Transcript of Interview with John Boyd

The following is a transcript of a live interview between John Boyd and myself live on BBC Radio Leeds, on Thurs 2nd Sept 2004 9:15am, about my inability to work due to beuraucratic red tape. You can listen to the interview in MP3 format (~7mb) instead if you prefer.

"Going to Work with Today's West Yorkshire - John Boyd.
(singing) Today's West Yorkshire - BBC Radio Leeds".

• Coming up next, we talk to a man who wants to work but can't because of red tape...

  ...

• Now, imagine life with a disability, in a residential home and unable to get paid work - it's not a pleasant thought. But it's actually a reality for 26 year old Doug Paulley, of Wetherby. And what makes matters worse is that Doug has the ability to work and he's had job offers too, and he actually wants to move out of residential care to look after himself. And he's not found it that easy! Morning Doug.

  Good morning.

• Why are you having so much difficulty?

  There's two problems really - the first is the lack of wheelchair accessible housing in Leeds. There's very little in the way of wheelchair accessible housing, and what there is isn't very well advertised. So, I can't live in the community, I've been forced to live in a residential home. And if you live in a residential home, the funding arrangements for that mean that it would actually, I would lose out if I was to work. I would actually be worse off if I was to earn money.

• Now, your disability leaves you wheelchair bound.

  That's right.

• How mobile are you?

  Fairly mobile, yeah. I can push myself most places. And I was offered two jobs as an accessible web designer recently, making websites that are accessible to, for example, blind people

• Right,

  And unfortunately I haven't been able to take up either of those job offers because I'm forced to live in a residential home and because of the funding arrangements preclude me working.

• OK what are those funding arrangements, because an awful lot of it goes on personal care the money doesn't it and we are talking just under a thousand pounds a week here aren't we?

  That's right, the home are currently wanting to charge £930 per week, which is under review and that covers accommodation, utilities and care. And partly that's funded through my Income Support, and partly that's funded by Social Services. And the situation is that anything over £20 that I earn, then gets sort of taken off the benefits agency's and the social services contribution to my home fees.

• Right.

  But on top of that, once I earn over the income support, once I earn more than that in total, I would lose things like free prescriptions and hospital transport and all this sort of thing.

• This really is red tape isn't it!

  Yes, that's right!

• I mean you're actually, through no fault of your own, caught right in the middle of a big problem here.

  That's right.

• How could that problem be solved?

  I think that it should be looked at nationally, the rules for residential funding, because I know that there are other people I have met in other residential homes who would be more than capable of working and willing to work, but can't because of the situation.

• Now if you were able to work and take up either of the two jobs which you have actually been headhunted for.

  Yes.

• If you were able to do that, whatever you were paid in those jobs, you would merely receive £20 a week out of that?

  That's right, and as I say I would actually lose out on the other stuff to do with prescriptions and free medical treatment.

• Who do you believe should be providing you with, or at least the opportunity, to live in normal accommodation where you're not receiving care?

  I would still need care in normal accommodation, though it could be provided in the community. I think Leeds City Council has really got to grab the bull by the horns here, because not only do they not have any accessible accommodation themselves, but the private rental agencies and estate agents in Leeds have no idea in general which of their houses are converted or could be converted for wheelchair access.

• Right.

  So if you go into an estate agent and you say, which of your houses are wheelchair accessible or have level access and could be converted, they have no idea, even though they have to go round and assess the houses for other reasons to check that the advert details are correct. So Leeds City Council needs to clamp down on that I think, and also sort out its own accessible accommodation.

• Anybody listening by the way, with council responsibility, if you want to reply you need to do so fairly quickly, we'd love to hear from you, 0845 303 3333.
• Now, wheelchair access means A that the doorways got to be wide enough first of all, but you've also got to have a ramp haven't you.

  That's right.

• So you'd want a ramp, the doorways - not just the front door - would all need to be wide enough.

  That's right.

• Would there need to be an alteration in the height of things, for example in the kitchen so that you could reach?

  Ideally, yes. There are grants that you can get for that sort of arrangements to be made.

• Yes.

