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THIS CHILD DOESN'T DESERVE SPEECH THERAPY

Marks_stuff_003_4By Kim Stagliano

We have new health insurance. It's just like our old health insurance. A lot of money for very little return. Let's see, we've had "Aetna, If you have autism we'll forget ya."  We've had "InHumana." We've had "Useless Healthcare." And now we have "Stigma."

Speech is not covered for my children. Why? Because the insurance companies have already decided that our children, including the beautiful girl you see here, will never catch up in speech. They don't believe Bella or your son or daughter even deserves speech. I spoke about this travesty on Good Morning America (watch here.)  Here's the insurance company's take on our kids.

Speech therapy is generally not appropriate for use in prelingual children when there is no identified underlying medical condition or there is no possibility  of the child reaching an age-appropriate level of speech (e.g., speech therapy for learning disabilities, autism, developmental delay or mental retardation; therapy provided for aversion to food, the inability to construct sentences, stuttering or tongue thrust) (Johnson, 2005; Bressmann, 2005; Kroll, 2005).

Kim Stagliano is Managing Editor of Age of Autism.

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Speech therapy? I had to move 1600 miles from my home because the school could no longer allow my daughter to attend due to her aggressions. I moved in with my parents and put my daughter on a wait list for a severe behavior program. Over a year for a spot to open. Then my insurance won't pay for it because it is not medically necessary - even though my insurance pays 80% of treatment for mental disorders.

Well, talk about kids who don't deserve insurance coverage. . .I just got off the phone with a woman at Rep. Ron Peterson's office. I didn't catch her name, but she's going to hear back from me if I don't hear from her again.

We went round and round, but the bottom line is this (bull%$^# alert): "Rep. Peterson doesn't support a mandate telling insurance companies what they're supposed to cover. . ."

"But it's the reason insurance companies exist. . .to cover sick people."

"Well, Ron Peterson is a non-mandate kind of person. . ."

"If it were a question of covering children with cancer, would he mandate that? It's a qeustion of what should and shouldn't be mandated."

"Well, let's say that 30% of the people covered would need this (for autism). . .eventually, the rates would go up, and all 100% of the people would have to pay for it. . .and insurance is so expensive. . ."

"YES! One hundred percent of the people would have to pay for it to cover the relatively few who actually get it. . .THAT'S THE PURPOSE OF INSURANCE! And we all know insurance is so corrupt. . .it isn't unaffordable because of the cost of covering sick people, it's unaffordable because it's completely unregulated and all of the money is going to the people who run the insurance companies! And they don't even cover people! Even people who can still afford health insurance find out that it's practically worthless!"

"Well. . ." Etc. Explanations of why I'll get nowhere.

Finally, running out of time, because I need to pick up my kids from school:

"Look, if not this. . .I want to know what Rep. Peterson is going to do about autism. I've got about a hundred thousand other parents who want to know, too. I want some forward action here. What is Rep. Peterson going to do about autism?"

She was clearly stumped. She wanted to stop talking to me. Then, she acted like I was going to get some kind of call later this afternoon! What!? No, I don't want a brush-off call this afternoon. I want to give Rep. Peterson some time to come up with an actual plan. And then I want to hear about it.

In fact, I need to call a couple of other people in the House, and ask them the same thing. . ."What are you going to do about autism?"

And if I don't start to get some answers that make sense. . .

Hey, what kind of dumb *&%^s are out there "representing" us anyway??

HE HASN'T THOUGHT ABOUT IT??

Well, they're gonna start to think about it, and they're gonna hear from me in the meantime.

This woman has two kids, I found out. The one I actually talked to. I suggested to her that they might have kids someday, and started to talk to her about vaccination; wondered how much she knew.

Whew!

Gotta run.

Hey, anybody else? Come on, a little help, here, please.

Terri L.

Robyne (and all who are following the progress of Nick's Law):

I've left a couple of messages with Ron ("have a blessed day") Peterson. I've not heard back yet.

It was impossible to get through to Chris Benge; I kept getting that "fast" busy signal, as if the phone were off the hook! Hmmm. . .

Any word from someone who knows more would be appreciated.

I'm also trying to follow up on any other deprive-our-kids-of-insurance issues. . .how's it going in Florida? Any updates on that?

Anybody else need some phone calls or e-mails to help get fair coverage for *all* kids who need it?

Terri L.

Robyne,

I've got both those phone numbers handy for first thing tomorrow morning.

Seems like lots of us could make a couple of phone calls and have the impact we need.

It's really a story that would even have the mainstream press on our side. . .like they already are in Oklahoma.

These two men don't just need to hear how terrible they are, they need to hear that the whole world is going to know about it.

They can have both of their names forever associated with those who throw away children so someone can make money. . .or they can have a "what was I thinking?" moment, and change course pronto.

