America's Next Top Toddler Sensation Idol-Type Person
Oh Hey What Up?

Dear Insurance Company: Please Define "Effective"

Our insurance stopped covering Noah's occupational therapy back in November -- conveniently, right around the time we hit our out-of-network deductible, and actual promised benefits would actually have to be paid by them, but they indicated that they'd be happy to consider an extension of the coverage, so long as we provided them with X, Y and Z.

Two months later, they came back and said that actually, could we also send them W? And expand on Y? And provide some background on Z? 

And we did, and Noah's therapists did. We got doctor's notes and his school typed up reports and then longer reports and then the insurance claimed we hadn't sent something that we actually had, and on and on it went. For seven months. We continued to send Noah to therapy, the claims we submitted anyway came back rejected, the bills piled up unpaid. For SEVEN MONTHS.

Then finally, a decision: 

Scientific legitimacy for sensory integration therapy has not yet been established. While accepted by occupational therapy standards of practice, there is disagreement in the medical community to the effectiveness of sensory integration therapy.

Rejected.

***

Noah never got mosquito bites, or at least, that's what I thought. I rarely, if ever, saw any welts, even when my arms and legs were covered in them. I assumed he had some kind of immunity to them -- if he did get bit, he didn't swell up, he never scratched. 

He never scratched anything, though. The ugly, scaly eczema that plagued him every winter seemed to bother me more than him. He hated the feel of lotion though, so sometimes I just left his skin alone, since he wasn't complaining. 

This winter, when the dry skin appeared, he scratched his body so hard he broke the skin, peppering himself with tiny scabs from his fingernails night after night. The itching, it turned out, was unbearable.

And this summer, he definitely gets mosquito bites.  I think he has all along. I just don't think he knew what to do about them. 

***

He walks barefoot across the grass, the beach, the scratchy welcome mat. He never used to.

He rides a bike, a scooter, the merry-go-round, the coin-operated cars at the mall. He never used to.

He says, "I'm thirsty." And, "I'm hungry." And, "I'm hot." And, "I'm cold." He never used to.

***

I remember the first time I heard him humming in his room, when he was supposed to be sleeping. I peeked in, expecting to see him singing to a stuffed animal or toy. Instead, he was violently rocking himself back and forth, flipping his head and torso back and forth, back and forth, with his hands tucked sweetly next to his cheek, in the sign for "sleep," though the fingers in one hand were wrapped tightly around a double-A battery, his attachment/transition object du jour.

He still stims. It no longer interferes with school, it's no longer quite so obvious to people who aren't looking for it, but I know he stims. He resets his vestibular system with a weird-looking full-body wiggle thing, and he still hums and lines up toys and squints at lights and chews on his fingers. Sometimes we can snap him out of it; sometimes he just needs to find his own way back to center. 

At night, though, he sleeps curled up with a stuffed rabbit he calls Knuffle Bunny. He hasn't rocked in close to a year.

***

I told another mother at camp about the insurance company's decision, bitching a little about the fact that if they really believed SPD/SID was bunk, they wouldn't have approved all those earlier sessions in the first place, or sent us on that seven-month paperwork goose chase, so WHATEVER, YOU CHEAP JERKS. Her solution: Take him back to the doctor and ask for a different diagnosis, one that they'll cover. 

The funny thing is, if we'd been able to see a developmental pediatrician last summer, I have no doubt that we'd have left with a PDD-NOS diagnosis, at the very least. But there was a wait, and by the time Noah was re-evaluated, he'd been receiving speech and occupational therapy twice a week for several months. "He's just...not," we were told, when it came to the Spectrum. He's a lot of things -- SPD/SID, dyspraxia, low tone, language delayed, extremely bright, this and that and this  -- but he's not any one thing that matches up with any one diagnostic checklist. Maybe he was, at one point, but not anymore, I mean, look at him

I'm sure, if we had pressed the insurance angle, we could have gotten someone to commit to a Spectrum diagnosis -- a diagnosis I've been accused online of purposely avoiding or not admitting to -- but all I ever really, genuinely wanted for Noah was the right diagnosis. We had it. I thought that would be enough.

***

Scientific legitimacy for sensory integration therapy has not yet been established. While accepted by occupational therapy standards of practice, there is disagreement in the medical community to the effectiveness of sensory integration therapy.

I respectfully, emphatically beg to differ.

Noah-070710-1

Comments

Sprite's Keeper

You couldn't just send them your website link? The evidence is all over it!
I can't stand insurance companies and their black and white jargon. The shades of gray never stand a chance.

samantha jo campen

I HATE HEALTH INSURANCE COMPANIES. Anyone who works for them. I hate every single thing about them.

I am so so SO sorry. We have $7K not covered by insurance for my son's BIRTH. Which was NORMAL and NON COMPLICATED.

I'm raging for you. RAGING.

Suzanne

As one who said my kid is different to the peds for three years before his principal (PhD in special ed) insisted on testing him in Kindergarten, you're doing all the right things. You just got his diagnoses early-so that PDD/NOS (or in our case, Asperger's) diagnosis did not have time to fully percolate.

