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Parliament: Cochlear Implants & National Institute for Health & Clinical Excellence

nihce.gifLast week there was a debate in parliament about the National Institute for Health and Clinical Excellence. Within this debate, there was reference made to cochlear implants, and wider benefits not being factored or measured when making a budgetary argument. This suggestion was made by the RNID:

Sandra Gidley (Shadow Minister, Health; Romsey, Liberal Democrat)

... That might be a little unfair, but many patient groups feel that they are treated unfairly and that wider benefits are not fully taken into account. It would help the public accept some of the decisions more readily if they were reassured that such factors had been taken into account. The then Minister of State, Department of Health, who is now Secretary of State for Culture, Media and Sport, came before us at the time and said that he was satisfied with the situation. Sadly, such is the reputation of politicians that the public do not regard that as quite enough evidence.

That aspect came up again yesterday when I was at a reception that was hosted partly by the Royal National Institute for Deaf People. NICE is looking into cochlear implants. One of the concerns raised—it might be a false concern—was that while there would be savings for the education system because children with cochlear implants could engage in mainstream schooling, that might not be fully factored into the equation. It is clear that a one-size-fits-all solution is difficult to arrive at when examining wider impacts.

Since there's a current review on the case for bi-lateral cochlear implantation, any cost argument will be politically motivated by this.

Comment from Alison:
I really wish deaf organisations would stop giving out mixed messages here, and the onus for the deaf person to fit within society to be a cost benefit. Push cochlear implantation, because it would save money. Perhaps for some, there might be less recurring cost, but essentially it also gives a strong message with a CI you aren't meant to be demanding speech to text (or whatever rocks your boat) as far as access goes. It gives a strong message that the individual is solely responsible for fitting, and appearing "normal".

It is also bad policy reasoning, and moves away from an *individual* decision, without pressure. It starts to get dangerous as you trample onto an interpretation of a duty to have medical intervention, because you cost society money (another false argument). This is not a message that politicians need to be given, because it will have a ripple effect on the rest of us including children. Deafness should not be a cost-benefit exercise, and the same exercise is not frequently performed at the justification of women, black people, gay people etc.

For this reason alone, there needs to be Deaf input into this review, as like it or not it will have implications for the rest of us, and an undue pressure in medical settings or even an expectation to have an operation.

As a side note, I've worked with many children who have CIs. One summer I attended an event, where I had to deliver training, and one child in particular was extremely disruptive. They were told to go out from group settings etc, and demanded to go home. During the break I talked to this child one to one, and just let them talk. It transpired that they once attended a deaf school, and they were bribed into a CI by being told they could have a pet. After switch on, the child was transferred to a mainstream school; where they said they had no deaf friends, and found it difficult to communicate. Stating that they wanted to run away and they hated it. During the course of the residential, the child became more placid, co-operated and no longer wanted to go home (the place and to re-call the parents to tell them this). When the parents came to pick up the child at the end, they demanded to meet the person who "managed to control their child". The only response I was able to give them, "I just listened". It is stories such as this, that need to be remembered when people are policy pushing the you must fit into our agenda.

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Comments (8)

Reading this had made me "tear" Like my time oralism was the same.
"THEY" want to persue success at my expense and done it well but forgotton I need to continue life into adulthood alone. Out there life is a bitch at both side of the field deaf and hearing and for CI am really concerning their well being managing acceptance.

I hate those manipulators but why dont you look and study social workers their input mmm......I like to see what is going on.....

It is interesting that they never learn from past mistakes, especially people from our generation (integration regime). No matter how much you are enforced to be normalised, it is hearing people who push us into a corner.

When will they learn from history and accept that deaf-kind is a social phenomenon. My biggest fear will be the moment when the CIs of today will come back to bite them on the bottom.

I remember the days as a young man with a chip on my shoulder, it is inevitable that this will also happen to the upcoming CIs. They will need youth works, sign language training, consultation, counselling, support networks (everything I had), and sign language interpreters, and this will cost a bomb!


You hit the nail.
The problem is who do you tell and give "them" the warning of what to come.
That is why I asked the question about social workers input....I see nothing here….

UKCOD poo pah RNID oh no forget it...NDCS really?

Not forgetting its speech to text they need cos they have not had any signing/learning input and made worse at being "englished mainstream"

Some can do well others can't - it just where you come from in the family and the postcode lottery of support that goes with it.

Sad - we don’t have a deaf focus signing classes just only for deaf people. Most tends to gear for hearies to get rich on our deaf back sorry cynic speaks John....

Ah well ...life goes on and the chip say put!! but I am more vocal now to tell "them" to back off and listen (in a diplomatic way now) and some do now - so it just a matter of keep doing it until we get an intelligent champion in the government system to look into this.

One thing that keeps coming up and up is the confusion with BSL and Deafness. BSL/Cultural is a language issue where Deafness is diversity of people with different coping needs working and listening in different ways that is where the government need to sit and think on - in order to address the "ACCESS" issue that enables and empower us to lead independence lives.

One example came up that I had to laugh …A deaf senior was giving a talk and asked if anyone in the audience can signed – a hearie says with confidence I can – so he welcome him up on the platform and asked him to signed British Sign Language – so he did and a roar of laughter came up from some deaf people in the audience. The person sign like this – flat hand out up and down for “British” ok? Next “sign” signing a book urmpp…then “language” with the letter “L”

So he had his training and that was the result says the senior deaf man so what going on?

You can be part of the setup ) (re: implanted children in mainstream settings) but the real question is, can you and will you ever belongs? How this girl feels is remarkably similar to what I have been through. I have been switching sides (deaf/hearing worlds) for the 1st 22 years of my life and the more as I get older, the more distinct I feel from my hearing peers and the more empathy and connection I feel among my Deaf peers. I put it down to experience and being able to see things more retrospectively as I get older. Now, my foot is firmly in the Deaf world. This doesn't means I am anti anything that is not Deaf - quite the opposite. I am just saying this is where I belongs and I feel comfortable here.

I, too, fear pushing CIs children into mainstream settings will cause just as much collateral damage as did the oral teaching philosophy, that occurred much of the 20th century (when signing was banned). The one-size-fits-all approach did NOT turn out to be the right way back then and using costs analysis to drive this old argument over again is sheer bloody-minded fallacy.

Then again, why RNId is using the cost analysis' angle to put this CI argument forward? I thought CIs are meant to be so wonderful in its own right and their benefits should completely outweigh any other options.......or is there something we are not aware of? We need more data on to see if CI/Mainstreaming model is working or not before Government can use the costs analysis's argument otherwise there is nothing to compare against!

My HTML programming is bit iffy tonight! :-)

The 1st paragraph was meant to show this:

You can be part of this setup (click on my very long link above!) but will you and can you ever feel you belongs? I can see how this girl feels as I went through similiar emotions long time ago when I switched between hearing and deaf worlds on numerous occasions. The older I get, the more retrospective I get and I become more aware that I am not like my hearing peers and I feel more connection with my D/deaf peers. Now, my foot is firmly in the Deaf world, which doesn't means I am anti anything that are not Deaf. Just that this is where I belongs and I am comfortable here because these people understand me and they 'get' me.

@Tony B - closed the tag for you.

You are too kind :-p

There is a recent piece of research that clearly shows that CI is not a cost-saver in education anyway (i.e. aside for the dubious nature of basing this kind of decision on economics). If you're interested, mail me and I'll track it down for you if you can't find it yourself.

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