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 | You and Yours - Transcript BBC Radio 4 |
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| TX: 12.10.06 - Disabled Children's Services PRESENTER: LIZ BARCLAY |
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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. BARCLAY About 1 in every 14 British children has a disability and the types of disabilities are becoming more severe. Yet social services in the UK are poorly equipped to support them and their families. The government itself has recognised the system's failing and that getting the help they need is a lottery for parents. As part of the 2007 comprehensive spending review the economic secretary to the Treasury, Ed Balls, has promised he will address the poor state of children's disability services. He told me why he feels the issue is particularly important. BALLS Well I think you judge the civilisation and decency of a society by the way in which you treat people with disabilities and that's particularly true of children's disabilities at the beginning of their lives. And the fact is that we aren't doing well enough and even though there's been a lot more money go in and even though there's some very good examples round the country of local authorities doing good services, but also parents and the voluntary sector being part of that, there's still far too many gaps in provision, there are far too many families who don't feel that they're getting a fair deal. That's why I've been happy to back the Every Disabled Child Matters campaign and it's also why I'm very pleased to be leading this review at the Treasury. BARCLAY Well as you said there certainly are some good services around the country and let's hear what can be achieved if there's enough money in the pot. A pilot scheme in Guildford is proving that it's possible to provide the services for disabled children and their families that they need and that it can even be quite a lot of fun. Nicola Fell reports from Disability Challengers. LAW So this is our playground, this is the largest single structure specifically built for young disabled people to play on anywhere in the country. It's structured such that it offers a range of challenging opportunities. So you can see that there's this very slow gentle ramp here, which gives young wheelchair using people access to quite considerable height and excitement. So the structure is designed to challenge young people's impairments through play. This is one of my favourite parts here, as you can see we're surrounded by three bridges. This one's specifically designed - it bounces up and down - it's all about balance. This one you can see requires the young person to place one foot quite carefully in front of the other, so if they're a bit ataxic, if they're a bit wobbly on their legs, then that's quite an interesting challenge. And this bridge over here, as you can see, it moves in every different direction, so that's all about coordination of the [indistinct words] hip joint and keeping your balance. As far as the young person's concerned it's just lots and lots of fun. TINA My name's Tina. I'm a single parent. I have three children, I have two daughters and I have Harry. Harry, Harry how old are you? HARRY Ten. TINA No you're not, you're 12. HARRY I'm 12. TINA You're getting a little bit stressed. If it's nice outside he likes to be on a bouncy castle or the park but these autistic children have some kind of speciality and Harry does like puzzles. Like at home you can't put Harry outside to play with a child because Harry wouldn't understand that if the ball went into the road that he can't run out and get it if a car was coming. If he didn't have this, I mean he wouldn't have anywhere really to play. It's good for me because this is a form respite and it's a good way for the children to learn through interactive play. LAW Welcome to the sensory room. These are two rooms that are specifically designed for children with the most severe impairments, children who spend most of their lives having things done for them or to them. And what we've done with these rooms is we've made it so that it doesn't matter how complex or severe a young person's impairment, they should be able to interact with their environment, get things to happen, enjoy activities. So if waggling your head is what you do best then we have equipment here which will detect movement and you can prop a young person up in a supportive mattress and aim the sound beam which is this piece of kit at the head and as they waggle their head then they'll produce sounds or they'll make lights change in the room. The noise you can hear in the background is this bulb screen which is interacting, we can press buttons and make it change colour or it'll change colour on its own. It's not just interesting because of what it looks like, young people quite enjoy the sound and they quite enjoy the vibration of it. If we move through into the white room. And once again it's extremely interactive, so they can cause things to come on and off, lights to change, make sounds and so on. So it really is an environment where it doesn't matter what the child's ability is, we can harness that ability to allow them to interact with their environment. And for young disabled people sometimes when the world gets too much for them we can change the sensory input, we can make it very settled, very calming, very quiet and you bring a young person in under those circumstances and they'll literally settle after two minutes. Do you like the sensory room Pippa? FELL What's your favourite room? PIPPA Here. FELL Here. What's your name? MARCUS Marcus. FELL How old are you? MARCUS Fifteen now. FELL Who's your favourite friend that you know here? MARCUS Rob. FELL How old's Rob? MARCUS Thirty. PRESSIE What do you do with Rob Marcus? MARCUS Play monsters in the dark. PRESSIE That's right - monsters in the dark. My name is Sue Pressie, I have a husband, Jonathan, and three sons. Marcus has moderate to severe learning difficulties, he has severe speech and language disorder and he's on the autistic spectrum, so quite a bit to contend with. He's been coming here since he was six. He comes here really because if he didn't he wouldn't have a social life, I think that's the baseline of it, which is something that a young adult like Marcus is actually quite difficult. A parent really has given us all the time to do things for ourselves that again possibly wouldn't be able to manage to do. So it gives you a balance which it's very difficult to get if you've get a disabled child. FELL Do you feel there's enough support out there provided by the government or enough social services there for you or for parents with disabled children? PRESSIE In terms of education there's quite a lot of support but it's almost as if apart from education he doesn't exist as a child with a disability. There's very little of this type of facility in the county or in the country. FELL How many projects are there like this around the country? LAW Far too few. It's a national disgrace that we largely underestimate the lack of provision for young disabled people and their families. It's a national disgrace that young disabled people and their families are amongst the most disenfranchised groups in society. And it's a national disgrace that we don't understand - we don't recognise the pressure that these families come under and the effects on the lives of not just the children in the family but the entire family is immeasurable. BARCLAY Ric Law, chief executive of the Disability Challengers scheme in Guildford. Minister, Ric says services for disabled children are Britain are a national disgrace, would you go that far? BALLS I would say that the disgrace is that it's too much of a lottery and there are some examples of great services, like we've just been hearing, and there are other parts of the country where parents are not getting the support they need. And in the review we're doing we decided to start by listening to parents themselves and to the experts