For your sake, for Noah's, I am so glad you were able to intervene early. I just wish the Insurance company realized how much money they will save in the long run if they pay for all of these therapies NOW.

Keep at them. Heck, print out all the blog posts detailing Noah's journey and give them a link to the blog. Let them see that this stuff WORKS.

Dawn

UGH. Ugh, ugh, ugh! How, with all of the information out there can they not say it's effective? I agree with Sprite's Keeper - send them the link so they can see for themselves. Shame on parents for wanting to help your children. The gall!

LauraC

Appeal! Appeal it all the way to the top!

I think I left a similar comment a long time ago. One of my twins needed a helmet. It was not covered by our insurance bc they do not accept the helmet as "accepted therapy." We went ahead with the helmet and appealed the decision ALL THE WAY TO THE TOP.

It ended with a committee meeting hearing where I got to present our ENTIRE case. Preemie twin A, torticollis resulting in plagiocephaly, 9 months in PT with demonstrated developmental delays. Shit felt AWESOME to say to a committee.

They still denied it but I got my say. And it got delayed SO LONG in the appeals process that our hospital decided to write off the cost. FREE.

And then I went to my company's HR and gave them all this documentation and they renegotiated their insurance contract and helmets are covered in the current plan.

I was irate as well, but knew we were doing the right thing for our kid. You know you're doing the right thing.

APPEAL!

liz

GAHHHH!!!!

Kristine

God, stories like this make me so angry! I mean, your writing is beautiful, and you're obviously a thoughtful, loving, dedicated mom, and this post gave me goosebumps... Just...insurance companies...ARGH!

Kristine

God, stories like this make me so angry! I mean, your writing is beautiful, and you're obviously a thoughtful, loving, dedicated mom, and this post gave me goosebumps... Just...insurance companies...ARGH!

Wendy

Grr. I hate, hate, hate the insurance industry. I'm glad Noah is doing so much and so obviously better but I'm so frustrated on your behalf. Our healthcare system is a national shame.

Jodifur

Our insurance is covering OT for just low muscle tone. It's funny, how just checking a different box changes things. And the insurance industry is terrible.

Heather

Oh god, they just plain suck. At least for now the dyspraxia/hypotonia dx has been enough for us.

Jenny

My SPD kid never was covered for OT and PT and Psychiatry under an SPD diagnosis, we always had to call it something else, a physical thing, a speech thing, a hearing thing, a fine/gross motor thing.

Good luck...

Heather

Oh god, they just plain suck. At least for now the dyspraxia/hypotonia dx has been enough for us.

Jenny

Oh, Amy, how frustrating!! I agree with the other posters here: appeal, appeal, appeal. And send your own documentation as well as that of your doctors and the schools, demonstrating the effectiveness of Noah's therapies. Insurance companies will deny as much as possible in the hopes that most people won't fight the decision. Sometimes they will make coverage determinations just to make you GO AWAY. Other times they will just keep on denying. But you'll never know unless you ask. And then, keep asking!

Out of curiosity, would these services potentially be eligible under a flexible spending (FSA) or health savings account (HSA)? Just a thought. GOOD LUCK!!

sheilah

Insurance bastards! Our crummy insurance company won't cover an X-Ray to diagnose Evan's broken ankle. WTF?? Isn't that a basic diagnostic tool? If we had a CAT scan or an MRI that would be covered, but an x-ray...Nah!

...rocking...rocking...back to center...

Noah is gorgeous (as is the mighty Ez - love his stink-eye). What beautiful boys you have.

Heather

I'm sorry. :( Boo to the insurance asshats. But hooray to Noah's improvements, and to that big ol' smile on his adorable little face.

Melissa

Putting on my wonk hat:

(1) Appeal. Ask how to file a formal appeal. Keep all documents related to appeal, including fax transmission sheets and try to do read requests for email.

(2) Let them know that you plan to file a complaint with the Maryland Atty General's office: http://www.oag.state.md.us/Consumer/HEAU.htm Seems awful suspicious that they deny you right about when the out-of-pocket cap was about to be set. You can see if your insurance company has a lot of overturned decisions by looking at the 2009 report: http://www.oag.state.md.us/Consumer/HEAUannrpt09.pdf

Unfortunately, I know there is very limited scientific evidence about such therapies and many states (NY being a notable example) lack of well controlled clinical trials means no coverage. In case you haven't already, you might want to read these from Cigna and Aetna to see what you're up against (http://www.cigna.com/customer_care/healthcare_professional/coverage_positions/medical/mm_0283_coveragepositioncriteria_sensory_auditory_integration_therapy.pdf and http://www.aetna.com/cpb/medical/data/200_299/0256.html)

That doesn't mean you can't try or make them look like mean bullies. You're probably in Van Hollen's district; might want to try his constituent services rep for help (Martha Marrazza or Gary Parsons)

G.G.R

That makes me so mad =0( I hate insurance companies =0(!!!

