Item 2 is the future delivery of social security in Scotland in relation to disability, carers and those who are ill. We are using a round-table format for the discussions, which we hope will encourage interaction and debate among those who are with us today. If the witnesses want to ask any questions or make comments, or bring up any issue that comes to mind during the debate, they should by all means feel free to do so.
Discussions can sometimes get a bit heated if more than one person feels that they have something to say, but I ask you to speak one at a time to allow the official report to take down what is being said.
I welcome Simon Hodgson, director of Carers Scotland; Alan McGinley, policy and engagement manager, Arthritis Care Scotland; Richard Meade, head of policy and public affairs in Scotland for Marie Curie; Suzanne Munday, chief executive, Minority Ethnic Carers of People Project; Kayleigh Thorpe, campaigns and policy manager for Enable Scotland; Alan Weaver, manager of Moray employment support and training at Moray Council; and Lynn Williams, policy officer at the Scottish Council for Voluntary Organisations.
I will start with a general question. Should a social security system in Scotland for carers and those with disabilities and long-term illnesses mirror the existing system in the United Kingdom, or should it be fundamentally and completely different?
I am happy to start, convener. There are two parts to that question. Across the third sector we have been debating and looking at the kind of things that we could do with the new powers that are to be devolved.
First, there are things that we can learn from the system that work well. One example relates to the experience of those who previously received disability living allowance. In the process for DLA, there were fewer face-to-face assessments than there are following the transfer to employment and support allowance and personal independence payments. Aspects of the current system could be looked at, perhaps not to replicate them but to learn from them.
Secondly, we know—and the evidence that the committee has taken last week and previously from the third sector and elsewhere suggests—that people’s experiences of the current system more widely, aside from the point about DLA, are not good. One issue, which I know that Richard Meade from Marie Curie and others will talk about based on the experience of their client groups, is that there are massive delays in the transfer to PIP. People’s experience of the new system is not good.
The next stage of the Welfare Reform and Work Bill, which will lead to further cuts, is being discussed at Westminster today. There are aspects that we would definitely not want to replicate. SCVO and others believe that, regardless of the limitations of the Scotland Bill, we could do some things quite differently here, one of which would involve the ethos underpinning the system.
I can understand people not wanting cuts, but should the starting point of the ethos behind the way in which benefits are delivered be different from or the same as it is now?
There is a dissociation between the benefits that are affected by the welfare reforms and the experience of the social work departments that are working closely with clients in the community. Social workers carry out assessments and sort out support plans, and then welfare comes in separately. There is a case for trying to join the two together in some way.
Enable Scotland views the devolution of welfare benefits as a real opportunity to reframe and improve on various aspects of the welfare system. Certainly, there is an opportunity to reframe the narrative that is often used around welfare benefits. We often talk about the ethos and culture in the benefits delivery system, including the skill set of front-line staff who make assessments of benefit claimants. There is a real opportunity to reframe and to influence that ethos, culture and skill set.
I agree that there is an opportunity to take a more joined-up approach. It is important that we look at welfare within the whole spectrum of public services. We must take into account the fact that welfare will be part devolved and part reserved, which will increase complexities, so we need to consider how we mitigate that and ensure that people are properly supported throughout the process.
Do you envisage that reframing being done on a nil cost basis, or does there need to be additional investment in the benefits system?
I envisage that there would need to be initial investment, certainly in relation to the skill set and training, and how we would deliver a benefits system here in Scotland.
I am not talking about the structural costs of establishing a new system; I am asking whether, if we are reframing the system, you anticipate that additional investment would be needed to improve the benefits that are available. Alternatively, should there be nil cost?
Those are difficult questions to answer until we see the detail in the Scotland Bill clauses and what they allow us to do. However, there are certainly views on that among the third sector, and the Scottish Government has set out its views on potentially increasing particular benefits, such as the carers allowance, which would obviously require additional investment. I therefore think that the answer is mebbes aye, mebbes no—it really depends. I think that we would want to increase some of the benefits, given how low they are.
Given the unprecedented cuts that we are seeing, the challenge for the Scottish Government and future Scottish Parliaments will be in considering how much to mitigate some of the damage that has been done versus perhaps increasing benefits and changing the culture, ethos and nature of benefits in Scotland. At a time when public finances are particularly tight, do we invest more in trying to mitigate the damage or in trying to change and develop the system into something that we all want?
