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TX: 01.06.06 - Disability Tsar

PRESENTERS: LIZ BARCLAY AND WINIFRED ROBINSON
THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

BARCLAY
Forty-three-year-old Nicola Smith from West Sussex is a former member of the National Assembly at the mental health charity MENCAP. For 10 years she's been a powerful voice in the campaign for mental health patients to be allowed to make their own life choices. Self advocacy - as the jargon has it. Now Nicola is the new national clinical director for learning disabilities, she's the first person with a learning disability to become a so-called government tsar. But her role is a part-time job share. Carolyn Atkinson spoke to Nicola shortly after the appointment.

SMITH
I'm very proud to be honoured to be the first one to be appointed, yes. I have had experience of it and so I know what it feels like to have a learning disability.

ATKINSON
And are you able to just tell us a little bit about your learning disability?

SMITH
Not really. I just do a broad band of it, because we used to be called mentally handicapped and so that is all I'm prepared to say. What I think I will be is a role model for other people to actually prove that they can do the same work as me. You don't have to have lots of qualifications when you leave school.

ATKINSON
Now Nicola you're going to be working alongside your co-tsar, that's Rob Gregg, the other learning disability tsar. How do you see Nicola's appointment?

GREGG
I think it's really important for two main reasons. The first is that the government has been very clear that people with learning disabilities should be involved in everything that's done about their lives and so appointing Nicola at this senior national level shows the seriousness that the government is taking in relation to that commitment. Secondly, if we're going to really change people's lives then we have to listen directly to the experience of people with learning disabilities and so Nicola's position, talking to government, representing people in the field, I'm sure will have a big impact upon the way in which, not only government works but which people out in the country work as well.

ATKINSON
Because you're quoted as saying that Nicola will be able to make a powerful contribution in a way that you could never do.

GREGG
That's true because although I can reflect and represent what people with learning disabilities say to me and what their families say to me, actually having somebody who has directly experienced services and directly experienced the prejudices that society tends to have against people with learning disabilities will be I suggest a lot more powerful in terms of influencing the way in which government and society as a whole operates.

ATKINSON
Nicola, in terms of what you want to achieve, what are the key areas you want to tackle?

SMITH
I think that we need to work closer together, we need to have the closure of the hospital campuses, the long stay hospitals - there are still people who live in campuses with 14 - sometimes they have to share bedrooms, they don't have the same as everybody else. And also they don't have the same healthcare because they are classed as inpatients. It's a known fact that people with learning disabilities do not have proper screening and it's actually been shown that we need to have screening like everybody else and we need it in formats that people can actually understand, like easy read. Because if we have it in easy read for us different people can actually use it, like people who've come from ethnic minorities will actually find it easier if their language isn't English.

ATKINSON
Now I've been talking to charities like MENCAP and SCOPE this morning and they've told me the main things they want you to do. One is tackling education, so that children with learning difficulties, for example, who want to go to a mainstream school will be able to do so, what's your take on that?

SMITH
I think that they should have a choice to do it but it needs to be carefully worked out because some of it works well and some of it doesn't. It needs to be as an individual and it needs to be appropriate for the person and it needs the right support for the people to actually go into mainstream schools.

ATKINSON
And employment - I mean you're a prime example but they're very keen that people with mild and moderate learning difficulties do have the right to employment.

SMITH
I think they should have the right because sadly they've always given us bad jobs and I'm going to show that this job - anyone can do it with a learning difficulty and I am just a forerunner for other people to have the job.

ATKINSON
There's recently been research which you may have read about in the papers which says that between 40 and 60% of children born to parents with learning difficulties are being taken away from their families. Firstly, do you think that is true and secondly, is that a problem or is that an acceptable situation?

SMITH
It is true and I'm going to work very closely with Rob to actually change it, to make sure that parents who have got learning difficulties and have children can actually have the right support right from when the child - before the child is born up to adulthood, if need be, and it will be done on an individual basis.

ATKINSON
Is there a situation though that can arise where people who have a learning disability are incapable of looking after their children?

SMITH
In some cases there might be times that they might have to go into care but that is in extreme cases.

ATKINSON
But again presumably you think it comes back to this assumption that people can't cope?

SMITH
Yeah and we should change the attitude of people and nurses and midwives. Now we are the same as everybody else.

ATKINSON
So a lot of this is actually to do with education isn't it - just getting across the message that people with learning disabilities should be treated just like anyone else?

SMITH
Well we're no different than anyone else, we've got a label over our heads but we're no different than anyone else.

ROBINSON
Nicola Smith, the Department of Health's new national clinical director for learning disabilities talking to Carolyn Atkinson. And it sounds as though one of Nicola Smith's main preoccupations is going to be the kind of long stay hospital or campuses, as she called them, that she herself lived in during her 20s, we're planning to follow her work.




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