Category: Self-directed support
What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.
MD - Michelle Drumm
NB - Nikki Bruce
AC - Anne Connor
JM - Judith Midgley
YW - Yvonne Stewart
CM - Colin Millar
CS - Caroline Sturgeon
JF - June Findlater
MD The first in a series of planned Iriss discussions took place on 20th June 2013 on the topic self-directed support. We had seven people from various organisations involved including Nikki Bruce, Head of Personalisation at Enable Scotland, Anne Connor, Chief Executive at Outside the Box, Judith Midgley, Iriss Associate on the Pilotlight project, Yvonne Stewart, SDS Project Manager at Alzheimer Scotland, Colin Millar, Chief Executive at Scottish Personal Assistant Employers’ Network (SPAEN), Caroline Sturgeon, Workforce Development Advisor at SSSC and finally June Findlater, Fieldwork Manager, Adult and Older People Services at South Lanarkshire Council.
The discussion was on the question ‘SDS is just the same as an outcomes focused approach’. Overall there was quite a lot of agreement on this, but lots of interesting points were made. It kicked off with each person offering their viewpoint on the question. Nikki Bruce gets the discussion going.
NB My position on that statement would be a definite disagreement, and the way I try to make sense of the different words that fly around in this whole arena and the way I have tried to help other people make sense of it, because that is part of my job, is I see the … and this is probably old hat really, but I see the term ‘personalisation’ as the sort of global, bigger picture concept that is the destination of where we … or a destination of where we are journeying towards, and I see self-directed support as a vehicle for getting us there, and I think of outcome based approached, outcome focused planning as a way of fuelling the vehicle … one of the ways of fuelling the vehicle, along with co-productive approaches, person-centred thinking tools, etc. There is a whole range of things that kind of sit underneath this vehicle which is self-directed support, which is getting us towards a bigger destination which is personalisation which is actually not the final point destination in my head either - I see personalisation as a way of getting towards … this might sound a bit Utopian and idealistic, but a society where everyone is genuinely treated equally and valued equally, and there is nobody left out or excluded - and we are obviously a long way off that. But to get to that place involves more than self-directed support - there is a whole public education and generational shift in public attitudes that needs to happen too.
CM Certainly I would agree a lot with what Nikki has said in terms of the kind of ultimate destination - we are talking now about inter-dependence and recognising that everybody in society is linked in some way, shape or form - and whether that be through people with disabilities requiring additional supports or whether you are any other citizen in society - you are inter-dependent on the others in there. For us, self-directed support is definitely not the same as an outcome focused approach - outcome focused approach being part of self-directed support, but for us the kind of ethos behind self-directed support is very much about achieving that inter-dependence through things like outcome focused planning, through person-centred planning, etc, but these are all just means to achieving that inter-dependence and keeping the inter-dependence at the very heart of that. I guess the other problem we have found with self-directed support is people then try and label it - so it becomes an outcome focused approach or it becomes all about a direct payment or something or independent living, and we are trying to kind of steer away from that and say this is not to be pigeon holed in one of those areas that is already in existence - it is about taking it way beyond that and recognising that self-directed support gives us a whole new opportunity to achieve a whole lot more than we have in the past. So again we would be very wary about putting self-directed support as one thing beyond perhaps inter-dependence.
JM Well although I agree with what the previous 2 speakers have said, I do think that an outcomes focused approach is very much at the heart of self-directed support, but it is only part of it. And for me I think it’s about how those outcomes are arrived at, and if they are arrived at by involving people in the design of their care and support, which we would call co-design, and then enabling them to exercise appropriate control over how it is delivered, co-production, then I think that’s been what’s at the heart of self-directed support, or supposedly, in order to achieve those outcomes. So I think it’s how you get to the outcomes that is very important, because ultimately that will then determine whether those outcomes then achieve.
