Transcript: Self-directed support: a radical policy?

Podcast Episode: Self-directed support: a radical policy?

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.

SM - Stuart Muirhead
CP - Charlotte Pearson
NW - Nick Watson

You’re listening to Iriss.fm, Scotland’s social services podcast. On the 21st of February 2019 Dr Charlotte Pearson and Professor Nick Watson spoke to Stuart Muirhead from Iriss about their research on Self-Directed Support in Scotland and whether it’s brought about the transformational change it set out to achieve.

SM Hello and welcome to our latest Iriss fm episode. My name is Stuart Muirhead. I am a Project Manager here at Iriss and today I’m with Dr Charlotte Pearson and Professor Nick Watson. We’ve invited them in to talk about their research on Self-Directed Support in Scotland. Nick is the Chair of Disability Studies at the University of Glasgow and a member of the research staff at the Strathclyde Centre for Disability Research. We’ve known Nick through his involvement as a Lead Director in the What Works Scotland programme, and he’s also helped us chair a recent cross-sector event on the implementation and use of high quality evidence. Charlotte’s a Senior Lecturer at the University of Glasgow who’s researched and published widely across the themes of personalisation in social care and how this operates within the landscape of health and social care integration. We were lucky way back in 2012 to have Charlotte and others write our insight number 18 titled “Self-Directed Support: Preparing for Delivery.” Now it’s 6 years later and we were keen to learn from Charlotte and Nick about some of their most recent research asking about whether personalisation in SDS has brought about transformational change since it was implemented. I’ll hand over to them, let them do a better introduction of the work. Charlotte and Nick, thank you for coming along and over to you.

CP Okay, thanks very much Stuart. Yeah, I mean as you said we’ve both been involved in this area for a number of years. I started researching the predecessor to Self-Directed Support - direct payments - way back in the late 90’s and we’ve really kind of watched it change and grow as a policy really to a position now where we are. Personalisation is very much imbedded within the social care agenda and across a lot of other policy areas. We see it now in health, in education and employment. It’s certainly a dominant theme across social policy. What Nick and I are going to talk about today is really questioning whether Self-Directed Support in Scotland is the transformative and radical policy that it was set out to be in the legislation, and I think it’s really important to start off with when we’re looking at that question is to look at the background to personalisation, and certainly it comes from a radical tradition in that the Disabled People’s Movement very much grew the idea and it came from the work and experiences of disabled people initially way back in the 1970’s with students on the campus of the University of Berkley simply saying to the university authority, “We don’t like the support we’ve got. We want the cash alternative to arrange our own support”, so it coming from really a very simple idea but needing allies and partners all the way through to make it into the social policy mainstream as it is today. So to kind of whizz through a potted history of that time, from the experiences of the students in America these gradually came through to the UK obviously in a pre-social media age. We saw experiences in different parts of the UK where disabled people were turning to their local authority and saying, “We don’t like the support. We want the cash alternative. We want to be in control of organising that ourselves.” And certainly this only happened in a small number of areas but they were really important alliances and something of an unlikely marriage between what was often an inactive Disabled People’s Movement or very small groups of activists and a local authority that was either understanding of those needs and perhaps had a disabled person themselves in a key planning role, or ideologically those from what tend to be conservative authorities like the ideas of doing something a bit different with local services. So back at that time we had areas like Derbyshire, Hampshire in England, and in Scotland Edinburgh was kind of the leading light on this in going forward. Then kind of fast forward through the 80’s and 90’s where the Disabled People’s Movement pushed and pushed to try and get some statute. I think there was something like 14 attempts. The conservative government were very resistant at the time for a number of reasons seeing as you know a potential for abuse were very uncomfortable with freedoms of disabled people in controlling their own support. So a long, long battle to get some statute and then we’re looking sort of mid 1990’s where the British Council of Disabled People used an evidence base to try and change policy, and the piece of work by Zarb and Nadash in 1994 actually looked at kind of existing personal assistance schemes, so the experiences of the Independent Living Fund, and found that the scheme could be up to 40% cheaper. Now I don’t think that figure has been in any way ever realised but it was a really powerful tool to challenge the conservative government and get them on-board. So right at the tail end of John Major’s government we saw legislation for direct payments come on the statute and the precursor to personalisation. Suddenly from the early 2000’s no one was talking about direct payments as much and they were talking about a kind of wider umbrella term of personalisation, so we start to think about co-production, more involvement from the users, and you know suddenly everyone’s on-board, all the main political parties are talking about personalisation. We have writers like Charles Leadbeater talking about ideas about making services responsive to individual needs, and as I said all of the political parties are on-board with this, and suddenly it has something of an ideological grip. Karen West in her work talked about this in terms of the ideological grip it had across kind of mainstream political thinking, but from the early 2000’s we see policy start to change and certainly in Scotland the kind of initial resistance to direct payments changed to kind of a broader interest in personalisation as a policy, and Nick will talk about this in a bit more detail shortly but there are concerns that really what does personalisation mean, and this has been a danger throughout the policy. Is it what West has called an empty signifier? A danger that personalisation is just rhetoric and all the kind of talk about user choice control and autonomy actually doesn’t amount to an awful lot. So with that in mind I’ll pass over to Nick to update on the position in Scotland.