It is worth highlighting that, with the current system, not everybody who is entitled to benefits actually claims them. We all agree that, if somebody is entitled to benefits, they should get them. Even if we managed to improve the system and identify everybody who was entitled to benefits, that would probably require an increase in investment.
I am familiar to an extent with the process of encouraging people to claim, as I worked for many years as a welfare rights officer, but Governments tend to budget so that, whether or not the benefits are claimed, at least the potential is there. My question is more about whether you envisage a benefits system that takes some of the current principles and simply applies them to a new system in Scotland, or something completely different. As a society, should we be prepared to invest additional resources in that benefits system, notwithstanding that that will mean decisions about where the money comes from?
The whole assessment process has become huge. For example, recently, a client of the social work department had to have a medical, so a doctor travelled from Aberdeen to Dufftown—a distance of 70 miles—to sit for an hour and do a medical and then go back to Aberdeen. If somebody had rung up the social work department, we would have told them that the person should be eligible for a benefit.
On what basis would you have made that decision?
On the basis that we have already done a risk assessment, an assessment and a support plan for the person.
I do not know anything about the particular case, but was there a requirement to have a medical assessment for that benefit? Are you suggesting that, in a new system, in many cases we could almost subcontract the medical decisions to social work departments?
I think that the assessments could be looked at in a different way from what is happening at the moment. People who are on the ground in a local area know an awful lot of people and have done for an awful lot of years. Therefore, they know their abilities and their disabilities far better than someone who sits down with someone for an hour.
Absolutely. There is a frequent complaint about doctors who flit in and make fairly superficial judgments and assessments before they flit out again, leaving wreckage behind them. Are you suggesting that, for some benefits, we should be shifting decision making away from medical-based decisions to social work-based decisions?
I think that, with the integration of health and social care, what is required is a mixture of both.
I would like to follow up on that. This committee has heard on numerous occasions about constant assessment of folks whose illnesses are never going to improve. Even though they might be on a downward path, they are assessed and reassessed again and again. Do members of the panel think that folks who are in certain categories, such as those who are terminally ill or who have progressive illnesses, should come out of that system after they are initially assessed, so that they do not have to constantly go back and forth, which puts everybody under a huge amount of strain?
People who are terminally ill can get fast-tracked benefits for DLA, PIP and attendance allowance, but only if they are in receipt of a DS1500 form, which is generally signed by a general practitioner or a consultant.
We know from figures from the Department of Work and Pensions that 95 per cent of those forms are given to people with terminal cancer, but not every person who is terminally ill dies from cancer. Terminally ill people suffer from a range of conditions, such as motor neurone disease, dementia, chronic heart failure and chronic obstructive pulmonary disease, yet they will not necessarily get the fast track to those benefits and will often have to face a more rigorous process, which might not be appropriate for someone who is so ill.
We would certainly be in favour of looking again at how assessment processes are carried out, as well as the decision-making and evidence-gathering processes in relation to people with learning disabilities, who are particularly vulnerable to negative decisions that are made as a result of a process in which they have to communicate their needs and support requirements in a very medical setting. Our position is very much that people who know the person, such as their GP or their social worker, should be involved in that process, rather than there being a specific medical assessment.
On your initial question about whether further investment is required, I would say that benefits for people with disabilities are very much about facilitating their participation in society, and we would like that to become a reality. We would therefore be in favour of further investment in that area. However, there are opportunities for cost savings and for more cost-effective behaviours. Those involve medical assessments and a more joined-up approach to the welfare system in general. Of course there must be eligibility criteria but, in cases in which someone does not meet those criteria, are there other strategies and interventions that can be put in place? That involves having a more joined-up, multi-agency approach.
Another issue that is important in this regard is that of passported benefits, which often involve an assessment.
Before we move on to that subject, Clare Adamson has a supplementary question.
You talked about the fast-track for benefits for people with a terminal diagnosis. In our your say session last week, we took evidence that showed that that system is not working particularly well. Are there improvements that we could make in that area, too?
10:15
Definitely. The DS1500 form that people are assigned is a good proxy, but the fact that 95 per cent of people getting the form have cancer implies that it is not working for people with conditions other than cancer.
Generally, getting the form is meant to fast track people. I believe that under DLA and the attendance allowance it took eight days but at the moment, under PIP, it is taking two to three weeks. If you are, in theory, in your last six months of life and you are waiting up to nearly a month for some of those benefits, you are losing some really crucial time.