AC No, the short answer is no, self-directed support is not just the same as an outcomes focused approach, and yes I agree absolutely with what other people have said about how the focus on outcomes is so important and just makes such a difference for a lot of the people I know, in that it’s the outcome that matters to them and we are now actually talking about that, and personalisation - thinking of that as a way of services being delivered that is organised around the person. But I think we have to remember part of the reason we are here is because the current systems haven’t worked and I mean yesterday I was talking to people where they are with … in as nice a way I think as people can, they are being asked to organise their lives to fit round services, and they have no choice because there is nowhere else for them to go. And once they begin to have the options, particularly if we are thinking of the way we are developing self-directed support here, and the option to (… unclear) parts of it, they suddenly will have a choice, because they will have the right to say “I am not happy with it - and either you begin to get the service to work round me, or I am going somewhere else”. I think the other reason is remembering that for some people, social care services can and do deliver, and deliver well, what it is that they need to have the things that they want in their lives, their outcomes. But for other people it can’t - and what would really make a difference is more of the ordinary things, and using them … again getting away from the bit about you have to stay in to get your support worker to help you be included - and you have now cancelled meeting your pals because you have to be there because that is when the support worker comes. But it is that bit about being part of the society, meeting your pals, doing things together. And again self-directed support gives us a mechanism to be able to let all those bits join up. We are no longer asking people to have an either/or - we are saying we can organise the world, we can organise the way the payments happen, the way services are planned, the way other activities are planned, the way in which you have choice and control fit for you, and it is now becoming right - and you are less dependent on the way in which the services in your patch happen to be organised. And I think that rights element is something we do have to remember. We have to remember the bits in the current system that are working incredibly well, and I know people who have been doing self-directed support for years, it is just they didn’t know that was what they were doing, and it is making a huge difference to people, it’s working great. But we need to remember there are so many where it is not working and it’s thinking “how do we get a system that gets all of the good bits and makes that available for everyone”?
CS I think I would agree with a lot of what has been said already. I think, for me, self-directed support really is, in a way, a kind of a means to an end, and the ends is really the outcome, what really matters to the individual. And so while self-directed support and the outcomes focused approach share a lot of things in common, I don’t think they are one and the same. I think that what is important in both is that relationship building and shifting from, I suppose, from the kind of traditional assessment model to that more outcomes focused conversation and really valuing that relationship and valuing the time and the co-production, and finding out what matters and building links within the community as well. So I think an outcomes focused approach can be part of self-directed support, but I don’t think it’s the whole picture.
YS I would agree. In relation to how people with dementia see self-directed support is quite different. They quite often get sort of self-management and self-directed support confused. And I had a conversation yesterday with a couple of members of the Scottish Dementia Working Group, one of whom has just recently asked for self-directed support to enable them to continue to engage within that group - and their outcomes were a bit different from maybe the traditional delivery of care for someone with dementia - they weren’t asking for assistance with personal care per say, it was more assistance to enable them to do the things that they enjoy doing, which is campaigning for the rights of people with dementia, and that just seemed to be beyond what people could comprehend was a traditional model of support for people with dementia, and actually they were informed “well maybe it is time that you gave up those kinds of things in your life”, rather than self-directed support being that outcome focused approach to actually living a meaningful and purposeful life, which is core to who they are as a person, for as long as possible. So I think self-directed support has a long way to go to meet the aspirations of people with dementia.