Elizabeth_K

Just donated some money for unpaid bills. SOBs at insurance companies. DAMN THEM! You are amazing, your son is amazing (well, they both are, but this is about Noah), and I owed you anyway, for all the entertainment. But yes, APPEAL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

A Dad

Why must you make me tear up at the office?

longtime lurker

Beautiful post.
If I were you, I'd, I'd call the MD Attorney General's office. MD has some great consumer protections http://www.oag.state.md.us/Consumer/HEAU.htm

Heck, call your Senators. Mikulski is on the HELP committee and is very active on health issues. Congressional and administration folks have been able to bully insurance companies into doing a lot of stuff through public humiliation, so perhaps the same could be done here.

Things should get better when health reform takes effect in 2014, but that doesn't help you now....

Caitlin

I read your blog and rarely comment. Yes, I'm one of those people. But this post made me tear up at work and be ever so grateful I live in the UK where I don't have to deal with health insurance! I'm from Northern Virginia - no kids yet - and will have to make the decision to move back to the US at some point...and this very thing worries the hell out of me. Thanks for sharing all these years and so happy for Noah.

Caitlin

I read your blog and rarely comment. Yes, I'm one of those people. But this post made me tear up at work and be ever so grateful I live in the UK where I don't have to deal with health insurance! I'm from Northern Virginia - no kids yet - and will have to make the decision to move back to the US at some point...and this very thing worries the hell out of me. Thanks for sharing all these years and so happy for Noah.

Katrina

Amy, this may not help at all, but I work for a State Representative and we've managed to get insurance decisions like these overturned for our constituents. It may not work - all offices are different in terms of their responsiveness and abilities, but it's worth a try - you should find out who your State Representative and State Senator are and call them both.

Katrina

Amy, this may not help at all, but I work for a State Representative and we've managed to get insurance decisions like these overturned for our constituents. It may not work - all offices are different in terms of their responsiveness and abilities, but it's worth a try - you should find out who your State Representative and State Senator are and call them both.

Frannie

I wonder if I can ask a question? If you did not see a developmental ped. who gave the dx of SPD? We are in a similar situation (and have an appt. with a dev. ped. for SEPT.!). My son's therapists have diagnosed my son, but I was told by them to get any insurance coverage, I need to see a dev. ped. Granted my son is most likely pdd-nos, but seems
"on the line" sometimes. Thanks for you site -- it is a joy to see Noah doing so well.

JB

Stories like these make me SO mad. I'm pissed on your behalf.

Stories like this will keep happening as long as insurance companies are out for the profit. I would be interested to hear, if you have any international readers, how their care differs with (**gasp!**) socialized medicine.

Now imagine if our firefighters/police were "for-profit," instead of socialized as they are currently. "We've discussed it and the cost of putting out your fire is not worth it to us, you live too far out, it would cost US too much."

Aimee Greeblemonkey

Ugh, Amy - I have so many beefed with Insurance. SO MANY. Add this to the list.

Jan Ross

I have a suggestion about the eczema; I get it really bad on my hands - so bad they crack and bleed. Try Lidex cream. It's prescription and make sure you don't the the generic - it's greasy and awful. This cream is like a miracle and will heal up eczema literally overnight.

Sorry about the insurance - that bites.

Anna Marie

I hate dealing with insurance companies. My son has a wide variety of diagnoses and gets OT for his sensory issues, but the therapist has to call it something different so she can get paid. The whole industry is screwed up and stories like yours just make my head explode. Why must people have to fight SO HARD just to get proper care? Whew. This comment is all over the place because I'm so angry for you. But I'm also so happy that Noah is doing so much better.

Brandi

I am so, so sorry Amy. That is some serious muthafucking bullshit. Those sneaky, greedy, scumbag bastards are gonna burn for shit like this one day! I think and appeal and a call to your congressional rep would be a good idea. But if that doesn't help i'm all for finding out where these fuckers live and egging their luxury cars and leaving flaming bags of Ceiba poop on their door steps!

In other news, I am so very glad to hear about Noah's progress! It's the only thing that is keeping my head from exploding with rage!

Cheri

Amy- also try your state's Department of Insurance- you can get info,and possibly find out if other ins companies do cover it. Definitely appeal!

Lady in a Smalltown

My insurance wouldn't cover PT and biofeedback for pelvic floor muscle/vestibulitis issues because "there is no proof it works." I would say the fact that I concieved a child is proof, but whatever. I appealed, they denied. When my coworker had similar issues our gynecologist gave her a slightly different diagnosis and they covered exactly the same treatment!! Grrrr...

I am so glad to read about Noah's progress. You have worked long and hard to get him where he is. I hope things continue to work out so well.

Kyla

Have everyone redo the paperwork and call it fine motor delays. Fine motor is an acceptable use for OT as far as insurance is concerned. Idiot insurance companies.

Jen L.

I agree--send them your blog link. I hate that you're going through this. Also? The insurance company sucks balls. That's all I got. That and mad love.

Bethany

I'm so sorry. That's just crap and makes me sad that we didn't get a "real" public option. For profit insurance makes zero sense to me. What about publicity? Something in the Washington Post to help shame them? I thought I'd read that some changed their minds after publicity and if nothing else, the publicity angle might help a govt. representative work harder on your behalf to overturn the decision, esp with the sleazy angle of not telling you this until after you'd been paying for awhile.

