Foundations for self-directed support in Scotland MA-OSEP Foundations for self-directed support in Scotland Foundations for self-directed support in Scotland Page of 452 12th June 2018 Foundations for self-directed support in Scotland About this free course This free course is an adapted extract from the Open University course This version of the content may include video, images and interactive content that may not be optimised for your device You can experience this free course as it was originally designed on OpenLearn, the home of free learning from The Open University – http://www.open.edu/openlearn/health-sportspsychology/foundations-self-directed-supportscotland/content-section-overview There you’ll also be able to track your progress via your activity record, which you can use to demonstrate your learning Copyright © 2018 The Open University Intellectual property Unless otherwise stated, this resource is released under the terms of the Creative Commons Licence v4.0 http://creativecommons.org/licenses/by-ncsa/4.0/deed.en_GB Within that The Open University interprets this licence in the following way: www.open.edu/openlearn/about-openlearn/frequentlyasked-questions-on-openlearn Copyright and rights falling outside the terms of the Creative Commons Licence are retained Page of 452 12th June 2018 Foundations for self-directed support in Scotland or controlled by The Open University Please read the full text before using any of the content We believe the primary barrier to accessing high-quality educational experiences is cost, which is why we aim to publish as much free content as possible under an open licence If it proves difficult to release content under our preferred Creative Commons licence (e.g because we can’t afford or gain the clearances or find suitable alternatives), we will still release the materials for free under a personal end-user licence This is because the learning experience will always be the same high quality offering and that should always be seen as positive – even if at times the licensing is different to Creative Commons When using the content you must attribute us (The Open University) (the OU) and any identified author in accordance with the terms of the Creative Commons Licence The Acknowledgements section is used to list, amongst other things, third party (Proprietary), licensed content which is not subject to Creative Commons licensing Proprietary content must be used (retained) intact and in context to the content at all times The Acknowledgements section is also used to bring to your attention any other Special Restrictions which may apply to the content For example there may be times when the Creative Commons Non-Commercial Sharealike licence does not apply to any of the content even if owned by us (The Open University) In Page of 452 12th June 2018 Foundations for self-directed support in Scotland these instances, unless stated otherwise, the content may be used for personal and non-commercial use We have also identified as Proprietary other material included in the content which is not subject to Creative Commons Licence These are OU logos, trading names and may extend to certain photographic and video images and sound recordings and any other material as may be brought to your attention Unauthorised use of any of the content may constitute a breach of the terms and conditions and/or intellectual property laws We reserve the right to alter, amend or bring to an end any terms and conditions provided here without notice All rights falling outside the terms of the Creative Commons licence are retained or controlled by The Open University Head of Intellectual Property, The Open University 978 47300 052 Page of 452 12th June 2018 Foundations for self-directed support in Scotland Contents • Understanding personalisation and its history • Introduction • Learning outcomes • 1.1 Personalisation and you • 1.2 What's in a name? • 1.3 Understanding personalisation: the patient • 1.4 Understanding personalisation: the client • 1.5 Understanding personalisation: the service user • 1.6 Understanding personalisation: citizens and consumers • 1.7 Understanding personalisation: where next? • 1.8 Personalisation: Children's and adult's rights • 1.9 The landscape of personalisation in Scotland • 1.10 Self-directed support in Scotland • 1.11 What does self-directed support mean in practice? • Page of 452 1.12 Summary of key points from Section 12th June 2018 Foundations for self-directed support in Scotland • • 1.13 Investigative task • 1.14 Looking forward to Section 2 Making personalisation happen: Co-production • Introduction • Learning outcomes • 2.1 Transforming public services • 2.2 Co-production in Scotland • 2.3 Community capacity • 2.4 The importance of networks • 2.5 The benefits of social capital • 2.6 Real wealth • 2.7 Real wealth in Scotland • 2.8 The components of co-production • 2.9 Co-production in practice • 2.10 The challenges of co-production • 2.11 Co-production and self-directed support • Page of 452 • 2.12 Summary of key points from Section • 2.13 Investigative task • 2.14 Looking forward to Section 3 Outcomes-based thinking • Introduction • Learning outcomes • 3.1 What are outcomes? 