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	TX: 25.10.04 - Autism - Adult Services Ìý PRESENTER: WINIFRED ROBINSON Ìý
	THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.Ìý BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE 91Èȱ¬ CANNOT VOUCH FOR ITS COMPLETE ACCURACY. ROBINSON This month after a seven year legal battle the European Court ruled that the detention of a severely disabled man in a mental hospital was a breach of his human rights. The cases of thousands of people with learning disabilities in the UK may now have to be reviewed. The man at the centre of this case wasn't named in court but we'll call him John. He was unable to speak or to express his views in other way. He'd been placed in hospital by his elderly parents when he was 10. They died shortly afterwards and he spent 32 years on a psychiatric ward until he was discharged to paid carers. He blossomed with them until July 1997 when he became agitated on a trip to the day centre and had to be sedated by a doctor. John was then transferred back to the psychiatric hospital. He was detained for three and a half months and denied access to his carers. When they finally won visiting rights they found him with blood pouring from his head where he had hurt himself, his clothes were soiled and he had lost two stone in weight. It then took them another month and a half to persuade the hospital to release him back into their care. Ìý We'll be discussing the implications of the European Court's ruling and the broader question of care for adults with autism in a moment. But first, Angela Robson has been speaking to John's carers. Ìý FEMALE CARER This photograph was taken a couple of weeks before he was detained and as you can see he's very happy, he's just been out in the garden and it's only about 9 o'clock in the morning, he's just come in and for the first time in his life he's actually put his feet up on the sofa on his own. And he's so pleased with himself and that's why I took the photograph and I'm so glad I did because otherwise I wouldn't have had anything so immediately before the event. Ìý MALE CARER He came to live with us in 1994, after 32 years in Morris Park [phon.]. Morris Park [phon.] was a long-stay institution for adults, certainly with learning disabilities, maybe with some mental health problems and had about 700 odd inpatients and all those have either been moved on to other institutions or resettled in group homes. Ìý FEMALE CARER We'd gone shopping to get some food for his party that we were giving him that evening and we got back home, just before one, and the phone was ringing, it was his care manager to say that he'd been taken to hospital. Well we thought something awful had happened to him but it just turned out that he'd been having a difficult day and we thought well we could just go over and collect him. But we were told we couldn't go and visit and that he wouldn't be returning home. Ìý MALE CARER It was such a shock to find out that he had gone to the hospital at all. But once we'd found out that he'd been taken to the psychiatric unit by these three people we just suddenly thought well there's a waste of three years because he'll never come back from there. Ìý ROBSON How long was it before you saw him? Ìý FEMALE CARER Three and a half months. And that was only after the appeal court ruled that his detention was unlawful. Ìý ROBSON And when you saw him finally? Ìý FEMALE CARER I couldn't believe it, that it was him, couldn't believe it was him at all, I didn't recognise him at all, I didn't recognise the sight of him or the sound of him. Ìý ROBSON Did he recognise you? Ìý FEMALE CARER Yes, that was the only indication that I knew I had the right person. These photographs were taken the day after we first saw him again. Ìý ROBSON After three and a half months. Ìý FEMALE CARER Yes. Ìý ROBSON He's virtually unrecognisable. Ìý FEMALE CARER Well absolutely even to you. He's so thin, he's not wearing his own clothes, his - you can still see a trace of blood on the walls that they hadn't actually cleaned off from the day before when he was self-injuring because of his frustration at being in there. What he's actually doing is charging across the room and pushing himself off the wall and going back and doing it again. Ìý ROBSON He's covered in bruises. Ìý FEMALE CARER Yes. Ìý ROBSON He's got an injured nose, he's got blood pouring from his nose. Ìý FEMALE CARER Yes and look at his eyes they're completely lifeless. Look at his eyes now and look at his eyes there - just completely lifeless. Ìý MALE CARER We were helped to find a solicitor that specialised in mental health issues. Having met with them they gave us two choices, really was to have a judicial review as to whether it was actually lawful to do that to somebody who couldn't consent to treatment, attached to a habeas corpus because he was shut in the hospital. That being the fastest route, which is what we did because we were obviously getting more and more worried - this is September and we were more and more worried about the state that John was getting in. So they took it straight to the High Court, they wanted to hear it straightaway. We gave the hospital five days. And in the High Court action the judge said oh it was okay for - under the mental health rules for that