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BBC Radio 4 In Touch
24 June 2008

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Factsheet

DEAFBLIND AWARENESS
Guests: Lucy Drescher Campaigns Officer at Sense; Chris Waterman, Director of the Association of Directors of Children’s Services

This week is deafblind awareness week and Sense, the deafblind charity, have released a survey of ninety one local authorities which finds that 66% of deafblind children have not been identified by their local authorities.

Identification is the crucial first step in providing appropriate support.

In Touch asked whether these claims are alarmist or helpful in getting the right provision for the often complex needs of deafblind children.

CONTACTS

Sense
101 Pentonville Road
London
N1 9LG

Tel: 0845 127 0060
Text: 0845 127 0062
Fax: 0845 127 0061
E-mail: info@sense.org.uk
www.sense.org.uk
Sense is the UK's largest organisation for children and adults who are deafblind or have associated disabilities.


BEAUTY SPOTS

The programme report from Stoke Bruerne Lock in Northamptonshire, which is one of two such areas to be made accessible to blind and partially sighted visitors by a partnership between British Waterways, The Fairfield Trust and local visually impaired consultants.

Stoke Bruerne is situated on the Grand Union Canal, which runs from Brentford in West London all the way to Birmingham.

Visually impaired visitors can now independently walk along the towpath, go for picnics or gongoozle (the canal equivalent of trainspotting).



SOUND ARTIST

Johny Cassidy explored the world of sound art for the programme.


GENERAL CONTACTS

RNIB
105 Judd Street
London
WC1H 9NE
Helpline: 0845 766 9999
Tel: 0207 388 1266 (switchboard/overseas callers)
Web: www.rnib.org.uk
The RNIB provides information, support and advice for anyone with a serious sight problem. They not only provide Braille, Talking Books and computer training, but imaginative and practical solutions to everyday challenges. The RNIB campaigns to change society's attitudes, actions and assumptions, so that people with sight problems can enjoy the same rights, freedoms and responsibilities as fully sighted people. They also fund pioneering research into preventing and treating eye disease and promote eye health by running public health awareness campaigns.


HENSHAWS SOCIETY FOR BLIND PEOPLE (HSBP)
John Derby House
88-92 Talbot Road
Old Trafford
Manchester
M16 0GS
Tel: 0161 872 1234
Email: info@hsbp.co.uk
Web: www.henshaws.org.uk
Henshaws provides a wide range of services for people who have sight difficulties. They aim to enable visually impaired people of all ages to maximise their independence and enjoy a high quality of life. They have centres in: Harrogate, Knaresborough, Liverpool, Llandudno, Manchester, Newcastle upon Tyne, Salford, Southport and Trafford.


THE GUIDE DOGS FOR THE BLIND ASSOCIATION (GDBA)
Burghfield Common
Reading
RG7 3YG
Tel: 0118 983 5555
Email: guidedogs@guidedogs.org.uk
Web: www.guidedogs.org.uk
The GDBA’s mission is to provide guide dogs, mobility and other rehabilitation services that meet the needs of blind and partially sighted people.


ACTION FOR BLIND PEOPLE
14-16 Verney Road
London
SE16 3DZ
Tel: 0800 915 4666 (info & advice)
Web: www.afbp.org
Registered charity with national cover that provides practical support in the areas of housing, holidays, information, employment and training, cash grants and welfare rights for blind and partially-sighted people. Leaflets and booklets are available.


NATIONAL LEAGUE OF THE BLIND AND DISABLED
Central Office
Swinton House
324 Grays Inn Road
London
WC1X 8DD
Tel: 020 7837 6103
Textphone: 020 7837 6103
National League of the Blind and Disabled is a registered trade union and is involved in all issues regarding the employment of blind and disabled people in the UK.


NATIONAL LIBRARY FOR THE BLIND (NLB)
RNIB Customer Services on 0845 762 6843
Email: cservices@rnib.org.uk
Web: www.nlb-online.org
The NLB is a registered charity which helps visually impaired people throughout the country continue to enjoy the same access to the world of reading as people who are fully sighted.

