Friday, June 26, 2009

New Jersey latest state to pass autism insurance reforms

I have just seen that New Jersey is the 14th state in the union to pass mandatory insurance coverage for therapies for autistic persons up to the age of 21. This is an interesting video on that subject:




Very sad. One person paying three quarters of a million for therapy. One person remortgaging their house three times. One of the assembly speakers Joan Voss, whose son has Asperger's, makes the guarantee that with this bill parents will be able to purchase therapies that will allow all autistic children to be functioning adults as she alleges her son has. Bob Wright, who started autism speaks, also has a few things to say on the matter. At the end of the video the statement is made that these therapies will allow autistics to become functioning adults. Where is the proof? What person with autism became a "functioning adult" whatever that nebulous term means through any therapy? To quote the old 1980's television commercial, where's the beef? Adult autistics are ignored and are invisible. I have written about this in my essay The invisible autistic adult. At the time I wrote it some years ago, I was not aware that the children in Lovaas (1987) were adults-currently in their late 30s, early 40s. But I did ask about the adult outcomes. As I have written before, Lovaas and company have been paid at taxpayer expense to research and publish on these adult outcomes. To this day they still haven't. So one wonders if this insurance reform will really produce "functioning adults" Course that term could have a variety of semantic interpretations. Noah Greenfeld, one of Lovaas' first research subjects, may be a functioning adult, but his functioning is quite low and he will remain in institutional care the rest of his life. I think of the money my parents paid for my treatments. particularly the sensorimotor training I had which did nothing to improve my fine motor coordination, handwriting problems and perceptual motor impairments in spite of the usual claims of amelioration that were made to my folks.

I also wonder about the harm of these insurance reform bills. I currently have medical coverage on my parent's plan as a disabled dependent. I will lose that coverage when my parents who are in their 80s are deceased. Even if I inherit enough money or by some miracle I will be able to make a good living someday and purchase my own medical insurance, will I be allowed coverage after this law has been passed? After all this means that autism will be a pre-existing condition. Will parents with autistic child who don't have insurance be able to purchase it with their child's pre-existing condition. What if an autistic child needs a liver transplant or some other very expensive treatment? Also, this is not to mention how much health insurance rates and health costs, already prohibitively expensive for some with insurance rates rising will continue to rise. Does this mean others will have to pay more for their non-autism related treatments. I can only wonder.

In any event, I found this video interesting. Perhaps you will too. Enjoy.

21 comments:

SM69 said...

Thnaks for flagging this video. No matter how hard you wish to refute the evidences of inefficacy, and irrespectively of the causalities of autism, being genetic, environmental or a combination of both, therapies as cited on the video do help. ASD children need a lot of support and adults too and they do a lot better with it than without. It’s not about cure; it’s about meeting the needs of individuals. It should be a government’s responsibility to give what it takes. Today we have a huge problem, 17% of children, according to a recent survey conducted in Scotland in schools, have some sort of difficulty coping with the curriculum. We have 2 main choices, either we deal with it and provide the support needed to these children, it should not be a matter of who can afford it or who knows what to do and how to do it, or we stop messing around with the lives of people. I think we need both.

Roger Kulp said...

Those of us on SSI tend to forget how lucky we are.My father had me approved for SSI when I was twenty.I was never told of it at the time,and I never applied.I just got an approval letter in the mail one day out of the clear blue sky.I guess he thought I wasn't functional enough to do it myself, and to be honest I really wasn't.I think he may have been romantically involved with a woman who had an influential position at the main Social Security office who gave my application special treatment.

I think of all the years since,that I not only was barely functional because of my autism,but severely ill,and disabled,from all sorts of mysterious illnesses doctors could never diagnose.

My SSI has always gone entirely for rent,up until last year,I signed the checks over to the landlord every month.It has kept me off the streets,but that's all.That Medicaid is going to come in real handy,though,when I go to Cleveland for my mitochondrial evaluation. Something not mentioned in this video.

But it isn't just autism,the system is DESIGNED to keep any disabled adult who paid into it while working from collecting their money,and unless SS is scrapped and rebuilt from the ground up,there really is no solution.

I had sensorimotor training myself. Three years of it in school, starting in the fourth grade,when my teachers finally noticed I was having real problems.By the third year,I was showing some real improvement,but then I left the school it stopped and I reverted to where I was before it started. Thankfully I had developed heart problems by this time,that kept me out of taking gym class.

I think with all of the medical and neurological conditions we now know to occur in,or alongiside autism,it will be considered a preexisting condition,maybe even in the next five years.

Stephanie Lynn Keil said...

I am very curious to see how children with autism who are not being given many therapies, those whose parents support Neurodiversity, will fare against those who did receive many treatments.

It may well be that those in ND will still be living at home "celebrating" while those who had treatment will go to college, have jobs, etc.

Only time will tell...

Marius Filip said...

There is a lot of anecdotal evidence that treatments do work, at least in the short term.

The ATEC test is for checking whether one treatment or another works, be that biomed, or behavioral, occupational, speech or whatever therapy or medication.

