12
Examination of witnesses
Adolf Ratzka and Theresa Shearer.
Q97 The Chair: We will be talking in this session about many of the things that have already been mentioned: the personal assistance model, how it works and can be enabled, and what else it needs to work well. I am particularly pleased that we have Mr Ratzka, who is such a major figure in this movement with the example of the independent living movement in Sweden. Thank you so much, Adolf—if I may call you by your first name—for being with us.
We are very concerned about the lack of equality across the adult social care system. To what extent do you think the personal assistance model can enable people with care needs to obtain that equality? How does this compare and why does it come off so much better than any other approaches to social care?
Adolf Ratzka: Thank you for that very interesting question. Personal assistance, as I define it, is services that you buy, either by hiring your assistants yourself or by hiring the services of a provider. But it means that there have to be direct payments from the state, with 100% coverage of the costs. Unless you have that 100%, you will not be able to be equal. You will not be able to afford the amount that you need to become an equal citizen with equal opportunities.
That is the first precondition; unfortunately, it is the money. Co-funding just will not do it. Co-funding will favour the rich who can afford it. They probably have personal assistants anyhow—in the way of their butlers or whatever, only differently. That has been around for centuries. Brutally said, what we need is cash.
The other thing that we need is encouragement and support from peers to help people with extensive disabilities to discover this service, to free themselves of their family members or to get out of institutions and to replace community-based services, which often—at least in Sweden and other countries that I have visited—have a very paternalistic approach. They do not provide enough hours; you only get the necessities. The services are provided in your home. In-home support services—in Sweden, hemtjänst—all point out that you literally are under house arrest, because if you need more extensive services throughout the day you will not get enough hours, so you have to stay home because it is only in the home that you can receive such services. Traditionally, workers in these services are not allowed to follow you out into the community. You are stuck at home. Thus, the alternatives of mum and dad, community-based services or institutions do not give us the ability to get equal opportunities.
Q98 The Chair: Thank you very much. Everything you say strikes such a chord with us. Is this now the preferred, universalised model of care across Sweden?
We have become aware from our taking of evidence that there will be an increasing number of people without children to take care of them in future. We think there are about one million of them at the moment. Do you think this model of direct payments, as you describe it, is the way to deal with that changing demography as well?
Adolf Ratzka: I have already forgotten your first question. Sorry.
The Chair: It was simply whether this is now the main model of care across Sweden.
Adolf Ratzka: Unfortunately not. I would like to see it throughout the age span. I was fortunate enough, in terms of Swedish legislation, to have acquired my disability before the age of 65. Had it been after 65, I would not have been able to get the services at all. Since I received them for my disability before 65, I was able to continue afterwards and even now. I became disabled when I was 17. Now, I am 78 and I still enjoy personal assistance.
The Chair: May I ask what has changed? Did the law change? Did provision or funding change?
Adolf Ratzka: In Sweden, the legislation came about in 1993. It was a time of deep economic crisis. The interest rate was sky-rocketing. The bottom had fallen out of the stock market and the exchange rate was ridiculous. Sweden had bad problems besides that. The harmonisation requirements for joining the European Union meant that the budget had to be more balanced. This reform meant that costs that previously local government had had to pay were now covered by the state. So it was a miracle that it came about in the first place.
. The Social Minister at that time, who I met during my initiative, was impressed by the scheme. He talked about it in parliament, saying that, “Adolf and his friends have taken matters into their own hands and that’s what my party, the Liberal party, wants to support”. Without his involvement, it would not have come about. Since then, the direct payments for personal assistance have expanded, but in some people’s minds they haveexpanded too much. The uptake was incredibly fast—so many people wanted to have the scheme, so many people had been marginalised, kept at home or in institutions, and had not been able to be part of the community.
It is still not widespread enough. For example, most of my fellow older folks, those aged 65 and over, who have extensive disabilities live in old-age homes. They are not eligible for direct payments. So there is a lot to be expanded.
Q99 Lord Laming: That is very helpful. Mr Ratzka, can I pick up where you just finished? You said that there are many people in your circumstances who cannot take advantage of the kinds of services and facilities that you have had. Why has that not happened? Why are they in a different position?