12th June 2018 Foundations for self-directed support in Scotland • 3.2 Different levels of outcomes • 3.3 From 'professional gift' to citizenship • 3.4 Assessments based on needs or outcomes-based assessments? • 3.5 Outcomes for children and outcomes for adults • 3.6 Outcomes for children • Outcomes in practice • Outcomes and self-directed support • Impact of an outcomes-focused approach for children • 3.7 Outcomes for adults • Outcomes in practice • Self-managing long-term health conditions • Impact of an outcomes-focused approach for adults • 3.8 Needs or outcomes? Children, young people and adults • 3.9 Self-directed support and outcomes • 3.10 The challenges of an outcomes-based approach Page of 452 • 3.11 Summary of key points from Section • 3.12 Investigative task 12th June 2018 Foundations for self-directed support in Scotland • • Personalisation and risk • Introduction • Learning outcomes • 4.1 Is personalisation risky? • 4.2 A short introduction to risk • 4.3 Risk and uncertainty • 4.4 Risk enablement • • Page of 452 3.13 Looking forward to Section • Children: balancing rights and risks • Risks, rights and responsibilities • Making decisions about risk • Personalisation and risk of harm 4.5 Adults: balancing rights and risks • Risk enablement and capacity • Personalisation and risk in practice • 4.6 Is personalisation really for everyone ? • 4.7 Managing risk • 4.8 Summary of key points • 4.9 Investigative task • 4.10 Looking forward to Section 5 Workforce • Introduction • Learning outcomes • 5.1 Demographic changes 12th June 2018 Foundations for self-directed support in Scotland • • 5.2 Challenges for the workforce • 5.3 Self-directed support in Scotland • 5.4 Self-directed support and the workforce • 5.5 Fears and realities • 5.6 New landscape, new learning? • 5.7 Starting from a different place • 5.8 Different roles: personal assistants • 5.9 Different roles: personal assistants • 5.10 Different roles: Brokerage • 5.11 Different roles: Advocacy • 5.12 Regulating the workforce • 5.13 Making personalisation happen • 5.14 Summary of key points • 5.15 Investigative task Working together for personalisation • Introduction • Learning outcomes • 6.1 Your experience of services working together • • Page 10 of 452 6.2 Working together with children • Getting it right for every child • The child at the centre • Changing the culture 6.3 Working together with adults 12th June 2018 Foundations for self-directed support in Scotland it is implemented and how local authorities set their own policies and procedures And there clearly has to be an opportunity taken to look at how they sit comfortably or not alongside each other I think one of the key challenges facing not just our local authority here in Dumfries and Galloway but probably every local authority in the country is that one of the ways that they’ve tended to respond to growing levels of need and either static or reducing levels of resources has been to kind of draw the line higher and higher as to who is eligible And so eligibility criteria tend to become tighter rather than more open And I personally believe that that’s not a sustainable position as we go forward, as need continues to increase quite significantly If we continue to move in the direction that we’re going in, we will be providing services which are paid for by whole communities through the public purse for an ever smaller group of citizens And I just think that that’s not really a sustainable position going forward So somehow I think we have to somehow break that cycle I believe that it’s maybe counter-intuitive or it might seem not the right or sensible thing to do, but I think that we really need to begin to look at opening up eligibility criteria and to free up opportunities for staff within local governments services, including social work, to intervene earlier, and at stages where need hasn’t advanced to the critical stage, because in the medium to long term, I think that’s the only way that we’ll begin to square the circle, because by intervening earlier, we are able to tap into the assets that people continue to have and we’re able to assess the assets that are around them in their family or in their local community and perhaps forestall more requirements on local authority resources going forward Now, that’s a nice philosophy to have But if you’re looking at a position where resources are at the very best probably static – and remember what I was saying about how our council hasn’t reduced spend going forward into next year, but the resources are static – how we make sense of that? And I think it requires us I think to take some courageous decisions as a local authority perhaps about the extent to which some levels of service are provided in order to free up resources to intervene earlier and to things in a way which we know will help us in the medium to long term and get us away from the short-termism which often is what dictates how we our business at the present time day, to day But I don’t think there’s an easy answer to this one The local authorities across Scotland broadly operate broadly similar eligibility and priority frameworks is what they tend to call them But they’re all operating at the most critical level of need, rather than opening up that up And I’m arguing I think that somehow we need to begin to open that up more widely, because otherwise we won’t realise some of the benefits of early