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	TX: 12.11.04 -听The cost of disability PRESENTER: WINIFRED ROBINSON听听

	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 大象传媒 CANNOT VOUCH FOR ITS COMPLETE ACCURACY. 听 TX: 12.11.04 - The cost of disability 听 PRESENTER: WINIFRED ROBINSON 听听 ROBINSON Homes usually need to be adapted where a family member has a disability. There is some limited public money available to help but the rules and regulations applied have given rise to so much protest that these rules are now under government review in England and Wales. Take this example: George Armstrong is a policeman in Newcastle and his wife works part-time at a local school, between them they earn 拢37,000 a year. They have two children - Andrew, who is 10 has brittle bone disease. The Armstrong's need to adapt their home and they've been told they do not qualify for any help. 听 ARMSTRONG Andrew can't walk, he has use of a wheelchair. For getting into the bath he has to be lifted into the bath himself, for getting on to the loo at the moment - the toilet - he has to use a set of wooden steps and using these wooden steps on to the toilet means he can't close the toilet door. He needs full-time assistance in doing that. If we have the new bathroom, which would consist of a shower, he can use a wheelchair, bathroom type wheelchair, which he can easily move himself into a shower position and use the toilet himself. 听 ROBINSON And you feel that because he's now 10 he's really reached an age where he needs some privacy. 听 ARMSTRONG Very much, he's growing up - he's grown very quickly and that child and when I say 10 he's almost 11. I have been told that if we waited until he was 16 we would probably be able to apply for him in his own right and get it for nothing or get the assistance. But a child of 11, 12, 13 they grow very quickly, they don't want their mum or dad taking into the bathroom, putting them on the toilet, it's not a very good situation. 听 ROBINSON So how much is this extension going to cost you? 听 ARMSTRONG Well we've allowed for 拢25,000, so we've had to remortgage our house to raise the funds. 听 ROBINSON And you have been told that you're entitled to nothing towards that, nothing at all? 听 ARMSTRONG Nothing at all, in fact I did have a meeting with the local authority and they went through a complicated system and my contributions before receiving any grant would be 拢48陆 thousand pounds which is something I can't afford. 听 ROBINSON What do you say to those people who might say that when people improve their homes and put extensions on and downstairs bathrooms that they're improving the value of that and that's something that you as a family might profit from at a later date? 听 ARMSTRONG Well I don't consider myself to be improving the value of my house, I'm actually I would think - I'm lowering the value because I'm taking off what is considered a luxury item - a conservatory - which we've enjoyed, it was on the house when we bought it, we've had to take it away and build a room which not everybody would want and it wouldn't be as useful for other people. I don't think my value of my house is going to increase at all, it's cost me extra money and I think it's totally unfair that as a carer we have to pay for that and I feel that my son who needs independence, privacy, dignity while he's growing up is entitled to some kind of assistance, rather than the carer being penalised. 听 ROBINSON What are the alternatives for you and for Andrew if you do nothing at all? 听 ARMSTRONG I don't think there is any alternatives. I think as a responsible adult, a parent, you've got to pull out the stops, you've got to do everything you can to provide for your son and if that means going into debt then so be it. We considered moving house but the value of houses would be more, we initially considered a bungalow, but again we'd have to still have to do certain adaptations to the house which would cost again. So we're in a catch 22 situation. 听 ROBINSON George Armstrong. Kate Sheehan is a member of the government panel reviewing the rules on disabled facilities grants, because that's what they're called, she's representing the Royal College of Occupational Therapists on that panel. Where do occupational therapists feature in all of this then? 听 SHEEHAN The occupational therapist is usually the first point of access for families to apply for the disabled facilities grant. We visit the child at home and assess their needs in partnership with the parents and we make comprehensive recommendations to the housing department for the grant. We then pass these on to the housing department, which then starts the complicated grant process. 听 ROBINSON So the first stage when you apply for a disabled facilities grant would be a visit from someone like you to just say what exactly is needed? 听 SHEEHAN That's usually what happens in the statutory field yes. 听 ROBINSON Now I know the means testing is complicated but in very broad brush terms could you explain how it works? 