Tuesday, 26 January 2010 UKCoD Conference: The Personalisation Agenda SUSAN DANIELS: Okay, just before I start to do a welcome, just to explain the communication arrangements. The interpreter is on this side. For anybody who wants to follow the interpreter, please, would you move. The Palantypist is on that side. Okay, firstly I would like to say a very warm welcome to everybody who has come to the UKCOD conference on personalisation, a very important issue for all of us in this room, and I would like to thank you for coming. My role today is I'm chair of the UK council on deafness. All I am going to do is introduce the chair for today who is John, who is director of -- in Greenwich, who will be making sure that today runs smoothly and everybody keeps to time. He is going to be ruthless chair. Very warm welcome and thank you for joining us. JOHN NAWROCKYI: Good morning everybody. It's a good day and good to see so many people here. The reason I have been asked to chair this session is that I am the co-chair of the disabilities and sensory impairment network for the association of directors of adult Social Services, and actually in the world of personalisation and specialist services is something we need to develop our thinking on, so I'm delighted to be taking part in today and looking forward to the learning going forward for all of us. Just before we start, the usual hospitality issues. We have toilets in the main hall, ladies and gentlemen. You will have seen those this morning 1 already. There is no fire drill planned today, so if there is a fire alarm sounding it will be a continuous tone for those that can hear it. We'll make it clear that the alarm has sounded. We'll then evacuate to the right, the left, down the stairs and to the CORONET pub, that will be the collection point outside. So I think that's all I need to say in terms of the arrangements for the day. The first presentation is started by Martin Cattermole from the Department of Health. He works in the care services improvement partnership and is currently a project lead on personalisation for the department of health. We're also joined by a team from Oldham. Michael Collins uses deaf blind services in Oldham, Mick Flatley is a service development manager within Oldham Social Services, and Scott Hall is Michael's person assistant. So thanks for taking part in the presentation and we look forward to that. It's exactly an hour -- I have been told by Susan to be ruthless. We will have 15 to 20 minutes for Martin's presentation, up to half an hour for Scott's and the team, and then we will have 10/15 minutes for questions and answers. And whilst we don't have a speaker from the local authority on the agenda, I will be happy from a question arises to talk from a council perspective and we'll see how that works during the day. So thank you and over to Martin for the first session. MARTIN CATTERMOLE: Thank you very much for inviting me to come and speak. I will stand up to point at the screen as well. Very pleased to be here and spend a bit of time talking to you about putting people first, which is the -- I suppose one of the biggest policy changes that has happened in Social Services for quite some time. I'm going to spend about 15 minutes explaining a bit about 2 that and what it is that the government and the councils are trying to do. We don't think that we have all the answers at all, particularly when it comes down to how this is all going to work for deaf people and other people who need specific types of help, so we're here as much as anything else to hear from you, from your experiences and for people who work in councils who are here too. Michael is going to tell you a bit about his experiences as someone who does have a personal budget, but this policy isn't all about personal budgets. Michael wanted me to tell that you he's a Manchester United supporter -- what a shame. My son's Arsenal supporter. On the way down I got to see Highbury before it got knocked down, which is very inviting for him. Right, so just coming back to putting people first. Just before we go into it, just some things that it's not about. It's not about everybody being given money as a direct payment. That's not actually what the policy says, that's a bit of a myth that's grown up. It's not about getting rid of the advice -- the specialist advice or equipment services, for example for deaf people. Though it perhaps does mean perhaps thinking a bit differently about what those services are there to do. I suppose the third thing to say and why Michael is here is these changes aren't just something the government dreamed up, they have been led really from the start by disabled people and their families and we'll say a bit more about that as we go along. So if -- I'll do the slides. Start off with, I suppose why we've started bringing about these changes and what it is people have been telling us about how Social Services work at the moment. So what is it they have been saying? Firstly about what's the kind of results of the way things work at the moment 3 for people. I'm talking here about everybody, older people and disabled people as a policy for all adults. Firstly people tell us that there's too little help or advice before people reach a crisis point and this particularly applies for older people, it applies to all of us in other words when we get to that stage in life, and linked to that I suppose not really enough help for families. Actually just to be clear about it, families are the mainstay of actually providing the help and support that everybody needs, Social Services only provide a part of that for certain groups of people. Then in terms of what actually does get offered, we have been fitting people into a very limited range of services. There's a lot of money spent on Social Services for adults in England. Of that the vast majority gets spent on residential care, home care, and certain other services such as day centres, and that takes up most of the money. We will come onto direct payments in a minute, but some people have benefited from direct payments. For those people what they have told us is they haven't yet been made flexible enough. There have been too many rules and constraints over how people use direct payments. Linked to that, for people who take up direct payments, what they say is important is to have user led support services. So good sources of help and advice on how you can arrange help. I think an important point that has been made a lot is that people's expectations are changing. What older people have had in the past isn't necessarily what people will want in the future. Finally, in terms of impacts on people, the number of people being helped has begun to shrink even though there's actually more people who perhaps may 4 need help and that's because councils have felt themselves forced to begin to tighten what we call their eligibility criteria. We can only help you if you really, really are in a bad way. As a way of trying to manage costs. Just to say a couple more things about the way the money is spent, which is actually really important. As we know there is going to be more need in the future, more people other older people in particular, but also more young disabled adults. There's more people with learning disabilities for example. So costs are going up. In terms of how councils spend the money, in many cases a very large share of the money is spent on residential care for really quite a small number of people. It varies quite a lot. There are councils who spend as much as 70 or 80 per cent of their social care budget on residential care. That doesn't mean very much for lots and lots of other people. I think in terms of also what we've learnt is until now not very much has money has been spent on helping people at an early enough stage before they actually need ongoing services and providing advice and information for what Social Services called self funders, which is actually most people in the community who actually have enough money or savings they are not entitled to free help. Of course that may change, it has been announced there may be help for more people. Just to check, because this is not all about me talking to you. How many people have direct experience of Social Services either for themselves or a close relative they have been involved in trying to organise Social Services or help? That's usually about half the people in the room. And how much of that sort of people feel that corresponds -- some of that 5 corresponds with their own experience of how things work? Particularly the bit about it being mainly families who are actually people that you might help? You can tell us later what your own experiences are. Okay, now we're just going to spend some time talking about where this policy has come from, because this is quite important and we have this picture which might work. We'll spend a bit of time on it. We are calling it -- it's a bit like the Bayeux Tapestry to explain what this policy is about and where it has come from. It's about the move from the medical model of services to what's called the social model which most of you will know all about. It is just this two halves of the diagram. The top half is about what's happened in the wider world outside government, particularly what disabled people have been doing. We've got a problem with the diagram? Can't see on that side of the room. I'm going to talk you through some parts of it, okay, and then we will have a slide. It's a problem with this room is it's very hard to see the slides from this room. FROM THE FLOOR: It's the interpreter right in the way! MARTIN CATTERMOLE: I appreciate you may not all be able to see that. Okay. Right, on the left we start off with the second world war. We're going to talk about some more recent things. Firstly in 1979 there was something called project 81, which is underneath where it says the pensions movement. And that was a group of people in Hampshire disabled people living in a residential care home in 1979 and they decided by 1981 they won't be living there any more, formed an escape committee essentially. Their wish was they said there's money being spent on our residential home, we would like to have control over that money and spend it differently. They succeeded in that that led to -- it wasn't 6 any kind of direct payment in those days, but they made a way for local services to organise that and fairly soon after that in 1984, some census for independent living started off. Following on that, one in Hampshire and one in Derbyshire. That was one the important things that started people down this road. Down the bottom we've got some of the things that the government started to do around this. So I am going to point out one thing. In 1988, the government set up something called, "The independent living fund" which some disabled people are able to use to organise support. And in 1998 -- I will move the diagram along a bit now -- direct payments began to be introduced. In other words what people in Hampshire had asked for actually became something which councils were officially allowed to do. So just there's a lot more on the diagram, but just to show that the ideas for this didn't come originally from government, the government responded to them. If we go down the bottom, in 2003, something called "in control" started work, initially mainly with people with learning disabilities about developing some ideas called self directed support. So not just about money, but about changing the way that support was organised. I will say a bit more about that later on. In 2005 the government started the individual budget pilots. Professor David Challis, is he going to be speaking today? He is going to say more about that pilot project he was involved in, evaluating the results of it to see whether these ideas could be the basis for Social Services in the future. I think finally in 2007, down the bottom, the government announced "putting people first". Let's find it. Yes, there you are. And documents around this, 7 which basically was an agreement. It wasn't someone telling councils what to do, it was an agreement between government not just the Department of Health, the Department of Work and Pensions, other government departments and Social Services in association with the directors of adult Social Services all signed that document saying: here are the things we are going to put in place. I am going to say more in a minute about what that is all about. Not just about personal budgets. Okay. Just have a little pause. So I have just written on this slide. I'm hoping people might be able to get the slides afterwards, is that possible? Is it possible for the slides to go to people? So you will have the dates I have talked about are written on these slides essentially. This is a diagram, a bit like a kind of dart board, which we've produced to help councils explain putting people first policy, and the different parts of it. So I am going to go round it starting on the top left, because there are four parts to this. The first part says: universal services. What that means is that part of the policy is for councils to make the services that everybody uses, so housing, for example, which is important to many people, but other things that councils do, leisure, so on and so forth, more easily accessible and available to, if you like, the whole population, including old and disabled people. One thing we know that has been happening is people have relied on Social Services a lot because actually other services are not available to them, transport, housing, leisure and so on. But also under universal services is the idea that there is something, I suppose, for everybody, and that -- one part of that is ensuring there's better information, advice and advocacy for older and disabled people and their 8 families. So regardless of how much money they have or not just waiting until people -- there is a crisis, there's going to be help to help them work their way around the system. Part of that was the policy that there should be in every area a user lead organisation based on that idea of the centre for independent living that started quite some time ago. Part of the policy says that in every area by 2010 there should be either a new user lead organisation or the council will be working with existing organisations like some of you in the room to do that. Moving around now, the next part is called: early intervention and prevention. The first part watt big and available to everybody; this is actually more aimed at specific people who are approaching a stage where if they don't get some help they will be at risk of going into residential care, hospital, or perhaps they have already been into hospital. And what we've discovered is that actually this particularly applies to older people, people used to just -- basically people used to have a fall or some other problem, crisis, end up in hospital, go into residential care. We made a discovery that older people like everybody else can actually get better and recover independence. So this policy includes things like having the right kind of equipment provided in people's houses, so they don't have the fall or crisis in the first place and if they do they can get help quick live. That's very different to deaf people having adequate services. Early intervention also means things like having intensive help to help people recover and get back on their feet. The evidence we have got so far is that for older people, actually roughly speaking half of the people who have been into hospital, if they're given the right kind of help when they come out 9 don't then need ongoing help for quite some time, at least two years. More evidence came out on this last week, a project called POPS, which covered lots of evidence about the benefits for people and the potential savings for councils if they get this right. This is actually one the big opportunities for not wasting money. Down to the bottom right, this is called choice and control. Various people pointed out choice and control should be about everything. Absolutely right. A policy that says particularly about people who do go on to need ongoing help from Social Services. The policy says that should be through a personal budget in future. So we're part way through bringing this in. And personal budgets we're going to say a bit more about what they mean. That's linked to the idea of self directed support where people can get choice and control over how the money is spent rather than simply taking the services that are there. The final bit but a quite important, but a bit fuzzier is called social capital. What it means is people not just relying essentially on having a paid service. A good example would be actually helping people getting into reemployment is a key way of people becoming enabled to essentially look after themselves, actually have -- not rely on the services. It's particularly relevant to people with learning difficulties who have spent many years living in services or going to day centres when in fact if they were more involved in the wider world they would actually need less help. But it's also about helping people making them aware what's available in their community -- the use of voluntary organisations and other forms of support. So that diagram is just intended to help simplify and make clear there's 10 more than one part to this policy. We've got a bit of a jargon buster, because words are quite confusing, particularly "personalisation" which is a word that has been used a lot. Personalisation doesn't mean everyone having a personal budget or direct payment, it's about -- the words we have used here, which are very small on this slide, I apologise -- is: a process by way state provided services could be adapted to suit you. So that could equally be about making transport accessible for example. About social care is means everyone having choice and control over the way their support is organised. Self direct support, we have a diagram I will come back to. Individual budgets was what the government piloted in that project a few years ago and that was the idea that people who were going to get help from Social Services would be told how much money they had available. There would be a pot of money which could bring together perhaps money from other sources. So for example the independent living fund or money from the health service. David Challis will tell you more about that. That proved difficult to achieve, to bring that money together, so we've gone ahead with personal budgets which are just about Social Services money. So there are some people who get help from the INF for example still having problems they tell us about that most people just get money from Social Services. Then finally, direct payments are where people choose to take that money in the form of cash into their own bank account, which they use to employ personal assistants or for other persons. That's only one option if you have a personal budget, you still have the council arrange the services for you. Just what's different about it and why do we think this is the right thing 11 to do. This is kind of a document written by the social care institute of excellence explaining what personalisation means. It says it means: "Thinking about care and support in a different way starting with people as individuals looking at their preferences and aspirations." So it's about putting them at the centre of the process rather than saying: you have a need, we can meet that by providing this service essentially. It means being much more open to looking at what the outcomes are that people want to achieve. And that is actually a very, very big change for Social Services. It's not something that never happened before. A lot of social workers would say it's actually what they thought social work was about, about helping people work out how to manage their own situations to achieve what they wanted. But it isn't quite what happens for most people. Because we have Michael here who is going to tell you about this, I am just going to say briefly a bit more about self directed support and how that is intended to work. Bear in mind this is only for people who are getting ongoing help from Social Services, so that might noting many people here. It starts off with a process which is sometimes called "self assessment". It can never be totally self assessment, because councils have a legal duty to understand people's needs, it's not about you going off and doing it on your own. That leads to an understanding of what a person's needs are and then the council actually has to work out how much money, roughly speaking --'s why there's a pound sign in there -- they're able to offer that person to arrange support. Turning things on its head. We can never find out how much money is actually being spent. The second stage is getting more help and advice to actually plan support 12 and perhaps do things in a different way from what's been traditionally done. Third step says agree the plan. The council has a legal duty to ensure that your needs are going to be met if you're eligible for Social Services. So the council still has to check I suppose that the plan is actually right and it's not going to cause unacceptable risks, for example, or that the money that is going to be spent is going to be spent in an acceptable way. The fourth and fifth stage are about having help to arrange support. When we go back to the beginning, that he is one the things people told us wasn't always done well, people needed more help at that stage to either get the right kind of service or to find people to be personal assistants or to do other things. At the end -- skip over the bit -- the idea is that the important stage is after some time has actually been spent having the thought plan running, the council is going to report back as to whether that's working or not and whether the outcomes have been achieved. So when we talk about self directed support there's a specific process which actually means a change to the way councils actually operate. That's one the things we have been working with them on. Here's a sort of -- one the examples from the individual budget pilot. In this case somebody with mental health problems. A group of people who perhaps very often haven't had very much help from Social Services, mainly relied on the health service. Just to give you an idea of the different way it can work. This person says: "I bought a kite, a bike and outdoor clothing for outdoor activities, I am on my bike nearly every day -- this is because I feel more confident, which is 13 mainly down to being a lot fitter." This is a person who had been involved with services for many years, including day centre type services but also NHS mental health in-patient services: "my mental health has improved, I'm doing much more. Without individual budgets I would probably just have struggled on as I was doing last year. It has given me a kick start. I'm feeling alive." We have got a series of videos where people in different situations talk about their experience of personal budgets, but that's an example of how different it is from simply employing a member of staff. Just a bit about the evidence on personal budgets. David Challis will talk to you about the individual budget pilot study. That is only one the research that has been done. The institute of excellence have done a review looking at the personal budgets and evidence from different countries. What that basically says is it's not a magic cure. Given it is being done well