Some Ethical Dimensions of Cochlear Implantation for Deaf Children and Their Families

[R2D2]

True...there is a team of CI consultants visiting our school soon so we will get a learning experience from them. I am looking forward to it. Maybe I can learn some more and hopefully they can learn from us. From my understanding these are some serious names in the CI community so it is a postive thing for them to come and hopefully we can help and learn from each other.

That's cool! Maybe it will lead to a stronger working relationship in which parents are given more information and become more aware of the social aspect of deafness.

 

[jillio]

I agree..

I read an article posted here on AD last year about a boy who got a CI and relied heavily on it. Someone broke into their home and stole his processor thinking it was something else. For like a month or so, the boy couldnt hear anything therefore he was unable to communicate at all. There was a problem with getting replacements..cant remember what. He had to stay home from school due to not being able to communicate nor be able to understand the lessons and he didnt know any ASL so a terp would be out of the question. According to the parents, the boy became emotionally traumatic from the experience and withdrew into himself. It is nice to have the "freedom" but at the same time, it would be nice to have ASL too.
I would never forget that article cuz it really was sad.

I remmy that article, shel...it was unbelievably sad and illustrated the need for a fulltoolbox of language skills so well.

 

[Tousi]

True...there is a team of CI consultants visiting our school soon so we will get a learning experience from them. I am looking forward to it. Maybe I can learn some more and hopefully they can learn from us. From my understanding these are some serious names in the CI community so it is a postive thing for them to come and hopefully we can help and learn from each other.

This activity is a perfect example of a potentially better world IF, right after (or before) the CI guys give their speil, that the ASL community would come in and present their own perspective along with a number of other groups who normally do this in places such as hospitals, etc. The Deaf/ASL perspective needs to be squeezed in there somehow....why has that been so hard to date? U guessed it! Politics! Sad, huh?

 

[Buffalo]

That would be great. What would be helpful is if the Deaf community organized and advocated for this or put together a grass roots effort that sought out parents going through the screening process and at minimum mailed them information.

Exactly how do the Deaf community find out who has deaf baby?? Not from the doctors because of privilege information.

 

[R2D2]

Exactly how do the Deaf community find out who has deaf baby?? Not from the doctors because of privilege information.

They could contact hospitals, audiologists, CI centres and doctors and request working relationship type of meetings with the goal of providing parents with information about the social and cultural aspects of deafness through those channels and offering opportunities of signing lessons for example. Not all professionals are hostile to early sign, in my town one CI centre is happy to work with a signing approach whereas the other one isn't. I think that if it can be seen that a relationship can work well then perhaps others will follow?

 

[Audiofuzzy]

why has that been so hard to date? U guessed it! Politics! Sad, huh?

Well I for one don't think it's politics. I remember my own and brother's circumstances - our parents raised us according to the advice of medical and other professionals, and they in turn gave their advice depending on what was actual trend in the field. With my brother it was advisable to go with the deaf schools, with me- go mainstream.
Altough I must add these were NOT the only reasons we were raised the way we were, but it did had a big impact on our parent's decisison as what to do with us.

Another thing that is almost always overlooked among deaf - hearing people who don't have a hearing impaired person in their own family, have no clue about deaf and deafness. The same way a deaf (and any) person may not know about living with trichotillomania, and what to do with it. If one meet such a person one would be puzzled, even repulsed. Just because never ever met trichotillomania sufferer before.

Most professionals are like that - they have no in depth understanding of deaf culture and how succesful it can be at all because they don't have any liaisons with the deaf world. They are hearing, they live in hearing world and even if some do know 'something' about deaf community they still feel the best option is to hear - because they don't know anything else.
That could be the reason too, that whenever a professional is confronted with deaf child, not knowing any other enviroment than hearing he is naturally inclined to try his best at helping this child to survive in hearing enviroment.

But I think the awareness about other options - ASL, deaf culture - is growing and it is very likely that in the years to come the professionals will not only advise implantation but also participating in the deaf communities at the same time as the best option for a deaf child.