听 SHEEHAN It works whereby the parents income is taken into account, and that takes into account things like their wages, pensions, savings, investments, second homes - any sort of income that's coming into the home and that's both mother and father. And then there is a kind of set amount put against that from central government to take into account what they believe are living costs. Unfortunately, it doesn't take into account what I would call actual costs. 听 ROBINSON So your real out-goings don't matter. 听 SHEEHAN It doesn't take into account real out-goings, so it doesn't take into account mortgages, it doesn't take into account loan payments, and all the additional costs that are associated with having a disabled child. 听 ROBINSON And I understand too that there is anyway a cap on the amount that you can get, even if you could prove that you had nothing to contribute. 听 SHEEHAN There is, there is a grant limit of 拢25,000 in England and 拢30,000 in Wales. 听 ROBINSON Now how does it differ between adults and children, because you were talking there about the parents might call you in, how would it be for somebody who, I don't know, perhaps left hospital with cancer and could no longer walk around? 听 SHEEHAN This is the biggest kind of controversy where it comes to the grant process. If you're an adult you're seen as an individual in your own right, so you yourself would have your income assessed. If you are a child your parents' income is taken into account and you're not seen as an individual in your own right. So whereas most of the children in this country don't have an income and therefore would get a full grant, it doesn't happen with adults, it won't be taken into account the partner's contribution. 听 ROBINSON But what if you're an adult and you're not working through disability but you are in a couple where the other person is working or where there is some joint assets? 听 SHEEHAN Where there's joint assets they will take 50% of it. 听 ROBINSON And what about where the other partner is working? 听 SHEEHAN They won't take that into account. 听 ROBINSON Well we heard from George Armstrong who's remortgaging his home in Newcastle to provide his son with some basic privacy. Another similar case is due before the Court of Appeal next month - that's the case of Henrietta and Michael Spink who have two severely disabled children - Henry who is 16 and Freddie who is 12. Both of these boys need 24 hour care. The Spinks have given up their jobs to care for their boys and now their home in London needs extensive adaptations. They have been refused a grant on the grounds that they have a second home - a cottage in Cornwall - which they could sell. They took their local authority Wandsworth to court to challenge this decision but they lost and so now the case is going to appeal. Henrietta Spink put their side of it all to Melanie Abbot. 听 HENRIETTA SPINK We're in the front garden here and we've got three stairs going up into the house and that's our first great hurdle. We have a ramp that is way, way too steep and getting the boys up it is rather a nightmare, even just pushing the wheelchair up it is pretty hard and pretty slippery. 听 ABBOT What would you like to have here then in an ideal world if you had the money? 听 HENRIETTA SPINK A step ramp - basically you wheel them onto a platform, a bit like the ones on the buses, and it just goes up. And if we go on into the house, like most houses the first thing that we're confronted with are the stairs here, we're actually on four levels and there's a very long flight of stairs just as you come into the house with 12 treads and getting the kids up and down there for 12 years was back breaking and we pleaded and pleaded for a stair lift, it was a joke. I mean Henry was - it was dangerous, I mean his feet were dangling and they were bound to catch and I was going to fall with him. We had a piece of press about our difficulties and Wilbur Smith, the author, read this and his wife had just died very sadly and he had bought three stair lifts for her, which in fact had never been unwrapped, and he said did we want them and it changed our lives, literally, overnight, I mean I just - I could hardly sleep that night actually for joy, it was just incredible. 听 ABBOT So once up the stairs I suppose at bedtime the next struggle is getting them ready for bed - getting them bathed and so on. 听 HENRIETTA SPINK Yes, basically we've got a bath that's actually way too small. We do have a bath seat now but we only got it about three years ago. I mean for Freddie this is fine, for Henry though he should really have a ceiling track hoist. Or the other thing would be to have a walk-in shower where you sit on a seat and then you go in the shower. That would be the best design for both of them. 听 ABBOT Some people might say perhaps this grant should be means tested, for instance you have a second home. 