University of Edinburgh
 

Language and Deaf Education: Into the 21st Century

March, 2006

Greg Leigh -

Early Identification, Cochlear Implantation, and Sign(ed) Language: Issues for a New Era

Notes from presentation

I am happy to add my thanks for the opportunity to be here. I met Mary in Australia where she gave a great presentation on her research. An observation on this morning: Mark mentioned cognitively mediated word learning - Abizilian - I was reminded of another cognitively mediated word learner - George Bush - someone said a Brazilian was killed in Iraq and he asked how many a Brazilian was!

Those of you who know my work will know that I have worked in teacher pupil interaction, time captioning and evaluation of signed bilingual programmes. However when you get an opportunity to talk to a conference with this heading it seemed a great chance to talk about our situation in Australia especially in New South Wales.

We have been through some issues that you are experiencing. The zeitgeist - issues that are intensely played out in our environment particularly given our history of cochlear implantation.

Some of the geographic context is to show that the state of New South Wales - is not the largest state in size but in terms of population it is. I thought the UK population was more evenly spread. We have a similar situation in the numbers of people and the numbers of deaf children.

Relative size is that our 6million people are in an area 10 times the size of Scotland. Geographic spread means different issues.

So what can we learn about Australia? I would like to come to the issue of Universal Newborn Hearing Screening. A colleague of mine Melissa Wake wrote that Australia did not do well in the detection of hearing impairment. That was in 2002. The minister for health in New South Wales then created a feasibility group which I was in charge of and it was to look at the feasibility of introducing Universal Newborn Hearing Screening. By the end of 2002 he just wanted to get on and introduce it (the deadline was by December 2002 for a total roll out of the programme.

We now all call it State-wide Infant Screening for Hearing (SWISH) from 1 December 2002. Screening went live through every hospital and in communities too. These data relate to 2005 June: every public and private hospital and in every community location - 208,000 babies have been screened. The coverage rate is 95%. This is because some of the hospitals are close to borders where screening does not take place.

  1. 179 children with a significant bilateral hearing impairment were identified.
  2. the referral rate is for about 1 case for every child screened.
  3. the diagnostic follow up rate is 97%.
  4. those who are lost are also followed up - largely they are in aboriginal communities.
  5. in US it is 40-50%
  6. good state care leads to good follow up.
  7. the diagnosis has fallen from 18 months to 1.6months.
  8. the average age for first hearing aid fitting is down to 3.8months.

What do we know about the impact of Universal Newborn Hearing Screening? According to Yoshinago-Itano in Colorado children who are identified early with hearing loss (under 6 months) have shown higher development than those identified later. Yoshinago-Itano are saying they have normal (low average) normal outcomes if they are identified early.

If you compare them with children identified later then we see the adjusted mean language quotient for the age groups. we see that the language outcomes are (missed information).

The advantages of the early identification were not stratified - they showed at every socio-economic and every ethnic groups it was also for children with hearing loss and children with additional disabilities.

This was the same for children who used speech and those who used BSL. For those who had early access to a signed language their outcomes were high - so the benefits flowed across both groups.

In a related set of studies Yoshinago-Itano and her colleagues showed that there was data to show better speech intelligibility and better language development and better social-emotional development and better development of self concept and also better emotional availability, and parental attachment and also there was faster resolution of grieving.

There has been no study like Alys's study in New South Wales but there will be one under the auspices of the Australian Hearing Authority to look at the outcomes of the children who were early and late identified. There is a target enrolment of 400 children - they will be assessed at 6 month intervals. We are waiting for the outcomes of that research.

Let’s look at cochlear implantation - Sue said 2,500 children implanted in UK - that is out of 60million. In New South Wales there has been 700 children out of a population of 6million. So a higher penetration in New South Wales. There is one cochlear implant programme in Sydney under Bill Gibson - he has done 1,250 implantations. The cochlear website shows some of these statistics -70,000 world wide implants.