NW So I mean the most important piece that’s driven Self-Directed Support is the 2014 Social Care Self-Directed Support Act. There is a really significant shift in Scotland in the way it went through and I think actually it was a scale of change that was unprecedented anywhere in the world I think, because it really implemented and rolled out because in Scotland we had been traditionally pretty reluctant to take on direct payments. Although Edinburgh was at the forefront you would never say that the Centres for Independent Living or Integrated Living would never have been saying they were pushing at an open door when they were trying to drive through direct payments. In the early days it was despite social work rather than because of social work as they started to try and roll it out, and suddenly in 2014 we had this attempt at transformative change and the Scottish Government employed then its own version of personalisation which is the Self-Directed Support, and this was about introducing Self-Directed Support into the mainstream of social care. They offered 4 options. They offered what is essentially a direct payment which is option 1. Their legislation also offered what’s called option 2 which is support arranged by the user but where you have a third party providing that support for you so that you’re almost having a broker to do it for you. Option 3 which is essentially service as is, it’s support organised and provided by the local authority and it’s pretty much a traditional way of going on, and option 4 which is a mixture of all 4 where people might have some direct payment, some provided by a third sector and some provided by the local authority, or 2 of the above. The other thing to it is to locate this a bit within the Scottish Government’s desire towards creating a much more participative community, and the Scottish Government has a real push towards developing or promoting a notion of deliberative policy responses about community participation, about co-production, about working with users and service providers working together, about developing partnerships not just between users and providers but between providers. So we’re trying to build up different arrangements and I think the other thing as well that we have to remember to frame where we are now is within the health and social care integration in Scotland after the Public Bodies Joint Working Act which is bringing together through the integrated joint boards health and social care. So I think these are the 2 big pieces, and they’re working together. So massive, massive change if you think in the 2 of the largest pieces of legislation that the Scottish Government have introduced occurring one after the other. We went to a radical form of Self-Directed Support or an attempt to transform the provision of social care and we got transformative policy in health and social care where we’re bringing together health and social care - 2 bodies that had been apart - and there’s a slight other shift as well in Scotland which marks it out significantly different from England is that at least in terms of the language we’ve rejected a private sector solution. There’s not the push to the market or market-led solutions that there is around personalisation in England. So I think in England there’s a desire for 80% of the social care to be delivered through the market, whereas that’s never here. It’s not about a market-led response although it’s about giving individuals the rights to go somewhere. So sometimes there’s a bit of a clash. We don’t have personal health budgets for example but we have personal social care budgets, and that sometimes can be a bit of a clash. So we might talk about it as we go through, and so what we sort of tried to start to do was as we’ve worked through this Charlotte and I have been working in this area for a long time and we wanted to see what was going on in here, and about 5 years ago in 2014 we sent out a first Freedom of Information request to local authorities and we asked them if they could tell us how many people were on each of the 4 options of social care. So we went and sent this to all the local authorities. We also ran a series of focus groups with individuals and interviews with people working across, and we’ve done this for a number of years now. So we’re just trying to track and our key thing is to see whether when we talk about this we’ll move on to talk about if the evidence is whether or not SDS has had that transformative effect that it was hoping to achieve. So I’ll hand back to Charlotte who’ll talk about the Freedom of Information data.

