Call congress to support autism insurance

9 Jul

Autism Speaks has been working in many states to institute insurance parity for autism. “Parity” means that therapies to treat autism must be given on the same level as other medical conditions.

One big loophole in this is that many insurance programs do not fall under state law. In the US, most people who have medical insurance get it through their employer. Generally, we all think that our employer buys a policy for us from some carrier like Blue Cross or Kaiser. But, what if the employer acts as the insurer? I.e. what if your company pays your medical bills? Well, one thing is that your company is not bound to follow state laws.

So, say you live in a state that has a parity law requiring that autism be covered, what then? Since the federal government doesn’t have insurance parity, you and your family don’t benefit from your state’s law.

You have to imagine this is one reason why companies self-insure.

That aside, Autism Speaks is heading a campaign to get the federal government to pass legislation to end “discrimination” in insurance coverage. They are asking people to call legislative leaders: house speaker Nancy Pelosi (contact info) and Senate Majority Leader Reid (contact info).

Up to this point I think this is very good. I would encourage people to contact these leaders, as well as your own congressperson and senators.

However, the TV ad really bugs me. Take a look and form your own opinion:

To people in the autism community, I think the message is clear. Insurance means funding ABA to make a kid normal. The kid with insurance gets to play with other kids, the kid without insurance is left sitting on his own.

I am not anti-ABA, but I really don’t like that message.

I also am not wrong in my interpretation. From Autism Speaks’ site “autism votes”

“Neighbors” depicts two young boys who are next door neighbors – one, whose insurance has given him access to autism therapies is shown playing with other kids; the other, who has been deprived of access to therapies, sits alone on his lawn, socially isolated. The TV spot ends with a call to action, urging the American public to call United States Senate Majority Leader Harry Reid (D-NV) and House Speaker Nancy Pelosi (D-CA) to tell them that any national health care reform plan that does not include autism insurance reform is unacceptable.

Fourteen states have already acted to amend insurance laws and require insurers to cover medically-necessary, evidence-based autism therapies. In the other 36 states, insurers explicitly exclude coverage of these behavioral therapies from policies, which places a significant financial burden on families seeking to provide their children with necessary services. Applied behavior analysis therapy (ABA), recognized as an effective, evidence-based treatment for children with autism, costs upward of $50,000 a year – a cost well beyond the means of most American families. A federal law would supersede state laws and require all insurers to cover ABA.

Again, I am not anti-ABA. I am against using ABA in an effort to make an autistic person (child or not) “normal”. Since this subject seems to come up in discussions of ABA, I will also make it clear that I don’t think any therapy should be mandated for autism. Mandating ABA is not the intent of this initiative, from what I can see.

Don’t let Autism Speaks or the commercial stop you if you support insurance parity for autism. It is a good cause.

62 Responses to “Call congress to support autism insurance”

  1. kuhleslaw July 9, 2009 at 02:15 #

    Thanks for putting aside the disagreements with Autism Speaks methods to highlight this legislation’s importance. Don’t just focus on the ABA coerrage, we have Speech and Occupational on this bill as well. One of the things preventing parents from getting real theapies for their kids is the astronomical expense that no one will cover. This bill would put autism on a par with any disability, disorder or injury regadless of the speed of progress so many insurance companies use as a slight of hand to throw these kids into the overburdened hands of school systems. I like them getting therapies at school, granted, but I’d also like to have them use school as a place for…maybe LEARNING, and not as a repository for every therapeudic need our kids have. Again, thanks for the support of the Bills, please, those in the States, get on the horn to your representatives and let them know we are here and united on critical issues to the autistic community, livsparents

  2. stephanielynnkeil July 9, 2009 at 02:28 #

    “The kid with insurance gets to play with other kids, the kid without insurance is left sitting on his own.”

    Well, from my experience, this is true. I get very little medical care and didn’t receive any official early, intensive intervention due to cost and now, as an adult, I am “left sitting on my own.”

  3. rajensen088 July 9, 2009 at 03:25 #

    Nowhere in this ad is ABA even mentioned?

    Autism Speaks is paying for and running the add in anticipation of the August deadline for real national healthcare reform including ending discrimination by insurance companies. My insurance company back in 1998 refused to pay for speech and language therapy at the loal pediatric rehabilition hospital, claiming in was the responsibility of the local school district, even though she had not even started school.

    Where did you read ABA in that ad?

  4. Sullivan July 9, 2009 at 05:50 #

    RAJ,

    as noted in the post, the Autism Votes website (an arm of AS) discusses aba. I have the link in now, or you click here.

    http://www.autismvotes.org/site/apps/nlnet/content2.aspx?c=frKNI3PCImE&b=3930723&ct=7180013

  5. Harry July 9, 2009 at 10:27 #

    Perhaps ABA wasn’t mentioned, but I’ve no doubt that the autism industry in the US is salivating at the prospect of what is likely to end up as coast-to-coast compulsory ABA on the slimmest evidence base.

    Most probably combined with hearty doses of neuroleptics at $200 a week.

  6. jypsy July 9, 2009 at 14:15 #

    This is *not* theRunman, this is his mother jypsy. I came here to point out some comments from those who can’t log in to post here, only to find myself unable to log *out* of therunman account (since it won’t allow me to change my user/display name) and into something else that looks more like myself. After numerous “you are attempting to log out of LBRB please try again” messages and attempts, I give up.

    So, in case anyone is interested, there are comments on this post at http://www.quicktopic.com/27/H/vJvhV4fDnBgw7/ specifically /m9349 and /m9350

  7. FreeSpeaker July 9, 2009 at 15:11 #

    “My insurance company back in 1998 refused to pay for speech and language therapy at the loal pediatric rehabilition hospital, claiming in was the responsibility of the local school district, even though she had not even started school.”

    Got news for you, it is the responsibility of your local school district. Under IDEA, early intervention is fully covered by your district. If your district does not want to pay, you have the right to sue their butts off.

  8. livsjourney July 9, 2009 at 15:36 #

    “My insurance company back in 1998 refused to pay for speech and language therapy at the loal pediatric rehabilition hospital, claiming in was the responsibility of the local school district, even though she had not even started school.”