  Yeah, But the main thing is physically being able to get around, into and around the house. The rest of the problems are minor in comparison.

• Would it be better if the house was all on one level, are we talking bungalow?

  That would be good really, yes.

• What sort of discourse have you had with the council on this matter, have you spoken to them personally? Because we know that you did send us an email explaining your position.

  My social worker, and other social workers before them, have done their best to try and find accommodation for me, and I've applied to various places, but they're just in so great demand, wheelchair accessible properties, that they simply haven't been able to find anything for me.

• So what you're saying is that there are some available, but there isn't one for you at the moment.

  That's right, and there isn't anywhere near enough for the number of people, and there's a lot of people in worse situations than me, people who're being carried up and down stairs by their parents. At least I live somewhere accessible, and they should rightly have priority for the houses before me.

• What sort of change would it make to your life Doug, if you were able to get hold of some wheelchair accessible property and move in there, and have care in the community? What change would it make to your life?

  It would make quite a substantial improvement to my life, because I'm stuck in Wetherby where there's no accessible transport, I'm stuck in a residential home, which, whilst it's a good residential home, is still an institution, and I'm not able to work because of that. If I lived in Wetherby (sic), I'd be able to get about and see my friends, do more, I'd be able to earn money and contribute back to Society, and I wouldn't be in an institution, I'd be in control of my own life.

• How long have you been in there, by the way?

  About two and a half years now.

• What were you doing before that?

  Before then I was in hospital for a few months, and before then I was struggling in an inaccessible house in Leeds, in Woodhouse.

• Right. So, Life hasn't been easy for you, but you're still smiling. What you're really asking for is a square deal.

  That's right. And not just for me, but for other people in the same situation.

• Do you know how many they number, because the Council would no doubt quote that wouldn't they.

  I don't know how many people in residential homes would be able to work. I think maybe this is something that should be checked on, because I have never been asked if I would be able to work, it's only through pushing.

• Yes.

  I wonder how many people just never considered the possibility of working, because they are in a residential home.

• It's pretty awful isn't it, when you think that you are bright, intelligent, you have this ability to design websites, but effectively at 26 years old, in the eyes of some, you've been cast on the scrap heap.

  Well yes, that's the way I would put it, yes. And also, accessible web design is something that should be in great demand at the moment, because every company has to have an accessible website under the Disability Discrimination Act. And people who may have the expertise in working with that sort of technology, more disabled people in residential homes, aren't able to give that expertise under the current system.

• As far as the websites are concerned, who taught you to do the design?

  It's combinations of being self taught and various people including somebody I know well at Leeds University, Drew Whitworth.

• Right. So you've now got this ability, you've been headhunted, were there any conditions attached to the jobs that were offered to you?

  Not really, I mean one in particular, working for a new disability-based magazine, they were prepared to be as flexible as possible in trying to employ me, but the problem is unless it's sorted soon then both companies are going to have to find somebody else because they need the work doing and I can't do it.

• OK, if it doesn't get sorted and you stay in care in Wetherby, this is a fight quite clearly that you want to take to the Council. What's your next move?

  I'm currently hoping to speak to my member for parliament, Colin Burgon, about this. I've involved him previously, and I've written to people high up in the Benefits Agency, and quite a few people have written to my social worker asking her to take it forward on my behalf, to try and sort it out for me, and for other people in my situation.

• Do you feel that you keep running into a brick wall?

  Yes, that's right! And a lot of people seem to make the assumption that disabled people, and particularly disabled people in residential homes, don't have the ability or the will to work.

• Is that your general opinion, being a resident yourself, are the others like that?

  Maybe the other residents have the assumption that they wouldn't be allowed to work.

• Yes, that's it isn't it really. It becomes a state of mind, you become conditioned.

  Yeah, because other people don't push people to do what they can whilst they...

• OK, well we did ask whether there was going to be any response from the council, there hasn't been, and to be truthful I didn't expect any quite so quickly but if there is one and we get one we would be delighted to pass it to you. Doug Paulley, thankyou very much for being with me.

  Thankyou very much for the opportunity.