Study Shows Families' Financial Strain From Autism

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LINDSEY TANNER | 12/ 1/08 10:36 AM | AP

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CHICAGO — More than half a million U.S. children have autism with costly health care needs that often put an unprecedented financial strain on their families, national data show.

Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids' health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found.

"This is the first national survey that looked at the impact on families of having kids with special health care needs," said lead author Michael Kogan, a researcher with the government's Maternal and Child Health Bureau.

The results are from a nationally representative 2005-06 survey of nearly 40,000 children with special health care needs. These children have a broad range of chronic conditions, including physical and mental illness, requiring more extensive than usual medical care.

A total of 2,088 children with special health needs had autism, which translates to about 535,000 kids aged 3 to 17 nationwide, the study authors said.

The study appears in December's Pediatrics, being released Monday.

Autism typically involves poor verbal communication, repetitive behaviors such as head-banging, and avoidance of physical or eye contact. Affected children often need many more types of treatment than kids with other chronic conditions, including speech and behavior therapy and sometimes medication. Kogan said that may explain the disproportionate strain on their families.

Jacquie Mace, whose 12-year-old son, Austin, has autism, said the study presents a "very realistic" picture of the challenges affected families face.

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Mace said she spends "easily $15,000 to $20,000 out of pocket" yearly on supplies for behavior treatment she provides for her son.

She's still working to pay off a $7,000 bill for dental work Austin had last year. He has to be sedated and hospitalized for dental care because he can't sit still in a chair, Mace explained. Austin's health insurance doesn't cover any of it, she said.

Some states require insurers to cover certain autism treatment while similar proposed measures are pending in others, including Illinois.

Mace hasn't had to quit her job helping local families find autism resources, but knows of many parents who've had to leave work to care for their autistic kids.

She is divorced _ another common casualty, she said, of the challenges of caring for autistic kids.

___

On the Net:

Pediatrics: http://www.aap.org/

Maternal and Child Health Bureau: http://www.hrsa.gov/

CHICAGO — More than half a million U.S. children have autism with costly health care needs that often put an unprecedented financial strain on their families, national data show. Compared with ...
CHICAGO — More than half a million U.S. children have autism with costly health care needs that often put an unprecedented financial strain on their families, national data show. Compared with ...
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- TannersDad I'm a Fan of TannersDad 79 fans permalink
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Be the first to report. Autism and Healthcare twitter day December 23rd all day #HHS
Tom Daschele invited Tanners Dad / Tim Welsh will be the Autism / Healthcare Community
Discussion Host and Moderator. Sign onto twitter. Search for #HHS and post your comments
and answers to questions.

No prizes no games no tinsel Just a conversation for families fighting for children with
Autism. Be There Tues Dec 23 ALL DAY Obama wants to know.

http://www.causecast.org/member/tanners-dad

    Favorite    Flag as abusive Posted 10:20 AM on 12/19/2008
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We've found one thing that can at least chip away at the burden is pestering local agencies' reimbursement programs. It's often very little ($500 seems to be the limit in New York from a single agency), but it can help for purchases of everything from clothes and meds to transportation and even furniture. It's a matter of turning yourself into a paperwork wonk (and we the parents have nothing else to do, right?) and keeping original receipts. It's also a matter of our nation pulling out of this financial tailspin and getting some grant cash back to the people who can use it. I was surprised as Alex aged to find that these agencies have sort of taken over the function I always thought, as I was growing up, that the government had covered.

Until the big picture is addressed, at least this is something we can do now. While the agencies still have money.

I find these agencies across the country a lot for some other dream I'm chasing, and would be happy to help anyone run down one in their area. My e-mail is jeffslife.nete.net

    Favorite    Flag as abusive Posted 08:15 AM on 12/10/2008
- TannersDad I'm a Fan of TannersDad 79 fans permalink
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Tom Daschle, Here are Our Autism Healthcare Stories Obama reaches out to the families
Please tell the new President your story. Let the people be heard. We need this now. Thank You in advance.