This is part of why I'm afraid to have kids--I don't think I could ever figure out all the paperwork inherent with kids' insurance. Good for you for fighting.

BretCB

I'm with everyone else; submit again, appeal, tweak the name of the condition / treatment on the paperwork. He needs it, it's working, and this is exactly the kind of reason you have health insurance

Liz

I'm really sorry they rejected you. But this is a beautiful post. Makes me teary. He's wonderful.

Karen

Amy,
I'm also sorry to hear this news...though I am not surprised. We will be on that road next year with speech therapy. When we lost coverage, I replaced OT with gynmastics and karate since I was paying out of pocket anyway. It seems to have similar benefits for us. We also have all of the tunnels, trampoline, and scooters our therapist used at home. We do our best.
You might want to check into local farms who offer therapy horseback riding for free. It is wonderful for sensory integration.

Speech is another story for us, since that requires more know-how than I possess. They say our son is talking so he couldn't possibly need speech therapy. Dumb, uneducated people make the decisions that impact us.

Kerry

Yup, thats why tons of parents of high functioning kids wants the label. It gets them services. The label is scary. If you read the literature on ASD, it says "life-long" which obviously scares parents, whereas the info on SPD says "treatable" which is much more optimistic. I think they need to change the info out there on ASD. With early-intervention it is something that can be outgrown.

Kerry

Yup, thats why tons of parents of high functioning kids wants the label. It gets them services. The label is scary. If you read the literature on ASD, it says "life-long" which obviously scares parents, whereas the info on SPD says "treatable" which is much more optimistic. I think they need to change the info out there on ASD. With early-intervention it is something that can be outgrown.

MichelleH

I'm so very sorry that you have to deal with that. I myself am only now learning what hell it can be to deal with the insurance companies for a surgery my son needs....but nothing nearly as complex as what you are dealing with. How does the person who printed that letter and sent it to you sleep at night?? Don't they get that they are dealing with real people and that this is your child??? Why bother with all that paperwork if they were just going to poo poo it all as pseudo science? If it is helping him, it is worthwhile...PERIOD.

Erin

Ugh, I'm so sorry. But the first thing that came to mind was not that someone out there doesn't believe in the legitmacy of treatment... but that insurance companies will do ANYTHING to avoid paying. Doesn't matter what you're treating. I think we're all screwed healthcare-wise until insurance is no longer for-profit. I like the idea of submitting something to the Washington Post that someone mentioned above...

With that being said, I'm so glad Noah has made such leaps and bounds! Go Noah go!

Theresa

Amy, three words: MOVE TO CANADA. We have all that stuff figured out up here.

But in the meantime, sounds like you have to be the squeaky wheel...

Thanks for sharing all of Noah's progress, too. Kind of a feel-good/feel-bad post all in one!

Valerie

Oh I am so mad for you! I AM SO MAD.

Liza

I am in your shoes, so much that there are tears of rage in my eyes. Our problem is not with our insurance but with the school district. My 7 year old son was diagnosed with Sensory Integration earlier this year. The school district, despite having that diagnosis and recommended support needs from his doctor and therapists, says that they can't provide the support he needs unless he's diagnosed on the spectrum. They even suggested talking to the dr. about getting an Asperger's or even an ADD diagnosis.

While I would call my son a green alien with three heads in order to ensure that he gets the support he needs, it's bullshit that he needs a diagnosis that he doesn't have in order to get support for the one he does have.

All this to say, I'm sorry.

Therese

Well, that just totally sucks! I understand that Insurance companies need documentation but come on... I used to work at a physical rehabilitation hospital and we dealt with this constantly, especially with our outpatient peds clients. This was 8-10 years ago and we had a state of the art sensory integration gym. I handled marketing and spent a great deal of time talking to physicians and parents about how to classify diagnoses so that children's therapy would be covered...it was ridiculous and exhausting!

Life of a Doctor's Wife

Health insurance is infuriating. I am so upset for you right now (delighted at your son's progress, though! Yay Noah!!!). It really seems like health insurers look for every possible way NOT to help you.

Have you tried filing a complaint with the insurance commissioner? This is really easy to do, and the one time I did it, I got an immediate response from my insurance company. (Totally different health issue, but still.)

Good luck - I hope you kick that insurer right in the wallet.

Deb

I can't imagine how horribly frustrating this must be. And that is really all I'm fit to say about that.

You, however, get better and better and better with this blog thing alongside your beautiful Noah's electrifying and amazing progress.

Whatta buncha cuties y'all are. Whatta joy to read about you.

Deb

I can't imagine how horribly frustrating this must be. And that is really all I'm fit to say about that.

You, however, get better and better and better with this blog thing alongside your beautiful Noah's electrifying and amazing progress.

Whatta buncha cuties y'all are. Whatta joy to read about you.

tracey

Shit. I am so sorry. I hope you guys can continue to get him the therapy he obviously is thriving on....

charlotte

See how they're pitting the OT community against the "medical" community? IOW, if Noah's condition could be treated with pills or with a scalpel, there'd be no doubt that it falls within their funding guidelines.