听 HENRIETTA SPINK The problem is our debts - which are about 拢300,000 now - are far more than the value of that cottage, so we're now being forced to sell our London house to pay off our debts. 听 ABBOT So once they're ready for bed - this is Henry's room that we're in now? 听 HENRIETTA SPINK It is and he's got a sort of rather old fashioned cabin bed and basically we have to lift him over the side. I mean it's completely unsafe, it's actually quite amazing that he's not fallen out and broken his neck. And ideally what we need is a proper hospital bed with sides to it, that would be the ideal solution. 听 ABBOT How much money do you think all of these ideal solutions would cost? 听 HENRIETTA SPINK I mean we're probably talking 脗拢60,000 for both boys - 拢30,000 each sort of thing. 听 ABBOT People will say this is not an easy house for two disabled children. If we go downstairs again - four flights of stairs. So some people might say why not move? 听 HENRIETTA SPINK We're frantic to move, desperate to move and have been for a long time, it's just not that straightforward. If we moved house we'd have to go back to square one, we wouldn't automatically receive a social services care package, we'd start with nothing. If we put our children in care it would cost them 脗拢300,000 a year but we'd be free. If I was a single mum I'd get far, far more help - so if Michael left me I'd be much better off. It's just a real tragedy that they won't try and help a family stay together. 听 ABBOT You and your husband have given up work though to look after the boys and yet you do have carers come in, wouldn't it be feasible for one of you to go out to work? 听 HENRIETTA SPINK If you go along and try and get a full-time job and say well actually I need to have 18 weeks off for all holidays, half terms and I need at the drop of a hat days off for emergencies and then there are the hospital visits and all the rest of it, then all the court cases - it's a slow grinding down, it's soul destroying and it leaves you absolutely wiped out, washed out and then you have to get up all night as well seven days a week. 听 ROBINSON Henrietta Spink. Wandsworth Council say the ruling against the Spinks was important for all local councils because - and I'm quoting now: "We all work on the basis that if public money is to be made available for services then we must first carry out an assessment of the parents' means." 听 Well a coalition of the UK's leading disabilities charities has been campaigning for a complete overhaul of this disabled facilities grant and an end to means testing. Jo Williams is chief executive of one of the charities MENCAP. Jo, before we move on, your reaction to the Spinks predicament, which seems that on the face of it at lest to be terribly unjust. 听 WILLIAMS Well I think we heard from many people and not just the two families this morning that what they find is that the whole process is terribly complicated, often very drawn out. Even if you go through the process and a grant is going to be made available sometimes families have to - are put on a waiting list until there's some money made available. And we believe that by abolishing the means testing we would enable people to have some practical help and support to carry out their caring role. Most families are asking for support that's reasonable - I don't think people ask for more than they want. They're doing sometimes a very complex, seven day a week, 24 hour a day job. And as Kate has said already the cost of caring for a child or children with a disability is significantly more than an ordinary child - transport costs, maybe dietary needs, as well as all the practical issues around the home. So we believe that this review should take a brave step - abolish that means test, support people in their caring role by giving this practical assistance. And that would, I think, for many people be a great relief. 听 ROBINSON But are you campaigning for it to be abolished simply for children or for adults as well? 听 WILLIAMS We're campaigning for children, it's a coalition of charities concerned with disability and children's charities. 听 ROBINSON And what about the situation where adults are concerned because again couples can find themselves being told to sell assets on the basis of quite modest incomes? 听 WILLIAMS Well that's right and clearly there's within the review opportunity for comments to be made about that. I'm sure the same applies in the adult world, that it's often those families who are kind of caught in the middle - average income families - who will probably have to take loans out. So as part of the review I'm sure others will be commenting on what might be a fairer system for adults as well as children. 听 ROBINSON Kate Sheehan, what do you think will happen? 听 SHEEHAN I think certainly the College of Occupational Therapists would support a complete overhaul of the means test. It is archaic in the way it is undertaken and it needs to look at realistic costs in today's society. 听 ROBINSON Because of housing costs having risen so dramatically. 