and the right level of support, people and their families are very positive about how this can work and change in their lives, like the last person there. But some people, particularly older people and people who have complex needs, may need more time and support. For councils they may need to spend more time than they have been used to arranging support for people. And this particular applies, not everybody wants a direct payment, so we have to find ways to make things work for people who don't want a direct payment. I think importantly though, one the other conclusions was the support and advice can be more successful when it's actually independent of services. Coming back to the idea of a voluntary organisations and user lead organisations 14 being involved in giving people advice and helping them arrange support. That's probably quite important. Okay, I have gone on probably too long. Important things: not about everybody having a direct payment; not about taking away services that provide information and advice and equipment and giving that money to people. That's not the policy. An important part of the policy is about mainstream services and making them work better for everybody, and then ensuring there's good work with local user lead organisations, which in this case includes deaf people's organisations, or organisations working well with deaf people. So I suppose the key thing, personal budgets, which we are going to hear more about, is only part of the policy. I am going to stop there. There are some other slides, because we have put some examples on them. There are films which explain the policy geared mainly for councils, but useful perhaps for other people too, some individual stories about personal budgets, a lot of information for councils on how to make changes work, and information from Sky, the example that I gave you. I think in a practical sense, how does this work for ourselves and for our families in control have written useful guides, the essential guide to help families arrange support for a relative. We'll stop there. JOHN NAWROCKYI: Thank you, Martin. Thanks for that overview -- we're going to go straight on actually. I am sure you have several questions arising from that presentation. If you can just park them for half an hour and we'll hear of Michael's experiences. So we'll hand over to Michael, Scott and Mick to share some thinking from Oldham. NEW SPEAKER: Good morning everyone. You know my name, it's Michael, from 15 Oldham. I'm 27 years old. And I was born profoundly deaf -- by the age of 16 I had a problem with (inaudible). Due to a. As a child I didn't sign very much. I went to a school called Narefield primary school. Most of the students there were all hearing. So my mother and father didn't really -- and we went to a centre to learn sign language, very, very basic sign language and I was only learning very small amounts of communication skills, very basic signs. I wasn't yet BSL at all. But then I moved to another school in BOLTON called SHARPLES school. Very interesting, however, because there was about 30 deaf children there. About 500 or 600 hearing people. With the signing I wasn't picking up straight away, but I became really interested in that and was learning about the sign language. Then with the BSL, I was improving with the BSL, learning is, absorbing it, improving all the time. So I didn't know there was an eye condition developing, I just carried on in the school in Bolton and carried on as I was. Then we went on a trip to France, to Paris. There was a group of students, about 34 of us, all deaf. We went travelling around Paris and we were really enjoying ourselves. We had two communicators with two interpreters. So we were watching the interpreters and they were giving us lots of information about Paris, then we went right to the top of the Eiffel Tower. Something happened. I couldn't understand what was happening, I couldn't see the lectures that the interpreters were doing, it just was going all over my head and became really quite disorientated and didn't know what was going on. Somebody recognised what was happening. Saw that I couldn't follow everything and was becoming quite anxious, didn't know what was happening. So this communicator grabbed hold of my wrist and started signing whilst holding my 16 wrists and I could understand what they were saying, the communication was really clear, really smooth. And it was called "hands on BSL" and I quite liked that, it gave me confidence. So he took me down to the bottom of the tower and I calmed down. I was thinking about how I had just been communicated to. Because before I was missing a lot of communication without knowing about it, things that other people were having to go over a bit to get the information I needed, but I was missing lots. There was last problem with my mobility when I was walking. You know, I wasn't always walking perhaps in a straight line or I was a bit, you know, going a bit all over the place. I thought I needed to be guided and it was much, much quicker for me when I was actually guided and I was happy with that. Then it dawned on me all of a sudden that I actually was a deaf blind person, I had become deaf blind. So when I went back home from France, I explained to my mother and father what had happened in Paris and that I needed to be guided and to have hands on communication. So what happened next was I went to the Oldham deaf club to see all my friends and found that with my friends not being able to give me that level of communication, they withdrew a little bit from me. I didn't understand that really. One person in my group of friends recognised my needs and gave me a lot more, came and talked to me and tried to explain to other people about deaf blindness and my needs with the hands on communication and they were really interested what I needed and were discussing things with me to try and help support me. With that my confidence grew and I was quite happy about that. So this friend also recognised and knew a bit about Social Services and 17 talked to me about direct payments and said, "Why don't you go and ask the social worker about direct payments". So I went to Social Services and discussed that with them. They gave me full information and I considered it for a while. I thoughtful: that's possibly quite an easy thing to do I'll give it a try. So the social worker gave me full information, explained everything to me, told in me what I needed to do, did an assessment on me and then I received a direct payment which gave me 12 hours a week, which I use between two PAs. I went on that for a bit, it was okay. I had it for three or four years. But I found that wasn't enough for me, I wasn't getting enough support, I needed more hours. So I went back and discussed with them about having more hours. So they talked to me then about the possibility of having an individual budget. I thought that might be a better way for me, because I could choose then, it was more my choice how to spend my money. So I agreed to try it. Again they gave me full information, explained everything, and with the individual budget gave me 18 hours a week with my PA. Which was much, much better for me. I really enjoyed that. I felt more in control with that. I discussed with my mum and my mum agreed to manage my finances for me, do the books and everything. Everything works well and I'm really, really happy with that. It's about six years I have had an individual budget and I've really enjoyed having that. So, the individual budget has to be able to give me access to information, help with my mobility and help with my communication needs. Before I used to have many, many accidents, because there was no help there for me, my confidence was really quite low, I needed support, help and a guide. I tried with a long cane, but it didn't feel right, I needed a person to guide me so I was missing 18 things, things were going over my head. My PAs gave me much more confident, I found it better to have human support there to help when I needed it. Also my three PAs that I have are all my friends, they are people who know me well. They gave me the confidence because they know me so well, my background and where I am from, they have experience of my culture. And the PAs are all quite happy to work with me, they want to work with me. So what I am thinking about for the future is I want to learn about being independent and living on my own, being more in control of everything. I am hoping that when I am trying to become more independent that I might be able to apply for some extra hours for support. Before I lived with my mother and father and they were doing everything for me, I was only doing very little things on my own. Somebody would help with my mail, with the gas bills, with the cooking. All access to information needs. So with that extra support I became more positive and independent. FROM THE FLOOR: , Michael, you said you get 15 hours a week. It seems about two hours a day. MICHAEL COLLINS: No, it's 18. FROM THE FLOOR: So two and a half hours a day roughly, and A) is it enough, and B) can you tell us what rate per hour your budget allows you to pay people? MICHAEL COLLINS: Just answering the first part of the question first. The allocation of the hours is up to me. I can choose, for example, to have one of my three PAs come in for a full day three days a week, or I can use them for 19 three hours one morning and then three hours someone else most of the time. So it's very much in my control. For example, if I'm watching TV, I'm watching the football, I can't not have access to that, you know? Sometimes at weekends I might be needed as well, sometimes I might be needed on a Tuesday, so it's very much in my hands. There are other PAs who I use specifically for going shopping for food and another PA I might enjoy their company when I'm travelling or socialising. So again it's certainly all in my hands. Just a question from Scott there about what about using PAs at holiday times in different ways. FROM THE FLOOR: , can you tell us how much per hour your budget allows you to use? THE INTERPRETER: How much you are allowed to spend per hour? FROM THE FLOOR: Yes. MICHAEL COLLINS: I don't know. Although the response has come from Mick. Just clarifying per hour. How much do you pay per hour? I did pay by the hour, yes. And it seems £10 is the answer. JOHN NAWROCKYI: Thank you for the question. Thank you, Michael. Like to use the microphone? FROM THE FLOOR: Hi, I work for the national deaf children's society. About six years ago I think we met. How old are you? Did we not meet six years ago? Just to go back to what you said six years ago, how old would you have been? 21. So you're 21 now, so you were 15. And how many hours were you getting a week back then when you were 15? MICHAEL COLLINS: Just to clarify the question, 16 years ago I'm not sure. Mum 20 dealt with all the arrangements back then. I had a PA partially during the week, but certainly the money was dealt with by my mother at the time, I'm not fully aware of what was going on then, but I know that the hourly rate goes up now and has done since. So I wonder do you wish you had more? Certainly if I was living independently, yes. Now I am independent, I would wish to have more hours. The first time I got involved in this journey, it was very much a suck it and see type situation, see how many hours I do get to use, see how many hours I require, but you can always go back as indeed I did, you can go back and ask for an increase in hours, and they are certainly quite prepared to do that if you are able to justify the need. FROM THE FLOOR: Thank you. FROM THE FLOOR: Hello, my name is Denise Scott. I'm the team manager for the local authority in Nottingham shire. We have been quite successful in getting direct payments and personal budgets for definite service users. The problem we have is getting the support staff with the appropriate skill. I am sure there are people who will recognise that. I think Michael's been quite lucky in having friends there to do that for him, but we have people waiting to employ people. So I think the support service assist that are around for local authorities need to recognise that. It's not really a question but a statement, I suppose really. Thank you. JOHN NAWROCKYI: It's a statement we can't agree with actually. One. Freedoms of individual budgets is there's far less constraints in the choice of personal assistant and with that goes some risks we need to build into people's personal support plans, but yes we do need to provide those alternative services. I 21 don't know if Michael has any observations on that. Mick, would you like to say something on that? MICK FLATELY: If we talk about what's happened in Oldham since people started with personal budgets and that's agencies started cropping up. We have an agency which particularly employs deaf people to work as personal assistants. I think deaf blind UK set up an independent living team in Oldham, because they recognised there was a developing need for support workers and personal assistants for deaf people, and Oldham council are setting up -- it's going to be like a website almost like Ebay called shop for support where people can go on and troller through the recommended care providers who hopefully will be able to attempt to meet people's needs. JOHN NAWROCKYI: Thank you, Mick. One the points that Martin made is that each council must have a user lead organisation within its range of options by the 1st April this year. That's a requirement that came in the documents, "Improving life chances of disabled people". So there is a requirement. Are there any other questions for Michael, Mick or Scott? FROM THE FLOOR: Just a question about PAs. I'm interested in terms of qualifications, CRB checks, safeguards, and my question I suppose is what do we do to mitigate the chances of abuse in such an arrangement? In other words, that we're not exposing clients to the risk of abuse. JOHN NAWROCKYI: I think the response is that a personalised approach to service delivery can't be entirely risk free. If we as a council commissioned a provider of person assistance, we can ensure they conduct CRB checks, we can ensure they take employment references, we can make sure we check the career history, but we can't require the service user to choose a personal assistant 22 who is CRB checked, so we can't insist that a personal assistant chosen by a service user or a family member goes through the CRB process. So people have a right to choose anyone from the community whom they trust. Now, with that goes a degree of risk, and I think in terms of personal support planning we need to build the opportunities and the risks into the care plan, because it's absolutely right that somebody should choose the personal assistant with whom they feel comfortable, especially some of the more personal aspects of life. But the fact we can't enforce CRB checking or employment vetting or referral to the new body, the independent safeguarding authority does mean we live with a degree of risk and that has to be agreed and signed up to by the council and the service user and perhaps even the personal assistant. But this brings with it those opportunities and risks, the choice. Is this gentleman in the front who has not had a chance? FROM THE FLOOR: Good morning, a quick question about the monitoring evaluation of the personalisation programme. What I am concerned about here is the user's input in monitoring the evaluation, because me concern is a lot of work is done by the back door with the council. How confident can we be that we have ownership of this process? JOHN NAWROCKYI: That's a really good question and I will ask Martin to come in from the department's point of view. My immediate response is that we're not going to achieve a perfect system by the end of what's called the three year transformation period. We as local councils have been given money over three years by the government and the third year is 2010/11. There's no way by March 2011 we will have completed the full range of changes we need and the kind of things you are laying down won't be fully met by the end of March 2011. 23 I think what we need to do is -- in a sense we've dealt with the bulk issues around elderly people, disability, mental health, we haven't explored the specialist needs of just handfuls of people, and I think that's something that in the third year whilst we have funding from the government we also have an politician to do. Perhaps the pressure to be working with user lead organisations starting from 1st April is an opportunity. That answer in its demonstrates we haven't thought this through in terms of certain specialist needs. I don't know if there's anything you want to say, Martin. FROM THE FLOOR: Could I come back to two points, here. I am concerned about the user's input, because that's new to me, I haven't heard about that. So for a start we haven't been informed that we -- involved from April 1st, but my concern is if we're talking about a local level where there's a disability organisation, often the case issues are not engaged properly in the organisation, and I'm concerned. So be mindful of that. JOHN NAWROCKYI: A very good point. Along with the requirement to develop a user lead organisation should have come the requirement to publish in advance the opportunity for people to be involved in its development and this is probably stronger in some areas than others. MARTIN CATTERMOLE: I think we also need to make clear these kind of changes, it's actually a big cultural change not just for Social Services, for the health service as well, and actually this idea of working together with disabled people and their families involves all sorts of things. The examples we have heard from Oldham I suppose are just some of the things that are that can start to happen if you get that right, but it has to be done at local level, it won't be 24 the same everywhere, so people have to work it out locally. Coming back to the issue about safeguarding, that is something people get concerned about. Some of this is actually about making things that are already there work much better. For example making sure people whose needs are actually looked at Mr thoroughly in the first place, and as we have been saying, when you have a support plan that the council checks that and says actually are there any risks here? Oldham have also got something called a "risk enablement panel" where I think if there are concerns we can spend more time looking at a situation and helping them manage the situation so it is safe. Just in terms of what people say, with did more research recently about the experiences of disabled people who have got direct payments. So that's one issue people talk a lot about. And what those people said, it wasn't all rosy any means, either for people or for personal assistants, there were things that needed to improve, but people said they had a better experience from person assistants than they did when they used to use conventional home care services. People were more respectful, they were more likely to be able to arrange support in the way that actually they chose. So there are some if you like inbuilt safeguards in that system. The other thing we have been working with councils on is how to actually do better checks and reviews, because you can't always stop things going wrong, but you can actually go out and see how they are working and do something about them. So we've worked with 10 councils on developing a better way to do reviews that looks at the kind of things Michael talked about. What is it that is actually important to you in your life and is that actually happening, are things not working out for you in some ways, these are things we need to do 25 something about. We also got another project going with 12 councils at the moment where people take the results from all of that and they work with people like yourselves, the local organisations to say if things aren't working out for people, what do we actually need to change? How do we need to change the way services are organised, or do providers need to change what they offer? These are the sort of things -- they're not things you can stand in the Department of Health and say: you must do this. They are things people have to work out locally but can be done. JOHN NAWROCKYI: Two more questions. I must just say two more questions and then we'll finish for the break. Well three, okay! The lady in the middle was first. Just those three questions. FROM THE FLOOR: I'm Hilary from Oxfordshire community Social Services. Not a question more an observation about the personal assistants that were just mentioned. We're obviously taking the view that choice and control is paramount, but one thing we're just developing at the moment is a support and confidence scheme which is a little bit like a kite mark if you like used in trading standards where people will be accredited. So people can apply to be accredited. So while we can't guarantee a important stays with an individual using a personal budget, they will know that this list has people who have, for example, been CRB expected, registered with the independent safeguarding authority and have in the certain trading or standard levels that we would like to see with person assistants and we're hoping that user lead organisation will help us choose what those standards should be. JOHN NAWROCKYI: Thank you for that. 26 The gentleman at the back? FROM THE FLOOR: My name's Stuart from Camden Social Services. Basically about personal control of budgets and self linked care, PAss, is daunting for both deaf and hearing people who want to take this approach. The thing is most hearing people with mental health for example, they have large organisations of support behind them so that managing PAs, there's the back up of user lead groups to get help when things are going wrong, whether it's a practical thing about managing the money, the payments, the organisation, or when they're not very happy with a carer and they need to work out how to change that over. For deaf people we're talking about small groups and are aren't the organisations set up locally, deaf lead organisations set up locally which would easily be available for people to use, which means that the fall back is that they would go to disabled groups to get that support. But again, it would still be a hearing led organisation that deaf people are going to, which for many deaf people wouldn't be much of a difference from what they're already getting. So my question is really how can that be resolved? And I think within London boroughs, one possibility would be for a combination of boroughs to contact a deaf organisation such as RNID or deaf plus to commission them to do that London wide. But that needs imagination and needs boroughs talking to each other which isn't always that easy to chief. JOHN NAWROCKYI: Thank you for that, it a good point and certainly something that the AD AS network is going to be exploring this year. In this third year of funding we need to take the opportunities to purchase the most specialised opportunities. I can't say that for Greenwich, I have my team in front of me, 27 but it's something we need to think about in termination of procuring that specialist user led services. Is this on the same point? FROM THE FLOOR: Yes. My name is Wendy Anderson, I'm the team manager for the service team in Surrey. I would like to thank you for your point actually, I was very interested. When I have been chatting to deaf people about this, the