Cochlear implant dialogue – Part 2

rebecca-with-ushers

This post is dedicated to Rebecca in the photo above and to her family and all families struggling with language decisions. Rebecca’s story is here. And big handwaves to friends in Auckland’s Deaf community who have encouraged Part 2.

So why Part 2? What’s going on? Well, Sym Gardiner and I have been emailing each other about the issues in Part 1 – my blog on Children’s Rights and Cochlear Implants (CI) and we’ve decided to make our dialogue public to help others. Sym’s daughter has a CI and Sym blogs here.

So, below is my original blog (Kevin:) followed by Sym’s comments (Sym:). Please feel free to comment. In Part 3 I’ll respond and we’ll see how the dialogue goes. We agree on lots of things, but most importantly we agree on finding out what’s best for the kids and we agree on the need for careful respectful dialogue. (Sorry about the spacing between the paragraphs – something is Wonkey Donkey in the wordpress editor).

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Kevin: The United Nations says all people have the right to a language. But some people in the Cochlear Implant industry are prepared to gamble with that right. The gamble is that a Cochlear Implant (CI) will be successful for the child. It’s a gamble because if the part of the brain that deals with language is not developed, then the child may never acquire a language, whether it be sign language or spoken language. There is only one way to develop the language part of the brain – via exposure to a proper language at a young age. Deaf people say Many audiologists have a medical view. They try to fix the ears and neglect sign language.

Sym: The “gamble” actually goes both ways. Is a Listen and Spoken Language (LSL) approach optimal in engaging the language side of brain development? Is a mixed SL/LSL approach optimal. Is a pure SL approach optimal. This is what this research is trying to provide parents with information about so they can make a decision. 
Kevin: A Cochlear Implant (CI) is a surgically implanted electronic device PLUS intensive speech therapy, which is why the videos of a child being “switched on” are misleading.

Sym: Hmmm… for older children getting CIs who already have developed language the switch on can be an immediate return of hearing. The way I look at it is that when CIs are switched on a CI user will have as good hearing as when they had before the operation. Probably better. For a child who was using HAs it will be better than when they left off their HAs for example. I agree to get the CIs working optimally there is a process – although it is not speech therapy as such.

Kevin: The implant is connected to the auditory nerve then the skin is sewn up and usually heals fine. An external wire goes from a hearing aid behind the ear to the head and attaches magnetically through the skull to the implant – so CAT scans are very dangerous.

Sym: No. This is incorrect. A better description is that an external sound processor captures and transmits sounds via radio waves to the internal implanted device. The transmission coil is attached magnetically to the head. 

Also there are absolutely no issues between CAT scans and CIs. MRIs however have to be managed carefully. All modern implants can handle 1.5T scans. Some can handle 3T scans.

Kevin: A CI kid needs continuous audiology appointments and ongoing intensive Auditory-Verbal Therapy. A CI needs enormous dedication and commitment from the family. It’s not a magic bullet. The CI industry also acknowledges that CI does not work in many cases.

Sym: Most kids are on 6monthly or annual audiology appointments. Some like my daughter struggle to go longer than 3 months. But she is quite exceptional.
 
AVT therapy is not generally needed after a couple of years. What is done in NZ is annual bench mark testing to ensure language development is progressing year for year.

Kevin: The CI industry often says that sign language for CI kids is not needed and may even stop them learning a spoken language. Research shows this is not true. Figures are hard to get, but an estimated 10% of CI kids cannot speak as well as their peers by age 5 and many have no language at all. The results are better if a kid has a CI for both ears which are implanted at the same time. The CI industry often says if the CI doesn’t work THEN the kids can learn sign language. This is an irresponsible gamble.

Sym: Actually the best research on language development for kids with CIs shows that 1/3rd are caught up by age 5yo. A further 1/3rd is caught by 8yo (from memory). And the remaining 1/3rd never catches up. This is from Ann Geers work. This is very concerning. Some factors that affect this could be the FDA guidelines that insurance companies use to delay child surgeries until the child is older than 12mo. In NZ we aim for 6mo. In addition the lack of good AVT services. Ann’s work is US based.
 
