Young deaf celebrity pops into NDCS office

I caused a minor frission of excitement in the office on Wednesday when Louis Kissaun, who had a leading role in the Channel 4 programme, Shameless, earlier in the year, came into the office. My colleagues hadn’t been so excited since the Helpline team bought some Krispy Kreme doughnuts.

What was he doing here? After a successful turn last year by Laura Bolter, we were thinking a few months back what young deaf person we could bring along to the party political conferences this year. And then Louis turned up on Shameless and the answer fell into our laps. We contacted his school and the rest is history.

It was great to meet Louis and to have him on board. It’s clear he’s going to do a great job. We know that MPs are going to be keen to meet with him to learn about his experiences growing up deaf and, of course, being on Shameless.

Our prep for the party conferences now starts in earnest – so look out for more details in coming months.

Deaf people’s access to telecoms

An early day motion (or a parliamentary petition to you and me) has been tabled in Westminster about deaf people’s access to the telephone, telecommunications, etc. The petition is aiming to raise awareness of a campaign by the Telecommunications Action Group (TAG) which brings together various deaf organisations and individuals.

My friend has blogged about this and I think it’s an important campaign. In my office, I have two special phones for which I can use Typetalk, the text relay service. But I hardly use either of them. I find Typetalk clunky, it makes conversations stilted and much longer and any hearing person I ever call often suggests continuing a conversation by email whenever I use it. Whilst it was breaking down barriers when I was growing up, now it just feels horribly outdated for the modern age. Deaf young people I meet often feel they same and often don’t use Typetalk at all. Instead, they favour texts and email.

But there are times when you just need to make a phone call. In America, they have captioned telephony where deaf people get live subtitles on their computer screen retelling what the hearing person is saying, to which they reply verbally. I’ve never used it but it would seem to make for a more natural conversation where the hearing person doesn’t even need to know the caller is deaf. It would be ideal for someone like me and oral deaf young people. Other deaf people might want to see more video relay services to allow for BSL conversations.

But, at the moment, that choice isn’t there. We seem to face a bureaucratic ping pong between the Government, Ofcom and telephone companies over who should be providing that choice or taking responsibility for making it happen. It’s really not good enough in the 21st century.

End of term report on acoustics campaign

Parliament has now broken up for summer. As a campaigns officer, my initial response to this news is always “Praise be!”. As much as I love MPs, the summer months give us a time to reflect, strategise and do some blue sky thinking. Or some grey sky thinking if you’re enjoying the same weather as I am.

One thing we’ll be reflecting on is our Sounds good? campaign on acoustics. Looking back, I think we can point to some solid campaign ‘wins’, including:

* A recognition by the Government that there is a problem over poor acoustics, to which action is needed.
* A commitment to publishing guidance on how to achieve good acoustics.
* An unofficial clamp down on the use of alternative performance standards from those set out in government guidance, where there is weak justification.
* A recommendation of acoustic testing in new ‘minimum standards’ for new schools published by the Government.
* A reference to acoustic testing in new draft contracts for use by local authorities for new secondary schools.
* A promise to review the acoustics in new school buildings in future “post-occupancy evaluations”.

We’ve done this backed up my widespread support. Nearly 80 MPs have signed a parliamentary petition on this, 45 came to a parliamentary event, 16 organisations have endorsed the campaign and over 400 members of the public have contacted their MP to call for action on this issue.

All of this is pretty good. If we were to end the campaign tomorrow, I would do so with my head held reasonably high as I rush to buy some Pringles to celebrate.

But there is one very important thing missing that we think is needed: a hard mandatory requirement for new schools to be tested for their acoustics. Nothing has been put forward that would be a watertight requirement and which would apply to all new schools (and not just secondary schools). Without this, we don’t think there is any real incentive to make acoustics a top priority. It would fall off the radar as soon as we stopped our campaign.

Baroness Wilkins, a strong NDCS supporter, has been pressing to get the law changed to introduce this new requirement and her amendment will get debated after the summer. We had a meeting with civil servants last week to discuss this and we have a commitment that they will be seriously thinking about this.

In the meantime, we’ll be thinking about ways in which we can keep the campaign on the top of people’s minds when Parliament comes back from summer… Any ideas?

Bling but dodgy new Naida hearing aids

A few months back, I got some funky new hearing aids. Called Phonak Naida, they basically take high frequency noises and turn them into something that those with a high frequency hearing loss can hear. More importantly, they come in a range of colours and I’m now able to abandon the boring old brown hearing aids and go for something a bit more colourful – black and silver. I sometimes now feel I’ve got more bling than Beyonce.