I'm with you, Robyne! Let's get these jerks straightened out!

Terri L.

"Let's see, we've had "Aetna, If you have autism we'll forget ya." We've had "InHumana." We've had "Useless Healthcare." And now we have "Stigma."

You should come to my town Kim. You could choose from 2 HMO's, "Meancare or Groupdeath".

Heather:

Wow! The info you've shared is GREAT! I'm going to email the codes to everyone I know (and then it's off to the library to find a copy of that book!)!

Cherry,

Thank you for sharing your insight with us!

Your beautiful girl has unlimited potential. It is completely outrageous that they would deny her appropriate medical treatment. I suppose they don't care what the AAP has to say in their recommendations? You know the part about speech, occupational and behavioral therappies?

It's just wrong.

Everyone-We are very close to getting our autism insurance coverage passed. Nick's Law (named after our son), passed the Oklahoma Senate, however, there are two individuals in the House of Representatives that have single handedly kept Nick's Law from being heard. We have enough votes if we can get Nick's Law to the floor, but the Speaker (Chris Benge 405-557-7340) is doing everything he can to keep Nick's Law from making it to the floor. If we can get Nick's Law heard, the diagnosis and treatments for all autism related services (including speech and up to $75,000/year for ABA) will be covered.

If you would like to help, please call Speaker Benge's office and tell him how disgusted you are with the manner in which he is treating families with autism...or just say whatever you wish...he needs to know what a terrible thing he is doing...we are so very close. He also has a cohort who is chairman of the finance committee that wouldn't allow Nick's Law be attached to a House bill last week. Following are the numbers if you want to help:

Rep Ron Peterson (R):405-557-7338
Speaker Chris Benge (R):405-557-7340

Thanks so much everyone, Robyne, Mommy to Nicholas (Nick's Law-mandated insurance coverage for families in Oklahoma)

Granite - "The Late Talker" has 5 pages of information on Dxing and codes for doctors and SLP's. From what I can tell, either can Dx a child and submit it to the insurance, but the "higher ranking" a medical professional, the better chance your child stands of having therapy covered by insurance. At 2 1/2, my son did not have a Dx, we had insurance out of Texas. I took my son to a Pediatric Neurologist and he has Dx'ed with encephalopathy. Speech and OT were covered.

Here's a link to the book. It's mainly about aprxia

http://www.speech-express.com/latetalkerrelease.html

"Codes to USE: 784.69, 315.40, 718.3 apraxia codes. 784.5 dysarthria. 784.6 expressive language disorder w/ apraxia. 783.4 neurodevelopmental impairment. 742.9 static encephalopathy. 343.0 cerebral palsy. 314.0 ADD. 314.01 ADHD. 299.0 autism 299.8 PDD-NOS. 381.1 chronic serous otitis media. 388.4 central auditory processing disorder. 783.3 feeding disorder. 765.0 prematurity"

Heather O great information, thanks. Do you know if these are to be Rxed by a pediatrician or would an SLP be able to give some of these as well?

Gosh, that seriously sucks, over 4 years ago, my son was first misdiagnosed with apraxia (not ASD). Unfortunately, we lost over a year of critical development for biomedical treatments, but one of things I did right, was I bought a book called the “The Late Talker” by Marilyn C. Agin MD.

In the book, it lists diagnostic codes your pediatrician or therapist should submit so your insurance company will cover speech therapy.

This is what the books lists:

Codes to AVOID: 315.3, 315.31, 315.39, 315.9 code for developmental speech and language disorders

Codes to USE: 784.69, 315.40, 718.3 apraxia codes. 784.5 dysarthria. 784.6 expressive language disorder w/ apraxia. 783.4 neurodevelopmental impairment. 742.9 static encephalopathy. 343.0 cerebral palsy. 314.0 ADD. 314.01 ADHD. 299.0 autism 299.8 PDD-NOS. 381.1 chronic serous otitis media. 388.4 central auditory processing disorder. 783.3 feeding disorder. 765.0 prematurity

Obviously this advice is not solid since some states allow discrimination against ASD patients.

if autism were to become a covered medical condition the US health insurance system would colapse overnight of its own weight. forget about it! please don't misconstrue that statement as a disagreement that it SHOULD be covered. It can't be covered. give it up. you are correct, it should be. we are a bankrupt, debtor nation. we need to file for banckrutpcy. the rich need their wealth and must be allowed to keep it, period. sorry if i sound bitter. it is only because I am. when i was 18, shortly after i graduated high school my father suffered a heart atttack. eighteen days later he sufered his last. he was covered by my mother's insurance, UAW, she worked for Rochwell International, at the time. The bill we recieved was for $2.xx. I don't remember the exact amount. I thought that was nomal, boy was i wrong. The total bill was less than $4,000. At the time, 1969, a down payment on a home. Today, 18 days in a cardiac intnesive care ward would PAY FOR a home! Something terrible is happening, we need to drop the bull shit and find out what is going on, please!

