Change.org petition for CI coverage

By in a signing world, I feel I don't have a "medical" condition.
 
Here's a question. How do they know that a hearing aid won't work?
Whatever happened to all the kids with severe-profound or even profound losses who benifited from HAs back in the day? There were so many that Clarke/CID/St Joseph's had an active boarding program and had both Upper and Lower Schools... Even today there are still a lot of audilogically deaf kids who still benifit from traditional aids.
There are cases where the baby/toddler does not benifit at ALL from hearing aids...I'm ALL for CI then. Nothing wrong with implantation if it is clear and obvious that there's NO benift from aids. I wonder if CI would be so popular in the US, if hearing aids were covered. I see parents and experts pushing the CI as the best of the best option........I think I'd be a little more open to CIs if the implantation crieria was a bit more strict for children.
 
And just to mention....being strict about who can/can't get a CI, along with HA coverage would mean that there'd be lower insurance costs. The CI costs a HELL of a lot!
Like I do think that there are people who are trying to claim that "oh I have a hard time hearing in noise with aids , or my SRT is 10% without aids (not mentioning that SRT with aids is something like 60% etc) and they're opting for CIs, which in turn is driving up the insurance cost. Heck I remember reading that the coachlar companies released an upgrade that basicly consisted of a slimmer processor?!?!?!?
 
Two things-
For late deafened people ASL is very real and beneficial means of communication BUT simply learning ASL does not establish a way to communicate with hearing friends and family. The thing is that the hearing loved ones have to put in effort to communicate with us and we have to put in effort to communicate with them.
Sure, I could go ASL only but I would loose everybody in my family except my fiancé who will be my husband in 9 days.

And to deafdyke's point, hearing aids "work" for me in the same way positive thinking cures cancer.
My hearing aids are useful in quiet, one-on-one situations and that is it. Yeah, when I'm wearing my super power BTEs I can hear alarms and sirens but in my day to day life, when I'm not in class or working, I don't wear them.
They have to be so loud that they actually cause more hearing loss.
That is ridiculous. Just to be able to hear sounds I have to have a gain of 100dB. That makes my ears roar for HOURS.
 
ecp said:
Two things-
For late deafened people ASL is very real and beneficial means of communication BUT simply learning ASL does not establish a way to communicate with hearing friends and family. The thing is that the hearing loved ones have to put in effort to communicate with us and we have to put in effort to communicate with them.
Sure, I could go ASL only but I would loose everybody in my family except my fiancé who will be my husband in 9 days.

And to deafdyke's point, hearing aids "work" for me in the same way positive thinking cures cancer.
My hearing aids are useful in quiet, one-on-one situations and that is it. Yeah, when I'm wearing my super power BTEs I can hear alarms and sirens but in my day to day life, when I'm not in class or working, I don't wear them.
They have to be so loud that they actually cause more hearing loss.
That is ridiculous. Just to be able to hear sounds I have to have a gain of 100dB. That makes my ears roar for HOURS.
Click to expand...

What hearing aids have a gain of 100db? My Audi has always said one day they may make stronger hearing aids which is what I need. My Naida UPs only go up to 86db gain max.
 
deafdyke said:
And just to mention....being strict about who can/can't get a CI, along with HA coverage would mean that there'd be lower insurance costs. The CI costs a HELL of a lot!
Like I do think that there are people who are trying to claim that "oh I have a hard time hearing in noise with aids , or my SRT is 10% without aids (not mentioning that SRT with aids is something like 60% etc) and they're opting for CIs, which in turn is driving up the insurance cost. Heck I remember reading that the coachlar companies released an upgrade that basicly consisted of a slimmer processor?!?!?!?
Click to expand...

Really now? You think that just because you've seen a few people online inquiring about CI's after complaining of the above issues that they just went out and got one on demand?

The requirements for a CI ARE strict. Centers are not just handing them out to anybody who wants one.

Everyday I hear from people who are desperate to get a CI and fail to meet the criteria after being evaluated.. being told they need to lose a little more hearing or they did just a little too well at GUESSING in speech testing. Go find them and tell them how easy it is to get a CI since they are obviously just handing them out willy nilly in your world.

As for the slimmer processor... that would be the AB Naida CI. Many users ears are aching for a thinner processor that they can wear comfortably. As one who is starting to wear glasses more and more often as I get older, I definitely need that. Then there is the fact the processor brings wireless connectivity, communications with a second processor or hearing aid on the other ear, 2 additional mics than there already is with the ability to focus in noise (which actually does work,) and a thinner T-mic. It also can have up to 5 different programs. There is more... but what it comes down to is if an existing user wants one, that is their business. New users will have different options to consider.

Apparently in Deafdyke-land, times stands still and everyone uses the same everything they started with for the rest of their lives.
 