Adolf Ratzka: Because in formal, technical terms the current legislation is limited to people under 65.
Lord Laming: Ah yes, you mentioned that. Sorry. I see.
Adolf Ratzka: But there also has been an attitudinal change: old people are considered not to be capable of managing personal assistants, which is not founded in research. As we all know, people aged 70 today correspond, in mental and physical health, to people aged 50 just a couple of decades ago. There is no research on which to base the prejudice that you cannot direct personal assistants after the age of 65.
Lord Laming: What are the main lessons that you would offer us from your experience? What are the key points that we should take forward?
Adolf Ratzka: That is a big one. There are several points. One would be to think about the CRPD—the Convention on the Rights of Persons with Disabilities—which promotes the right to live independently and be included in the community. None of the other alternatives, the traditional community-based services and institutions, can manage that. It is personal assistance that does that. That is one point.
Another aspect is the economic point of view. For example, I have eight assistants. At the moment, six of them are people who recently arrived from abroad—immigrants whose first job is with me until they learn proper Swedish and can move on to their own field or continue their education and have other shots at getting integrated into society. Without working for me perhaps theur would need to go on welfare.
Another economic point is that personal assistance has allowed me to work and study. As I said, since the age of 17 I have been disabled, a user of mechanical breathing aids, an electric wheelchair—the whole works—and lots of personal assistance. I was able to move from Germany to the US to get my education. I got my PhD there, moved from there to Sweden to work as a researcher at the university, and so on. Personal assistance has enabled me to build a life with work, with relationships and my family. Personal assistance has given me a rich and fulfillinf life. It has given me the ability to contribute to society. That is what we are looking for in personal assistance. It is a tool for contributing to society
Another point concerns our relatives. My wife is not working for me. I am not dependent on her. When we got married, we knew that we would not want to live in a relationship like Siamese twins, where one could not take a step without the other. We wanted to have two independent lives, with the same degree of interdependence as for other couples, as is customary in our culture, where each of us could fulfil and pursue their own career, and that is what we have been able to do thanks to personal assistance. A lot of people who were our informal caregivers can get back to their jobs once their disabled relatives get personal assistance.
Lord Laming: That is an inspiring story. Thank you for sharing it with us, I really appreciate it.
Q100 Baroness Shephard of Northwold: It has been immensely inspiring hearing from you, Mr Ratzka. I want to ask you a really quite detailed question, which is: what is the importance of peer support and peer-led organisations in enabling the development of personal assistance? I think we all feel that it must be essential. If we do think that, how can such organisations be encouraged to grow?
Adolf Ratzka: To go back to the example from Sweden, that is how it started, through peers. I had personal assistants in the US as a student at the university, and then I got to Sweden and saw the miserable lives of my fellow disabled friends, who needed services for the miserable lives they had. I realised that the money local governments were spending on those services would be much better used if we, the users of these services, took control ourselves over the services with that money. We formed a co-operative consisting of personal assistance users, which became a pressure group that did political work. Above all, we started to plan and organise how we would do it—how much it would cost, what the division of responsibilities between the individual assistance user and the cooperative would be, and so on.
The whole thing was not from up to down, it was from bottom up. It was a true grass-roots movement – all based on the peer model. We trained each other in defining our needs in sessions for preparing ourselves for the needs assessment. When the time came for the pilot project to start, we all went through these processes to defend our own needs assessments to get a reasonable evaluation of what someone needed in terms of the number of assistance hours so that they could convincingly convey that to the assessors of the Social Insurance Fund. All such training and support was based very much on peer support. Disabled people interesting in joining the user cooperative would meet mainly personal assistance users at our office as instructors, trainers, and mentors. In that way, they learned - probably without being aware of it - that assistance users can do important and useful work. That’s how we gained the confidence of the community.
In the beginning, most of this type of work was unpaid. Volunteers can do that work to some extent. But in the long run, if you want dependable, reliable, constant and high-quality work, you need to be able to pay staff. There has to be money baked into the direct payments that pays for training, for peer mentors, for peer support sessions, and for the preparatory training for assistance users before they start using assistants. Users need to be trained and supported in how to train and manage their assistants. It is the model of, “You can give someone a fish to feed him,, but it’s better to teach them how to fish.”.
