Insurance Coverage for ABA: On Treatment and Teaching
March 25, 2008 by Kristina Chew, PhD
Filed under Health
Last Friday, Arizona Governor Janet Napolitano signed House Bill 2847 into law, requiring private health- and disability-insurance plans to cover the diagnosis and treatment of autism. As the March 22nd Arizona Republic notes, the legislation specifically provides families with “better access to behavioral therapy.” Children up to the age of 8 can receive up to $50,000 in coverage per year, while children aged 9-16 would benefits capped at $25,000 (and go here for some earlier discussion of the legislation and the different amounts to be allotted to children based on their ages). ABC News has a March 24th report about the legislation entitled Insurance vs. Autism: For Parents, Insurance is a Personal Fight (but for a parent, is advocating for the best education and services and funding for these ever not a “personal fight”?) (and what’s with ABC’s use of a photo of a child with his face in his hands, as if suffering from some terrible despair—-this is my personal experience, but I actually don’t think Charlie has ever struck such a pose when deeply saddened…..but getting back to insurance coverage).
The ABC News story specifically notes that the Arizona legislation is to cover behavioral therapy, that is, Applied Behavior Analysis therapy or ABA. It is noted that a year of ABA can cost “up to $100,000″; this is how ABA is described in the beginning of the ABC News story:
Looking someone in the eye, waving goodbye, or speaking a single word may seem simple to the average person. But an autistic child may have to sit in a chair for eight hours a day, learning these tasks through painstaking repetition called Applied Behavioral Analysis therapy.
$100,000 is at the high end of costs for a year of ABA and ABC News’s description of ABA makes it seem rather a draconian teaching method to have a young child—-a young child with developmental delays—do for eight hours a day.
I say these things out of eight-plus years of experience with ABA: My son Charlie was just over 2 years old when he began an intensive in-home ABA program using the Lovaas agency. He did one year of intensive home ABA, then part-time preschool and ABA at home following the principles of a variant of ABA, Verbal Behavior (VB). Then he went to a series of special ed classrooms that said they were “based on ABA”; we pulled him out of one of these classrooms when Charlie had so many self-injurious and aggressive behaviors that his learning had come to a complete halt. The “ABA” used in those classrooms was what I would call “bad ABA” (to oversimply things grossly)—-what was called “ABA” was essentially behavior modification, in which Charlie sat at a table, did ten “trials,” made all kinds of errors and was sort of prompted, and given a primary reinforcer (i.e., food). (And banged his head on the table, more and more as time passed.) The programs were overseen by an out-of-district consultant who we rarely saw and who took at least a week to return the frantic requests of Charlie’s teacher.
We were fortunate to find a place at a private school that used ABA and Charlie went there until it closed; the teachers called him “lovely boy,” threw him a birthday party when he turned nine, and were in tears on Charlie’s last day. We had also started a home program (again using the Lovaas agency) for a few hours a week; we also moved (into my in-laws’ house) so that Charlie could attend the autism/ABA program in the school district. He has been in this program ever since June of 2006. His self-injurious and aggressive behaviors are minimal; he’s learning things no one thought he could and talking more and better (”I did yoga,” he told me with careful articulation when I asked him what he’d done at school this evening). We recently discontinued his home Lovaas program and have been looking for more sports and music activities, those being the two things that Charlie especially enjoys.
I’ve read a number of Stanley Greenspan’s books about Floortime and also considered Steven Gutstein’s RDI. ABA has a messy history (as Autism Diva has written about); it has been used by Lovaas to cure homosexuality. I think that some ABA professionals have done ABA (and themselves and, most of all, autistic children and their families), a disservice by suggesting that ABA can “recover” or “cure” a child of autism and that ABA is the only option.
