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.