Fuzzy

 

[shel90]

Well I for one don't think it's politics. I remember my own and brother's circumstances - our parents raised us according to the advice of medical and other professionals, and they in turn gave their advice depending on what was actual trend in the field. With my brother it was advisable to go with the deaf schools, with me- go mainstream.
Altough I must add these were NOT the only reasons we were raised the way we were, but it did had a big impact on our parent's decisison as what to do with us.

Another thing that is almost always overlooked among deaf - hearing people who don't have a hearing impaired person in their own family, have no clue about deaf and deafness. The same way a deaf (and any) person may not know about living with trichotillomania, and what to do with it. If one meet such a person one would be puzzled, even repulsed. Just because never ever met trichotillomania sufferer before.

Most professionals are like that - they have no in depth understanding of deaf culture and how succesful it can be at all because they don't have any liaisons with the deaf world. They are hearing, they live in hearing world and even if some do know 'something' about deaf community they still feel the best option is to hear - because they don't know anything else.
That could be the reason too, that whenever a professional is confronted with deaf child, not knowing any other enviroment than hearing he is naturally inclined to try his best at helping this child to survive in hearing enviroment.

But I think the awareness about other options - ASL, deaf culture - is growing and it is very likely that in the years to come the professionals will not only advise implantation but also participating in the deaf communities at the same time as the best option for a deaf child.

Fuzzy

That is going to be our goal for the visist from the CI consultants..hope the whole meeting and tour will work out.

 

[jag]

Exactly how do the Deaf community find out who has deaf baby?? Not from the doctors because of privilege information.

What parent groups for children with Down Syndrome did was give information packets to ob/gyns to give out to parents who had been told their baby would/has DS. These include contact information and stuff. The deaf community could do the same type of information packet and ask the drs. to give to parents of a newly diagnosed child.

 

[jillio]

This activity is a perfect example of a potentially better world IF, right after (or before) the CI guys give their speil, that the ASL community would come in and present their own perspective along with a number of other groups who normally do this in places such as hospitals, etc. The Deaf/ASL perspective needs to be squeezed in there somehow....why has that been so hard to date? U guessed it! Politics! Sad, huh?

You hit the nail on the head, Tousi!

 

[jillio]

Exactly how do the Deaf community find out who has deaf baby?? Not from the doctors because of privilege information.

In my case, I sought out the Deaf community on my own. But it cannot be expected that all parents would do that. However, the medical community could set up contacts withthe deaf community to facilitate referrals, and then the parents could be provided that contact information. A second solution would be to have the parents sign a release of information so that the medical community could release that information. Schools, local health departments, and audiologists could all facillitate the process. In Sweden, all of these services are instituted at the time of diagnosis. It's simply a matter of it becoming accepted practice.

 

[jillio]

What parent groups for children with Down Syndrome did was give information packets to ob/gyns to give out to parents who had been told their baby would/has DS. These include contact information and stuff. The deaf community could do the same type of information packet and ask the drs. to give to parents of a newly diagnosed child.

Excellent suggestion.

 

[jackiesolorzano]

Exactly how do the Deaf community find out who has deaf baby?? Not from the doctors because of privilege information.

No the doctors wouldn't give you this information but if the Deaf community put together a booklet of info and gave it to the hospitals that do newborn screening then parents can get the info. While no one will give you personal info of parents, I am sure it would be quite easy to get ahold of these hospitals and the doctors that do the follow up testing.

 

[jackiesolorzano]

In my case, I sought out the Deaf community on my own. But it cannot be expected that all parents would do that. However, the medical community could set up contacts withthe deaf community to facilitate referrals, and then the parents could be provided that contact information. A second solution would be to have the parents sign a release of information so that the medical community could release that information. Schools, local health departments, and audiologists could all facillitate the process. In Sweden, all of these services are instituted at the time of diagnosis. It's simply a matter of it becoming accepted practice.