We struggle with a healthcare system that does not support the hurting families. We get a diagnosis. We get kicked, kicked, kicked, and then kicked to the curb. Help now. Tell your story. Our window of opportunity is now!

http://www.ageofautism.com/2008/12/tom-daschle-her.html
http://change.gov/page/s/healthcare

    Favorite    Flag as abusive Posted 09:09 AM on 12/07/2008
- TannersDad I'm a Fan of TannersDad 79 fans permalink
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What can you do today...

If you are a parent... Love your child unconditionally. Do not let your child feel they are any less because they cannot communicate the way we do or look after themselves. Do not forget to look after yourself and your significant other. ( If you don't have one find one...There is someone out there for everyone. You deserved to be loved also). Join a church. Speak to your friends. Keep up the good fight.

If you are Friend... If you have resources please consider supporting Generation Rescue as they move the agenda towards services and support programs. If you do not have financial resources provide respite services... Babysit, go with a parent to the grocery store, or running errands. Be there to listen.

If you are in the medical community it is time to wake up and do something...
If you are in the insurance industry it is time to make the people responsible pay...
if you are in the media it time to tell the truth...
If you are in the government it is time act...
If you are in education it is time to educate...
If you are in a religious community it is time to rally the troops to support families...
If you are in the pharmaceutical industry it is time to pray...

People it is just time to deal with Autism....

http://www.causecast.org/member/tanners-dad/blog_posts/456

    Favorite    Flag as abusive Posted 05:05 AM on 12/04/2008
- gmlaster I'm a Fan of gmlaster 43 fans permalink

My son's autism has cost us $200.00 a week EVERY WEEK in speech and occupational therapy over the last three years. I know people who don't pay that much on their mortgage every month. To make matters worse, he's home from school every day at 2:30 and we spend two mornings a week at therapy, so nobody will hire me, even though I am set up to work at home. With doctors visits, the neurologist, and the fact that we are uninsured, this situation is a nightmare for us.

Most of the parents I've met who have autistic children are on public aid. It's literally the only way to be able to pay for the therapy, and you've gotta pay. Without it, your child could grow to adulthood unable to speak. It's horrible, understanding everything that's said to you but only being able to reply in gibberish. My son is six but has the vocabulary and speech of a three year old, and we're grateful. Just two years ago, he couldn't speak at all. To date, we've never held a conversation with him, and yet, according to his test scores, his teachers say he's the brightest child in his class. He's a genius, trapped in his own body.

Since health care is going to be a big initiative in the Obama administration, they need to put serious study into this sudden surge in autism and provide free health care for autistic children. It's a crushing financial burden.

    Favorite    Flag as abusive Posted 04:50 AM on 12/03/2008
- mom2luke I'm a Fan of mom2luke 8 fans permalink

Thank you, Huff Post, you just asked for off the bus stories stories about the Recession's Effects... I was wondering how many families with autism would write in....

Autism costs SO much in terms not just lost dreams for our child, but in unreimbursed therapy expenses (a year of ABA at the only level that has been proved to lead to "recovery" costs $35-45,000...and that does not include OT, speech, special diets, supplements, rx's)

...plus the opportunity cost in lost income of one parent who almost always must stop working outside the home to care for the child with autism...

..then there's the cost --personal and to society--of the stress, including an 80 percent divorce rate...though many couples stay together simply because they can't "afford" divorce and they can not stand to see their child and his siblings suffer any more (not necessarily a bad thing).

...yet insurance PAYS for the many vaccines we believe trigger the autism. sigh. see Huff Post 11/28 post by David Kirby.

