There is one very important thing that is missing in the call to action on insurance reform put out by Autism Speaks. It is posed as a call to end insurance discrimination. To end insurance discrimination for autism.
Why only autism?
If there is insurance discrimination (there is), it is not limited to autism. We are part of a larger disability community. Therapies for people with autism (such as speech an occupational therapy) are often denied because insurance plans often include specific exclusions for developmental disabilities.
While much of the discussion on this site has focused on ABA, speech and occupational therapies are both commonly used with children with autism and are expensive. ST and OT can easily run $10,000 to $20,000 per year. Easily.
Is it right for insurance companies to deny benefits based on disability?
Is it right to call for an end to discrimination, but only for autistics?
I say no to both.
Left Brain Right Brain 
Hi Sullivan –
I’ve got different ideas on this based on what I think is best and what I think is possible, at least in my country (the USA).
In many instances, I think (?) that the rationale provided by insurers is that autism is not defined as a medical condition, but rather behavioral, and thus, doesn’t merit insurance coverage. This is one of the consequences of this classification which in large part, fuels my disagreements with many frequent posters on this board. Do you have any examples of developmental disorders that everyone might agree are medical conditions that fit within the specific exclusions for developmental disabilities?
If you want anyone with experience to give your child Speech therapy in my town, you are looking at $120/hour plus $400/$500 for an initial evaluation. (Graduate students at the University are $60/hour) At two hours a week, you pretty much hit 1K / month and numbers to make an insurance number cruncher get a dry mouth.
Unfortunately for everyone, therapies like speech and occupational don’t fit well within the paradigm of medical reimbursements; break an arm, get a cast, and the billing is done with, have a heart attack, get a bypass and the billing is done with. How many hours of speech therapy does a chld need until they don’t have an autism diagnosis? Insurance companies see our children as black holes.
I like the notion of insurance coverage for these kinds of things, but I’m not sure that a private model of insurance will be able to support them. Ultimately, I’m of the belief that in the long term, society saves more if these children get therapies early and intensively, but only a government run plan could try to attempt such a thing, and there are plenty of problems with those too.
– pD
pD-
thanks for the comment.
I can’t find the exact language to quote right now, but I know that my plan has exclusions for either developmental disability or developmental delay. They were kind enough to point this out when I first asked about ST and OT.
The medical/behavioral question is one to consider–except that in many plans (mine included) medical and behavioral treatments are included in the one plan. Also, it is hard to place ST and OT as behavioral. We can (and have) discussed questions about whether areas like speech and motor impairments are directly related to autism, comorbid or completely separate from autism. But, when an insurance company (like mine) states, “we will not pay for ST and OT since your kid is autistic”…well, for the sake of that argument, autism/speech/motor are related.
You are right that this is the sort of question they will ask. But, it is the wrong question. One need not cure, nor seek a cure in order for a treatment or therapy to me medically necessary.
The underlying question is what you mention: are these children “black holes”. I.e. how long will this go on? How open ended is this therapy? Is the child actually benefiting and making progress? Those are the questions the insurance representative will (and should) ask.
Re: autism as a black hole
Well, I guess that’s what happens when people talk about “curing autism”, or even just treating it. Naturally, private insurers don’t want to throw money at something that doesn’t actually cure autism. They feel the same way about talk therapy, preferring treatments that have definite short-term courses and yield good outcomes (based on research) to wishful thinking (which is what talk therapy looks like a lot of the time). In a way I don’t blame them, and it does force people to be more practical in terms of finding treatments that actually do the job. You can’t fund everything, no matter how much you might want to.
One of the other issues around treatment is that it’s important to look at readiness. If a child is not ready to go through a particular developmental stage, (or an adult is not ready to deal with a particular issue) no amount of treatment will change things. I think people will need to move to a modular Montessori approach to “treatment”, and development in general, at some point, just because it will probably work better. Plus be easier to assess.
(Sure to offend everyone with these comments, but what the heck.)
