#Autistic kids don't really need therapy, do they? -

#Autistic kids don’t really need therapy, do they?

Are you friggin kidding me? I’m a firm believer in there’s no such thing as a stupid question however, that is a stupid question. Of course kids with #Autism benefit from a variety of therapies.

You may be detecting that I’m a little fired up right now. Well, you’re right. 

We received a nice letter from the insurance company telling us that Emmett will no longer receive occupational therapy.

This is the second such letter this year.  I raised holy hell over the last one and got the denial overturned but it seems like they just never learn. They think that because Emmett hasn’t progressed to a normal level  that he will never progress. 

Pardon my french but that is bullshit.

Don’t tell me anything about budgets and cost, I get that. However, I also understand that if we short change our children, who are we and what have we become. 

Emmett is absolutely worth it,  just as every single one of your kids is. 

Emmett has made so much progress. However, when OT was pulled earlier this year, he quickly regressed. 

This is the last thing we needed.  However, this will not go unchallenged.

For anyone wondering, this is what a letter that tells you your child will never achieve, looks like.


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Well, my son has autism and other than speech, none of the other therapies ever really helped him.  His school gives him social skills training, group and individual counseling, behavioral therapy, adaptive PE and he does special olympics sports. His PANDAS is only medically treatable, and our PANDAS doctor has now refused to treat him because he doesn't believe kids with PANDAS can have violent rages. Many kiddos with PANDAS I know have violent rages.  I don't really think therapies would help him, to be honest, neither can we afford them after we have paid all the medical bills. Maybe he will outgrow some of these behaviors when he gets older, maybe not.


I understand that losing something that is helping your child is horrible. With that being said I hope you feel some gratitude for what you do receive as many of us receive NOTHING for our children, state funded insurance or through our private insurance. It is very hard sometimes to read your posts about what is not being handed to you when a lot of us have to work our hind ends off and  get nothing in return and I am not even looking to get a hand out just fair coverage. In Michigan up until yesterday or depending on when you insurance renews, Autism coverage was not mandated. Even though it is now, state funded insurance is not mandated to cover anything Autism related.  As I read your family struggles sometimes I  to wish my child received a fraction of the help your entire family receives.
I understand that health issues prevent you from working full time and therefore require the benefits that are provided to your family from the Federal/ State Government but please try and be grateful every once in a while because many of us get no help and have to do everything on our own, out of our own pocketbooks.
I know this post sounds a little angry and attackish but please remember just as you vent your feelings, I am doing the same. I am a little angry, I cannot even get speech therapy outside of school because my child has an Autism diagnosis. His speech problem has nothing to do with Autism yet nothing because of it.


I think that the bottom line, regardless of what type of coverage it is, medicaid, medicare, private paid by employer or partially, or self paid private- it is NOT adequate for our kids.  I pray that in 20 years we will look back on this time as "back when they weren't acknowledging autism as a medical condition".  I pray that all of the work that so many parents and agencies are doing right now will right this horrible and painful wrong.  We SHOULD all be grateful for what we get/have, but when it comes to our children, and their needs being fulfilled, it will never be enough until this issue is acknowledged and resolved.  I work for a medicaid mco and can tell you first hand that MANY of my patients are in situations like Rob's, where they worked very hard, and then for some reason couldn't anymore, usually for a health issue.  That is who that plan is set up for!  We all pay into it in case it is us someday.  In my opinion, Rob and his family are not being "handed" anything.  believe me, there are members that I would say that about- but this family is NOT among them.


@StacyMI I'm glad you feel safe enough to vent. I'm not offended. We're in the same boat, when it comes down to it.
We had to fight for everything my kids have received. We are on government funded insurance because I destroyed my back saving someone's life while I was working as a fire/medic.
Why we are where we are and why you are where you are is beside the point.
The bottom line is that ANY and ALL insurances carriers should be forced to provide coverage for our special needs kids.
These companies pocket millions if not billions each and every year because they are short changing our children.
I'm very grateful for what we have received and don't mean to sound otherwise. However, wrong is wrong, any way you slice it. Denying your child speech is just as wrong.
I'm angry for my kids. I'm angry for your kids and everyone else's kids out there being robbed of these necessary therapies.


I just spoke with OT and I have a tentative plan of attack. Unfortunately, it feels like I have too many battles on too many fronts. ;(


that's because you do!


@lostandtired This battle is the last thing you need right now.  I'm wishing you all the best!


I had a similar experience a few years ago with my son and OT and he still does not get the therapy. I to thnk it's bullshit that the insurance companies get to decide when and what therapy they "ok". Since when were they allowed to say what is "normal" or not!! These kids make progress on their own sometimes soon and sometimes not. I hope you guys get a break you really deserve it! If I was rich I would help ya out for sure!


@SarahBolier You're so nice :-). Thank you. Believe me, if my train ever comes in, I'll be doing the same for as many as I can.


Autistic kids do seem to regress easily, that's why it needs to keep going while they are maturing…*sigh..

Mary Franzen Costell

Oh, and behavior therapy? Ethan has gone from a totally non compliant aggressive chair thrower to a model citizen with 3 mo care. Insurance won't cover it.you know, let's wait for the penal system to help our kids.


@Mary Franzen Costello I'm totally feel your frustration. I think this will be the topic for today…..

Mary Franzen Costell

I have yet to find an ins co that covers any therapy with developmental delay. If Ethan had a brain injury he'd get speech, but Down syndrome, no way.


@Mary Franzen Costello I'm so sorry. I wish people would get their priorities in check. We can pay an athlete millions upon millions of dollars but refused to provide the essential therapies our kids need to have the brightest future possible.


He doesn't get title xix on a waiver?


@AnnMarieHakeHughes I don't even know what that is. I feel like I should now though. Could you explain… Please. 🙂


He doesn't get title xix on a waiver?


one last thing- when you are due for reenrollment, could you switch MCO's?  I work for united community and state (administers the same benefits, but not sure it is available in your area of the state- it's only in part of Ohio) and they are pretty good, of course I am biased.  and now you can tell me to shut up


ok, I am nurse, and a case manager for an insurance company (transplant coordinator, whatev), I have been going through this same thing with my youngest.  it may be a good idea for the OT to come up with a new diagnosis code- I am not saying it's "right" to have to try to beat the system, but it's necessary.  we had to petition my husband's hr dept- which I find absurd since they have no knowledge of my son's condition!  http://jackandnatesmom.blogspot.com/2012/10/insur
Here is my rant from Friday night.  I am sure that you have been around the block and know more than I do, but if your OT is supportive they "should" be willing to help you find a way around this….


@jjean3940 I'm gonna a check the link when I get home. The OT is willing to help. The other issue is that Emmett's about to lose speech as well .


Oh I'm so sorry you're going through this. That Insurance company seems completely insensitive. I am an OT myself and have worked with children with Autism for many years and know how needed it is! I really hope that you get this sorted!


@NigglyNoo thank you for your support and for working with our kids. 🙂


Wouldn't the fact that Emmett hasn't reached "normal" standards in 180 be MORE of a reason to CONTINUE his therapy? Presumably the company won't pay for therapy for kids who are now deemed "normal" … so who do they pay for?


@Gillian you make a very good point. Our kids future shouldn't be decided by some algorithm cooked up to protect the shareholders of a company that's supposed to be helping our kids.

Would love your thoughts, please comment.x
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