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 | You and Yours - Transcript ´óÏó´«Ã½ Radio 4 |
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| TX: 17.09.03 – AUDIT COMMISSION REPORT CONDEMNS THE QUALITY OF SERVICES FOR DISABLED CHILDREN |
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| PRESENTER: LIZ BARCLAY BARCLAY An investigation by the Audit Commission into the provision of services for disabled children has produced a damning report and there's no doubt that many children are suffering. There is too little support, too late, and chasing what help there is requires persistence, stamina and a great deal of luck. In short, the Commission concludes, there is a lottery of provision provided by a jigsaw puzzle of services. Cheryl Armitage has been speaking to Julie Willers from Essex, whose 10-year-old daughter Lucy has cerebral palsy. For her these findings ring all too true. WILLERS What goes in there? Food. ARMITAGE Your food goes in there does it? WILLERS What do you say about it? Yuck? [Laughter] Lucy really takes 24 hour care. She's fed by a gastrostomy tube into her stomach and she's on the pump that feeds her all night long. That quite frequently blocks or if she turns over in her sleep she'll lay on the tube and the pump will alarm, so it means getting up quite often in the night. She generally wakes up about half past seven in the morning and it's a round of drugs and flushing the tube out, so it doesn't block again. Get her dressed, do all her own personal care - washing her, teeth, hair - and that takes quite a long time because she's unable to assist you really in any of that. ARMITAGE And what sort of support have you had from local services? WILLERS Very little. We get three hours a week at the moment and that's been so for the last 18 months and that's three lots of one hour - Monday, Tuesday and Wednesday mornings to help me get her ready for school. And I don't really understand what the difference is between Monday to Wednesday or Thursday and Friday. And also during the summer holidays that - or any of the school holidays - that stops. And there have been periods of time when the children have gone into foster care because it is too demanding to do it 52 weeks a year every day. ARMITAGE Have you found that you've had to go to different places for different types of help and that they don't join up? WILLERS More often than not we just get told no because her needs are too much. It's not a case of the worst off you are the more help you'll get, I think it actually has become now that the easier you are to deal with you'll get more services because Lucy has such a lot of needs that we get palmed off with this is a medical need and not a social need but the medical services won't come and help you, they won't sit with us for two hours so I can go to Tesco or shopping. ARMITAGE Do you have your own social worker, do you have someone who can sort of liaise for you? WILLERS Yes I do have a social worker. They change very frequently which means that you end up going over the same ground again and again and again. I think they're grossly understaffed, our local team - I believe there's supposed to be four social workers on the children with special needs team, at the moment there's one and that's not uncommon. ARMITAGE How has school worked out for her? WILLERS Lucy went to a special school until she was six and she now goes to mainstream. It only works because the assistant - the assistant that she has is very, very dedicated and I think does a lot over and above what she really has to. Lucy gets two nights a month now at respite, that costs £643 a night. So if I leave my child and I don't look after her that costs a lot more than putting some services into my home to help us stay together. And lots of the families the dads leave because the pressure is enormous and it does damage relationships. ARMITAGE Did that happen to you? WILLERS Yes. It is too hard, there's no time left for a relationship at all. ARMITAGE But do you feel that there's something the government could do apart from cash, I mean do you think that it would help rather than having a local authority like Thurrock looking after yours and Lucy's needs that there should be some sort of national agency, that the whole thing should be pulled together? WILLERS The services are very different, depending on where you live. I do think that that should be paralleled across the country rather than it being a matter of where you live and what sort of care you're allowed or respite you're allowed. ARMITAGE Are you pleased that they've done this report? WILLERS Yes I am very. Most of the families that I know with a disabled child spend most of their life in crisis I think because we just manage to survive, it isn't living, it is surviving. And it's just very, very lonely and isolating and I think you're abused really for loving your child. BARCLAY That was Julie Willers Well joining us now is Morag McSween from the Audit Commission, that drew up the report. Is this typical of the experiences? MCSWEEN Sadly it's extremely typical, a lot of the things that Cheryl was saying there strike really strong chords with the families that we spoke to. Now our research is the first time that anyone has looked at what it means for the whole family - parents, brothers, sisters and the child - to have a disabled child. And what we found is that it's a lottery, it depends where you live, it depends really how confident and able parents are to push. This maze of services