For more son, the emphasis on structure and repetition and the use of discrete trial teaching have wokred well (keeping in mind that my son has a lot of challenges on numerous fronts—cognitive, communicative, sensory, behavioral). Charlie frankly seems more relaxed and “peaceful easy-feeling” when he has a lot of structure; it was in the period when Charlie was not in such a carefully organized educational setting that he floundered and became aggressive and a danger to himself and others. ABA can be readily transferred to a school setting, though Charlie’s ABA classroom involves everything but him sitting in a chair and staring into the eyes of a teacher saying “look at me.” (He really does do yoga at school, for Adapted Physical Ed, APE.)
But the main reason that I think ABA has helped Charlie is because of the therapists, the people, who teach Charlie, and because of the relationships he developed with them—-with so many therapists, some of whom rolled their eyes when the ABA consultant told them “you have to do it this way or he’ll never get it,” but stuck with it because they were having too much getting Charlie to laugh and learn. ABA has also been particularly effective for Charlie when combined with other things: One of his first ABA therapists was studying for her Masters in Speech Pathology and got him started communicating by teaching him sign language. Jim used modified ABA to teach Charlie to ride his bike and Charlie learned to read music and play the piano using ABA.
We’ve gone out of our way to find these good teachers, who tend to combine ABA with sensory integration; techniques drawn from Verbal Behavior, Floortime, and RDI; and a flexible attitude. Ultimately, we look to Charlie to see if the therapy is right and if that “peaceful easy feeling-ness” reigns. Though groggy from having to get up early after a week off for Spring Break, Charlie got right out of bed, pulled on his vest, coat, and gloves somehow and pulled the hood far over his head, and stomped out with Jim gently coaxing to wait for the bus (which was late)
Would I have appreciated insurance coverage for ABA when Charlie was younger? Yes, it would have helped (although, when Charlie was younger, there were times when we were just scrambling to get health insurance period, as we were both working a number of part-time and temporary jobs). Do I think that insurance companies should cover ABA because autism is (in the words of National Autism Association President Wendy Fournier, as quoted in the Yuma Sun) “‘treatable. Kids can get better and even recover with the right treatment’”? I can see the uses of this argument to get insurance coverage for autistic children, and I know that many families are on the edge financially to provide for their children in the ways they feel they need to. Still I prefer to say that my son is teachable, and highly so—provided that his teachers start not with a fixed methodology, but start with Charlie, with where he is, with who he is.
On the ABC photo; I’m going to bet that the boy in the photo isn’t autistic. Not clear one way or the other from the photo, but from the use of the caption, which doesn’t reference the actual person, or even an autistic person, it seems that is the case. Too funny/sad.
But that aside. I admittedly remember the Lovass program very little in any detail, and what I do remember is mixed in a way that one would expect from life in general except for that the exercises were pretty stressful. That’s to be expected, since I was three, and I’m pretty sure they remember me (actually, he and his immediate associates are the only people with the permission to call me Clifford).
I suppose, though, that I’d be a case study for the “cured” autistic, and I’ll be the first to say that if the intent was to cure me, it failed horribly. Now, I happen to think that was a good thing and have said so quite a bit(which proves, ultimately, that I’m very poor at acting in my self interest; I would have saved everyone an awful lot of grief and been able to write a (literally) pitiful “survivor” book). But it was the directive of UCLA.
Now, coming a little more out of the tail end of that, I can say that the mindset probably did more damage to my personal life than absolutely anything else (certainly more than autism!). When you have a construction in which the individual is “cured”, it creates some weird form of denial , and you’re basically throwing a lot of identity issues at seven year old children. Perhaps I’m not representative of that, since I tend to reflect a lot, but since it creates more circumstances in which one isn’t acting per normal, and at that age it tends to be chalked up to character faults. Needless to say, I didn’t have the highest self-esteem.
Now, am I faulting ABA itself? No, not at all. I think it was a great teaching mechanism for me, and I think in that regard it did me justice. But some of the assumptions of ABA therapists, regarding curation, have far more power to harm than not.
Of course, there is an unfortunate circumstance here; while this is more accurate, it is an issue, because otherwise it won’t be covered. It is much harder to argue a right to proper and decent education than it is to argue within a disease context. Testifying at a legislature, where indeed it was largely my testimony which did put through some funding, I kind of avoided both and focused on the skill sets, but even here I’m not comfortable with that context in entirety for its moral implications that I don’t agree with.