What?! Who's to say when an autistic child will grasp the concept of language? My daughter was non verbal at 3 and now at 8, she tells jokes, describes science projects and castigates her brothers regularly! What a crock!

Cherry Misra,

Welcome! We're so glad to have you here; everyone needs to see and hear the truth about vaccines and autism, mercury and autism, and how it's spreading throughout the world with grossly unsafe vaccines and vaccine "schedules."

This is a great place to speak the truth and to fight for what's right. We will never shut up until everyone knows what's causing autism; we will never quit working for justice for those who have been carelessly and knowingly hurt.

Terri Lewis

First I must say to Kim and the rest of you dealing with this -- what an outrage! This is part of mainstream "experts" treating autism as some steady-state disorder that has some deep and mysterious cause and can't be fixed. None so blind...
Second, I wanted to say to Cherry that her comments on India are very significant. I did an interview earlier with two chiropractors you can find on this site who said very much the same thing at the "macro level" in India -- new shots around 2000, leading to the first cases of autism they observed. I think we can now add WHO to the CDC as possessors of guilty knowledge, or at least dereliction in failing to follow up and monitor closely the overall health outcomes as they vaccinate the rest of the world. And of course these shots DO have thimerosal. This is the nightmare David predicted at the end of Evidence of Harm but that folks like Roy Grinker pass off as cultural relativism or whatever ... it's so compelling that you're seeing 1 child in 10 or 15 with speech delay, one of the hallmarks of autism. and of course, 1 in 10 or 15 translates into 1 in 100 or 150. that sounds familiar!

Kim-
Bella is beautiful and it just makes me more angry when I see someone going through what we are going through. We had a hard time with Cigna covering Riley's OT visits. They would tell me that they couldn't discuss it but would say that the OT wasn't using the right CPT Code. Then they would tell the OT that they couldn't tell her which code to use. She still hasn't guessed the right code so we have our lawyer working on that while, in the meantime, I do OT with my son at home MY way. I just taught him to use a straw again, so I am wondering why I needed Cigna's choice of an OT. Ridiculous!!

Interesting.

My blog post today proves they are full of shit.

http://michelleoneilwrites.blogspot.com/2008/04/what-not-to-do.html

I live in India and I run a nursery school, and I would like to tell everyone that for about 22 years of running my school I never saw kids who did not speak well. I used to wonder what speech therapists did with their time. Then came the age of autism, which for us began after we got the big three vaccines, Hib, Hep B and Flu in about the year 2000. Well, you can imagine the rest, Now my school always has about one child in 10-15 who has delayed speech

Great interview, Kim. Wonderful, beautiful children. As you say, they all are.

It's truly disgraceful, the state of our system. Private insurace denies the service. Parents seek help from public systems like Medicaid (if they're eligible). Medicaid systems are reducing the number of speech services allowed within a year so the need gets pushed to another level - the public school system. In the end, kids are receiving speech and occupational therapies at the most inefficient level possible (and possibly the most expensive).

Great interview Kim. People-we have to hit them where it hurts. In the wallet and in the court of public opinion. We have to appeal everything they deny. Request assistance from your representatives. Appeals cost them money. Defending lawsuits costs them money. Write letters to the editor.
I live in a big insurance town. They are so uptight about negative PR they don't even want police officers seen in thier buildings as people may think a crime was commited in thier perfect world. Image is EVERYTHING to these companies.

You are right Kim. The health insurance industry is seriously trying to avoid having to cover Autism at all costs. I truly believe that it is up to the parent to do the research and find which CPT Codes work to get around speech therapy(This varies from state to state). I have heard from professional Speech Therapists that in some cases it is best to not have your child diagnosed with Autism because 90% of the time the insurance company will then not cover speech especially when you code it with the Autism Code. Again, I am not saying that speech can or cannot be covered. I am only stating what I was told. I know of many families that do not wish to disclose any of these codes for the case that the insurance companies become aware of such practices. The best thing for a parent to do is to network and become part of a group that way all insurance info can be shared.

I am disgusted by the lack of appropriate health care in our so-called "health care" system for our children with autism. The fact that Bella, or any other child with speech difficulties, is not eligible for speech therapy is a disgrace. I guess all the people who made these ridiculous restrictions for and within the health insurance companies were born perfect. I want to explode when I hear about this "window of opportunity" because clearly, those people have no clue what they are talking about and it only serves to make THEIR lives easier. Its a nice excuse for therapists to use to deflect their own incompetence. So, I guess we should all stop sending our neuro-typical and affected kids to school because clearly, they will not learn anything past the age of 5. Here's a news flash - I must have learned all I know about my profession - chemical enginnering - at the age of 5. Either I'm a child genius, or they're STUPID! Anyone who even thinks they have tapped the surface in understanding the complexity of the human brain has ALOT to learn.