intervention which we know we can realise I don’t have an easy answer to how we that But we need to grasp that nettle and deal with it, really Willy Roe And that issue was at the heart of, or one of the hearts of the Christie Commission’s work, wasn’t it, in thinking about how we can go into this period It is very interesting and very important, I think, because I think in none of our lifetimes has our society faced such difficult challenges at a time of reducing public resources and reducing personal resources in terms of funds in the hands of families and individuals Thank you very much Back to Unit Session MediaContent Page 438 of 452 12th June 2018 Foundations for self-directed support in Scotland Challenges for the workforce Transcript Derek Goldman If we’re serious about embedding self-directed support practises, what does the panel think are the changes that need to take place in the workplace, particularly the most significant change in the workplace? Willy Roe John, you’re close to one of the workplaces? John Alexander Well, speaking really, I suppose, from social work point of view, I’m going to go back to some of my earlier remarks, my back to the future comments earlier And I think we need to and reconnect with some of our basic social work values and principles in practise to be supported and led to that We don’t have to go and reinvent a lot of things to make the changes that we need to make But we need to have the courage as a social care workforce to that And that needs strong leadership at every level Willy Roe Thank you Kirstein? Kirstein Rummery I think there would need to be a change in culture that is supported by training and development and support, and that involves a workforce that is supported to take risks And I think that needs to be done within the context of a workforce that isn’t constantly worried about the next level of change and also constantly worried about its own employment and its own role in this So I think there needs to be a little bit of a decoupling from the role that the workforce plays at the moment in rationing access to resources and managing those tensions at the front line towards a cultural shift that is more about supporting people to make choices and put packages in place And I’d echo John’s point that it’s back to basics and reinvigorating the values of, particularly, the social care workforce Willy Roe And Etienne, what would your perspective be on this one? Etienne d’Aboville Very similar to what people have said already, really I suppose the think I would point to is about how performance is managed within those structures And actually, what we need to be measuring and rewarding practitioners for is the extent to which they facilitate the empowerment of the people they’re working with And that’s about how much power they can give away Performance-related pay based on how much power you can give away, how about that? Willy Roe And finally, Allie? Allie Cherry I, again, agree with my colleagues in the panel, certainly around risk enablement And I think for me, the way for that to be achieved if that staff are supported by their line managers and further up the management structure to make those decisions that will Page 439 of 452 12th June 2018 Foundations for self-directed support in Scotland achieve the best outcomes for individuals, and for organisations to trust the professional judgement of the staff that they employ Willy Roe Thank you very much One of our colleagues couldn’t be here today to pose this question, so I’ll it on their behalf And the question essentially asks around you think that the Scottish health and social care workforce is really ready to take on board, the culture of personalisation, the requirements of this new legislation? And we might just look for brief answers, because if the answer is anything other than yes, emphatically, then there’s a lot of work to be done And what is the biggest change, perhaps, that has to be made in that space in order to give the best chance of success? We have bumped into these issues, I think, in the course of the afternoon, but could we hear, perhaps, two voices on workforce issues and the readiness and preparedness of the workforce to respond to this big set of changes Would you like to go first and then John? Kirstein Rummery Can I come in on this relatively briefly? Because my other hat is that I train the future generation of social workers within the university environment And certainly the values embedded in personalisation and self-directed support are the values that they think they’re going to be implementing when they go out and practise So there’s absolutely no problem, I think certainly when we show practitioners and when we teach them, about getting them on board with the theory I think the challenge, really, really is getting that kind of middle management and senior strategic commitment to the implementation and actually supporting the workforce with the training and skills and equipping them with that so that they can go out as confident advocates and supporters and practitioners rather than this being yet another challenge, change, possible threat to their jobs that would be involved in that So I’m quite confident And I believe in the social work and health practitioner workforce in Scotland I think