Criteria for a CI candidate?

[shel90]

I have been reading a lot about CIs, how they function, how they work for some AD members here, and the criteria of hearing loss required.

I dont know if this was brought up before but here goes....

At my work, we are seeing more and more deaf children with other disabilities like mental retardation, autism, and a few others recieving the CIs. Now get this, one summer I worked for a public school working with a few of my students in their home school and that school served mostly hearing children with moderate to severe needs such as mental retardation, wheelchair bound, and so many more. Anyways, I saw this one girl from another class who was pratically in a vegative state and in a wheelchair. She had a CI and I asked her teacher about it. She said the doctors told the parents that with the CI, it was one less disability to worry about. I was SHOCKED beyond belief! I asked the teacher if she got the CI in this condition and the teacher said yes and that the parents were hoping the CI would bring her a little bit from her current condition. I asked the teacher if it worked and she said that she had the CI for 2 years and saw no improvement in her cognitive abilities. I was so speechless but I have to remember that this teacher had no training in deaf education so I couldnt really rely on her word due to her lack of knowledge of CIs. The point is that this child whose congnitive abilities are so severely delayed that it is almost in the vegative state and yet, she recieved a CI? Why?

Now, we are seeing more students at my work with those kinds of disabilities with CIs or in the process of getting CIs.

When I was studying for my master's at Gallaudet, I was taught that one of the criteria to meet the candidancy was to have normal congnitive (geez I cant find the right word) abilities. Apparently, the criteria continues to change doesnt it?

Do u think it is worth all the time and money to put CIs on children with moderate to severe congnitive delays such as retardation and autism or should doctors and parents take the risks for hopes that the CI will help their child's severe conditions?

 

[Hear Again]

Shel,

Why should someone who has moderate to severe conginitive delays or is in a vegetative state not deserve to have a CI?

I heard a story about a CI user who was severely ill and drifted in and out of conciousness. She spent weeks in the hospital and as a result, the batteries in her CI processor died. She no longer responded to sound or tactile stimuli, but once a family member changed the batteries in her processor, she was more alert and could have simple conversations.

I also know children who have Down's Syndrome and autism who have been implanted. Even if a child can only hear environmental sounds with a CI, I think that can be just as beneficial to their quality of life as being able to understand speech with a CI. Besides that, think of the safety factor. What if a child is playing outside and doesn't hear an oncoming siren, car, etc.?

Personally, I don't think children or adults with multiple or severe disabilities should be denied the right to have a CI. They have no less of a right to hear than those of us with a single disability.

I agree 100% with the doctors who said that a CI can mitigate this child's other disabilities. I think it's unfair to automatically conclude that a child with severe or profound cognitive disabilities cannot benefit from a CI without being implanted.

As you said, since this teacher did not have any training in deaf education, perhaps she wasn't aware of the signs that indicated that this child was indeed benefitting from a CI. People have various opinions as to what is meant by "benefit" when it comes to CIs. For some, "benefit" means being able to hear environmental sounds while to others it means being able to hear on the phone.

It would be interesting if you could talk to the parents of this child to find out what their perspective is. Perhaps this child is benefitting more from her CI than others realize

 

[LuciaDisturbed]

Shel,

Why should someone who has moderate to severe conginitive delays or is in a vegetative state not deserve to have a CI?

I heard a story about a CI user who was severely ill and drifted in and out of conciousness. She spent weeks in the hospital and as a result, the batteries in her CI processor died. She no longer responded to sound or tactile stimuli, but once a family member changed the batteries in her processor, she was more alert and could have simple conversations.

I also know children who have Down's Syndrome and autism who have been implanted. Even if a child can only hear environmental sounds with a CI, I think that can be just as beneficial to their quality of life as being able to understand speech with a CI. Besides that, think of the safety factor. What if a child is playing outside and doesn't hear an oncoming siren, car, etc.?

Personally, I don't think children or adults with multiple or severe disabilities should be denied the right to have a CI. They have no less of a right to hear than those of us with a single disability.

I agree 100% with the doctors who said that a CI can mitigate this child's other disabilities. I think it's unfair to automatically conclude that a child with severe or profound cognitive disabilities cannot benefit from a CI without being implanted.