BleedingPurist said:
Really now? You think that just because you've seen a few people online inquiring about CI's after complaining of the above issues that they just went out and got one on demand?

The requirements for a CI ARE strict. Centers are not just handing them out to anybody who wants one.

Everyday I hear from people who are desperate to get a CI and fail to meet the criteria after being evaluated.. being told they need to lose a little more hearing or they did just a little too well at GUESSING in speech testing. Go find them and tell them how easy it is to get a CI since they are obviously just handing them out willy nilly in your world.

As for the slimmer processor... that would be the AB Naida CI. Many users ears are aching for a thinner processor that they can wear comfortably. As one who is starting to wear glasses more and more often as I get older, I definitely need that. Then there is the fact the processor brings wireless connectivity, communications with a second processor or hearing aid on the other ear, 2 additional mics than there already is with the ability to focus in noise (which actually does work,) and a thinner T-mic. It also can have up to 5 different programs. There is more... but what it comes down to is if an existing user wants one, that is their business. New users will have different options to consider.

Apparently in Deafdyke-land, times stands still and everyone uses the same everything they started with for the rest of their lives.
Click to expand...

Apparently the CI requirement have been made easier from what I read on line but I do agree that there are many people out there that need and want them but can't.
 
The Naida CI is a LONG, LONG way from just a slimmer processor. It's a complete rework of the internal software. It's comparable to the jump from analog to digital hearing aids.

CI surgery absolutely should be covered. No ifs, ands or buts.
 
NaidaUP said:
Apparently the CI requirement have been made easier from what I read on line but I do agree that there are many people out there that need and want them but can't.
Click to expand...

You no longer have to have absolutely nothing at all in the ear to be implanted, but that is because they've since realized the greater benefits of implants over the years. The requirements have been adjusted as appropriate along with improvements in surgical prodedure and technology.
 
I'm not sure why people would continue to advocate CI surgery for an infant in a very fragile state. Couldn't it seem reasonable to wait some time until the baby's health has fully recovered?
The parents are making the decision but we have no idea how the baby is feeling about it (or will feel about it).

At only 4 months of age, Nixon has battled with Jaundice, thrombocytopenia (low platelet counts), gastric tube surgery, and open heart surgery.
Click to expand...
He was an induced labor because he wasn't recovering well from contractions with severe IUGR. When he arrived he was perfect, but small. He was immediately taken away to the NICU due to his size, but started his days out promising.
Click to expand...
As time went on in the NICU, Nixon's health declined and was transferred to a specialty hospital for all his needs.
Click to expand...
So far Nixon has dealt with Jaundice, Thrombocytopenia (low platelets), Open Heart Surgery, Severe to Profound Hearing Loss, Eating issues/weight gain, Gastric Tube Surgery, GERD Grade 1 IVH with possible structural/neurological findings soon to be followed up by MRI, Hernia Surgery in the near future.
Click to expand...
 
ecp said:
Two things-
For late deafened people ASL is very real and beneficial means of communication BUT simply learning ASL does not establish a way to communicate with hearing friends and family. The thing is that the hearing loved ones have to put in effort to communicate with us and we have to put in effort to communicate with them.
Sure, I could go ASL only but I would loose everybody in my family except my fiancé who will be my husband in 9 days.

And to deafdyke's point, hearing aids "work" for me in the same way positive thinking cures cancer.
My hearing aids are useful in quiet, one-on-one situations and that is it. Yeah, when I'm wearing my super power BTEs I can hear alarms and sirens but in my day to day life, when I'm not in class or working, I don't wear them.
They have to be so loud that they actually cause more hearing loss.
That is ridiculous. Just to be able to hear sounds I have to have a gain of 100dB. That makes my ears roar for HOURS.
Click to expand...

ecp, bear in mind you have recruitment, and would most likely benifit siginifcently from CI .I actually wonder if you're bordering between deep profound and profound b/c of the recruitment......But the thing is there were and ARE a significent population of functionally HOH with hearing aids kids....What ever happened to those kids? I mean those kids did well enough to learn to speak, and learn orally......Just saying
 
BleedingPurist said:
Really now? You think that just because you've seen a few people online inquiring about CI's after complaining of the above issues that they just went out and got one on demand?

The requirements for a CI ARE strict. Centers are not just handing them out to anybody who wants one.

Everyday I hear from people who are desperate to get a CI and fail to meet the criteria after being evaluated.. being told they need to lose a little more hearing or they did just a little too well at GUESSING in speech testing. Go find them and tell them how easy it is to get a CI since they are obviously just handing them out willy nilly in your world.

