Change.org petition for CI coverage

[naisho]

It would make a lot more sense to the blindness vs deafness child if there was some kind of eye surgery to restore from total blindness to infants, but this isn't possible yet. Bionic eye is gonna take wayyy much longer than our current time. Taking medication to prevent from going blind is a different argument, since they already have that sense and don't want to lose it.

The point of implanting CI to babies is to place an artificial substitution that allows them to enter the hearing world (whether or not that it actually works is a different argument). There is no current medical technology (eg. "Bionic Eye") that can restore total blindness. If there was, I bet some members of the blind community would try it and others would be against it - the same divide that CIs have with deaf community.

 

[ambrosia]

Basically, the point I'm saying is that you lose more if you go blind than if you went deaf. Which is not related to the argument you are trying to make (people who want to retain that sense for their child or themselves but get bashed for it), but as a result of going blind or going deaf, you can easily observe that "it's not too bad" being deaf... Why? because it's different than being able to see due to those list of things that were irrelevant to the argument you were trying to make.

I take it that this is reference (of being against hearing) to the "what bothers you about hearing people" thread?
I haven't seen anyone take pride in their deafness other than Deaf Power/Militants, and I don't see many of the purists/deafists on AD these days. A lot of ADers (and I'm inferring this as the deafened-asl-only) have sympathy for the late deaf because they miss out on what they were used to (hearing). What's different is when it comes to a child who has only has several years or less on their "life progress" belt.

The hoh/deaf kid is not going to miss out much from being deaf and pursuing that life than they are going to CI and pursuing that life. It's a matter of personal decision but unfortunately the family tends to make that for them since it's hard to tell which direction they want to go at a young age.

I think you got part of what I said backwards in one of my posts. I didn't mean deaf feel superior, but that deaf, well some deaf, feel that hearies feel they are superior because they can hear. That hearing is superior to deaf. I don't think many hearing, I'm sure there's some because there's plenty of horrible people in the world, hold personal judgements against deaf people, for the sole sake of being of deaf. That's what I meant when I said it wasn't a judgement. Have I had people treat me like I'm stupid? Yes, but they thought I was a stupid hearing person, they didn't know at the time I was deaf.

But no, not any one particular thread, I just used that one as an example. I just feel that a lot of deaf people honestly don't understand hearing ones, and make a lot of assumptions that are based in lifelong insecurities. Those attitudes and feelings are sprinkled all through the forum. Which is understandable. Just wondered if looking at it in a different way would bring another perspective.

 

[ambrosia]

ohhh, but the cultural has so much to do with it, and the fact that one doesn't see it, makes it all so much more obvious.

and, as with a lot of the prejudices in today's times - the most insidious and persistent oppression/negativity is no longer directly stated.

It was an analogy, not an exact comparison. You're overcomplicating the analogy and bogging it down with unecessary details. It's just a surface hmmmmmmm I wonder if hearing people not liking the idea of us not being to hear is kind of like I wouldn't like the idea of someone not being able to see. If I wanted them to see, would that mean I thought they were broken and need to be fixed? Would I think they weren't as good people who could see? And obviously this is hypothetical not literal.

 

[Grummer]

even a late deafened can be embittered from their childhood...,
not all Deaf as a child was embittered, it could be when they left school later in life and find out nothing in the hearing world is not what seems, or what they were lead to believe, ie. finding out that it is totally different from what they were taught (and taught to trust the hearing teachers, parents, etc) the reality slams hard...then every thing changes...

it would be likely MOST deaf as adult have had a fairly happy childhood, just some of the lurking 'what i am missing; wasn developed because it was denied, largely because they were UNWITTINGLY encouraged to deny their curiousity of the real, reality (of being deaf)...

 

[ambrosia]

even a late deafened can be embittered from their childhood...,
not all Deaf as a child was embittered, it could be when they left school later in life and find out nothing in the hearing world is not what seems, or what they were lead to believe, ie. finding out that it is totally different from what they were taught (and taught to trust the hearing teachers, parents, etc) the reality slams hard...then every thing changes...

it would be likely MOST deaf as adult have had a fairly happy childhood, just some of the lurking 'what i am missing; wasn developed because it was denied, largely because they were UNWITTINGLY encouraged to deny their curiousity of the real, reality (of being deaf)...

