Party conferences: NDCS’s plans to stalk MPs

The political party conferences are coming up in September. There are where all the MPs and members for each party get together. Depending on the political mood in the party, MPs will be talking about how wonderful it is that the general public seem to like them or wondering what poison to put in their leader’s tea. They have lots of meetings and speeches and debates and pass motions and talk about policy.

The party conferences tend to be in seaside towns, giving MPs the opportunity to stock up on their ‘Kiss-me-quick’ hats. But this year, only the Liberal Democrats are going for a seaside feel by hosting their conference in Bournemouth. Labour are heading to Manchester and the Conservatives are in Birmingham.

As all the MPs for each party are all in one place, it is the best opportunity any campaigns officer gets to lobby lots of people at once. So the party conferences are also full of people like me who go in the aim of persuading key decision makers to support their campaigns. It sometimes rather feels like stalking. Last year, I took this to a new level by going to three meetings where one particular MP was speaking before finally nabbing him as he was leaving the third meeting and asking him to table a motion in Parliament about deaf children and education. I’m pleased to say that my stalking paid off.

And we’ll be doing the same this year. Right now, I’m currently sorting out all the arrangements for this – arranging meetings with MPs, looking up the list of seminars that key MPs will be speaking at, deciding what our key messages will be, sorting out travel/hotel stuff and so on. To complicate things, I also have to sort out the arrangements for my interpreter, who will be accompanying me this year to help with communication support, as well. It makes me long for the gift of time. Or a PA. Or some chocolate biscuits.

To make things a bit different this year, we are taking along a young deaf person with us to one of the party conferences – she is called Laura and you may have been watching this space for her after I blogged about meeting her quite recently in Newbury. The idea is that we give MPs the opportunity to hear from a young deaf person directly about some of the things that matter to them. We’ll see how it goes this time and try and do it all the time in the future. I’m pretty confident that Laura will do a great job and am looking forward to seeing what she thinks of it all.

Look out for more blogging updates on the party conferences and I’ll let you know how it all goes.

Something NICE comes this way…

No, sadly, it’s not a box of chocolate digestives but a report into cochlear implants from the National Institute for Clinical Excellence (or NICE – hence the appalling pun in the title). NICE is a Government body which decides what treatments the NHS can provide in England and Wales. And cochlear implants are devices implanted into the ear which give profoundly deaf children a sensation of hearing. Cochlear implants are only really given to children who are severely or profoundly deaf and who receive little or no benefit from conventional hearing aids. For the past two years or so, NICE have been looking into whether cochlear implants should be given to profoundly deaf children as standard where parents / children have made the choice for this option.

And my spies* tell me that NICE are due to publish their conclusions imminently…

To bring you up to speed, NICE have published a few consultation documents. If you have the appetite, you can read these and the rest of the history on the NICE website. One of the issues is what they will say about unilateral implants (in one ear) and bilateral implants (in both ears). In their first consultation document, they seemed to be moving in favour of unilateral AND bilateral implants. But then in the second, NICE went cool on bilateral implants. But then after that they mentioned they were looking into more detail in the cost effectiveness of second implants. So the final document may say something completely different.

Currently, some deaf children are having to wait extremely long periods for a unilateral cochlear implant – so a positive recommendation on this would help address this. And few deaf children are given bilateral cochlear implants, and many parents out there feel strongly that their child should. There is some emerging evidence that bilateral cochlear implants can help profoundly deaf children to work out where noise is coming from and to understand speech in noisy classrooms. Given how noisy mainstream classrooms can be, this suggests that bilateral cochlear implants might help deaf children learn.

Cochlear implants remain fairly controversial. I’ve heard people describe them as an attack on the human rights of children, as an attempt by doctors to impose a medical view of disability on deaf children and getting deaf children to fit in with the hearing world (rather than accepting and welcoming their deafness) and even as a means of killing deaf culture.

I actually used to be fairly hostile to cochlear implants – back in the days when I was still reading the Communist Manifesto probably – and still recognise some of these points. I also get very uncomfortable when cochlear implants are described as a ‘cure’ for deafness. They’re not – children with cochlear implants are still deaf and still have communication needs. These needs still need to be met. I sometimes wonder how much money is spent on meeting these needs for all deaf children than spent on these ‘miracle cures’ for deaf children and, unfortunately, I suspect it’s not very much.

But over time, having met more deaf children and adults with implants, I’ve become a bit more flexible in my views. I see cochlear implants as providing deaf people with options – it helps deaf children to participate and communicate with their hearing peers in what is a hearing world. And cochlear implants don’t stop deaf children from being deaf and from learning or continuing to communicate in sign language. Research from NDCS and the Ear Foundation suggests many deaf children with implants are flexible with their communication approach and prefer this flexibility. Ultimately, I believe that options empower deaf children.