its heart’s in the right place And I think if there was sufficient support and training involved to support practitioners to work with it, then it could work very well Willy Roe John, are you on the same side of the line between positive and pessimistic? John Alexander Well, I think I would be on the positive side, the glass half full part of the argument I think that I agree very much with Kirstein’s cautionary remarks about what needs to be in place to make it happen I would add one, which we touched on earlier, which I think is leadership I think we’ve been very successful in Dunfries and Galloway in recent years in attracting some newly qualified social workers from outwith the area to come and work with us – which is quite a coup because we’re a bit out of the way from where most of the HEI’s are, and our main strategy tends to be about growing our own So we take our own staff, and we help to support them to achieve professional qualifications But we’ve had some what I think of as bright eyed and bushy tailed new social workers appearing from over the horizon, and I think what they need when they come here is the space and the support to implement the learning that they’ve done during their professional training And I have to say, I know that sometimes middle managers are painted as the bad guys in this I think that’s a rather and black and white model I think that many of the Page 440 of 452 12th June 2018 Foundations for self-directed support in Scotland operational and tactical managers in the field are very excited about these new developments because they can see better than people like myself, perhaps, sitting at the strategic centre just some of the pressures and the stresses and the strains of continuing to work with old ways of working With rising need, reducing resources, there must surely be a more inventive and creative way we can things So I don’t see middle managers as an obstacle I see them as much as an asset as an obstacle going forward But leadership is the key thing that needs to be right there Willy Roe : Thank you very much That’s a really powerful way to end this particular question for the moment Back to Unit Session MediaContent Page 441 of 452 12th June 2018 Foundations for self-directed support in Scotland Mr and Mrs McKendrick and Kaleigh Nesbit, personal assistant, Enable Transcript Duncan McKendrick My name is Duncan McKendrick and I live in Kirkcaldy, Fife, in Scotland We have a son Cameron who will be 19 in July Sue Campbell from Enable liaises with Cameron and Cameron’s supporters and his team that he chose help him to get out and socialise Narrator You say he chose his team How did that come about? Duncan McKendrick Enable advertised for supporters for Cameron Then Cameron interviewed all the members and chose which members of the team he wanted Cameron went out with each, I think he went out with two at a time for a meal and a drink and talked to them and they put their case forward I think it was only one person he didn’t choose, don’t know, just did not develop a rapport with that one person It’s very, very important to Cameron that he goes out with somebody who he can relate to because for three years he didn’t speak to anyone but his mum Kayleigh Nesbit My name’s Kayleigh Nesbit and I’m a support worker for Cameron Basically I work with Cameron out in the community and what we is we introduce Cameron to new activities and we work towards outcomes that he wants to achieve, so for example travelling independently on the bus So when we’re out we’ll try and get buses places, trains, rather than using the car so that he can gradually build himself up to being able to that by himself without having to have me there sort of thing, and there’s various things we work on So, for example we work on travel, money, just general day to day things like being able to go to the shop and know what he needs to get and just typical things like that, as well as fun things We’ll go out shopping to Edinburgh or we’ll go to museums, sports, things like that, really just introducing him as much as possible to being able to things by himself and with friends Some weeks we have a list of things we have to do, such as going to the shops to pick up milk and bread, and other weeks it could be that he’s had a really busy week and he’s tired and he just wants to chill out so we’ll go for a walk somewhere When we come home again we have maybe ten, up to half an hour sometimes of just talking to mum and dad, letting them know how Cameron has been, him putting his input as to whether he enjoyed an activity if it’s a new one So sometimes he won’t say to me when we’re out, “I didn’t enjoy that” but the minute he gets home he’ll quite happily say to mum, “I’m not doing that again” and that gives him a chance to get that across as well because he’s not comfortable saying one to one, “I don’t like something”, so it gives him this opportunity to say, “I didn’t actually like that” in a place where he feels comfortable Then we fill in our paperwork, which varies obviously, but with Cameron it’s a sheet of paper where we’ll say what we’ve done, how it went, so for example if anything Page 442 of 452 12th June 2018 Foundations for self-directed support in Scotland happened that didn’t work and then any other comments, so if there