In an ideal world, I’d like autism to have mandatory funding under an education rubric. But it’s hard recreate that structure. And I’m not horribly optimistic regarding that actually happening.
But who knows?
Cliff
i’ve had a very positive experience with aba. went from 8 years of social isolation to having made several new friends this past year, something i would have thought impossible at an earlier time. i’m older (32), so the process is different…my therapist has really had to wing it…but i guess that’s the point: a good therapist will adapt to the client, not impose a cookie cutter format on them. three cheers for winging it.
The problem I see is the one-size-fits-all approach. I believe that ABA benefits some, but not all, individuals on the spectrum.
Yet I see it becoming the standard treatment (or education, if you will) for all. As Cliff concedes and as most ABA providers will admit, it’s demanding. So if a child (in my son’s case, a 2 year old) doesn’t need it, I think it’s wrong for it to be applied. And taking it a step further, in the Wired piece that was published last month, Michelle Dawson seemed to indicate that it wasn’t very humane in some circumstances. Now maybe that’s “bad ABA”; this is all new to me – I don’t pretend to be an expert. But the problem is that ABA – good and bad – is increasingly being regarded as the holy grail.
@Laura,
Yes, I think that is precisely the problem—considering ABA a “holy grail” (Michelle Dawson’s blog, Autism Crisis, is linked to in my post when I noted that ABA is sometimes seen as “the only option.”
I was interested in what M noted: Early Intervention in the form of ABA helped my son a lot. But ABA has also been helpful as he’s gotten older and has become much more aware and alert, and also had more “challenging behaviors” that can seen more challenging because of his age and his being strong.
But it does have a checkered history, no doubt about that.
I think the main problem is that there is more than one type of ABA, and when you get right down to it, everything we do that is teaching can be described in behavioural terms. But the Lovaas-only crowd (who are mainly found in FEAT ranks here in Canada, run FEATBC, and mean specifically old-style Lovaas type ABA) are adamant about what is actually called ABA.
A couple of months ago, the education day for work (we have one every month) was about Positive Behavioural Support (PBS). PBS is (gasp) a form of ABA. How do I know? Because it’s all about changing behaviour based on data taken. “Applied Behaviour Analysis” simply means that we’re to analyze behaviour and then apply what we’ve figured out in order to change the behaviour.
That presentation reminded me that I am, at my core, a behaviourist. Sure, I do play therapy now, but everything I do that encourages the children’s development can be described in behavioural terms, and I do take (anecdotal) data on every session.
I will be writing a blog post about this at some point in the future, no doubt about it.
The Lovaas therapists and consultant who worked with Charlie most recently were very flexible and adaptable to his needs—–whereas the consultant we had when Charlie started ABA in Minnesota was adamant that things had to be this way not that way. There’s more variation within ABA than is thought.
Make sure you leave a link to your post here—
My son doesn’t thrive with behavioral therapy if I’m identifying what I’ve seen correctly. He’s never received formal ABA, but at various times different school staff will attempt PBS. It just doesn’t work with him and makes him anxious. It seems to actually worsen his negative “autistic traits” because it emphasizes obsessing over single-action lessons and anticipating a reward. He becomes so stressed that failure is seen as a punishment and success is seen as requiring material reward.
Regular ed even utilizes this technique at his current school and my son has acquired “tickets” for good behavior from other kids. They trade them for food.
Pop has always learned better with integrated play. (Pamela Wolfberg) Surprisingly, we’ve complained so much that his current special ed class has started a type of integrated play group that includes Pop at the end of the school day. They kept seeing our complaints as requests for individualized care. Finally, I don’t know how, but they’ve realized that they need to teach play skills and more complicated social skills to the group.
@Janna
I can’t to get the copy/paste to work. It seems from what you’re saying that ABA is anything to do with a systematic appraisal of behavior – in which case practically anything can be designated ABA.