JF If we go back, sort of rewinding and looking at the kind of principles of what would become self-directed support, but looking at it in context of a recession and the demographic challenges, particularly with older people, people with dementia and others, but just general changes in society. And looking at especially talking points supporting the outcomes approach and seeing that as the conversation - the importance of conversation and relationship building, but establishing in a different way how we can solve problems, identify and agree what the problem is, and then find a solution, and recognising that using, if you like, the softer personal outcomes approach helped identify the solution or the problem that mattered most to the person and what they would engage most in trying to solve in a co-productive, whatever way we want to describe it. But then looking at the solutions - and the solutions weren’t always services, and that was a recognition that in the current climate, which is going to continue, that options around services won’t always be the same, and that if we focus on problem solving, solution orientated practice, in partnership with the individual, then we are more likely to come out with some kind of plan that works better for the person that they are more committed to working with. Then looking at where self-directed support … and the danger that, I suppose we perceived, I’m talking about 2 or 3 years ago, was that it would take staff assessing staff, not so much (… unclear) assessing staff back into a service driven culture. And I think that is a danger, and that is probably why they are part of a pathway but they are not the same, because how … whatever shape the support required to reach that solution then is where self-directed support is shaping that, making sure that that aspect of the support plan, whatever that was, worked. What do we mean by supports and services? If we were trying to move away from a service driven, service led assessment process, then how might we change the language in that. I suppose with self-directed support there is, not danger, but it’s being very acutely aware, I suppose, that we all need to be aware that the two need to go hand in hand, that the conversation, the kind of conversation that isn’t about “you can get a budget at the end of this”, or “you can drive the support”, because it is leading everyone down a path that support is necessary, but it won’t always be, there will be other more creative solutions. So I think it is going to have to be balancing both - but self-directed support needs to have these principles of choice in terms of problem solving, not just budgets or (… unclear)
AC Can I pick up on that, what Yvonne said, because I think part of the underlying bit is the aspirations that we expect for a lot of people, definitely people with dementia - but just thinking of a lot of the people I know, which comes a wide range of people in different client groups, to use that old phrase, but people with different situations and different circumstances in their lives - where I think often it has been hugely difficult for them, having lived with the low aspirations and the low expectations other people of them, or finding that they were doing great in their lives and now they are not, and suddenly you are being told “stop the life you had and become someone who gets support”. And the way in which we are having to encourage people to … enable people to think of themselves differently. And I think certainly that point about the language, the questions, I think turning up and saying to somebody “tell me what outcomes you want”, when nobody has ever allowed you to even think of an outcome up until now”, because you are someone who uses the service. I met someone last week who described themselves as a “service avoider” - and I think there are some wonderful service avoiders out there who have got incredibly good lives and who have come up with really imaginative solutions that we can learn a lot from. I think though I would disagree with that point about the risk (… unclear) what is going to take us back into a services world. I think to many they are already in that world - and actually the people I know who are talking about the way in which they are seeing individual budgets, or kind of mix and match options are - they are coming up with innovative, practical solutions that are often making more creative use of available resources, and are definitely making much more use of theirs and their friends, who are often other people with disabilities and illnesses, the skills and experience and capacity that I have … few Care Managers have ever dreamt of - and I think it is just thinking actually - it is not going to open many, many more doors, but the starting point is how people’s aspirations and expectations are and how we raise those aspirations and expectations for what people are able to do and what they could achieve with a little bit of practical support. And somewhere in the system it’s making sure that a lot of the people we know, in different types of groups, different types of individuals, are able to go on challenging that - and we have to make sure we are challenging ourselves and not coming back with the sort of safest, least risky, most careful option, but thinking how do people live their lives in a creative, meaningful, purposeful way where they are taking, not just control of their own lives, but they are contributing … taking control of the services they use - they are running and leading the services they use.
NB I am really so glad that we have arrived at this place so early in the conversation, because one of the kind of lingering fears I have is in a climate where there is not a lot of money around to do a lot of staff development is that thing about relationships - and two or three folk have mentioned the importance of relationships and the real critical need for staff to know how to be reflective and to know how to think about the way they use their own power and the way they can abuse their own power without even realising they are doing it - and also have limited expectations. You were talking there about people needing to be, you know, having great ambitions for themselves, but staff can also be the ones that limit that, that pull it down, again without necessarily being aware of it. So I am hoping in all of this change that is happening there is still going to be room for us working very closely with the people on the front line who have these relationships, to make sure the relationships are the way they should be.
MD The discussion moves on to discuss how current culture, such as shifts in power and language, for example, impact on the implementation of self-directed support and whether SDS supports system changes and what could be put in place.