In our family when my children were diagnosis it was the other way around. They did not tell us that our children could be oral. They told us that they would never talk or read above a 3rd grade level and that is when I began to do some research. I was having ahrd time and at my kids first school I broke down and another parent saw me and told me about the JTC parent groups. What we can learn from both of our cases is that there is no consistent model in the US and there should be. There should be something put togther where parents can find out about all of their choices

 

[jillio]

In our family when my children were diagnosis it was the other way around. They did not tell us that our children could be oral. They told us that they would never talk or read above a 3rd grade level and that is when I began to do some research. I was having ahrd time and at my kids first school I broke down and another parent saw me and told me about the JTC parent groups. What we can learn from both of our cases is that there is no consistent model in the US and there should be. There should be something put togther where parents can find out about all of their choices

I'll have to agree with you on that, jackie. There is no consistency, and that is what is needed. Parents should not have to search out the information; all of it should be readily available to them. Nor should they be presented with one sided information. Unfortunately that is more often the case than not.

 

[rockdrummer]

Absolutely. Such an effort would definately require the input, the cooperation, and the assistance of the Deaf/deaf community. But I think that it is also going to require a bit of social revision in our perspective as a whole society. We are focused on the medical aspect of everything here in the U.S.. We are moving toward a more holistic approach, but there are still many practitioners and people in general who subsribe to the medicalized view of anything that falls slightly outside what the majority of society considers the norm. Overweight....get stomach stapling. Nose too big....get rhinoplasty. Aging....get a face lift. Got a cold.....take a pill. We are far too symptom focused, and are unwilling to see anything other than the quick fix. We look too much at the pathology, and not enough at the person as a whole.

Okay, done preaching now!

Agreed but I think education and awareness could do much to change the public perception. I never knew there was anything other than a pathalogical view towards deafness. I was shocked to learn about deaf culture (culture shocked) and that some deafies are not even interested in hearing. I know much more now than I did then and I also have to say that my view towards it has changed because of that newfound knowledge. Perhaps just making people aware can make enough of a difference. What I can tell you for a fact is if you don't make people aware, they will not ever change their view.

 

[rockdrummer]

Exactly how do the Deaf community find out who has deaf baby?? Not from the doctors because of privilege information.

I am not sure about privileged information. It it's true then perhaps lobby congress to make this information available to the public.

 

[rockdrummer]

In my case, I sought out the Deaf community on my own. But it cannot be expected that all parents would do that. However, the medical community could set up contacts withthe deaf community to facilitate referrals, and then the parents could be provided that contact information. A second solution would be to have the parents sign a release of information so that the medical community could release that information. Schools, local health departments, and audiologists could all facillitate the process. In Sweden, all of these services are instituted at the time of diagnosis. It's simply a matter of it becoming accepted practice.

All great ideas. In fact one might be suprised how receptive the medical community might be to this type of thing. It might even save them some lawsuits becuase now they can say that the person was aware of all optoins.

 

[jgearyAuD]

I agree. Unfortunately, we live in a capitalism-based society. I agree that there should be some government help.

 

[LTHFAdvocate]

Based on my personal experience, the correct approach to disseminate information on communications options to families who have newborns who have been diagnosed with hearing loss through newborn hearing screening programs is not through the medical community, but through Early Intervention, which is where all families with children who fail these tests get referred to.

These are the people who hand out the stacks of literature to the families, help them get referred for additional audiology/medical follow-up, etc.

Sheri

 

[jillio]

Based on my personal experience, the correct approach to disseminate information on communications options to families who have newborns who have been diagnosed with hearing loss through newborn hearing screening programs is not through the medical community, but through Early Intervention, which is where all families with children who fail these tests get referred to.

These are the people who hand out the stacks of literature to the families, help them get referred for additional audiology/medical follow-up, etc.

Sheri

The only problem with that approach is hat so amny of the EI programs are philosophy based.