We should look at the system of how we fast track benefits for people who are terminally ill. Also, there is no fast-track system in place for people who are caring for somebody who is terminally ill. Whether we use the DS1500 form or something else, if somebody is caring for a person who has been identified as terminally ill, that carer should also get fast-track benefits.
Thank you.
My question is about passporting and assessment. It is often the case that folks who are assessed and in receipt of a benefit are not automatically passported for other benefits. With the devolution of further welfare powers, should we be looking at creating a system in which we do not have all those bureaucracies and where passporting without further assessment becomes a reality? I wonder what folks’ experiences are around that and whether they think that that is something that we should be striving towards.
Absolutely. Kayleigh Thorpe and Alan Weaver made a point about some of the complexities that families are facing. As a carer myself, I know exactly what that means. At the moment, with my husband, I am involved with something like 20 different professionals who deal with different parts of our lives. There have to be ways of cutting out some of that bureaucracy by looking at automatic passporting, for example. That will involve communication with the DWP because unpicking some of the bureaucracy is going to be incredibly complicated, as some benefits will be devolved and some will be reserved. How the benefits are linked will also be incredibly complicated, which brings us back to passporting.
The Child Poverty Action Group and others have done some work to begin to unpick some of those complexities. There has to be a way of getting some automatic eligibility or entitlement so that people do not have to constantly go through assessments when they are not getting any better and there is not going to be a magic cure overnight—for some people, their lives will not change. Ultimately, such entitlement would save costs and the savings could then be reinvested into the system in some way.
We would certainly be in favour of anything that removes the bureaucracy and complexities in the system. On passporting benefits, there is the concessionary bus travel scheme, which people become eligible for through PIP or through certain forms of DLA. That scheme is a massively important source of support for our members who have learning disabilities, but often they have told us that they find it quite difficult to get access to it. If access to that scheme was made part of their initial benefits claim—for example, if there was a question such as, “Would you also like a bus pass if you qualify for this benefit?”—that would remove so many issues.
Is it implicit in what has been said that more responsibility for decision-making should be shifted towards local social work services, as they are better placed to make those decisions than perhaps remote benefit bureaucracies?
We have to tread carefully with that idea. There are probably different views across the sector on it. I am not saying that people would be against it, but a lot of the people who claim DLA, PIP and carers allowance do not go anywhere near social work departments and do not use social care services. How would they be supported through that approach?
There is also an emerging concern among some third sector organisations that such an approach would result in some of those budgets being sucked into gaps in social care rather than being used for what they were intended for. For many people, DLA is a preventative benefit. They will use it to purchase things that they do not get support for, such as incontinence products, and they do not go anywhere near statutory services. There is an issue about how we support people who are entitled to the benefits and who use them in a way that keeps them together as a family and enables them to remain independent but who have no contact with other statutory services. There is a warning there, so we need to look at the issue carefully.
There is also a concern about the budgets for those benefits that serve a particular purpose being sucked into bigger budgets and disappearing. We have had experience of that happening. For example, money came from the UK Government for respite funding a few years back—Suzanne Munday will remember this. That money disappeared into local authority pots and was not spent on what it was intended to be spent on.
That is a legitimate concern. Many social work departments are already hard pressed and overstretched. That brings us back to Alan Weaver’s point about medical assessments and how local social work staff are often better placed in that regard.
Alan Weaver also mentioned integration. I was talking to social work staff in two different authorities at the weekend, and I am not sure that front-line professionals share the positive and rosy picture of the improvements and benefits that integration is bringing that more senior staff and indeed politicians might have. It is clear that there are tensions between people with a social work background and people with a health board background. It might well be that things are taking time to settle down, but we should not underestimate the cultural issues that exist.
I see that Simon Hodgson wants to come in.
I was thinking that the same issues will arise if we try to set up a parallel or different social welfare system in Scotland.
If the current, non-devolved benefits continue to be processed under the current approach and with the current attitude—which is almost one of trying not to spend the money if people can find a way not to do so—and if we create a more engaging, humane welfare system for the devolved benefits, we will potentially be asking the same people to run both systems.
That depends on how we decide to deliver the welfare system: if we ask DWP to take on responsibility for the devolved benefits, the same people will have to wear two hats. We would obviously prefer a potential model of doing things differently to rub off on the current approach that tries to find ways of not paying people by, for example, sanctioning them for random and ridiculous reasons.
