Foundations for self-directed support in Scotland
Foundations for self-directed support in Scotland

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Foundations for self-directed support in Scotland

4.6 Is personalisation really for everyone ?

You have been exploring personalisation, and one of its vehicles — self-directed support — in relation to children or adults (or maybe both). You may remember Neill's quote near the start of this section:

The experience of many people who have to rely on human services for their support is that ‘risk’ is the reason given to them by services why they cannot do the things that other people are doing every day.

(Neill et al., 2008)

Is risk of harm a reason not to offer people the opportunity to direct their own support? Previous research has identified major inequalities in access to direct payments, especially for people with learning disabilities, those with mental health problems and older people (Ridley et al., 2011, p.73). One of the reasons of this is that practitioners and organisations may make decisions based on 'generalised views about the capacity or ꞌriskinessꞌ of certain groups', especially people with mental health problems (Carr, 2010, p. vi). Self-directed support has taken off even more slowly for children and young people — and there are all sorts of questions about which children in which families should and could benefit from this type of support. As you will see in the next activity, this issue was also explored by our panel in Dumfries.

Activity 4.9 Personalisation for all?

(30 minutes)

Watch this video of the panel discussing just who might benefit from personalisation, including self-directed support. Make notes in your learning log [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)] to answer these questions:

  1. Do panel members think that personalisation is unsuitable for some people? What are your views about their opinions?
  2. What tensions about personalisation are identified in this video? Make notes on ways in which these tensions might be addressed.
Download this video clip.
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Transcript