Trustees from the Royal National Institute of the Blind (RNIB) and the National Library for the Blind (NLB) have agreed to merge the library services of both charities as of 1 January 2007, creating the new RNIB National Library Service.


EQUALITY AND HUMAN RIGHTS COMMISSION DISABILITY HELPLINE (England)
FREEPOST MID02164
Stratford upon Avon
CV37 9BR
Tel: 08457 622 633
Textphone: 08457 622 644
Fax: 08457 778 878
Mon, Tue, Thu, Fri 9:00 am-5:00 pm; Wed 8:00 am-8:00 pm.
Enquiry: englandhelpline2@equalityhumanrights.com
www.equalityhumanrights.com


Equality and Human Rights Commission Helpline Wales
Freepost RRLR-UEYB-UYZL
1st Floor
3 Callaghan Square
Cardiff
CF10 5BT
0845 604 8810 - Wales main number
0845 604 8820 - Wales textphone
0845 604 8830 - Wales fax

9:00 am-5:00 pm, Monday to Friday (an out-of-hours service will start running soon)

Enquiry: waleshelpline@equalityhumanrights.com
www.equalityhumanrights.com


Equality and Human Rights Commission Helpline Scotland
Freepost RRLL-GYLB-UJTA
The Optima Building
58 Robertson Street
Glasgow
G2 8DU
0845 604 5510 - Scotland Main
0845 604 5520 - Scotland Textphone
0845 604 5530 - Scotland – Fax

9:00 am-5:00 pm, Monday to Friday (an out-of-hours service will start running soon)

Enquiry: scotlandhelpline@equalityhumanrights.com
www.equalityhumanrights.com


DISABLED LIVING FOUNDATION
380-384 Harrow Road
London
W9 2HU
Tel: 0845 130 9177
Web: www.dlf.org.uk
The Disabled Living Foundation provide information and advice on disability equipment.





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Transcript

IN TOUCH

TX: 24.06.08 2040-2100


PRESENTER: MANI DJAZMI

PRODUCER: KATHLEEN GRIFFIN



Djazmi
Hello. This week we're Gongoozling.

Clip
It's lovely and quiet. If you get up towards the winding hole you'll get a lot more of the birds - more hens and coots up there - and it's just beautiful being able to sit down on a bench listening to the wind in the trees, listening to the birds and just getting away from everything.

Djazmi
Find out what Gongoozling means later, if you don't know already that is.

First though, this week is Deafblind Awareness week and the Deafblind charity Sense has today released a survey of 91 local authorities claiming that 66% of deafblind children haven't been identified by their local authorities. The first crucial step in providing appropriate support. But are these claims alarmist or helpful in getting the right provision for the often complex needs of deafblind children? To discuss these issues I'm joined by Lucy Drescher, who's the campaigns officer at Sense.

So what do you mean by 66% of children, that's a very high figure Lucy?

Drescher
It is. We base that figure on the number of children local authorities told us they'd identified and then compared it with the number we would expect, which was based on an estimation of 31 per 100,000 of the population.

Djazmi
So where are these children, I mean they're invisible, what are they doing?

Drescher
Some of them are in other services, they may be in the learning disability service or the blind or deaf service, so they could be on, let's say, another list. Or what often happens is that they get an education service and so the local authority thinks they've done their job and they don't do anything for them outside school. We've often been told that at that point they've been passed across to Sense - oh Sense could do something now because that's for outside school - but we feel it's very important for things to be set up outside school as well as in education.

Djazmi
Well also joining me to discuss this is Chris Waterman, who's the executive director of the Association of Directors of Children's Services, that's the body launched last year to provide a national voice as a champion for children with local and central government and the public. So Chris, what do you make of this figure?

Waterman
Well I think frankly it is alarmist and a press release that starts "Two thirds of deafblind children are invisible to local authorities ..." is unhelpful. Effectively children's services authorities are responsible for education and children's social services and for working with health. And what local authorities are doing is providing an integrated range of services but not necessarily labelling children deafblind and I think that is one of the issues to do with the methodology of the questionnaire.