to happen but did grant leave to appeal. And so a fortnight later it was in the appeal court and the appeal court actually decided that you couldn't do that to someone who couldn't consent, the only way you could keep someone in hospital was if they were detained under the Mental Health Act. And before we got home they'd sectioned him. Ìý Nevertheless having been sectioned it did actually give him automatic rights to visitors, to proper second opinions and a tribunal process which was immediately set in motion by John's solicitor. But the psychiatrists still hung on to him, still wouldn't discharge him and so a hospital director arranged for a manger to review the hearing over the head of the doctor and they discharged him in 10 minutes. Albeit that this has now taken until the beginning of December. The other legal action - the House of Lords hearing - only happened because the Department of Health didn't like the result from the appeal court and that it was going to affect so many people, they said 50,000 people. And so it was too much to give people in John's position their basic human rights, they decided it was far better to keep them locked up. Two judges at the House of Lords decided that he had been detained and it wasn't right but there was nothing in common law to say that that couldn't happen. Which is what we tried to have closed in the European Court. Ìý FEMALE CARER The awful thing is that all the trauma and the injuries and the deprivation that he suffered in there has no way of coming out into the open properly because he can't say what happened to him. Ìý MALE CARER Well two weeks ago after nearly six years the European Court did decide that John had been detained. To believe that he wasn't detained stretched credulity to breaking point and it is in fact a fairy tale - quoting from what had already been said in the House of Lords. Ìý FEMALE CARER It's certainly been a roller coaster but we've learned a lot along the way and what we've learnt has helped other people as well because we've had a lot of calls from other people who have had difficulties one way and another, not necessarily exactly the same as what has happened to John but certainly there are a lot of problems encountered by parents of people with disabilities as they get older because there doesn't seem to be any safeguards. Hopefully this ruling is going to make life easier for everyone. Ìý ROBINSON The disturbing case of John. Ìý Gavin Owen is adult campaigns officer at the National Autistic Society. Gavin, John is autistic and in the background to that piece you could hear him only making some faint noises. Could you describe for us how vulnerable some of the people with this condition may be? Ìý OWEN Well it's important to say first of all that autism does affect people - adults not just children. And it's a spectrum condition and not everyone has challenging behaviour but some adults that do have challenging behaviour it's because of their communication difficulties, so they can't express themselves and when they're angry or anxious or confused that's why they display this challenging behaviour. And a lot of the time it's when they're in the wrong setting - so when John was detained in the hospital that's why he could have been displaying the challenging behaviour. Ìý ROBINSON In his case he was repeatedly running into the wall because he was frustrated. As they said he's unable to speak. We heard at the beginning of this series that sometimes the smearing of faeces is a feature of autism in children and that can continue into adult life. Ìý OWEN Yeah again it's important to say that not everybody does have challenging behaviour and not all adults with autism will smear. And as it's a spectrum condition there are people with Asperger's Syndrome and when they first present themselves they can be perceived to be very articulate and it's not always evidence that they are different from other people. Ìý ROBINSON I'm really just trying to get a snapshot of the sort of care needs that some people might have. Ìý OWEN Yes and that's why a lot of adults with autism do need specialist residential care and not everybody but there are some people that do. Ìý ROBINSON Now John's is obviously an appalling case, how significant is that court ruling that his detention was a breach of his human rights? Ìý OWEN It's very significant and also at the moment there's the Mental Capacity Bill that's going through Parliament, I mean that is very significant for people who have communication difficulties, whether it's making a decision or communicating that decision as in John's case. The National Autistic Society is a member of the Making Decisions Alliance and they've been lobbying for mental capacity legislation for about 15 years. Ìý ROBINSON But what will it mean in practice then? Ìý OWEN Well what it will mean is that if somebody does have difficulty making a decision there will be safeguards put in place. So in John's case what could have happened is the carers go to the court of protection and say - John doesn't have the capacity to make this particular decision, we would like to make a decision on John's behalf in his best interests - and then the court of protection would appoint people as the deputy to make decisions on that person's behalf. Ìý ROBINSON How many