CP Yeah, so over the last 5 years as Nick said we sent out a Freedom of Information request to all the 32 local authorities asking them the question what are the total number of users currently receiving SDS for each of the 4 options, and we’ve done this in I think about the second week of March over the last 5 years, and the data for this is really quite revealing in terms of how this so called transformative effect is impacting on social care. So over the last 4 returns that we have we’ve certainly seen a growth in the number of returns. We started off 25,000 users in 2014 and now our latest return from last year was just over 56,000. So the number of users actually recorded for the take of SDS is obviously on a positive trajectory which is obviously good to hear. However, what is revealing from the data we have is the really limited change in the 4 options and this really hasn’t shifted over the period of time that we’ve asked for the information back. So we have around 10% on option 1. In 2014/15 this was 10% and our latest return this was down slightly to 8%, but this has kind of remained at around the 10% mark. In option 2 we started off in 2014/15 3% using option 2, a high of 7% in the last year, but again a slight shift in those areas so it’s a slight change in what was kind of a new area for many local authorities, but what is the main issue of perhaps concern or interest is that option 3 which is the kind of business as usual approach, that remains at around 80%. So we had 82% in 14/15 and that has remained now at 81%. So really if we were to say that SDS was really encouraging a transformation in social care we would have seen a much stronger whittling down of that option 3 figure, and the option 4 which is kind of mix, that has remained pretty steady at 4%. So the headlines from that data really shows that there hasn’t been a significant change from the SDS legislation. From that obviously we backed it up with some qualitative data. So we spoke to a number of leads in local authorities on SDS and also disability organisations and other related organisations in social care and in health who have an interaction within Self-Directed Support. There are kind of 4 themes that we came up with which I’ll talk thorough from our findings. So first of all as Nick said one of the big themes in the Scottish Government in terms of social care legislation and across a number of different areas has been to have co-production, to have users under the interested parties involved in policy development and policy outcomes, but our first finding from our research shows that this is really at an early stage and there are real problems in understanding what co-production involves and really what it can achieve, and certainly to quote from some of our interviews, one interview with a lead SDS officer said to me, “The majority of people we support would be option 3 but that’s not necessarily because they’ve chosen option 3, it’s probably because we’ve not got around to asking what they want.” So again this idea of co-production, this kind of dialogue between users and the policy planners and implementers really hasn’t got off the ground yet from our experiences, and certainly other lead officers said that they don’t think they’ve really invested sufficiently in winning the hearts and minds of frontline teams. As with direct payments many years ago there was a real boundary or barrier between those promoting direct payments from the frontline and users, and really if that gatekeeping role isn’t pushing forward the policy it’s really not getting through to potential users of Self-Directed Support, and our research would say that’s still very much the case. So moving on from that our second theme is around policy overload and kind of changing culture of care - and Nick touched on this a bit really - the context of when Self-Directed Support came into play, and this was obviously a massive cultural change for local authorities and very much promoted as a radical policy change in the environment of social care, yet 2 years on from this we have the introduction of health and social care integration which undoubtedly you know again a massive, massive change within health and social care. So whereas kind of local authorities and user-led organisations were trying to catch their breath with SDS, 2 years later we have yet another policy coming into play, and one of the disability-led organisations I spoke to said, “We’ve had this big push on SDS that’s kind of been and gone and now authorities are really interested in health and social care, and certainly the fear from a lot of our members is that people are going to stop caring about SDS.” So trying to keep the engagement and the interest and obviously you know there’s only so many hours in the day where practitioners and frontline workers are trying to get to grips with a massive culture policy change. On top of that we then have health and social care coming into play, and there always has been a different relationship between health and social care sectors and we’ve found very much that the health side of things perhaps hadn’t engaged with issues around co-production, they were very unfamiliar with the idea of how it works. People were saying to us that really health doesn’t get co-production. The idea of giving users money directly in health is very, very at odds with the kind of health system we have in place particularly in Scotland. So this idea of SDS and a new role of partnership working, where does health fit in that? That’s really problematic for many practitioners. There were pockets of examples where the 2 sides were meeting up and starting to engage really well but there was a sense that perhaps health was the dominant partner, and if you’re the dominant partner you’re perhaps not going to engage with the principles around co-production which was starting to infiltrate through social care. I think that was a real difficulty for many particularly on the social care side, and just a clear lack of understanding for many people working in health, just this cultural mismatch in terms of looking at health. The final area to look at is issues around austerity and certainly you know this is the elephant in the room in terms of how SDS has been rolled out and you know it’s obviously something that the policy planners didn’t foresee. In many ways you could say it was really unfortunate that SDS came at a time when austerity was really hitting particularly social care budgets in terms of how it was going to be implemented, but certainly it undoubtedly has a really important effect and a dramatic effect in how SDS can be used and really the relationship in some areas between seeing personalisation, seeing Self-Directed Support as a tool in an austerity programme. That relationship can’t be divorced in some areas. It may not be entirely fair but in some local areas that is certainly the way it’s been seen. And again thinking about our interviews, one of the third sector organisations said to me, “I think you have to acknowledge that the way a particular local authority have gone about their promotion of SDS has been to hide a budget cut.” So people are very cynical about seeing SDS as merely seeing it being a tool to get rid of services, and again it’s looking specifically at particular groups of users. Commentators like Ed Hall have focussed on the impact of personalisation with those with a learning disability and you know certainly the kind of loss of collective support in communities for particularly groups who perhaps in the past had a day care centre - and there are obviously very strong arguments particularly from the Disability Movement about the nature of that kind of provision - but certainly any loss of collective support has left many disabled people very isolated in communities, and going back to work by Ian Ferguson in previous works you know very critical of personalisation and seeing it as very much of a neoliberal project. He talks about personalisation in terms of enforced individualism and certainly when you lose collective services through austerity that kind of you know isolation through service provision is really important in the lives of many disabled people using SDS. So it has been a very difficult context to which SDS came on-board, but undoubtedly it is an important theme in terms of really looking at whether SDS is a radical and transformative policy at this stage. They’re kind of our main sort of policy themes, just handing back over to Nick to bring some concluding thoughts together.