Baroness Shephard of Northwold: I think that will help all of us as we look at what could be usefully adopted as a result of today’s meeting. That was terrific.
Q101 Baroness Eaton: Dr Ratzka, you mentioned earlier that direct payments from the state need to be 100%. My question is about the importance of funding and the extent to which the successful uptake of personal assistance is linked to funding. Can you let us know how it affects the availability and uptake of personal assistance? From an economic perspective, can our committee make the case for this model of care to work? If it can, how should we do that?
Adolf Ratzka: First, as I have said before, personal assistance should be 100% financed through direct payments. If 100% of the costs are paid then, although it may take time for people to understand how it works, after a few years more people than you expected will apply for personal assistance services because in every country our population has been underserved so far. Our family members have been expected to sacrifice their careers and lives where the state does not take up its responsibilities. But if the direct payments are means-tested and do not cover 100% of the cost of personal assistance many potential users might not be able to afford personal assistance. Only the few rich people among us will be interested in using the services.
Secondly, when all the costs are covered—I am talking not only about wages and social insurance fees but also about administrative costs such as payroll, work, accounting and expenses such as assistants’ entry tickets, transportation and hotel costs when travelling—many private businesses will start to offer personal assistance services and compete with each other for this market, competing on the basis of service quality. In Sweden, we now have about 13,000 persons who receive direct payments for the purchase of personal assistance services. Currently, there are some 1,000 providers of services—that is, companies that serve people in their homes, in school, at work, while doing errangs in town, meeting friends or travelling—the Swedish population is around 10 million people. In England, you can expect the same development if direct payments cover all the costs for sufficient service hours including costs of training and support of assistance users through peers and the administrative costs of service providers.
There is an economic case that you can make. Through personal assistance, many disabled people have been gainfully employed. The statistics show that about 16% have been able to be employed with the help of personal assistance. Here I am talking not about the assistants but about the users, whose assistants can follow them to the workplace. Also, as I said before, our non-disabled family members can continue their careers because now they do not have to take care of their children or spouses.
In Sweden, and I am sure in other countries as well, over half the state’s spending on personal assistance comes right back to the state in the form of taxes and social insurance. Personal assistants are typically low-income persons, and as such spend their wages on housing and food, thus increasing domestic demand. They do not typically invest in vacation homes in Spain; their money stays in the country.
Whether providing personal assistance services is more or less expensive than residential institutions - a common question - depends of course on the quality of those institutions. Ifinstitutions are overcrowded and have very few staff, I am sure they will be less expensive than personal assistance services. But that comparison is moot, because our countries have already committed themselves to following the Convention on the Rights of Persons with Disabilities, whose Article 19 enshrines the right to live independently and to be included in the community with the help of support services such as personal assistance.
Baroness Eaton: You have given us a lot to think about. Thank you very much for that contribution.
The Chair: Dr Ratzka, we have benefited hugely from your evidence today in the way you have illuminated the economic, social and policy implications and because you have shared your personal experience with us as a pioneer in this movement and someone who has made so much happen. It has been a great privilege for us to hear about that and we are grateful. One of the things we will look at is how your experience has lessons for us in Britain about a more efficient and humane way of liberating the contribution of disabled people. Thank you very much.
We now move on to Theresa Shearer. I am sorry that you have had to wait, but I am sure you have found it very interesting, and it is lovely to see you.
Q102 Baroness Fraser of Craigmaddie: It is always lovely to have a Scottish perspective, and it is lovely to see you here. We have heard a lot this afternoon about the benefits of the PA model. The difficult question for this committee is: how do we build a national framework? Thinking about your experience in Scotland, particularly with the development—or, in Scotland, the proposed development—of the national care service, we are interested to know how ENABLE built up your PA model of support. What barriers were there? What reasons might there be for low uptake from certain sectors? I know that ENABLE is an organisation built on supporting people with a learning disability but the PA model is wider than that, so is there a perceptual problem? Does it take a national organisation such as ENABLE to make this work? How do we get this stuff to stick? How can we replicate what you have done in the rest of the UK?
Theresa Shearer: I would try to answer all those questions, but it would probably take about four hours, so I will try to be succinct and give a brief synopsis.
