Podcast Episode: Adults with learning disabilities: economic outcomes
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.
Michael: On this episode, I went to speak to Rob Watts. Rob is one of the Researchers of Fraser of Allander Institute, and they’re carrying out a new project on adults with a learning disability in Scotland. So I was asking Rob about his research and the work that they do.
So Rob, first of all, can you tell us about the Fraser of Allander Institute and what kind of work that you do?
Rob: Yeah, sure, so the Fraser of Allander is an Economics Research Institute at Strathclyde University in sunny Glasgow, and we provide research and commentary on the big issues facing our economy and our society, both in Scotland and across the UK. I guess we see our role as kind of informing public debate around these big issues, so that when we make choices, they’re based on evidence and facts. And I guess the reason I’ve been invited onto your podcast today is because one piece of research that we have ongoing at the moment is a big piece of work looking at the support and opportunities available to adults with learning disabilities in Scotland. And this is quite a broad research project, because we are looking at many different aspects of social policy that people with learning disabilities have told us are important to them. But it all ties in with the Scottish government’s economic priorities around increase of growth and building a wellbeing economy – because this is a group of the population where outcomes are on pretty much every measure of wellbeing that we have, have been consistently inferior to the rest of the population. And so, if we really want to deliver inclusive growth, then people with learning disabilities need to be part of that. And so the project will be looking at issues like employment outcomes, social security system and how that impacts people with learning disabilities … but one big area that we focused on is the social care system, because that’s quite a big mechanism for providing the support that enables people with learning disabilities to live independently and have the best quality of life possible. And so we wanted to research how the social care system is impacting on the lives of people with learning disabilities, the challenges that it’s facing, and consider where we go as we recover from the pandemic.
Michael: I suppose we will get into the details of the findings, you know, specific findings that you basically found, but one question I wanted to ask you, and I don’t think I can avoid not speaking about Covid on a podcast now … but was your plan to do this research before Covid, or was it because Covid is here now, and you thought well we need to do this bit of research?
Rob: It is a great question, and actually we had planned the whole research project before the pandemic – it was created and thought about before the pandemic came. And then, as we started doing the research, that’s when everything was locked down that first time. But I guess the pandemic, like you say, it’s central to everything now. You can’t research any topic, it seems, without touching on the impact of the pandemic. And we know that the pandemic has been devastating for many people with learning disabilities and their families, and in particular the support that people rely on through the social care system has been restricted – and so that did play a big part in the report and the research that we’re going to talk about today. But it wasn’t planned like that – this would have happened without the pandemic, because as I say, outcomes have been inferior for a long, long time, and there is much progress to be made.
Michael: So let’s speak about the findings then. You … well if you can tell us what you were specifically looking upon, and then maybe just touch on each of them? Because each of them relates to people’s lives with a disability, and I’m passionate about them all actually, so … especially the ones about transition as well, because that’s really a big issue, and it’s been a big issue for people with learning disabilities for years and years and years. So yeah, if you want to kick us off with that, if that’s okay?
Rob: Yeah, absolutely – so kind of headline finding, the main takeaway is that the system is not doing enough to enable people to live safe, secure and fulfilling lives, and there are five reasons why we reached that conclusion. So we could just talk about each of those five in a bit more depth. So the first one is that over the last ten years, the financial backdrop in the public sector has changed, and we know that the impact at local government level, or at a local government level has been significant. And that’s important, because that’s where the social care system is delivered. And this changing financial backdrop has resulted in the loss of some non-statutory support for people with learning disabilities. So local authorities have some legal obligations to deliver some support services, and these have largely been protected from cuts. But this means that those non-statutory services have been more vulnerable – and that’s kind of interesting, because the Scottish government has the ‘Keys to Life’, which is it’s Learning Disability Strategy, and Keys to Life isn’t just focused on health and social care services – it talks about the importance of people with learning disabilities accessing their human rights, relationships and friendships, paid employment opportunities, and I guess just living independently as part of society. But if that’s going to happen, people with learning disabilities should be supported to enable them to do those things. But a lot of the non-statutory support services need exactly the kind of support that has been scaled back.