听 SHEEHAN Because of housing costs and because of the fact that people's mortgage in relation to their income is often a lot higher than it used to be. And some joint income parents have got 100% mortgages which is taking 50% of their income. 听 ROBINSON Well Brendan McKeever's in our studio in Londonderry, he led a campaign in Northern Ireland for the abolition of means testing for disabled facilities grants for children and it was a success. Brendan when was that? 听 MCKEEVER It was announced last December and took effect from the middle of February this year. But I mean it was a strategic decision made by [indistinct word] for children in the UK that Northern Ireland would lead this up, that is why we expect England and Wales to follow suit. 听 ROBINSON Now when there are ever calls for any extra funding the argument against is always that it will open the floodgates, do you know yet in Northern Ireland what will be the financial results of the decision that you've taken? 听 MCKEEVER There were concerns here because I was actually in the review in Northern Ireland about that particular point but it's too early to say yet because it's only in February but I was at the Occupational Therapist Conference in Durham where representatives from the housing sector in Northern Ireland said it had made no significant difference. You see there is only so many disabled children and also the process, as already pointed out, is quite slow. So I mean there can't be a flood of applications. 听 ROBINSON Because - but I mean why not because I'm told that lots of parents just simply don't apply because they know they'll have to wait for three or four years and they know they probably won't qualify? 听 MCKEEVER Because what I'm saying is the process itself has taken so long to process the applications. But in the review we recognised that some parents who would have pulled out of the system because of the means test were going to come in but you're not talking about quite a significant number of disabled children and families. The grant system itself is mainly taken up with adult grants and then the proportion for the children's grant is quite small. So people run away with ideas that you need a large investment, you need additional resources, I mean the campaign have said that but we're resourcing families to support themselves in the community, instead of paying what 拢50,000 a year to put a child in care, parents won't do that but we must support families in the community because families are investment as already stated - I mean they go into debt over this and it's unfair because it's so right to have a safe accessible home. The parent doesn't wake up in the morning and say - Oh I'd love an adaptation. An occupational therapist assesses need, if that need goes unmet it is unmet need and I think we need to remind ourselves of that. And that's why we call - sorry. 听 ROBINSON Sorry, I just want to bring Jo Williams into the discussion because we don't have unlimited time. Have the charities campaigning for this change costed it realistically? 听 WILLIAMS Well we're obviously watching very carefully what's happening in Northern Ireland. 听 ROBINSON As Brendan McKeever was saying it's probably really too early to say. 听 WILLIAMS It is, it is. But our information is really that we believe many families do ask for things that are reasonable and I think that's what Brendan was saying as well - that we really need to think about how we support these families appropriately. And we may be talking in the region of perhaps 脗拢120 million or something like that, well in the scale of things actually given the commitment they make as carers it's not an unreasonable figure, particularly when you think, as Brendan has been saying, some of the costs of public support for those individuals. 听 SHEEHAN I think it's also very important to note that parents are actually providing care free of charge and the actual cost of putting a child in residential care is over a 拢100,000 per year, you can put in an adaptation for 脗拢50,000 which will allow a child accessibility in their own home, allow them dignity, allow them privacy, allow them to get out and be part of education and leisure - it supports the family. 听 ROBINSON You're on the panel, briefly, what do you think is going to happen? 听 SHEEHAN It's difficult to say what's going to happen, it's very much in the early stages. Certainly I personally would like to see a complete revamp of the process - it's far too bureaucratic, it's too complicated, it's too slow and it's very difficult for anybody to understand. Secondly, they really do need to review the means testing - it's archaic, it doesn't help and it doesn't take into account realistic costs. 听 ROBINSON Well I'm sure this is a subject we're going to come back to in the future. Thank you all very much. Back to the Transcripts homepage Back to the You and Yours homepage The 大象传媒 is not responsible for external websites

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