As you said, since this teacher did not have any training in deaf education, perhaps she wasn't aware of the signs that indicated that this child was indeed benefitting from a CI. People have various opinions as to what is meant by "benefit" when it comes to CIs. For some, "benefit" means being able to hear environmental sounds while to others it means being able to hear on the phone.

It would be interesting if you could talk to the parents of this child to find out what their perspective is. Perhaps this child is benefitting more from her CI than others realize.

Exactly what I was thinking, but you worded it better than I could!

 

[shel90]

Shel,

Why should someone who has moderate to severe conginitive delays or is in a vegetative state not deserve to have a CI?

I heard a story about a CI user who was severely ill and drifted in and out of conciousness. She spent weeks in the hospital and as a result, the batteries in her CI processor died. She no longer responded to sound or tactile stimuli, but once a family member changed the batteries in her processor, she was more alert and could have simple conversations.

I also know children who have Down's Syndrome and autism who have been implanted. Even if a child can only hear environmental sounds with a CI, I think that can be just as beneficial to their quality of life as being able to understand speech with a CI. Besides that, think of the safety factor. What if a child is playing outside and doesn't hear an oncoming siren, car, etc.?

Personally, I don't think children or adults with multiple or severe disabilities should be denied the right to have a CI. They have no less of a right to hear than those of us with a single disability.

I agree 100% with the doctors who said that a CI can mitigate this child's other disabilities. I think it's unfair to automatically conclude that a child with severe or profound cognitive disabilities cannot benefit from a CI without being implanted.

As you said, since this teacher did not have any training in deaf education, perhaps she wasn't aware of the signs that indicated that this child was indeed benefitting from a CI. People have various opinions as to what is meant by "benefit" when it comes to CIs. For some, "benefit" means being able to hear environmental sounds while to others it means being able to hear on the phone.

It would be interesting if you could talk to the parents of this child to find out what their perspective is. Perhaps this child is benefitting more from her CI than others realize.

This child went to another school in a public mainstreamed program. It was a summer program at another school.

I never said they didnt deserve them. I was just shocked to see that since during my studies at grad school, we were taught about those criteria and one of them was that the child must be of normal functioning without any mental retardation, autism, and any mental illness so it stuck in my head. To see the opposite really was a shocker but not in a bad way. I havent seen any differences in our special needs students after they got their CIs but it is still too early. I was simply asking why did they change the criteria..maybe some new research that I missed or what?

It is still too early for me to form an opinion cuz I havent seen a case where the child with severe congnitive delays benefit from the CIs yet. U have so I guess if it does help migitate the other disabilities then go for it.

 

[Hear Again]

Shel,

Thanks for clarifying your post.

Yes, research has been conducted over the past several years showing the benefits of implanting children with severe cognitive disabilities.

Unfortunately, when it comes to CI criteria, many people (including those in deaf education programs) are misinformed because of how quickly they change.

For example, it was only recently (around 1999 or so) that people with severe and severe-profound hearing loss could be implanted. Prior to that time, a person had to have *no* amplifiable hearing to be a CI candidate.

 

[LuciaDisturbed]

I was just shocked to see that since during my studies at grad school, we were taught about those criteria and one of them was that the child must be of normal functioning without any mental retardation, autism, and any mental illness so it stuck in my head.

The criteria have changed since them, I'm sure, but I still think it's shitty to say that one cannot have a CI because one is mentally retarded, autistic, or mentally ill. I believe there is a girl here on this forum that has bipolar and she got a CI. I don't see anything wrong with that. Whoever dreamed up those criteria is very wrong.

 

[shel90]

Shel,

Thanks for clarifying your post.

Yes, research has been conducted over the past several years showing the benefits of implanting children with severe cognitive disabilities.

For example, in the past many doctors refused to implant children with cerebral palsy, but it's becoming more commonplace today.

With the research that has been done, CI teams are becoming more open minded and aware of the benefits people with serious or profound conginitive delays can receive from a CI.

I graduated in 2002...things sure change so fast in such a short time!

 

[shel90]

The criteria have changed since them, I'm sure, but I still think it's shitty to say that one cannot have a CI because one is mentally retarded, autistic, or mentally ill. I believe there is a girl here on this forum that has bipolar and she got a CI. I don't see anything wrong with that. Whoever dreamed up those criteria is very wrong.