Anemone
test
Many people receive insurance from employers that self fund their insurance. No insurance coverage law will cover you if your under a self funded insurance plan that doesn’t provide insurance for the area you would like. Most large employers are self funded plans. This seems to be missing in this debate. It doesn’t matter what Autism Speaks does or if there is health insurance parity. If you are like most Americans, you are under a self funded plan and none of these laws apply to your plan. The point is moot for a large percentage of people.
This isn’t the case. ERISA covers self funded insurance programs.
Also, if the government overhauls all of the way health insurance is handled in the US, the self-funded loophole is definitely on the table.
So insurance companies don’t want to pay claims – this is a surprise? Check their “business model”. They’re happy to sign you up, receive your payments every month, but not so happy when asked to cover a claim. They find ways to deny coverage, and have pages and pages of iron-clad mumbo-jumbo designed just to give themselves an “out”. Fight the “real” battle, and work against insurance companies themselves. People, especially children, should have any treatment they need, but the prices you quote above are exorbitant to begin with, for a “product” of dubious value, and you wonder why they don’t want to pay?
Yes, much of the focus here has been on ABA, and the reason for that is because there’s so much to be said against it! Sorry you don’t realize that it outweighs the benefits you hope to receive.
Clay, thanks for your comment,
I would repeat that I think the proper approach is to end insurance discrimination against people with disabilities. Just as I don’t think it is right to legislate ABA into a law (more on that soon, I hope), I don’t think it right to legislate it out. Let the science show what should and shouldn’t be considered “medically necessary”.
Should children with autism be denied OT, physical therapy, speech therapy coverage under insurance in order to keep ABA out?
Take that a step further: should children with other developmental disabilities be denied speech therapy or OT or physical therapy in order to keep ABA away from autistics?
I’m not trying to trap you or anything, but don’t you think that language that specifically excludes children with developmental disabilities is wrong? I would certainly think that legislation that would allow for ST/OT/PT would be a good thing.
Leaving ABA aside for the moment, do you really think that those overpaid ST/OT/PT “professionals” are able to accomplish something that parents cannot accomplish? Let’s ask jypsy about that one. Of course, if you’re too busy, working and whatnot, well, we all makes our choices and we takes our chances. It all depends on your priorities, I guess.
“This isn’t the case. ERISA covers self funded insurance programs.”
Erisa outlines the reporting and fudiciary requirements of private insurance plan administrators. It has absolutely nothing to do with what an insurance plan must cover. In addition, self funded plans are even exempt from state rules.
Click to access consFaqERISA010909.pdf
http://www.dol.gov/dol/topic/health-plans/erisa.htm
Yes.
At the very least, I think they can do it in a lot less time. How many parents have an OT gym in their garage? I do, but that was my priority to spend the money and my time on it.
I also do believe that for many cases “leave therapy to therapists and parenting to parents” is a good idea. For the parent that doesn’t have the resources, or is faced with bad therapists, do what you can. No question. Parenting is by nature “on the job” training. But when you add ST/PT/OT to the mix, there is even less room to make mistakes while learning.
A basic rule of thumb that applies to therapy from therapists or parents–bad therapy is worse than no therapy. I can not say with certainty that I would be able to avoid giving bad therapy.
Some parents will make excellent therapists for their kids. Some not. Just like out of any mix of people, some would be good at a specific job, some not. I think that given a lot of training, I could be an adequate therapist. But, there is something extra that makes people who are excellent at what they do.
Experience does count for a lot. An experienced person might say, “Oh, he/she has this problem. Well, what I’ve seen work for that before is often X, Y or Z”. When I read a book to learn how to be a therapist or try to learn on my own, I may not know about the options. I may not know when something isn’t working and when to continue.
As far as keeping my job–well, if I want to keep my job in order to put money away for my kid’s future, that is a good priority. If I want to keep my job so that my insurance will also pay for medical expenses in case of illness or accident, I think that is a good priority as well. I realize that I am very lucky to have that option.