You are right to point out the fact that the personal assistant model as it is traditionally thought of is not particularly popular in Scotland, as it is in the rest of the UK, in terms of uptake. Audit Scotland looked at 2017 and recognised that only 11% of people who were accessing statutory services were using the PA model as described by Adolf—the direct payment model. That is the crux of the difference of the ENABLE Scotland model.
To be clear, when we talk about our personal assistant model, it is predicated on the democratisation of the personal assistant model, so you do not need to have a direct payment. We take all the things that work in the personal assistant model, as described by Adolf, but if the family does not wish to take a direct payment, we use the model and work with the family to ensure that they have choice and control. They recruit the team that they want for the individual in their family unit. They determine when they would like that choice and control to be implemented in the care and support for the individual and, most importantly, they have the right to change that care and support, both in terms of ENABLE supporting them and in terms of individual personal assistants.
What we have done at ENABLE Scotland is quite different from what the committee has heard about before, with more traditional social care witnesses talking about more traditional social care provision and, to Adolf’s point, the PA model when it comes within a direct payment. That is the first thing. I do not think that in Scotland and the rest of the UK we will necessarily have huge uptake in the number of people taking direct payments. What we can do, by looking at the PA model and implementing it across the provider network, is ensure that those principles of equity, choice and control, and a pathway to independent living in your own community, are asserted for every individual and not predicated on the commissioning authority, the provider or, in the worst-case scenario, the institution, where the individual may have absolutely no choice and control.
On the barriers to the traditional PA model, as described by Adolf, we have been told by families that they may not wish to become employers. That is the first barrier. There may be a sense of a lack of social agency and confidence in order to become employers. Families often tell us that they wish to pursue their own careers and their own lives independent of the care and therefore that separation is helpful. There can often be some reluctance to managing budgets. If you take the things that are barriers, and you have an organisation such as ENABLE or one of the small Swedish organisations that Adolf talked about, you can support families to access all the benefits without necessarily having the downsides.
One really interesting thing in relation to the barriers has been the legislative environment. As you know, in Scotland the 2013 self-directed support Act has come into place. That has been very clear about the different options that individuals can access. What is unique about ENABLE is that, irrespective of which option you take as an individual or a family, you can still have the choice and control, the independent living that Adolf talked about so eloquently, but without some of the barriers—potentially that of being an employer. It is another route to offering families and individuals all that choice, control and freedom but in a much easier and less complex way for some individuals.
On your point about learning disability and perception, one reason we were so passionate about the PA model is because we saw it working particularly well in the independent living movement, for people with physical disabilities, but we often saw people with learning disabilities, mental health issues or acquired brain injuries being unable or unwilling to access the same level of optionality. Again, one thing it has done, as well as democratising the ability to access the PA model, is widen the number of people who use self-directed support. Does that answer all the questions?
Baroness Fraser of Craigmaddie: Yes, I am happy with that. That has been wonderful.
Q103 The Chair: Can I ask you a quick question on the back of that? Have you heard anything this afternoon, from our witnesses from Thurrock and Somerset on local area co-ordinators and so on, that you think could also be applied to make the take-up of direct payments and personal assistants easier? What have you learned that you did not know, as it were, which might be helpful for us to know?
Theresa Shearer: One very interesting thing from when you touched on local area co-ordination earlier is a sense of the ability to use local area co-ordination to reach a wider group of people who might not necessarily be thinking about the PA model or direct payments. That is useful. If I can give a slightly different view on that, though, one of the biggest benefits of local area co-ordination is the fact that it can often prevent people from going into statutory services and therefore requiring direct payments, so I would be considered and thoughtful about local area co-ordination, for example, being a route for that, because I think its strength is the opposite.
We talked about micro-provision. Again, I think there is a great place for it in certain elements and communities, but I have some concerns. One of the things that I hope I will have the opportunity to talk about as we go through the session is the landscape of social care provision from a macro, strategic perspective. Adolf talked about 1,000 providers for a population of 10 million. In Scotland, we have 1,000 providers for a population of five million. In the rest of the UK, you will be well aware that it is almost 18,000. There comes a point where you have to look at the infrastructure and the fabric of the social care market as almost a barrier in and of itself.
