growing. It would be wise for the federal government to begin an emergency study of why and what to do. This could even be funded by the insurance companies, who could save a lot of money in the long if there are meaningful results.

But, what do I know, I was born with Autism?

Compassion and empathy is represented in several of these responses. A better question might be: "what if I had a child with this disorder"? What would be the responses then?
"Cherry picking" by insurance companies is not within the scope of compassionate people, what is the expression: "There, but for the grace of God am I"
An insuranced company's denial of any sickness or condition should not be permitted!
Herein is an argument for a governmental operated insurance program. It is time for we citizens go get behind our President's leadership in this most important area of quality of life.

Compassion and empathy is represented in several of these responses. A better question might be: "what if I had a child with this disorder"? What would be the responses then?
"Cherry picking" by insurance companies is not within the scope of compassionate people, what is the expression: "There, but for the grace of God am I"
An insuranced company's denial of any sickness or condition should not be permitted!
Herein is an argument for a governmental operated insurance program. It is time for we citizens go get behind our President's leadership in this most important area of quality of life.

[vhammon]

The percentage of children with special needs of one kind or another is pushing about 20% of our children. The cost of special education averages over $20,000 per year, with some children costing states upwards of $100,000.

When are WE going to grow up and start focusing on prevention. WE know that we are pumping toxins into our environments daily. Many of the over 30,000 in new pharmaceuticals that are used in nearly all household products have never been tested for their combined impact, for their impact on developing fetuses, even though some researchers have found tiny trace amounts to be endocrine disruptors that impact both potential intelligence and reproductive ability.

Schmucks that WE are, we're easy prey for industries that threaten cutting jobs IF they are forced to make quality products that do not handicap our children for life. How about DEMANDING a safe and healthy environment for all of us. Are we really such industrial dodos that we can only make money by ignoring the impact of industry on the environment and our health? I'd like to believe that America has the creativity to come up with new products that make a profit for businesses AND avoid contaminating the air we breathe, the water we drink, and the food we eat.

[aChangeOfIdeas]

by cs4466 June 21, 2009 10:29 PM PDT
"Their third child, Korlan, is also autistic."

<Amazingly ignorant. STOP HAVING CHILDREN YOU STUPID, STUPID people!>

OK, #1, read the article. The third baby was born nine months after the second child was diagnosed. The first child is not autistic. My guess is that they were pregnant before they really knew the issue with the second.

#2, although they are looking at a variety of related genes, it's not like having one kid with autism is automatically going to make the rest of their kids autistic. Afterall, their first kid was normal.

And insurance companies cover what they feel like covering. When 25 year old insurance "sales people" with only three years at the company are making six figures and being treated to company paid vacations in Hawaii (this is someone I know, I'm not making it up) I have to question their ability to even run health insurance as a business. It seems like their way to run their own country club.

[babooph]

The insurance company does not refuse all payments-the multi million dollar ceo salary ,private jets ,luxury outings are cleared very fast ,no questions asked.

[didserve]

Get Insurance out of Health Care!

[RLS1024]

Then what?

[rhs648]

Too many people think that universal health insurance or national health insurance will cover everything and solve all of our problems. Do people realize that it took around 40 years to add a prescription benefit to medicare and that was done under President George Bush? Recipients of health care through the Veterans insurance program and medicaid often complain that the don't receive the best care under those programs. Even some military personell complain that their care is sometimes inadequate. These are programs administered by the government that have been around for years. Be careful of what you wish for.

[SusanStoHelit]

Universal health coverage would be a good start.

That said - I think this article is kinda disingenuous - 40 hours a week of therapy? What are the parents doing - nothing? Most types of therapy I've seen involve the parents, you have some time with the therapist with the kid, and they give the parents homework to continue the theme. Every other day should be plenty with that. I think they're trying to exaggerate the difficulties here.

I say this as someone with a child receiving therapy - for a far more minor problem (speech delay) - and I get 1 hour once a week - the rest is me and her father at home. This is a far worse problem - but I just can't imagine 40 hours a week being useful even - no way is all of this something the parent completely cannot do even for a day or so on their own.

[salmoc44]

50% of Republicans support a public health plan.
Even more Democrats support a public health plan.
The fact that this will probably not happen just shows us who really runs America. It's not the people.

[cs4466]

"Their third child, Korlan, is also autistic."

Amazingly ignorant. STOP HAVING CHILDREN YOU STUPID, STUPID people!

[SusanStoHelit]

They didn't know that - autism wasn't diagnosed until he was 2 and several months. So - they are not the stupid ones. People who cannot read and look for excuses to bash others - that's the stupid people.

[cs4466]

Right, Susan. What's the reason to push out babies on the nose at 9 months? Push out one, start another. A little common sense... wait a year or two then have another so that you don't run into the same problem these people did. It's just common sense - something many, many parents simply do not have.

[aldon62]

One of only seven states? Autism is a major disability, what's wrong with the other 43 states?

[fred-mertz]

As long as the goal is profit, neither the health insurance industry nor the health care industry will ever truly work to improve the health of this nation and its people. Universal healthcare is not only a right, it is also a requirement.

[YCantWeAllGetAlong]

Not only is the ignoring of the needs for Autistic children tantamount to addressing this growing problem, the cost of this ABA therapy, available only to the rich, is disturbing. People want to ignore this issue and it's not going away, ever.

[incog-nito]

We need universal health care now.

[riob678]

Let's first define 'universal.' Does it mean every person legally residing in the US would be covered? Would those here illegally, but gainfully employed be covered? Or, would only those who are US citizens be covered. Second, about scope of the coverage. Will every disease, syndrome, medication, herb, licensed practitioners of all sorts, assistive devices such as corrective lenses, hearing instruments, prosthetic limbs, cosmetic procedures, ad infinitum, be covered. Third, by what means is the enormous expense of a universal program going to be funded?

[SusanStoHelit]

We do indeed.

Universal health care, like every other civilized country has had for decades. Covers all those here legally, for appropriate medical care, selected by scientific and medical standards that determine what treatments are the most cost effective solutions to diseases, what is a necessity, and what is a luxury (plastic surgery for a pretty nose is a luxury - plastic surgery for a deformed nose causing breathing difficulties is a necessity).

There is no enormous expense - in every country that has enacted this, their costs are drastically LESS than ours - even while our health care patchwork covers only a fraction of our citizens and theirs covers everyone. Unless Americans are somehow considered to be that much stupider than EVERY OTHER CIVILIZED NATION - I think we can manage to do the same thing. The costs will be lower - we'll save money that currently goes to pay insurance executives to find more new ways to deny coverage.

[dartplayer501]

I'm all for universal coverage and/or doing away with health insurance companies, however, National Health is not free. In the UK, the NH is paid for by "National Insurance." This is essentially a 10% tax taken straight out of your paycheck. Personally, I don't mind donating another 10% if it were 100% going to keep hospitals and doctors in business; but I imagine I would be in the minority on that.