The %ages need much more work to understand. One thing also to remember is that these are kids who have profound hearing loss. They are the worst of the worst in terms of being able to hear. Many have causes (genetic, CMV, Meningitis, etc)  that have more than just hearing loss as impacts. It is estimated that 40% of CI kids have serious secondary issues… in many cases the hearing loss is the least of their issues.
 
Another factor is that many developmental issues do not become apparent until children are older. This is a challenge for the argument to use SL as some children have motor planning/control issues that make SL not a viable option. 

Kevin: So I was very interested to go to audiologist Julia Sarant’stalk (pdf) on Tuesday 9 August 2016 at the Hearing House in Auckland, New Zealand about these issues. The Hearing House paid for her meta study and the task was “to compare Oral Communication with Oral Communication plus Sign”. In her meta study, Oral Communication (OC) means teaching a CI kid a spoken language. As we will see below, it’s not clear from her meta study if “Sign” means a natural sign language or some other form of manual communication such as Signed English.

Sym: My understanding is it mostly means what you would call natural sign language.

Kevin: I met Julia over a cup of tea afterwards. She said she couldn’t tell me who wrote the poor studies which she included in her meta study because it was important to maintain good relations in the industry. She really feels for the grief that some hearing parents never recover from when a Deaf child is born to them. Often that grief harms the child as in this sad subtitled documentary where a 4 years old doesn’t know their name.

Many worried mums were at the talk and a few dads and some hearing and education professionals. The questions after the talk showed many parents were confused and worried about the choices they had made or would soon have to make for their kids. They looked to Julia and her meta study for reassurance. It was also clear that one or two of the professionals did not know how to evaluate a meta study.

Sym: The parents I know who were at the talk were not worried. They were interested but most had already chosen their child’s language path.
 
The study was commissioned because parents were frustrated at hearing two competing arguments with little or no robust research to substantiate either view.

Kevin: A meta study is not new research. It evaluates previous studies to try to find the truth (despite what postmodernists believe, truth exists).

Sym: I think I would disagree with you here. Personally I think the data and the logic points towards an LSL approach as being optimal. HOWEVER I would strongly encourage a family that had say one parent who exclusively used NZSL and one that used both spoken english and NZSL to take a bilingual approach. It would be crazy not to. Family context makes a huge difference.

Kevin: The conclusion of a meta study depends on what studies are included. A good meta study will try to cover the field. My preference is to avoid including poor studies in a meta study. However, it might report them in an introductory literature review or use them as examples of a failure.

Sym: Julia’s approach was to take ALL peer reviewed studies on this issue. I think she set a time cut off… maybe 1995 from memory… don’t quote me on that. As such none of the studies were ‘poor’ as such. 

Kevin: Julia concluded, perhaps wrongly as we will see, that for Deaf kids “There is no evidence that bilingual education [OC plus sign language] improves educational outcomes over oral education.” Her meta study (pdf) looked at 39 other studies, but only 32 are listed in her bibliography (and one of these is an outdated 2001 paper by Harris et. al. about how to rank studies when she should have used the current USPSTF Quality of Evidence guidelines). So we do not even know what the 39 studies were.

Sym: The copy of the paper was draft and should have been updated on the published version.

Kevin: She said they covered six areas:

  1. speech perception
  2. speech production
  3. vocabulary
  4. language development
  5. reading/literacy
  6. social development.

Julia rated one study as “good” for one of these six areas. All the rest were fair or poor for all categories.

Sym: As I say, this is a rating system. All studies were peer reviewed so had some level of quality. However the rating system is very critical.

Kevin: That result calls into question why other studies were not chosen by Julia to be part of her meta study. It is worth quoting in full from the Gallaudet University Linguistics Department which lists some of those studies:

Kevin (quoting Gallaudet University): To properly evaluate the effect of ASL [American Sign Language] on early English development, the appropriate comparison to make is between children raised with oral communication only and children raised with spoken English plus a full, natural sign language. Studies making this comparison have been appearing at an increasing rate, focusing on deaf cochlear implant users raised by deaf, signing parents. This population is relatively small but internationally studied. Recent research from Belgium (Mouvet 2013), Brazil (Quadros, Cruz, & Pizzio 2012), Iran (Hassanzadeh 2012), Italy (Rinaldi & Caselli 2009, 2014), the Netherlands (Giezen 2011, Giezen, Baker, & Escudero 2014), and the United States (Davidson et al. 2014) all report successful spoken language development for deaf cochlear implant users who are raised with natural sign language input. All of these studies have come to the same conclusion: There is no evidence that early exposure to a full, natural sign language obstructs spoken language development. In fact, Marcel Giezen (2011) concludes in his dissertation by saying that the evidence points to bimodal bilingual training as the optimal choice for cochlear implanted children, giving them the best chances for language success. (Source: Gallaudet University Linguistics Department)

Sym: I think the question is whether these studies were peer reviewed. Gallaudet has history of producing literature reviews of studies which have not been published in peer reviewed journals. 

Kevin: Why did Julia not mention a single one of these studies? When I asked her later via email which was the “good” study which she included in her meta study she said it was Teresa Ching: Ching, T. Y. C. (2015). Is Early Intervention Effective in Improving Spoken Language Outcomes of Children With Congenital Hearing Loss? American Journal of Audiology, 24(3), 345–348. http://doi.org/10.1044/2015_AJA-15-0007. Again, Teresa’s study is not in the bibliography of Julia’s paper. This is another oversight. I eventually got a copy of Teresa’s short paper, but have been unable to get a copy of the data on which it relies. It’s unclear from Teresa’s study how many CI kids also learnt sign language. When I emailed Teresa’s office and left two messages to clarify this, I got no response, though they had earlier emailed me the information which helped me track down Teresa’s study. Elizabeth Levesque presented a slide (below) about Teresa’s study which is known as the Longitudinal Outcomes of Children with Hearing Impairment (LOCHI). Elizabeth discussed the LOCHI data during her 2016 presentation to the Australian and New Zealand Conference for Educators of the Deaf (ANZCED). The slide also shows that the reported data from Terera’s study is unclear. Why? Because we don’t know how many of the 22% of LOCHI kids were taught natural sign language rather than some form of Signed English.

ching-2013-bimodal-bilingual-unlcear

So I am not convinced by the reliance Julia makes on Teresa’s paper to conclude that oral communication is better than oral communication plus sign language for language development.

Besides the studies above which Gallaudet reports, the Oxford Handbook of Deaf Studies, Language and Education also contains a chapter by Rachel Mayberry reporting the opposite of what Julia claims. Mayberry showed that Deaf children who learn to sign before they learn English can later learn to read and write English with native proficiency. But if Deaf children are taught spoken English as a first language but fail to learn it properly, then their chance of ever learning any language properly, whether sign language, oral language, or written language is zero. Mayberry also discussed two related and critically important points. First, language structures in the anterior left hemisphere of the brains of Deaf and hearing people are the same.

Sym: More recent research based on specialised MRI scanning is pointing towards this not being the case. It’s a very interesting field of current research.

Second, if these structures are not activated properly (in the early critical period for acquiring languages) then the child can never learn any language properly.

Sym: Early Intervention is critical. Everyone agrees here 🙂

Kevin: So in Julia’s meta study she asks us to believe in one study, and one study only, which she rated good and says supports her case. She does not give enough information for us to judge the worth of this study and she does not mention the other studies I have referred to here. This is not the way science proceeds. Science progresses by the whole scientific community reaching a consensus on all of the best available data as Naomi Oreskes shows in this entertaining and informative video. We need to share data, we need to know the details and we need to be able to test the claims for ourselves. Unfortunately I would rate Julia’s paper poor. It does not give any evidence, other than her rating of Teresa’s study.

A parent said to Julia during question time after the talk, “Your message is a great relief to me”. I am almost in tears as I write this because Julia said “There is no evidence at all that bilingualism helps.” I wrote down these words in my notebook as she said them. The words actually contradict her paper which said “There is limited evidence that early use of sign language may assist with the development of spoken language.” I’m not sure whether by ‘limited’ Julia means  ‘some’ (in a positive sense) or ‘very little’ (in a negative sense’).

Sym: There is very little research that points to this and it is very poor quality.

Kevin: In either sense, Gallaudet and Oxford Handbook contradicts this. There is lots of evidence that bilingualism (having both sign language and spoken language) can benefit both languages.