NW To conclude, I don’t think we can argue that SDS has had the transformative effect that it was hoping to have, and I suppose the question really becomes is the problem with the implementation or is the problem with the policy or is it with the actual legislation and the way it was written out, and I think that whilst we’re at the very early stages you know we’re only still I mean we’re 5 years post it, these are big cultures to change. I think that maybe it’s time to reflect and to think about where we go next and how do we take it forward. The data would suggest though that there are problems across all 3 with the implementation, with the policy and with the way that the legislation is written, but I think we have to as well frame this within an international perspective, and our problems in Scotland with personalisation aren’t unique. Work by Colin Slasberg and his colleagues in England for example have pointed to a lot of problems. There’s been problems across social care in where they’ve implemented personalisation in Europe, in North America, in Australia. I’ll talk about that in a minute. I think we’ve seen this across that way and part of it as Charlotte pointed to is because there’s been a cut in the support offered. It’s trying to put things forward in an age of austerity. We’re seeing cuts and worsening of the working conditions of social care staff and so on. So these are, you’re trying to put these things forward at a time when I think Charlotte in an early paper with a really nice title for a paper, something like “The Right Policy at the Wrong Time” or something. So you’re trying to roll out something that’s right. Like anything they need investment and you can’t put a transformative change and have less money going in, and I think that we’re seeing you know the work growth in 0 hour contracts for social care workers and worsening of the working conditions, less holiday pay and sick pay and pensions entitlement across the social care. So clearly it’s harder to get workers to work well under those conditions. There’s issues in personalisation in countries where they’ve had well established and long established personalisation such as the Netherlands, Sweden and Belgium, and countries like Greece and Portugal have withdrawn from this entirely because they haven’t been able to roll it out, and so it’s been a problem. So there are issues around austerity but it’s also clear that some other problems with the implementation are not to do with austerity. So Colin Slasberg and Peter Beresford talk about a link of evidence, a lack of evidence linking personalisation to transformative change. They’ve looked across the law and they can’t find, it’s a desire and it’s a language that surrounds it but there isn’t really the evidence to suggest that personalisation has produced the transformative change that was promised. So it’s a belief there. And then at the National Audit Office in their review of personal budgets in England underlines this, they found that the department of health’s monitoring of the impact of personal budgets in social care was so poor that no firm conclusions could be drawn as to the success of the policy. So it’s a discourse that surrounds it but this is a great way of transforming social care but the evidence might not be there, but I think that we also have to remember though that where they were, direct payments are transformative. So for individuals who were given direct payments the evidence is it can change their lives. So we don’t want to say it’s a system-wide approach that it might be not achieving a transformative effect, but for individuals giving individuals, some individuals who are able to take the most advantage of it, direct payments can be transformative. So I think there’s a tension there between some individual’s lives being transformed and the system being transformed. So whether you can you know multiply up, and so I think that it is important that we have this in there, and option 1 is in essence a direct payment and I think that the almost remaining the same number of people on option 1 over the 5 years of SDS is suggesting that it’s not having that effect. At the start when SDS was first rolled out option 1 was seen as the gold standard but it seems as if there’s a pull back from seeing that as the gold standard now. So that’s an interesting thing and I think that you know direct payments were a bottom up demand from disabled people’s, how disabled people’s organisations wanted their social care implemented. SDS and personalisation as envisaged through the work of Charles Leadbeater for example - who’s driven a lot of this - is a top down imposition. So there’s a tension between a bottom up desire for radical responses and there’s a possibility that the way that the act has been implemented - especially at the local level by smaller groups - has moved from the goals of independent living that would be promoted through direct payments towards a move consumerist model of individualised care planning. So we’ve got this tension between those 2. So despite the focus on co-production I think what we would suggest is