Djazmi
So do you think that the 66% of children mentioned here are being looked after adequately?

Waterman
Well I'm sure they're not getting all the services they might in a perfect world but all of these children will be well known to the children's services authority and with those new authorities they will be getting a better and more integrated service across children's social services and education.

Djazmi
Lucy Drescher from Sense, I mean the figure isn't what you might call watertight is it, I mean - statistics are what you make of them, so do you think Chris has a point, is it more alarmist than alarming?

Drescher
No I don't think he has a point, I don't think it's alarmist, I think it's based on what local authorities have told us and we do believe it's very important that children are identified as deafblind, so that they get specialist services and so that also children - parents don't have to fight for everything. So often parents tell us that anything they have - any services they receive - are all based on what they've had to fight for, that shouldn't happen.

Djazmi
I mean how much legal muscle is there here, I mean how much of an obligation is for local authorities to look after the deafblind children in their areas?

Drescher
The deafblind guidance was introduced in 2001 and it's statutory guidance, so local authorities do have an obligation to implement it. And now Ofsted, who do the inspecting of children's services, can inspect whether the deafblind guidance is being implemented.

Djazmi
Well you mentioned children whose parents have had to fight for them, we're going to hear from one now, she's called Jessica, she's eight years old and she's deafblind, she goes to a deafblind school, she was also diagnosed with a complex genetic condition which left her with multiple problems, including epilepsy and difficulties with balance. Our reporter Felicity Finch went to meet Jessica and her parents - Simon and Flo - who approached their local authority seeking help for Jessica. And Felicity found them having fun.

Actuality
Parents chatting to Jessica.

Flo
I would have hoped that somebody would have referred us to the local authority because obviously they wouldn't have known of us unless somebody in the medical field referred Jessica. So we contacted the local authority. Somebody from social care - somebody from the deafblind team - came along. We're very, very lucky that our local authority has a deafblind team because most local authorities don't.

Finch
What kind of support does Jessica get in school now?

Flo
She has got quite a full package of support. She has a full time one-to-one worker, she receives a service from a local authority visual impairment teacher, she has multi-sensory impairment teacher, she receives speech and language therapy and physiotherapy at school. And the people who work with her have assessed and ensured that she's provided with equipment as well, such as a magnalink, so she's getting quite a good support package.

Simon
Although there's a very good package in place at the school at the moment it's fair to say that we have had to struggle to get that package in place. We had always had the MSI - multi-sensory impaired - teacher but we had very little or no input from the visual-impaired teacher. VI input is very important given Jessica's visual problems and since we have had a VI teacher in the last term and a half it's enabled Jessica to progress.

Actuality
Jessica laughing

Flo
I think that it's been so evident in this last year really the difference that it makes to Jessica, the support. For example, her writing has really improved because the occupational therapy has been working quite significantly with her. She's now beginning to recognise words and learn to spell. She's achieving much better.

Simon
On each level she's pleasantly surprised us, whether it's by her suddenly starting to run, which was very scary, bigger or steeper the slide or the bigger the climbing frame the better it is.

Finch
So what would your message be to local authorities?

Flo
The impact of deafblindness is actually not deafness plus blindness, it's deafness times blindness. That complexity sometimes can be quite baffling for the local authorities. By and large no child's needs are being seen for the first time, by and large local authorities have seen those needs with other children, parents should not have to go through arguing the same arguments or fighting the same battles that parents before them have fought for the same provisions.

Actuality
Jessica playing

Djazmi
Felicity Finch reporting on a very lively Jessica, who's making good progress.

But Lucy Drescher from Sense, I mean how much of that progress is down to the fact that she's well provided for in a special school, what happens when she's out of school?

Finch
I think it's incredibly important that she receives specialist services outside school, as well as in school, absolutely because every child will go to various activities outside school, whether it be football or scouts or something like that and also they get an opportunity not just to go to an activity but also to be a bit independent of their family and make friends separate to their family. And for deafblind children that's a real struggle without some support. And it shouldn't be that they have to go to any activities always with a family member, they should be able to go with a support worker who can enable them to take part and understand what's going on in an activity.