    “”Got news for you, it is the responsibility of your local school district. Under IDEA, early intervention is fully covered by your district. If your district does not want to pay, you have the right to sue their butts off.””

    The other good news (because early intervention stops at 3), is that it it ILLEGAL, at least in my state of NJ, for an insurance company to deny MEDICAL therapies on the basis that it is EDUCATIONAL in nature. It’s the old shell game, find the services, is it under the ‘educational’ shell; the ‘medical’ shell; or the ‘your kid don’t deserve that much therapy’ shell.

    Yup Harry, take the position that ABA is this monolithic, discreet trial cash cow and that there is a distinct lobby that has a monetary agenda instead of altruistic one. I do worry that the quality of behavioral services and individuals working them will slip however, but with changes to the ‘certifications’ of behavioralists, it should be easy to separate the BCBA’s from the B.S.-BA’s.

    You let me know the minute they add ‘chemical restaints’ to any bills, I’ll set up picket lines from the superintendent of our school district to the Capitol steps…

  9. Sullivan July 9, 2009 at 19:03 #

    Jypsy,

    sorry for the problems logging in. If you wish to email me at sullivansjourney@gmail.com, I will try my best to help you to use your own account. I make no guarantees, but I will try.

    It is unfortunate that Michelle doesn’t post here and partake of the discussion here. I created an account for her and had a link sent to her email account which should have allowed her to set up a password and participate. However, I never heard back from her on whether that worked.

    Michelle has a great depth of knowledge, and I appreciate her voicing her opinions. Unfortunately, Michelle uses a poor argument. The idea that I believe that ABA should be mandated is inaccurate. It is not that “I don’t like the word”, it is that it is incorrectly applied. “Mandated” is not what I believe and it is not supported by the evidence of my writing. I hope and, indeed, ask, that she stop promoting the idea that I believe in mandatory therapies, even in the softer method she is using (stating that it is the effect of the laws I am supporting).

    I would also ask that she stop with the comments that I see scientific and ethical issues as political. Again, this is not supported by the evidence and is, in fact, incorrect. However, I do not have any problems acting politically or in other people acting politically. I have no problems with people using scientific results or ethics in politics. In fact, I hope that people acting politically would use ethics and scientific data whenever appropriate.

    Ms. Dawson makes a comment in her discussion:

    I don’t know about the federal law, but like the state laws it will have the effect of legally defining autism as an illness and disease (Autism Speaks’ position on this is clear), for which ABA-based interventions are “medically necessary” treatment.

    I agree that it is unfortunate and incorrect that the parity laws place Autism as an illness. However, the same can be said for some of the other conditions covered by the Mental Health Parity Act. This is not a problem with the Act itself, but, rather a problem with the way health insurance in general looks at autism. Autism is considered a mental illness by states which do not have Parity acts.

    Or, to rephrase: Autism is considered an illness by health insurance companies. This is not a result of mental health parity legislation, past or present.

    Michelle is incorrect that state laws (at least in California) make ABA a “medically necessary” treatment. The laws do open the doors to allow one to argue that ABA is “medically necessary” on a case by case basis. Even then, with support from medical professionals who can make recommendations for an individual he/she has examined, it is no where near accepted by the state that ABA is “medically necessary”. I don’t know of any therapy, for any condition, which has a law defining it as “medically necessary”. I could be wrong there. I do know that ABA is not specifically mentioned in the California Parity Act.

    I.e. Ms. Dawson puts the cart before the horse. The legislation does not define ABA as medically necessary, but allows for ABA to be funded if it is successfully argued that it is medically necessary.

    Also, it is worth noting that California has actually defined “medically necessary”, something I believe is uncommon amongst states. The California definition is all care that is:

    …reasonable and necessary to protect life, to prevent significant illness or significant disability, or to alleviate severe pain.

    Severe pain includes emotional pain. Emotional pain includes pain resulting from not learning to speak, or to speak well, for example.

    Also note that one need not cure or even be seeking a cure for a condition for it to be medically necessary.

    So, providing therapies such as speech or occupational therapies can be, in my read, medically necessary. Again, on a case-by-case basis. This is a very good thing, and I doubt it would be controversial.

    This is important since many health insurance policies specifically exclude developmental disabilities, which, for their purposes, autism is one.

    I believe if it weren’t for ABA, there would be little controversy in this proposed law. The idea of allowing for medically necessary therapies for people with autism is clearly ethical.

    The question that arises is whether ABA (which has many forms) is “medically necessary”. That is a good argument to have, and one that should be ongoing. I am encouraged that the IACC Strategic Plan calls for true Randomized Controlled Trials of existing therapies, and I hope that ABA is put the the test. There is some evidence on ABA, but it is not strong. I do welcome and expect that good studies be performed on ABA and many of the other therapies in common use today.

  10. Sullivan July 9, 2009 at 19:05 #

    As noted above, Ms. Dawson is welcome and encouraged to participate here. If nothing else works, she can email me her comments and I will post them here myself.

  11. Sullivan July 9, 2009 at 19:09 #

    Perhaps ABA wasn’t mentioned, but I’ve no doubt that the autism industry in the US is salivating at the prospect of what is likely to end up as coast-to-coast compulsory ABA on the slimmest evidence base.

    I have no doubt that the ABA industry sees this as a great chance to expand. It is worth watching and being critical. However, the idea that ABA would be “compulsory” is not accurate.

  12. Harry July 9, 2009 at 21:39 #

    This blog is now almost impossible to comment on reliably and is never easy. It really needs sorting.

    S,

    ‘compulsory’ – yes, that does sound a little Third Reich. I think I mean there’s likely to be little choice in what parents are offered.

    What alternative will there be? Insurance companies will demand recognized programmes. These programmes will not be designed by people like us. Michelle will have even less chance to have her say on them, than on LBRB. Mottron and Gernsbacher are not, and won’t be in the loop.

    And anyway, let’s put the academics back in their boxes. What do the parents and carers who’ve seen this ‘therapy’ in action have to say about it?

    Time for hj to step into the ring. Shout loudly hj, ’cause ain’t nobody listening.

    • Sullivan July 9, 2009 at 22:14 #

      ABA is expensive. No way insurance companies will push for it.