But what do you think? And importantly, what will NICE think? Watch this space to find out.

* By spies, I of course mean the NICE website which says a final report is due in September…

What does Cath the deaf Cat think?

I’ve been meaning for a while to do a blog about those Leonard Cheshire adverts made by the Creature Comforts people that challenge people to change the way they think about disability – especially after a new advert appeared featuring a deaf cat that goes by the name of Cath.

And then my friend Tina beat me to it. Pesky Tina. Anyhow, rather than repeat it all, I invite you to take a look at her posting on this which is well-worth a read and sums up a lot of the frustrations that deaf children feel.

Take a look at the advert featuring the deaf cat here (Cath appears in the same advert as the shrimp). It links to what I said in my last blog posting – of teachers talking in a really patronising way. I think it’s a great campaign that makes a serious point in a fun and creative way. Hopefully, it will go someway to addressing the attitudes and preconceptions that many people have about deaf children and adults.

Incidentally, Tina has an impossibly cute hearing dog for deaf people called Smudge. Smudge has his own blog – Just Smudge. Despite being a dog, Just Smudge still manages to get my blog hits than I do! Maybe if I had cute curly locks all over my body too, things would be different…

WHEN…TEACH…ERS… TALK… REALLY… SLOWWWWWWLY…

I go where the work takes me. It would be nice if these places were Barcelona or Florence but as I’m the NDCS campaigns officer, yesterday, work took me to Newbury in Berkshire.

Anyhow, the reason I was in Newbury was to meet a young deaf person called Laura (who actually lives in Dorset – a long story). As part of our quest to become a more child-centred organisation, Laura has been recruited to help us with our campaigns work in the future (which you’ll be hearing more about in future blogs) so I went to learn more about her. Immediately, I could see that she would make an excellent role model and spokesperson for deaf children – very intelligent and articulate and very much demonstrates the art of the possible. That deaf children can achieve as well as their hearing peers and prosper if they are given the right support.

I learnt a bit more about her background and we talked for a bit about things that gone less well. She reminded me about something I used to get annoyed about – teachers not being deaf aware. Like me, Laura has had some excellent teachers who’ve gone out of their way to support her. But, also like me, Laura has also had some really patronising teachers who don’t have a clue.

Like the teacher…who…talks…really…slowly…like…you…are…a…five…year…old…or…a…complete dumbo…

Frankly, I would be mortified when anyone spoke like this to me when I was growing up. Now if anyone tries it, I tell them to stop being so silly and to speak normally. I may even slap them if I think I can get away with it. But for a child, it’s not always easy to challenge your teacher and tell them that it’s not necessary to talk so slowly or explain that it really doesn’t help. I imagine that many deaf children suffer the embarassment of being spoken to so patronisingly in the classroom in front of their peers in silence.

Then you have the teachers who just haven’t had the deaf awareness training or they’ve forgotten it. They forget that deaf children lipread and that you need to face them if you’re speaking. They put on DVDs that don’t have subtitles. They tell deaf children off for being lazy when the child is exhausted from having to lipread all day and is struggling to concentate.

This is not an attack on teachers (though I do think, like in any industry, there are some rubbish ones out there and I don’t think anyone should shy away from that). Our campaign report on education calls for improved teacher training so that all teachers working with deaf children have a good understanding of how to work with deaf children effectively. We also call for whole-school training whenever a deaf child enrols at a new school, everyone in the school gets refresher training. I’d also personally like to see deaf children empowered and be invited to give their feedback on teachers and whether they are suitably deaf aware. I don’t get the impression this really happens very much at the moment.

Anyhow, look out for more of Laura soon!

CAMHS: Are deaf children being ignored?

Considering the figures out there that suggest that 40% of deaf children experience mental health problems, compared to 25% of their hearing peers, you would think that an interim report by an independent review team asked by the Government to look into Child and Adolescent Mental Health Services (CAMHS) might mention deaf children.

Nope. The interim report, published at the end of July, makes for an interesting reading and I’m sure it will improve services to children with mental health problems. And to be fair, the team have a huge range of issues to talk about and report does mention the difficulties faced by “vulnerable” children. But vulnerable children covers a pretty wide and diverse bunch of children – all of which will have quite specific needs.

I talked about issues relating to emotional well-being and deaf children in a previous blog. As well as being more likely to experience mental health problems, deaf children are also more likely to experience difficulty in accessing services due to communication difficulties and a lack of specialist knowledge and deaf awareness by staff. Unless you shine a spotlight on this, it’s unlikely that people who will be implementing the findings of the final CAMHS report will do anything about this.