Willy Roe
The next one I’m going to ask John if he would respond to. This is a question from Lesley Law.
Lesley Law
Thank you. Given the lengthy processes and time scales that can be involved in putting an SDS arrangement in place, how relevant is it to crisis work or emergency responses?
Willy Roe
Thank you. John.
John Alexander
Yeah. I think that’s a very good question. I spoke earlier on about, in response I think it was to Keith’s question, about co-production, that one of the lessons that the learnt was about the importance of patience to allow people to build trust in a new way of working. And maybe the downside of doing things at the right pace is that it’s described as laborious, so whichever side you approach that from.
But I think the basic principles that should underpin good self-directed support work, which are about working with the person and allowing that individual to express his or her wishes as clearly as possible and seeking to give effect to his or her wishes, doesn’t go away because they’re having a crisis. It might be more difficult to get that articulated. But we’ve got the skills, I would expect, as professionals on the front line to help that to be done. And it’s very important that we don’t kind of effectively operate one set of standards in what we would regard as being our normal day activity and another set of standards where we’re operating in emergencies and in crises.
Again, I mean, I keep sounding like a dinosaur over there. I should stop saying this, but going back to my early days, crisis intervention was a very important model in terms of social care intervention. But the theory behind that was that at a point of crisis, an individual’s normal coping mechanisms had self-evidently failed. There was a fantastic opportunity if you did that piece of work of intervention sensitively to help them to put in place new coping mechanisms that wouldn’t just help them to get through that particular challenge, but would maybe stand them in good stead in the longer term.
So I think it’s an argument for saying I think that we shouldn’t try to compartmentalise and say that self-directed support is only when we’ve got lots of time and we can sit down and have a lovely cup of tea and talk about things. We need to build in that principle that the individual is the key partner in whatever decisions are taken and hold onto that in all of the activities that –
Willy Roe
So it’s not just for the easier days or the people who are –
John Alexander
That would be my exhortation.
Willy Roe
Quite a very straight answer, and probably quite controversial in some quarters. But thank you very much for it. Could we move to Carolyn Little’s question? Carolyn is in the Use and Carer Involvement Project here in Dumfries and Galloway.
Carolyn Little
Thank you. How will self-directed support work for those who are subject to legislative restrictions, for example in mental health or criminal justice?
Willy Roe
Who would like to respond to this one?
John Alexander
I can –
Willy Roe
It would be useful if you would John, in your position. Yes.
John Alexander
I mean, having said earlier on, I spent most of my career in adult services and community care, I also had a period in criminal justice social work. And I would be typically involved in supervising people who were under some form of statutory order from the court. And essentially the kind of contract, the deal was that there are certain nonnegotiables. The probation order places certain nonnegotiable requirements on you.
But what we actually do within the terms of that basic contract is for us to talk about and to decide. So how I can best help and what we need to do together to make a difference we can negotiate. And I think it’s similar in some ways for some other statutory areas in relation to mental health. People perhaps have periods where they’re more capable of expressing their wishes than others. And we have to be flexible enough to ensure that we hold onto the principle that where possible we work with people.
So within the constraints of whatever the legislative provision is which will set some pretty clear high-level constraints on the nature of the engagement between the professional and that individual, how the professional and that individual structure the relationship within that still is there to be debated and discussed. And I’d like to think that we should embody the principles of co-production and partnership in the way that we work with people, notwithstanding some of these broader legal constraints that we work within. And that’s something that social workers have been used to doing for a long time, because the way that social work in Scotland has been organised since forever is that we actually have care and control responsibilities placed upon us. And I think we’re quite good at managing that tension.
Willy Roe
Carolyn, would you like to come back on that? Does that match your expectations or hopes of the answer? Or what is your experience in relation to this?
Carolyn Little
I think it’s very difficult, because everybody will be under different legislative processes. I think the personalised approach has to be taken wherever possible, regardless of whatever legislation precedes that. It’s ensuring that people have choices about some of the things that aren’t necessarily part of the process of the legislation.
Willy Roe
Thank you very much for that. So again and again this afternoon in this session we’re hearing the importance of setting this in its wider context, in its relationships with welfare cuts and whatever it is and in the context of other pieces of legislation, of practise, of life circumstances. And that seems to be a recurring message that we’re hearing. Would that be right?
John Alexander
I think that’s a fair summary really, yes.
Willy Roe
Thank you very much. Now Anne Ritchie, from the University of the West of Scotland, has a question about the fit between – well, you ask the question rather than me.
Anne Ritchie
Does the panel envisage any particular challenges in rolling out self-directed support into the children and families arena, particularly in social work rather than health?
Willy Roe
Good. Let me give you a rest while we take some other experiences. Do the test beds show anything of this? Is the experience of your research and you work in England and abroad, Kirstein, relevant here? Let’s hear a few voices.
Allie Cherry
Well, in terms of the test sites, we didn’t have a focus on children particularly. But in the extended rule, we are starting to look at how self-directed support might be implemented within children’s services, and working closely with local authority colleagues, including Jill, to see how these could be implemented.
Certainly from – I hosted an information session for parents at the end of last year. And I think one of the issues for parents is, as far as health in concerned, not wanting to rock the boat, being concerned that services, if you enter into the discussion, services might be reduced. There are concerns also from colleagues in health and social work in terms of the duty of care, if duties are delegated to parents or to paid carers.
But at the same time, I think there are certainly opportunities. And we have had discussions around the advantages that self-directed support can bring to families, particularly at times perhaps of – I’ve forgotten the word.
Kirstein Rummery
Transitions.
Allie Cherry
Transitions from children to adult services there. And then of course you’ve got the bigger question of making sure that it’s the young person’s voice that’s heard, and not solely the parents’ voice. So it is something that we are looking in Lothian.
Willy Roe
Kirstein?
Kirstein Rummery
It’s really interesting when we look at international evidence and UK evidence and Scottish-based evidence, of loads of different pilots and different ways of doing it. The key thing that why self-directed support type services work is because they enable flexibility and they enable people to actually put together support and control support in ways that meets their lives.
A classic example of this has been it’s been possible to support disabled parents to be parents in ways it has previously not been possible to do. It’s been possible to support young carers as well, in ways that it’s just previously not been possible to do, partly because of the division that we have into children and families and adult services and older people services, health, social care, education. People don’t live their lives according to these organisational siloes. They don’t sit there and go, oh, suddenly I’ve hit 18. I’m a disabled adult now and previously I was a disabled child.
And you brought up the issue of transitions. That is particularly important if people have packages in place that involve parents, that involve young carers, that involve disabled children, it helps them make that transition to adulthood, to controlling their care and support, to moving from school into work or school into further education so much better. We have wonderful examples within my own university of students who have brought self-directed support type packages with them from school into the university arena and therefore had incredible success in further and higher education that would otherwise not been accessible to them.
So I think there is the potential. But again, you have to start small. You have to kind of work with things that you know will work. You have to build up trust. And you have to create kind of very flexible support packages and take a little bit of risk around the edges and the margins of things for things to work.
Willy Roe
Thank you very much. Is there an age below which the voice of the young person doesn’t count? John?
John Alexander
Well, I suppose there’s always a judgement and an assessment about when does a child have sufficient age and understanding to express a wish. And I think our default position as social care professionals would be that we would err on the side of listening to what the child had to say and weight that in the balance.
But I mean, I think going back to Anne’s question, and I think listening to the comments that Allie and Kirstein made, I don’t have anything really to add to those. But it seems to me go to back to Anne, the question, it seems to me that there are as many opportunities as there are challenges in ruling it out.
And we’ve had experience in Dumfries and Galloway here locally of personalised packages and structures being placed for children and families, particularly for disabled children. And we’ve seen some of the benefits that have been highlighted by the other speakers.
Willy Roe
I thought it was very interesting, the announcement earlier this week of the local primary school in Dumfries and Galloway that is the only school in Scotland to have won the top award of five excellent marks in the new kind of assessment of schools. I’m sorry. I’ve forgotten the name of the school.
John Alexander
Hightae.
Willy Roe
And I listened to the story about why it got top marks of five excellents in a row when no other school in the country has. And essentially, the message boiled down to personalisation, peer support, and co-production, because the young people, aged 5, 6, 7, 8, 9, 10, and 11 are involved in choosing and shaping the content of the curriculum and the way they do their learning. And that came from the head teacher of the school.
So I ask the question about when are you too young to have a voice that matters. And in that school, that local school, it just seemed that from age five was a really good starting point for young people to have influence, have a voice, and have a role in shaping what we do. And if that indeed is the research evidence out of that example, it would be quite powerful.
Now, we’re nearly into the final set of hurdles now, or final furlong I think one used to say, before metric measurements came in. I don’t know what you say nowadays. But before we get into the final furlong, Clare Bannister-Phillips has a question. Clare?
Clare Bannister-Phillips
Does the panel think that there are sufficient arrangements for advocacy for people who may be less able to speak for themselves? I’m thinking particularly of older people, those who’ve lost mental capacity, and people receiving end-of-life care.
Willy Roe
Thank you very much. Now, the advocacy issue is really important. And it’s the first time it’s come up explicitly, though it’s featured in some of the responses. Who would like to pick up on this question as we approach the end of the session?
Allie Cherry
I think without taking up a particular focus on older people, I did have a discussion with colleagues from advocacy providers in Lothian who have recently sort of connected advocacy and self-directed support. So I think it is something that is very important. And I know it’s something that came up frequently in the debates and the different committee stages as the bill progressed.
So at the moment, I think unfortunately, as far as I’m aware, the statutory duty for advocacy is around mental impairment, which wouldn’t necessarily cover all older people. So I think it is something that will have to be considered, because as we’ve heard on a number of occasions today, informed choice is the key to the self-directed support process. And therefore, advocacy is an important tool to achieve that.
Willy Roe
Etienne.
Etienne d’Aboville
Yes. I think I’m right in saying the other thing that’s in the bill is communication. It’s help with communication. And we’re pleased to see that the two have been separated out of the bill when they were previously conflated together, the ability to make decisions and the ability to communicate those decisions being two quite separate things.
But I think it is one of the things that we would be perhaps disappointed in in the bill. It would be nice to see a requirement for local authorities not just to provide information about advocacy services, but actually to ensure that they are available, because that’s the only thing that’s – our experience is that it’s not just people who lack capacity who need advocacy, but there are people across a whole range of spectra who often need advocacy in making sure their voices are heard.
Willy Roe
Thank you very much. It’s a hugely important issue, and one where Scotland probably has a lot of opportunity ahead. Now just one more question in this series before we move into the final round. And Rosie Black has this question.
Rosie Black
Hi. This is probably for John, sorry. How does this self-directed support fit alongside other policies within the local authorities, such as the free personal care and eligibility criteria for older adults?
Willy Roe
John.
John Alexander
Yeah. I mean, I think we have to make sense of the interaction between a number of different factors as the new legislative responsibilities contained within the bill when 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 do 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 do 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 do 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 do 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 do 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.
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Discussion