JF We are implementing some of this work and I can do a comparison to where I am now in South Lanarkshire where there was a day and a half session where staff were taken through the difference between outcomes, outputs … and I know they are still reeling from that - and I think maybe the organisation has acknowledged that. The approach that was taken in the previous organisation was much more kind of hand holding, working one to one with staff, we used some money that we got to take on a Development Officer who worked … he looked at case studies - because it is case studies and examples that people learn from, and took quite a different approach, but it was still a long journey. And you are back to your question about self-directed support - it probably is, it’s probably kind of like your point that we keep having new legislation, we still don’t get it right, (… unclear) all sorts of legislation, but we have still not really … we have kind of missed the point in a sense. So this is an opportunity to really grab it - but it still needs some of the background work done to kind of take staff on. I think that confusion around outcomes - that’s why personal outcomes is better, or even the conversation, focusing on the conversation that we are having can impact at a more natural level for staff. It is much easier then to understand where self-directed support and a shift in control - because I think there is still … big conversations need to be had at a front line and operational level around what it means to shift power, because I think we have avoided that organisationally. And I’ll give an example - within my own organisation, without being too specific, but where staff are encouraged to think or use the creativity of service users - that is challenged because of the budgets. So there is this instinctive, long, you know, I suppose ‘habit’ that has developed that we have got to kind of keep - and some of that inherent gatekeeping and the habits that lead to gatekeeping have to go in order to make this work. And I don’t know where that sits - I suppose that is where the legislative opportunities sit, to drive that. But that whole system to enable organisations at every level to hear, for example, that it’s okay for someone to use their direct payment or whatever we call it under self-directed support, to use that money to have a different kind of respite experience and not to be scared of a holiday … we don’t pay for holidays … it’s that kind of … So, you know, organisations, some anyway, will become quite schizophrenic over saying one thing, behave differently, but we can’t actually change ourselves because we have got all these systems and processes in place to manage and account for budgets - and I think that is a big, big challenge for organisations. I think it gives clout, certainly for organisational language to change, but it’s at every level - there is a big responsibility for staff and members of the public - but it’s that whole system and process that is needed, to promote what is needed and to make it work.
CS I totally agree with that - I think where we are asking frontline staff to kind of change the types of conversations they are having, I think it’s a big challenge as well for organisations to change the focus of the conversations that they are having at every level and change the way that they are modelling that behaviour - whether it’s in staff support or C provision, so it is outcomes focused across the whole board and really investing in that shift in power balance, enabling frontline staff to have the autonomy that they need to be able to take those creative approaches - because if the system doesn’t reflect that empowerment at all levels, and if the workforce isn’t empowered, then it is much more difficult for then workers to support people using services to be empowered, to take more control over their own support I think.
CM There is a huge leadership challenge in there as well - and that is one of the problems. I remember reading Sir Terry Leahy talking about his time at Tesco, and he was saying that everybody in the organisation was a leader. And I guess part of the problem with a lot of statutory bodies … I have worked in local authorities and Police and places like that - is that they inherently go back to this command and control type leadership. So where you go to Tesco and he says “right, okay, folk stacking the shelves, they can influence how you deliver the service” - you go into a local authority and you say to the frontline staff “you can determine how somebody achieves their outcomes”, only for somebody else to say “no, no, that’s beyond your remit - this is how we do it here”. So in actual fact we need to change the culture at the very top, get them to understand that there is going to be a shift - but that will be very, very tricky. And I guess even looking at the guidance and regulations that are coming out to support the Act - there are some bits in the SDS Act that we have been really encouraged by, and then we have looked at the guidance and regulations and it has been watered down and further diluted, and already we are starting to kind of backtrack. And I think the Scottish government have got a huge role to play in that - to say “no, we are going to stand by what we said at the start. It was right when we put the bill through Parliament. It is still right. Let’s not water it down. Let’s not dilute it, and let’s actually go out there, do the difficult stuff now, and in 10 years we will all reap the benefit”.