So we’re disappointed. But all is not lost. The review is still collating and reading evidence (including our response to their call for evidence)and we’ve written to the review team to set out our initial concerns.

The review team has asked for feedback on their interim report so if you feel the same as us, you can also contact them at camhs.review@dcsf.gsi.gov.uk to ask how they’re going to consider the needs of deaf children.

The final report is due to be published in October this year and we’ll keep you informed of developments.

Administrating in August

With the politicians on holiday, August is typically a month for boring admin stuff for campaigners. Like filing all those bits of paper on your desk. Sorting out your emails. Monitoring the impact of what we’ve been up to. And washing the empty mug on your desk before it develops so much fungi, it becomes a sentient life form and walks to the dishwasher by itself.

One big admin thing that I’m going to be working on in the coming weeks is working on the bit of our website where we talk about our campaigns. To be honest, I’ve never been entirely happy with it and whilst I’ve tinkered around with it in the past year, I think it still needs a lot more work. A total revamp, even. Here’s what it looks like at the moment:

5 things we’re planning to do or look at:

1) At the moment, there is very little mention of our campaign work in Scotland, Wales or Northern Ireland. Anyone would think that Westminster was the centre of the universe! So we’re planning to introduce sections for each of the four nations of the UK.

2) Update it. A lot of the text is out of date and doesn’t really reflect what we’re working on at the moment. I’m tempted to develop some kind of sentry gun feature whereby I cannot leave my desk for the weekend unless the campaigns text is freshly updated every week. In the meantime, a big sweeping update is probably needed to bring everyone up to speed.

3) Taking a look at the language. Do we explain our campaigns in a simple and straightforward way as possible? Do we signpost people to more information if they want it? We don’t want to insult the intelligence of our readers, but we know that many of them are busy people. So how can we strike a balance?

4) Getting people to take action! We want people to feel energised and motivated to change the world for deaf children. Do we make it as simple as possible for people to take action? Do we explain sufficiently why it’s so important they do?

5) Joining the 21st century. We’ve now got a blog but what about facebook, myspace, bebo and all those other modern things? Do we need to get with the programme? How can we take our campaigns to people and entice them to visit our campaigns site and get involved?

What do you think? Take a look at the campaigns section and let us know if you have any feedback or comments for improvements. They will all be very much appreciated.

Mentioning the phonics after all…

When I recently wrote about phonics, I got an interesting response from a guy who said:

Recent research in the United Kingdom showed that tests of the ability to distinguish isolated phonemes and syllables did not relate to tests of the ability to discriminate normal, everyday speech in any meaningful way. So why consider phonics for deaf children? I think if you are careful in the way you apply phonics, it can be helpful.

To those that don’t know, phonics is basically a way of learning literacy through listening to sounds (it’s a bit more complicated than that, but that’s the general gist of it). And just to prove that we do read our comments and take then on board, I thought I would respond to this and set out my own thoughts on the prickly issue of phonics.

First of all, intuitively, it is difficult to see how can a child who is profoundly deaf, who has little or no useful hearing, can learn literacy through a method that involves listening. Even if it was possible, it must be incredibly tiring and difficult to do so. I am most happy to be contradicted by research out there and would definitely like to take a closer look at the research mentioned so that we can use it to develop our thinking.

This is not to say that it can never be useful for deaf children. Many deaf children have some useful hearing and so it can useful for those. But it is difficult to see how it can be useful for all. And for those for might be useful, as the above comment says, it still needs to be applied in a careful way.

Which is why I objected to phonics being presented as the end-all solution to fix the problem entirely in the answers coming out from Government. In the context of parliamentary questions about deaf children, it is slightly baffling that phonics continues to be mentioned as the ’solution’ without a recognition or fuller acknowledgement of the subtleties behind it. We’re also concerned that teachers are not always aware of these subtleties.

My esteemed colleagues are currently developing some thoughts on this which will aim to look at 3 questions:

1) Is phonics appropriate to all deaf children?

2) If is not appropriate for some deaf children, how can these children be taught literacy?

3) For deaf children for which phonics is appropriate, does it need to be taught in a slightly different way to ensure it is accessible?

This may seem like a slightly airy-fairy debate. But I think it’s definitely one worth having – especially when you look at figures given to us by the Department for Children, Schools and Families (which are set out in the annex of our Must do better! campaign report), deaf children are 300% more likely to leave primary school without a basic understanding of literacy.

300%!! Something is going very wrong when it comes to deaf children’s literacy and so we really need to get to the bottom of how deaf children can learn literacy and the different approaches that should be used.

So, as before, please feed in your comments and enter the debate if you’ve got any thoughts on this issue. We definitely read them and we definitely appreciate them.