Sym: I’d love to see peer reviewed papers with studies of a decent size. The LOCHI study is robust because it is 400+ kids and is longitudinal. Other good studies are like 100 kids. Studies that are below 100 kids really are susceptible to the impact of sample selection.

Kevin: When asked by someone else in the audience about the evidence from Colorado which also contradicts it, Julia she said “I think it was one study.”

If parents were properly informed I don’t think they would take the risk of not teaching their CI kids sign language.

Sym: I don’t think this is right. Certainly not in my family’s case. We did heaps of research and made an active decision to take an LSL approach. In fact we have taken a non-gesture approach. So no pointing or hand movement. No lip reading. Just voice. 

The majority of families in NZ end up taking an LSL approach because they have no background in NZSL. It is possible that the millions of dollars the govt is pumping into NZSL may swing this. I suspect it won’t however because the success of CIs in the nZ context is very high.

Kevin: It is against the human rights of their child to gamble with language acquisition.

Sym: No. This is not correct. Parents make the choices for their children. They make those choices based on research and family context. Like with all choices we make in life, they are not without an element of risk. We make choices to vaccinate our kids for example. But a very very very small number of kids react to these and it goes bad. As parents we balance the risk. 

The UN charter thing is vague and is focused on the right to a language. Parents chasing CIs and an LSL approach are actively trying to give their children what they assess as the best possible language opportunities. This is completely consistent with the what the UN is talking about.

Kevin: Unfortunately by the time you discover your CI kid is behind in spoken language, it is likely to be too late. There are also heaps of stories on the internet from CI people who speak well but also wish they were taught sign language.

Sym: There are also many children who just moved on and dropped SL because they don’t use it and don’t need it.

Kevin: My call to action is to encourage parents to form strong bonds with the Deaf community and to have a fluent signer interact regularly with their child. One of the big myths is that sign language is hard to learn. I’m hoping to blog about that myth soon.

Sym: We looked at that as part of our decision making process. To be honest the Deaf community [attitude] was a major factor in deciding to have nothing to do with SL. From an anthropology point of view this is entirely explainable because of the isolation and size of the community. Such communities tend to feel ostracised and develop aggressive tendencies as a norm to compensate. Such behaviour is moderated in the mainstream culture.
I think the biggest challenge in this area is that which ever language parents whose for their child, it is important for them to be immersed in it. Parents are the crucial facilitators of this immersion. It is simply not possible for a parent without existing good SL to provide that immersion. While some basic SL can be rapidly learned, children (even very very young children) need exposure to those complex grammatical structures and vocab. It is simply not possible to gain this level of SL quickly enough if there is no background already.
In terms of the bonds with the Deaf community, the challenge is for families with CIs to feel welcome. Currently many of us do not because we have chosen not to use SL. You might find this article interesting…
While this family has chosen a different path, they face some of the same struggles in terms of interacting with the Deaf community. The Deaf community does need to realise that the development of a “parent choice” and LSL communities is because of parents being tied of being told explicitly and implicitly they have made bad decisions. In a sense the “Deaf” tag has been claimed by the SL community which has caused those not wanting the SL element to be driven away.

Kevin: This all fills me with sadness for the kids who are missing out.

Sym: Don’t be sad. The kids and their families aren’t sad.

Kevin: 30 Sep 2016 edit: A friend thought I was against Cochlear Implants. Have a look at this 1 hour and 4 minute video and you’ll understand by the end of the video what I really think. The story of Leah Coleman and her mom Rachel Coleman. Rachel’s blog about CIs also has 2 vital insightswhich I have learned from. 1. Leah wasn’t trying to learn English with her cochlear implant. She was already fluent in reading and writing. Her focus was entirely on learning what English sounded like and how to make those sounds herself. 2. Speech is a skill that your child has a lifetime to acquire.

Sym: I would not agree with this. Motor planning development, crucial for speaking, needs to be laid down very early on. Learning another language latter tends to mean you speak with an accent.

Speech is not a language. Speech is one way to deliver a language.

Kevin: (I’d like to thank the friends and members of the Deaf community who made very useful comments on earlier drafts of this blog.)

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