When a child starts to improve suddenly under therapy, it's hard to believe that this happened by chance.

There is also anecdotal evidence that improvements do last into early adulthood.

There are no studies concerning adulthood, that's true - at least I couldn't find them.

I've learned from a documentary (on Discovery, I guess) that a health agency in the US is currently conducting an epidemiological study based on hundreds of thousands of subjects. It will take years to complete that.

Having such a result would be great, but I do not have details about that.

jonathan said...

Hi Marius, if that is the case you have to count psychoanalysis as an effective therapy having anectodotal evidence also based on my partial recovery and the claims that Bettleheim made also. But somehow I don't think many people are going to bring back psychoanalysis and the Bettleheim era as an option of choice for those on the spectrum

Anonymous said...

"When a child starts to improve suddenly under therapy, it's hard to believe that this happened by chance."

It may be hard for you to believe, none the less children improve regardless.

If you gave a normal child therapy, would you believe it was as a result of therapy or maturation?

Marius Filip said...

Jonathan

If I recall correctly, you received speech therapy and play therapy. I might say those helped, not the psychotherapy.

I don't know how your progress was tracked back then, but I assume the monitoring tools are better developed nowadays than they were in the '60s.

As I mentioned earlier, I agree with some of your objections to current treatments, especially concerning the fate of autistic adults. But I mentioned ATEC for a different reason: because it was designed by Dr. Rimland who believes in a combined approach.

My understanding is that he upholds that one hat size doesn't fit all and the therapist has to try various treatment combinations while checking the effects with ATEC (or some other tracking tool).

SM69 said...

Yesterday’s ASD children are different in term of behaviour, presentation and number to today’s ones. Today’s’ adults were yesterday’s children. Therapies are evolving and the population is as well. No study on adult autistics following initial Lovaas’s work does not prove that today’s therapies are ineffective. ABA is not conducted now as it isued to be conducted, sorry, I did not comment, but no use of aversive other than in JRC.

Having said this, still many children are struggling with currently available therapies and yes some children are improving without any clear intervention. This needs more research. There is no need to spend the amounts of money reported in the video to assist today’s children. But on the whole a child has much likely good outcomes following intervention than without any. Who would want to bet on a child’s future? Best to do everything in one’s power and this is why authorities and insurance companies should help. The level of spending reported in this video is not matched anywhere outside the US, as far as I know.

jonathan said...

Marius: I had no play therapy or speech therapy as a toddler or child. I had my speech problems in the late 1950's before speech therapy was used most likely. By 1960 my speech had recovered on par with a typical 4-5 year old's. So, in order to say there was a casual relationship between my partial recovery and therapy, you would have to credit Bettleheim psychoanalysis if you want to say that children with autism don't improve without therapy. I don't hold much stock in psychoanalysis, so this is one of many reasons why I feel it is necessary to report problems with the current autism therapies and question whether they are worth the high costs and whether insurance should in fact pay for them.

jonathan said...

Hi Lorene: I thought you said you were not going to comment on this blog anymore. Two posts in one thread so soon. Somehow I suspected I had not heard the last from you.

We have already established that you make money from treating persons with autism so your statements are made with conflicts of interest as we have already established. Since you claim the piece "The great autism ripoff" misrepresented what they wrote about you, yet you don't want to discuss the specifics, this would seem to provide more compelling evidence of your conflicts of interest in claiming there are valid treatments for autism that are worth the very exhorbitant costs that are being paid and that insurance should pay.

SM69 said...

Cost: consultation £120 for 1 hr with report and with letters to GP.
Tests £500.
Treatment £50-150 max a month depending on specifics.

Consultations used to be every 6 months because my reports were huge, now I am trying to ask parents to come back every 2-3 months. Pro rata £120, it can be 20 min. Nothing under 15 min paid, I answer about 20-30 e-mails daily without cost.

The doctor I work with (I have 18 consultations this weekend with her and we are just about to go to a psychiatric ward at the hospital here in Edinburgh) with me + report £120 for 1hr.

We fund raise to survive.

I keep writing grants all the time.

We have prime location clinic for 5 years as a donation.

All communications with GP and hospital are free.

Is that enough details for you?


Music and play therapies sessions free, what else?

Usually I make parents getting access to more funding and most of all we have the outcomes in the kids. I have total clear conscience of what I do is correct and ethical and valuable.

Why don’t you consider changing subject and giving me a break?

Marius Filip said...

I do not say that autistic kids do not recover without therapy. In fact, Michelle Dawson says she hasn't received any therapy at all and she is a researcher today, autistic advocate, etc - quite a functional person.

I say that some current therapies most likely do work, at least in the short term - and I place ABA in the first row in this respect.

From the numbers you mention it results that you spoke at a level of a 4-5 yo when being at age of 7 or so. I think the interaction with the psychoanalyst may have, in fact, had some positive impact on your evolution at the time.

This does not mean that the theories of Bettelheim are true. It means that the intervention he developed may have been, in fact, somewhat effective for other reasons than the ones intended by the inventor.