adults in the UK with autism might be in a similar situation to the one in which John faced that is detained informally in a psychiatric unit, unable really to express their preferences either way? Ìý OWEN I heard in the interview there that 50,000 was mentioned, it's very difficult to put an actual amount on because there aren't actual figures for how people are placed - whether they're in a residential setting or they're in the home or they're living independently - but it will affect thousands of people. Ìý ROBINSON I'd like to bring Cathy Kerr into the discussion. She's assistant director for adult care services at Hertfordshire County Council. Could you tell us, first of all, what are people's legal rights to care and support if they are autistic from childhood and then into adulthood? Ìý KERR I think John's case highlights very well for us doesn't it that traditionally as long as 40 years ago people - people like John their main option was to be in a long stay hospital. The Mental Capacity Bill and in fact the High Court ruling in relation to John's case do demonstrate that we are making some very positive progress in making sure that people are supported in the community but also that the right safeguards are in place both whilst they're in childhood and also through to their adult lives. Ìý ROBINSON But what are your legal rights? If you were the parent of a child with autism who is going into adulthood what can you demand? Ìý KERR Well you can demand that you have the services - and essentially as a local authority we have a duty to assess the needs of every person who presents and somebody with needs such as John would be entitled to receive from the local authority a package of support to meet those needs. And there would be options for the family to take that further if they considered that those needs weren't being met. Ìý ROBINSON Well Mary Mitchell is here in the studio, she has a son, Leo, who is autistic, he is now 18. Mary, what is the reality then when your son goes beyond the point when he's entitled to care in a sense as part of his education? Ìý MITCHELL Well I consider I was quite lucky, I live in Hampshire, I live in Southampton, and we have a Hampshire Autistic Society and Leo currently is at a 16-19 year old further education unit called Aspin House, which is a small - it's just like an ordinary house really with a few other - there are 10 in all - eight day places and two - sorry eight weekly borders, as Leo is, and two day places. But I have to say listening to all this it's scary, I mean it is scary because your long - what you're thinking about is what's the future, where is Leo going to live, what's going to happen when I'm not around? That's the most scary thing for a parent. And I think in talking to other parents - and I'm a member of the Autistic Society in Hampshire - that more and more parents want to know that their child is going to be somewhere, that they're going to have a home, that they're going to have long term social activities and maybe even a job and all of that as any other person would expect to have and that's what's so scary because you just don't know whether that's going to be put in place or not. Ìý ROBINSON Now you're saying that Leo is in a centre which caters for people from the ages of 15-19, he is 18, what is going to happen to him when he's 19? Ìý MITCHELL Well that's what we're in discussions with exactly at the moment. What's happened is that another parent with a child the same age as Leo suggested that maybe they could move together with another girl - they're all at Aspin House, they're all the same age, they all know each other - what we're trying to do is to actually set up a house that they could move into as a group so it would take away one of the real worries which is sort of meeting new people and take away one of the stress factors. And we're working with the Hampshire Autistic Society who are really helping us and the idea is that a housing association would own the house and look after the house in the sense of building repairs and all that sort of thing and the Autistic Society would provide the staff, as they do now at Aspin, but this would be Leo's home for the rest of his life. Ìý ROBINSON So this is really a case of you and a couple of other parents having to knit your own care really? Ìý MITCHELL Well I mean we were pushing at an open door with the Autistic Society in Hampshire because they're very keen to use this as a blueprint because they can see that it will happen with lots and lots of other parents from now on and I'm sure we're not the first people in the country to do it. But I have to say that it does seem to meet precisely Leo's needs in the sense that he is - he is - I mean I think some people would say he's quite able but on the other hand I think he's incredibly vulnerable, I've just been out in Oxford Street with him just now and I thought I'd lost him in Selfridges and the panic that I go through of thinking he is just so vulnerable, he's very naïve, he's a lovely, lovely boy but he doesn't realise the dangers that there are and that will be him for life, he's always going to live with that. Ìý ROBINSON Well care at its best can offer a decent quality of life to people even with high levels of need. Lizzie, Paul and Richard, who are