before we get on with our work here at the Treasury. And we've been hearing from all around the country these concerns about respite care and about speech therapy, about the lack of key workers and about the lack of coordination. BARCLAY Well let me bring in another issue because on top of those services for disabled children and their families, BDF - the birth defect charity - has a further concern and that's about specialist equipment. They believe that they system for providing equipment to disabled children's on the verge of collapse, for instance children who can't go to school because they don't have a wheelchair or children being bathed in buckets and garages because there are no specialist bathing equipment. This is another indication why the system is failing. BALLS Well I've read their report and I've also read their case studies and there's no doubt from my experience in my own constituency that these particular case study problems are coming up all the time. I don't think we can say at the moment that the system is broken or not working. Part of our problem in this whole area is that we haven't really collected the information that we need consistently across the country about what's happening and therefore we keep hearing these particular stories which are distressing and wrong but we don't know how much that adds up to a general problem across the country. I think you'll find there are loads of really good examples of good care being provided but also too often people who are falling through the gap and my fear is that too often people fall through the gap because they aren't the people who are banging on the door and shouting maybe because they've got so many pressures themselves. It's not fair in a society for it to be only the people who are vocal who get the care they need and it's obviously not working at the moment and we need to do much better. BARCLAY Okay but while you're collecting information people are still in despair. Isn't what we really need a cohesive national strategy for disabled children's services, at the minute there's simply too many departments involved - health, education, the children's minister - and families just slip through the cracks? BALLS It's partly though that you've got these different agencies involved at different departments because you're dealing with very, very complex needs and if you've got a children with a serious health problem and with a learning difficulty you've got to then coordinate provision across health, across education, across transport, across social services - it is complex. What I fear is that too often we leave parents to navigate through these complexities on their own, we should do much more to have a first point of contact at an early stage who can then be the advisor to the parent and help them to get through. At the same time we have moved from central provision to allowing local authorities to be in the lead and with children's trust trying to bring it all together. That has great advantages because you have more innovation, you have more local control but it also means that too often there are some authorities who aren't providing the best kind of care and we need to make sure that you get the best care wherever you live. BARCLAY Well the change in profile of disabled children and their families is a point that Clare Gent from the national children's charity NCH is keen for government to take into account. GENT The population of disabled children is changing. Partly because fewer children with less complex needs are born and more children with more needs are needing to use services which means that there's an increased demand for these very intensive type of services but there hasn't been a corresponding growth in the development of services. Poverty's another big issue for families with a disabled child. Around 50% of families live around the margins of poverty. Families are often benefit dependent, we know that it costs three times as much to raise a disabled child, some families find themselves really caught in this kind of poverty trap. BARCLAY Clare Gent from NCH. Minister, what about that whole issue of the poverty trap, it does take about three times as much to bring up a disabled child? BALLS You're much more likely to live in poverty if you've got a disabled child, it's because you're much less likely to have working parents in a family with a disabled child and also because you have greater costs. And my fear - and I think this is one of the issues which is going to come out of the review - is that if you hang back and wait and don't intervene early it's not only much more stressful but it's much more expensive. And if we can shift our use of resources into early intervention on speech therapy, on respite care, on giving parents support so they can continue to live as a family, then you don't have the huge expenditure and cost and distress of broken of families and children needing to go into residential care. BARCLAY That's why I come back to the question of surely what we need is a cohesive national strategy. BALLS Well we have a spending review which is going on at the moment. We've announced a particular review of services for families with disabled children. We've been consulting around the country and in parliament. What we need to do now is translate that resource into practical steps which we can take and that's what our review is about. BARCLAY You have the Audit Commission in 2003 and the government identified problems then, such as the fact that only 4% of disabled children are supported by social services, why are we still waiting? BALLS In 1997 when we came into government we had a report which said that services for disabled children were woeful and since then there's been very substantial improvement and more resource. But it's not good enough, there are too many gaps. BARCLAY So when will we see improved services, what can you say to families who are struggling to cope now? BALLS I would say to families who are struggling to cope now that the input you have had into the work we're doing has been hugely valuable, we've had 400 different submissions over the last few months. I say keep those coming in, we need to know about the detail, we also need to work out how we can then make good and best practice systematic across the country. I want parents to know that we understand it's stressful, we understand it's really difficult and we aren't going to be able to solve this overnight … BARCLAY But with respect that's not terribly reassuring as I say, to families who are struggling to cope now, how long are they going to have to wait - 10 years? BALLS To those families who are missing out at the moment I understand their frustrations, there are complex policy issues to sort out, we need to do it much better in future, that is what our review is intending to do. BARCLAY So you're not denying that it could take 10 years before we see significant changes? BALLS Well I didn't say 10 years, I said that we're going to be doing the review over the next few months which will be reporting in the early part of next year and we would like to see immediate changes and we want to see the best practice being spread round the country now and if there are parents who are being badly treated we should be sorting that out immediately. So I'm certainly not saying let's put it off for 10 years but at the same time it's going to take time and I don't think there's any point in me denying that today, I can't wave a magic wand and solve every problem for every parent in the country, even though, believe me, I'd love to do so. But what I can do is say that we are really committed to making things improve, we're working very hard to make that happen and we're working very closely with parents themselves as well as the experts and I want to see progress much quicker than 10 years. BARCLAY And that was Ed Balls, economic secretary to the Treasury. Back to the You and Yours homepage The BBC is not responsible for external websites |
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