@Robert Blakely–
My insurance plan states on the first page that it is an ERISA plan.
Here is a good paper that discusses the ERISA loophole
http://papers.ssrn.com/sol3/papers.cfm?abstract_id=503482
@Robert Blakely—
My insurance plan states on the first page that it is an ERISA plan.
Here is a good paper that discusses the ERISA loophole
That’s nice Sullivan. If you have a private insurance plan, it falls under Erisa. Did you read the links I gave you? If you had, you would have read that nearly all private insurance plans fall underneath ERISA and that ERISA has NOTHING to do with individual coverage levels for various plans, its just fudiciary reporting requirements that it covers, mainly. ERISA doesn’t have anything to do with particular coverage levels for anything.
Your link doesn’t refute what I said. It was simply a link to an opinion from a law school professor. Please read the links of the actual law and what it does. Geez!
“As far as keeping my job — well, if I want to keep my job in order to put money away for my kid’s future, that is a good priority. If I want to keep my job so that my insurance will also pay for medical expenses in case of illness or accident, I think that is a good priority as well.”
Sorry, I didn’t know you were a single parent, and that’s just an assumption, based on what you just said. Come to think of it, I don’t know anything about you at all. Was there some sort of “introduction” when you started blogging, and I just missed it? If not, I think there should have been, just as a courtesy. What I’d most like to know is, how come you get to “berate” autistic bloggers for making a constructive criticism, or for their choices of blogging topics?
What if autistics don’t want to go along with supporting Autism Speaks, for our own reasons, while you support them for your own reasons? Just shows who’s in charge here, I guess.
Sorry if I gave the impression that I am a single parent–I am not.
I did not give an introduction when I started blogging here. I apologize for not giving out more information about myself, but that is a decision our family made.
I do not have the right to berate anyone. Autistic or not has no bearing on it, either way. I am truly sorry that the exchange between myself and Ms. Dawson was taken that way, and the mistake was mine.
I do not support Autism Speaks. If it wasn’t clear before, I hope it is clear now.
The person in charge here is Kev. It is, after all, the blog he created and runs.
But I am responsible for my own mistakes. I have made many, including in how I reacted to Ms. Dawson’s discussion of the login problems on this site.
Swedish problems
http://doctor-cheat.blogspot.com/
xmsrlong@yahoo.com—
I don’t have time to respond completely–yes, I messed up on ERISA. Could you check your email for a message from me?
In Sullivan’s defense, I think he has concerns non-parents don’t and couldn’t understand unless they have children.
He has done a lot of autistic friendly blog posts, sent some to me before posting for perusal and comment, but, when he posts those, no one seems to give a damn judging by the lack of comments.
By the way, my name isn’t Robert Blakely.
But, Sullivan doesn’t know what he’s talking about when it comes to ERISA.
I do think his heart is in the right place and he has reached out to me so I give him some props.
Sullivan wrote:
“I apologize for not giving out more information about myself, but that is a decision our family made.
I can understand that, there are certain people who make a policy of harassing, provoking, blogging about certain leaders of our community, even going so far as to cause problems IRL. I didn’t really need or want to know your real name, full name, state or even country you’re in. Just that a little introduction would have been nice, preferably one that indicated your “status”. Got it now, NT parent of autistic child. And no, you are Not automatically considered an “enemy”, far from it, as I wouldn’t have expected Kev to put in someone who was actually “opposed” to autistic views. That, and I know many NT parents of autistic children who are very much on our side. Good allies. I even know some past and future ABA therapists who are on our side!
It’s just that often, people in that position just naturally tend to see things from a different perspective, and don’t really understand autistics’ positions on different issues.
“I do not support Autism Speaks. If it wasn’t clear before, I hope it is clear now.”
It isn’t really clear, because you do support Autism Speaks’ support of that bill, one that we honestly believe would be harmful, not only to autistics, but to their parents, if they choose not to provide “medically necessary” treatments. We find that ad disingenuous, misleading, bollocks and an outright lie. See this blog:
http://aspergersquare8.blogspot.com/2009/07/silent-neighbors.html
“Sorry if I gave the impression that I am a single parent—I am not.”