idea of the personalised budgets really was questions about where is the support going to come from. Now, I am not really representing -- I'm representing deaf people and as a deaf person myself. The question of choice comes down to issues like the kite mark services, and trying to promote deaf people to establish their own businesses where they are providing services. I think that's really important and I think if you're not thinking like that then otherwise you're going to be losing that element of control. I think it's actually really important to bear that in mind, that it's not just thinking about what's currently out there, but what also can be encouraged to be developed. JOHN NAWROCKYI: That's a point well made. So one final question before the break. FROM THE FLOOR: My name's Sharon, I'm from the -- I'm a sensory team manager. I agreed with the point that was made earlier by the man from cam deny. As a deaf person I am extremely concerned about the grass roots deaf people. When you talk about a deaf person like me who has his own abilities to function and think for himself, that's great, but if you're talking about a lot of deaf people in the community who are what we call "grass roots" who aren't aware, they wouldn't know how to cope with that and that kind of responsibility, and we 28 have road shows where we have gone to different places and met with different deaf people in the community and we go there, but actually what happens is those events aren't advertised and people will say who are running them, "We told the deaf community about it" but the way they have done it has been so inadequate. Deaf people haven't really known about it and not turned up to these various events. This isn't an isolated occurrence, this happens all the time. What happens is the deaf voice gets lost and it's fine if we who are working in the area are there attending, we can speak on their behalf, but actually we are just individuals and I think what needs to be proposed is some kind of a road show that goes all around the UK where information can be dispersed to the grass roots deaf people so they will know. And I know we've got one in February just in our own area. So maybe what we could do is network so we can get this information out to the real grass roots deaf people, because a lot of the sensory services are closing down, there's been a lot of trouble knowing how to book interpreters, is there budgets for that to pay for the interpreters, what's happening in people's support plans. The list is huge. So I think it would be important if we network and really discuss that later on. JOHN NAWROCKYI: Thanks for that. Really powerful points mailed. Just a reflection on that, one point of our steep learning curves is moving away from the history of assessing people on dependency and need to assessing people on independence. We need finish now. Thank you to Michael for sharing his experiences I found that really enlightening. One of the things that the form are care services minister used to say, this is her big strap line was, "I don't want a service, I want a life". And that was what he used to say most about the personalisation agenda. It just reinforces the move stray from the medical 29 model that Martin mentioned about social models, social inclusion, mobility. So thanks very much for that presentation. I think well take a full 15 minutes for coffee. So if we reconvene at 11.50. Thank you. (A short break) JOHN NAWROCKYI: Shall we start the second session? Are we ready? Thank you. This is a fascinating time to let convene. We'll crack on. The next session was due to be 45 minutes long -- FROM THE FLOOR: The microphone's not sounding clear, it's very muffled. JOHN NAWROCKYI: Is that better? FROM THE FLOOR: No. JOHN NAWROCKYI: Sorry about that. FROM THE FLOOR: It's the same. JOHN NAWROCKYI: In order to -- FROM THE FLOOR: No. JOHN NAWROCKYI: Is the induction loop not working? Can you hear this? FROM THE FLOOR: No. JOHN NAWROCKYI: I'm slightly at a loss now! Can you hear this? Can you hear me? FROM THE FLOOR: Yes. JOHN NAWROCKYI: Back to nature! I'm really pleased to introduce Professor David Challis. David is the Director of Manchester branch of the personal social sciences research unit, and he is going to tell us some of the early findings of the early work on 30 personalisation through the individual budget pilots. It will take 45 minutes. We may have limited opportunities for questions at the end. But I think because it will take the full time, can we just stay with an hour for lunch rather than an hour and 15? So if we start lunch at quarter to 1 and reconvene at quarter to 2. Will an hour be sufficient? So we'll give David his proper allocated slot and I will hand over to him now. DAVID CHALLIS: If I go without a microphone? FROM THE FLOOR: Yes. DAVID CHALLIS: I'll put it there. I really want to do three things. I want to give you some background to the individual budgets pilots. Secondly, I want to tell you about how the service worked in practice. Better? And thirdly I want to tell you about the outcomes and cost effectiveness of the individual budget pilots. So starting at the beginning, and you have had a very good introduction to personalisation from the Department of Health, so I will be very, very brief. Individual budgets were seen as central to the personalisation agenda aiming to modernise social care and with a big aim of promoting choice. In particular they were meant to improve service users' role in assessment of need, enable people to understand resources that they could use, to test opportunities to bring together several different funding systems and to simplify and bring together different assessment processes into one assessment process. To help people identify outcomes, to support people doing care planning and to experiment with different options of using individual budgets. That was ambitious. And you will see, as I go through, that only some of those agendas were in fact met. 31 The research we undertook used a randomised trial where we compared people with individual budgets with people who had normal services in 13 different local authorities in England. We followed people up after six months. We did some indepth interviews with people using services and looking at how they planned their support, and we did interviews with managers, practitioners and other relevant staff and we also looked at front line workers. Now, that's a huge agenda and I'm only going to give you a small sample and it's still probably too much. So my apologies for going rather faster than I would wish to. In terms of stakeholder perspectives, there were nearly 1,000 service users, 153 carers, 91 care managers, 14 Adult Protection Officers, 16 providers, 7 commissioning managers, and 13 individual budget leads. So a lot of different stakeholders involved. Okay, that's if you like the boring background, so what happened in practice? How was support provided through budgets? In terms of issues of who gets a service, eligibility and access, nothing really substantially changed. The same rules, the same approaches to eligibility happened. There was no impact on fair access to care. The only change that occurred was that at the margin a small number of people with mental health needs who were not users of social care became users of social care. Okay, so how was assessment of needs undertaken? Was it different, was it similar? In general, processes weren't hugely changed in the pilots, although there was a greater interest in the contribution of self assessment to the assessment process. And there was also a role of what we called mediated assessments, that's families, friends and other people close to the service user 32 helping to understand their articulation of need. The most significant change, the most positive change, looking back on the work with hindsight, was greater integration of information from different sources, from the service user, from information that was already known, from the family and from the responsible practitioners and pulling it together as a whole. If you like, governments have tried to do that for years, but it began to happen a little more in the pilots. That was very positive. In terms of resource allocation, at the time in some of the sites there was a thing called a resource allocation system developed. This was -- sometimes it was a very simplistic -- and I use that word advisedly -- simplistic tool which people answered a few questions which then allocated them a sum of money. A lot of concern about that itemising items of need and turning that into a sum of money, because it takes away the unique and important differences between many, many individuals. I think people are less committed to that model now than they were then. And in fact what local authorities had to do was they would use this resource allocation system and then it would go to a panel, and the panel was a little bit like the decision-making process for a pope, where it would go into a closed office and eventually the resource allocation decision would kind of come out as a puff of smoke! It was an attempt to achieve accountability using a suspect technology and I think people did a good job in a complicated situation. And I think we need to get better at how we turn people's complex needs into allocations of resources. I think -- I put it in a kind of academic way at the bottom of the slide -- there were real concerns about the sensitivity and valued validity of some of those tools and they may also give very inappropriate 33 incentives to some people. For example, if I'm depressed and you give me a budget, when you review me in six months time am I going to tell you I'm less depressed or have I got an incentive to say ...? It's the wrong kind of incentive. We want people to get independent, to get better and in control of their lives. So certain concerns about that. Okay, how were budgets managed in the pilot? Two thirds were managed as a direct payment. More likely in mental health services, less likely in older people's services. About 20 per cent were managed by the local authority. 13 per cent were managed by an agent, could be a family member, could be a user lead organisation. One person had a trust created, and four had provider organisations managing their budget. As time has gone on, that has changed and the local authority managed budget proportion has increased. I'm going to say this later, but I'll say it now, the onus upon local authorities where that happens is that they need to be able to manage that very flexibly and very creatively, and that's going to be, I think, an ongoing struggle for the authorities, but it's really important if we're going to make personalisation work. So individual budgets, often offered as a direct payment. Other approaches were less common. Even where there were direct payments, care managers had to do a lot trying to make services more flexible. There was only a limited role of external agencies and they were used less for support planning than for arranging services and arranging support. And I think you could say that one future direction could be that not for profit organisations which would include user lead organisations could have a greater 34 role in support planning in the future. And interestingly, if you look at services in Australia where personal budgets are less far down the line but the role of the third sector, the voluntary sector is much more powerful than in this country. That's clearly seen as a role for the third sector in Australia. The other thing to say is, there was very, very -- the individual budgets plan was very limited in its impact in terms of bringing funding together. In fact, most people had social care budgets, very few people really had other budgets integrated into that, except for a little bit of supporting people. And I think current government policy, we don't talk about individual budgets, we talk about personal budgets entirely reflects the logic of the sheer difficulty that was experienced in achieving that. Okay, so support plans. What did people spend their budgets on? Much of the expenditure was on personal care. There were different views about what the boundaries of legitimacy and acceptability were in using social care. What can you use your budget for? What's right? What's not right? Where are the margins for creativity and accountability? The answer is, that's a really complicated problem which we don't have answers to, but it raises concerns. There was a general articulated concern between what our traditional care needs and leisure needs. And that's actually really complicated, because I mean, just to ad lib for a moment, there is a huge literature with people with minor depressive disorders, one of the best treatments you can offer people with depressive disorders is activity and exercise, and it is proven particularly amongst older people, you can make a significant change with an exercise regime. So when is it a leisure need and when is it a therapeutic, a care need? I think that's the sort of debate you get into. 35 Okay, so in terms of telling you who got what, we took a sample of 285 support plans, and the average cost per year was £11450. But there were huge variations between the different user groups. For people with learning disability it was around 18,000, for young people with physical disabilities this was around 11,000, people with mental health needs around 5,000, and for older people it was around 7,000. Now, those variations have been always with us, the average cost of people in different broad user categories have always had that hierarchy, so in a sense it's nothing new. I can't tell you whether that distribution is right or wrong, but that's how it was. Expenditure: in this slide we've mapped the expenditure for people who had a direct payment on the left, and people who had a managed budget on the right. And on the whole you can see that there were people who had a direct payment were more likely to have a personal assistant than persons with a managed budget, and less likely as a proportion of people to use home care. They were a bit more likely to have leisure activities and that was less so for managed budgets. Short breaks, they were less likely to take and so on. So there were differences, whether it was a direct payment or a managed bundle, but that actually means -- to be very honest with you, that means very little, because in fact the people in those two columns were different groups of people. The left-hand column were most likely to be younger people with physical disabilities, the people on the right hand column were most likely to be older people. So you have got the preferences of user groups mixed up in that too. People did their budgets beyond care. They did spend the money on things 36 like cleaning, decorating, gardening, leisure activities, classes, gym membership -- very close to my depression example -- computer maintenance -- an interesting one -- support for carers, alternative therapies -- very prince Charles -- so a variety of things. What you see is the majority of the effort went into people's basic care needs. Why? Because the budget was limited and people tended to meet their basic care needs first. When we interviewed people, people said some other things too. Some people said they were very concerned and they didn't want to lose services that had taken a lot of effort to get. Some people valued security and continuity of care. Some people found that agencies responded by being more flexible. So once people had a personal budget, the agency started being more willing to do what they wanted when they wanted it. And that was very positive. And there were some people who did more shopping around. They did exercise more choice. So they might use mainstream services, but they looked at different mainstream providers and they used their choice that way. In terms of monitoring and review, in most sites the processes of monitoring and review continued much as they always have done. People were reviewed by their care coordinators, care managers, on the routine basis that that has always been done. I am conscious, I'm looking at the clock at the pillar facing me, and I am trying to hurry through this bit of this because I want to go slow on the outcomes that I know people wanted me to talk about. So I'm nearly through with the first bit. I think I have said this before and I'll just say it again, the theory of personal budgets was that there was room for considerable local flexibility about how you held your budget. In practice, in this study most people, over 37 two thirds, took a cash direct payment. The idea of a budget managed by the care manager but spent in ways that service users wanted was at that time rare but has been identified by some local authorities as a very positive way forward. There were very few examples of third party trusts and third party individuals managing budget, or the individual service account which actually four people did. So we're talking mainly about direct payments here. I say that, it's important. So what do we learn about how the -- how individual budgets worked in terms of how people managed them? I think the first thing that we noted was that the findings identify a need for flexible deployment of personal budgets, a real challenge for local authorities. But there is a good evidence base in older people's services where flexible budgets within the local authorities can produce significant benefits, and I'm guilty, I did some of that work. Another thing we learned was that it was really important, it was expressed to us by service users, by their carers and by staff in local authorities, we need to get clearer about the boundaries of legitimacy, what you spend budgets on and what people are comfortable spending budgets on. So need for greater clarification. And government took that very, very seriously indeed. There was very clearly further work needed on how to devise means of determining resource allocation, who gets how much budget, which meets key criteria of fairness, equity, sensitiveness, specificity, it is different for different groups of people, reliable, the same person get the same allocation twice, and it's valid, ie correct. Those are, if you like, classic statistical tools for ways of evaluating any instrument, and we need to do that with any 38 resource allocation tool we've got. The other thing that came out is, there is a very exciting potential in the UK for developing new ways of delivering care coordination and brokerage activities, and as I said, in Australia, if you look at where these services are delivered from, it's from not for profit organisations, it's from specialist organisations such as sensory organisations, such as the Alzheimers society, and religious organisations as well. I think there could be much more of a mixed providing economy on that in the UK in the future. And probably the incoming government will be very sympathetic to that. Okay, so I'll slow down. My target -- we all live with targets today -- my target was about 12.20 on that clock. I've done badly, it's 22 minutes past, I'm 10 per cent out by my own target, but I will just let everybody have a brief moment of respite. I now want to move on to the questions of did it work, for whom did it work, and was it cost effective? Okay, I mentioned funding stream integration. That was one the goals. 99 per cent of support plans was social care funded. Only 11 per cent had supporting people funding. Eight per cent had ILF funding. One had access to work funding. And nobody had any funding from DFG. That one not surprising, it's a capital grant. How can you mix a capital grant up with revenue funding? I think the general message, very limited funding integration indeed. All sorts of good reasons for that. Different government departments, different rules and so on. I think we can say that was not successful. How did we measure outcomes? We did a randomised trial. There were 2500 people randomised of whom nearly 1600 people consented. That led to a final 39 sample of 959 people of whom in terms of user group categorisations by their local authority 34 per cent were younger people with physical disabilities, 28 per cent were older people, 25 per cent were persons with learning disabilities, 14 per cent with those using mental health services. Our data was not good enough to pull out subsets of people with sensory problems. So I apologise for that. But you will see that clearly sensory needs will be distributed across these groups of people. I think the one big message to say about all the conclusions in this is that in terms of-there are too many younger people with disabilities and too few older people. The proportions of people using services are much different to that. Some 60 odd per cent of persons using services are older people. So just remember that when you take account of the results. We followed people up at six months, we looked at quality of life, psychological wellbeing, their outcomes in terms of social care needs and their levels of satisfaction. And we have broken it up into everybody and user group like older people, learning disability and so on. So the simple stuff first. Overall in terms of quality of life there was no difference between those receiving budgets and those receiving existing services. But when you look at individual groups those with individual budgets who had mental health reported better quality of life. I think the reason for that, to be very, very honest, was often we were doing far too little in terms of social care needs for people with mental health problems, and this was offering something to a group who got nothing. So it's almost at my most crude, it's out is better than NOWT or something is better than nothing. Talking of psychological wellbeing, again there was no difference between 40 those receiving individual budgets and those receiving existing services. They were no better and no worse off. However, when you looked at older people, their psychological wellbeing was worse with a personal budget. They reported things like it was a hassle, it was a problem to be given a direct payment, I don't need this problem, too much work, things like that. When we looked at the social care outcomes, they covered things like cleanliness, feed, nutrition, safety, accommodation, occupation, participation and control over life. A set of about 7 or 8 items that are commonly cited. Again, for the whole group there was no difference between personal budgets and normal services. Although those with personal budgets did say that they felt more in control and that was noticeable. That was also true for people with learning disabilities, a higher sense of being in control, but they -- on the other hand, they had reduced social participation. So the budget seemed to make them feel more in control but less social participation. Again, there's wonderful case studies I can describe as to why those things are the case. Okay, what about the hardest thing to describe, which is what the government is very concerned about, what the Treasury is very concerned about. Is it cost effective to do this? So what we did, we tried to bring together the cost of doing this with the impact of doing it. Look at the cost implications of changes in people's wellbeing. In other words, a splendid little notice of what that is -- sorry. What we tried to do was look at the relationship between costs and outcomes by comparing differences in costs with differences in outcomes. And then to take account of both factors simultaneously. I have some diagrams which I will take you through and I hope they will be very, very self 41 evident. Okay, so we'll start with what I called the cost effectiveness plane. From left to right we can look at the cost difference between individual budgets and normal services. The further to the right you go, individual budgets are more expensive; the more to the left you go, they're less expensive. Okay? Then if we then go north/south and look at the effectiveness difference. The difference between personal budgets and normal services. At the top, the nearer north you are, the nearer to the top, personal budgets are more effective. The nearer to the south you are, personal budgets are less effective. So if you think of the four sectors, the green sector, the north west, where you would find the wonderful world where individual budgets are both cheaper and better. And in the bottom right-hand corner is the worst possible world where individual budgets are more expensive and they don't work as well. So it's like north west is good news and south-east is bad news. But that's regionalism! The other two which are the orange bit of the traffic lights, you have to think about it, because in the north-east personal budgets would be more effective but they would also be more expensive. So that's a decision. Do we want to pay more to get more? In the bottom one, personal budgets are cheaper but less good for you. So it all depends where people fall. So what I've got is some maps. What I am going to show you is cost effectiveness maps on that map for the four different user groups. Older people in terms of social care outcomes are wonderfully spattered around the middle. And I can give you the proportions in each of the cells. 