Such was the case with the Holding Therapy, too. Although the theory behind it is junk, there is anecdotal evidence that the procedure has some positive effects.

But anyway, I agree with you that the current therapies (including ABA) have to be better scrutinized in terms of cost/effectiveness ratio.

In terms of ABA, what bothers me is the 47% rate of recovery which is so much pushed forward as well as the lack of follow-up studies upon recovered kids turned adults.

And, of course, the fact that the bills are so high yet no agency, to my knowledge, presents ANY rate of success in terms of recovery.

And I mean really no results; forget the 47%, they don't show anything, not even a 10% or something.

For bills running tens of thousands of dollars a year, it's quite scary, I think.

jonathan said...

From the numbers you mention it results that you spoke at a level of a 4-5 yo when being at age of 7 or so.

I have no idea where you came up with that, it certainly has no basis in reality. I went from what I was told though i don't remember by parents and therapists I was nearly nonverbal at 2-1/2-3, recovered my speech at about 4 years old and have since talked at my age level.

Marius Filip said...

I might have taken wrongly your current age (assumed you are currently 56 yo).

I apologize for that.

If you gained speech by age of 4 on par with the typical children, it's simply amazing to me. I'm not surprised that your therapist assumed the merits.

jonathan said...

hi Marius, I am 53. I will be 54 in september. My therapist did assume the merits. She took full credit for the recovery of my speech. Bettleheim also took full credit for the recovery of his charges. I question whether it is really miraculous but in fact spontaneous recovery. All of these and the lack of adult outcomes we have discussed before make me question all of these assumptions. The video alleges these expensive therapies are necessary to ensure successful adult outcomes which so far the proof of which is nonexistent.

Roger Kulp said...

Johnathan.
Has anyone considered the possibility of what happens when the elderly parents of an autistic adult are no longer able care for themselves ?

What happens to the two of them then ?

I may be facing this problem soon,and would appreciate some suggestions on where to go to get help.

Yet another matter you will never see neuroinsanity address.

jonathan said...

Hi Roger, I am not sure what the answer is. I know a lot of parents of autistic children who don't have siblings or other relatives worry what will happen to their children when they are gone. I am not sure what would happen to the elderly parents of the child. I guess they would be in the same boat as the parents of typical children, other than unless the child with autism is an only child they might be too impaired to take care of their parents in advanced age. My parents are in their 80s and won't live forever. I do have a sister though. Of course they might find ways to be taken care of. My aunt has Alzheimer's and her daughters don't live in the city she does but she gets care from an in home nurse and gets some help. Other than that, not sure what answer i have. I guess you are asking this because you are an only child and are worried you can't take care of your parents when they get older? I have no easy answers.

You are right. Neurodiversity certainly would not care if someone were suffering because of these circumstances.

Stephanie Lynn Keil said...

Roger,

Is there not a Special Needs department where you live? This is mainly why I am getting on the list: I may never live on my own and when my father dies I will have some place to go. It takes about 10-15 years to get into a group home/independent apartment where I live.

But, if you have no place else to live you will be put at the top of the list as a "critical" patient. It will still take awhile, though.

There should be an agency where you live that can assist you with this stuff and get you on a list.

And I see Neurodiversity is really only applicable to high-functioning people with money. Those of us who have SSI and Medicaid see Neurodiversity as useless because we can't even get services/accommodations in the first place.

SM69 said...

Hi Rogers,

This is a burning and painful question every parent asks themselves. Siblings are only part of the answer and anyway is that fair to ask to a sibling or siblings to take care of an ASD dependent person? What will happen is hopefully what will be set out today for the future. Creating a community to support child that will embrace the ethics and quality support beyond us? Transitions phases, for child and parents. I have no idea how anyone could become at ease with these issues, but there must be a way. I see my son as vulnerable now as when he was born. I wish I could go back in time to helper better and much sooner.

Has anyone read the book: The child that never grew from Pearl Buck, Nobel Laureate, written in 1950?

I have ordered it, apparently it is all about these transition to adulthood to life beyond parents.

http://search.barnesandnoble.com/The-Child-Who-Never-Grew/Pearl-S-Buck/e/9780933149496.

I take it J if you publish this post that means, you allow me to commnet here and give me a break. That's be nice.

My son was born in NJ, whilst I think it is probably the least interesting State (sorry if I am offending anyone here), I miss the US so much. Right now, it's all foggy outside, and it is raining here. Scotland is a hard place to live, but it is isolated at least that is a good thing.

Anonymous said...

And now this case of the autistic marine -
http://www.latimes.com/news/local/la-me-marine-autism6-2009jul06,0,7706948.story?page=1

SM69 said...

That’s an interesting article, a very sad, likely not uncommon story. Whilst I can believe that with good support and management the army might be a good place for a person with autism, at least for a while, I’d be very concerned for safety issues on the battle ground. I have not experienced it of course, but, I’d think you need full awareness and a lot of multitask skills, no panic, to survive in such conditions.