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| TX: 13.07.06 - Independent Living PRESENTER: PETER WHITE |
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| Downloaded from www.bbc.co.uk/radio4 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. PAULEY [PHON.] I've been living in a residential home since October 2001. It was intended only ever to be a short term placement but there's just not been the suitable facilities and accommodation for me to move out. I've just finished a first class honours degree in geo sciences and IT, most people in my situation would now be looking for a job but I'm forced to live in a residential home because they say they can't provide appropriate facilities for me to live elsewhere. The government gives lip service to independence but don't actually enable people to be as independent as they would like. A lot of the time it feels like the government wants to say these things because it sounds good and because they know that the public will like it without actually wanting to put their commitment there. WHITE Doug Pauley from Wetherby in Yorkshire, expressing the frustrations of being forced to live in residential care. So imagine if you lost perhaps the ability to walk or to see, to speak or move and could no longer perform physical tasks to help you run your home. For thousands of people who live in the UK, who are disabled or living with a long term medical condition, this is a reality. But arguably their right to live independently in the location they want to, with the support they need, at a cost that's affordable, is far from a foregone conclusion. The veteran MP Jack Ashley, who is himself hearing impaired, tomorrow sees his Independent Living Bill receive its second reading in the House of Lords. His aim: to put into law the right for disabled people to live independently. So what is the Independent Living Bill all about? Here's our disability affairs reporter Carolyn Atkinson . ATKINSON Well this is all about the right to live an ordinary life, so making sure that disabled people have exactly the same choices, the same freedoms, dignity and control over their lives as anyone else and we're talking at home, at work and socially in the community. And this is the key bit - it means having the right to practical assistance and support so that disabled people can get on with their lives. Now it's something that disability groups have been campaigning for, for some time and just to give a personal flavour of the wide variety of people that Jack Ashley's bill could affect, earlier this week we met up with him at a meeting organised by Sian Vasey, from the Ealing Centre for Independent Living in London. VASEY Today here I think we've got quite a representative group of the kind of people who'll benefit from the bill if it ever becomes an act. And we've got different aspects of the issues that the bill deals with embodied in flesh and blood in this room, which is marvellous. BREAKWELL My name's Rudy Breakwell. I'm 52 and I've got a spinal injury since the age of 17 when I had a skiing accident. But it happened about three years ago that I was having my own personal review by a social worker to see how I was doing, how I was living and so on and so forth and I just let it slip that I'd worked a couple of times the previous year. So what they then saw fit to do was to actually remove the rather astonishing sum of £1700 per month out of my funding and basically saying that that was money which I clearly didn't need, with the result that for an entire year I was unable to pay the taxes on my personal assistance and I now owe several thousand pounds to the Inland Revenue, money which I was never supposed to be in a position to have to pay off myself. I still have this sort of Damoclesian sword over me where I'm permanently paying off these arrears on my taxes from the Inland Revenue as a result of the Independent Living Fund just basically doing what it felt like doing. MERRIBORE [PHON.] My name is Tony Merribore. Before going back about five years ago I used to have carers from the social services, they never gave me any encouragement to do anything. Now I've got independent living direct payments my carer I've now had four years gives me encouragement. COWAN My name's Alex Cowan. I'm a wheelchair user and I have multiple sclerosis. I have a very good care plan now but because I have a changing condition and because it is not yet enshrined in law as a right to independent living I actually have days in which I live in fear that the council might turn round to me and say actually we're cutting your hours. And on good days, when I've come back, when I've maybe given a really good training session or a really good talk and had such fantastic feedback and talks with the people there and I suddenly think to myself what if I didn't have the level of assistance that has allowed me to do this, what if the council cut my hours? And quite frankly life would be hell. But I live with that fear and I tell you that can be demoralising and very depressing. ATKINSON Well there's some of the almost two million people currently trying to live independently in the UK but who are struggling to do so. WHITE Okay, let's run through the key parts of what living independently actually means. Firstly the right to basic care? ATKINSON Well yes that's help getting up, washing, dressing, going to the toilet, preparing meals - all the basics. Now what Jack Ashley has highlighted is how much eligibility criteria - that's the right to get care - vary across the UK. In some areas support is so tightly rationed that according to him people are left to deteriorate until their situation becomes so bad that they then have to be supported. And he points out that many of the situations that disabled people find themselves in contravene the European Convention on Human Rights. So that's things like, for example, the right to a family life, now some disabled people like Doug Pauley, who we were hearing from earlier, are sent, against their will, to residential care because it's more cost effective than providing adequate support in their own homes. And as Doug says they just end up feeling like a