Yes, obviously everybody can development bitterness, not just the deaf, not quite sure why you're needing to point that out. I don't even know why anyone would think I mean everybody, obviously there are a myraid of different people on here, with a myraid of different experiences and view points. It's just a theme I see throughout the forum, but that does not mean that it applies to everyone.

 

[Jiro]

I think the parents should focus on his health first rather than his hearing.

 

[deafdyke]

No, it is not easy to do. It wasn't for me but that person who commented on that website really made it sound like being deaf is like being doomed to a life of not being independent and of misery forever. That is how society views deafness no matter how much the Deaf community tried to educate society that it doesn't have to be that way. People are so stuck in the "hearing" box that they don't look outside of it and give it a try.

Just my 2 cents of the impression I get from society and some people here on aD.

Exactly. If you've never had it, you don't miss it in the first place. I love it how they imply you can't be indepedent without hearing. I know tons of oral deaf kids who refuse to go out in public without a Hearing Ear Person (someone with perfect hearing who can orally interpret for them) Heck, I know hearing people who are not independent.

 

[deafdyke]

What are you expecting? As one of the people with both deafness and low vision, it's just something you adapt to if needed.

I started out sighted, but my eye disease certainly hasn't meant the end of my world, just adapting.

This. This exactly. Granted sight for those of us who are dhh is extremely important, but even when it does happen, you adapt to and live with it.
Physical issues are ones that you can adapt to and live with. I can't imagine being blind, but again that doesn't mean that those who are born/early blinded (and just blind/low vision not multiple disabilties) don't adapt to and live with it.
They've never known what its like to see...........

 

[deafdyke]

I think you got part of what I said backwards in one of my posts. I didn't mean deaf feel superior, but that deaf, well some deaf, feel that hearies feel they are superior because they can hear. That hearing is superior to deaf. I don't think many hearing, I'm sure there's some because there's plenty of horrible people in the world, hold personal judgements

You mean you've never encountered the " oh poor deaf people....they're so helpless....Oh it must be so horrible not to be able to hear" attitude?
That is hard to believe. They do believe that hearing is superior to dhh......otherwise they wouldn't be constantly trying to fix us!

 

[HOH-ME]

Why do deaf children continue to be placed in oral only programs or be mainstreamed and then end up falling behind because they did t have full access to language and information? The view is behind this problem.

Because parents push to have their kids mainstreamed....sit in on an IEP or 504 meeting sometime....

Yes, I had bad experience with CI surgery.

My parent originally want me to have CI in early 90's but insurance company denied because I wasn't candidate and in greater risk for complication. It took several years for my parent to got insurance approved on CI because I wasn't doing well in speech therapy. My parent told me that CI will cure my deafness and promised me that I will have perfect life - told me that I may get a nice mansion on coast because of successful career due to CI. After CI surgery, I spent one night at hospital due to blood loss and too sick to be discharged. The doctor recommended me to stay at hospital for few days but my parent decided to took me home early with a lot of pain and bleed in my head. At night after discharge at same day, the blood started soak the band around head and I started had dizzy so started feel very sick with worst pain ever, so my parent took me to ER and had stayed at hospital. That was NOT FUN at all.

My parent's fantastic imagine went faded away and I'm still struggling with my life, even stuck on government welfare and deal with medical condition. I used to work at Walmart and pay was at minimum wage - what's most amazing - NOT!

I seriously doubt any credible medical professional said that to you and/or your parents. If they did that should have been your parents clue to get a second opinion.

CI's "cure" hearing like glasses "cure" vision problems. Yes, they can correct them to a point but if you take them off, your hearing goes away or your vision is impaired still...

 

[Frisky Feline]

Because parents push to have their kids mainstreamed....sit in on an IEP or 504 meeting sometime....



I seriously doubt any credible medical professional said that to you and/or your parents. If they did that should have been your parents clue to get a second opinion.

CI's "cure" hearing like glasses "cure" vision problems. Yes, they can correct them to a point but if you take them off, your hearing goes away or your vision is impaired still...

guess you have better commons than others.

 

[deafdyke]

Again, it wasn't a question of which is worse, I wasn't asking that, at all. Just the concept of missing a sense is not a personal judgement against someone. There are serious misconceptions about WHY hearing people feel the way they do. If someone were to think about how they would feel to lose their sight it might put into perspective why hearies feel the way they do. But that might be asking some to think too far outside their box I think.