As for the slimmer processor... that would be the AB Naida CI. Many users ears are aching for a thinner processor that they can wear comfortably. As one who is starting to wear glasses more and more often as I get older, I definitely need that. Then there is the fact the processor brings wireless connectivity, communications with a second processor or hearing aid on the other ear, 2 additional mics than there already is with the ability to focus in noise (which actually does work,) and a thinner T-mic. It also can have up to 5 different programs. There is more... but what it comes down to is if an existing user wants one, that is their business. New users will have different options to consider.

Apparently in Deafdyke-land, times stands still and everyone uses the same everything they started with for the rest of their lives.
Click to expand...

Actually yes it does happen. I know of cases where people used the poor speech perception from ITE aids to get implanted, I know of a case where the kids heard 60% with hearing aids, but the mother got them implanted b/c they had low speech perception without aids?!?!?!?
Why are you constantly attacking me like I'm one of those completely anti CI folks???!?!??! So I don't totally unequalivably support CI.....Let's just say that while I DO think that it can be an AMAZING thing, especially for people who have totally maxed out on aids, recruitment, auditory nereopathy, progressive losses etc, I'm also extremely skeptical as to the claims......they sound like salesmen claims. They also sound exactly like the claims that the HA companies made back in the day about HAs for audilogically deaf people.
We get you love yours. But it seems like there's been a HUGE HUGE variabilty of benifit from CI. There are even implantees who actually HAVE to use 'terps?!?!?!?!? Stating that is not attacking you.
 
deafdyke said:
Actually yes it does happen. I know of cases where people used the poor speech perception from ITE aids to get implanted, I know of a case where the kids heard 60% with hearing aids, but the mother got them implanted b/c they had low speech perception without aids?!?!?!?
Why are you constantly attacking me like I'm one of those completely anti CI folks???!?!??! So I don't totally unequalivably support CI.....Let's just say that while I DO think that it can be an AMAZING thing, especially for people who have totally maxed out on aids, recruitment, auditory nereopathy, progressive losses etc, I'm also extremely skeptical as to the claims......they sound like salesmen claims. They also sound exactly like the claims that the HA companies made back in the day about HAs for audilogically deaf people.
We get you love yours. But it seems like there's been a HUGE HUGE variabilty of benifit from CI. There are even implantees who actually HAVE to use 'terps?!?!?!?!? Stating that is not attacking you.
Click to expand...

You do post a lot of comments which are negative to CIs. I'm not attacking you, just stating a fact here. It means people recognize you and go out of their way to argue with you.

Anyway, the huge variability is because of a number of factors, some of which recipients have no control over. Physically, the implant must be located properly in the cochlea. That's dependent on the skill of the surgeon. Mentally, the user has to be a participant in CI programming -- if he/she doesn't actively engage the audiologist or the audiologist is unskilled, the CI maps are going to be terrible which will result in a poor CI outcome.

Another thing is many people don't bother learning anything about their CIs and treat them like black boxes that they have to take to a specialist for tuning. I'm a settings monger and I know all of the implant programming options available to me and what they do. This is a big reason why I get great results from my implant!
 
naisho said:
I'm not sure why people would continue to advocate CI surgery for an infant in a very fragile state. Couldn't it seem reasonable to wait some time until the baby's health has fully recovered?
The parents are making the decision but we have no idea how the baby is feeling about it (or will feel about it).
Click to expand...

The issue has nothing to do with this individual baby. CIs should be covered. This baby is definitely fragile and should wait until there are no pending health issues before anyone even considers implantation. No surgeon is going to operate on an infant with health problems, anyway.
 
hazridi said:
The issue has nothing to do with this individual baby. CIs should be covered. This baby is definitely fragile and should wait until there are no pending health issues before anyone even considers implantation. No surgeon is going to operate on an infant with health problems, anyway.
Click to expand...

Are you sure..? When I read the website in the first post of this thread, it said it was a petition to let this baby (Nixon) hear. How is that not related to this individual baby?
 
ambrosia said:
That person is talking about their own feelings about becoming deaf, not society's view of deafness.

With a sudden loss like those feeling are genuine, real and common. You've been deaf all your life, you have a deaf network built already. For someone late deafened they are going to feel very very very differently about their deafness. They don't have that lifelong network built, their entire life is built with other people that can hear, Just learning ASL is not a cure all for them. The other people in their lives, all the friends family and coworkers do not know ASL that is not going to help them reconnect. 99.9% of the people they come in contact after they supposedly learn ASL are not going to know ASL and it's not going to help them communicate. The only people they would use it with is a eensy weensy teensy percentage of the population. Will it help? Yes, will it make all their problems go away? No.

FYI ASL is not a magic bandaid.
Click to expand...

well well, its Shel90's opinion, and she CAN say it is society's view of deafness.