autistic, have just moved into a house of their own in Wellingborough in Northamptonshire. They're supported 24 hours a day by care staff working with them for much of the time on a one-to-one basis. Angela Winstanley manages the project for the National Autistic Society. Ìý WINSTANLEY We've had the house now open for about a month. It's in very much a community setting in a very normal street, a very normal house, it's a large enough house - five bedroomed accommodation for four people. We have a nice through lounge diner, a good sized kitchen with a farmhouse table in the middle. Each service user has their own bedroom space and a couple of the bathrooms are en suite. Ìý ACTUALITY - AT THE HOUSE Are you alright Paul? Ìý Yeah. Ìý WINSTANLEY Paul's a young man in his early twenties, he's been in the service now since we opened in 1997 in Northamptonshire. He was originally living as one of 12 - a group of 12 people and he's moved on now to live here in this service. He attends college, he has a very busy social life, he has a lot of interests. Ìý ACTUALITY - AT THE HOUSE So what's this film then, tell me? Ìý Garfield. I saw that - that's a new release. Ìý HUGHES I'm Joanna Hughes and I'm a senior practitioner for the community housing scheme in Northamptonshire. My job entails, as a senior practitioner, is I'm key working to the residents here and that just oversees making sure that they get to college okay, they go into the doctors, they go to the dentists, they go to opticians etc. and attending reviews with their parents and finding out ways of working with them. We're kind of in the background as much as possible encouraging them because we all want them to be independent and we all want them to have the opportunity to move on and move into a flat of their own. They might have someone that just pops in every now and then. Ìý ACTUALITY - AT THE HOUSE Hello Lizzie, how are you doing? Ìý Jigsaw. Ìý You're putting pieces together, you're good. Ìý HUGHES On this schedule we've got a list of symbols in the order of Lizzie's going to do them, so once she's finished her jigsaw the first thing on here is the symbol for cleaning, so Lizzie knows that she's got to get the cleaning stuff, she knows where to get them from and she's going to clean her bathroom and her toilet because they're dirty. Lizzie doesn't like doing that much so we always - often have a few complaints. And then the next one the symbol is choice, so that's Lizzie's free time. Then afterwards she's got her dinner symbol, then she'll have her meds as well at that time. And after that she's got to go and find her glasses, put them on and then we're all going out in the bus to the pub. Ìý WINSTANLEY The thinking behind it is about encouraging people into independent living as far as we can. There is staff support at all times - 24 hours a day - for this group of people but in this setting they'll have more of an opportunity than in a larger group setting for living their own lives, for being more independent and developing the skills around things like doing their own washing, ironing, cooking. Ìý ACTUALITY - AT THE HOUSE The tea's on. Ìý Jacket potato, bacon and cheese. And are you going to cook that yourself? Ìý I've don't think so. Ìý Can't you? Do you know what you need to do to cook it? Ìý I need to have staff support. Ìý You can have staff support but do you know what you need to do with the jacket potato - how to cook it? Ìý Yeah. Ìý Are you going to put it in the microwave or the oven? Ìý What's the best - microwave? Ìý The microwave's quicker. Ìý Yeah. Ìý Yeah? Ìý WINSTANLEY This sort of provision isn't necessarily right for all the individuals that we provide for. Some people have far more complex needs and therefore need a special and specific type of provision with a special and specific staffing level and staffing group. Some people find it very difficult to live with other people at all, so there is also a need for single person services that may indeed be staffed around the clock. There are difficulties in terms of funding, there are sometimes problems for people accessing the funding to get this sort of service that they require. There's certainly a need for more services for these people. There's certainly a need for more needs led service but with the government legislation as it is and with care standards changing as they are I believe the future is looking hopeful. Ìý HUGHES She's very good at hiding symbols and changing them around. You have to keep an eye on her, she'll sometimes come in and look at them and it's like - well I don't won't to go for a walk so I'll take that off, I'm not going to do my washing so I'll take that off and I'll hide them and put something like I want to do a jigsaw and I'm going to listen to my music. She's very good and then she'll deny all knowledge and you'll say - Lizzie, what's happened to them - she's like and she'll just shake her head like she's doing now and sign no I didn't touch them. See. Ìý ROBINSON Lizzie and her senior care worker Joanna Hughes ending that report. Ìý Gavin Owen from the National Autistic Society that is obviously a case of very good practice but it must cost a lot of money, it's very labour intensive. In an ideal world though you would like, I'm sure, all adults with autism to have access to that