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.

6 comments:

Autism Reality NB said...

Jonathan you stated:

"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."

And yet the AAP, NYSDOH, MADSEC Autism Task Force and US Surgeon General disagree with your assessment of ABA:

The American Academy of Pediatrics - Management of Children with Autism Spectrum Disorders 2007

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have
been significantly better than those of children in control groups.31–40

goooooood girl said...

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Anonymous said...

Autism Treatments via Insurance would only apply to small companies that do not self insure. Companies that self insure, the majority of all companies, would not be covered by the proposed law. Its almost a non-issue.

"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."

This approach to a child's education is commonplace and not specific to parents with a disabled child. Most parents want the best education for their child, regardless of what forms it might take.

All public education is at the "expense of taxpayers", which is also not specific to a disability. Football programs and facilities, a very expensive program for a school to maintain, is also at the expense of the taxpayer and not available to many disabled students. Should those programs be eliminated because it isn't accessible to other students? Schools finance a lot of non-sense for cultural reasons that have very little to do with their educational mission.

CS

jonathan said...

same old tape recording from harold doherty i see. Perhaps you can answer some of the concerns of lack of adult outcomes published by the advocates of ABA. still sort of curious why you could not have obtained more hours of ABA for connor in another canadian province or the united states also if this would have given him at least a coin flip probability of being able to function as well as a typical 12 year old.

jonathan said...

I was unaware of what CS is saying. I was under the impression that these laws that had been passed mandated insurance coverage for autism treatments. It means that a person has legal recourse now at least in some states against insurers or HMOs who refuse to pay thousands of dollars for ABA, speech, occupational therapy.

Yes, most parents want what is best for their kids that is only natural, but that does not mean public schools are entitled to give the same quality of education such as the harvard-westlake school in Los Angeles or other really swanky private schools give.

Legally, as I said in my post the supreme court has ruled that the word "appropriate" in the IDEA does not mean "best". Kristina Chew seems ignorant of that fact, though I have pointed it out to her many times. The education of developmentally disabled children is far more expensive than that of typical children with dubious results. You might be interested in reading my previous post on how half of all special education students have failed the high school exit exam in California. I do not believe that this is money well spent.

I am not all that into competitive athletics, but the schools providing these things allow for kids to have an interesting extracurricular activity and to do something they might excel at such as athletics if let's say academics is not their strong suit. Also, can lead to college scholarships for some of the more gifted athletes. Good athletic programs at the collegiate level at least bring in money from alumnus.

All of these are not really comparable to the ineffective special education programs and the futility that the IDEA law has shown in its more than 30 years of existence.

JediKnight2 said...

Adults on the spectrum have a difficult time being covered with an insurance plan. I have this exact problem, so until my parents can get the plan they've discussed once I turn 25 (which took them a while to grasp since my pathologist took forever to talk to my dad and me personally, even though I had to do most of the talking and fight my way through the whole session to speak up about everything, and I still can't tell if my parents know and understand everything), and until I contact Dr. Herman Fishbein to express my feelings of the pros and cons of the therapy programs I've been in- with the main con being the pathologist manipulating and controlling autistics' lives with their techniques, I'll continue to be controlled to some degree until my family realizes what the speech therapist's impact had on my childhood, something aspies never had to experience.

Once everyone understands, I can continue with my current speech-language pathologist who won't bother to tell the complete truth to my parents and would rather do everything in her power to manipulate what I want expressed to my parents, or I'll just have to see someone else or try neurofeedback.

Since my pathologist is THE ONLY person who knows the most about my disability from a first-hand perspective, and I was lucky to bump into her at an Asperger's support group, I'd hate to cut ties with her. I do well some days but my symptoms wax and wane the more sessions I attend, so if I do something 'autistic' and my parents don't understand, I'll get frustrated and can't always advocate for myself all because this ditz claims I'm an adult. She always contradicts herself and she would do a better job if I was hired to be her assistant while she works with her other clients. Oh but wait...no matter how hard I try to express my feelings in the best positive way to her, she doesn't understand and rarely ever let's me speak up. If I do get the chance to speak up, she'll come up with a way to win with her opinions so I won't ever be able to let my repressed feelings and experiences from the past be let out of my system- at least that's how it seems to me.

Then if I tell her I've repressed some things because I didn't have this therapy, she'll have the perfect excuse....."Oh, you never told me that." Well, gee whiz! How difficult is it for someone like this woman to grasp what I've been trying to express to her since Day One who's been giving me a hard time for not knowing how to use and apply some of her techniques I've been working on and others I still haven't gotten to yet which makes following the conversational skills she wants me to use while expressing myself to her about this kind of stuff impossible, especially when she treats me the way she does. Then there's other days she goes back to being very nice again and acts as if she really does understand me. I just hope not all pathologists are like her.