Getting Things Covered: The Insurance Question
December 30, 2007 by Kristina Chew, PhD
Filed under Health
” ‘The bad news is, your child has autism. The good news is, it’s treatable. The bad news is, you can’t afford it,’ ” said Betty Lehman, executive director of the Autism Society of Colorado.
“All of our school districts are independent,” Lehman said. “They don’t share resources; they don’t share information. The wheel is reinvented in every single school district.”
“I even felt guilty taking a shower.”
The third quotation is said by Jill Tappert, whose family is featured in an article, The Fight for Autism, in today’s Denver Post. Tappert’s 4-year-old daughter, Abby, is autistic; the Tapperts successfully sued their health insurance company, Anthem/Blue Cross, to cover ABA therapy—which they say cost $110,000 over two years—for her. The Denver Post notes that Abby Tappert and other autistic children have benefited greatly thanks to educational therapies, especially ABA. Some of the other “dizzying array of options” are noted, including those involving complementary and alternative medicine, such as special diets and hyperbaric oxygen therapy.
The main angle of the Denver Post article is that the “fight” against autism is twofold: Families must (1) “struggle to free their children from the grip of the mysterious disorder” (autism, that is, is conveyed somewhat as a terrible thing that one must “liberate” a child from) and (2) figure out how to pay for bills. The quotations from Betty Lehman and Jill Tappert capture what a lot of people feel, and why many families are more than interested in measures to provide insurance coverage for therapies for autistic children. Autism Speaks offers 8 arguments for insurance coverage; Autism Bulletin, by Michael Goldberg, a parent of an autistic child, often has updates about insurance.
I tend to say that providing my son with the full range of services and supports that he needs helps him to achieve his full potential: Autism is a lifelong condition and my son will always needs support. And Charlie, like many other autistic children, has (thanks too to all the teaching he has received) done better as he has gotten older—and that’s very good news, too. Is there a way to argue for more insurance coverage for services and therapies for an autistic child without saying that these therapies etc. will “free a child from autism”?
Exactly, m’am. We all are born with potential. Our parents’ job is to help us live up to that potential, and for children with autism, that can mean getting some assistance in the form of therapies. But the goal is not to free us from being who we are.
I do find that potential (rather than cure) is a tough sell in trying to get resources of any kind, unfortunately, while people think of autism as “mystery disease x”. I’ve tried to work that out in the past, and it’s a fine line to walk in terms of effective motivation (usually, it seems, if it was effective it was taken the wrong way, though I had other compounding issues).
Cliff
Kristina:
I am a dad of an autistic 14 year old – boy. I have been involved in autism education – helped found a school for children with autism – Oak Hill School – in Marin City CA.
I am also the CEO and cofounder of two autism (software) learning companies that are merging – animatedspeech.com and teachtown.com.
With the cost of educating our kids being what it is (horribly high), I believe there is an (important – very important) place for software solutions to enable our children to achieve (MORE than) their potential.
Where do you think software and technology fit in?
Not connected to your latest blog but you are obviously someone who cares and has a bird’s eye view.
Also – don’t you think insurance should cover software that extends what a therapist does?
best
Dan Feshbach
Dan@animatedspeech.com
Thanks so much for telling me about your software–I have heard of teachtown but not (until now) of animated speech. I have to think about your questions—my own experience with using technology and software for my son is bounded by the fact that he has not been interested in the computer at all until the past year. I do think that teaching him to type would be a wonderful way to increase his communication possibilities (Charlie can speak, but minimally) and the computer provides an excellent resource not only for skills that he might use later in life, but as a digital repository for the music and photos that he loves (many a CD and DVD has been scratched in our house). Thank you so much and I will be in contact—best wishes—-
Dan,
I think that technology could be very useful, esp. since my daughter was able to learn and demonstrate skills on the computer that were very difficult in person. I have also noted that there is much interest in such products and it seems to be on the upswing.
I have some experience with TeachTown, as well as Headsprout, Funnix and many of the other special needs software packages and products. I may also get in touch since I think that the integration of technology as part and parcel of programmed instruction may not be getting as much consideration as it could, and I am interested in the potentials of coverage by insurance. Thanks for highlighting your company and raising the questions.
Now I am looking at the Funnix website…..
Thanks for these comments. I had not seen Funnix before – I am checking it out. HeadSprout has excellent software and is a great company – I am interested in what software you found to be most effective for your child or had heard “worked” for autistic kids.
There is a big difference between reading software and software designed for children with autism for language learning and communication – enabling our kids to put words together and retell experiences they have – the classic question- “what did you do in school today ?” Autistic children frequently can’t answer – we are building software and learning strategies that are designed to help our kids learn to retell a story about their lives – or retell something that was told to them – isn’t that a big part of school and learning. I could go on about this.
If you are ever interested in evaluating/checking our software for you child let me know – I would be very interested in your experience with either TeachTown or Animated Speech or anything you have “heard” about our software – always trying to make it better for our kids
dan@animatedspeech.com
Thank you — we’ve tried Headsprout (we move slowly) and have done the sort of story-telling exercises with story cards (pictures). My son has a lot of difficulties tracking visual stimuli and also difficulties identifying drawings—-he does best with photos. I’ve been looking at the Animated Speech website: Does it contain photos or drawings? thanks much.