AC And I think the other culture change we are looking at, relationship change, is the difference between local authorities and providers, because there has been this view of “there’s the local authorities and that’s where the assessment and budget bit happens - and those are the providers and they do their bit - and those are perhaps independent user-led groups”. But I know on the ground it much more complex than that. Again, I had a conversation yesterday when someone said “but I have been telling this to my Support Worker, so why has nothing changed?” Well, because that is a provider - they have raised it and it has been assumed that is the provider simply arguing for more and different resources. Actually they are not, because that is not what the personal is asking for - but the formal system in this place are getting in the way, because there is this absolute divide in the mind set between “that’s where the assessment happens” and “that’s where the providers are”. If I am somebody, I trust the person I trust - and if that something happens to be labelled as a provider and you are waiting 6 months to see your Care Manager anyway, why wouldn’t I tell the person I trust and talk over with them and come up with a solution? So we are going to have to think differently about the way we have got to run those relationships, and the tricky bit there is still maintaining the safeguards and understanding that there are differences in the roles and there are good practices associated with each of them. And it makes us think rather “what is someone doing and why are they doing it, and what is it that is good?” Rather than simply “what’s their label and who they are employed by” - and that is a whole challenge to it as well. And again I think it is that leadership being across all parts of the organisations and range of people who are involved in this. When we have had a culture for so long that everything was based on competition - providers competed for tenders and local authorities competed for resources and other people competed for the right to get … I mean we ever put our (… unclear) out tender. We have created this competition, keep your cards very close to your chest kind of culture and approach - and yet for real people, having their lives, it has got in the way. So I think that leadership is running in many parts of the system and in many places - and the irony is the pressure on finances may give us the incentive that we have to work differently because we know that the other push of it is the current system is not possible with what we have got available and what we’d like to do with it - we have to come up with a different solution. So maybe we are going to end up doing the right thing for not a good reason - but if it ends up being some right things, including a difference around the leadership side of it, that would be good.
YS I wonder how much self-directed support and an outcome focused approach can change the crisis led service delivery system. But I wonder if you costed out some of those packages, and I’m thinking, putting a dementia focus on this, but we know as someone with dementia’s illness progresses that their circle of support generally disintegrates until it gets to the point where there are maybe one or two people who become, you know, 24/7 carers within that person’s life to enable them to remain at home. And generally services don’t kick in until those carers are at the end of their caring role and until some sort of crisis happens, the person ends up in hospital, the carer ends up in hospital - and then all of a sudden we are into thousands and thousands of pounds worth of cost of keeping the person in hospital or putting services in place to get the person out of hospital, and we have generally got a very unhealthy set-up all round. And if we keep those systems and processes in place, you know, it doesn’t lead to particularly good outcomes for anybody - the costs are huge - but unless self-directed support changes that system delivery, and that we recognise that if we develop and work with people’s assets at a much earlier stage in those types of progressive illnesses, then we are going to keep that person safer, at home, for longer, with better outcomes for everybody all round. But the other thing within that is we also … we don’t see the whole picture. You know, we take people as … the psychiatrist looks at somebody’s head issues and the osteopath looks at bone issues and somebody else looks at other issues, and I think we do that in social care as well - and we have systems set up to support carers which don’t necessarily fit very well with systems that are set up to support the individual - and ultimately, that is within the family unit. And unless we can bring all those resources together to support better outcomes for that whole family unit, then we are missing a trick.
JM Picking up that point about preventative services and early intervention, I mean I think self-directed support lends itself really well, and within the outcome focused approach to doing that - but currently we have got eligibility criteria, and in most local authorities, quite high eligibility criteria to even access self-directed support, and I think that is a huge challenge - for local authorities, how do they release money in order to invest in some of this preventative approach.
MD That is ultimately going to save money?
JM Yes, but we seem to be stuck with these eligibility criteria, and people that might well benefit at an earlier stage not being able to access it.