I'd suggest explaining the situation to a dr and seeing if there isn't anything that can be done about the diagnosis.

Heide

That's just sickening. The insurance company part, not the gains Noah has made. Our insurance company rejected our son's SPD evaluation after the provider called to get pre-approval... now we're in fighting stage. Good luck.

April

Our insurance only covers OT for brain injury or stroke victims, so I am kind of surprised you even had a chance at coverage. At this point, we're used to having to fight everything. We did make sure we got a diagnosis that has legal meaning so we would have no issues with the schools for IEP purposes and there are some states where insurance companies, by law, have to provide coverage for certain services for kids on the spectrum. It's criminal that they don't cover it, but they are exactly correct in what they sent you as a response. There is a lot of disagreement in the medical community about SPD, BUT there is also next to no research being done about it to change that! There needs to be a concerted effort to scientifically evaluate all of these treatments that are being recommended for these "spectrumy" disorders and give no only parents but legislators and insurance companies the guidance they need to do something about it. So much money is being spent refuting the stupid claims about vaccines that treatments and protocols that actually WORK aren't being investigated. Gah, sorry for the rant.

Heather Ben

cheap bastards!

appeal! appeal!

sick the mother bunny on them!!!

Amy

un-freaking-believable. Insurance companies are heinous institutions. As a teacher I see various forms of SPD/SID every day. It breaks my heart that their parents are at a loss, and don't seem to know where to go and who to turn to. I have followed your telling of Noah's story and watched him triumph over his sensory issues and applauded you for pushing for answers instead of throwing up your hands and giving in. He is an amazing little guy.

Barb

First, try to appeal it. Is this possible with your insurance company? If not, set up a paypal account. We'll all help you. Hell, I've donated a few times - once to help "Notes From The Trenches" football team go to Florida for the playoffs. We're all in this together. Noah has brought us great joy. You're an amazing family!

Anonymous

My insurance company has a brand-new special policy regarding OT: only approved if it's from a physical injury. Car accident, great. Issues, forget it.
Nice, right?

Mermil

Health insurers are in it for the money, not for the good of their members. Plain and simple. My father was a psychiatrist who worked for Blue Cross Blue Shield before he retired. He hated it. The turning point was when he was presented with a case where someone drove into a plate glass window of a restaurant. Blue Cross didn't want to pay for the patient's medication or for the inpatient therapy he [CLEARLY]required. "He drove into a restaurant," my father told us, still incredulous.

Lauren @ Hobo Mama

Wow. On the one hand, super yea that it's working. On the other hand, boo to the insurance company for not seeing that. So so sad.

I have so much I could say about insurance companies, but I will refrain before my rants fill your comments page. Just know I am disgusted along with you.

stacy

aaaarrrggghhhh.... I am so MAD on your behalf!! seriously, F-you, insurance companies! YOU SUCK!

I am so sorry that the "right" diagnosis is the "wrong" one....

Heather

I read your blog all the time because my daughter has sensory issues too and it's so helpful to read about what other families do to treat it. We had to have our daughter diagnosed with gross motor skill deficiencies (not sure what that falls under when coding the insurance forms) before our insurance would cover OT. My daughter has also had a lot of success with gymnastics (as another poster mentioned) for working on her weak trunk and vestibular issues. Hopefully SPD will be included in the next version of the DSM coming out in 2013. You can find good information here http://www.spdfoundation.net/dsmv.html.

Plano Mom

Tell Jason to take all the things he wants to do to the insurance company right now, and do it to the mice in your house.

Olivia

We've been without health insurance for the last 4 yrs for various reasons (Though my daughter is now covered on the state medicaid). Stories like this make me a little bit grateful that I haven't been giving my money to those insurance bastards.

statia

We actually did end up with a spectrum diagnosis, which in the end was ultimately what worked for us, because I'm sure as you know, PA has that wonderful (yet annoying and frustrating) medical assistance.

But I see such insane similarities between your Noah and my boy.

I don't really have a point here. But I hope in the next year or so, we see the progress you're seeing.

tiffany

I would definitely appeal, and if that gets you no where, SUE the insurance company. You have in writing that you would be covered. But all of a sudden you aren't covered. They aren't fulfilling their part of the contract. Don't take this lying down -- FIGHT!

Katie Kat

Insurance companies and airlines are the two biggest rackets in the world. PISSES ME OFF. Why does the patient (or parents in this case) have to do all the work? Why don't I get to decide if paying my insurance premium is "effective?" It's MY money g-dammit. Give it to me when I need it. SHEESH.

Jessica

As one of those very much despised people who works for a health insurance company, I want to say I am so, so sorry. I only work for one myself so that my family can have health coverage. When I was unemployed my Asperger's kid actually qualified for our state funded insurance and every kind of therapy imaginable. Now...not so much. Thank God for our school system and the amazing work his school therapists and teachers have accomplished.
A little secret from behind the scenes of the evil insurance empire..nearly every company has a team dedicated to making you happy. You pitch enough fits, you call enough, appeal enough, they will do whatever it takes to keep you as a customer. I have seen situations where members have received personal cards, bouquets of flowers, gift cards, and ultimately, they get claims paid. It's ridiculous that such a department even exists, but they do.