@ Kristina
Is behavior modification the ‘bad’ ABA or did I misread something there? If so then surely all of Lovaas falls under the umbrella of ‘bad’ ABA.
I’m not playing semantics here, but I have grave misgivings that ABA of the type that teaches things like concepts in tiny dissociated bits should be universally applied to any population and especially the autistic population. Maybe Charlie does not have much capacity for pattern recognition and therefore little to be damaged, but can the same be said universally of autistics?
This is all a bit weird.
1.Lets make everything you do ABA because it looks at behavior – which is what the kid does, which makes the whole thing completely non specific so that….
2.If you call eveything ABA, where’s the evidence base because….
3. the evidence base is solely concerned with ‘bad’ ABA – or behavior modification or however you want to label the empiricial basis for what is being done in behaviorist terms.
4. Not that there is any peer reviewed evidence for synergy between anything offered as an intervention and actual autistic learning preferences – not yet and perhaps never if ABA, the ‘good’ the ‘bad’ and the ‘ugly’ becomes the default.
Laura wrote about ABA-based autism interventions:
“And taking it a step further, in the Wired piece that was published last month, Michelle Dawson seemed to indicate that it wasn’t very humane in some circumstances.”
The “Wired piece that was published last month” does not mention ABA-based autism interventions.
None of my writing about ABA-based autism interventions mentions anything about whether these interventions are “humane.”
On the other hand, I’ve written quite a lot (with full sources and references) about how autistics who have not been in ABA programs starting early in life (which is most autistics in Canada) have been dehumanized and written off by those promoting ABA-based autism interventions.
My formal and informal writing about ABA-based autism interventions, the standards of science and ethics they represent, how they have been promoted by autism advocates, etc., is easily available online, along with all necessary sources, references, etc.
So if you want to invoke or comment on my views re ABA-based interventions, you don’t need to make things up. As I’ve written many times before, I always appreciate factual criticism.
sincere apologies. It was a New York Times article.
http://www.nytimes.com/2004/12/20/health/20autism.html?pagewanted=2&_r=2&sq=amy%20harmon%20and%20autism&st=nyt&oref=slogin&scp=3
ABA may have the unintended effect of causing its subjects to suppress the expression of pain when exposed to flourescent lights. I use the term “inhumane” to describe that. That’s my word – not anyone else’s and I shouldn’t have used some one else’s name. If anyone wants to disagree with that conclusion, go right on ahead.
@alyric,
Thanks for this critique—–my choice of “bad ABA” is imprecise, inelegant, and not the best choice of words. I tend to think of the kinds of ABA that have worked for Charlie as not what goes by “behavior modification” here in the New Jersey public schools and in other autism and special ed schools. But the terms are too loose that I’m using here.
Plenty to criticize in Lovaas and other ABA.
Also plenty to question in education and teaching in general: Are the grades I give my students on Latin quizzes the same as “positive reinforcement”? It has sadly been proven time and again that, without knowing they’re getting a grade, there is a huge tendency for no one to study……..
I’m not trying to convince anyone that ABA is good, bad, or ugly. As I’ve noted, with a lot of ABA and other teaching approaches, my son still struggles to read and speak and learn. ABA in combination with some other things—after trying many other things and therapies—has helped him to control the head-banging that had become dangerous.
I really appreciate the criticisms—figuring out what is best for Charlie is an ongoing project.
Eleanor has ABA based therapy, and it may be a minority view but without it she would not be able to do many of the things that she can do today that she enjoys. We try to manage the teaching so that it is associated with an improving set of of circumstances (aka fun) rather than a removal of pleasure. Just for comparison, we did try some of the less intrusive or alternative intervention models (floortime, traditional speech therapy and on an ABA basis, Pivotal Response Training). On reflection those were not helpful and difficult for her because she needed the focussed teaching to have enough prerequisite skills to benefit from the other therapies.