That’s not to say I haven’t had my teething problems. I had to take my first set back as the volume just collapsed within a few days. And then I started hearing strange internal feedback noises on the second set. But things now seem to have settled down and I’ve slowly been getting used to everything sounding different. And I do indeed seem to be picking up a wider band of noises.

However, the word on the street – or rather the NDCS Parent Place forum – is that these new hearing aids have been very volatile and unreliable, and that I’m not a one off. As a deaf, reasonably assertive, adult with a good audiology department, this is a pain but not a huge problem – I can just go back and get it fixed. I was also lucky enough to be allowed to keep my old hearing aid as a back up.

But we’re hearing that some deaf children are not so lucky – that they don’t have a back up and they’re not able to get a quick appointment at their audiology department. Also, younger deaf children may not necessarily realise there’s something wrong. It’s likely to have a major impact on children affected who will still be going to school, etc. So it’s a bit worrying, to say the least, that these technical problems seem to be sporadically popping up and it’s a problem that needs to be fixed asap.

NDCS is taking our concerns to the manufacturers, and calling for better quality control before new hearing aids are rolled out, and remaining vigilant. I guess the moral is that the bling gets you nowhere if you can’t hear Beyonce on the stereo.

In the meantime, have you come across any problems with the Phonak Naida hearing aids? How have they been resolved? Be good to hear from you if so.

Facing the cameras on subtitled cinema

Yesterday, I did something I’ve never done before – a media interview to camera. I have now recovered enough to recount my experiences.

It wasn’t actually that bad in the end. It was for Your Local Cinema.com website and I was asked a few questions about how the website had helped me as a deaf person. I explained how as a deaf child I felt left out and excluded when my hearing friends would go to see films and I couldn’t because there would be no subtitles. I almost slipped in an anecdote about how I didn’t have a clue what had happened to Bambi’s Mum when I went to see Bambi as a six year old. And I spoke about how Your Local Cinema.com is a fantastic resource.

Before the interview, I also got to practice my acting skills when I was asked to be filmed in the cinema pretending to enjoy a film. I will expect nothing less than an Oscar after doing my best faces for ‘highly amused’ and ‘overwhelmed by the drama’.

All in all, an interesting experience and I picked up some media techniques. Inevitably, I thought of lots of things to say afterwards that I should have said. I also managed to stumble over my words at one point when I said “myself and other deaf children”. But, hopefully, it will all be positive effort in helping to promote Your Local Cinema.com and it’s importance for deaf children. And hopefully NDCS too, after I cheekily wore my purple NDCS t-shirt during the interview.

A production company is putting together the material and will be sending it out to various programmes – so I’m not sure sure when it will be screened or if my piece will make the final cut – but will let you know.

What will the Conservatives do for disabled children?

While I was off in Scotland last week looking for the Loch Ness monster, David Cameron was busy setting out the Conservative party’s stall on policy towards disabled children.

It made for very interesting reading. Some interesting points jumped out at me:

1) Instead of subjecting parents to repetitive assessments by different professionals, a ‘crack team’ of professionals should visit families at the same time to assess what support is needed – in terms of social care, benefits, etc. The idea is that a one stop shop will reduce the bureacratic experience faced by many parents.

2) Decisions about what education support a disabled child should be given should be based on their needs. Yet too many parents feel that the local authority cares more about how much it’s going to cost them. At the moment, the same people who do the assessments are the same people who pay for it. In response, David Cameron has pledged to look into making assessments independent of decisions about funding.

3) The Conservatives seem to want to end the trend towards closing special schools ending – to ensure that disabled children aren’t put into mainstream provision where this is inappropriate and to give parents more choice.

The above chime with much of what NDCS is calling for as part of our Close the Gap campaign – and so is something to be welcomed. Personally, I’d like to hear more about the Conservatives will be closing the gap in attainment between deaf children and their hearing peers. Will there be more specialist support funded, for example?

We’ll be keeping an eye out for more policy announcements from the Conservatives to see what they might mean for deaf children. In the meantime, what are your thoughts on the above?

How to improve parental confidence in the education system?

That’s the question the Lamb Inquiry is currently looking at since last year after being asked by the Government to hold an inquiry on the special educational needs (SEN) system and why so many parents feel like they have to wage war to get support for their child.

We’ve been feeding in some informal thoughts but now NDCS is going to be producing a formal response which I’m currently working on. I spent much of today in a meeting with one of my colleagues to find out more about what parents of deaf children have fed back to us over the years. And one big issue that comes up time and time again is the process of how a child comes to get a statement, which sets out their entitlements to support at school, and how the SEN Code of Practice is followed in practice.