We are de facto creating another level of complexity, in that someone might have to see two different people to get a holistic group of benefits, and the two systems might play off against each other. That is exactly the issue that integration of health and social care is trying to address in the long term.
I agree with the convener that integration is probably not working at the moment, because the cultures in social work and health are different in lots of ways—that issue was identified right at the start of the process. The aspiration is that a service user or carer need deal only with one person, and what is going on in the background—who is paying for the service, where the budgets are held and how services are organised—is not the individual’s problem, so they can say, “I’m just here to see you; it’s your job to sort out all that other stuff.”
We are now potentially creating a situation with welfare in which two different people do the same thing, with one playing off against the other. The approach seems to be going against the direction of travel.
I apologise for arriving at the committee a bit late this morning.
Simon Hodgson talked about the challenge of having two distinct systems if the system in Scotland has a different attitude. As you know, I convene the European and External Relations Committee and keep up to date with the social chapter. In a report that was published about four years ago—it is a wee bit out of date—the European Committee of Social Rights suggested that the UK Government’s current system does not comply with article 12 of the European Social Charter, on the right to social security.
With that in mind, and as we consider a future social security system for Scotland, which in my opinion should be human rights based, how do the witnesses feel about having a human rights-based system—one that is adequate and supportive—that has to rub along with or bump up against another system that is shifting away from a human rights-based approach in almost every respect?
Although the question seems simple, it is actually complicated, because every piece of legislation that the Scottish Parliament passes must comply with the European convention on human rights and the Human Rights Act 1998. There is a challenge in there for us as to how we formulate a new social security system. I am interested in hearing whether people think that the approach could work and whether there are worries.
We obviously have to deliver on those requirements, and we all aspire to do so. I think that the approach would be possible—Scotland has demonstrated in a lot of areas that it can do things differently. What you are probably really saying is that, as the whole sector has argued, if we are going to devolve welfare, we have to devolve the whole thing, because of all the issues that we have mentioned. All the work that we are now doing is about trying to unpick something that need not have happened. We would still have had a big job to do to come up with the human rights-based system that you describe, but at least it would have been within our power to do something about the situation. At the moment, we can only model and set up things that demonstrate that it is possible to do things humanely and fairly and in a way that meets all the human rights requirements. You are absolutely right that that should be fundamental.
I do not know what else to say. We have said it over and over again from the beginning, when we all responded to the Smith commission’s consultation. I do not think that anybody said that it would be a great idea to segment benefits.
Our answer is yes, the approach could work. We are all familiar with the amount of money that carers save the health service by virtue of the care that they provide, yet the benefits that they are entitled to are among the lowest, if not actually the lowest. There is a substantial body of research on the impact of caring on people’s ability to live ordinary lives. I am talking about issues such as fuel poverty and the research that shows that families are going without adequate nutrition because of the increased costs that are associated with caring and with having a disability or long-term condition. Ultimately, the welfare system has to be about alleviating poverty, and carers are among the most impoverished groups in society. That has to be the bottom line.
Of course we would like to see a human rights-based approach. If we have the opportunity to deliver that, that is what we should do. There is a risk of increasing complexity if some—but not all—benefits are devolved. We need to ensure that people are properly supported through the process. There has to be a well-funded advice sector and specialist provision. Support must be available to people to enable them to navigate the system.
Without a doubt, a human rights-based system has to be our starting point. There is agreement pretty much across the third sector that a rights-based approach is the right one. That does not necessarily mean that there have to be big changes; it can be about how we do things. For example, it might be about how we assess people and deal with issues such as benefit adequacy.
It is incredibly positive that the Scottish Parliament is based on human rights principles and that the Scotland Act 1998 drives that approach. However, are the devolution negotiations driven by rights-based approaches and concerns around adequacy, the right to social security and dignity? That is what is missing. Currently, the devolution process is about what is politically expedient, and it is driven by a political process. Our concern is about the operation of the joint ministerial welfare group and building work around the devolution process on the principles that have been mentioned. In what way are we being proactive rather than reactive? We ought to agree from the very beginning clear principles around basic rights, adequacy and poverty, and we want new powers to tackle those issues. Let us not wait until we have the powers; we should start building that process now.