New South Wales has more cochlear implants than anywhere else in the world - so a microcosm here. The public perception of implants is high - I haven't been anywhere else in the world where a taxi driver asks you about cochlear implants when you tell him you work in this area.  There are high expectations associated with this kind of impact.

We have observed a phenomenon (anecdotal). the Royal Institute for Deaf and Blind Children has a diagnostic assessment - our audiologists tell us that close to 100% of our parents ask intelligent and meaningful questions about cochlear implants. What has been the overlap of this rapid significant and comprehensive move to screening. To gain some understanding we have to look at the status of implementation prior to screening.

Since 1992 there have been 162 children implanted under 22 months (that is, as infants). when we look at that group the youngest is under 5 months right through to 24 months. The average age is between 18 months and 2 years of age. When we look at those implanted since Universal Newborn Hearing Screening we see the comparisons with those implanted prior to Universal Newborn Hearing Screening.

I will pass comment on this later.

We have gone from a situation where if we look at those identified since Universal Newborn Hearing Screening and accept the figure that of that we would expect to see 10-12% of them being profoundly deaf - in fact we have had 26 as opposed to 18.  Apart from all but 2 of them 100% of the profoundly deaf have been implanted.

What does that mean in population terms?

We have an average age of diagnosis of 1.6 months. we have the high expectations associated with implantation. The trend is not completed. I enjoyed the talk with John about the prevailing 'zeitgeist' about children with special needs in Scotland. In New South Wales we have an absolute inclusive education policy.

We have a heady mix for where we go from there. If we look at what we know about the impact of cochlear implantation. Are there high expectations amongst families?

I have to say that I have been far from an advocate of early implantation. If we stand back and look at the literature what can we say about implantation?

Language acquisition is improved after implantation (a lot of studies around to show this). We are talking about rate of acquisition not overall achievement. Peter Blamey and others demonstrated the rate of development was higher. Svirsky and others said normal rates of spoken language acquisition occurred. The process of getting to that outcome has been the same as for hearing children.

There are other factors at play too. These will be obvious to you -

  1. length of experience with the implant
  2. family support and engagement - that is the same for all deaf children
  3. the amount and type of rehabilitation
  4. any other conditions or disabilities
  5. the age of implantation
  6. the educational setting and communication mode.

I am interested in the last two factors.

What about age?

Studies looked at earlier vs later implantation. Pre- and post-5 years of age. Better speech production, perception, higher vocabulary and reasoning scores for children implanted before 5 years as opposed to those after 5 years.

What do we know about those implanted even earlier - research is very thin. Keen to see the data from NIL study in Australia. Hammes in 2000 did a study of 47 children - all children received implants before age of 4 - those before 18 months - had language acquisition rates similar to hearing peers.  4 children in study acquired language skills at rate and level similar to peers. Limited evidence from other studies that implantation before 12 months has a significant effect.

One from Tomblin et all looked at 29 children - age 10 months to 40 months having implantation -
68% before age of 1
Repeated language measures taken of factors listed - most significant amount of variance in language outcome was age of implantation.

For a cochlear implant sceptic like me - if time I will come back to this.

Other issue - the impact of educational setting - I published Yoshinago-Itano publication - nice if you bought it - we wrote a preface to that book. We wrote this:
“it is apparent that improvement in cochlear implant technology and the advent of improved and more effective pedagogues for auditory-oral communication development have accounted for an increasing exclusion of consideration of alternative communication approaches (including sign language _ as a 'first choice' or even coincidental option”

Leigh and Power - before the advent of Universal Newborn Hearing Screening

Now - we observed another phenomenon - seeing no decrease in later enrolments in programmes using (information missing) something happening between there are there. Children not going into early intervention - some children ending up in pre-school and school programmes using sign communication later down the track.

In that chapter quoted Marc and Pat Spencer – “one thing we have known for a very long time indeed is... that no single method of communication is going to be appropriate for all deaf children”

Some children might end up doing this. What worries me is that what we risk for those who start out auditorally orally - we have squandered the benefit of Universal Newborn Hearing Screening - I have data that show this.