Some of the key points that seem to be emerging include:

* Lots of statements tend to be vague about a deaf child’s needs and what impact deafness has on their daily life. This makes it difficult to then specify what support is needed on a practical basis.

* Local authorities are often very reluctant to specify exactly what support the child needs / will get. For example, it might say that the child should have access to a communication support worker. But it won’t say how often or what skills the communication support worker should have. Some local authorities apparently have a policy of never being too specific on statements to avoid having to make commitments they made not be able to afford.

* Annual reviews of the statement sometimes seem to be just a talking shop. Parents are sometimes not provided with the necessary papers beforehand. Others find the meetings intimidating. Children’s views are not always sought. And perhaps worse, if a child’s objectives are not met, a few parents report that last year’s objectives are just copied and pasted into next year’s objectives, rather than using the annual review as an opportunity to problem solve why the objectives have not been met and work out what other support is needed.

One Family Officer said that in all her years of supporting parents on statements, she had “not come across one OK, let alone good, statement”.

What do you think? If you’re a parent of a deaf child, what have you been your experiences of the statementing system? What needs to be done to improve things? I’ll factor in any thoughts into the formal response.

Sweyne Park School: where you can hear yourself think

I’ve just got back from a fascinating visit to Sweyne Park school in Essex. It’s a school with a large unit for mostly profoundly deaf children and which has been at the centre of some ground-breaking research into acoustics in schools.

The history is that the local authority was finding that too many parents of deaf children were citing poor acoustics as a reason for demanding the local authority for their children to be educated elsewhere. So Sweyne Park took part in a scientific experiment where individual classrooms where either given superior acoustics, or just met the government’s standards or were left untreated as a control group, with a view to improving acoustics over the longer-term.

While we wait for the research to be published, we decided to go and see and hear the classrooms for ourselves. It was a revelation. The classroom with acoustics that go beyond what the Government requires was incredibly quiet and calm – even though there were several one to one discussions going on in the classroom. It was as if background noise and babble was being sucked out of the room. I could almost literally hear myself think.

The classroom that just meets government standards was just about OK but the children’s voices were more audibly lingering around the classroom.

The ‘control’ classroom was very noisy. When I entered, I felt like I was enveloped by a wave of sound. Group discussions were going on and the children were talking louder and louder over each other to be heard. A communication support worker told me he found it more difficult to support deaf children in such classrooms.

The teachers had nothing but positive feedback about the new classrooms – that they didn’t have to shout anymore to strain their voices and that it was easier to manage the classroom. It was strange for me, but I personally felt myself tensing up just going into the noisy classroom whilst I felt quite relaxed and calm in the first classroom.

Our campaign position up to now has been that focused on getting the Government to make sure that all new classrooms met the existing standards. Having visited this school, I’m now wondering if we need to start arguing more for the standards to be upwardly revised…

New strategy paper on education: what does it mean for deaf children?

The Department for Children, Schools and Families love to strategise. If I had a Krispy Kreme doughnut for every strategy paper that’s been published since I started this job, I would probably now be auditioning for the role of Jabba the Hutt in the next Star Wars film.

Their latest strategy paper is called: Your child, your schools, our future: building a 21st century school system. It’s a white paper, meaning that it’s a statement of intention to make lots of new laws in this area, probably later this year.

I read all through this morning and it was quite interesting. Critics will say it’s a desperate last gasp of a Government that’s running out of ideas, but I thought there was lots of sensible, useful stuff in it and a handful of references to the needs of children with special educational needs.

For example, pupils will now have a legal ‘guarantee‘ of what they will get out of school. It includes the right to additional support if children are falling behind. Assuming people are aware of it and that the guarantee has real legal teeth, it could be a useful lever to empower deaf children and their families to get the support they need.

There’s also a proposal that local authorities should survey parents to make sure they’re happy with the choice of schools in their area. Again, could be a powerful way of empowering parents of deaf children where suitable provision locally for deaf kids is not great.

A few concerns though. The white paper talks a lot of encouraging schools to work together and collaborate more to meet each other’s needs, with less centralised support from Westminster. Schools will also have more control over their own funding. This is fine – but we will need to make sure that schools don’t forget about children with low incidence needs, such as deaf children, and still make sure these children get the support they need. The white paper itself acknowledges there will still be a need for some centralised support services. We’ll be reminding them of this when it comes to sensory support services. We’ll also be reminding them of the ongoing need for action to close the gap in attainment for deaf children.

As always, the devil will be in the detail. And I need to find it, in true “Where’s Wally?” style.

What did you think? Is it good news for deaf children or do you think more needs to be done?