passive recipient of care, rather than an active assertive citizen who just needs a bit of support. WHITE So what else constitutes independent living? ATKINSON Well the most important thing probably is a house and a house which suits your needs, that is crucial, so if you can't get in the bath or the shower, if you're a wheelchair user, you can't get up the stairs, you can't walk up a flight of steps to your front door - they're all barriers to staying in your current home. And two problems occur here because the cost of adapting a home is often thousands of pounds, there are grants to help but they're means tested and they're capped at just £25,000. And adapted local authority housing is in very short supply, arguably, some people would say, it was lost in the right to buy council house sell offs. Now in his bill Jack Ashley is also calling for something called the Lifetime Home Standard to be fully enforced. It's supposed to ensure that house builders build homes that then can be adapted easily to meet people's needs if they become disabled. A simple example would be, make a downstairs loo level with a drainage point and then you can turn it into a shower room. But of course this isn't happening in every case. WHITE Finally for people who are lucky enough to have been assessed as needing support there's the right for the disabled person to decide what kind of support they should have. ATKINSON Yes and just to explain - in the past a disabled person was told, for example, you'll get 10 hours care a week, somebody will come in at 7 o'clock every morning to help get you out of bed, for example, no choice, no lying in on a Sunday morning, no staying up after a late night out - 7 o'clock every time. Now the situation has changed and now people should be offered the equivalent in money, direct to them, to decide how to spend it. So they choose who supports them and when that person comes in to help. And these are called direct payments. Now some people are still being refused direct payments, including many people with learning disabilities. Now arguably some people would not be able to organise their own care but many are not being given the opportunity to nominate someone else who could do it for them. And all of this has an impact on unpaid carers - that's spouses, sons, daughters, parents - anyone looking after a relative or family friend. Six million people in the UK are doing that at the moment and recent research shows that their health and their lives are suffering. So the argument goes that the more support for independent living would actually reduce the burden on those unpaid carers as well. WHITE Now up till now we've been talking very much about physical caring but what about other areas of independent living? ATKINSON Well there's a whole host of other areas which all follow on from all of us. Things that people who don't have a disability just take for granted - the right to a job, to socialise, to go swimming, catch the bus, even to move house without having to renegotiate everything that we've already discussed with the new council's social services. Basically to live their life as an adult rather than a dependent child. WHITE That's Carolyn Atkinson . Now listening to that with me is Jane Campbell from the Disability Rights Commission and on the line is Jeff Jerome, co-chair of the Association of Directors of Social Services Disability Committee. Jane, first of all, we heard a lot of examples there from people describing the kind of care they got, how typical are those experiences of people like Doug Pauley? CAMPBELL Oh it's very typical indeed, I'm afraid Peter, in fact actually you could get better independent living packages in the late '80s than you can now. Unfortunately social care has been systematically under funded for many, many years now. But at the same time as being under funded it's a highly over-bureaucratic system which keeps many disabled people in a state of dependency. And the scarce resources that there are, are currently being spent in the wrong way. WHITE So how would the Independent Living Bill help, assuming - Sian Vasey made the point - assuming it passes, isn't it one of those wouldn't it be lovely if kind of bills, a bit like the Chronically Sick and Disabled Act of 30 odd years ago? CAMPBELL Well absolutely not. Lord Ashley's bill sets out a radical series of policy reforms which will really turn the culture of dependency into one of independency. It will give freedom, dignity, choice and control to disabled people so they can really begin to take control of their lives and control of their destiny. At the moment it's the professionals and it's others that basically run our lives. WHITE But does it say where the money comes from? CAMPBELL Ah the money, well how much does it take society to keep people in a state of dependency? Millions, upon millions, upon millions. Think of all the residential homes, think of all the benefits bills, think of all the unadapted housing where you actually have to get people to come in and many people to look after people who are in dependency. I think there is a potential saving of over a hundred million in the long term if we were to take this bill and make the kind of reforms that are necessary. WHITE Okay, let me bring in Jeff Jerome. It's your people who will be charged with delivering the requirements of this bill, how practical do you think it is? JEROME Well good afternoon, hello to Jane, thanks very much. In terms of practicality obviously we need to see the detail of the bill but in terms of the aspirations that are being proposed, as I understand them at the moment, I think the Association of Directors of Social Services and all people in local government and social services would absolutely support them. And in fact already are doing I think. WHITE But we wouldn't expect anybody to say that they didn't support the idea these days of independent living for disabled people, the question is can it be delivered and do you accept Jane's thesis that actually it should be a way of saving money not spending it? JEROME Well I can't be clear about the - in terms of the cost effectiveness of it but it sounds like it could be. I