Djazmi
Chris Waterman, the crux of the problem seems to be that Sense don't think that enough deafblind children are being identified, but to what extent is one person's identification another's labelling?

Waterman
Well what local authorities are keen to do is to identify the appropriate provision for children to achieve good outcomes for each individual child. I appreciate where Sense is coming from because they are the charity for deafblind but local authorities - I mean I worked in special needs 30 years ago when the old special needs categories were abolished and we stopped labelling children and started to talk about their needs. And I think that we wouldn't want to go back to labelling children, what we want to do is offer services that meet all of their needs. And as we heard, with regard to Jessica, she's not only deafblind she has a range of other complex problems. So to describe her just as deafblind would not be accurate either.

Djazmi
So I mean how can we go forward both of you? I mean Lucy, what would you like to happen?

Drescher
We would particularly like local authorities to identify a senior manager within children's services who is responsible for making the deafblind guidance work for children. And that isn't the case at the moment. Because, as Chris says, things have changed and there have been changes over the last few years, there hasn't been a senior manager identified who's responsible for making it work for deafblind children and we think that can make all the difference.

Djazmi
Chris, do you agree?

Waterman
Well we'll happily talk to Sense about this but certainly every local authority has a senior manager responsible for children with complex special needs, they may not have deafblind in their title but there is certainly a senior officer who takes a particular interest in these children.

Djazmi
So what would you like to see happen, how can we improve the situation?

Waterman
Well we're happy to engage in dialogue with Sense and indeed we advised them on the survey when they approached us last autumn. So ADCS is keen to get into dialogue and it's in all of our interests to improve the outcomes for the little girl we've just heard about and all of her fellows with special needs.

Djazmi
Chris Waterman and Lucy Drescher, thanks very much for giving us your time. And if you have any thoughts on the matter do contact us, details to come at the end of the programme.

Now how accessible is your local beauty spot? Well if it's Stoke Bruerne Lock in Northamptonshire then pretty accessible. It's situated on the Grand Union Canal, which runs between Brentford in West London all the way to Birmingham and it's one of two such areas to be made accessible to blind and partially-sighted visitors by a partnership between British Waterways, the Fairfield Trust and local visually-impaired consultants. They've come up with a tactile map of the area and a tape providing audio description. It means that visually-impaired visitors can now independently walk along the tow path, go for picnics or Gongoozle to their heart's content. And if In Touch had a word of the week rest assured Gongoozle would be it. It's the canal equivalent of train spotting, if you didn't know already.

Well I went along to Stoke Bruerne last week where I tried out the facilities for myself.

Well I'm in the museum shop and in front of me is a tactile map of this area of the canal and it's about three feet long and about a foot wide and it's very nice to feel actually, there are lots of different textures and different shapes as well. I'm with Paula Sucht, who's from the Buckinghamshire Association for the Blind and who was involved with the consultation which took place when they wanted to make information about this part of the canal accessible. So just give us a brief explanation of how this map works. Where is the actual canal in this - how is that represented?

Sucht
It's a dip that runs right down the centre and it's got a texture, so I guess they've tried to replicate water and the tow path itself is quite smooth, along the side. And all along the way there are little Braille symbols with say just one letter or two letters - it might say a CP for car park and then there's steps up from the car park. It's quite a nice representation.

Djazmi
Yeah it's just like a model isn't it, because the lock ...

Sucht
Yeah it's more of a model than a map to be honest, I would say.

Djazmi
Because the lock is represented by a raised piece which is I suppose a bridge is it?

Sucht
Yeah you can walk over that.

Djazmi
And then beneath that there's the sort of tunnel where the lock is. We're also joined by Caroline Skinner who is a guide dog user and I understand earlier on you and Paula were deciphering the map together?