that its impact so far has been limited and the radical edge of direct payments and the autonomy, the choice, the freedom, the dignity that they have that underpins them are not being rolled out across the rest of, they’re being diluted by support options that enable little positive change. Direct payments sought to transform this and empower individuals. In the guidance published to support the SDS Act the language is very much of an empowerment, inclusion and participation. However, I think that there’s some evidence to suggest that this is not being rolled out in the way that it wanted to be. One of the problems is that I think we’ve come to this notion of co-production, that all the language of co-production talks about co-producing with the users, but nobody’s co-produced with those people who deliver the service at the frontline. So we’ve got the top, they’re being told to change the way they’re working. They haven’t been involved in the development of new policy. So there’s almost that they’ve felt that they’ve been left out, and it can’t be a top down dictate imposed on the system without buy-in at all levels. I think there’s a bit of a danger of that and I think that achieving meaningful user engagement with SDS remains a problem, but we can see this across the world and the recently implemented NDIS in Australia - National Disability Insurance Scheme - it points to the same thing. It’s saying that disabled people are being marginalised through this and I think that one of the things we have to remember that the difference between the Australian scheme and the Scottish scheme is that the Australian scheme is very heavily invested in and there’s a lot more money being put into NDIS than there was into SDS, which SDS rolled out at the time of retrenchment whereas NDIS was invested in and it’s a generous scheme, and I think that one of the things that we might see is that the policy of SDS has appropriated the language of the Disabled People’s Movement but the needs of disabled people are still being met more in individualised basis and it’s not really going through, and I think that you know there’s no doubting that the potential for the SDS to support that there’s both less individualised and more with the focus on community than the English policy. The legislation has much more potential for that but I think there’s a danger that whilst the discourse that surrounds this policy is progressive it does appear that the practice on the ground is not able to meet the high aspirations of the policy, and if the real benefits of SDS are to be realised then people need to bring social care providers more in line with the policy, and I think also looking at it it’s clear I think even in England where DPs have been much more aggressively rolled out - or direct payments, sorry - much more aggressively rolled out than they have in Scotland, they’ve only got up to 20% of people on direct payment. So it doesn’t appear to be a universally popular option. It’s very, very - I’m not saying it’s not good. It’s really good for those people it works for it’s fantastic. There is no better system but it seems that there are some people who don’t want it or they don’t want to take it up and maybe we should be looking at some other models that are available, and I think one model that we might want to look at more closely is the Norwegian model where care isn’t provided through an individual where people are given a cash equivalent to buy the service, but the care is provided through cooperatives, so people user-led cooperative organisations run by disabled people, and they provide the equivalent of option 2 almost, and we haven’t seen investment and for those to work we’d need investment in the user-led cooperatives to help them set up and become the organisations that set it, ‘cause I think there’s a bit of a tension as well in Scotland in that in England there’s as I said there’s an explicit assumption that the market will lead, but here we’ve got an assumption that we won’t use the market but the markets are coming in through the back door and we don’t want to use it, and so this is a real tension and maybe if we want to take this forward something like looking at the solutions that the Norwegians have been using around this might be a way of taking this further forwards, and I think one of the things that I was thinking when I was reflecting is we’ve been quite pessimistic. We don’t want to be pessimistic ‘cause the provision of social care in Scotland is better now than it was, you know the SDS has I think direct payments and so on there are better options available, but we wanted it to be really realised and for it to have the transformative effect it can do, and I think that you know Charlotte’s point as well when she talked about the closure of communities and collective support. Moving back to a model like the Norwegian model with cooperatives might see a re-emergence of collective support to come ‘round, but around a more progressive collective support than one that’s currently available.

SM Thank you both very much.

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