All the panel members make it very clear that they think that personalisation through co-production is central to the way that professionals and organisations should be working with service users and carers. As John Alexander says about self-directed support in crisis situations, personalisation is not just for 'easier days'. They debate a number of other tensions and challenges, for example:

  • personalisation and children and families — and ensuring that the young person's voice, as well as that of the parents, is heard
  • Personalisation when compulsion (detention under mental health law, offenders on community payback orders, young people on compulsory supervision orders) is involved.

There are other uncertainties that the panel did not discuss, but which you may have thought about. For example, the role of self-directed support for children in need (children who offend and/or who are at risk of neglect or abuse). As we emphasise throughout this section, whether we are talking about children or adults, balancing the risk of harm with control and choice is a complex matter. At the same time, we need to remember that personalisation is much broader than self-directed support , and there are successes to celebrate. Willie Roe's example of the school in Dumfries and Galloway that has developed its very successful curriculum through their personalised approach to the contributions of children as young as five is a reminder that what is being talked about is a 'whole system' change.

You may have thought about other tensions and questions. Kirstein Rummery makes the important point that it is early days for self-directed support in Scotland. Her research in Scotland and elsewhere suggests that we will make the greatest progress in health and social care by starting small and building on emerging successes as individuals and families gain greater flexibility in their care and support choices.

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