The Chair: Thank you. That was a very good answer.
Q104 The Lord Bishop of Carlisle: Theresa, what you have said has been absolutely fascinating. I shall take it a little further, because we are conscious of the fact that, in England, although we have a higher take-up of direct payments and the PA system than you do in Scotland—you talked about 11%, but here it is about 27% on average, I think—it is actually going down rather than up at the moment, and that is not just due to a lack of funding. One of the big problems seems to be recruiting, training and employing appropriate PAs—having enough people who want to do this work and who are good at doing it.
Are there any lessons from the way in which ENABLE has grown and developed so brilliantly that we could learn from in relation to those limitations on the workforce? The Chair just referred to what people have said before; I ask this especially in light of Nick Sinclair’s earlier comment about the danger of good ideas losing their essence—I hope I am quoting him correctly—when you just scale them up. This is really about workforce. What can we do about that?
Theresa Shearer: First, I apologise: I am speaking at a conference in Belfast today, so you may hear some noise in the background. It is a conference on employment for people with disabilities, so hopefully that is a positive.
Your question was about workforce. My background was in the private sector, in the recruitment, HR and outsourcing industry, so I came to the charity sector with workforce as a key conduit into organisational strategy and meeting outcomes for both people and companies. One of the things that we have been really keen to do at ENABLE Scotland is twofold. First, we run an internal, not-for-profit recruitment agency, which is best described as being digital, data driven, efficient and effective, and which works for all our customers—by that, I mean all the individuals we work for.
In the same way that a typical high-street recruitment agency might work for AstraZeneca and support the recruitment of individuals into the pharmaceutical industry, we have a very similar concept, but we work for the individual as our customer. So if I was to get a personal assistant model through ENABLE Scotland, this very efficient, very effective, very personalised recruitment agency would work to my demands and criteria, and I would ultimately have a say in who was part of my personal assistant team.
It is a way of upskilling, of doing things at scale. We provide 2.5 million hours of social care a year, but we do not describe our work in terms of hours of outputs; we talk about individual outcomes. We support over 1,000 people and, as you will have seen from the regulatory scores, that is at the highest level across our country. That is done by having that very focused, personalised, self-directed internal recruitment agency, which helps us to ensure that we meet the demand of those individuals who want to build their own PA teams.
So we have the PA model, and we have the ENABLE Recruits way of working, which is really helpful in workforce considerations. Beyond that, we overlay this with our “committed to care” interventions, which are about making sure that individuals are recruited for their values and experience but not necessarily their social care experience. I am interested in individuals from a range of backgrounds and geographies.
When we bring them into ENABLE Scotland and they are working with the individuals who have chosen them, we pay them more than the Scottish living wage—that is a huge part of it. We are one of the top organisations in terms of pay and rations in the social care sector in Scotland, and indeed the whole of the UK. So over one-third of our workforce is currently earning between £11 and £12 an hour. Compare that with the work done on in-work poverty a number of years ago by the Joseph Rowntree Foundation, which found that almost 20% of the social care workforce experience in-work poverty; we have come a huge way towards ensuring that that is not the case.
Our “committed to care” interventions, which help with the recruitment of this workforce, also include individual things that, at scale, have made a huge difference. For example, if an individual has been working in social care, has left and has come back, we make a £1,000 onboarding payment to them to incentivise those really good people who potentially left during Covid, having worked for precarious employers on zero-hours contracts—all those things that we know are wrong. We have taken a much more fair-work approach to this in order to bring people back.
I will give you one data point on this. In a normal recruitment cycle for a personal assistant, one in 20 get to the point where we feel that they demonstrate the values that might be chosen by someone we work for and serve. If we look at people who already have a level of educational attainment in social care, that goes up to a 75% success rate. Therefore, the workforce considerations become much more effective, dynamic and led by the individual in terms of time and place. Although it is not perfect, we potentially do not have some of the issues that some of the other major social care providers experience at this time.
So we have our PA model and our ENABLE Recruits model, and we overlay that with our committed to care interventions, paying significantly more than the average in the sector. We incentivise those people to come back into care, and we incentivise people, specifically young people, to come into it from other sectors, such as hospitality and retail. That has been part of our success in recent years.