  13. dr treg July 9, 2009 at 22:41 #

    Double-blind controlled clinical trials of ABA do not seem to show on Pubmed or the Cochrane Library – is it no wonder if this is the case that Insurance companies do not regard ABA as “medically necessary”?

    • Sullivan July 9, 2009 at 23:01 #

      This is definitely a big piece of it. The evidence for ABA is weak, at best. The evidence for ABA as it is often applied is even less–many “ABA” providers are actually doing a mix of the alphabet soup of therapies (ABA, RDI, floortime/DIR, SCERTS, etc.) under the umbrella of the name “ABA”.

  14. therunman July 9, 2009 at 23:12 #

    Many hours and a reboot later and still:

    You are attempting to log out of Left Brain/Right Brain

    Please try again.

    I’ll never be able to log in under any other account if I can’t ever log out….

    • Sullivan July 9, 2009 at 23:22 #

      Jypsy,

      I am really sorry for the frustration.

      Do you see the full message:

      You are attempting to log out of Left Brain/Right Brain

      Do you really want to log out?

      If so, is the link for “log out” active?

      it works for me, but I have a different type of account than you–username rather than blogspot.

  15. livsjourney July 9, 2009 at 23:20 #

    “So, providing therapies such as speech or occupational therapies can be, in my read, medically necessary. Again, on a case-by-case basis. This is a very good thing, and I doubt it would be controversial.”

    I’m having trouble reconciling this statement with the objections to ABA as a ‘medically necessary’ therapy. If a school system (or now a doctor in the argument) put forth that ST, OT or ABA was necessary for a child’s development, aren’t parents and caregivers the arbitors to say yea or ney? Conversely, if a parent deems OT, ST, or ABA (or drugs or commitmant for that matter) despite our own personal POV’s or even objections, isn’t that up to the parent or legal guardian of that person to determine what course they take? If you’d like to take up the legal ramifications of what is considered disease or disorder, I’m not going to advocate using much needed legislation for thousands as the forum for the determination of legal rights of individuals to be unique. I’m sorry, but there is a larger discrimination being rectified with the legislation.

    As far as DB trials of ABA, it’s always confounded me how a behavioral intervention can be neatly fit into the scientific method, unless you are targeting removing very generic behaviors that, almost by definition, lends itself to the ‘ABA is designed to make a person act neurotypical’ argument. Behavioral interventions are targeting specific behaviors and will hopefully enhance a person’s ability to function in the world around them. I sometimes struggle with the potential and actual misuse of behavioral interventions, but their benefits, in my view, are undeniable.

    • Sullivan July 10, 2009 at 00:15 #

      “I sometimes struggle with the potential and actual misuse of behavioral interventions, but their benefits, in my view, are undeniable.”

      Bill, we all (and I do mean all) have our biases. We need to have good data to lead us. A big problem is, in my mind, what are the outcome measures that are valid? We need something measurable and quantifiable. I do think that Lovaas muddied the water a lot with his “indistinguishable from peers” measure.

      Conversely, if a parent deems OT, ST, or ABA (or drugs or commitmant for that matter) despite our own personal POV’s or even objections, isn’t that up to the parent or legal guardian of that person to determine what course they take?

      To some extent. There has to be limits, though. At some point, when you are using your own money, it is your own choice. Insurance is, basically, using a pool of money from everyone. At some point, they should have some say as to how the money is spent.

      I would also add that I think a double blind trial of something like ABA is impossible. A randomized control trial is, though.

  16. Sullivan July 9, 2009 at 23:29 #

    Jypsy-

    I changed the name on your first comment from “therunman” to Jypsy. I will continue to do that if you like until we can fix this problem.

    I looked, but I can not find a way to log you out from the access I have.

  17. therunman July 9, 2009 at 23:53 #

    The message is:

    “You are attempting to log out of Left Brain/Right Brain

    Please try again”

    The “Please try again” is an active link…. that leads me right back to this page with:

    “Logged in as therunman. Logout »”

    Clicking “Logout” continues the vicious circle.

    • Sullivan July 10, 2009 at 00:08 #

      Jypsy,

      sorry for the problems. Thanks a lot for letting me know what is happening.

      I’ve dropped a line to Kev with this issue. I’ll see what his take is and what he can or can’t do.

      It may be possible to log in as jypsy if you were to clear the cookies on your browser. Just a guess. I know you’ve already done a lot, and I know how frustrating this sort of thing can be.

  18. Harry July 10, 2009 at 00:39 #

    “I sometimes struggle with the potential and actual misuse of behavioral interventions, but their benefits, in my view, are undeniable”

    Well there are certainly some heavyweight, mainstream supporters of this view, and some equally heavyweight detractors:

    “Moreover, several recent reviews (Howlin et al; Rogers and
    Vismara, Reichow and Wolery) note that although certain types of ABA, notably early intensive home based behavioural interventions, clearly work for some children, many children show little change sometimes after years of therapy. Others may even regress during the course of treatment.”

    • Sullivan July 10, 2009 at 01:18 #

      While there are definitely non-responders, the idea that some show little change after years of therapy seems an odd statement. We are typically talking about very young children. They will change over years, whether due to therapy or not.

      Some of the outcome measures may not change (e.g. various measures of IQ). The children almost certainly do change. The question is how much, if any, can be attributed to the therapy.

  19. Joseph July 10, 2009 at 02:23 #

    I sometimes struggle with the potential and actual misuse of behavioral interventions, but their benefits, in my view, are undeniable.

    Argument by assertion.

    Typically, when it comes to ABA, this is accompanied by argument from authority.

  20. Prometheus July 10, 2009 at 02:55 #

    I have to suppose that if AS is involved in getting autism “covered” by insurance, at least one of their goals will be to have their favorite fantasy-based medicine – such as chelation, HBOT, stem-cell therapy and Lupron for autism – covered by insurance. I can’t imagine that the “higher-ups” at AS would stop at ABA.

    There is much talk about eliminating payment for “ineffective” therapies in the discussion about health-care reform in the US. In an ideal world, the fantasy-based therapies so loved by AS would never be covered. However, our world is far from ideal.

