Autism therapies and insurance - IACC discussions

One of the most shocking (to me, at least) presentations at yesterday’s IACC detailed the status of insurance coverage for autism behavioral therapies around the country.  Peter Bell of Autism Speaks presented a number of charts that showed a mix of hopeful and disturbing news.

On the hopeful front, he showed a chart of states that have passed legislation making autism therapy a medical treatment, as opposed to mental health counseling, which gives better coverage through private insurance plans.

Yet at the same time he highlighted the extreme differences between individual insurers within some states.  Even now, one family on a street can have a kid receiving 40 hours a week of therapy where a family two doors down has a kid who gets next to nothing, do to different employer insurance policies.

That is a disparity we should continue working to eliminate.  As he said, we’ve come a long way.  Five years ago, almost everyone was in the same boat, with no coverage.  Now quite a few people have some coverage, but “quite a few” and “some” are not words a progressive society should be using when it comes to autism interventions that are life changing.

Unfortunately, there was more. Peter went on to cite a few states whose programs have denied behavioral therapies on the grounds that they are “experimental” or “not proven to work.”   I thought we were past that kind of shabby behavior.  I guess not.  I immediately opened a dialogue to discuss how that could happen.

When a new drug is developed, the Federal government (via the FDA) reviews test results and approves it to treat certain conditions.  We’ve all heard how vital FDA approval is to the success of drugs.  That’s because the FDA stamp of approval means the drug will be accepted as a legitimate treatment for the conditions it’s approved for anywhere in the US.  An insurer cannot decline it as experimental unless it’s prescribed for something outside the range of its FDA approval.

I was shocked to hear that there is no analogous mechanism for approving behavioral therapies in this country.  As NIMH Director Tom Insel explained, in the absence of a government approval system insurers look to the professional organizations themselves.  What do they find?  There is a good national program (BCBA certification) to train and certify ABA practitioners.  The result – ABA is the most (indeed, the only) broadly approved behavioral intervention for autism.

Why?  Because it’s the only one with uniform delivery standards nationwide.  I know – many of you will tell me the quality of ABA varies widely and I agree – but the BCBA training standard is indeed uniform and it’s the all we have.

However, as someone who is working to get new therapies developed and deployed, that state of affairs is totally unacceptable.   

I’ve written about new therapies on this blog, and indeed many show great promise.  Their effectiveness has been shown in many studies, yet they are not widely available, and rarely covered by insurance.  Why?  Because there is no way for an insurer to know that the intervention being delivered in North Dakota is the one designed and vetted at UCLA (for example).

University research centers develop these therapies and even do training to propagate them in the field.  Important as those efforts are, they cannot roll out a new intervention on a national scale to augment ABA.  It’s just not realistic for any single group to undertake that except over a period of decades, which we do not have.

So what do we do about this?

I think we need Federal action that mandates insurance coverage for a much wider array of behavioral intervention.  Valuable as ABA is, is it not a path that works for every kid, and frankly, it is “old news.”   We need to get our insurers covering the deployment of new therapies that will help a broader range of kids.

Dr. Insel and I talked about that after the meeting.  He shared my concerns, and suggested this is a problem we could address but it would require legislation that would be resisted vigorously by the insurance industry.  He told me there are groups working on this very question is other fields, like depression.  His comment made me wonder if we need to band together to solve this as one lobbying group.

The fact is, many behavioral interventions have been developed and proven to work for depression, autism, and other conditions, but they are seldom covered by insurance because they are not classified as medical treatments and they lack any equivalent of FDA approval.

I want to thank Peter Bell, his group, and everyone else who has worked so hard to get the insurance coverage we have today.  And I want to thank him for opening our eyes to the true nature of the next obstacle we must surmount – the development of a mechanism by which new autism therapies can be delivered and covered by insurance.  Without that, all the intervention in the world will be worthless to most people, because they will have no way to pay for it it.

And that is wrong.

John Elder Robison is a member of the IACC, but the opinions expressed here are strictly his own.


That is one lobbying group that I would certainly support. Thank you for your work John.
Unknown said…
Thank you for this write-up on what you learned about the current state of policy on insurance coverage for autism therapies yesterday. I would also support & donate time for work in this area.
Anonymous said…
One thing we "non-drug enthusiast" people see is that if it makes money (i.e. drugs) for corporations, it seems to be promoted with great fanfare. If it doesn't make money -- i.e. individual practitioners who deliver therapies without drugs -- it seems to be a much harder "sell" to have coverage through insurance. We need to develop more systems of recognized benefit that are NOT dependent on drugs, drugs that claim to be "standard" in their delivery, but, in fact, are NOT standard in their effects on people. Sometimes drug therapies are adhered to with little result or bad effect, but are prescribed over and over because they are "supposed" to work, and are making money for someone, even though they aren't working as they are supposed to. It's all about art more than science, and if an "artist-therapist" is successful with children according to records and parent response, that should be covered, not because some scientific journal has done a study and a drug company is making lots of money, but because it WORKS for that particular child/adult. It's like we've abandoned judgment in favor of come disconnected therapy unrelated to the child's actual needs. I hope Obamacare will take a more reasonable approach to helping these children and adults, since it should be more about service and less about making money.
Unknown said…
Researchers need money to do quality studies and the NIH is not inclined to fund these. Also, it's very complex. Each person responds differently to interventions due to individual characteristics as well as environmental characteristics. It's impossible to control for these factors. We need to stop focusing on the "Gold Standard" clinical trials and recognize that other types of research are just as valid. And, clinical judgement is probably the most reliable factor in determining what works.
Unknown said…
This is a great and informative post. I'm sorry to trouble you with this, but could you possibly post the link to where you talk about other behavioral therapies?