Michael: You know, like Housing as well – that’s really a big issue for people with a disability all over Scotland, and when we speak about Housing, it’s the accessible housing as well. And in terms of transitions, you know, like I’ve heard some stories in the past – and obviously when I was at school … many years ago now … that there was like a big gap when you leave school, you try not to fall through the net. Some people do, because they don’t get the right support or the right help. Is that what you kind of found as well?
Rob: Yeah, so Housing and Transitions are two more of those five reasons that we reached that conclusion. So on Transitions, we conducted interviews with young people who had recently transitioned into adulthood and I guess what we found was that it doesn’t seem like there is any kind of systemic or structural support in place as people have reached that age where they are leaving school. And one thing we hear consistently and repeatedly is that there is this kind of cliff edge where all the support that’s around you when you’re at school suddenly disappears, and you’re left with all these big choices to make. And yeah, so some of the testimonies we heard were really powerful, and just highlights why this is an important issue. And Housing plays into this as well, as you touched on. It’s essential for people to live independently, that they have accessible housing, but there just isn’t enough of it. So this lack of supply constrains choice, and it results in delays in the system. We heard one example of a man who has been looking to move out of his family home because his parents are in their 70’s, and he’s been waiting 8 years before he could be offered suitable accommodation. And that’s the kind of result from an under-supply of accessible accommodation for people with learning disabilities.
Michael: And that’s where the difference is, because if it was people without a disability, like you or whoever, then you would move out of your house tomorrow and move into a new house on the same day. But for people with learning disabilities, as you say, 8 years down the line … oh maybe people would be waiting 12 years, or you know, whatever their case may be as well. I could spend all day speaking to you about your review, because I find it very interesting. But Self-Directed Support, tell us a bit about that, because I know from the work that I do, is like if you speak to different people from different areas, they give mixed reviews about Self-Directed Support. And also when you go into different Council areas, that’s not an option – that people still don’t really know about Self-Directed Support, even though the legislation has been here for many years now … but people still don’t know about Self-Directed Support, and also about the options.
Rob: So this is another important point that you raise. I think there seems to be almost a consensus that Self-Directed Support, on paper, is a really good idea – this idea of giving individuals more choice and control over the support they receive … I think most people could get behind that. But the implementation seems to be patchy and there seems to be quite big differences at different local authority areas in how the legislation is being implemented. And the result is that a lot of people with learning disabilities are not getting the benefits from Self-Directed Support that they could be. In particular, one thing we found was that people are not getting the support to make informed choices about their lives – and that includes choices about the support they receive through the social care system. That lack of support to make informed choices is holding back the benefits that could result from Self-Directed Support.
Michael: I wanted to go back to the current crisis that we’re in just now, Coronavirus, and how has that kind of impacted people’s lives? Because obviously you’ve heard of stories in the media, like people’s care packages have been cut because of the Coronavirus – and the kind of PA’s, Personal Assistants, they have been cut as well through staff and all that. So their Personal Assistant might have to support five different people, if you get what I mean, all on the one day. So have you heard any kind of stories about that, or …
Rob: So the pandemic is like this fifth reason that we reached that conclusion, and I guess like we could do a whole podcast just talking about that. I think the first thing to say when we’re talking about the pandemic, is that it’s created new problems which you’ve touched on, and we can go into a bit more detail on that – but also it has exacerbated pre-existing weaknesses in the system, and pre-existing inequalities, which have just been kind of exposed and made worse by the pandemic – but they were already there. So in terms of the impact, yeah, you mentioned the restrictions around the support people can receive. So that can include Personal Assistants, day centres closing is quite a big one – and there is a lot of, I would say concern amongst many people that we have spoken to, that after the pandemic, the support won’t return to the levels that it was before the pandemic. And yeah, that is causing … I’ll use the word ‘concern’ amongst many families.