There are many different applications, not just intensive discrete trial teaching/training. There are some prerequisites that would indicate when that is not needed and a more natural environment based model is the better choice. What we do now looks like teaching most any other kid except that the skill is broken down when needed and not when it is not needed. My daughter’s behavior guides ME through observation and analysis.
Behavior modification, as I was told and seems to be true from some reading, differs in applying a program without doing an analysis of the function of the behavior being (often reduced) modified.
Positive behavioral support differs in having a more antecedent focus of modifying the environment to have a prosthetic function. It also focusses on person-centered planning. I think the tiered system of individual-classroom-school that they try to apply to improve the atmosphere of schools for all the students is interesting. On the whole I think of PBS as benign, but in a bad implementation it can be equally restrictive and presuming as anything seen as commented on as a bad application of ABA.
————–
Bringing it back to one point in the post–since when has the standard figure to quote become $100,000? It’s reminding me of the 1/94 for prevalence–where a figure gets quoted in one context and then becomes THE figure in the generalized sense.
ABA is anything to do with a systematic appraisal of behavior – in which case practically anything can be designated ABA.
———-
A cornerstone paper that defines the parameters of ABA is authored by Baer, Wolf and Risley.
http://www.pubmedcentral.nih.gov/pagerender.fcgi?artid=1310980
and the followup by the same authors
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1286071
A full description would require some browsing among about 20 different journals to see the research and applications.
Thanks, Regan—-the more I have learned about ABA, the more I’ve realized some of its basic principles are present in many kinds of teaching, and not only for autistic students (as I tried to indicate with my example of grades). “Typical” students need to learn thing in steps, such as how to write a long research paper; foreign language teaching often uses what might be considered “DTT” to teach a student how to translate a passage of Latin. To continue the analogy: Just seeing this, for instance,
quite overwhelms my undergraduate students. We have to take it one word at a time and look at so many things for each word (case, number, gender for nouns; tense, voice, number, person, for verbs, and of course the definitions of the words and how they are used in each phrase and sentence). Then we have to put the whole back together in a sort of “backwards chaining” exercise.
it’s not the only way to teach Latin but it gives students smaller pieces to figure out, and helps them build towards the whole. Also, I can see when someone is not understanding something if they consistently translate verbs etc. incorrectly.
Wouldn’t it be even more appropriate to integrate (non-aversive) ABA into the primary/secondary education systems, instead of burdening the healthcare maintenance payors?
My reasoning here being that … Isn’t the medical insurance supposed to be paying for health maintenance issues? And the educational system working on citizen (employee/taxpayer) socialization?
I am not saying that there isn’t a need for other involvement, i.e. age<5 early intervention remuneration. But that to include a non-medical therapy on a medical payer seems to be putting the burden on a target of convenience?
I can see where ABA could be used to promote health maintenance in situations like bathing and toiletting, but I’m not seeing where the majority of ABA time is actually medical care. Anyone got some persuasive reasoning to straighten me out?
Alyric,
I probably oversimplified everything. Behaviourism is about teaching new behaviours and changing behaviours using reinforcements. ABA, PBS, etc. – these all claim that in their titles. However, I note that most speech therapy techniques use behavioural techniques to promote communication, play therapy uses reinforcement to promote connection and play skills, and so on and so forth. I could probably observe a play therapy session and describe it in behavioural terms so that nobody would be able to tell that it’s not a behaviouristic approach. At the same time, a really well-done play therapy session should have invisible teaching – nobody should be able to tell you’re teaching; not the child, not observers.
I wouldn’t call what I do with the kids I’m working with now a type of ABA, because it’s not that kind of a paradigm. However, I definitely make use of my knowledge of ABA and behaviourism in my sessions with them.
KimJ,
It sounds to me like the people who are implementing “PBS” aren’t actually doing it properly. Done correctly, there should be a lessening of anxiety. But it all comes down to correctly determining “triggers” and reinforcements, and it HAS to be individualized for the student.
Patrick,
To my understanding, the ABA-as-medically-necessary-intervention folks are saying that since autism has to be diagnosed by a medical doctor, and ABA is “necessary” for an autistic person to become a “functioning/contributing member of society”, it must naturally be medically necessary. I think there is also something to do with ABA programs being psychological in nature, which makes them mental health-oriented.