Apparently that was from the old criteria from John Hopkins University's CI center. That was like 5 years ago when I took a class about CIs. Guess things have changed cuz that same CI center is admitting children with cognitive disabilities.

 

[Hear Again]

I graduated in 2002...things sure change so fast in such a short time!

Yes, they do! In fact, it was only recently that a research study was released which indicated the benefits deafblind people receive from CIs. Prior to that study, no one really understood how CIs could benefit the deafblind.

 

[deafdyke]

Hear Again, I'm 100% for kids with multiple disablities getting them......but someone with an extreme profound disabilty? I can't quite see the point. Besides, I thought at that level of functioning (PVS) any sensory impairment was what do you call it......the kind of loss where the person can hear but doesn't have the brain activity to interpret.
I definitly think profoundly MR kids should get it if eligable. But, getting a CI for a kid in a PVS seems to be the equalivant of getting them a fancy car for them to drive.

 

[Hear Again]

DD,

There have been reported cases of PVS where a patient's condition has improved greatly from what was originally expected. Not all PVS patients are completely unaware of or unable to interpret their environment. Just look at the case of Terri Schiavo.

Additionally, the drug Zolpidem has been cited in various medical reports (primarily the UK) as waking patients with PVS and dramatically improving the condition of people with brain injuries.

Furthermore, what about cases where a person has been misdiagnosed with PVS who is actually in a minimally invasive state? It would be unfortunate if a person were denied a CI based on the diagnosis of PVS when, in reality, they are in a minimally invasive state -- or better.

Here is an article from the Edmonton Journal which discusses a car crash victim showing brain activity despite signs of being unaware of her environment:

Scan reveals brain activity in vegetative state

Given the above factors, I don't think PVS patients should be automatically excluded from receiving CIs.

 

[Lillys dad]

Shel, The criteria for CI candidacy is, and contiunes to change. Lilly was implanted in sept of 2005. When she was implanted, she was one of the youngest in the midwest, and the youngest to recieve the freedom. She was 18 months. We were told that her age was pushing the limits. Now, they just implanted a 5 month old! The criteria is constantly changing, along with the techniques. As Doctors learn more, everything changes.

I dont see the problem with a severely disabled person (regardless of age) being able to get a CI.

 

[Hear Again]

Children are being implanted at younger and younger ages. Here's a news story about a newborn who received a CI at 3 months of age:

canberra.yourguide




Cochlear implant success is music to the ears
Danielle Cronin


Rhonan Scowcroft will soon hear his parents' voices and his sisters' giggles for the first time after he became the youngest Australian to receive a Cochlear implant.

The 3 month-old boy is also one of the youngest people in the world to have a bionic ear, which will be switched on by an audiologist in a few weeks.


His mother Tammie said last night after arriving home from the Sydney Cochlear Implant Centre that Rhonan was 10 hours old when his hearing problem was picked up through the newborn screening program at Canberra Hospital.


Two subsequent tests confirmed Rhonan was profoundly deaf.


The couple's five-year-old daughter Brionee was born profoundly deaf and had a Cochlear implant a week before her first birthday.


So Tammie and her husband Brad, who live in Calwell, again turned to the Sydney Cochlear Implant Centre for help.


"Our daughter did so well with it and while she has wonderful speech, she still missed that first year where sounds are the most important and they take it all in and they remember them," Mrs Scowcroft said.


"So we had to start from scratch when she was already a year old.


"We found out they were doing it younger and we decided that we were really keen to see if there'd be a difference in his language if we had him done sooner."


Mrs Scowcroft said Brionee was "doing amazing" at kindergarten and was only about eight months behind her classmates.


Teachers had reported her favourite activity was talking. The couple also has a seven-year-old daughter Eilysh and three-year-old daughter Ainzlee who do not have hearing problems.


Brionee's positive outcome convinced the Scowcrofts to go ahead with Rhonan's surgery earlier than his sister's.


Surgeon Dr Catherine Birman said children usually received Cochlear implants when they were six to 12 months old.


But the age was "coming down" as people realised the benefits, particularly for the child's speech development.


It was tricky to operate on Rhonan because of his size and age.


The inner ear was normal size at birth but other parts such as the middle ear cavity were very small and grew with time.


"The main thing is the facial nerve comes out on the side of your skull whereas in an adult, it comes out actually underneath your skull," Dr Birman said.