    Given that the US Congress would ultimately be in charge of deciding what is and is not “effective” or “best practice” (if you doubt that, see what they’re doing about GM automobile plants and dealerships being closed in their congressional districts), it would be “boom-times” for “alternative” practitioners. Think of Dan Burton and Tom Harkin.

    I’ve read the literature on ABA and it seems that nobody does it as well as the Lovaas in his original papers. In fact, the researchers seem to be having a hard time showing that a “fully trained” ABA therapist is any more effective than a parent or hired caregiver with a few hours of training. One might argue that these were placebo-controlled trials and that ABA training is no better than “placebo”. You draw your own conclusions.

    I think that it is a good idea to have autism “covered” by insurance, but I think we also need to ask the question, “What, exactly, are we covering?” After all, it’s one thing to “cover” speech or occupational therapy or even ABA (as much as I question its efficacy); quite another to “cover” chelation, HBOT, Lupron and stem-cell therapy.

    So, call Congress and ask them to “cover” autism if you like, but be prepared to confront the quack-fest to follow.

    Prometheus

  21. codeman38 July 10, 2009 at 03:00 #

    I had commented on the logout issue on the day the new login system was introduced… apparently it *still* hasn’t been fixed. Sigh.

    As an alternative, Jypsy, try clearing all browser cookies for leftbrainrightbrain.co.uk and leftbrainrightbrain.rpxnow.com– I don’t know which web browser you use, so I can’t offer more detailed instructions, but if you let me know I’ll send you appropriate instructions.

    • Sullivan July 10, 2009 at 03:15 #

      I had commented on the logout issue on the day the new login system was introduced… apparently it still hasn’t been fixed. Sigh.

      Sorry for the troubles. As I noted above, I am willing to post any comments emailed to me at sullivansjourney@gmail.com.

  22. Sullivan July 10, 2009 at 03:11 #

    Prometheus,

    the idea that this would allow for alternative medical treatments to be paid by insurance is something that is definitely on the minds of many (you know what blogs to check).

    This has not been the case in California with the advent of mental health parity.

    The autism insurance groups tend to see some efforts to get chelation and HBOT paid. I’m sure that the recent papers on HBOT are being placed in front of insurance companies as I type.

    As to which congressmen are in support of this–it is actually very different from what you might think. The mental health parity law that was signed last year (the economic bailout bill was a rider on a mental health parity law by the Rhode Island Kennedy) had Henry Waxman as a co-sponsor. Burton was not a co-sponsor of the original bill.

  23. Jennifer July 10, 2009 at 03:21 #

    Test

  24. Jennifer July 10, 2009 at 03:23 #

    Ok, after a lot of fiddling, I think I have this under control. I’m using Firefox, normally, and I had entered the vicious circle that jypsy alludes to above. But using IE, I am not logged in, but can see my post. Next, I will try to login using IE, and see if I can logout afterwards – totally failing to do so with Firefox. If that fails, then maybe Google Chrome???

    In any case, Michelle has asked someone to post her comments (now posted at QuickTopic to this list. So, I will do so in the next message.

  25. Jennifer July 10, 2009 at 03:26 #

    Here is the link to Michelle Dawson’s quicktopic list, which doesn’t have these issues 😉

    http://www.quicktopic.com/27/H/vJvhV4fDnBgw7

    And here are Michelle’s comments, from earliest, to latest, regarding this blog:

    On 07-08-2009 09:58 PM ET (US) Michelle Dawson wrote:

    LBRB has made it way too difficult (for me at least) to leave a comment on their blog, so I’m going to respond to this https://leftbrainrightbrain.co.uk/?p=2567 here.

    Sullivan (no relation, I don’t think, to Andrew Sullivan at the Atlantic), the blog post author, fully supports Autism Speaks’ effort to use health parity laws at state and federal levels to mandate (I realize Sullivan does not like this word, but this is the effect of the laws he is promoting) ABA-based autism interventions as “medically necessary” autism treatment. He also promotes Autism Speaks’ view that the quality of evidence supporting ABA-based autism interventions is plenty good enough for autistics.

    Then he writes:

    “Again, I am not anti-ABA. I am against using ABA in an effort to make an autistic person (child or not) “normal”.

    As you can see, Sullivan sees scientific and ethical issues as political (the “anti-ABA” is a dead giveaway).

    But here is something I once wrote in a Yahoo list, in response to the proposal that there is this new kind of ABA-based autism intervention (not like that old kind at all…) that has nothing to do with anything reported in the ABA literature with respect to autism, or with any of the current ABA manuals, or with any of the current descriptions of ABA programs provided by ABA service providers, or with any of the current major ABA textbooks, or with any of the books and book chapters written by behaviour analysts. I’ve slightly modified it to make is more clear:

    “If the goals of PBS/ABA-based autism interventions are *not* to suppress or extinguish autistic traits and abilities (which are regarded as inadequate, inappropriate, maladaptive, dysfunctional, etc), and to replace them with appropriate, desired nonautistic versions–then there is no evidence base whatsoever for these interventions. And even if you don’t bother to consider goals, the evidence is still of extremely poor quality.”

    In fact, that paragraph understates the problem, but it’s enough to go with.

    Another problem is that at least some states’ “parity” laws define or categorize autism as a mental illness. California’s parity law legally defines autism as a major mental illness, alongside schizophrenia, major depression, etc. I suspect Massachusetts’ law does likewise, though I stand to be corrected on that. I don’t know about the federal law, but like the state laws it will have the effect of legally defining autism as an illness and disease (Autism Speaks’ position on this is clear), for which ABA-based interventions are “medically necessary” treatment.

    In my view, Sullivan’s position represents extremely poor standards of science and ethics. And Autism Speaks’ defence of their position on the federal law is grossly dishonest and demonstrates that this law is very much about imposing low/no standards of science and ethics on autistics. You can read it here http://www.autismvotes.org/atf/cf/%7B2A179…nce%20Provision.pdf . I should write about it but not sure as usual if I’ll manage.

  26. codeman38 July 10, 2009 at 03:27 #

    Also on the login issue, would it be that difficult to just set it up so that any visitor could create a local WordPress login account themselves, as an alternative to (and alongside) the RPX thing? It seems like that’d be a reasonable compromise to me, anyway– and it would solve the issues experienced by pretty much everyone I’ve talked to who had issues with this comment system.