Mouse

I'm going to agree with those who suggest getting an "updated" diagnosis. Basically, instead of just an SPD diagnosis, get someone to break out components like "fine motor delay." Our son's school-provided OT is officially for his motor-skill issues, but the therapist does plenty that deals with sensory issues. He also got a separate anxiety diagnosis alongside the Asperger's. Our insurance will cover cognitive behavioral therapy for anxiety, but not for autism, so we had it approved off of just that one part of the diagnosis.

Hairy Farmer Family

Such a beautiful, wonderful boy (boys!) you have there, and one that reminds me so much of my own.

I... have nothing to add. But would like to offer hugs. Big cuddly hugs. And, if there wasn't an intervening ocean, I would totally deliver a trailer of cow shit to the insurance office of your choice.

JennyMooMeow

I have to agree with everyone else that you need to keep appealing. It is the insurance company that believes they need to make money, not to take care of the insured people they take money from.

It is your responsibility to remind them they are supposed to pay up when they are obligated to do so.

My sister and bro-in-law worked in insurance for years. It's all about who you can squeeze policies out of, not who you actually pay for their claim.

Stand your ground!

Becca

I spent last Wednesday practically begging for a PDD diagnosis, because the doc wasn't going to put my little guy on the spectrum. However, she wanted him to have ABA therapy. I told her that I have already done the research, and the only shot in hell we have of paying for it is if we have a diagnosis on the spectrum. And that's a long shot too, because our current insurance won't pay for it. We're trying to get an individual policy for him that will...but....blah.....blah....blah.....We got it and I hope I did the right thing.

molly

about the eczema - have you heard about using hazelwood? some basic info on www.hazelaid.com

Jessy

They won't hear you the way you are going about it. Following others' advice, you should get a different diagnosis if that's what it takes, and file the appeals while going through local political and legal battles.

And find the data. That's what they make their decisions on, and that's what will convince them. I am in no way an apologist for insurance companies, but this is, in my opinion, the right mindset. If we want to insure everyone in a medically and financially effective way, we need to use evidence-based treatments. And anecdotes aren't evidence - data from controlled studies are. So stop saying "But look how much better he is!" and find some evidence that says "Kids get better with this treatment than without - and I have comparisons of controlled, large-scale studies to show it." Because otherwise they can reasonably (I use that word from a scientific perspective, not a mom perspective) say "But he might have gotten better without all that intervention." And ... they might be right.

Kids outgrow things, some symptoms of different conditions abate, some treatments that seem effective are worse than doing nothing at all despite miracle testimonials. Show them the evidence. And if it's not there, buy a bit less makeup and keep paying if you think it is working, and advocate for the damn studies to be done.

Jo

I work in a medical billing office and we can't, and won't, diagnose or change a diagnosis if the "insurance angle is pressed". It's fraudulent to do so, unless there is an out right mistake. The diagnosis has to match the supporting documentation. I guess what I am trying to say is don't beat yourself up over not pressing or making the request because the billers/docs most likely would have not been able to do much. I understand how maddening it all is for you.

April

I agree, appeal! I'm an audiologist who works with cochlear implants and we have found that when children get denied for a cochlear implant sending pictures of your child and requesting an in-person interview or defense of your position can really help. They have a much harder time saying no in a child's presence, I think! Good luck. You have done the right thing for Noah, regardless of what the insurance company thinks or says.

Virginia

Here's another vote for an appeal.

And call your representative's offices.

And while you're at it call Oprah and Dick Gordon and anyone else with a loud voice and huge audience who might be willing to shine just a little more light in the maggot hole we call the Insurance Industry.

adequatemom

I'm speechless. Well, actually, I have a LOT of words in my head right now, but the rule of "if you can't say something nice ..." prevents me from saying them. I bet that rule has an exemption when it comes to insurance companies, though ...

FUCKERS. (Whoops!)

kristiana

I remember being pregnant and calling the insurance company before every single doctor visit asking them to specifically detail my coverage and what the visit would cost me (I had a low white blood cell count and had blood drawn a number of times during my prenatal visits).

Later, of course, the bills came, sometimes for 5x the amount quoted and when pressed, they would say that they had outlined the cost for a 'test' and what I had had done was a 'procedure' or blahblah...

It is their internal policy to deny every claim they possibly can and they use all the jargon and legalese to overwhelm and frustrate you because you have better things to do and they have hives of lawyers to do nothing but fight so they win.

I hate them. I hate them for you. I hope you appeal. At the very least, figure the cost of coverage and occupy them with forms and appeals until they have spent that dollar amount. Even if they don't pay up, at that point, at least they haven't won.

By the way, you are one of my favorite bloggers.

Jessy

Katie, you don't get to decide whether a treatment is effective because people are really bad at distinguishing real effects from placebos, or natural improvement. Insurance companies have a high bar for deciding what's effective - and the higher they set it, the more money they make. This is (part of) the case for non-profit health care: people who are capable of evaluating the evidence and making decisions on it absent financial biases.

