Saturday, November 22, 2008

Insurance coverage: salvation or harm for autistics?

One of the ongoing activities that autism advocates (people trying to fight for certain perceived benefits for autistic people not michelle dawson's rather ironic use of the term) have been engaged in as of late is seeking insurance coverage for various treatments that are related to autism. These include ABA, speech therapy and occupational therapy. One of the impetuses for these treatments is that even though under the IDEA parents of autistic children are in a position to obtain these treatments at the expense of local school districts, the options are not always tenable. School districts, for obvious reasons are often recalcitrant about paying for these treatments and in special ed law, as in other areas of law, the statement "free and appropriate" education is open to interpretation.

One of the problems with pursuing legal recourse against school districts is the landmark supreme court decision in the Rowley case in which it was determined that appropriate did not necessarily mean best. There are certain parents who don't understand this concept. One of the more prominent of these is blogger Kristina Chew of the autismvox blog. She has consistently stated how she believes that she is entitled to the best educational opportunities for her son at taxpayer expense, even though the supreme court has nixed this option. Sometimes special education lawyers advise the parents whom they represent to never use the word "best" when asking for services from the school districts for their children. This might make it hard for a parent, for example, to receive 40 hours a week of ABA for their child, because less hours might be deemed appropriate. Then when the coin flip probability of complete normalcy that has been promised with this treatment is not obtained for the child by the time they are 7 years old, then the behaviorist excuse of not enough hours can be employed. Also this is not to mention the problem of costly law suits and having to pay an attorney thousands of dollars up front in some instances for the dream of normalcy and the child becoming a productive member of society not having to live in the dole as an adult and being able to function in society. Nor to mention the conflicts the parents have to go through with the school district and the work of having to have an IEP. Often, it is the well-to-do that have these options available for them, having both the money and sophistication to employ legal counsel to pursue their agenda, and the less affluent being left out in the cold.

One perceived way to circumvent this misery is for medical insurance to pay for these treatments instead. There would be no IEPs, no costly attorneys (or at least in less instances). All the parent with medical insurance has to do is file a claim with the insurance company and come up with a percentage co-payment. If they belong to an HMO such as kaiser permanente, they could have tens of thousands of dollars in ABA therapy paid for nearly in full.

Autism speaks and other organizations have made a push to have coverage for autistic children. There have been pushes in Virginia, south Carolina and Pennsylvania for at least limited insurance coverage for these treatments for autistic children, that until very recently insurance companies would not pay for because the treatments were either considered experimental or educational rather than medical.

As I have written in the past, the efficacy of ABA is dubious. Even though Lovaas and his disciples such as Tristram Smith have been given top priority NIMH funding to study adult outcomes in the children in their famous 1987 study, they have yet to publish these though they have presented data informally at conferences claiming some sort of effective adult outcomes. But still there is no evidence that children who undergo 40 hours a week of ABA will be able to be gainfully employed or be successful as adults. Ditto for speech therapy and occupational therapy. I was a nonverbal autistic in the late 1950s who fully recovered my speech with the only intervention being psychoanalysis. Even if an autistic child who undergoes speech therapy recovers their speech this does not necessarily mean there was a causal relationship between the speech therapy and the child talking by the time they are five years old so the financing of these treatments via insurance may not accomplish much.

What is most worrisome of all to me is that autism may be considered a pre-existing condition by insurance companies and HMO's such as Kaiser who often cherry pick patients based on lack of pre-existing conditions. Until recently autism would not be considered a pre-existing condition. A parent who wants to get medical insurance for their autistic child to treat conditions not related to their autism would not have a problem getting the insurance. But what if this insurance legislation is passed in a lot of states. What if the cap on treatments becomes higher than $50,000 after even more intensive lobbying by autism speaks and other advocacy organizations? Does this mean that Kaiser and other HMOs will start excluding families from coverage due to having an autistic child? Does this mean that if an autistic child gets leukemia, Crohn's disease or needs orthopedic surgery of some sort they will not be able to receive treatment? The answer would seem to me to be yes. Would this mean that parents of the children would be excluded from medical coverage as well. This might mean that if the parent had a treatable medical condition they might not be able to get insurance because of their child's pre-existing condition of autism.

For this reason it seems that this insurance lobbying is not only more tears of toasted snow being cried by the parents of the children but also could provide great harm if the children are not able to have medical treatment that they need that is unrelated to their autism if they need for it to be covered by insurance.

Friday, November 14, 2008

autism speaks ensures journal articles of research they fund are available

There is now some good news among persons who are interested in free access to peer reviewed journal articles that report the results of autism research.
Autism speaks has announced a new policy They now have a policy where all researchers who receive funding from them have to put the resulting publications into pubmed central online archive within 12 months of publication. Access to these articles is free. This is a good deal for those who do not live near a biomed library like UCLA who otherwise might have trouble obtaining journal articles like these. Normally these articles can be purchased over the internet by interested parties, but the cost is often like $30 or more per article, which seems to me to be pretty steep just for a journal article. This will help disseminate information to those persons who are interested in autism and the research findings of those who receive funding for research from autism speaks. Autism speaks says they are the first nonprofit organization to implement such a policy. these articles are available at for those who are interested in these forthcoming articles as well as other free articles that are available.

I wish everyone from the government on down (or up depending on your point of view) would institute this policy. I live near UCLA so I can obtain a lot of these articles if need be. Of course it is always a hassle to xerox them and it costs like 15 cents per page at UCLA and you have to purchase this card to use in the machines. Due to my perceptual motor problems, I sometimes have trouble lining up the pages properly and it takes several attempts for me to xerox some of the article pages and get everything on the page.

UCLA used to have the Journal of Autism and Developmental Disorders on their shelf in the biomed library which I would browse on a regular basis. At one time, this publication came out four times a year. Due to the increased interest in autism research, the JADD now publishes something like eight times a year. UCLA no longer seems to have it on their shelves and this is a disappointment to me. My disability and other commitments make it hard for me to keep up with as much research as I would like to keep up with. Hopefully someday that will change and I will have more juicy tidbits to add to this blog. I think now UCLA has JADD and some other journals available online and maybe some day i will investigate and become a more regular reader of JADD and then some of the other journal articles.

Though admittedly autism speaks is a less than perfect organization, I applaud them for instituting this policy.