happens to be something that’s been bothering him that gives us a chance to put that down so that the next person then can look at that before they go out and say, “Right okay, so this has been bothering him” So they know that they can talk to him about it, or he didn’t very well with his money today so they know that that’s something they maybe need to work on a little bit more Like I say it tends to be once a week I’ll be with him and then obviously repeated the next week Occasionally I’ll be on later on in the week and it’s pretty much the same idea with go through that routine of just seeing how things are, going out for the day, coming back and again seeing how things are after that I think it works quite well but you have to have a good team built around that You have to have a team that understand Cameron and his needs; that get on with the family The worst scenario you could be in is where there’s no communication between the family and the support worker because we are taking Cameron out for the day, they need to know they can trust us, we have to make sure that they can contact us at any point we’re on shift and we can contact them at any point The whole team has contacts for each other and so there’s constant communication, but I think it’s really important that you’ve got that because without it, it would just fall apart and it wouldn’t work, and especially when you’re working on outcomes, if I’m working on something and it doesn’t work there’s no point in Hannah coming in and doing the exact same thing We have quite a small team of about four or five people who work with Cameron on a regular basis, and we are all in constant communication with each other If any of us notice anything that doesn’t seem quite right we’re straight in touch with the family to let them know They’ll let us know any concerns that any of the other support workers had but we’ll also let each other know How does it feel doing this kind of support work? Kayleigh Nesbit I absolutely love it I wouldn’t change it It’s not something that I thought I wanted to when I first started to be honest, but now I wouldn’t change it at all I absolutely love my job What’s so good about it then? Kayleigh Nesbit Seeing people making differences in their life and becoming more able to things, like I’ve worked with Cameron from very early days when he started getting support and the difference in him is great, being able to be there when he does something for the first time and you can see the excitement on his face and being able to say to mum and dad, “Oh, we managed to this today” is the best feeling in the world Back to Unit Session MediaContent Page 443 of 452 12th June 2018 Foundations for self-directed support in Scotland Clare Dooley Transcript Clare Dooley My name is Clare Dooley, I’m from Bathgate in Scotland I’ve got three children with additional needs: my son Michael is the eldest and he is now 17 He was diagnosed at age five, just transitioning from nursery to primary Patrick is nearly 16, he’ll be 16 in August He was deafened with Meningitis as a baby at ten months old Laura is 12, she has Angelman Syndrome Just thinking about how you organise support for your three children, who have very different needs, can you say how that’s done at the moment? Clare Dooley The thing is w e’ve been employing young carers, mostly young carers to try and keep up with the energy requirements for the kids So you were saying ‘we’ve been employing carers’, how does that come about? Clare Dooley The fact is that Social Work said they couldn’t find anybody to fit the bill and then I sort of said ‘well actually you know what, how about if you put somebody in to help me with the housework’ So initially my care started with two hours of domiciliary care a week, and if I wasn’t in and usually I had appointments with Social Work or speech therapists, OTs, physios, so if I couldn’t be in the house for that person coming I couldn’t get that two hours of care They looked about getting domiciliary care workers in, and this was people who had gone into older patients, so they were used to much older people And they had done a six weeks training course on disability, and thought they knew everything when they came in, and it was just… it was a massive learning curve for them, and there was only, to be honest, two staff and they would come in and help me get organised in the morning and then come back in the evening to help… give me some time to get the dinner done It was quite stressful, it was a complete intrusion into our life They were looking through noticeboards and you know I couldn’t have a personal private phone call, my husband and I couldn’t have an argument in peace The thing is I was so desperate for help that I was willing to accept this pair of hands So having a direct payment and being able to organise your support does give you the opportunity to have more choice about a carer? Clare Dooley If the right person applies for the job We have had the wrong people apply for the job, and it came to the point I just said ‘I don’t think things are working’ Unfortunately I mean that’s the precarious employment position that you’re put in, and the fact is that you have to actually manage the staff while they’re in your home It’s a very vulnerable position to have people in