42 Older people are really, just as the dots tell you, scattered around. It didn't seem to be that much worse or that much better. They're absolutely centre pointing. So there were some old people who are in the north west who clearly did better. Some other people in the south-east who clearly did worse. Then there's 58 per cent of older people in the two orange zones. So not a very clear picture for older persons. Looking at learning disabilities, it's a little bit different. The north west, if you like the green zone, the good value zone has one third fell into that zone. Another 30 per cent fell into a positive outcome zone in terms of lower costs, but they were also lower benefit. And then the high cost but higher benefit there was 18 per cent, and in the south-east the bad news area, there was 18 per cent. The learning disabilities more leans towards that. And these are for basic care outcomes. For younger people with physical disabilities you get a different story. They are much more located in the north west. So for younger people with physical disabilities you are talking about nearly 60 per cent of them are in the IB-- personal budget was more cost effective for them, it was better and not more expensive. So good value for an investment for that user group -- for two thirds of them anyway. People with mental health needs, this result surprised me. I think my conclusion is because they got something when they were previously getting very little there was a distinct benefit. But not as big as the benefit for people -- younger people with disabilities. Nowhere near as big a benefit as that group. That's for basic social care outcomes meeting fairly basic needs. 43 If we look at psychological wellbeing, older people came out very badly indeed. In the green zone, only 4 per cent. In the red zone, nearly 50 per cent. And then in the other zones around another 50 per cent. That made sense in terms of the earlier finding that for older people, the idea of a direct payment was not good. Things have moved on since then and people have talked about local authority managed budgets offering flexibility particularly for older people's services and that's I think very constructive as a way forward. Psychological wellbeing in terms of learning disability group: it wasn't hugely cost effective for them in terms of psychological wellbeing either. And then for younger people with physical disabilities, again, very clear benefits for that user group. Again, 43 per cent were located in what I am calling the green zone, the positive zone, the north west. So again a big skew for that group of people. Mental health -- people with mental health needs, their psychological wellbeing: again, pretty beneficial lean towards the north west for that group. So I think what you end up with is, the real world is nothing is right for everybody, nothing is cost effective for everybody. We have to remember that the model for delivery of personal budgets in these pilots was very much orientated towards being a direct payments model. So in some ways, if I'm really critical of our work -- and I should be -- we were doing what amounted to an evaluation in some ways of direct payments rather than a wider concept of personal budgets with lots of choice about how it's managed. And so I think when you get negativity for older people, you get some negativities in learning disability you have to put it in the context of how 44 the budgets are delivered and remember there are other ways, there are budgets managed by a local authority, there are budgets managed by user lead organisations, there is the role of the third sector. We can make more creative ways of deploying those budgets, and I think that would be the -- if we get real flexibility into how budgets are deployed, I suspect we will see different outcomes. So in terms of overall patterns, what do we see? There is some evidence of cost effectiveness for some groups of people in relation to social care outcomes. Particularly younger people with physical disabilities and also for the relatively small numbers of people with mental health needs. There is weaker evidence of cost effectiveness in relation to psychological wellbeing, but it is, again, hinted at very clearly in the same two user groups, those with mental health needs and those younger people with physical disabilities. The issue is that the picture varies significantly by user group. But that's a huge -- just to talk about user groups is a huge generalisation and it's an inappropriate generalisation. I can say to you, personal budgets as done in these pilots were cost effective -- more cost effective for people with physical disabilities and for people with mental health needs, but within those, which people with physical disabilities, which people with mental health needs? We don't know enough about sub groups within those groups and we need to, because there will be different values, different perspectives, different needs because of the state of the illness or condition that people are addressing. So it's far too crude, that, as a generalisation. It's a start. I think the big thing is the direct payments model that was rolled out didn't offer cost effectiveness for older people. I don't think the concept of 45 personal budgets is ruled out by that. I think what is ruled out from that is the way personal budgets were delivered. People are wrong to say personal budgets are bad because of that finding for older people. They would, however, need to say: we need to deliver personal budgets in a variety of ways that are sensitive to people's needs and expectations. I've hurried over a lot of complicated material. That's meant to calm me and everybody else down. Thank you for your patience listening to me and thank you for your patience about the technology as well. JOHN NAWROCKYI: Thank you, David. That gives us five minutes for questions before we break for lunch. Does anybody have any burning questions? FROM THE FLOOR: Very useful research to get a general perspective on the different user groups. I'm frustrated though. Hard of hearing and deaf people, where do they feature? I know you said you have not got the sub group categorisation but as a general pilot survey it's all well and good, I'm just wondering if there's some possibility of having a pilot on deaf and hard of hearing services or indeed deaf services generally? What would we learn from that? That's what I want to know? Has it been done? That's my first question. Also, issues linked to personalisation. The variety of funding streams are a confusing picture, I'm aware of that, and resource -- appropriate resources and resource allocation is also an issue. And, you know, one person may say, "I want my personal budget to pay for an interpreter 24 hours a day" is there some question on the legitimacy of such a request? Then there's a debate, I will be interested to hear the delegates views on that. And an issue was brought up earlier about deaf service providers. That would be interesting to talk about. I would like to see more co-ordinated 46 responses from terms of sensory services and how individual budgets, personalised budgets, how this pilot would feed into that. Certainly it's very interesting in terms of the four groups you have identified, but I just think there's something missing here. We want some real evidence, we want something we can learn as sensory team service providers when we're asked to make a request, we don't know if there's enough money out there, we haven't got anything to compare it to particularly, how do we know if we do have enough money to cover the costs? Because there's extra money. Most of the time the traditional services looks at a day care cost I don't know of £50 a day, say, and that becomes your budget, that's the benchmark you use, and if you overspend it -- well, the question is whether it's going to be enough. I know there's a lot of questions there, I just think I have a lot of questions. JOHN NAWROCKYI: Over to you, David, with delight! DAVID CHALLIS: In a sense your frustration is one I share and it's one that I wanted to address when we began this. We were dependent on for some of the data we used, we were dependent on what data the local authorities could provide us with on the needs and characteristics of individuals. And we created what we thought was a reasonable minimum data set that would help us to describe the needs of everybody, whether they were in Leicester, or Norfolk, or Gateshead. And although there's been enormous effort, single assessment process, common assessment framework, and governments have tried quite hard to improve the standardisation of what information we have about the needs of people in different places, we're actually not very good at it. And we couldn't populate our minimum data set with key characteristics of people's needs of 47 which sensory needs are one. The precise characteristics of the mental health needs of mental health service users. I am embarrassed to sit in front of you and I am embarrassed as I have done to sit in front of an audience of people dealing with mental health services when I can't tell you what the range of mental health needs were, how many of these people have had long standing depressive disorders, how many had long standing psychotic illnesses et cetera. I can't say that, and it's because we can't get that quality data and we couldn't get the data on sensory problems in just the same way. So I agree completely. I wish we could do it and we couldn't. It would have cost us quite a lot more money, because the only way to have got that data would have been to collect that ourselves for all 959 service users, and the government couldn't afford to give us the extra money for the research. You're absolutely right, I hold my hands up. JOHN NAWROCKYI: Sorry, there's only time for one question. DAVID CHALLIS: Sorry, I talk too much! FROM THE FLOOR: Hi, I work for a third sector provide their works across three local authorities and in my experience they don't seem to recognise the needs of people with sensory impairments and that's what's very frustrating for us, and even now as we are going through the transformation agenda people's needs are being lost and people are not taking seriously how disabling it can be to be deaf or blind or a combination of both and I would just like to hear more about what can be done to get those voices heard of people who are actually without communication in the formal sense that we are recognised. DAVID CHALLIS: I have to say, this is a very strong personal memory for me, because had I was but a young lad, I worked in the local authority health 48 department, so it takes you back a bit had local authorities ran healthcare. And when I worked there in a mental health service in Lancashire we had a whole group of specialist staff who dealt with sensory needs. That was in the early 70s. Then along came the roll out and the consequences of something called the see bone reforms, which produced things like generic social care, and all the money was pumped after the Maria cold well case very much into children's services. The value of the specialist services who provided a voice within the local authority for the needs of people with sensory problems was completely lost. And a number of surveys we've done over the past few years would suggest that in relatively few authorities have they yet got back to the level that local authorities were in 1971 and 2 in terms the resource commitments to people with sensory needs. I think that's pretty sad. JOHN NAWROCKYI: I would echo that. Sorry we do have to stop there, because the day needs to follow its programme. So apologies to the other potential questions. Can we break for lunch? Thanks to David very much, we could have kept him here for another hour, no doubt about that. We'll reconvene at 1.45. (Lunch break) JOHN NAWROCKYI: Shall we start the afternoon session? It's really quite a busy afternoon. We have four speakers scheduled for the first hour which means 15 minutes each, so it will be quite tight and you will need to be focused because you will then have half an hour for Christine on disabled children. So the next 90 minutes is quite intensive. So I will need to keep people to time otherwise we will have people missing trains. So over to Mike Adamson from the royal institute for the deaf. 49 MIKE ADAMSON: Thank you. I'm Mike Adamson and I have overall responsibility for RNID services -- FROM THE FLOOR: The microphone's not on. MIKE ADAMSON: Can you hear me now? My name is Mike Adamson and I know some of you but not all of you, and I have overall responsibility for RNID services which includes care services. It seems to me the conference has given a really balanced overview of the progress of personalisation, and particularly it's in the just about individual budgets for us. We're very much feeling our way towards how to embrace personalisation, but it's-and we see it very much as an underpinning philosophy and we will always expect for people providing services to us comments about who we provide services to, and what kind of mix that is. It's a provide are organisation that creates huge challenges for us and that's what I'm going to try to major on. But we would expect to be challenged about that and that's entirely right, it seems to me. I wanted to talk initially just to give you a brief case study. In actual fact the quote was not supposed to appear immediately, but let me tell you about Daniel. He's someone we're currently supporting in our services in the so the east. He has BSL and Asperger's syndrome, had been in residential care for a long time. He doesn't have an individual budget, but was starting to live more independently in his own flat but really struggling with it, and we were asked to provide a certain amount of support each week for him, about 14 hours. Even though he didn't have an individual budget, the key to it was the way in which we provided that support in as personalised a way as possible, and we work with him and his social worker to establish what as I goals were for his 50 life basically. And the three key things he highlighted to us, one was the desire to be able to travel independently and get around, go out and about; second was to manage his own finances; and then the third was to get a job. The interesting thing about the way in which the support has been provided from our perspective is that he has had -- initially the support started as just being available on Monday and Friday, but he said that actually that wasn't always convenient for him, and he started to make choices about when he would have that support and indeed whether he would have the support on those days so. We now have to set up a system where he chooses the timing of the support, he can text to say he doesn't want it and text to say he would prefer to have support on other days. So we're trying to actually address the way in which we provide that. The other thing about it is that the balance of that support between his goals is also changing over time. So it started about support to be able to travel independently, but then as he grew confident in doing that, he had taken that on board and more the support hours went into helping him manage his finances himself. And again, he is now in a situation where he does manage his finances himself. So the balance of support is now towards actually support in getting him a job. We actually worked with him and his social worker to prepare job applications and through doing what, he was able to secure about four hours of work a week at Asda. He then started to talk about how much he enjoyed it, but also the challenges of actually working at Asda and the fact that the people he was working with were so unaware of his communication needs and so actually he wasn't getting the full benefit of the opportunity to interact with them. As 51 a result of that we worked with Asda to do deaf awareness training and training in communication support skills for some of the staff with whom he was working. Through that Daniel is able to say -- he's actually able to work, looking to work more hours. He has shared that quote that we have on the overhead, and I would then expect that the hours that we offer to decline after that. It seems to me that's again a sign of personalisation that actually the balance of what we do with the time that we're actually supporting changes and then over time the number of hours of support reduced, because actually someone is genuinely starting to live more independently. And that's without an individual budget. So I think that's a sense in which it is very much about the way in which support is offered. I just want to give a quick overview about what I think personalisation means for us in terms of the service users, our workforce, our state, or properties, our business and then final reflections. So for our service users, what's really exciting about it is that they are at the centre of planning their own lives, and using tools like the circle of support that's on the overhead, they're able to choose what type of support, from whom when they get it. The individual budgets give additional power to those choices that can be made. Again we have had very positive outcomes where people are choosing to change the balance of support they provide. So they're choosing some hours of support at one hour rate, for example some of the more specific personal care, and then other hours of support, for example getting around, at a lower hourly rate. So able to put together much more creative packages and split the care budgets in ways that would never have been possible before. We also have the story where someone that we started out providing support 52 to, just a couple of hours a week, where this man's mother had given up work in order to provide support, but she couldn't plug him into the networks that he needed in order to make the most of his life. So he started out providing a couple of hours support and over time not only has he been able to go to college and find a job, but also his mother has been able to go back to work. So the outcomes are not just about the individual budget holder, but also about the whole family around. There are also tools out there now like shop for support that many of you will be familiar with. In principle the idea of information systems there to make it clearer what choices are available to an individual budget holder and the people who advise them. Again it has to be a really powerful tool, because we all expect that, but again there are a lots of challenges with doing that well. And some of you will be very familiar with the shop for support website which is very specific in terms of the type of support it offers and the kind of information it gives. Would we with that level of support at the moment be comfortable about making choices about care and support on the basis of information that's there. So there are some real challenges. This picture is not an original, it's taken from a recent report on personalisation and shows some of the things that need to be available to an individual budget holder ranging from accredited service providers -- we heard a bit about this this morning -- really good information systems, access to support and advocacy and brokerage, real information about what they've spent on what. At the moment some of these developments are as I say still relatively immature. The other thing is if we're going to use a budget to empower people 53 to make choices about their lives, then actually you can't separate that system from actually how much budget is available. And we know from some of the work we're doing in different places that the resource allocation system that we heard about from David earlier, there's a hole host of practical problems at this stage of the development of the roll out of individual budgets. Local authorities are inconsistent in the way in which they're using the RAS. Many local authorities are not asking questions about the communication support needs of deaf people, so the RAS has a standard questionnaire framework. Actually the specific additional communication needs that are so critical to enabling a deaf person who have a full life actually are not being addressed. Where we have a strong operational presence, then sometimes we're able to influence the design of the RAS to address that, but that's not always possible. Similarly sometimes self assessment tools are being used as part of the process, and again the tendency is in our experience for deaf people to under-declare their support needs. So again they're not necessarily pulling out all of the support they need in order to take full advantage of the system of individual budgets. We talked about brokers. How many brokers are there out there at this stage and how many of them have the BSL and support needs necessary. If a deaf person does have a close family around them to provide the support, that's great, but that's not always of case. So brokerage systems are relatively underdeveloped. We're also finding that some local authorities are very flexible in the way in which the RAS is used and the budget allocated to it and allowing real choice about how a service users uses that money, but others are imposing hourly rates 54 that actually make it difficult to access the specialist support that is needed. So for example, when people are coming off supporting people budgets in some of the areas where we work, the hourly rate that a local authority is then insisting on can be as low as £7 or £8 an hour, and to be honest that makes it very difficult for specialist organisations to provide the support that is appropriate. FROM THE FLOOR: Can I interrupt here, because the speech to text -- can we clarify, RAS. Saying that, I don't think many people are aware of that, because I haven't been aware