is fragmented, it confuses and frustrates parents and children often get too little too late. Everywhere we went we found at least one brilliant person, like Lucy's classroom assistant, we found that everywhere and we found good services everywhere but we didn't find secure and comprehensive provision anywhere we went. BARCLAY And is this poor state of affairs all down to fragmentation of services? MCSWEEN Fragmentation of services is a big issue, I mean one of the things we wanted to talk service providers about was what services are there in your local area and we were pretty surprised actually to find that in many cases they didn't know. For one example we found an area where there were 40 different after school schemes that would accept disabled children but nobody knew that there were 40 and nobody knew whether 20 which were better would have been better than 40. BARCLAY So it sounds as if it needs some sort of leadership, some of sort of national agency, would you take it our of the hands of local providers and make it an agency if you could? MCSWEEN We definitely would not recommend that because one of the things that we need to be aware of is that local circumstances are very different. What we are recommending is that local services get together, they find out, if they don't already know, how many disabled children live in their area, they find out what those children need and they find out what they're already providing and together they make sure that services are joined up and they're the right services at the right time. BARCLAY So it's more a matter of distribution of services rather than the provision of services? MCSWEEN It's more a matter of actually making sure that the services you provide are based on actual knowledge of how many children live in your area and what they need rather than historically we have always provided good learning disability services. One of the crucial messages that we are saying is talk to parents, talk to children and get to know what your local area needs. And it is going to vary from area to area. BARCLAY Also here is Margaret Hodge, the newly appointed minister for children. Why are disabled children simply not being a priority for social services and other service providers here? HODGE I don't think it's fair to say they haven't been a priority and what I would say, having listened both to Cheryl and to Morag, I agree with much of what they've said, however, things are better than they were. We've got a long, long way to go but things are better. For example, Lucy is now in a mainstream school, now that may be 5, 10 years ago wouldn't have happened and that's an advance, we've got to do much more, but that's an advance. BARCLAY But it's fight, fight, fight all the way for the parents and each child almost needs an advocate who can deliver what that child needs, when it needs it and pool together all those services, ideally for that child. HODGE I agree with that and one of the proposals that we've put forward in the Green Paper on the future of children's services is that we should try and build the services around the needs of the child, which is very much what both your contributors talked about, rather than build them around the professional side, be it a social services, learning disability or be it health or be it education. So what we're proposing - and we've got the first 35 of these running as pilots across the country - are what we call Children's Trusts, where we would bring together all the money that is spent on disabled children and other children from the health service, from the social care service and from education, pool it together, get the professionals all sitting around the table together, commissioning, planning the services together and have one lead - one lead professional - not a lot of professionals in different services - with overarching responsibility for that child. That's the bringing together at a local level that Morag talked about, which we think is the right way forward. We are on the case, if you see what I mean, but we have got a long way to go, I do accept that. BARCLAY But the problem also, which was what was pointed out in the report, is that there is huge understaffing and until that is addressed you won't be able to pool things together. HODGE No and one of the key other areas that we addressed in our Green Paper last week was lifting the morale and self-esteem of those that - of the children's workforce across the board and doing a huge amount about both recruiting and retaining good people, frontline social care work, working with children across the [indistinct word] and certainly with disabled children. Can I just point one thing for example? I think it was Cheryl who said she - her child - that her child is taken away, goes off - goes for respite care at £643 a night and she quite rightly said well that's crazy, if I had more money spent on supporting me in the home the child would be happy, she would be happier and probably we'd spend less money. Now sorting that sort of craziness out is what the children's trusts are all about, so you don't just get respite care funded by one group and support for Cheryl in the home founded by another, you get the needs of the child centre and the services built round the needs of the child. BARCLAY Margaret Hodge, Morag McSween thank you both very much indeed. Back to the You and Yours homepage The ´óÏó´«Ã½ is not responsible for external websites |
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