Ambrosia, you're still approaching it from an impairment perspective.
Would I want to lose my sight? No. But if I was born/early blind/low vision I wouldn't think anything of it.

 

[KarissaMann05]

I think the parents should focus on his health first rather than his hearing.

And I think they should wait until a child is 1 year old and his/her health is great before they can go ahead with CI surgery...

 

[DeafAlex]

Ugh...It's not up to us to decide whether this baby should have a CI or not. His parents and Dr's know his medical state. In order to qualify for a CI, he had to have tried HA's and shown they didn't give enough benefit. He is not our child. By signing the petition, I am not advocating babies being given CI's. I am advocating that all people deserve coverage for a CI if they want one.

 

[Jane B.]

Ugh...It's not up to us to decide whether this baby should have a CI or not. His parents and Dr's know his medical state. In order to qualify for a CI, he had to have tried HA's and shown they didn't give enough benefit. He is not our child. By signing the petition, I am not advocating babies being given CI's. I am advocating that all people deserve coverage for a CI if they want one.

This is the impression I got. That their experience led them to become an advocate for it to be a standard part of insurance policies.

 

[cjg]

Well . this is pretty much bullshit ..

First off , united healthcare DOES cover implants. I know this for a fact , as they paid for one of mine

Secondly .. FDA guidelines are 1 year. Implanting younger then that requires a waver from the FDA and is considered experimental. This is the most likely reason for denial.

This isn't some general denial. There are specific reasons , and we on the outside are not qualified to comment on it.

Now that being said , personally , I think the kids parents should be more worried about keeping the boy alive .. To be brutal here for a moment. IF the boy makes it to his first birthday , then of course UH will cover the implant. But younger then 1 year is NOT generally recognized as a viable treatment option.

 

[HOH-ME]

Well . this is pretty much bullshit ..

First off , united healthcare DOES cover implants. I know this for a fact , as they paid for one of mine

Secondly .. FDA guidelines are 1 year. Implanting younger then that requires a waver from the FDA and is considered experimental. This is the most likely reason for denial.

This isn't some general denial. There are specific reasons , and we on the outside are not qualified to comment on it.

Now that being said , personally , I think the kids parents should be more worried about keeping the boy alive .. To be brutal here for a moment. IF the boy makes it to his first birthday , then of course UH will cover the implant. But younger then 1 year is NOT generally recognized as a viable treatment option.

YOUR United Healthcare plan covers CI's. Every plan is different. Some companies may choose to exclude CI's and then those plans don't cover CI's, even though they are administered through United Healthcare. Every plan sold to a company is different.

 

[diehardbiker]

Long list? I would bet my ass 99% of them are just downright MYTH! If they do, this proves purely oppression.

I predict more and more will be on the net proving Deaf CAN do almost anything.

https://www.youtube.com/watch?v=IysLbpVcuhU
https://www.youtube.com/watch?v=8_8QdX4qCJ4
https://www.youtube.com/watch?v=F5W604uSkrk

Here's the thing...my point.....a hearing person could come up with just as long of a list of things a deaf person couldn't do or experience, and yet you all can't understand how hearing people put so much value on hearing.

 

[ambrosia]

Long list? I would bet my ass 99% of them are just downright MYTH! If they do, this proves purely oppression.

I predict more and more will be on the net proving Deaf CAN do almost anything.

https://www.youtube.com/watch?v=IysLbpVcuhU
https://www.youtube.com/watch?v=8_8QdX4qCJ4
https://www.youtube.com/watch?v=F5W604uSkrk

Did I say the list would be accurate? No, I did not.

I've moved on from this because people are having a hard a time seeing what I'm saying, they're picking and choosing and interpreting. They won't look at it from any other view than their own SOOOO I've dropped it.

 

[Foxrac]

I seriously doubt any credible medical professional said that to you and/or your parents. If they did that should have been your parents clue to get a second opinion.

CI's "cure" hearing like glasses "cure" vision problems. Yes, they can correct them to a point but if you take them off, your hearing goes away or your vision is impaired still...

You don't know about ALL medical professionals over country and many patients have many, many different experience.

No surprise about you denied my and my parent's experience with ENT doctor.