  27. Jennifer July 10, 2009 at 03:27 #

    On 07-09-2009 04:08 PM ET (US) Michelle Dawson wrote:

    Lots of highly questionable stuff here https://leftbrainrightbrain.co.uk/?p=2567#comment-59407 from Sullivan, including the claim that I’m being dishonest about not being able to comment on LBRB. Amazing–autism advocacy rules, again.

    When I raised the problem of how difficult it is to post on LBRB, I was berated at length for even *mentioning* this on the private Hub list. Others had to intervene on my behalf. Now I find out that this is the way LBRB makes their readers welcome. This is clearly way too sophisticated for me.

    To my further amazement, Sullivan denies that his position is political, all the while using terms like “anti-ABA” and demanding wholesale political action. Whoever is the loudest, best organized, most numerous, etc., wins–this is what Sullivan wants. He wants your vote, to support his views. And then Sullivan claims this is not politics?

    Sullivan does not respond to the main point in /m9349 , which is the remarkable absence of good quality evidence supporting the “medically necessary” autism treatment Sullivan is using his power and influence to promote. As I wrote, the dearth of good quality evidence holds even if you don’t bother with goals.

    Instead, Sullivan’s position is that autism interventions should be legally defined (what I mean by “mandated”) as “medically necessary” treatment first. Then afterwards, maybe some thought can later go into investigating whether these “medically necessary” treatments are more beneficial than harmful to autistics.

    I very much disagree with Sullivan here. It it both very bad science and very bad ethics to promote treatments that are not supported by good quality evidence, much less to demand they be legally defined as “medically necessary.”

    This kind of promotion and legislation makes it very difficult, if not impossible, to conduct fair tests of these treatments. This is particularly true when complete blinding is not possible. And this is one of those very, very basic standards of science and ethics that are denied to autistics by autism advocates like Sullivan.

    Also, somehow Sullivan spotted in /m9349 a claim on my part that California’s health parity law mandates ABA-based autism interventions as “medically necessary” treatment. I see no such claim, sorry.

    But California’s health parity law, which legally defines autism as a major mental illness, is the basis for at least one current lawsuit demanding ABA-based interventions as “medically necessary” autism treatment. See how it looks here http://www.dralegal.org/downloads/cases/Autism/001_Complaint.pdf I don’t know whether Sullivan supports this lawsuit, but why wouldn’t he?

    For the term “medically necessary” as used in laws, see the model legislation for states http://www.autismvotes.org/site/c.frKNI3PC…ate_Initiatives.htm (click on the link for Autism Speaks’ model legislation). The federal legislation promoted by Sullivan is here http://www.autismvotes.org/atf/cf/%7B2A179…as%20introduced.pdf

    And while Autism Speaks’ defence of the federal law is grossly dishonest (I have run out of links, but it is linked to in /m9349 ), it does reflect what the law Sullivan is promoting is all about. This is autistics’ future.

    Sullivan also takes the position that ABA-based autism interventions are “medically necessary” because these interventions are:

    “reasonable and necessary to protect life, to prevent significant illness or significant disability, or to alleviate severe pain.”

    He emphasizes his view that in the absence of ABA-based autism interventions, autistics will be in “severe pain.”

    Sullivan’s views are identical to those of FEAT et al. in Auton and ever since (the “Medicare for Autism Now!” campaign, among others).

    Sullivan writes:

    “I believe if it weren’t for ABA, there would be little controversy in this proposed law. The idea of allowing for medically necessary therapies for people with autism is clearly ethical.”

    Autistics get sick, just like nonautistics. Like nonautistics, we need medical treatment when we are sick or have a condition for which medical treatment is indicated. Autistics who have seizures may need treatment for this, for example.

    But there is currently no good quality evidence supporting medical approaches to autism. The only FDA-approved drug, risperidone, is not supported by good quality evidence (Jesner et al., 2007). Sullivan is promoting medical approaches to autism, consistent with the view–which seems to be Sullivan’s view–that autism is a disease, without good quality evidence establishing that any given medical approach is more beneficial than harmful.

    Autistics do need assistance, services, education, etc. Recognized standards of science and ethics would be good also. Even really basic standards would be a huge improvement over what Sullivan is demanding.

  28. Jennifer July 10, 2009 at 03:28 #

    On 07-09-2009 04:47 PM ET (US), Michelle Dawson wrote:

    By the way, I don’t know US laws re parents denying children “medically necessary” treatment. But Sullivan is taking the position that if parents choose not to seek “medically necessary” ABA-based interventions for their autistic children, when these interventions are available and prescribed, this would not be okay and would be neglect.

    In Canada, as has been noted a few times on TMoB, provinces (possibly all of them) have laws which place requirements on many adults to report to the relevant child protection authorities when any child is being denied “medically necessary” treatment.

    This aspect of Canadian law was noted in my application for leave to intervene in Auton as well as in my written argument (factum). My written argument also notes that there are consequences for autistic adults.

    This is quite apart from how parents’ views re “medically necessary” ABA-based interventions would play out in custody issues in the case of divorce, something which has also been discussed here.

    Like FEAT and others similar, Sullivan demands that ABA-based autism interventions have the same status as other “medically necessary” treatments, which leads to the possibility that parents and autistics will have no genuine choice. At the same time, Sullivan sees no problem with the ongoing (48 years and counting) lack of good quality evidence demonstrating that these interventions are more beneficial than harmful.

  29. Jennifer July 10, 2009 at 03:28 #

    On 07-09-2009 09:37 PM ET (US), Michelle Dawson wrote:

    Does anyone want to set up a blog for LBRB exiles, so we can post comments in response to what LBRB writes about us, and about things that will affect our lives?

    I am amazed that *anyone* can manage to comment there. How on earth do you do it? And why has LBRB, after being told numerous times that they are excluding so many of us, continue to do so?

    I don’t give up easily, and wasted hours trying to get through the impossible LBRB system. I would not expect anyone to try as hard as I did. Then I lost a lot of time being berated by Sullivan when I made the error of mentioning the problem.

    LBRB is now knowingly excluding at least some autistics, and maybe a lot of us, from commenting. What example does that set, from the Hub’s flagship blog?

