Mama can relate

Financial Struggles Plague Families of Children with Autism
MU study finds this area often overlooked, but has major consequences
COLUMBIA, Mo. – The information that a child has been diagnosed with autism often throws parents into an emotional tailspin. A new study from a University of Missouri researcher says most people don’t immediately consider the major financial struggles that follow. She suggests more outreach is needed to help families plan and cope with the profound financial life changes they may face.

 “As a parent, the diagnosis of autism upends your world,” said Deanna Sharpe, associate professor of personal financial planning in the MU College of Human Environmental Sciences and whose own son was diagnosed with the disorder. “It is important for us to hear the voices of families who have financial struggles. There is strong pressure to do everything you can for your child. However, there is a great potential for families to spend a lot of money on therapy or new ideas that may be ineffective. Careful evaluation of therapies is important.”
 Some of the costs include specialized child care, speech and language therapy, other types of one-on-one therapy, special interventions, and costly food or drug supplements. Applied Behavior Analysis (ABA), a widely respected and recommended behavioral intervention, can be expensive. This
 intervention requires children to work one-on-one with a trained therapist for 30 to 40 hours each week. In the study, some parents reported paying as much as $30,000 a year for ABA therapy. Parents whose child with autism was destructive also reported paying compensation and replacements costs for items that were destroyed.
Some families quoted in the study reported skipping meals to be able to afford therapy for their children. Others talked about robbing their future by depleting savings, emptying their 401K plans, selling stocks and even filing for bankruptcy. More costs are added to some families who need counseling and medication for themselves in order to cope with the stress of raising a child with autism, further straining the family budget.
 Sharpe says it is important to begin financial planning as soon as a diagnosis is made. She suggests financial planners need to help direct families to available resources and help them think seriously about the implications of spending all their retirement money on various therapies or having one parent step out of the job force to care for a child when other options could be available.
 “Autism has a startlingly huge impact on society,” Sharpe said. “We know early intervention can influence how well a child will do later in life. It’s a human capital investment that can prevent or reduce the need for public support when a child with autism becomes an adult. However, it is costly to obtain this intervention.”
The study – “Financial Problems Associated with Having a Child with Autism: How Financial Advisors Can Help” – won the Association for Financial Counseling and Planning Education outstanding conference paper award. The study was published in the Journal of Family and Economic Issues.  Dana Baker, University of Washington, co-authored the study.

6 Comments (+add yours?)

  1. Fashion Sensei
    Mar 03, 2008 @ 12:03:58

    I wish stories like this made front page news. The shocking discrimination of our kids is rampant when it comes to insurance or the schools.

    All the evidence is out there that early intervention works, but no one wants to help us out. Autism is just not looked at the same as other conditions.

    I know I’m preaching to the choir here. It’s just so frustrating!! I would love to see one big class action law suit or something to shake people up so we can get some help.

    I will be adding you to my blog surfer. 😀

    Have you seen the Wired article with Amanda Baggs? I did a post on it if you want to check it out.

    Have a great day!


  2. ronanjames
    Mar 04, 2008 @ 15:25:32

    So true! Something needs to happen fast. Funny that you mention the Amanda Baggs article! I was just about to do a post on that myself – still trying to wade through my thoughts on it.
    Thanks for adding me to your blog surfer…I’ll do the same!
    Take care!


  3. Fashion Sensei
    Mar 05, 2008 @ 20:29:19

    I went on to the Autism Speaks website and was appalled at how horrible these parents were to each other! If you check out their thread about Amanda Baggs, you will see what I mean. One person believes that she is not autistic and that it is because she did too much LSD that she is the way she is. I have no idea where he got his information.

    Do you do any biomedical for your son? I have been looking into it again and have an appointment with a DAN! doctor next week. I’m just feeling a little trepidations about the cost of everything. Our insurance does not pay for any of our Speech/OT and to add the biomedical fees on, just makes my head spin. Any advice?


  4. ronanjames
    Mar 05, 2008 @ 22:39:26

    Oh, man, I don’t pay attention to anything that people say in the negative sense online anymore. People are nuts! lol
    I did a post a while back on our biomed journey, it’s under History.
    We currently just watch his diet for dairy, but we are open to natural alternatives always. He does best with a “clean” diet…no junk, whole foods – good meat, veggies, fruit, etc. It’s hard to say the least, in our culture to stay away from the junkfood, and I can’t say that we never give him yukky stuff, but we pay the price for a day after! lol
    Get good referrals for a DAN! and use your gut when taking advice from any doc. You know your child best.
    HTH and thanks for your thoughts!
    : )


  5. Discoking
    Mar 06, 2010 @ 00:40:50

    Great Blog!……There’s always something here to make me laugh…Keep doing what ya do 🙂


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