of that. MIKE ADAMSON: Apologies, I think one the speakers this morning introduced the idea of the resource allocation system which is the RAS. And that basically, the tool that a local authority uses to assess needs, and determine how much individual budget should be available to an individual service users. Perhaps I should ask you to explain that. And different local authorities are interpreting that in very different ways and not necessarily pulling out the specialist communication support needs of individual deaf people. That's the critical issue. So it's not consistent. There's in reason it can't work, but it's not being used consistently. In terms of the workforce and our own staff, the challenge of personalisation is again very significant, but it should be very exciting, because it should be very fulfilling for our support teams to actually work in a very enabling way with service users in order to ensure that they can make choices about their lives. We have invested heavily in some tools to support that in terms of rolling out person centred planning through the organisation, in celebrating examples of personalisation through our website, through -- 55 sorry, through our intranet and news letters, and we've also changed our management structure to be much more local so we can engage with service users and their families, but also with their social workers and commissioner, because again the essence of this is about tailoring the support we offer. But we will need to become much more innovative and flexible in the way we provide that support, because actually our care services, the essence of it is all about care and support and supporting independence, but we have to run it on a sustainable basis, a business basis. If demand is coming and going as individual service users make choice then our workforce will have to be much more flexible in terms of the contracting arrangements we have with our teams. I am just racing through in terms of time. Briefly in terms of the accommodation of related services we offer, clearly there's a desire to reduce the amount of -- the dependence on residential care and it seems to us that's entirely appropriate. There will be people who will continue to need residential care or indeed continue to choose residential care. There's no doubt some of the people we support could be supported in more independent settings if actually we can get those set up. But we shouldn't throw the baby out with the bath water, because actually the recent valuing people policy reviews talked about the fact that 30 per cent of people with learning disabilities felt lonely. Imagine how that is compounded if you're also deaf. I don't think we should necessarily move away from shared living environments that offer independence and the ability to go out into the community, but also offer the opportunity to come back somewhere to live around people with whom you can communicate. Our big worry, our nightmare scenario is double running costs that we have 56 commissioners who pull back people from residential care in parallel with which we're trying to invest in new forms of provision and we have funding for one set of services but we actually have an infrastructure, so the structure is 2. So we start to have under-occupied residential care homes so. We need to manage those two really well. For our business, when we think about it in terms of business terms and sustaining what we do, it's going to be a tight rope. It is absolutely right, I welcome the fact we're going to in need to be more responsive, flexible, creative, should be for fun, but actually it will be a tight rope, because if people can make choices just as with do as consumers he have day about what services they buy or what products we're going to manage ourselves in a very business like way and flexible way. That will be a challenge for a national specialist service. We believe that specialist services have a real role to play, there's some critical mass associated with those, we need to invest in some training and infrastructure around it. Actually if business comes and goes it's much harder to justify some of those investments. Lots of challenges for everything from our IT systems, our marketing, how do we collect debt from a direct payment holder who's also a vulnerable adult? Lots of real challenges about how we operate in practice. And final reflections: we're also -- not only do we have a new model of care funding, we also have potentially the most significant public sector funding squeeze in many, many years. And actually how will this play out in practice? As we need to work together with commissioners we work with to ensure that the market that develops for this care provision is developed in a carefully co-ordinated and planned way so we don't have lots and lots of people falling 57 between hoops. Critically so that people with hearing loss, who as we have heard are not at the forefront of some of the existing planning of individual budgets and personalisation actually get a chance at the starting line along with everybody else. Thank you. JOHN NAWROCKYI: Thank you Mike. I am afraid we have no time for questions. The programme is structured in such a way we need to go straight on to Hilary from Oxfordshire. Mike, thanks ever so much from that. Sorry to move you so quickly from the stage. HILARY GRIME: The more I hear about the personalisation agenda, the more I think we need a bingo card: you know the words creativity, flexibility, personalisation? There are so many buzz words at the moment, I think, that we really must watch that we use them sensibly, I think. Right, thank you I'm Hilary Grime and I'm service manager. I'm one of those people who Mike's just referred to who's responsible for budgets apart from anything else. Can I just check, can everyone hear? Thank you. Okay, Oxfordshire -- Oxfordshire's vision, there has to be a vision statement and I'm always slightly wary of these as being trite but I hope it sums up what we're trying to do at the moment. What I hope to do in 15 minutes is talk about what we're doing now, reflect on some of the issues related to hearing impairment and think about some of the challenges that we're facing. So rather similarly to Mike I am starting off with a case study as well. This is Mr P who has painful feet, came into the department with quite a lot of problems, but you will see he had actually lost his hearing and had been known to the hearing impairment team, which is a specialist service in Oxfordshire, so that sits within my remit, a hearing impairment team, a visual impairment team 58 and dual sensory loss team. He had previously been seen by the equipment officer, had some support in various ways, he had equipment at home. What was really important was he still could access our personalise the budget system. Because he was known to the hearing impairment team, we didn't exclude him from that. So he came in needing quite a lot of help with simple tasks, standing was difficult, et cetera. He needed the assistance of a support broker, so this is why with the support breaker he wrote his own support plan. So this famous RAS we were just talking about earlier, the resource allocation, the initial assessment of his needs indicated he was going to need £180 worth of care. So that was the allocated sum. Being Social Services of course, we do financially assess people. So he was assessed to contribute about £50 a week so that £130 would come from us, £50 a week would be his own contributions, and he could then prepare a support plan with the broker to meet his needs that was up to £180 in value. This is not per hour, note, this is £180 in total value. He wrote quite a long support plan. The full details -- I have only summarised them here -- but the full details are on the website. You have a slip of paper in the pack that gives our website details, and a lot of what I am talking about is on the website. So what was important to him? It was a lot longer than this, but what was important to him was independence, social interaction and relationships. Think about your criteria, maybe not critical, but substantial and important to maintain that he maintain those social interactions. What needed changing? He needed help with care and personal care around the house. He also chose to go to lip reading classes. What the hearing 59 impairment team had seen him a few years earlier, he wasn't ready for that and I am sure a lot of new this room will understand that. He wasn't at a stage he felt he could do that. He didn't want to acknowledge there was a problem. He would accept a bit of equipment in the home but nothing more. Now he was saying he would like to go to lip reading classes so he could use that allocation not only to provide the funds for the health lip reading classes, and we all know there have been issues around that over the years, but he could also access transport and a support worker to take him there to support him with that. So he was choosing what he wanted to do. How will he be supported? That was by his children, his care agency, his neighbours. There's the full details of that on the website along with another couple of case studies on there as well. So is it a new opportunity or is it just the same? Is it just a way of reducing the budgets or does it allow people with hearing impairment to access the same services or even improved services? People can take control if they wish to, and I think that is really key. It's got to be if people choose to take control. Nobody is imposing that particular system on them at the moment. It may be in future that we have to go down that route, but at the moment I think the government target is we all move to that fairly soon, but at the moment it is still optional. As I said earlier, the hearing impairment services from social and community services in objection for shire will remain the same. So we are exactly the same team providing exactly the same services and support but inside the umbrella of the addition of these. We have always done direct payments for equipment, but this means that the personal budgets and the whole of 60 the RAS will be available. Legislation still applies and I think there's that little caveat that always sits when people are saying: we want to make sure that communication needs are in there within the RAS and we fully agree with that statement. What we need to be sure is that people are ensuring that any legislation still applies. So for example, if somebody should be providing an interpreter under the DDA they should still be doing that. So in Oxfordshire for example we have contracts-and I know I have Philip following us in a minute -- but we have contracts where people can access services free at the point of delivery for education, Social Services, health. Those are provided under the DDA. People do not need to use their RAS for that, it is actually provided. I can't stress we need to be sure that we're not double funding, if you like. So how can we be creative? I've got to put a football reference in there somewhere, haven't I. That's Oxford United football ground. Day centres: we will still have day centres, we will still have home care, but people can choose to do something different. If you go on the main website you will find -- the national website, you will find lots of lovely illustrations as to what people have done, football, travel. Leisure courses. What's key for all the voluntary organisations here is that others can help. I think there's a real, real need for some of the large voluntary organisations and some small ones to think about working hard as brokers. It's obviously been achieved in some areas. I can't say we've solved it all, we still have lots of questions and challenges, but I would love to see more hearing impaired users becoming brokers and I would certainly love to see more hearing impaired users being personal assistants. It would be great to know that there was a pool of 61 person assistants out there who were BSL on a and who had some experience of hearing loss. That's the experience we need to build upon. I had to put this picture on. This is a gentleman with dementia. He can't tie his shoelaces, but the broker discovered that he had an interest years back in sailing. He's perfectly capable of sailing independently. His personal assistant goes with him, but that's what he chose to do. With the assistance the broker, that's what he chose to do. Lots of different things that he can think outside the box. If you look closely, you will see in the top left hand picture there's an oxygen cylinder. This is someone who in addition to his impaired problems, you can see a severe physical disability, chest problems. He didn't want to go to a traditional day centre, he chose to have a personal assistant who drove the car for him to go fishing. That's using the resource allocation in a way that suits you. That's what personal budgets can achieve. There are restrictions and I don't want to go through in a lot of detail because obviously most of you will be aware of those. We have talked about facts this morning and we obviously need to be sure that whatever's provided in a support plan is lawful, effective and affordable. Those are the key criteria. Safeguarding was mentioned briefly earlier. I did want to put what in. Sitting next to a director I need to ensure we put safeguarding in. It is key within social care and there will be situations where as a local authority we will need to retain some support with that decision-making. Adult abuse obviously is an area we're much more mindful of than we used to be and I think we are becoming more and more alert to situations where we need to take real, real care that we're not placing people in really quite risky situations. So safe guarding 62 takes priority on occasions. I'll just skip through this, because we saw this slide she morning. It shows we're all singing from the same song sheet. One of the things on the access to universal services information, these are two of the booklets we have for our users at the moment, and people here from Oxfordshire will know that users helped to put these books together. So people with visual and hearing impairment, dual sensory loss helped with the feedback that was going backwards and forwards. Philip sent me lots of emails to make sure these leaflets were right. There's a large print one, a clear easy read version that we use a lot with our service users. But one of the key things I think is the social capital which I know was mentioned this morning is obviously possibly the harder one really. But it really is about building sustainable communities so people are working as part of their community and people with hearing impairment can be part of that local community. So what are the challenges? We need to be sure that clients and carers -- and we must not forget carers as well with hearing impairment -- and all ranges of hearing impairment are able to access this. It's about shifting to promoting independence and prevention. Prevention used to be a dirty word, but actually get that right and actually that helps reduce our costs, it helps ensure that people are feeling safe and secure and independent within their community. Working with key partners. We work closely obviously with the PCT with the third sector Deaf Direct Oxford, with the audiology. We work with a lot of others, and this is about building up a sustainable community, building up library services with fire and rescue, with lots of services. We have a very 63 strong disability equality team within the county council, we work very closely with them. Increasing numbers, we have heard about that this morning. How do we keep brokers up to date with issues around hearing impairment? Can we make sure that the local voluntary organisations can really support that? Similarly, with dual sensory loss in older age groups increasing, could the personal budgets fund a communicator guide. We know very much from our talk this morning that is the case, but it's a hole system change, we've all got to think differently. What's happening now? We've got the staff in place, the budget in place, we've got a -- mental health, I'm obviously very aware the fact that with very deaf people the incidents of mental health problems is higher and there's a lot of scope for working with that group. The PCT have a budget as well. Information prescriptions: we have an information prescriptions pilot a few years ago. All information for hearing impairment services comes through this, and we worked very closely with Deaf Direct, with audiology, with library services to make sure we have up to date information that's provided. So this is accessible for brokers, for people who are working on self assessments. Anyone can access to information and be supported by the specialist teams. Support with confidence was the one I mentioned quickly this morning. That's why the approved personal assistance is coming in and we hope we'll get a lot of national interest in that as well. There are lots of strong user lead organisations but we're hoping to bring that together as a user led group around the transforming agenda so we will have a lot of voluntary organisations each able to strongly represent their particular area. We're researching payment cards so people can buy their care. We have had 64 500 users -- 250 sorry, users have now got full personal budgets in place and we're expecting that to move to 500 by April 10. We have the information standard achieved and that as about providing good information and we're the first local authority to get that information standard. Older people and other client groups are getting more choice and control in the support they receive. That's what Age Concern said. That's not part of us, but an independent user saying that: "local organisations are working ... closely together ..." We're trying to build up a local organisation support network by the user lead organisations. I'm sorry, that really is a very quick run through, very quick fly through, but I please encourage you if you do want to get in touch, if you would like to email me or you can email the team that's on the slip of paper there and one of us will get back to you if you have any further questions about how it might impact ... JOHN NAWROCKYI: Hilary, thank you for sticking to time. It's quite a canter through, isn't it. Philip Gerard from Deaf Direct. Chief executive officer. Thank you, Philip. We need to restrict you to 15 minutes, but looking forward to hearing what you have to tell us. PHILIP GERARD: If I sign from here, can I be seen? I don't want to stand on this little thing beside me, I want to press my laptop button. I'm Philip Gerard from Deaf Direct, based in Worcester and Hereford. We're local, user led and involved. Today we've learned about a number of things and I'm going to try to give you something a little bit different and also look into 65 the theory of personalisation as well. This morning the first speaker Martin, he came to our regional association for the deaf, the Midlands region and introduced this concept of personalisation to us last year and he has repeated a similar presentation this morning, which I have heard. And everyone seems to have the same concerns: how do deaf people fit in here? The same question we have heard already today. Martin had an idea. He was thinking okay, so how do deaf people get involved in this, so he asked the county council and said: could you work with Deaf Direct to give some thought to this question how services can be adapted, what they could look like, and so you could be a role model for others. In discussions with the local authority, we were looking at different models. We tried focusing on small local provision, not individual budgets at individual level, because there's plenty of examples of that. This is more about how we would model and revise a service provision. Personalisation, we've seen some examples, but there are very, very few examples to do with deaf people. We have heard lot of general examples today indeed, but we haven't got enough examples, we need more. There are a lot of local authorities who I would question whether are fully aware of the needs of the deaf communities, and indeed how little concept of how personalisation as an agenda item would benefit the deaf community yet. So the local authority and Deaf Direct looked into four discrete services that have potential, we felt. We looked into these in some depth, piloted them and we are now able, we have indeed taken the results to the commissioning managers to secure funding and this is about a service available to the general deaf population as opposed to specific deaf individuals. 