    Anyone here who can post comments on LBRB, please feel free to scan in what I’ve written here re LBRB, including the above, as a LBRB comment. In fact I would be hugely grateful if you did. Just stick my name on it somewhere, so I can be accountable for it.

  30. codeman38 July 10, 2009 at 03:33 #

    OK, I just found another way to log out of the comment system (at least in Firefox 3.5, anyway)– if you click on your username right above the text entry field for comments, and then click on “Log Out” in the upper-right corner of the resulting profile page, that should work.

  31. Jennifer July 10, 2009 at 03:34 #

    And right now, Jennifer wrote:

    Michelle’s comments will not appear in the correct order, since the spam filter seems to be holding up the ones with links. In addition, some of the links may not work. In the interest of not posting ANOTHER link, I’m going to suggest that you can find the Quicktopic message board by googling “quick topic michelle dawson”. Make sure that you arrive at the current page by deleting any page numbers that appear in the link after the final slash, for example: p1958.1950

    • Sullivan July 10, 2009 at 04:19 #

      Michelle’s comments will not appear in the correct order, since the spam filter seems to be holding up the ones with links.

      My experience is that the time-stamps given to posts mean that once they are pulled from the spam filter, they end up in the correct order. I hope that is the case here.

  32. Jennifer July 10, 2009 at 03:38 #

    Hey, thanks Codeman. That worked. I’m now commenting through IE. Let’s see if I can logout afterwards.

  33. Jennifer July 10, 2009 at 03:39 #

    Nope, same vicious circle with IE.

  34. codeman38 July 10, 2009 at 03:43 #

    Clearly, this login system is just broken and ought to be scrapped, given that this many people are having trouble with it.

    (Heck, I probably only was able to log in because I ‘rolled my own’ OpenID provider using PHPMyID hosted on my personal domain…)

  35. Sullivan July 10, 2009 at 04:23 #

    In any case, Michelle has asked someone to post her comments (now posted at QuickTopic to this list. So, I will do so in the next message.

    Thanks Jennifer.

    I changed the name on the posts to Michelle Dawson. Let me know if anyone thinks this is not appropriate.

  36. Sullivan July 10, 2009 at 05:02 #

    I’ve been informed that changing the name from “jennifer” to “michelle dawson” wasn’t a good idea, so I changed them back.

    Sorry for any confusion.

  37. golden.arthur July 10, 2009 at 08:05 #

    I am testing to see how long it takes for me to have a comment appear.

    Arthur Golden of Jerusalem Israel

  38. golden.arthur July 10, 2009 at 08:23 #

    Since I was not logged in, which I did through my google account, and I had to scroll down to the bottom of the 45 comments twice with a mouse that needs to be replaced, it took almost 4 mintues from start to end for the above comment to show up.

    I do not understand why Michelle Dawson spent hours in an unsuccessful try to post a comment to this blog and I am even more mystified why Jypsy, who is much more computer-savvy than I am, is having problems here.

    However, I do share some of the concerns of Michelle Dawson while I have some concerns about Michelle Dawson. But first I really need to try to replace my mouse because scrolling down and right is almost impossible now.

    Arthur Golden

  39. AnneB July 10, 2009 at 08:24 #

    The ABA litigation under California’s mental health parity law is getting hotter and heavier.

    Last week, a consumer protection organization and a pediatrician who also has an autistic child sued the California Department of Managed Health Care in Los Angeles County Superior Court – Consumer Watchdog, et al. v. California Department of Managed Health Care (DMHC), et al.

    DMHC is a state agency that regulates full service health plans like HMO’s and PPO’s, and is supposed to enforce compliance with California’s Mental Health Parity Act. The Consumer Watchdog plaintiffs allege that the DMHC has failed to enforce the law by refusing to require insurers to provide ABA treatment for autism. The complaint alleges that “the scientific evidence supporting the medical necessity of ABA is now uncontroverted.”

    You can read Consumer Watchdog’s press release – which has a link to the complaint that was filed – at consumerwatchdog dot org/patients/articles/?storyId=28207 .

    Meanwhile, Kaiser Permanente has been sued in four cases, and Blue Cross in one case, in California for failure to provide autism treatments, including ABA. The cases may be coordinated so that they will be handled by one judge, probably the Los Angeles County Superior Court Judge who is handling the Arce v. Kaiser case. Kaiser is taking the position that autism ABA is not a health care service because it addresses “educational and social” needs and is provided by non-licensed practitioners.

    I think that Sullivan is right that the mental health parity law doesn’t specifically require insurers to cover autism ABA, but it opens the door to arguments for ABA (or any other proposed treatment) as a medically necessary treatment that should be covered. Some plaintiffs have already walked through that door, and in the Consumer Watchdog case, they are asking that the court require the state (through the DMHC) to mandate ABA as a medically necessary autism treatment.

    Hey Sullivan, I don’t think Michelle will be able to figure out how to log on here. It took me three days to figure it out. Maybe instead of trying to make her come here, you could go over to her place for a discussion.

  40. golden.arthur July 10, 2009 at 12:51 #

    Getting back to the subject of this blog “Call congress to support autism insurance” I feel that much of these efforts should be re-directed at obtaining a “Free Appropriate Public Education” under the over 30 year-old federal law P.L. 94-142 now known by the acronym IDEA. With my background as a lawyer since 1971, I started in 1980 to make an intensive effort to obtain FAPE for my own then 8 year-old son Ben (who had an “official” diagnosis of autism as a yound child, was and still is completely nonverbal and at that time, actually in 1979, had another regression resulting in the loss of most skills) and expanded my efforts to be an advocate for many others to obtain FAPE until I left the United States in 1996.

    Through due process under IDEA, I obtained full-funding for a residential program for ABA-type services (ABA home services did not exist in Massachusetts back then nearly 30 years ago) and after just 1-1/2 years I was able to obtain fully-funded ABA-type services in my local public schools, leading into an inclusion program. Unfortunately, after a total of 5 years of ABA-type services with glowing reports of continued progress, my then 13 year-old son, who was now bigger than his all-female staff, had another regression resulting in the loss of most skills and became completely unmanageable. Fortuitously, other educational services became available for my son, and while admittedly it took over 2 years to obtain full funding, but then Ben received FAPE until he became 22 in 1994 and continues to this day to make progress.

