#Autism: When you’re told there is no hope


Lizze and I are so pissed off right now I can barely write this.  Because of that,  I’m going to keep this short and sweet.

Basically,  we received a phone call about Emmett’s speech therapy. 

Emmett has been having speech therapy for 180 days now and has not progressed fast enough is not caught up yet.  Insurance has stated that Emmett will never catch up and so they will no longer cover speech therapy for him.

In other words,  they are essentially saying that there is no hope for him and that we should give up.

I don’t have words to express just how pissed off I am right now. I realize insurance is about the bottom line but who the fuck says something like that?  How do they sleep at night?

The therapists and staff don’t know what to say and they felt horrible having to call us with the news. I know they will do everything they can for Emmett and I can’t express enough gratitude for that.
My problem is with the insurance company. Emmett has made tremendous progress this past year.  It’s true that he has a long way to go but saying that he is incapable of improving is so far beyond irresponsible it’s disgusting.

I will go pick up a copy of the paper work tomorrow and read this for myself.  This is absolutely unacceptable and I will make them answer for this decision. I will wage war if necessary to ensure my son gets the help he needs.

Right now I’m venting and I’m sure I’ll take back more rational approach in the morning.

Remember I said,  I was beginning to lose hope. Shit like this doesn’t help….

**Thanks for reading**

       -Lost and Tired

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Posted from WordPress for Android so please forgive any typos as auto-correct and I don’t see eye to eye. 🙂

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Kim Williams

If he continues to qualify for services (clearly he does) then the school has to continue to provide those services based on his IEP, even if they are not reimbursed by your insurance company. Schools billing insurance/Medicaid for Speech/Language, OT, PT is still a fairly new thing. If the therapy you're talking about is private speech therapy, then if private insurance is done covering it, see if Medicaid will. If Medicaid is done covering it, see if you can get more sessions through EPSDT (separate pool of money from Medicaid.) In the meantime, someone needs to get over themselves. A decision like that is insane. Do they also rule no more PT for a kid with CP? Because he's not walking yet, we're not going to bother? This sort of crap just chaps my ass._

Silachan

http://www.ncsl.org/issues-research/health/autism

It's too bad to see that Ohio isn't in here. :/

Denise

Seriously?! It's horrible. Parents have to advocate SO MUCH it's soooo frustrating and it shouldn't be. This is where the wake-up call for autism intervention and treatments has to come in — these children NEED these therapies and they should be readily available and limitless — I've yet to find an autism-friendly insurance company 🙁 they all have limits and dictate how much and when it stops. very sad…when I was first looking into therapies and on waiting lists I came across Easter Seals and some programs they offer…I was ready to give it a go…Even my current insurance says 20 sessions a year….it's not much is it?…but we stretch it out and keep in going bringing homework home with us ….
My recent post Autism Traits common among healthy people ~ article

Maria Hall

Appeal the decision in writing. Does he get any services through DD? Maybe he can get some SLP services through them?

Molly

That's terrible, I'm so sorry. Insurance companies are the boil on the butt of humanity. All I can say is fight, fight, fight. They try this crap in hopes that people will just hang their heads and say, "Ok." Unless they have some sort of gypsy fortune teller on staff, there isn't a soul on earth who can tell you "never" about your wonderful boy. Good luck.
My recent post Born This Way

Lost_and_Tired

Thank you Molly. I\’ve cooled off a bit and I will begin digging into this tomorrow. I\’m hoping we can get this resolved in a relatively painless fashion. If not, it\’s game on… 🙂

Brandy Eastman

This is beyond insane. I don't believe that anyone at the insurance company is qualified to make any call on Emmett's progress. Unfortunately this is so prevalent in this community. I am so sorry this is happening to your family, but I know you are going to get to the bottom of this. Take care and know that we are rooting for you.

Connor's Dad

4 years ago when my son was 4 my wife and I were told "lets use sign language, Connor won't ever talk." We were told "just have him carry around a PECS book forever, because Connor won't ever talk." Well guess what-we said no, we don't care what you think, we are not giving up, and today, Connor talks. Being a parent of a child on the spectrum often feels like you're always swimming upstream, with everyone wanting to tell you what your kid won't be able to do. Well, to be blunt, fu*k them all, my son is going to have every chance to do everything anyone else can, and if it turns out that he isn't going to be able to achieve something, it's not going to be because I listened to so called "experts", who don't know what the hell they're talking about. Never lose hope Rob. Never.

Lost_and_Tired

Thanks. You\’re totally right. I will never take this lying down. The progress he\’s made in the last year has been amazing. He\’s basically gone from nonverbal to speaking in sentences and having a large vocabulary. Is still delayed? Extremely, does that mean he will never achieve effective language? Absolutely not. Hopefully this can be overcome. All I can say is God help them if they don\’t because they just stirred up a hornets nest. 🙂
Thanks for sharing that

autiesmama

Rob–I had a whole notebook of stuff that other people had used to successfully get speech therapy for Daniel when he was three. People used stroke-related diagnoses if it worked. It no longer does. I was so frustrated I started sending my insurance company pictures of my son so they could see just who they were hurting. Yes, unless the need for speech was birth-injury related, or the result of a cleft palate, my insurance said no. Over and over. I'll have to find a piece I wrote on how lucky insurance people were to be completely autism free…they surely must if they could deny services, right? I have "heard" that our insurance has changed the bottom line, but just the thought of wading back into that cesspool makes me hyperventilate. I have no choice, but I also have no doubt about the outcome. What the hell, right? I'm so sorry. I know this kind of anger and frustration. It sucks. –Leslie

My recent post Do You Hear What I Hear?

Lost_and_Tired

Thank you very much. I\’m gonna check that out tonight. Maybe I could share the post here. Would that be okay with you. I\’ll shoot you an email. 🙂

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