Five minutes on Google Scholar turned these up. They are a start for making your case that 1. SPD is 'real' (still debatable, but some of the brain studies are providing good evidence), and 2. that treatment is effective. Use them to make your case - do it well and cc: it to media outlets.

http://209.169.7.42/pdf/ahn_miller.pdf

http://www.ateachabout.com/pdf/ValidatingSPD.pdf

http://ajot.aotapress.net/content/61/2/228.abstract

http://ajot.aotapress.net/content/61/2/209.short

http://www.usc.edu/projects/rehab/private/docs/researchers/parham/6_parham_evaluation_of_sensory.pdf

The most-substantiated conclusion is that sensory processing is a hallmark of autism. Perhaps it is time to revisit this diagnosis, since Noah is clearly on the spectrum.

maria

am sitting here in tears ..just frustrated for you. We are recently back from living in a national health country and I am still waiting for my DD to be approved to even 'see' the specialists she needs.. Nothing like Noah but she has her own issues. She was born with a cleft lip& palate so she has the issues of that plus she has feeding and drinking issues.. basically won't do much of either and she is 3.5..Sorry I digress.. Anyway, just wanted to tell you I find inspiration in your blog and more support that someone 'gets it' out there and just how painful it can be sometimes.. It has been a month and I still haven't heard anything from a speech, OT, dental,vision person.I am so angry..

maria

am sitting here in tears ..just frustrated for you. We are recently back from living in a national health country and I am still waiting for my DD to be approved to even 'see' the specialists she needs.. Nothing like Noah but she has her own issues. She was born with a cleft lip& palate so she has the issues of that plus she has feeding and drinking issues.. basically won't do much of either and she is 3.5..Sorry I digress.. Anyway, just wanted to tell you I find inspiration in your blog and more support that someone 'gets it' out there and just how painful it can be sometimes.. It has been a month and I still haven't heard anything from a speech, OT, dental,vision person.I am so angry..

Quirky Jessi

Ugh, 7 months is a long time to string someone along. I'm sorry. :(

Gail

Dear Stupid Insurance Companies: Do not, I repeat, do not, piss off a group of mothers who love Amalah...you can NEVER hope we will be on your side. We vote. And we are pissed.
Thank you,
Just One More Pissed Off, Activist Mother Out There

lolismum

I am with Jessy on this, who frankly is the only one approaching this with some intelligent and calm response. Anectodes of "look at him now, he scratches" is not exactly evidence of the wonders of OT. Kids get older, their nervous systems mature, they respond differently. As a scientist/researcher, I completely agree with Jessy that you need to find controlled studies that demonstrate the effectiveness of OT. I don't doubt that OT helps, and I am siding with insurance companies and their greedy practices, but unless you get a diagnosis and the treatment he will receiving is one of the "scientifically" , not "mommy-blog" approved options, insurance will not cover it. Is it ideal, of course not? Would I react with all sorts of emotions if this were my kid? Absolutely. But, at the end of the day, insurance companies do have a definition of "effective".

lolismum

That should read " I am NOT siding with insurance companies". Forgot the "NOT".

kris

I would like to point out that to those with issues such as - "Our insurance only covers OT for brain injury or stroke victims" - you should look into this further. Often it is something your company is choosing NOT to cover. So, if that is the case you should petition your HR dept. and your company to have that added to your benefits. It may be the insurance but make sure you find out for certain. We have no coverage for Speech Therapy unless it is for brain injury or stroke but that is because my husbands company opts for that in their coverage. It's a pain. And expensive.

Stephanie

I used to work for a Member of Congress on constituent services. It was my job to work on issues like this. Send a letter to your Member of Congress or your Senator, as a previous poster suggested. Sometimes just the threat of a congressional inquiry will get things overturned. Believe me. It worked a bunch of times.

Also, on a separate yet related matter. Insurance companies are like any other company dealing with consumers/customers. They want to deny or delay at all times. They make you do ALL the heavy lifting and then come up with excuses to deny/delay again. They're just hoping that you, the consumer, will run out of energy and stop complaining. Don't. They will cave.

SallyH

We are going through the same thing. Some $3500 in therapy not covered--though 22 sessions of the first 3 years was covered, so how can they say that it is ineffective now? The therapist wants us to get a PDD-NOS diagnosis and...I just don't think it is accurate. Could it fit him? Yes. He's got major speech delay and ataxia and learning disabilities and flappy hands when he's excited (he doesn't stim as far as I can tell but flaps to express excitement). But, still I don't think it is right. And god knows I'd embrace it to get him more therapy and to get it paid for...but...

I get it.

Kara

Hey Amy,

A few things- until the American Academy of Pediatrics and the American Psychological Association recognize SPD as distinct and separate from PDD/ ASD, then the insurance companies don't have to fund jack. One big problem with this is that very few studies about effective treatments have gotten into peer reviewed journals. Most of the research is funded by the OT's and the SPD Foundation who have a major stake in proving positive outcomes. There is a growing movement to have SPD included and classified in the next edition of the Diagnostic and Statistical Manual (DSM-V) of the American Psychological Association. The APA is now open to public comments for the new edition. A groundswell of support for and against certain diagnoses has helped to change the DSM all along (homosexuality was removed as a disorder in 1986 for this reason). The SPD foundation may have some more information about how you can make your voice heard.