I live in England at the moment and we're light years behind the US when it comes to all things Autism. It's really bad. So bad my husband and I decided that I would move to the States to get my son access to better care/opportunities (special schools in the US cost a fraction of what they do in the UK and the standard is much, much higher).

I had to apply to an American graduate school so I could get the visa for myself and my two children. I decided to go into an M.Ed in Special Education, and also get certified as a BCBA. I would like to know about the other behavioral interventions available though, I'd like to find out as much as possible.

Again, sorry to trouble you, but I'd really love to read more about what you have to say on these issues.

Best wishes,
Pam Terrell said…
I am a speech-language pathologist and professor of communicative disorders. This is an important issue, but also a very messy one. The thing about behavioral therapies is that they should be dependent on the individual and his/her strengths and weaknesses. As such, there really can be no homogeneous, nationwide criteria or approval for an intervention. I frequently tell my students that if they see a book or therapy product that touts "Here's How to Treat Autism...or Down' Syndrome...or Stuttering" that they should run the other way. In university coursework and clinical training, we expose them to different techniques, theories, and schools of thought, but (much to their dismay sometimes) we don't necessarily teach them "how to do therapy" as much as how to assess individuals and critically think about and develop a personalized intervention. With any disorder/disability, but especially with the broad spectrum of autism, there is no one-size-fits-all intervention.

You are certainly correct that ABA is routinely the most reimbursed behavioral intervention. Personally, I find this shocking and disheartening. ABA is a one-size-meets-all approach and the "trained professionals," called line therapists, are usually high-school graduates with a few hours of training in autism. That is greatly concerning. Also, as a tax payer, I am chagrined that my money goes to cover 40 hours/week of intervention through state programming, that I believe is not the most efficacious. ABA teaches skills through classical behaviorism, which is the same way that a dog is trained to sit and stay. Humans are much more complex, with language and communication being incredibly involved and nuanced. Having children repeat words and point to pictures for an M&M does not readily translate to joint attention, expressive language, reciprocal play, and improved social skills with different people and in different environments. There is also an awful lot of pseudoscience out there that preys upon desperate parents who only want the best for their children. Unfortunately, some insurance is paying for this as well...or parents are paying out of pocket in hopes that this hot intervention will be the golden ticket.

I share your concerns, but I don't see an easy solution. Parents need to be very informed consumers and ask the providers of treatment for a strong peer-reviewed evidence base for any intervention, regardless of the payor and coverage.

Marsupial Mama, you sound like a great mother who wants the best for your son! Some other interventions are: DIR/Floortime intervention (which is a "boxed" intervention, but the best of those, in my opinion, SCERTS, pivotal-response therapy (a more functional and naturalistic ABA approach), social thinking, social stories, etc. I don't necessarily advocate any particular behavior therapies. However, I think the plan should be individualized based upon the sensory, educational, cognitive, emotional, and communication needs of each child. Theoretically, I am a big fan of social interactionist approaches.
Secret Sunshine said…

I'm sorry, but you're just completely misinformed about ABA therapy. It is absolutely the opposite of a one size fits all approach. Because of the extensive data taking, if a method is not working, a new method is introduced. If a child struggles in one particular area more than any other, that is the area that programs will be built around. Also, in its broadest implementation, it is simply a good way to "win friends and influence people" so to speak. All animal behavior is based on motivation and reinforcement, including us humans, so your likening it to dog training is rather redundant. Yes, you teach a dog tricks by giving them treats. You also teach your child to behave by reinforcing desired behavior and setting consequences for undesired behavior- whether or not a child is typical or has special needs. And it's just completely dishonest to vaguely mention psuedoscience in the same paragraph where you are bashing the most scientifically sound treatment for autism that is available- indeed, it is considered Best Practice in regards to treating autism.
Secret Sunshine said…
And, honestly, I have a hard time believing that ABA therapy is routinely covered more often than, say, Speech Therapy. Interesting listening to an SLP in particular gripe about its coverage.
Anonymous said…
John, I agree that lobbying is probably going to be the best way for this to happen, in conjunction with possible changes that Obama-care may bring. Thank you for your tireless energy in promoting our understanding of the inner workings of the beast called bureaucracy!
P Shane McAfee said…
Thank you for this post. I just began following this blog. I am currently reading "Look Me In The Eye". I find your analogy about conversation being like crossing the street with someone who is wheelchair bound to be very concise and humorous. Thank you for your enlightening work.


Carolyn said…
Thanks for the post and, more importantly, your advocacy.

Funny, we were recently informed that our child w/Asperger's "isn't Autistic enough" (quote) to meet the criteria for counseling at the only medical facility within 90 miles of our town. (Clarification: facility that accepts our insurance.) Of course, he could still participate locally if we either a) pay out of pocket ($175/hr) or b) travel 2 hrs away for every weekly appointment.

Sometimes it seems that the folks on the "fringe" of any "scale" are just as at risk as folks who fall within the "range," due to the fact that the "fringe" gets no support whatsoever but we're not, ahem, *normal.* Not only in the Autism community, but socially as a whole. (i.e. middle-income kids don't qualify for college financial aid, the low-income kids get aid/grants and the high-income kids can afford it; LD kids and gifted kids at school are left out but the kids who "color within the lines" receive education at their intellectual level.)

Thanks again for your advocacy and the time you take to educate the masses.
Unknown said…
Autism is a dreadful disorder, which affects an individual's ability to communicate and associate with others. Generally the symptoms are detected in the first three years of the child's life.
Autism Treatment
Unknown said…
This comment has been removed by the author.

Popular Posts