Skinner
I was up the Braille key end and Paula was feeling down the map and she was saying, you know, what's this C and then I could check up there and say oh that's such and such. So it was nice being able to work together as two visually-impaired people, instead of having to drag in a sighted person. And also either of us could see not just what was the area that we were going to walk along, on the tow path this side, but you could actually find out what was the other side of the canal, by feeling over the map and you could see where the sort of building areas were and where the grassy areas were and things like that.

Audio description
With your back to the cafe and museum turn left and follow the tow path for about 70 paces passing some buildings on your left. The tow path here is wide but can often be very busy. Although the surface is firm it can be uneven in places.

Djazmi
Well we've come out on to the bank of the canal and I'm with Caroline and Veronica Dry, who like Paula is from the Buckinghamshire Association for the Blind. Veronica, you're a local, so just give us an idea of how popular this spot is for locals to come and just sort of relax and wander around.

Dry
Oh it's very popular, it's not very far from big centres like Northampton, Milton Keynes and Bedford. People like coming here, it's a great place for families on a nice sunny day, very busy at the weekends, it's a tourist area too and of course all the people coming through on their holidays on their canal boats.

Skinner
I would not have dared come here as an independent individual, I would have been latched on to somebody. I would have been terrified of falling in the water, I wouldn't have known where I was in relation to other things. So it's things like that that the tactile map and the audio trail have actually helped out.

Djazmi
So even with your guide dog you didn't really fancy coming along here?

Skinner
No because a guide dog is there to go where you tell it and if you have no idea of what you're actually heading for then it's very difficult to give the dog the right instructions. Yes in theory it should make sure you don't fall in the water but the dog could be just as confused as you if it's not getting definite instructions as to where it's going.

Dry
And we've got a moorhen walking along in the path - on the path just in front of us.

Djazmi
Oh right.

Dry
I think it might be a baby one, oh no perhaps it's a mother. Running off now. It's just jumped in.

Simpson
I'm Annette Simpson and I'm the education and interpretation manager for British Waterways. We've worked at two sites during this project. So we've worked her Stoke Bruerne and Hatton Locks, which is near Warwick but we've just been fortunate again to attract some more funding and we're going to start another site which is Fradley Junction, which is near Coventry. So we're hopefully going to continue this work at other sites but these are the first two sites we've worked at. We've been working for about four years on this project and involving the groups in all aspects of working with us, you know coming out to site and having days with interpretative planners and consultants and then working with designers and the people who made the tactile maps for us. So that's why it's taken so long.

Djazmi
And what kind of feedback have you had from people who've visited here?

Simpson
Well the people that we worked with here and we've worked with five different groups here at Stoke Bruerne and at Hatton, they raised a lot of other interesting points to do with access and now the audio guide and the tactile maps are here and people discover them more we're hoping for some positive feedback and we can use those comments as well at other sites.

Audio description
Beyond the lock in front of you is a weighing cradle used for weighing boats and their cargo prior to paying a toll. Hence the expression: paying your way.

Dry
One of the things we've learnt along the way is wherever we go is always ask for an audio guide, if we create the demand eventually the message gets through and it's quite surprising places that you go and you ask and they say oh yes we have got one, I'll go and get it out the cupboard, you're the first person that's asked for two weeks.

Skinner
I like getting away from the busy end, which is the cafe and the shop area at the beginning of the trail, and getting up towards the tunnel and it's lovely and quiet, if you get up towards the winding hole you'll get a lot more of the birds, moorhens and coots up there and it's just beautiful being able to sit down on a bench listening to the wind in the trees, listening to the birds, and just getting away from everything.

Djazmi
Caroline Skinner, enjoying the tranquillity of Stoke Bruerne Lock.

Well that's all for this week. As ever we welcome your comments on anything you've heard or would like to hear in the programme. Our action line number is 0800 044 044. And you can also e-mail us via the In Touch website where you'll find a podcast of the programme from tomorrow morning. Do join Peter next week but in the meantime until we meet again from me Mani Djazmi, my producer Kathleen Griffin and the team, bye bye.



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