your home, the drag is that people know the ins and outs of our life People know where you are and where you’ll be and so it is quite vulnerable at times, especially if things aren’t going as well There’s a fine line between helping you and hindering, and it’s very difficult to have that personal conversation to say to a carer ‘you’ve overstepped the mark here’ Page 444 of 452 12th June 2018 Foundations for self-directed support in Scotland And there’s been a few carers that you’ve tended to go beyond what you would do, you know I’ve ended up feeding them and helping them out, but there’s give and take in all relationships, but sometimes they don’t understand that they’re being paid to provide a service, but the fact is if I’m organising the service, if I’m not happy with it that rests with me Back to Unit Session MediaContent Page 445 of 452 12th June 2018 Foundations for self-directed support in Scotland Uncaptioned interactive content Transcript Simon [subtitled] I’ve got about five conferences in Coventry this month Woman Have you? Simon Unfortunately, yes Woman Have you? You're going to be really busy Simon Yes Narrator Simon Stevens was born with cerebral palsy But he doesn’t let that get in the way of doing the things he wants to He’s a disability awareness trainer and campaigner for disabled people’s rights Today he’s at Coventry University talking about a forthcoming workshop Simon They’re using my picture in the White Paper Flora Lloyd They’re using your picture in the White Paper Woman Fantastic Simon It’s really exciting It's a really interesting time Narrator Wherever he goes, Simon’s accompanied by one of his PAs Today it’s his main PA, Flora Lloyd The role is to facilitate Simon’s life – everything from translating at conferences to support and planning the daily menu Flora You want me to just pop these back in? Simon Yeah Flora And so we’ll just leave the sausage rolls out to defrost? Simon Yeah Flora Put the fish with this, and that for lunch, yeah? I first met Simon about twelve, thirteen years ago when I used to work for an agency so he was one of the people that I used to visit on the agency And we got on extremely well, we gelled Smell this? Smells like tea, doesn’t it? Page 446 of 452 12th June 2018 Foundations for self-directed support in Scotland And then about three and a half years ago he offered me a part time job, which I took, and then that led to me taking a full time position with Simon You’re absolutely right! It’s worked out fabulous Because I was, I’ve always worked in care and the restraints around care work were getting really tight, the policies and procedures were really tight and, you know, you were answerable for everything, you couldn’t what you wanted to because it wasn’t within the care plan, and it wasn’t what was allowed And so working for Simon you’re free to what he wants to so you are enabling somebody to live their life as they wish Simon [subtitled] My staff absolutely anything I need them to do, from nappy changing to translating at meetings, to making the meals, to driving me somewhere, even driving me up the wall sometimes And basically it is what I need doing to meet my outcomes: it is for me, my work and my mental wellbeing And, as someone put it last week only, it's all about meeting my health and being happy: that’s my main outcome Flora Do you want to speak? Simon Yes Narrator Simon runs his life from his ‘den’, packed with computers and other devices Phone conversations can be a problem, so usually it’s Flora who passes on the message Flora Hello Fahim Simon [subtitled] My PAs are employed to be friendly with me, but they are not my friends We can have a wonderful relationship, but at the end of the day I’m their boss And if they don’t what I want, I will – well it won’t work and I’ll eventually ask them to leave Flora There’s times we’re in London or Manchester or Birmingham, where Simon goes to conferences and meetings, and so obviously I assist him to go there There’s other days that we spend all day washing and ironing, and doing the normal things I assist Simon with his banking, his shopping, assist him to whatever he wants really Narrator But a year ago things got more complicated, when Simon began to find walking difficult He had a couple of falls, and ended up in the hospital neurological ward with a diagnosed nerve virus Simon [subtitled] Then I had medication for five days, IV, to get the virus out And at that time, I thought that was it I had my antibiotics; get home, have a nice shower, a good night's sleep, and I would be walking in a week And it wasn’t quite like that And they said it would be months, then they said it would be weeks And then a week later, they discharged me, or they said I could go home I had no idea really how impaired I was so I wasn't thinking about night-care because I'd never had a night-care issue Narrator He was discharged, not realising how serious this had been, and that recovery might be months away One night, after falling out of bed, he realised he had to get night care It took weeks of effort to get any night care at all, and more wrangling to get it supplied by a competent and responsive agency He felt his home becoming a Page 447 of 452 12th June 2018 Foundations for self-directed support in Scotland hospital, his routine