    Favorite    Flag as abusive Posted 02:46 PM on 12/02/2008
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You are so right. My entire marriage fell apart because I decided to home school our daughter who was becoming suicidal at school. We went down to one paycheck and my husband was furious. He believed there was nothing wrong with her and that I was lazy and spoiling her. She was finally--FINALLY--diagnosed with autism at 15 after an attempted suicide.
She is now in a wonderful program at the public school designed for autistic teens. It's the first time I haven't had to worry about her when she is out of my sight. But I still have to just pick up little jobs here and there because of her appointments and the fact that she is sick or just emotionally exhausted and anxious so often and unpredictably. (She also has severe anxiety and OCD).
The psychiatrist--who saved her life---costs $120 a month and insurance doesn't cover it. Her drugs are another $100. Plus the cost of me not being able to manage a full time job and juggling two part time jobs.
It is really tough to have an autistic kid. She is delightful, intelligent, quirky and I would miss her if I was away from her for more than three days, but it has been a struggle.

    Favorite    Flag as abusive Posted 10:41 AM on 12/04/2008
- Liam I'm a Fan of Liam 5 fans permalink
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If you have a child with autism symptoms, I cannot suggest strongly enough taking them off all dairy products, using rice milk, soy milk or almond milk and cutting out all cheese and other dairy...

My son went from severely autistic to a normal boy struggling to catch up from two years of autism inspired developmental delay.

Casein (milk protein) and Gluten (wheat protein) seem to be a factor in a significant number of cases.

We mentioned this to our doctor, and the reply was "Yeah, I've heard that from several other parents", and I was thinking "then why the heck didn't you mention it to us, you quack?".

Seriously, when we took my son off of dairy (including all products containing dairy), he was a new boy in 36 hours. Literally. After two weeks, we took him off of wheat as well, and he's honestly showing no signs of autism at all any more.

If you're interested in more information, you can e-mail me at liamjohnson.netohnson.net.

Liam.

    Favorite    Flag as abusive Posted 10:06 PM on 12/01/2008
- mom2luke I'm a Fan of mom2luke 8 fans permalink

Liam your son is so fortunate that you pursued special diet. I too put Luke on Gluten/Casien free diet with good results --he said his first sentence the first week off dairy. We'ver persisted with special diet for the past SIX years ...plus spent well over $100,000 in ABA therapy (not reimbursed at all by insurance), but unfortunately, he still has autism.

Thanks for posting to get the word out about another success story, you're right, doctors need to ENCOURAGE parents to explore this option rather than discounting it because it has only been "proved" by mere parents, not "scientists" who demand double blind placebo studies...never mind that they are impossible to conduct.

    Favorite    Flag as abusive Posted 03:06 PM on 12/02/2008
- TannersDad I'm a Fan of TannersDad 79 fans permalink
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Again this study emphasizes the need to help families. I know in my case I gave up my corporate career to move home for support. Switched careers to be closer to home and then was laid off due to the financial crisis. I thought I was doing the right thing for our mental health and my sons medical needs. It turns out there are less services and he moved further down the waiting lists. Now his is 15,001 to get services in this area.
http://www.causecast.org/member/tanners-dad

    Favorite    Flag as abusive Posted 06:44 PM on 12/01/2008
- Topfeeder I'm a Fan of Topfeeder 35 fans permalink

They should do as John T. and Kelly P. do and deny that their kid has autism. Then their kid can be like his, degraded. Degraded children is the term Scientologists use. Autism does not exist. The children receive no therapies or specialized schooling.

    Favorite    Flag as abusive Posted 04:19 PM on 12/01/2008

Don't believe everything you read Topfeeder. Oh, it's 5:00, time for your meds.

    Favorite    Flag as abusive Posted 05:01 PM on 12/01/2008
- Topfeeder I'm a Fan of Topfeeder 35 fans permalink

Zenu called and said your mother unit should have had a pill too, an ru486.

    Favorite    Flag as abusive Posted 10:51 PM on 12/01/2008

Hopefully the people who are responsible for these crimes are forced to pay out of their own pockets to the families of these autistic children. They know who they are.

    Favorite    Flag as abusive Posted 02:56 PM on 12/01/2008
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