Wednesday, December 3, 2008

The Financial Burden of Autism. A new study tells the untold story we all face

The cost of autism in our household is never ending. From dental care (his first dental procedures at age 5 cost over $4,000), to medications (high co pays and some not covered by insurance), to non covered interventions and supports. It's expensive. This is not a new story...I will never forget my first call to my insurance company asking for help. I remember it so well I can repeat it word for word, so I will. Here goes:

Me: Hello I need a medical referral for my son
Insurance Co: Okay. What do you need a referral for?
Me: My son needs a referral to a speech pathologist.
Insurance Co: Why? What is the diagnosis?
Me: Because he used to talk, and now he can't talk. I don't have a diagnosis, that's why I
need the referral.
Insurance Co: Well without a diagnosis we can't make a referral.
Me: Well the diagnosis is HE HAS LOST HIS ABILITY TO SPEAK, isn't that enough.
Insurance Co: No mam, that is not enough, we need a diagnosis
Me: Well how do I get one without seeing a specialist?
Insurance Co: I don't know. You just have to have a diagnosis for me to help you.
Me: I was told that I should call my insurance company for the referral to a speech pathologist to find out what is wrong.
Insurance Co: No mam, I understand but that is not enough, we need a diagnosis
Well, I spoke to one person who said I should see a speech pathologist and get him
evaluated for Autism, that might be the diagnosis.

Insurance Co: Sorry, mam we don't' cover autism. I can't help you.
Me: You can't help me?
Insurance Co: No mam, we dont' cover autism and with that diagnosis speech would not be considered a medically necessary treatment.
Me: My son's lost of speech isn't covered because what? Helping him isn't medically necessary? Are you for real?
Insurance Co: I'm sorry mam I can't help you. Is there anything else I can do for you today.
Me: I just hung up and yelled and screamed and cried.

Eventually I found a speech pathologist and we paid out of pocket until I was able to get other resources and eventually my insurance company began helping. However, this is just one example of the challenges we face when seeking care for our kids, who have a diagnosis not fully recognized by the medical community. This new study speaks to that challenge and it's well worth the read.

Today I found this article and I had to post it. It speaks directly to a problem I dont' hear enough about, how we pay to help our kids when the systems don't recognize our needs as "medically necessary".


Study Shows Families' Financial Strain
From Autism

The Associated Press

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.
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.


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