dictated by outsiders, zero privacy And little acknowledgement that, until recently, he had been able to walk Simon [subtitled] That’s why I put pictures on the wall, not only for my mental wellbeing so I realised who I was: it was so the carers could understand I was a person and there was a lot more to me, and I was just not someone in bed And as it got longer and longer it became … it wound me down, it made me go crazy, because I had no privacy Narrator After difficulties with three agencies, he eventually got help from a person-centred community rehab team Simon [subtitled] Number one, they asked me what my goals were, and it was about walking, about what I wanted Also it was about, in order to walk again, I needed to learn to walk as someone with CP, not as someone who was normal So they had to let me show them this is normal, this is not normal If they tried to make me walk the way I ‘must’ walk, maybe it would have damaged me, and I would not have ever walked again So they were quite good at letting me control They didn't really any ‘therapy’: all they did was empower me to recover myself I did a lot of the recovery myself Once I knew what I was doing, I used to a bit each day on my own, and it was very good Finally, they were on e-mail, and I think e-mail makes … allows you to deal with it as a colleague And I was able to talk to them about what I needed in a very personcentred way And I found that great, and they were a wonderful team Flora Is it just the doctors we’ve got tomorrow? Narrator Simon’s determination to resist the imposition of residential care and demand a community-based solution eventually paid off What the authorities may have found difficult to deal with was the huge change in Simon’s needs as a service user Simon [subtitled] I got a new label because I got a severe impairment, and no one knew what to Because I knew I wanted a community-based solution I didn't care whether it existed or not, that's what I wanted No one listened to what I was saying No one was asking me what I was saying And if they had listened to me, not agreed with me, but worked with me, say, ‘okay Simon, this is what we can do, this is what we can't do’, I think that is quite important Flora Do you realise this is the first cup of coffee you’ve ever made me? Simon Yes It probably is the first cup I’ve ever made anyone! Flora Anyone? First cup of coffee from Simon Beautiful Simon Now, be honest! Flora What I find as the challenges as a PA is you’re not recognised within the care profession if you’re a PA, there’s no mandatory training You have a lot more responsibility, you don’t have anybody else saying what you can and can’t What your boss asks you to is, is what you have to do, so there’s so much more responsibility with so much less protection Working purely for Simon, if anything Page 448 of 452 12th June 2018 Foundations for self-directed support in Scotland happens to Simon my job’s gone, so there’s no security either So it’s an extremely intense relationship that we have, you know and I’m sure it’s challenging for him, I’m sure it’s not just for me, I’m sure at times that, you know, it’s challenging for him, and I think it’s all about attitude, all about allowing Simon to be himself, express himself and be what he wants to be Simon [subtitled] Flora respects me and she respects her job And she respects it’s my choice whatever I want She's got a very open mind, and so we get on very well Back to Unit Session MediaContent Page 449 of 452 12th June 2018 Foundations for self-directed support in Scotland Uncaptioned interactive content Transcript Willy Roe My name’s Wily Roe, role and I’ve been asked by the Open University Scotland if I would be the chair of the session today I’m delighted to that, and just a few words of introduction at the beginning before I ask the panel members to tell us who they are and what they For some of us, self-directed support might be something completely new, maybe even daunting Maybe interesting and challenging, and positive But for everyone, self-directed support isn’t new, because in fact, the roots of this movement can be traced right back to the activism or disabled people in Hampshire in England in the late 1970s, when direct payments were first introduced as one of a range of solutions to tackle a lack of choice and control that disabled people felt at that time So for some people this, is a generation’s worth of work they’ve already been doing But for others of us, it probably is something quite new And this edition of question time is designed to help us learn about what is happening, what the pluses and minuses of it might be, and where over the coming years self-directed support might take us in Scotland So could I ask the panel each to introduce themselves, and just tell us in their own words what personalisation, I suppose, is for them And how they feel that this new legislation, the Social Care Self-directed Support Act of 2013 could take forward the idea of personalisation So tell us a bit about yourself in a few moments, and we’ll go to Allie first Allie Cherry Good afternoon, folks My name’s Allie Cherry I manage NHS Lothian Self-Direct Support Test Site I have to make a disclaimer at this point, I’m not a clinician, and I’m a community education worker So coming at it from a slightly