    I think ABA services, if appropriate for a specific child, should be obtained as part of FAPE under IDEA. However, as with my own son and many others I have known, at times ABA is not the appropriate educational service and the protections of a multidisciplinary team approach under IDEA, which includes parents and public school officials and as soon as possible should include the student, should be pursued to obtain FAPE. King Solomon wrote about 3,000 years ago that each child should be educated in his own way, and this Ancient Wisdom seems to me to be as applicable today as then, whether or not autism existed back then.

    Arthur Golden of Jerusalem Israel

  41. rajensen088 July 10, 2009 at 15:35 #

    “Got news for you, it is the responsibility of your local school district. Under IDEA, early intervention is fully covered by your district. If your district does not want to pay, you have the right to sue their butts off”.

    It wasn’t in 1989 in New Jersey. New Jersey is one of the more progressive states but sadly too many states aren’t. Only a national mandate will provide coverages for treatment.

  42. golden.arthur July 10, 2009 at 16:25 #

    To: rajensen088

    You first give the year as 1998 and now as 1989. I do not have the information in front of me, but I am certain that there was a federal mandate for all states for early intervention from birth in 1998 and I think it was fully in effect in 1989.

    But in some states it is provided at the state level and not through the local school district. I am sorry that you were not properly informed about the law and I realize parents of very young children may not be informed of their rights under federal laws that have been on the books for decades.

    As I tried to express before and I will try to be more explicit, I think Autism Speaks and other such organizations should inform parents of their rights under existing laws, such as IDEA, and put some effort into implementing these existing laws, which cover all children in the USA, instead of putting all their effort into medical insurance parity, when so many people do not have any medical insurance.

    By the way, I will now be away from my computer to post comments for about 1-1/2 days.

    Arthur Golden

  43. AnneB July 10, 2009 at 18:03 #

    Oops, the link I provided for Consumer Watchdog doesn’t work because I left out the www. It’s:
    www dot consumerwatchdog dot org/patients/articles/?storyId=28207

  44. livsjourney July 10, 2009 at 18:29 #

    “I sometimes struggle with the potential and actual misuse of behavioral interventions, but their benefits, in my view, are undeniable.”

    “Argument by assertion.

    Typically, when it comes to ABA, this is accompanied by argument from authority.”

    Hence my three little words ‘in my view’. Opinions are like congressmen, everyone’s got one…

    My main problem with some of these assertions I see above is that I get the impression that some would say that behavioral interventions are NEVER necessary for children on the autism spectrum. Let me pose the question back to those detractors of ABA to ask whether I am making a true statement on your behalf. If I am not, I put forth that just as with ANY intervention for autism, like Speech and OT, medically necessary does not mean medically ‘required’.

    One may want to argue the language of ‘mental illness’, ‘disease’ and any other terminology, but to stretch the intent of the legislation in this manner:

    “reasonable and necessary to protect life, to prevent significant illness or significant disability, or to alleviate severe pain.”
    He emphasizes his view that in the absence of ABA-based autism interventions, autistics will be in “severe pain.”

    trivializes those situations that some autistics are in life threatening or self damaging behaviors that MAY be helped (and I would assert my OPINION that they ARE helped) by behavioral interventions. But again, the term medically necessary does not equate to medically required. To hold behavioral interventions to a generic ‘beneficial more than harmful to all autistics’ standard cheapens the need to some who could benefit (again IMHO) …

    • Sullivan July 10, 2009 at 23:59 #

      Opinions are like congressmen, everyone’s got one…

      keep in mind this is a UK based blog. They don’t have….congresspeople.

  45. bhjacobs1 July 11, 2009 at 00:00 #

    My research shows that there is no validation for EIBI/ABA whatever. Kanner showed a 15% ’emerger’ group from his original cohort in the very early days, from 1943. Smith et al (2000/2001) show 13%.

    Kanner wins.

    Job done, as we say.

    • Sullivan July 11, 2009 at 01:14 #

      Job done, as we say.

      If you take as the only outcome measure being an “emerger”. It is somewhat fair, as that is along the lines of Lovaas’ outcome measure. I don’t think it is a good measure. Many who argue against ABA seem to feel the same way.

  46. AnneB July 11, 2009 at 02:40 #

    Do parents have the right to withhold medically necessary treatment for their child? In my state, they don’t. Remember the Nate Tseglin case, where an autistic teen was taken away from his parents by the County of San Diego? The County got a court order to remove Nate from his parents, and he ended up in one of the Dept. of Developmental Services institutions. The parents appealed, and the court of appeal said that the decision to take Nate from his parents was right:

    “There is substantial evidence to support the findings that Nate was suffering serious emotional damage while in the custody of his parents, as demonstrated by his aggressive behavior directed both toward himself and others, and that the parents were unable or unwilling to allow him to be treated on an ongoing basis. … According to medical experts, Nate needed a controlled setting where he could be provided with treatment, but the parents refused to consent to such treatment. …

    There is substantial evidence supporting the court’s finding that the parents’ repeated failure to provide the care that Nate required caused him to continue to act out aggressively. … The parents were not able to care for Nate on their own, and medical professionals did not agree that Nate should receive various treatments that the parents recommended or requested.”

    In re Nate T., D051250 (Cal. App. 4/18/2008)

    The treatment that the parents didn’t want was psychotropic drugs, and the treatments that they did want were, I’m guessing, “biomed.”

    Nate got out when he turned 18 and the court lost jurisdiction over the case because it was based on child abuse or neglect.

    Anyway, I think it’s reasonable to wonder what would happen if ABA were deemed a medically necessary treatment for a particular child by a health care practitioner, and the parents refused to carry out that treatment, and the child had “severe behaviors” …

    It’s the flip side of the coin. If the parents want a particular treatment, they want it covered by insurance. But what if they don’t want the treatment? What if, like psychotropic drugs, the treatment has crappy evidentiary support but doctors are recommending it anyway?

    We don’t want our kids to be discriminated against in health care but, unfortunately, we have a long way to go to get to real evidence-based autism treatments. In the meantime, what treatments should we say are “necessary to protect life, to prevent significant illness or significant disability, or to alleviate severe pain” (the California definition of “medically necessary”)?