66 Our telephone and translation service for deaf people I'll talk to you about in a little while. The deaf people forums that we have currently set up. Our information services. And our hard of hearing groups, the specialist groups. Those four areas are what we have been looking at. Telephone and translation service: this is an interpreting service that travels every two weeks to a variety of places in the area. So one day in Worcester there will be an interpreter available on a surgery basis as a pop in for a deaf person to come along and say, "Could you make a telephone call for me","Could you translate this document for me". The concept of this is that it's not that deaf people need help, it's that deaf people need access. This English is not their language, this written English. Most services in Worcester, Reditch and other places are English based, hearing based and mainstream. It's very interesting that this telephone and translation service has proved so popular. The sensory impairment and telly care team manager has given us her views about this service and has said that we call it the TT service, the telephone and translation service. Before we had that, social workers were left with this responsibility of doing the translations, of dealing with deaf clients in a panic because they had received a letter that they didn't understand. And waiting lists as a result of TT service being provided have gone down as far as Social Services are concerned. There is some basic interpreting and translation work that can be done in a matter of minutes in the TT service leaving the more heavy case load that requires the assistance of Social Services appropriately placed. There's a basic translation service, simple access requirements and the work 67 load is a lot better managed as a result. The sort of work that social workers do isn't basic, it's more indepth. TT do the basic. Referrals to the social work team have therefore become more manageable, a lot more realistic. The second service, the deaf people's forum: this is where about 20 to 30 deaf people will come together in a forum. It became a regular thing, well attended, a wide variety of topics. For example, why can't we access emergency services by text? What's wrong with the poor quality of equipment that we're getting a and where another deaf friend of mine is getting a really nice piece of equipment? That type of thing. The agenda is now set very much by the people, the local authority and CA B have involvement as well. They're very interested in consulting the forum on how they can improve their services. So rather than, for example, the CAB booking a sign language interpreter, which can be a very expensive occurrence if only one deaf client turns up, they come instead to the deaf forum, where they can provide a consultancy service there to a hole group of people. And they can get better informed about how they improve their service as a result. The hearing impairment team manager, again, sensory impairment team manager, again this is a very valuable resource, a very valuable regular occurrence that is attracting professionals. It's led by deaf people, controlled by deaf people and if you come along to those meetings, you've got to adjust to the deaf people's structure rather than bring along and impose your own. Hard of hearing services we've set up six groups in the counties, organised speakers, advice is given on hearing aids. A wide variety of other things. And indeed visits can be made -- home visits can be made to assist with elderly 68 people in home who need some assistance with hearing aids or cleaning of tubing, that type of thing, and have a cup of tea and a bit of a chat. That helps a lot. And a lot of those underlying things that may bubble up to something more serious are dealt with. Local authorities are very interested in that area too. Information and volunteering service is very similar to what Hilary was just talking about. We are all working together with the library service, the council services to ensure that we have a standard for information services and that you might go to the library and ask for information on hearing aids, hopefully the library will have that information. We're trying to ensure the library does, the library has the information that's required and that everyone can refer to the appropriate place. So we're doing some joined up thinking and we should all be providing a similar standard of information irrespective of our designation as a service. The work doesn't finish. It finishes in March. The concept is how those four services meet the personalisation agenda. The Department of Health and the Commissioners will be announcing -- just to let you know there will be some examples that you might be interested in, replicating, it may not suit you in your local area, it may suit you in your local area or it may not suture local users, but it may provide you with some creative ideas that may well assist. I want to finish -- I don't know if you can see this final slide. I'll just move over there. It says, "Symbols can be misleading". I want to draw your attention to the 30 per cent triangle there. We're all familiar with the wheelchair symbol and it can be misleading, because the number one cause of disability in this area, the number one group, the 30 per cent is deaf. 69 The number 2 group is visual impairment. And the smallest group is wheelchair users. Hearing impairment by far forms the majority, so we need to be aware of this. And I wanted to make you aware of it. Thank you for your attention. (Applause). JOHN NAWROCKYI: Thank you, Philip, very much for that. In the way that Michael's personal experience has brought together what personalisation might mean for a deafblind person, I think Philip's presentation has brought to light some things Martin was saying about how local authorities can do something about the personalisation agenda in this area. Thank you very much. Philip. Simon, welcome. Not quite the last but the last before we move onto deaf children. So Simon, Sense for deafblind people. No time to do introductions, straight into it. SIMON SHAW: Thanks very much. Can everyone hear? I will just quickly explain what Sense is. It's a national charity that supports and campaigns for deafblind children and adults of all ages, including older people, in our vision of a world in which all deafblind children and adults can be full and active members of society. It's key how personalisation can potentially help us achieve that end. People are regarded as deafblind if their combined sight and hearing impairment causes difficulties with communication, information, accessing information and mobility. So something that Michael was talking about this morning, it seems that part of his support plan is really looking at those areas of support. There are an estimated 242,000 deafblind people in the UK. At Sense we have been running a project about direct payments since May 2007 and it's funded by the Department of Health through a section 64 grant. So it 70 does just cover England. The overall aim of the project is to fill the gap in information and advice available. So we started off with a consultation support, we ran an advice service and support. We created some fact sheets on direct payments and purchasing your own support. We currently are providing some strange for local direct payments and support services throughout England to support them to be more deafblind aware. And we're soon (inaudible) a DVD in BSL specifically aimed at deafblind people who use sign language, but predominantly but not specifically people with usher. So as part of the consultation and also feedback from the ongoing advice work that I do and also Sense colleagues, but also those external from Sense we found some key challenges when people are using direct payments and personal budgets. There are some challenges around accessible information and advocacy. People are having a real choice about how their needs are met. So reiterating that it's not just about getting a cash payment yourself there are lots of other options and people should really have that choice. There are some significant problems around the amount the direct payment or personal budget that individuals can receive. And as has already been mentioned, there is an issue around recruitment, finding right services and training for staff, whether that staff are employed or staff in other organisations. Some people face real challenges around the extra responsibility and paperwork that's involved in managing direct payments. There are quite different issues for families and deafblind people themselves in terms of accessing a spreadsheet. So those are the challenges, but I would like to make it clear that I'm 71 trying to be positive so I'll talk through some of the solutions that we think ought to happen where people are having some problems. So as part of our research, people fed back on their experiences on the amount of direct payments. So one parent was given £6 an hour to employ a carer for an epileptic child. When I said that wasn't enough the manager said to reduce the number of carer hours if I wanted to pay more." Another person who has usher, so a sign language user was told: "The local authority were reluctant to pay the going rate but have agreed that £25 an hour is the sort of rate they would have to pay someone if they got in the service themselves for a communicator-guide BSL user." An important point about just because someone is shift to go a more personalised approach the local authority should be looking at how much it will cost them to provide that, and that could help them in terms of working out someone's personal budget or direct payment. So the local situation is obviously that local authorities award very differing amounts. The guidance is very clear there should be no maximum, and it's important that workers on the ground are aware of that. Through no fault of their own necessarily they think that the council's higher rate for people with complex needs is the maximum but that's not the case. Local authorities of course maintain that you are duty to meet all assessed needs, obviously taking into account any challenging eligibility criteria. In the case of deafblind people, local authorities have a opportunity to meet the the needs under the deafblind guidance. People may not be familiar with the guidance and it's not something I can go into a lot of detail on today, but it's statutory guidance that lays out key things local authorities need to 72 do including providing specialist assessment and one to one services for deafblind people where that's appropriate. People would like to find out more about the guidance, there's lots of information on our website and you can contact Sense and I will put the details up at the end. So it's really important that as we have said already today, communication, mobility, accessing information support needs must be taken into account when thinking about the amount of direct payments. So in terms of the RAS, resource allocation system for personal or individual budgets, questions need to be asked about communication support, access to information, mobility, changing needs and also any RAS needs to trigger that specialist assessment that deafblind people are entitled to. So what kind of services do deafblind people and families tell us that they use area direct payments for as part of the consultation we did? So communicator guides, as was mentioned, interpreters for some hours, interveners, who are people that work intensely with both deafblind children and some adults developing communication and accessing the environment. Other kinds of support workers. Every day tasks. Essential tasks. Leisure activities and social activities. Holidays and equipment. And that's obviously not an exclusive list it's just the kind of things people told us they're using their direct payments or personal budget for. So in terms of helping deafblind people and families find of services, first of all we need to make sure people have an appropriate rate. Some people said recruiting people locally can help, but finding those people locally can be a challenge. Michael earlier said that he decided to get support from people he knew already and that worked well for him and that seems to be the case for some 73 people. And also some people did say that employing family members who live in the same house as them was one way to meet their needs. Obviously there is some strict guidance in place around whether that's appropriate or not, but it's not impossible that that is a way to meet needs. In terms of what Sense is doing, as well as providing services to people who use personal budgets, we have also set up the deafblind directory where people can search for individuals, agencies, who offer services. It was only launched in September so it's still relatively small, but you have flyers in your pack to log onto it and see what's available in your local area. If you think something is missing from your local area, let me know or them know about it and I can send you some information. I should just say Sense is just facilitating contact between individuals and providers, we don't take responsibility in terms of the service provided. In terms of managing direct payments, people have told us that the administration is demanding, financial returns can be difficult. After one year, one person was told how they should have been dealing, managing with the direct payments. So information hasn't been getting through on that kind of level. That just goes back to my point about making sure people have full information and advocacy where necessary. So an example of good practice in direct payments support services Social Services a deafblind man who uses braille and deafblind manual and he uses his DP for help with pay roll. So he gives them the hours his staff have worked -- I think he employs three or four different people -- the support service send him pay slips with two staples in the corner so he knows what it is. They stick 74 braille stickers onto each pay slip so he is in control of who gets what pay slip which is important because people are paid different amounts because they have different skills and qualifications. So the end result is that confidentiality and control is maintained. This deafblind person takes on the responsibilities he wants and received appropriate and accessible support for the rest. This obviously isn't a blueprint for all deafblind people, but it just shows how a service can just listen to an individual's preferences and at the cost of two staples and some very cheap braille labelling, it works for him. So again, we've talked quite a lot about user led support and how that fits in with when people with sensory impairments need specialist support, so again it's about making those services aware of the needs of deafblind people specifically and again around resources, and I think that point about the DDA that's just been made around services needing to fulfil requirements in terms of how people access the services is really important. Just a quick bit about self assessment and brokerage. We obviously welcome the fact that individuals should be increasingly listened to and have much more choice and control in shaping their own support plan and the outcomes from it, but we do have some concerns what that requirement that deafblind people have a specialist assessment, so input from someone who is a specialist is lost in the self assessment process. An example would be perhaps an older person who doesn't identify as deafblind, has a very significant dual sensory loss, does not know what a communicator guide is, hasn't heard of Sense or Deafblind UK so they need a specialist who can really make a difference and make personalisation work for that person. Individuals do need to know that even if they have been involved in the self 75 assessment process they do still have the same rights in terms of challenging outcomes and assessments. I think we've talked a lot about how brokerage needs to be relevant to people with sensory impairment, and I think there needs to be some more work by organisations as well as local authorities and government about how people can be supported to get the most out of this agenda. So in terms of contact for Sense, I'm happy to talk to people both individuals, families and professionals working with deafblind people. Those are my contact details and the link to the parts of Sense website. Putting everyone first is a document we have produced with a number of other voluntary sector organisations including RNID that's guidance about how to make a resource allocation system work better for people with sensory impairments and other kinds of specialist needs. The final link is for the deafblind directory, the directory which provides services for deafblind children and adults. We have some copies of our publications in the food area and we can of course provide anything in alternative formats as well. There's an order form if people don't want to take stuff away today but would like us to send things out to them. JOHN NAWROCKYI: Thank you for that, Simon. Thank you for bringing us back on time. Well done. I think those four presentations together have been quite complementary. They have given us a feel of the how specialist services might be developed by a local authority. It's given me a vision I didn't have at the start of the day and how direct payments might be used to procure services which I'm not aware of at present. The example from Philip was excellent. I think for me the past hour has been a vivid demonstration of how we can 76 develop something special around a personalised approach for deaf people. Thank you for four contributions for that. We're going to change tack slightly: I believe that Christine is going to take us into a presentation and discussion about how this might apply to developing services and meeting the needs of deaf children. So Christine please join us at the table. CHRISTINE LENEHAN: Good afternoon. I am going to go through issues for personalisation and disabled children. They are much, much less developed than in adult services. The children's services, we are still very much on the start of the journey. Also we have to be really careful with children's services. One of my favourite quotes comes from an investigation into the Bristol royal infirmary on challenges for children which led to the setting up of the national services framework for children. A quote was that the health service saw children as small are adults who just needed smaller beds and smaller portions of food. The world of childhood is different. The cultural context that childcare operates in is different. The legislation is different. So just saying what we have learned from adults we can directly transpose onto children's services isn't accurate so. We are at early stages, but let me show you where we're at. The first thing we're at is what is personalisation? It's quite interesting that when you talk to politicians and had you talk to senior managers about personalisation, personalisation equals money. It equals direct payments, it equals individual budgets. But personalisation as a concept of course is much, much greater than that. Children and young people, we have been looking at person centred planning 77 proposes, particularly at year 9 transition reviews. We have been looking at personalisation within service delivery. I have been looking at examples about how residential childcare services can be personal, how schools can be personal. I have been looking at personalisation across education, social care and health. And often combining elements of all of those services into one child centred package. But primarily when people talk about personalisation, they talk about money. So in this presentation I'm going to talk about money. I'm going to look at the key current initiatives on individual budgets and discuss some of the emergent issues for children. Okay, there are three big initiatives. The first one is called "taking control". You will probably have heard today at some stage about the "in control" pilot programmes, which are the adult version of this. Currently in "taking control" there are 35 local authorities involved. About 220 budgets now in operation. But you can see that in doing that we're still looking in most places at less than 10 budgets an authority. So we're still looking at very, very early stage development. It's also linked to how government's taking forward in children's services and what's called budget holding leading professionals, very small budgets provided for children who are at risk of entering the social care system, and with that, those budgets are about 2,000 budgets in operation. Almost all budgets to date have been a combination of social care money with a bit extra, often from youth and leisure, statements from transport, sometimes in extended services. The first budgets for health are just coming through. Very, very early in children's services. We think there are less than 20, but 78 they're beginning to come through. The Aiming High for disabled children -- sorry about all the initials -- short breaks programme has encouraged local authorities across the country to use individual budgets as a way forward for delivering. I think that 900 per cent right, I think that probably should say 700 per cent rise, I think that's my typing -- in individual budgets for what are called path finder authorities. So 21 local authorities in England started this process a year ahead of everyone else. That figure looks impressive, but if I tell you that the starting point was about 20 children, you can see that however hundreds of per cent of rise is we are still on a couple of hundred children. For non path finders -- so these authorities started a year ago -- there's been a 71 per cent rise. However again, this is a very, very small place to start from. I was interesting in coming in and listening to Simon talk. You will see that below that, the great majority of local authorities provide support services for children are support -- finances, book keeping, pay roll, Inland Revenue, et cetera. I think that is true, but it started from nothing, so we are still at early stages in terms of this developing and the level of sophistication that Simon gave in his answer quite rightly for a deafblind user certainly does not exist yet in children's services. The biggest piece of work that's government led on this area is that there are six pilot local authorities across the country investigating in some detail -- and I'm going to show you their questions in a minute -- what the implications are in moving towards individual budgets as a model of delivery. They are the six. They are Newcastle, Gateshead, Gloucestershire, 79 Coventry, Essex and Derbyshire. For of them -- and I have to remember which -- are working with young people in transition. So they have taken a specific goal of working with young people at 14 plus. It will come back to me which four they are in a minute, but it's all on the website. Which is where most of our development of children's services. There is very, very, very little development in this for pre-14-year olds, although two of these authorities are looking at pre-14-year olds. What did we ask them to do? Well, these are some of the issues that dominate the life of children's services. Some of them will be -- to adult services, some of them will be different. The world of children's services in the last two years, especially since the death of baby P just up the road from here has been absolutely and utterly dominated by safeguarding. That hasn't always been helpful for disabled children's services. In fact at times it is distinctly unhelpful for children's services. That is not to say that disabled children do not need to be safeguarded. They absolutely do and we know the issues about vulnerability. Actually deaf organisations have often led the way on exploring those issues. But what that sometimes means is we par lies local authorities in their ability to find creative ways of working and local authorities at the moment are struggling in resolving the issues around safeguarding and personalisation. In fairness to local authorities, they are getting very limited good advice on how to take those issues forward. There has been big issues for children's services about pots of money, because the adult budget streams don't exist in children's services in the same way. We are working all the time in a set of competing ideologies. The government has produced an education programme which means schools can turn 80 into fortresses, they can ignore the world around them and then they wonder why we can't get any money out of them. So we wouldn't wonder is this process-i'm a social worker by background -- is this about my endless section 17? When you worked in Social Services, if you wouldn't couldn't find any money you called it section 17. So is it just section 17 or is it different money in local authorities? Can we actually take education money? Can we look at health money? So if you take an example, parents of deaf children have told us that actually one of the things that will make the most difference in an individual budget process for their children is to make sure that the communication of their children is understood by everyone in that child's life. And therefore having the pool that provides for 24-hour consistency would be the way forward. Trying to extricate money from across that system is a challenge, and we need to look at it. We're interested in equity and we're interested in equity because my reading of the evidence in children's services to date is that if you throw enough money at six children in a local authority who are the most -- who are from the most articulate organised families and have the most organised circles of support, it doesn't matter what you call it, the outcomes will be better. However, if you try and introduce that system across a whole cohort say of young people at year 9 review, can you do that, or are we disproportionately changing the amount of money available locally so the most vulnerable need it. So we're interested in equity. What has happened in the adult world that in children's we can embrace. But we're also interested at this stage in understanding when children are different 81 and why children have to be different and we're interested