Michael: Yeah, I suppose it’s kind of like shining a light on it even more, even though we knew. One quick question I would like to ask as well would be – we can’t really afford to go back to the way it was for disabled people, because we know it wasn’t working, i.e. we can’t afford to go back. We need to build a better future. And I suppose because everybody’s in a lockdown, or semi-lockdown, or call it what you will, and locked up in their houses at the moment because they can’t get out. But when they do start going out, this is the time when we really need to speak to the likes of, you know, Scottish government and local government to build a better future for people with disabilities, and make them kind of like front and centre. Because I know by experience and by speaking to a lot of people in the past, that this decision has been made on behalf of disabled people – whereas, you know, like you had a decision to make, you would make that decision. But because like people with learning disabilities, it’s like taken away from them, and it’s a bit like choice and control. And it’s a bit like Self-Directed Support as well, because that was meant to be, you know, that’s your pot of money, you do what you want with it. And that’s not there for people with disabilities. So, in a roundabout way, what I’m trying to say is we need to build a better future for disabled people than before like Covid, because it wasn’t really working.
Rob: Yeah, so one thing I find really striking is that … you remember, I think it was recently, Jo Whiley, her sister … and it was in the news about vaccines and so on. And before that it didn’t seem like the experience of people with learning disabilities during this pandemic was really (… unclear). I don’t think people were really aware of the harms, the very big harms that are being caused to this group of the population. And it took a celebrity to kind of push it up the agenda. And so I think you touched on it, in what you said earlier, about the importance of elevating the voices of disabled people – I would wholeheartedly agree with that. But you also mentioned about building a better future as we recover from the pandemic – and I think this is where we can look at some of the positives of the last year. And what we found in our research is the organisations who deliver social care were faced with this big challenge – suddenly everything was locked down, restrictions based upon them – but people have come up with really creative and innovative ways to deliver support – and perhaps that’s something that we can build on in the future. You know, some of that might be using new technologies and making sure that everyone has access to the technology. Some of that could be in the way that we meet each other, and whether that will continue after the pandemic. So these kinds of opportunities will need to be discussed, as well as talking about all the harms that have been created as well.
Michael: Finally, your findings about the financial crisis – obviously, that definitely ties into Self-Directed Support – but I would imagine it ties into a lot of things as well, like Housing as well, I suppose?
Rob: You’re talking about the financial crisis from … I think it was just more than 10 years ago … the impact that’s had on the public sector finances?
Rob: So if you look at the expenditure on Learning Disability Support Services, actually it has been relatively well protected. But that’s the kind of statutory stuff that I was mentioning earlier, like essential support services. But that means the impact on non-statutory support services have been greater – and isn’t always … or isn’t immediately noticeable. So for example, one issue that has really not improved for people with learning disabilities for many years is access to the labour market and opportunities for people to work. Not everyone with a learning disability can and wants to work, but for those that are in that position, they don’t seem to have the opportunities to get into the labour market. And employability support is one of those things that has been scaled back, and doesn’t immediately … you know, it’s not immediately attributed to people with learning disabilities, but it does impact on them in quite a significant way.
Michael: Last question, because I can ask you … as I say, I could ask you lots of questions. So you did this kind of research as well at the same time as Derek Feeley did their research on social care. So I just wanted to know if there were any differences in the research, and should I be asking something different to people, or were you getting the same answers that Derek was getting or, you know, whatever?
Rob: Yeah, so it was really good timing – I think it was 2 days after the Feeley Review, we published our Report. So this was the Scottish government’s independent review of the social care system. They were looking at the whole system, whereas we were looking at it specifically from a learning disability angle. But I guess our work raises questions about what the system of support for adults with learning disabilities is there for. Is it there to help people get by and avoid a crisis, or is it there to act as an enabler for people to live fulfilling lives and access their human rights? And the Feeley Review kind of touched on that as well, because they talked about the need to “shift the paradigm”, is this phrase they used, and you know, social care isn’t about “managing need”, but as enabling rights and capabilities. So I guess there are similarities in that sense, but the difference between our research and the Feeley Review is we’re researchers, so we’re presenting evidence. We’re not advocating any policies or solutions – that’s not our role. But the Derek Feeley Review proposed a National Care Service – so it does look like there might be some big changes on the way, especially with an election and a recovery from the pandemic on the horizon. So I think it’s reasonable to argue that we might be facing a key turning point, or a key decision point, and what our Report highlights is that for people with learning disabilities, who make up quite a large proportion of social care users, their experience of the system is not always the same as other groups, and any changes to the system will need to bear this in mind.
Michael: Okay, thanks for your time.
Rob: Thank you, it’s been great.
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