We know that Scotland faces challenges in some key areas. One such area is gender inequality, which the committee did some great work on recently. By creating a new social security system, which is effectively what we are doing, we have a chance to try to tackle some of the issues from the outset. It would be a massive missed opportunity if we did not do that.
We all know the duties that we have on rights. However, there are also the commonsense aspects, which are sadly lacking from the current system. We have touched on the carers allowance. One of the things that frustrates me and a lot of carers is the fact that they can earn a maximum of only £110 a week before they lose the carers allowance. That is extremely annoying for families in which folk are able both to care and to work, for whom work is often their respite from providing care. Such anomalies make no sense. How should we tackle them?
10:30
I should start by saying that carers organisations do not think that work is respite.
Some folk do, though.
Some local authorities are trying to count that in the number of hours per week that they allow and have to fund to meet the Government target.
There are lots of anomalies in the carers allowance. What we should do with the devolved carers allowance has not been resolved. Our understanding from discussions that we have had with the DWP is that, although there are currently three provisos—that you have to be over 16, caring for 35 hours a week and not in gainful employment or full-time education—those are currently up for negotiation, in the sense that Scotland could redefine the criteria.
Some of the existing requirements have been taken out, such as the two-year residency test, which would stop somebody coming back from Australia to look after their elderly mother. The way in which the bill is written could well be misinterpreted, but if the carers allowance is effectively going to be scrapped in Scotland and the Scottish Government effectively given the opportunity to decide what to do here, you could start again.
All the options that would then be on the table would obviously come with potential cost implications, depending on how those issues were addressed. For example, you would need to negotiate increasing the threshold for working carers, increasing the amount of the carers allowance, or broadening or shortening the hours for which somebody needs to provide care in order to be eligible for carers allowance.
The principle of involving carers in how we reach the best solution will have to be dealt with. Depending on which group of carers you ask, you will get a different answer. For example, the day that you become a state pensioner, you lose your carers allowance, although nothing will have changed in your caring world. Similarly, the week that you earn more than £110, you will lose your benefits—although there are things that you can do to change some of that.
We have not nailed down exactly what the new benefit should look like, but we should bear in mind the principle that we want to establish the system as a human rights-based system that helps the people who are most in need. There are some really odd anomalies at the moment. If you are a retired chief constable on a state-funded pension of £80,000 a year, you are still eligible for carers allowance, because that pension does not count, but if you earn £125 a week doing 16 hours in a branch of Starbucks, you lose the allowance.
I want to make two points. First, I think that the human rights-based approach is absolutely the right one. We talk about person-centred care when we talk about health and social care, but rarely do we talk about person-centred welfare. We should really think about that, because it is part of the whole package of supporting people to live well.
My second point refers back to what was said about carers. Health, social care and welfare systems frequently fail carers, particularly those who are caring for someone at the end of life, yet carers are often among the most important parts of that package, if not the most important part. We know from research that the single most important factor in whether someone can be cared for at home and, ultimately, can die at home is whether they have a live-in carer. We need to look seriously at how our health, social care and welfare systems ensure that our carers are properly supported to carry out their role of caring for someone—often a loved one. When a terminally ill person dies, support for their carer often stops, and they can suddenly be left without carers allowance or other support. We need to ensure that we have appropriate support in place for carers after their caring role ends.
The focus on 35 hours is problematic and at odds with wider Government policy. We talk about the impact of caring on an individual, but that is not always tied to the number of hours that a carer delivers. Someone who delivers care for 35 hours a week—or even more—could have a fantastic support system. Someone else could be under that threshold but if they are a single carer they may be struggling with a whole range of other life factors. Under the 35-hour rule, that person would not be entitled to the carers allowance or the carer element of universal credit.
The other issue is that not all carers are actively involved in caring all the time, due to the nature of the long-term condition of the person they are supporting. Mental ill health is an example of an area where illnesses can be cyclical, with periods of ill health and periods of good health. The difficulty then comes from negotiating the welfare benefits systems, which causes the carer and the person with the mental health problem additional stresses.
On the carers allowance, we have discussed that the benefits system does not recognise the caring role of many carers. It should, of course, because their contribution offsets more costly health and social care interventions. We want the situation to be remedied, and we support the opening up of discussions on the issue. Our analysis of the Scotland Bill is that we will not have that flexibility. However, I hope that that is still open for negotiation.