kind of care? Ìý OWEN Oh of course yes. That - to have access to that kind of care, Cathy was talking earlier about the community care assessment and adults need to have a community care assessment to assess their needs and what kind of support they will then receive. Ìý ROBINSON Now she said that is what you have a legal right to, what is happening in practice? Ìý OWEN Unfortunately an NAS survey in 2001 found that under 15% of adults with autism were actually receiving a community care assessment and so once you've had an assessment then it's very difficult to access appropriate support. Ìý ROBINSON Because sometimes it just doesn't exist? Ìý OWEN It doesn't exist and also autism, including Asperger's Syndrome, doesn't fit between - in learning disability or mental health. And so often a person is passed back and forward between the two teams and doesn't get any support whatsoever. Ìý ROBINSON So social services say it's not my problem, mental health services say it isn't my problem either? Ìý OWEN Yes. Ìý ROBINSON Cathy Kerr you said that people have this legal right to an assessment. In the authority that you work in - Hertfordshire - is there then enough care for everyone who is assessed? Ìý KERR I think the point that Gavin makes about people falling between learning disability and mental health services is an absolutely bang on point, it's absolutely right. And I think the position is, as the Wellingborough home suggested, things are getting better. We do know that within Hertfordshire, for example, we're doing some specific work at the moment to look at identifying both the numbers and the needs of people, both those with autism but also those with Asperger's - the high - what's called the high functioning autism group. And we are developing more services locally but we do know that currently there is not sufficient locally and currently we have - we've placed people as far away as Manchester and Cornwall which just gives you some idea of how far we're searching to find the right types of provision. I think the issue there is about us growing our own local services, drawing on the expertise of organisations like the National Autistic Society, so that we do have staff that are trained in the right way, that are able to support these individuals, so that they are able to lead a fulfilled life as an adult. Ìý ROBINSON Mary Mitchell, your son Leo, who is autistic, is now 19, you're going to try to set up your own home for him. What are your fears for his future? Ìý MITCHELL Well I just want this to come off because there isn't a plan B really, because I believe he's entitled to live a life, he's interested in tall buildings and he's interested in the names of MPs and all sorts of things because we watch the news a lot and I want that to continue. And it's really scary to think that things shouldn't be in place. I wanted to pick up one of the things that was said about this high functioning business. To me if you're autistic you are incredibly vulnerable, I don't care whether you've got Asperger's and you've got a particular gift at doing something, for me, I mean some people would class Leo as being high functioning, but he is the most vulnerable person in society because anybody could take advantage of him, he cannot understand about people being unkind or people sort of wanting to exploit his position and I think autism in itself is an incredibly severe disability and I think that's what needs to be recognised. And the other thing I wanted to say is that I'm an articulate person and I think my experience is that part of the problem is that a lot of other parents aren't perhaps as bolshy or asking questions as I might be and I worry that unless you're kind of ringing up social services a lot, ringing up the Autistic Society kind of trying to bring it all together then it doesn't happen. Ìý OWEN Yeah I'd just like to emphasise what Mary said then. I was at a conference on Thursday and I heard a parent talking about trying to gain education provision and how emotionally draining it was and how she'd had to fight so hard and that's in education settings ... Ìý ROBINSON For children in fact. Ìý OWEN Yeah that know more about autism, so you can imagine how difficult it is for parents of adults or adults themselves trying to secure the support, it is tremendously draining. Ìý ROBINSON And the reality, as revealed by your own survey which was quite extensive, is that in fact where are most of the adults with autism - they are still with their parents. So in that sense it's a time bomb waiting to explode. Ìý OWEN They are - at least 50% are living in the family home with their parents. And as Mary said earlier a lot of people are worried at what is going to happen to their sons or daughter when the parents aren't around. Ìý MITCHELL And for an autistic person for that to happen I think would be terribly, terribly hard for them to be - suddenly find that a parent had died and they had to move then, the stress and the unhappiness that that would cause. That's why I want Leo to move while he's young enough to understand and for him to be settled before I'm not around. Ìý ROBINSON Well there we have to leave the discussion. Gavin Owen, Cathy Kerr, Mary Mitchell thank you all very much. 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