    • Sullivan July 11, 2009 at 15:53 #

      AnneB,

      It’s the flip side of the coin. If the parents want a particular treatment, they want it covered by insurance. But what if they don’t want the treatment? What if, like psychotropic drugs, the treatment has crappy evidentiary support but doctors are recommending it anyway?

      thanks for your input. This is more than the flip side of the coin–it is one of the key questions. I’m glad you elaborated on the idea of mandates. The word is highly charged in the discussion of ABA. So much so that many people on hearing that that health insurers are “mandated” to pay as something different than it is.

      When an insurance company is mandated to pay, that is far different from a parent or a provider mandated to provide the therapy for an autistic child. Clearly.

      The odds of ABA (or any specific therapy, medication or treatment for that matter) being specifically mentioned in a law and specifically “mandated” is very low. Are there any medical procedures which are mandated by law? I can only think of one–vaccines. And that is a very soft “mandate”. Other than that, the government should not be deciding what therapies are appropriate. Better therapies come out, new research invalidating old therapies comes forward.

      Should autism be included in the healthcare overhaul congress is considering, the language would almost certainly not include any “Mandates” for ABA. Rather, coverage for autism would be mandated and any specific therapies or treatments will be included afterwards (and not codified in the law) by precident–people arguing that ABA or other therapies meet some definition of “medically necessary”. They would also be removed from any approved list by research as well, either showing that they are not effective or that other therapies are more effective.

      That is why I am in full support of the NIH doing the RCT’s on the therapies commonly being used–ABA, floortime/DIR, RDI, etc.. Not because I have some belief that they will prove me right in some way, but because the research is so thin (or non-existent) for these therapies.

      For some time, Joseph has been pointing out that the children who took part in the original ABA studies are now adults and that it would make sense to study them to confirm or reject the notion that there was long-term benefit from the ABA therapy they received. I think that is an excellent idea.

      We need good science on this. I don’t know why more people aren’t calling for it.

      Do parents have the right to withhold medically necessary treatment for their child? In my state, they don’t.

      Yes and no. While there might be the possibility of abuses on an a few cases. It is quite rare for the state to intercede. The idea that this would open the door to mandate ABA for all people (or just all children) with autism is just not founded.

      Again, this is where good, clear science is needed. That would better inform both the parents and the government in this.

      Medically necessary does not automatically imply that the state will intercede into families. A good example is right in front of us. Vaccines are medically necessary. They fit the California definition “necessary to protect life, to prevent significant illness…”, and I believe are generally accepted as medically necessary. Vaccines are, in fact, the only medical procedure that I can think of that is legally “mandated”. However, I think we would all agree that there are many people who withhold this medically necessary, mandated, treatment from their children without consequence.

      Consider the question of the state interceding to impose ABA therapy on a child whose parents chose to not do ABA. Aside from the “we need better science” answer, I would say that the parents would find it quite easy to find “experts” to say that ABA is not appropriate for their child. My guess is that if the parents do not want ABA, their school district would happily oblige with experts who agree that ABA is not appropriate for the child in question, if only to avoid the situation where the school district ends up paying for some or all of the ABA.

      As an aside, the Nate Tseglin case is amazing subject in that it is one where this blog, AoA, ASAN and Ginger Taylor all agreed that the situation was a travesty.

  47. passionlessdrone July 11, 2009 at 02:51 #

    Hello friends –

    The only problem I have with that video is that it provides a sugar coated version of autism, wherein the worst thing about autism is an autistic child outside with other children and he doesn’t want to play with them. How do you conceptualize the more encompassing reality; a child who doesn’t understand that a game is being played at all? In any case, anything that makes it so my child wants to have friends and knows how to interact with other children is AOK with me.

    As for problems logging in, I had a problem initially after the redesign, but got through on my third attempt. Perhaps anyone having trouble simply needs to perform more “discreet trials” of the process until they can get the process down.

    – pD

  48. rajensen088 July 12, 2009 at 04:43 #

    To: rajensen088

    “You first give the year as 1998 and now as 1989. I do not have the information in front of me, but I am certain that there was a federal mandate for all states for early intervention from birth in 1998 and I think it was fully in effect in 1989”.

    If I wrote 1998, it was a typo. My daughter was diagnosed in 1988 and denied claims for the four months before she started in the local school system. You have to understand how insurance companies operate. I was in management in Insurance (Property & Casualty)for many decades.

    If a claim examiner has any reason to question the validity of a claim and they are encouraged to do so, the company just has to deny the claim. The majority of claims never get past the initial denial even if the denial was without merit.

    In the end I was completly reimbursed, not because of a review by the health provider but rather because of the intervention of the CEO of the firm I was working for. The health provider went to great lengths to state that it had not accepted the validity of the claim but rather called it a single case ‘accomodation’ at the request of the policy holder’s CEO.

  49. Petie October 22, 2014 at 05:53 #

    ABA is not the same as behavioral support staff, because ABA is typically only about 20 to 40 hours a week, so what happens when ABA is NOT there? OR when the behavioral occurs at night or any other time, when ABA doesn’t provide services? For instance, an autistic person waking up at 2am and biting themselves? Or waking up at 6am and punching their face? OR transitioning from home to car to drive 45 minutes to a doctor’s appointment, where they have to wait 24 minutes in a waiting room, then wait another 22 minutes in an exam room, the entire time biting or punching themselves? If ABA isn’t there then what? THat’s where you need behavioral support staff.ABA, while helpful, is mostly temporary, intermittent help that does NOT address the needs of people who need round the clock behavioral support staff! If behavioral staff isn’t available then congress needs to examine the fact that we need laws protecting autistic people who exhibit ROUND THE CLOCK behavioral issues that arne’t even being met by the minimial ABA services we have. So then what? What would be cost effective? There should be a law that says that there are some autistic people who have behaviors that are so intense, so pervasive, that there should be special grants or funding to help those with these unique needs. ABA is helpful, but it is not nearly enough to meet the needs of the autistic people who exhibit round the clock behavioral issues that just don’t magically end after the few hours ABA is there….

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