However, I agree with you: by and large, ABA programs are NOT medical in nature. Most ABA programs have a large educational (read: academic) component, which certainly makes them the providence of the educational system, not the health care system.
I guess if you argue that autism is a function of dysteachia then it completely falls into the realm of education (although I wouldn’t hold my breath waiting for good behavioral training for all direct staff or a $50K/student budget (our district was in a tizzy because they might have to allocate $11K/student and having gone through district training, I have a pretty good idea of the limited idea of what ABA is). If IDEA was funded properly and the money spent wisely, I wonder how much stress would be off this situation?
If you argue that it is mental health, then where does it fall in the big picture of mental health parity? Are mental health disorders just “dysteachia”? Is the solution to go back to school?
If you argue that it is genetic or essentially medical then the comparison might be made to providing OT, PT or other related services for those with traumatic brain injury, other organic syndromes or those who have need of rehabilitative and in some cases habilitative services.
Off the top of my head things that might fall into the medical realm as part of a treatment team are complicated eating and sleep disorders, as Patrick noted, complications of toilet training, motor function, speech therapy (or maybe more aptly the communicative portion), functionally assessing SIB or aggression or positing change in medication or other, etc.
I’m not really arguing, or even thinking that I have a handle on this…it’s complicated and further complicated by the considerable sums of real or hypothesized $$$ involved. I think that in considering the triage that some math might be involved in how much is spent dancing around this (retainers for educational tort funds), appointment of multiple blue ribbon panels that report the same findings, Federal Special Ed funds returned to the federal govt (and sometimes $$ is actually sent back because it is not spent), other services delivered in a comparable policy (see the CAHI report) compared to that delivered in direct services to children, youth and adults. Sometimes it all reminds me of a gigantic shell game.
Jannalou, I’ve seen PBS in various environments in different states done by different people and the results always appeared the same for my son. One thing they had in common was using standard tools that had been used with other autistic students that weren’t like my son.
You’re right about integrated play therapy and with some background and dedication, anyone can do it with their kids/students. I think it can be easily done with a yard duty during recess even. But as soon as you say, “directed play” or “supervised recess” the school staff freaks out and says, “but we don’t have the money!!”
Regan
Thanks for the article from Baer and Risley. It’s certainly the cornerstone of ABA and the opening line sums up the empirical basis succinctly.
“The analysis of individual behavior is a
problem in scientific demonstration, reasonably well understood (Skinner, 1953, Sec. 1),comprehensively described (Sidman, 1960),and quite thoroughly practised (Journal of the Experimental Analysis of Behavior, 1957
-).”
Seriously, I couldn’t describe the vacuousness of ABA quite so well as this short paragraph. Note the ’scientific demonstration, reasonably well understood” – yes in rats and pigeons and there have been other explanations for Skinner’s experimental results, which didn’t rely on operant conditioning.
“comprehensively described by Sidman”, which i haven’t read but since when is description support for this approach? I have read Sidman’s seminal article on equivalence relations and that was a pretty good example of the breed.
“Quite thoroughly practiced” like description isn’t persuasive that this approach has merit. Phrenology in its day had many enthusiastic practitioners.
Alyric,
I don’t believe in appeal to authority either.
The Baer, Wolf and Risley was just to highlight what is posited to be the dimensions considered in order to say that research and application is applied behavior analytic. To say that defined as example in 1968 as that currently demonstrated might be inaccurate…believe it or not, behavior analysts seem to beat each other up quite a bit over what their science is describing and whether bias or cheerleading is being exercised.
On a single person basis I have found some of the teaching procedures useful in making curriculum accessible to my daughter, and the data analysis helps to keep me honest about whether I am seeing what is she is telling me through her response or what I wish to see.
In Oklahoma, a House committee refuses a hearing for Nick’s Law, which would provide for insurance coverage for diagnosing and treating autism.