in learning about transition. We are always interested in learning about transition. What we're also interested in is outcomes. Does this approach make a difference to the outcomes for children's lives or is it just another way of moving the counters round a square? Find findings so far -- still early. These pilots started last summer, but you see from here that areas with previous experience of personalisation saw they were taking control, pilots, for example, or whatever, made the fastest progress. There are some local authorities even in pilots that are really struggling to make progress on this issue. There has been some extension of funding into health. Small, early days, but it's there. And some extended funding into extended services, so after school, holiday services et cetera, and transport. Some in relation to things as well like equipment, which might be interesting for us. However, we still need to work with the widest range of partners. This is very much a social care led philosophy for children, but therefore is still quite hard to get health on board, quite hard to get schools on board et cetera. And people haven't always understood the level of support planning and advocacy that needs to go with it and that in children's services is still an issue where it's under discussion in terms of what happens. So very tentative slow process for children. But on top of that the individual budgets pilot group have also just established some thematic reviews and these are key challenges on a wider basis and these are the ones we expected. Safeguarding individual budgets, we have to have some guidance, we have to understand where a safeguarding and a choice and control dynamic work 82 well together and what that balance is. We don't understand it yet for children. The issue about engaging hard to reach. I don't think the families are necessarily hard to reach, but clearly the services aren't reaching them. But what it is about equity, because the profile of the families coming forward to receive individual budgets matches the profile we expected. The most able families, the most able families in terms of support, what happens to the rest? The issues about resource allocation. The adult world is dominated by something called the RAS, which is the resource allocation system. We haven't got one that works for children. We can't make it work for children yet. Is it the right model for children? What are the models of funding for children that are different from adults because children don't exist as individuals apart from their family circles, so you can't take an adult model that looks at adult competence and say equals so many points. You have to look at a child as part of their family network with the stresses and strains on that family, and also you have to be clear about what the other issues are. So some research into differing models of allocating resources. And for children's services, building on some of the adult work, service planning and brokerage. We don't know yet what this means for children, and again what difference it has to be for adults. We're interested in the future, because you will know well enough that all of the major parties are committed to increasing the speed and the range of personalisation approaches. Part of my job for the children's sector is to negotiate with politicians. Whenever I go near any of them at the moment, including the Conservatives, their answer to personalisation is: further, 83 faster. My worry about that is not that you can argue with choice and control, or you would want to, but I'm old enough to worry that when anything is portrayed as a panacea for all ills, then actually that's not good enough. Personalisation for children has to be part of a menu and a range of approaches, it isn't a single magic bullet that will transform services. Our challenge in terms of children's sector -- because this is very early days for children but, and it depends on the outcome of the election, but whatever the elected party is, the issues for children are likely to be rolled out very quickly. So we have between now and the Queen's speech of the new government to decide as children's services what we think. So I'm going to tell you what we're doing. Think in terms of deaf children, the sing biggest issue that is different is access. One of the things the Council for Disabled Children has been doing for the last six months following a ruling against Islington council as it happens, is actually looking at the eligibility criteria for social care services for disabled children, including those that are deaf. You will know that we have a myriad of definitions of disability and you will know that the narrowest definition in the land is eligibility criteria to access services. We have been working with local authorities on when the rules are on eligibility criteria, and I would worry that for many deaf children personalisation would not be an option because they would not qualify for services in the first place. Obviously children with multiple impairments may well, but again, I think we have some challenges we need to take on. 84 The other thing about personalisation is if this is about money then you have to be able to provide the right support. Again, if you're looking at children with specific communication needs, then the market place has to be established to buy that from. When we first did the research on direct payments, we talked to families across the impairment range and we said: if you had direct payments, what would you do? Two groups of families came back and said: if we had direct payments we would set up our own services because we do not yet believe services meet our needs. They were, children with autism and children who are deaf. Families of deaf children said at that stage-and this wasn't that long ago -- they did not feel that their needs were currently catered for by the range of provision. The other thing about personalisation which affects the voluntary sector is that a lot of voluntary sector services are commissioned through block contracting. So you are given X amount of money to run a play scheme for 20 children, let's say, or whatever. If personalisation comes in as a strong agenda what does that mean for commissioning? What does that mean for contracting? What does that mean for spot purchasing? And there is an issue for the third sector in particular in terms of service provision to sort that out. So what is the Council for Disabled Children doing? The Council for Disabled Children acts as a consortium of children's organisations working to influence change. In terms of deafness, NDCS and RNID are members of the council. Currently we chair the individual budgets reference group on the pilots that Simon in fact is on who you just heard. We are working with third sector 85 organisations on the implications for children's services. So we've just brought together a group of very different voluntary organisations and said: what is it that matters? What do we need to know? What do we need to understand? What do we believe? We're also doing the same with the association of directors of children's services. Because children's services in local authorities don't know what they want out of this yet. And again, they are being represented by the views of adults, and this is fine, but again we need to look differently for children. So the first meeting of our work with the association of directors of children's services group starts this week. And we are also working with the Department of Health on personal health budgets and children. What we're hoping to do by the summer is to pull all these issues together is that the sector across its many views has a position statement. And it's interesting, because direct payments, individual budgets, personalisation as a concept are an amazing opportunity to change lives. You know, when you see it working, when you see the difference, it makes a massive difference to change lives. For me, I started working with disabled children in the late 1970s. My first job was to work out will disabled children could live outside of the long stay hospitals. And whether community services could work. It was a massive, massive cultural change. I can still remember my first days on those wards. People saying to me, "These children can't live outside". Interestingly, of course, the children that I worked with then are nowhere near as complicated as the children who live in the community now. But dealing with the cultural change from hospital to community was massive. I think personalisation requires 86 the same scale of cultural change as that did then. But for me, at the end of it, it's also about being clear how it will work. Whether there is enough money to meet lead. I like your debate. Is this an excuse for cutting services? The challenge is in the political position we find ourselves as it could be. Can we ensure equity? Do we have a skilled workforce? My message to you is the time for children's services to engage in this debate is now. We can't leave it any longer. (Applause). JOHN NAWROCKYI: Thank you, Christine. Again, we have insufficient time for a proper discussion, but we have just five minutes if anybody has any comments or questions. FROM THE FLOOR: Sharon again. I just have a couple of questions. Somebody was speaking about self assessment. I think it was the fellow in Sense and talking about encouraging the council to do self assessments. In my team, I've actually got some examples for assessing any new people. So it may be worth meeting the people afterwards to discuss them. I know I have been discussing with my manager built idea of actually establishing a separate form, but they weren't interested in that, they really wanted everything to be mainstreamed and having some kind of consistency, but actually for us, it was more about having some additional forms we could attach so it was more detailed and specified according to people's needs and not actually to have a mainstream form. But what I would like to know actually is do different areas have different forms? Are they national or are they different? Because if they're different, maybe what we could do is share them and work out what we could compile 87 together, because actually I'm sure we've probably got very similar questions, but different forms, and people do fill their own in. So I think I had to create mine. I had to use some guidance from people around me, but I think maybe there could be some really useful networking here. Secondly about children's services. In my area, we have no special services for children, it's just disabilities. As you said, you know, disability, people who have high needs that are disabled are going to be met, but not necessarily deaf children. And the concern that I have is about deaf parents of deaf children, because when the children come home from school, if they've got a PA who's paying for that? Is it the adult services, child services? Because it's the child's need to have it, but then the adult service is paying for it and it starts to get quite convoluted and it's a debate about where the money comes from. I would be interested to hear your point of view. CHRISTINE LENEHAN: For children there's nothing like taking the most difficult question first. We are nowhere near sophisticated enough to answer that question yet. I think you're right. If deaf children need a PA then children's services should pay for it to meet the children's needs, but we're not at that point yet. FROM THE FLOOR: Back on the agenda. FROM THE FLOOR: I want to pick up on points made by Philip and Hilary -- I feel that deaf people are still catching up. We have DDA but it's not implemented in a lot of places and now we have this new thing personalisation and we're still trying to implement what should have already been implemented. So I'm concerned whether money that should be coming to be used in general services would be used to implement personalisation. I'll give you an example. A person who has 88 mental health needs may want to access, say, a specialist voluntary organisation which provides support for Muslim women who have been abused. Lots of difficult issues, maybe forced marriage, that type of thing, but they can't access themselves because they haven't got an interpreter, so where do they get the money if to pay for an interpreter for that? Shouldn't that be personalisation money, whereas in reality as a voluntary organisation, surely they should be fund the from the local authority at the commissioning point when they have been commissioned to provide that service? But that doesn't happen and I think a lot of voluntary organisations like alcoholics anonymous and others are not funded to provide access for all services. So how do you go back to the local authority and say when you contact the organisation you've got to include access for all as part of the criteria and some of that has got to be money for interpreting services for deaf people and that goes back to what you were talking about, about access of deaf people to information. It's a general responsibility, a general obligation on all public services to provide access to information, but they're in the meeting their obligation at the moment. JOHN NAWROCKYI: Thank you. Care to answer that? Quickly from a council perspective then we'll break for tea. It has to be a question of prioritisation, because at the end of the day we do have a fixed budget and I've got what's called a duty to taxpayers so we have to check we've got the appropriate priority. So if we identify our local needs, dot needs of deaf people and deaf children figure sufficiently highly in the priorities of the local council? So equity is not just about access to service provision it's about having equitable priority in terms of how the local authority dispenses it's resources. 89 We have to think about making services for deaf people come higher up the priority list. FROM THE FLOOR: Just an immediate question. Are you talking about numbers of people? Is that what you're saying? To make it a priority? How do we do that? JOHN NAWROCKYI: Just in terms of resource allocation, how we divide up the budget. So do we need to spend less on learning disability and more on deafblind services? FROM THE FLOOR: I do apologise to interrupt, but the prioritisation of services based on what? I think I missed the point of the whole day. The point of the whole day is about a minority of people who should be -- there should be a well co-ordinated service to meet their needs. We're in the talking about priority in terms of numbers here, surely? JOHN NAWROCKYI: No, I agree. If I expressed that badly, I apologise. That's part of point I was making. I'm afraid we must break for tea now. Sorry back there, Stuart. Let's reconvene at 3.30. (A short break) JOHN NAWROCKYI: Shall we start the final session, please? I think we are ready. We have until 4.15 and we'll finish at 4.15 sharp, and I'll just spend two minutes summing up. So we will be away by 4.20 for people that have trains booked. So we have 40 minutes now for this session. Tom Noon from Cordis Bright is going to start us off with something I find provocative. Michael will say a few words from the RNID perspective, then John Adams has some slides as well. Then about 25 minutes of floor discussion and then we'll finish at 4.15 90 prompt. So over to you, Tom. TOM NOON: Thank you very much. I think I will stand up actually, if that's all right. Personalisation: this house believes that the personalisation agenda is a cost cutting exercise and will not benefit deaf people. I realised after a read my presentation that actually I was closed to this. So my response is I think that personalisation in fact affects all people are require or are eligible for state funded social care. I think there are lots of different reasons for that. Partly it's about equity, or more or greater equity with people who are private payers of social care. It makes that critical link with money. We have had person centred planning for many a year, what's different about personalisation is that connection with funds, the actual connection with payment services. I think it does enable people to increase control and to increase choice. I don't think it's absolute. I don't think it's total freedom, but I think it does increase that, it moves people further towards those sorts of things. I think it's also true to say, I think that local authorities are quite uncomfortable with the idea of choice and control, and indeed quite a lot of the work that goes into personalisation at a more corporate level is about trying to re-exert control by local authorities, providers lists, or ways of trying to drive down cost. Personalisation is not in and of itself a means of reducing social care, that isn't what it is about. There are going to be reductions in expenditure on social care whatever happens. And the fact that this has come in at the same time as personalisation is being introduced actually isn't -- the two things are not connected. They have become more connected as we have gone forward, but 91 there are going to be cuts in social care in terms of expenditure on social care. And I would expect them to be I have said here 5 or 10 per cent, I would expect it to be more like 15 per cent and I would expect some of those cuts to start this year, and I suspect they are going to start some time around June of this year, which is when I expect to do the budget. The resource allocation system which is absolutely integral to the way in which personalisation works, the way in which funds are allocated to individuals is, I have to say, at the moment being used as a means of reducing funds. I have hardly met anybody and I have lots and lofts contacts with providers, people who use services who go through this, I have yet to meet people who have increased funds as a result of going through the resource allocation system. As a result of that basis I think there are two possible conclusions. One would be what is happening is there has been a huge overestimate of people's needs which has been going on for years and that's why the resource allocation is correcting that. Or at actively of course is may be we have actually boon overpaying for social care services and we now believe that actually individuals may be better placed to make better purchasing decisions as a result of personalisation. If there's one bit of the personalisation agenda that I am uncomfortable with, it's probably that bit, that expectation that people will be able to not just make choices but to implement those choices, and I think we're not very clear about how that's going to happen, because I would argue that in fact local authorities with full professional expertise have struggled to make those sorts of choices and to implement that, so it's very heard for individuals to do that my conclusion is don't blame personalisation for cost reductions in social care. 92 There would be cost reductions anyway. It's nothing to do with personalisation. The issue is about transparency and it is about maturity of relationship between local authority and the between the individual, which is basically saying actually yes we do need to reduce expenditure on social care because we have less money from central government. And there is part of me which thinks that actually cuts in social care expenditure are better done on a person by person basis rather than simply trying to cut the budgets of individual services. Bizarrely, personalisation may in fact be the fairest way to cut expenditure on social care and I shall stop there. Thank you. MIKE ADAMSON: So personalisation has to be a positive thing. It's the least that we would all expect in the service that is we use in all parts of our lives. So it has to be a positive thing in its broadest sense and we should embrace that challenge. And I don't think it's origins were cynical ones in terms of trying to cut cost, but there is a danger that the rhetoric is well ahead of the reality. And that in combination with an environment and public sector funding squeezes that actually it will be used inappropriately. April 2011, which is notionally the deadline for completion of a lot of the preparatory work and quite a bit of the roll out of individual budgets is almost upon us, and the best of our intentions around personalisation may in fact become overwhelmed. We have heard today that the research and evidence base is immature, it's not complete. It's also out date, because it was on a different model of delivery of individual budgets. We know that the market is immature. Just look at the shop for support website. It is a good start, it's where you would start perhaps in terms of 93 making more information available, but certainly not a mature way of sharing information about services. If you go through the joint strategic needs assessments of local authorities, the needs of people with hearing loss are not always visible. There are a number that we have been through which simply don't mention the needs of deaf people, but we know they have quite significant deaf populations. So again in terms of using those tools that are again local authorities and Primary Care Trusts have to implement, they're in the mature yet in terms of identifying a full range of needs. And we heard John give us the challenge earlier which is to say there is a fixed budget. He can't invent new sources of funding simply to add services or better support for client groups we think are important in relation to others, so it's absolutely critical that we as a group of stakeholders both commissioners, providers, start to gather an evidence base and start to use the language of the moment. So not only should we be talking about outcomes, we should also be talking about social return on investment in order to make the case that the individual and then the collective level in terms of people we support, there is a really strong business case for why the overall return to the public purse from investing in services for our client groups is really important. So we have to develop the conversational tools and engagement language that actually Social Services directors can use and engage with. So I think that overall personalisation in its broadest sense really will benefit all people with hearing loss, not only people with profound disabilities, but people who are disadvantaged and excluded in other ways that are hidden. But actually getting there, there is a real risk on the way that we lose some people so. We must develop the tools to address that. 94 NEW SPEAKER: We're a bit like the three wise monkeys here, not saying which one is which! The sharp eyed amongst you will recognise our realise that I'm not Jenny Harlock who was billed on your programme. Apologies for that, Jenny is unfortunately not well so I'm standing in at quite short notice. And using her slides. The difficulty of coming last amongst a very long list of speakers is that most people have said everything you were planning to say in any case, but I do come -- I am also conscious that I stand between you and going home time, so I'll try and be reasonably brief. I do come with two good bits of news or two good bits of good news which you may not yet have heard. The first is we're officially now out of recession, but only just; and the second thing is Murray is through to the semi final! Some of these organisations on this slide, members of the voluntary organisations disability group, VODG you will recognise. Many are large service providers and we're delighted to have Sense, RNID and