The Lord Bishop of Carlisle: That is tremendously helpful, thank you. Getting the right qualities and then rewarding properly when you have them—
Theresa Shearer: Absolutely.
Q105 Baroness Goudie: I have enjoyed listening to you, Theresa, and I know a little about your work. What is the role of policymakers in driving and supporting the growth of the market to provide personal assistance? I feel quite strongly about this. What needs to change from the policymakers’ perspective to enable them to do this? I feel that this would be a new world for people—staying at home or being able to come out of it and not necessarily being trapped—if we could have carers who are qualified and supported by organisations like yours and others that we have heard from this afternoon.
Theresa Shearer: There are a number of things to mention from a policy perspective. It would be difficult to start talking about social care without talking about regulatory and policy influences and levers and the role of the regulator. One of the things that would be really positive would be much more timely interventions from the regulator at a policy level—not at an individual or regional level but at a legislative level. We have found—we demonstrated this pre Covid—that providers who were working with very marginal outcomes and marginal levels of performance really struggled throughout the pandemic. That was not a surprise to us at ENABLE Scotland, because if you are not working at the highest level, serving the people whom you work for, when things get difficult or times are tricky, things can become very difficult for people in the most precarious situations in our society. So I suggest a much more interventionist role from the regulator at the policy level when performance is not yet poor, because often regulators wait until performance is poor before there is an intervention.
The other thing that could be really useful—we had some experience of this with the Care Inspectorate in Scotland—is positive regulatory sandboxing, or having the confidence of the regulators at the policy level to work with providers to ensure that things like the PA model that we at ENABLE have demonstrated could be tried and tested in other places in a positive way.
We did this because we thought that it was the right thing to do. Our membership is absolutely committed to independent living, self-directed support and the role that they have in society as citizens. That is not the case for every social care provider. We have a positive regulatory carrot-and-stick approach, almost, where we particularly work with providers that are at a medium level of operational performance to ensure that they do not slip but move into excellence. I suggest a positive and proactive approach to regulatory sandboxing and allowing providers to try things differently, side by side with the regulator.
Secondly, we have to look at migration policy. I know that you have already heard about some of the impacts of this. It is not as huge an issue in Scotland as it is in the rest of the UK, but it is certainly significant. I would love to see a really positive framing of our migration policy, focused on supporting people to come to work in care and social care in our country—in the whole of the UK.
The third thing that would be very important from a policy perspective is some managing of the social care market in a proactive way. We have talked about the fragmentation and duplication, and I can give you one example: there are 169 social care providers offering support to people with learning disabilities in Scotland. If we could somehow remove some of that duplication and put some of the money, capacity and time into supporting the models that we know work, such as the PA model, we would have a much greater impact at a national level.
Finally, in terms of policy, it is very early days for the rest of the UK, but I am very confident about the establishment of a national care service as a way to drive up quality in social care, as a way of looking at prevention within social care and to get really strong government ministerial accountability for its implementation. We have often seen very difficult times, particularly during Covid, when some private sector providers and other providers potentially did not work so well in terms of scale and institutions. So I suggest a policy landscape where Ministers, regulators and commissioners are able to talk honestly about what did not work and why. That would take some convening, and I am not sure who the best people are to do that, but it has to happen.
Baroness Goudie: That was very helpful, especially your last couple of sentences. Someone really has to be honest about how we do this, if we really care about the sector and the future of people at home.
The Chair: Thank you, Theresa. That was a very strong answer, covering all those elements of policy and what needs to change. Throughout this session, there has been an emphasis on prevention—you talked about earlier intervention. A notional national care service must not be another bureaucratic intervention; it must actually represent and drive the innovation and transformational possibilities that we have heard about today. Although some of them are local and regional, they are extremely powerful, because no one has put up a single argument for why these things cannot happen in other areas of the country. That is the powerful lesson and message that we will take away from this. We are asking what works and why things do not work, and we want to be honest about why things are not working, without apportioning blame.
We have made progress this afternoon thanks to you and all the witnesses. We have had tremendous evidence—full of meat, optimism, conviction and tremendously hard work. From Thurrock to Somerset, Scotland and, of course, Sweden, this has been a wonderful afternoon for us. We are very grateful to you all.