AC And certainly a lot of the smaller user groups that I know are doing quite a lot of good preventative work on very small financial arrangements where they have grants, contracts - and they are certainly very worried that everything is going to stop and it is only going to be people with individual packages. And it is interesting to take some experiences in placed in England where they kept those sort of low cost/high volume preventative community type things like allotments and all sorts of other stuff that people are doing that just keep that quality of life - “my pals are looking after me and I’m looking after my pals”, and neighbours and some old people have got a support around them, but nobody knows who’s who, and it just works. And I think the risk is that we get so caught up in everything has to be with the individual as packages - and we forget about that level of community stuff. I think it is also remembering that it’s the resources across the whole local authority and not just what’s in the social work budget - and if some of that is happening through Community Learning & Development or Economic Development or something else, Parks & Leisure, Libraries, whatever they call them - I think it’s remembering those resources are there, and are being used, and can still be used in a positive way. Hopefully that will reassure people, but it will also ensure that we are not losing those wider community, wider society links that are going to be hugely important to keeping people well - and that building capacity in the mainstream element, which is mentioned in the guidance, and we need to really keep and build on. It is going to be important - I mean this is as much a community planning and sustainable health of communities policy as a social care policy.
MD On managing risk in self-directed support, here’s a few sound bites from the discussion.
JM I think if we don’t find ways of supporting those frontline social workers to take this outcomes based approach and to deal with the risks involved, then this could all not achieve what we hope it could achieve.
CM The question of risk takes me right back full circle to that interdependence though - and I completely appreciate that all the statutory problems sit with the social workers. And we had an example where somebody wrote a contract for one P.A. for 120 hours. Now ultimately it would be the local authority that would pick up the cost of that if it went to court, and the employer would obviously be kind of liable as well - but when you look at that interdependence circle, you are going “how many people round that table knew that was going on?” And every one of them abdicated their responsibility - and we were talking about the community coming together and saying “okay, if we share that risk, if we all sign up” - and actually that is back to that interdependence. Every one of us agrees this person is going to live a full and meaningful life as an independent citizen, and here’s my wee part to play in that - and if I’ve got concerns, I’ll take it to the local authority, to the social worker or the social worker can come and talk to me, or they can go and talk to somebody else. And if we all just talk to each other - what a crazy concept!! But actually sharing the risk and saying “well it’s not any one individual’s risk, it’s a risk that is shared between the lot of us”.
YS I think it goes further than that. I think it’s a risk that is shared by our whole society, and I think we need to start talking about it in that way because I think we are all equally valued citizens of that society - unless we almost exclude 90% of the population when we talk in terms of health and social work and vulnerable people. And, you know, we are all people, we are all Jock Tamson’s bairns, and it’s much more about how we share that risk with everybody. Because within some services the issue of control - and we feel the need that we have to control everything, and nobody can control everything.
MD The discussion ends on a positive note - a couple of participants give their views on the future for self-directed support in Scotland.
AC I think just a comment that the user-led groups I am involved in, that this is something that is hugely positive and exciting and a great opportunity - and I think they are concerned that a lot of people were getting worried about all the hard bits and the risks - they just wanted us all to be a bit more cheerful. So can you optimistically and cheerfully look forward to what you can contribute to making self-directed support happen in a way that is good for everybody.
YS And I just think it is going to be transformational for people with dementia. When I started with Alzheimer Scotland in 2009 there was approximately 82,000 people in Scotland living with dementia, and at that point 97 people with dementia were in the receipt of a direct payment. So there is a problem. And we have seen that grow by some 300-400% over the last 3 or 4 years, but it is still a very small number. But for those folk who now have it, they have said that it has been transformational in their lives and has enabled them to be husband and wife again, it has enabled families to stay together, it has enabled people to do things that they never thought would ever be possible again, and they cannot express … and I think one family said … they made a DVD recently and they said it has been like a thousand fold improvement in his mum’s quality of life - and I just think that is what it’s all about, when we get it right. And despite all the hurdles and barriers and everything else that is going to come along, if we get it right, that is what we are aiming for - that transformation and life-changing opportunity.
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