different approach In terms of what personalisation is for me, it’s very much about ensuring that the outcomes for the individual at the centre of any discussion and decision making process, and as far as the impact that the act will have on peoples’ care I think for me it’s very much about ensuring that the individual has the information that they need to make an informed choice, and it places the onus on professionals to make sure that that information is accessible to the individual to enable them to make that choice Thank you Willy Roe Thanks, Allie Etienne, would you like to introduce yourself? Etienne d’Aboville Hello My name’s Etienne d’Aboville, and I’m chief executive of Glasgow Centre for Inclusive Living And we’re a centre for inclusive living, a CIL run by disabled people We provide a variety of services to disabled people in and around Glasgow, including housing, employment, and probably core to the organisation, providing support to between 400 and 500 people using various forms of self-directed support in Glasgow, and also in east Dunbartonshire Page 450 of 452 12th June 2018 Foundations for self-directed support in Scotland I think it’s very, very pleasing just to hear Willy refer to the origins of direct payments and self-directed support, because I was probably one of those people in the ’80s who was involved in that campaign to bring in the legislation So my perspective on personalisation is with the backdrop of direct payments being a key part of the campaign, of the independent living movement So I see it very much in the context of one of a range of issues that disabled people need to have resolved to enable them to participate in independent living So housing, transport, education, employment A keystone of that is the day to day support that people need And so for me, it has a kind of collective dimension relating to the kind of empowerment to disabled people, the choice, dignity, and control, ultimately leading to citizenship Which is effectively what it’s about for people at the end of the day, for me Thank you Willy Roe Kirstein? Kirstein Rummery I’m Kirstein Rummery, I’m a professor of social policy at the University of Sterling And I’ve been involved in research into personalisation, looking at it internationally and in the UK, and more recently within the Scottish context for not quite as long as Etienne’s been involved in campaigning on it, but it feels that way And personalisation for me is really about devising systems that provide support for citizens that need that But in ways that are quite creative, and ways to put them at the heart of controlling that support And I think I’m a slight fan of the latest kind of legislation, which is the SDS bill that went through this year, because it is quite evidence based It does build on a history of good experiences, both within the UK and within Scotland And as an academic researcher, I’m a big fan of evidence based policy And I think it does provide a useful framework for being able to provide better services and support for people that breaks us out of silos that we might have got entrenched into earlier Willy Roe Thank you And finally, John John Alexander I’m John Alexander I’m the director of social work with Dumfries and Galloway Council I’ve been here in that role for the last five years, during which I’m pleased to say I was able to oversee the involvement of Dumfries and Galloway in the Scottish government test sites for self-directed support I’m a professionally qualified social worker by training I’ve worked in local government for 35 years in a number of authorities, and for probably the majority of my career, my interest has been in services for adults and community care services For me, personalisation I think is a description of a way in which individual citizens are given the opportunity to take control, and to exercise choice about the kind of life that they lead And allowed to achieve everything that they wish to achieve in their lives with the support of others In that sense, I think of personalisation as rather broader as a concept, and self-directed support But I agree with other speakers I think that the present bill, soon to be enacted and implemented, allows those opportunities for individuals to exercise choice and control in relation to a very important aspect of their life, which is the kind of support and care that they need to, Page 451 of 452 12th June 2018 Foundations for self-directed support in Scotland if you like, get them to the starting line to participate in local communities and lead fulfilling lives Willy Roe Thank you very much Well, thank you all Back to Unit Session MediaContent Page 452 of 452 12th June 2018 .. .Foundations for self-directed support in Scotland MA-OSEP Foundations for self-directed support in Scotland Foundations for self-directed support in Scotland Page of 452 12th June 2018 Foundations. .. self-directed support in Scotland Understanding personalisation and its history Page 12 of 452 12th June 2018 Foundations for self-directed support in Scotland The Social Care (Self-directed Support) (Scotland) ... continue to work through this course Page 48 of 452 12th June 2018 Foundations for self-directed support in Scotland 1.10 Self-directed support in Scotland Figure 1.18 Directing your own support