sign health among our membership. Collectively members of VODG deliverable about £140 billion of publicly funded services, clearly a lot of money and a lot of services to probably about a million disabled people. Most of that money comes through local authorities. But much of it is still tied up in traditional services, and with just 60,000 people nationally on direct payments and care managers, many care managers continuing to purchase traditional services, it's not surprising that as Mike said earlier service provider organisations find it difficult to know how to transform their services and the government talks a lot about service 95 transformation. So one way or another, what you have been talking about or what why are speakers have been talking about here all day is personalisation and it's quite clear that it's not a single thing or approach. Sometimes it's described as a journey and not a destination. Its development clearly goes back to at least the mid-90s, started by disabled people and third sector service led organisations, but it's clearly influenced the government's vision for personalise the services, that is giving people power over the services that they purchase, that they use. But will personal individual budgets or the right to control which will allow people to combine funding streams -- and that's been piloted this year -- fundamentally transform services and support deaf people in the way that's envisaged by the government? In short, will anything change, or is it all an illusion, rather like the -- The IBSEN report is the most comprehensive review of people on individual budgets. Around -- people are a individual bundle, and by March, just two months away, the Department of Health estimates of number will rise to 200,000. So from 15,000 to 200,000, so we really are talking about transformational stuff here. By 2011 all local authorities are required to have moved at least 30 per cent of all people who use publicly funded adult social care onto personal budgets. Now, the IBSEN report -- and you can see some conclusions on this slide -- but very briefly there was very little difference in the average cost of individual budgets and conventional social care support which reinforces something that Tom just said. However, implementing individual budgets 96 nationwide would require substantial investment including staff training. Satisfaction varied between client groups, and you can see that, and it was highest among mental health service users and physically disabled people, and satisfaction was lowest amongst older people. And of course the population of people who are deaf, many of them are older people. So what's the relevance of all of this to deaf people? Well, as Mike and Tom said, any system that supports individual choice is of course to be welcomed, but how many deaf people currently receive adequate levels of support? We heard earlier about the RAS and eligibility criteria, and will the particular sensory needs of people with deafness are recognised. So how many currently received adequate levels of support however that support is delivered? How many in fact currently qualify for social care given ever tightening eligibility criteria? And we know all about the numbers of people with learning disabilities, with mental health problems, who don't get over the threshold of eligibility criteria. Some of them become lost in the system and many of them end up in the criminal justice system. And our prisons sadly are full of people like that. There remain major obstacles for deaf people when navigating the NHS and social care system. There are mainly obstacles in getting timely and relevant information. We heard about Sense earlier, the work they're doing. Or indeed the support of an independent broker to help them understand their rights. There simply are not enough independent brokerage schemes around due to funding constraints and there's not enough independent advocacy. So in order for the market to be transformed, new and flexible more personalised services will need to be available, but where are those services 97 going to come from? The idea is you just give people the money, they will create demand and people will develop services in response to that. But there are considerable risks for providers with uncertainties about funding and all of the financial and legal risks associated with employing staff, entering into contracts. We have heard people say how do you recover debt from an individual disabled person, for example? How do you enter into an employment contract had you have only got six months funding agreed? So on and so forth. There's little evidence, it seems to me, that there's any real strategic commissioning at a local level and what's required is much improved dialogue and a fairer relationship where the risk is more evenly balanced between the -- Are able to respond to changing expectations and this has to be done with the service user at the centre. Just lastly on finances and Tom has touched on this, we have all heard about -- we're all aware of the demographic trends, the growth in the number of people over the age of 85, growth of numbers of people with dementia, and growth in numbers of people with learning disabilities who are surviving longer and particularly those with profound and complex needs. Local authority directors, if I may say so, are in a very difficult place. We know about those demographic trends and combined with assumptions about increases in the price of care and support services, that leads to projections by the government that net public expenditure on social care of adults for all ages will reach just over 24 billion in 2026. You might think: what's that got to do with me as a deaf person? That rise to 24 billion by 2026 represents an increase of 108 per cent in real terms since 2005. That's a huge growth. So recently you'll know the government's had its big care debate about the green 98 paper on how are we going to pay for all that additional demand. And partly that debate was designed, one might argue, to wean us off the idea of reliance on general taxation as the solution to all funding problems. But at the same time we heard the prime minister Gordon Brown stand up at part conference and announce free personal care to all those with highest needs. As the Parliamentary passage of the personal carer home bill draws to a close, it seems likely that from next October, those with the highest needs should get their care at home for free. Incidentally, the 670 million the Prime Minister was able to find, that is going to cost the taxpayer 250 million of that 670 and has to be found by people like John from efficiency savings. Here's 670 million, 250 million of it you have to find from your own budget. Yet 2010 has already shown that a week is a long time in politics of social care funding. Recently the liberal democrats changed their position on a promise of universal care guarantee, but said they will still support that when it becomes affordable again. For the Tories that was never on the agenda. So it seems to be a case now of either free care for the few not the many -- labour's position -- for the many when we can afford it, the Liberal Democrats position, or for nobody but the very poorest, the conservative position. Debt will increase in 2010/11 to a staggering £986 billion and we've not yet felt the effects of that in social care despite rationing, eligibility criteria and all the other instruments used. So to finish, the overall picture is fairly clear. Alistair Darling set that out in his pre-budget report. While front line spending in education and policing are going to be broadly protected, all other areas of central and local 99 government will face substantial cuts and I'm saying the same as Tom, I agree with you, these could be as much as 50 per cent over the next four years. Direct payments, individual budgets, personal budgets are not about more money in the system, it's simply using the existing funding differently. And there are clear questions about is the social care system adequately funded or not, and what implications does that have for people who are deaf and hard of hearing, and how does that relate to personalisation? JOHN NAWROCKYI: Thank you, John. Thank you, Tom, thanks Mike. Any questions, comments, reflections? Please target the panel if you wish. FROM THE FLOOR: I'll speak. I'm too nervous! Lesley, social worker with deaf people from sand well. I just wanted to make people aware that with their access to work criteria, do people know that there are certain classic categories for some people who might not be working in local government or social workers, it's about critical, substantial, moderate or low. At the moment, 87 per cent of all local authorities work to the critical and substantial criteria. And the rest only work on critical. And only one local authority and it's a borough in London, I'm not sure which one, that operates on moderate. Only one. FROM THE FLOOR: Derbyshire does as well. FROM THE FLOOR: Oh this is the information I was given, it's not me making it up. So one in Derbyshire. FROM THE FLOOR: Derbyshire still has that try tear criteria. FROM THE FLOOR: The one in London is Hammersmith. FROM THE FLOOR: If you think about it at the moment we're looking into eligibility criteria, so the way I see it in the future is that this is going to 100 work on only critical, not critical substantial, so that figure will change. Then we are talking about cuts of up to 16 per cent per year, or 16 per cent over four years. We think we may be standing still with the existing budget but with an increasing number of people making demands on the budget. What does that mean? No one talked about supporting people, local support, but to help people maintain their tenancy. No one talked about that either, because that is being cut or they're asking people that have already been -- where do they go, because they don't accept the criteria. All we have left is services. In some areas you might have a deaf advocate voluntary coordinator, volunteers, but it's very patchy and very small. So for me I think I may as well pack up and go home. I feel that deaf and hard of hearing people and deaf children are not going to be any better off with the RAS with the personalisation, nothing. Sorry. Thank you. (Applause). JOHN NAWROCKYI: Any immediate response from the panel? NEW SPEAKER: John. I will. TOM NOON: In fact, the number of local authorities on critical has declined. The norm we're heading for is substantial. That's where it's going to level out. And I still think that we're conflating two issues. We're conflating cuts in public expenditure which absolutely are going to happen right across the board and we're sticking with personalisation and they're not the same thing. We're sticking those two things together and actually they're separate things. FROM THE FLOOR: I'm Paul, I'm involved in several deaf people's charities. I 101 was very taken with one of David Challis's slides this morning in which he shows the sample that he has been looking at. There were far more young people than there were old people in his sample. That's interesting, because of course overwhelmingly being deaf is a condition of old age. For every young deaf person, ie somebody who has either been born deaf or become deaf at school age, there are somewhere between 10 and 15 severely and profoundly deaf old people the majority of whom have lost their hearing in middle and late age. Some of them have lost it traumatically. The majority this lost is progressively. So what that slide was showing us is the vast majority of these elderly deaf people are just simply not on their social care team's radar scheme. They're just simply sitting at home suffering on their own. So to me one criteria of personalisation is does it give us a tool to reach out to the absolutely massive market of deaf elderly people who at present aren't getting any support at all. The other implication is that because these people have lost their hearing later in life they have no experience of sign language. They have been brought up in English, they have English friends, English families, they need support in English. On the other hand, as of today, the number of registered speech to text reporters in the UK is 21. If you make an assumption about how many hours a year those magnificent ladies can work divided by the number of deaf people who should be receiving that sort of support, you end up with a figure of something like 3 or 4 minutes per year per deaf person. So the other criterion I would provide is can we use this as a way of 102 shifting the balance of the support that is available to make the needs of the predominantly English speaking elderly deaf market? JOHN NAWROCKYI: Mike, I saw you making notes there. MIKE ADAMSON: I think it's an excellent point. If you think about putting people first and the whole range of ambition within it about universal services. What Paul is talking about is a group of people who don't see themselves as disabled anyway, to be honest, they see themselves as just getting on with their lives. We know there's between half a animal and a million people who are sufficiently deaf not to be able to use a telephone who would benefit from a whole range of services if they knew then. We are all going to be working longer as pensions no longer support people to retire at ages previously possible. There are going to be more and more older people in the workplace suffering hearing loss and who are going to become progressively excluded from every day meetings they have historically taken part in. They're in the aware of their rights to access to work budgets for support, and there's a whole range of things that we should be trying to do to increase the number of speech to text reporters, to and look at new technologies like voice recognition technologies that may actually increase the ability -- increase the supply of people such as that, and raise awareness. So I think it's a huge issue but it's a different -- it's the same underlying principle but it's about access and the points Christine made earlier and we must assure those access points are not lost for those who are not seeing themselves as disabled. JOHN NAWROCKYI: Lady in the corner. FROM THE FLOOR: I'm a service users in Derbyshire. I do agree that Social 103 Services do have a budget, the Director has to make very, very hard decisions sometimes, but it isn't always the Social Services who have a responsibility. Other people have a responsibility as well. Because you talk about fair access to care services, the chronically sick and disabled person's act has not been overtaken. So if you have a person you are working with who isn't getting the services, you use the act, you use the DDA, the Disability Discrimination Act and other issues. It isn't always Social Services's responsibility. I used the DDA I took my local authority to court and I won around my deafness issue. So you do have to use other things and don't always think, "I'm giving up, it's not going to work", because it can work and you can make the RAS work. If you think of the DDA, the disability benefits, how we struggled to get disability benefits for people who were deaf, it's the same with the RAS. You have to use that RAS and use it in a way that will get deaf people an equal share the budget, but it's just remembering to use other things not just Social Services. JOHN NAWROCKYI: Let's take another contribution before the panel responds. This gentleman. FROM THE FLOOR: Just a question here. Care and need. There's a confusion. Access to communication is what deaf people really need to carry out functions going into society. In personalisation programmes access to communication is not included with care. How do you overcome this problem of access to communication where the most important problem is our need. We can't get substantial or critical because we're not on that level. Whoever thought that deaf people's communication is not important. It's critical. Crazy. JOHN NAWROCKYI: Thank you. After the panel responds we'll just have time for 104 two questions that are being signalled over here and here. I think people have got trains to catch actually. We'll stop with these two questions here after the panel's responded I think the question was about the restrictions in the criteria. NEW SPEAKER: John. I think the point about using other systems, other parts the system is absolutely right. There's a new pilot project called "total place" which is about how does the whole community work towards supporting you. I know you're making a specific point about using legislation, but I agree with that. The point about the criteria and resource allocation, I think the point has already been made well today that sensory impairment is often not recognised in those systems, and we need to make sure we need to campaign to make sure that it is adequately recognised. There's in easy answer to these things. The system is under tremendous strain. 12 years ago, whatever it was, before Tony Blair was first elected, he said that it was completely unacceptable that elderly people had to sell their own homes to fund their own personal care support. The fact is 12 years later people are still doing that. So you have to ask yourself is this a political priority or not. In the dying days of the government we've suddenly got social care pushed up the agenda. Will we see a white paper before the election? JOHN NAWROCKYI: Thank you, John. Two more comments then and we will have final comments from the panel. There was a lady behind you. FROM THE FLOOR: I'm agreeing totally with the focus on facts. If you can get -- then you get into RAS. I work for new ham and I'm taking places to panel on behalf the deaf people. What I am finding is money is being taken away in 105 learning disabilities because they have the biggest chunk the pie and I am being successful getting deaf people money. So I think also Newham is looking at funding their shortfall by getting rid of social workers. So they're looking at with personalisation you probably need a reviews officer who you can employ at half the cost, somebody who is responsible for finance, which is obviously cheaper than a social worker, so there is perhaps looking at other ways of saving money not necessarily cutting services. What I would like to say is also how much are organisations doing to look at promoting people using their personalisation money to be able to become more employed rather than continually dependent on services. So how can, for example, if I'm a deaf person, how can I pay my support workers course fees that they become qualified in personal care or something like that so that then we're looking to increase the amount of deaf people working for other deaf people, so then reducing this cultural dependency on whatever organisation it is supplying services. JOHN NAWROCKYI: Thank you. One final comment from the floor before we wind up for the panel. FROM THE FLOOR: I just wanted to go back to a point somebody made earlier about the difficulties for deaf people accessing personalisation and feeling like the bottom of the RUNG in priorities. I think there was a good point made following that which is let's not give up the campaign of the we've got legislation that supports us and that's quite reassuring. My point then is that I think this is going to be an ongoing struggle and I think we need to -- we've got a social workers for deaf people's forum that 106 we've established where we contact each other by email and that's ongoing and we can talk about either personalisation or other issues that might arise in this area. There's also the directors of Social Services who have their own sub group for sensory and physical disabilities and that's a net work as well, so two forums where we can carry on some of these discussions so we can make sure we're on the agenda of personalisation. I just thought I would bring that into the mix as well. Thank you. JOHN NAWROCKYI: Thank you for that. Let's finish with one key point from each of our three panellists. A key finishing point. NEW SPEAKER: John. Just to pick up on the point about employment. We have been working with the Cabinet Office to develop this new system called, "Right to control". It's being rolled out incomes year. That will allow disabled people, deaf people to draw on access to funding, bring that income stream into their total support package which would help to address this issue that you have raised. Right to control. TOM NOON: I suppose the last point that I would make is I think that the thing that I see most commonly with local authorities trying to save money is actually trying to buy the same things for less money rather than actually trying to buy different things. So a reluctance really at the moment to support innovation in the delivery of social care and actually that's the only way that it's going to work, because there isn't any more money to pay for any more services. If anybody gets more money it's because somebody gets less money and therefore we have to try to think about our different ways of delivering different sorts of things, because we can't carry on funding the kind of social care services that we have today. 107 MIKE ADAMSON: And building on that, in order to make a case for why people like John should fund services for the people we support, we need to develop a framework in which we can describe the social return to that investment. RNID with RNIB is undertaking a joint research project over the next two years, and Lindsay Hobson, she is our researcher and she will be with us for the next two years to try to develop a framework for social return on investment for care services for people with sensory investment. So we were very keen to make links to all people who have an interest in that area in order to make sure we draw the best practice and share that research. JOHN NAWROCKYI: Thank you, Mike. Thanks to the panel. Thank you for finishing off the day. (Applause). We're very nearly there. I have been given a list of points by UKCOD, so I am going to have to carry out my instructions here. Just before I do, can I mention that two or three people have expressed an interest in doing a piece of work possibly at national level, possibly with the Department of Health, about interpreting try tear I cannot for services and communication need in the context of the personalisation agenda. If those people want to Google my name, you will find me on the web and send me an email expressing your interest, I'll do something via AD AS and the Department of Health about pulling together that piece of work some time in the next few weeks. In a sense, that piece of work reflects what today's identified for me as a director. Some points from UKCOD, if I may. These presentations and the typing will be on the net in a week's time. So you will be able to access the presentations and the record of the meeting in a week. 108 You have a pink evaluation form which UKCOD will be pleased if you will complete and leave with you before you go. Next conference on 4 March. Advancing technologies. So another opportunity to come together on 4 March to look at advancing technologies. The AGM UKCOD conference on 4th November, broadcasting and telecommunications sponsored by BT at the BT centre in saint Paul's. Thank you all round. Thanks for attending. Thanks to our speakers and panellists, and thanks to Claire the administrator for organising the event. Have a safe journey home. Thank you. (Applause) (The conference concluded) 109