You will know Trevor Johnston - a colleague of Mary's. We were commissioned to do a programme - we identified some factors in that programme that could account for what we believe are diminished outcomes ... principle among factors - late arrival. Children who came into the sign bi-lingual programme at increasing older ages, who came into it as initial language learners of sign language. The phenomenon I am talking about; 36 of children on programme - their score at receptive skills test - on this line we see time children were in bilingual programme - 0 to 120 months and their scores on mean of 100. A beautiful correlation. We should be seeing children bringing their sign skills at age appropriate levels. Effect of late arrival, ineffectively matched with language they will use, late start in sign mode, enjoying none of the benefits of early identification.

What does this tell us? I have longer, good, better.

Effectively in that chapter we spoke of two possible strategies to ensure we don't squander the benefits of Universal Newborn Hearing Screening. Two ways we could make sure all children, whether implanted or not, once identified early, had opportunities to an accessible language system.

Albertini and Hintermyer - the notion of early diagnosis and early implants - two languages. A process of more effectively identifying children early on - dual access to language would be a necessary feature of their ongoing development.

I have raised these two; the first of them is one we have in programmes I was associated with, attempted to establish.

Be exposed to sign language with strong auditory input.  In 'zeitgeist' - where expectations are so high among implantation - seemingly unsuccessful attracting families to such an option. In climate of raised expectation - that families are required in early intervention programme - required to learn a language they do not see as a target language for their child thereby losing any opportunity of catching second group, kids who will ultimately need the secondary input.

I was going to put these out there as issues. But they have gone beyond being issues for us. Thought I would share what has been happening in this context. Bearing in mind that we know for example about 20% of children routinely implanted in New South Wales will have auditory neuropathy.

An 'Open Alternatives' approach
Effectively - how did I misjudge that then?

One where we invite families into an early intervention programme - when implanted we recognise the need for access to strong auditory oral support mechanism being necessary - I will come back to this. An environment that tries to do these things. Not an environment requiring families to use sign communication but is open and inclusive of ones who do use it and actively model it. An environment where families can learn to sign - opportunities are freely available.

An environment - Sue mentioned it earlier that has extremely close collaboration with plantation professionals. The horse has bolted. We know in New South Wales close to 100% of profoundly Deaf children new found will be implanted. Not a bad thing. WE need to know that we have information available we can share with families of the likely outcomes of this and share this honestly and openly.

Need to be in a position to share that openly with families at every juncture with families. We provide good information post-Universal Newborn Hearing Screening on options in New South Wales .

They know about the existence of sign language etc. They need to know about outcomes. Against this backdrop families don't choose to pursue other than an auditory-oral option

When we present families with a single alternative of signed communication - if we present it without possibility of coalescing . . . we may be doing some children a disservice in that regard. We were at a conference where we heard about a significant number of children at boys' national institute - getting over humps in their spoken language development - a flexible approach is to be endorsed. If it means they are set up with acquisition of spoken as well as later sign language development - a good thing.

We need an open and flexible policy on communication.

I will leave questions after. What does it mean to be closely collaborating what the issues are - literature on auditory neuropathy - across 264 children seen through implant centre - 24% auditory neuropathy (with).

What Sydney Cochlear Implant Center is doing is progressively using electrically . . . rather than saying to families - no access to implantation - there is full counselling for families about implantation being possible. Counsel families into the two way together approach. They become automatic candidates. It is even more important for us to provide a back up.

You may know that there is a distinction between auditory dys-synchrony and neuropathies. As recently as 12 months ago we would be suggesting to families it was diminished local language function.

Children who are sensory peripherally deaf - speech perception scores of about 5.4

Children with auditory dys-synchrony - about 6.27

These are the sort of data I am talking about - in being open and honest with families. The need to be looking at this strategies. Families need to be able to select.

This notion of not a forced alternative - not forcing families but creating one where families can move in and out seems to be the best strategy.