My daughter didnt speak until she was 4.5 years old, and even then, it was a handful of singular words. Its a good thing her speech therapist didnt shut her services down a few months later on her 5th birthday. And miraculously, her speech gets better every week, and she's almost 8. But, I pay through the nose for these services. Both my husband and I pay for family insurance so that she can get enough therapy.

This is an attempt by the insurance companies to cover up the damage that has been done to our children by a system THEY endorse - vaccinations. And we can't let them get away with it.

Kim, I first want to thank you for all of your articles and the television interviews you have given. I live in New Jersey, and I have to say that once my children had their autism diagnoses, they were immediately given speech and OT by our school district. As they were over age three, they got help in a pre-school program initially. Through this website, and others I am finding out how difficult, or impossible, it is for many to get appropriate services for their autistic children all over our country. This is unacceptable. Early intervention is important for our children.

As autism has become so prevalent, in NJ and in all other states, it needs to be addressed by each and every school system in our country. Our kids do eventually reach school age. With the No Child Left Behind Act, no parent should have to struggle to find services for their child, at the pre-school age, or otherwise. I hope you are successful in getting the services you need for your beautiful little girl whether from your town school district or your health care provider. It is a disgrace that your health provider so readily dismisses your child's potential for recovery.

One other thing, though. Just because services are offered does not mean they are great, or even helpful. Just as you are limited by the backward thinking of your health insurer, professionals who assist our children are also sometimes limited in their beliefs. The first OT my son had told me and my husband at our first IEP meeting that my son would never learn to use a fork or spoon as "the window of opportunity has closed." I looked at her in disbelief. Thank goodness she had to move to another state (Florida mothers, beware). With the help of the new OT, guess what? My son learned to eat spaghetti (GFGC, of course) with a fork. He can also zip his pants and button the tiny buttons on his shirts. My point in sharing this is that the brain is plastic, and speech, motor skills, and for that matter anything else, can be learned at any time. One thing all of our kids have in common is brain damage, and their brains will recover at their individual paces, not by some guidelines in someone's manual. I wish you didn't have to fight for services, Kim. I pray for all of our children, every day.

They'll cover Viagra, abortions, etc. but not speech. I hear you-I have to choose which one of my kids I can afford to send to speech.

Kim, we had a similar problem. Our insurance company told us that if our son had been speaking and lost his speech due to an accident, they would cover it. I immediately informed them that our son was talking up a storm at the age of one, accidentally ran into a handful of vaccines, and lost all speech. I didn't get a response. Wonder why?

Our beautiful daughter was also denied OT, PT, and speech therapies (in 2006) due to chronicity of diagnoses.

It is a slap in the face considering her diagnoses are the result of vaccine injuries (from the early 1990's).

Thanks - I'll get coverage for her under Apraxia most likely with the new insurance. And Stigma is actually better than the others assuming you have a coverable diagnosis. No limits. The problem THEN becomes finding a qualified IN NETWORK provider. Seems to me that the therapists who know how to work with our kids are NEVER in network with insurance, so we're stuck with a lady from 1978 who's using techniques for stuttering and articulation - which are quite useless for our kids. Of course, going OUT of network means greatly diminished reimbursement and monster deductibles. Bella is READY for speech, thanks to the biomedical treatments we've been doing. You can see her lips forming sounds, her eyes are BEGGING to communicate. I'm behind this new autism insurance legisltation whether it covers biomed or not - any dollar freed up for me to pay for therapy means dollars in my pocket for more biomed.

Thanks, friends. And yes, Bella is as beautiful as her name. She is. As are ALL our kids.

Kim

Kim, your daughters are beautiful. I'm so mad for you right now ... first the healtchare system tips our kids over the autism cliff, then they say they won't pay to help them. WTF? I'm so steaming mad right now. Who the hell are they to say any child can't benefit from a therapy? It's like saying "Kim, your beautiful sweet girl is hopeless." How wrong is that ... your daughter is not hopeless Kim, give them hell!!!!!!!!!!!!!!!!!!!!!!!

Bella is beautiful!! These insurance companies should be ashamed. They are a disgrace and they've been getting away with this type of thing for way too long.

Kim-
Research Wheeler vs Aetna GA and fight this thing!
They won asking why "if my kid had a stroke would he get speech therapy" but with Autism "no.". They won both the case and the appeal.
Crazy, Insane, Stupid! to not invest in early intervention.

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