mean certainly Jane's point about under funding is one that the local government association and ourselves have already raised, you know we are concerned about the lack of money in the system and we've pointed out that it's something like £1.75 billion short at the moment. But in terms of the sorts of things that were raised in the programme, I mean we have eligibility criteria, which I think we would accept are sometimes differently applied in different parts of the country but they are set on a national standard, we do try and concentrate services on those people most in need. WHITE Can I bring - can I come in on that point because that is a very important point? As things stand I think 70% of local authorities - of councils will now only offer services to people whose needs are judged as critical or substantial because - mainly because of budget constraints. So you are in a rationing business aren't you. JEROME We are absolutely. Sorry did you want Jane to come in on that? WHITE No I want you to say whether this will change and whether you foresee that changing with this bill. JEROME Well we certainly are in the rationing business, we have been for some time. But we try as fairly as possible to concentrate resources on those most in need. I mean Jane's made the point really that if you like - and some of your programme presentations have made the point - that we do need to reinvest money, if you like, at people with lower level needs, to use that as a sort of categorisation. And in fact that is part of the government agenda and local authority agenda. But there is an issue about making sure that the funding's there and I think the Association of Directors of Social Services would argue that we need a full look at the system all the way through into healthcare to see what people's individual contributions to the tax system, different ways of using public sector money should be to actually make sure there is a proper funding approach, not just of social care but all the way through the healthcare system. WHITE Well let me just bring Jane back on that because you've been associated in the past - strongly with campaigning for people with the most severe needs but do you accept that this would also provide a way of help trickling - because sometimes people with less severe disabilities still have very complex needs - Jane? CAMPBELL Oh well yes, well certainly what I would say firstly is let's not - let's not think of ourselves - sorry let's not convince ourselves that actually resources are going to people with very high level of needs. If it is I would like to ask the question - why people who have very high levels of needs are really being washed, fed and taken to the toilet twice a day? I can give you many examples of people who cannot move more than a few limbs who are left for hours and hours during the day, in front of the television, and will have a visit in the morning, at lunchtime and at night. So if you want to go to the toilet four times a day well tough. So I don't think resources are going just to people with high levels of needs and they're okay because they're not. What I would say is that there is a public expectation out there and the MORI poll that was just done recently, conducted by the DRC and Carers UK, said that actually the public not only feel or are convinced that if they should become disabled they will be supported by social services to stay in their own home - so when we tell them the reality of the situation they're quite surprised - but also they said they would be more than prepared to spend more in their taxes to provide that kind of support. So I think we need to look as a society about what the public expects and what they're prepared to pay for. WHITE I want to bring in Andrew Lee, at this point, of People First, which as an advocacy organisation for people with learning disabilities. The people you represent - how much is independent living an issue for you? LEE It's a massive issue, absolutely massive. It's the difference between being able to actually choose and decide what you want to actually do and not on a number of occasions we've had about - for about 15 years I've had members that have been fighting to live independently and they're still on the council waiting list, they're actually trying - they're still told by their social worker that they'll find somewhere but still waiting. We've had members that have been in immediate crisis and social workers we've had - support worker having to do a social worker's job because the social worker can't be bothered to pull their finger out and do the job that she's paid for. We've had ... WHITE Andrew, sorry I must stop you there because I want to get a final answer on the crucial issue. Jeff Jerome you've been indicating that you haven't seen the figures and the detail of this yet and you don't know quite what money is involved, surely that's absolutely crucial. Jane's made the point that it's important to establish the philosophy but do you really know how this is going to work? JEROME No obviously I don't know exactly how it will work and we would support the philosophy, I don't think there's any problem at all with that. We'd need to see what the implications would be, there have been a number of reports recently explaining that for example the one by Derek Wanless explaining the problem we've got particularly with an ageing population in terms of costs. I would fully support what Jane said about the need for a public debate on if you like people's contribution and on taxation, I think that's the position of my association. And we need to look at the figures but this isn't just a social services issue, it's an issue for the healthcare services and for local government and for the voluntary sector, it's a public sector discussion about how we care for people into the next 20 years really with a changing demographics. WHITE Well this is only the start of the debate and I'm sure it will reoccur on this programme. Jane Campbell, Jeff Jerome, Andrew Lee thank you all very much indeed. Back to the You and Yours homepage The BBC is not responsible for external websites |
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