There ARE such thing as social impact, as much as you might find hearing society may find you abit different that's because they are conditioned to 'see a hearing person's behaviour' and they dont get it from you, so they -hearing people DO see you as different, as a deaf person. I have seen a number of times that you shared stories of how you dont like hearinf people assuming certain things about you...it is exactly the same of reaction hearing people have about CI...try askingo a stranger hearig person or people (plural if you dare) what they know (or think they know) about deaf people or Deaf people, you'd be suprised, that much of it comes from popular views...and you'd soon suspect its from the media, and you're right...its from the media, and what do the media 'represent'? == of course its gong to be 'society's view'

this sort of variation that we have amongst ourselves as the deaf community makes it very awkward, and even it become a ground of contestation.....however overall...society DO sees 'all deaf people CI, signing. HA-oral, latened, sudden at teens gone deafs...converted from oral to sign (and other way around?)...all get under that one 'view' that a ONE hearing person is going to hold a view of 'deafness' and that will vary too...BUT overall..Hearing society DO consider deaf as somewhat inferior, ..that bit isnt going to change much, unless deaf people become more active in changing society view of it..how? influence and media and new knowledge..and awareness...

to recap a tiny bit...you any strange hearing people, you'd see the awareness of deafness is rather outdated and mean...so there . AND you'd see they might even say 'oh that space age hearing aid, the one with an operation i heard it can make you hear again, technology is incredible these days, look at this mobile phone i have...it does everything except making me a coffee"

that is soceity's view
 
shel90 said:
I too lost my hearing - suddenly and no known cause available. All at once, I was deaf. I believe it is nothing short of a crime for insurance companies to deny any child (or adult) this necessary device and surgery. Without the Cochlear Implant, the patient is left to feel isolated, alone, depressed, invisible, forgotten, and unknown. This world is a hearing world - not a silent world. Each aspect of life involves communication. Imagine not being able to make a simple telephone call, order a coffee, order fast food, check out at the grocery store, go to the bank, make a doctor's appointment, converse with your child(ren), call 9-1-1. All of these things happened to me--all at once

Just wow...

It sucks that society continues to have this view on deafness when it doesn't have to be that way.

Simple solution...learn ASL.
Click to expand...

Simple how? I know of no one that uses ASL...kind of hard to use ASL over the phone or with people that don't sign.....

I've had perfect hearing and now I am very HOH-I'll take living in a hearing world any day.

CI's are covered under most insurance plans, HA's are not (but that's getting better). Medications to treat eye conditions are usually covered....heck VIAGRA is covered but HA's are not....????
 
HOH-ME said:
Simple how? I know of no one that uses ASL...kind of hard to use ASL over the phone or with people that don't sign.....

I've had perfect hearing and now I am very HOH-I'll take living in a hearing world any day.

CI's are covered under most insurance plans, HA's are not (but that's getting better). Medications to treat eye conditions are usually covered....heck VIAGRA is covered but HA's are not....????
Click to expand...

Can use Video Relay. When I learned ASL, I didn't know anyone. I took the classes as a foreign requirement for my BA degree. Once I started learning, I started finding others who were fluent in ASL even hearing people! All a person has to do is take that first step....instead of saying "I don't know anyone who uses it"..just give it a try and who knows..u could meet a whole community of ASL users, deaf and hearing both. I was amazed by how many people I have met in the Deaf community since 1995. Before that, I only knew a few because of my brother and I never saw anyone using ASL out there.
 
HOH-ME said:
Simple how? I know of no one that uses ASL...kind of hard to use ASL over the phone or with people that don't sign.....

I've had perfect hearing and now I am very HOH-I'll take living in a hearing world any day.

CI's are covered under most insurance plans, HA's are not (but that's getting better). Medications to treat eye conditions are usually covered....heck VIAGRA is covered but HA's are not....????
Click to expand...

i find this bit , really interesting...no i wont say why...id just leave it at that.
 
shel90 said:
Can use Video Relay. When I learned ASL, I didn't know anyone. I took the classes as a foreign requirement for my BA degree. Once I started learning, I started finding others who were fluent in ASL even hearing people! All a person has to do is take that first step....instead of saying "I don't know anyone who uses it"..just give it a try and who knows..u could meet a whole community of ASL users, deaf and hearing both. I was amazed by how many people I have met in the Deaf community since 1995. Before that, I only knew a few because of my brother and I never saw anyone using ASL out there.
Click to expand...

You had different results than I did from taking a class!

There are a few differences including date and location.

I took beginning sign at my local community college as an evening class twice in the mid 1980s. Neither time did I make any contacts to continue actually using it.

I get the impression that even when you took the courses you were in an urban area. I was, and still am, in a small community in Southern Illinois. It has been years since I am seen anyone signing when out shopping or such. Seeing it used has always been rare to non-existent.
 
Back
Top