It was a foolish assumption on my part, made because mothers used to take on most of the child-raising duties. It’s a different world now, families need two incomes. Understandable, but still, it’s a choice.
Thanks for clearing up who “Robert Blakely” is. I really wasn’t in the mood for any more mysteries, such as the ones he brought up in his most recent post, which you deleted, but just responded to. Oops, that’s another subject.
Just to be clear–I am not saying I am above criticism on my views. Far from it. But, if Autism Speaks supports something I support–ending insurance discrimination–I can support the idea without supporting the organization. I find that the AS position is wrong from a fairness point of view: the idea of singling out autism amongst all the developmental disabilities is unfair to me.
If I can use an example–let’s say that Generation Rescue came out with a call that Autism Speaks, and all organizations purporting to represent the issues of autistics, must include autistics in prominent positions, with directions driven by autistics.
Sometime after you checked if hell had indeed frozen over, wouldn’t you be in the position of supporting the idea, if not the organization?
My apologies, I thought you had deleted a post, it wasn’t there when I wrote the above, but it is now. Sorry.
“Thanks for clearing up who “Robert Blakely” is”
Hi Clay. Yep its me. I’ve tried to change my Yahoo id but Yahoo insists I’m Robert Blakely and after hearing on TMOB that Yahoo is the most easy login id to use on the site, I went for it.
“You can call me Bob, you can call me Jay, you can call me Ray…”
IF, Generation Rescue called for Autism Speaks to include autistics in prominent positions, and be driven by autistics? Can someone help me out here, isn’t this “reductio ad absurdum” or something?
It may not be too absurd to ask that the flagship of Neurodiversity be driven by autistics, though.
About my earlier mistake, you didn’t delete a post, only a sentence or two of it. That’s how it temporarily disappeared, and got out of sequence, with you appearing to respond to it immediately before it. Oh, and if you check your spam folder, you’ll probably find your message to him bounced. I’ve tried using that address, that’s what happened to mine.
Um, only the IF was supposed to be capitalized.
I meant, in bold. I’m done now. 😉
Clay,
you didn’t close the bold correctly–you have IF instead of IF.
I can edit it if you like. However, the “I’m done now” comment made me laugh out loud.
edited because I screwed up
Clay, the you have [b]IF[b] instead of [b]IF[/b] where I am using “[” in place of “<". But,you obviously know the right way to do it.
Yeah, you can edit it, and delete the last 3 (now 4) posts.
There’s a lot of “screwing up” going on tonight! 😉
Replace this one with this:
_____________________________________________________________
I do understand the necessity of asking the author to revise his post, and I wouldn’t want you to be targeted by those who enjoy targeting Neurodiversity proponents. And I know you’re a proponent, though we won’t always agree on everything.
[b]I wish I knew HTML[/b]
Just replace the brackets [ with wakas <, and you’ll have it. I like to use italics to set off what somebody else said, and bold is handy for lots of emphasis!
Do I know HTML?
Testing to make sure the ‘everything old is new again’ comment system is actually working. And closing the bold tags while I’m at it. You may safely ignore this.
Also, someone needs to close the <b> tag in Clay’s comment. I tried putting a closing tag in my post, but it didn’t work.
Like codeman38 I’m just test posting….
Testing here too [braces self].
Is the bold font due to Clay’s comment?
Awk! What have I done?
I took out some of the bolding–I wish I could fix it more properly.
I’ve added email notification of new comments. At least I think I did. Let me know if you have any problems.
Ooh, and there’s an option to edit! That will come in very handy! I like it.
This year in Australia our government has given $12,000 over 2 years to carers of Autistic children. It’s been a great help with our RDI, but as most of you know, it’s not nearly enough.
I do not understand why AutismSpeaks refuses to work with the national professional societies for OT, PT and SLP on policy issues.