Wednesday, December 3, 2008

Study Shows Families' Financial Strain From Autism

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.

Story link:


For we that are parents of children with Austism, this story falls into the catagory of: 'about time others figured this out'. Since we have not had anyone come forward to help with the creation and financing of the AutismBites Foundation (see AutismBites website link for more info: we have come to the conclusion that we will have to do it by ourselves. The process and grants to families in need will unfortunately be much slower, my goal is to start helping families this Spring.



Maren said...

Great article, do you mind if I link on my son's autism blog

saranordmann said...

I was re-reading your "autism x 6 FAQs" post. You said, "All of the children were born before we knew anything. We were first told that Bobby should be evaluated for a 'communication disorder' when he was 11 1/2, Mary, our youngest, was almost 5 months old. This was May 2005." Then you go on to note that you were also concerned about Sarah, who was 3.

I suppose that when people are in the middle of a situation, they can't see what other people do. However, didn't it seem strange to you that Sarah was still in diapers and not talking at age 3?

You've asked for input several times in relation to the blog. I would love to hear more about daily activities around the house, and the trials/tribulations of the children. Including pictures. Bonus points if the kids look really cute. I think the daily stories would really help other parents relate.

Chef Penny said...

I thought the same thing when I read it too! I just blogged about it too but what a waste of money. Prayers to you and your family.

Linda said...

I'm so glad I saw your SUV at Sam's's great to know I'm not alone in this day to day world filled with autistic adventures...your shirts are AWESOME!! My 17 year old son is my greatest gem in this world...he makes every day special...altho he is very high functioning I do things every day that put financial strains on us....but to me it's normal living I've been doing it so long...I hope and pray every day that I can love and support my family and still live and eat indoors!!...great site...KUDOS!!!

Dadof6Autistickids said...

"... didn't it seem strange to you that Sarah was still in diapers and not talking at age 3?"

No, our next oldest, Nephi, was just like her at that age. He was not out of diapers until 3 1/2 and did not have 2-3 word sentences until then as well.

Today he is in 4th grade at a regular elementary school. He has meltdowns a couple of times a week, but is fine otherwise.

So... we really didn't get concerned until she was at 3 1/2 and still not progressing.