I'm a special educator and I'm sorry to say that although you and Jason are doing everything right, you are not alone in your frustration over the insurance companies. You're a great mama and Noah was smart to pick such great parents.

Kara

Hey Amy,

A few things- until the American Academy of Pediatrics and the American Psychological Association recognize SPD as distinct and separate from PDD/ ASD, then the insurance companies don't have to fund jack. One big problem with this is that very few studies about effective treatments have gotten into peer reviewed journals. Most of the research is funded by the OT's and the SPD Foundation who have a major stake in proving positive outcomes. There is a growing movement to have SPD included and classified in the next edition of the Diagnostic and Statistical Manual (DSM-V) of the American Psychological Association. The APA is now open to public comments for the new edition. A groundswell of support for and against certain diagnoses has helped to change the DSM all along (homosexuality was removed as a disorder in 1986 for this reason). The SPD foundation may have some more information about how you can make your voice heard.

I'm a special educator and I'm sorry to say that although you and Jason are doing everything right, you are not alone in your frustration over the insurance companies. You're a great mama and Noah was smart to pick such great parents.

Kara

Hey Amy,

A few things- until the American Academy of Pediatrics and the American Psychological Association recognize SPD as distinct and separate from PDD/ ASD, then the insurance companies don't have to fund jack. One big problem with this is that very few studies about effective treatments have gotten into peer reviewed journals. Most of the research is funded by the OT's and the SPD Foundation who have a major stake in proving positive outcomes. There is a growing movement to have SPD included and classified in the next edition of the Diagnostic and Statistical Manual (DSM-V) of the American Psychological Association. The APA is now open to public comments for the new edition. A groundswell of support for and against certain diagnoses has helped to change the DSM all along (homosexuality was removed as a disorder in 1986 for this reason). The SPD foundation may have some more information about how you can make your voice heard.

I'm a special educator and I'm sorry to say that although you and Jason are doing everything right, you are not alone in your frustration over the insurance companies. You're a great mama and Noah was smart to pick such great parents.

Samantha

I don't know what to say about the insurance company beyond what previous posters have said. This is just outrageous. I just wanted to add that my daughter is almost two and has eczema and gets "eaten alive" by mosquitos that leave welts for two days-- and she never scratches. Ever. So don't feel like you were negligent. Maybe he really didn't itch, or it just took him awhile to learn to scratch.

April

Ironically, today I attended an educational session on insurance coverage. If your insurance is through a company that is "self funded" (instead of fully funded through an insurance company like BCBS or Cigna) you have a better chance of appealing by going to the HR department and pleading your case. Sometimes when it is an employee that they know they will re-consider the policy. Just another thought, for what it's worth.

GingerB

Amy, we just have to keep at it. I am denied hjppotherapy for my daughter with CP. In four weeks of sessions my daughter's hand is less clenched, more open than ever before, and she ate a fucking natural cheeto out of that hand. Ate. A. Cheeto. But my insurance says hippotherapy is not occupational therapy. Let's make a pact, we just don't stop fighting.

Christy

honestly, insurance companies piss me off. We've had battle after battle with the insurance companies and frankly I'm tired. This is what the insurance companies count on though.

Another mother told me to send in a pic of your child with your appeal so they can have a visual. Haven't tried it yet...

I don't understand how there is a disagreement in the medical community about sensory intergration. My son has CP and use to have HUGE sensory issues... couldn't be in a noisy area or in crowds, didn't like certain feels of things or cold/hot things and while we still struggle, he's doing much better.

there are a lot of people and web sites out there to help with the appeals process. I would try again... even though it sucks. Do you have a case manager that can help you? sometimes they know the ins and outs and what wording to use...

Laura in Michigan

Please, please appeal. I was reading one of the weekly newspaper "magazines" like Parade and there was an article about insurance appeals. 50% of appeals done by the patient are won for the patient on the first try. If you lose the appeal, and file a 2nd level appeal, well- 50% of those are won too. So- you have a very good chance of overturning their decision. It's tiring work, but could be worth it in the end.

Jaelithe

My family is going through the same thing with our insurance company. We just started our second round of appeal. I, too, have been encouraged to "just get him diagnosed on the spectrum" so we could get better coverage, so we could get help from the school district, so people would give him more sympathy . . .

But SPD is the RIGHT diagnosis. And occupational therapy is the RIGHT treatment -- I know because, like you, I have seen it working. Why should I label my son with a diagnosis that is not right when we already have the right one?

Plus I keep thinking -- if I give up on getting my son's REAL disorder recognized, how many more children and parents will suffer? How many more kids will go through life misunderstood and wrongly treated by doctors and teachers and insurance companies?

It is so frustrating.

Maria

This is our life right now. It's uncanny how often I read along and just nod, nod nod.

Glad to know others are walking the same path, but sorry too. Fist bump.

Maria

This is our life right now. It's uncanny how often I read along and just nod, nod nod.

Glad to know others are walking the same path, but sorry too. Fist bump.

The comments to this entry are closed.