"So we've got to be very careful that we don't damage the facial nerve even with a skin incision."


She successfully performed the operation on Monday and the family returned home last night.


Mrs Scowcroft said her son coped well with the surgery and was back to his "happy, always smiley, very chatty" self yesterday.


"We can't wait 'til he can hear our voices very excited," she said.


It costs about $70,000 to put a person through the Sydney Cochlear Implant Centre's program including $24,070 for the bionic ear.


The centre receives some public funding to purchase devices and it runs fundraising activities to make up the shortfall.

 

[Lillys dad]

WOW! 3 months! Im very happy that the baby was diagnosed at birth. I am convinced Lilly was misdiagnosed at birth. We were in the hospitla 5 days following birth. The state of Missouri requires newborn hearing screening. Lilly failed the first two times. We were assured that she failed the test due to "fluid in the ears, and she would pass the test" The last day at the hospital, less than an hour before we went home, Lilly miracously passed the test. W were told she could hear fine, and if we suspected a hearing loss, to follow up with her doctor by the time she was three years old.

 

[Cloggy]

I started a thread with an article of a girl implanted bi-laterally at age 5 months...

But regarding your first post, Anything that would help communication with a person is worth while.!

 

[deafdyke]

she still missed that first year where sounds are the most important and they take it all in and they remember them,"

*rolls eyes* Sounds are important, but come on..........sounds like the mom bought into the hyper early intervention stuff.....exposure to sound is just SO important. Kids need to hear and be hyper therapyized 24/7. After all, it is a hearing world.
If that's true, then how come I and a lot of other dhh kids did fine with sound and speech, despite being identified late? I mean....don't wait til the kid is two or three, but come on.........

Hear Again, I know about minimally consciousness state, and I do know about the Terry Schaivo case. That was a HUGE topic in disablity rights circles.
It's just such a hard subject........and I mean I really thought that most PVS/MCS sensory impairments were due to cortical issues, rather then coachla or other issues.
It is hard to really tell how severely a person is affected by their disabllites.

 

[Cloggy]

Adjusting your quote a little....

*rolls eyes*

Sounds are important, but come on..........sounds like the mom bought into the hyper early intervention stuff.....exposure to sound is just SO important. Kids need to hear and be hyper therapyized 24/7. After all, it is a hearing world.

If that's true, then how come I and a lot of other dhh kids did fine with sound and speech, despite being identified late? I mean....don't wait til the kid is two or three, but come on..........

Would that be an accurate representation of your post??

I would disagree with you.
A child that is newly born allready has heared. Not hearing until the child is 1 means it misses more than 1 year of hearing, 1 year off the soothing voice of it's parents, 1 year of connections that need to be made in the brain.
I one can prevent this from happening, that would be great.
Not just for the child, also for the mother and father.

 

[sr171soars]

Adjusting your quote a little....

Would that be an accurate representation of your post??

I would disagree with you.
A child that is newly born allready has heared. Not hearing until the child is 1 means it misses more than 1 year of hearing, 1 year off the soothing voice of it's parents, 1 year of connections that need to be made in the brain.
I one can prevent this from happening, that would be great.
Not just for the child, also for the mother and father.

Er...it is more than one year as all hearing pre-born can hear in the womb. They already know their mother's and father's voices. That is an incredible thought that when an infant is born...they already know the two most important voices...

 

[Hear Again]

Hear Again, I know about minimally consciousness state, and I do know about the Terry Schaivo case. That was a HUGE topic in disablity rights circles.
It's just such a hard subject........and I mean I really thought that most PVS/MCS sensory impairments were due to cortical issues, rather then coachla or other issues.
It is hard to really tell how severely a person is affected by their disabllites.

Yes, you're correct. PVS is due to cortical issues, but again, if the actual diagnosis is minimally invasive state (or better), there would be evidence of brain activity and some awareness of one's environment -- none of which has anything to do with the cochlea.

 

[Cloggy]

Er...it is more than one year as all hearing pre-born can hear in the womb. They already know their mother's and father's voices. That is an incredible thought that when an infant is born...they already know the two most important voices...

I agree. That's why I said "Not hearing until the child is 1 means it misses more than 1 year of hearing" but I forgot to follow it through after that sentence...
You're right.