I flag up the fact that, due to the intertwined nature of benefits in the system, the carers allowance has the potential to impact on the benefits of the disabled person who is cared for. They could lose a benefit if their carer receives carers allowance. That highlights the importance of support and advice when household income is being looked at. What is the best option: should the disabled person claim severe disability premium, or should the carer claim carers allowance? The consequential impacts of changes that we could make need to be borne in mind.
This evidence session is focusing on disability and carer benefits, but there is a link across your inquiry, so we would miss a trick if we looked at the benefits in isolation. From a carer’s perspective—I am sorry, but I am going to flip between my personal and professional hats—there are wider issues. For example, Richard Meade mentioned health and social integration, but how we will use the new employment powers is another issue. We need to recognise that the route back to employment for some carers could be a long and difficult one. How can we effectively target groups that face barriers, such as lone parents and carers? How can we use that suite of powers more effectively to tackle the issues that some groups face? I am thinking in particular of the groups that Enable supports—people with learning disabilities. There are massive social care issues that have nothing to do with the benefits system per se, but which are about devolved powers.
In our submission, we said that we must look at how devolution is working. The way in which this all links with some of the conversations around the fairer Scotland and healthier Scotland debates is incredibly important. In your inquiry, you are beginning to look at what we could do with benefits, but there are wider issues around how those link in with other services, and how those services can create dependency on benefits. In addition, when services are removed, people have to give up their work to provide care. There is a whole host of ways that we can join the conversations together more effectively and look at wider support packages for groups such as carers.
Should there be greater flexibility in the benefits system for those in work who have a disability or are ill or who are carers? Should they be allowed—indeed, encouraged—to take on part-time work? Is there a barrier to that? I do not want to get into the debate about whether work is respite, but some people like to work. Some people feel that they could work a few hours, as it would help them to socialise and to feel more confident; it would also help them financially. However, there seem to be huge barriers and disincentives to people taking on any work, because doing so means that their benefits are clobbered pretty early on. Should any new social security system in Scotland allow people a greater opportunity to take on part-time work across the board?
Could there be a link involving universal credit? People will have their universal credit reduced as they slowly increase their hours and their income. Instead of just stopping carers allowance at £110, it could be phased out slowly as the person increases their income until it is a full-time income.
But it is not just about doing that until people get a full-time income. It is about recognising that, notwithstanding the point that the person is working, they may have an illness or a disability that justifies the need for a benefit of some sort, because they may have additional expenses associated with that. For example, people could work for years yet still be entitled to mobility allowance, because the system recognises the need to help people with mobility problems.
I am posing the question rather than suggesting any particular remedy, but should a new system provide that, whether a person is a carer or has a disability or an illness, if they want to take on some work, that should not necessarily impact on a benefit that is designed to help with their specific need? Alternatively, in some cases should the benefit be linked to income—that is, the more that the person earns, the less need there is for a benefit?
We need to look at providing flexibility. There have to be ways in which we could do things better.
For some people with disabilities or ill health, part-time work may be possible, but how can we prevent them from losing out financially from that work? Inter-governmental working will be important, because there are clear links with universal credit and how that operates.
If you look at the number of hours that carers can work, the work allowance and carers allowance, you can see that there are ways of providing flexibility that allow people to continue working in some way.
I go back to my original point that sometimes it is not the benefits system but wider systems, such as social care and health, that stop people working. Carers have to balance 20 different professionals who do not listen to what they are saying; at the same time, they have to balance work and caring for someone.
There is definitely scope to look at how benefits operate so that people can be given increased flexibility to allow them to balance work with doing other things, or to encourage them to take up work where they can.
What is wrong with the current system is that it takes a work-first approach, which is aimed at getting people into a job—any job, irrespective of whether it is the right job for them or whether they will be better off financially. Some in the third sector argue against that approach. For some carers, the nature of the disability of the person they are caring for may mean that work will never be an option, but that should not consign those carers to poverty. Carers must be equally valued as members of society and supported to have a decent standard of living. Sadly, that is not the case just now.
The approach in “Scotland’s Economic Strategy” is moving towards that flexibility, which is welcome. However, we have a journey ahead of us in recognising that participation is not just about work.
The convener made the point that some people get other benefits from work, and we agree that carers are entitled to a life outside caring—that could be work and the advantages associated with it, or it could be a social life.
I agree with Lynn Williams that, fundamentally, the approach should be one of trying to address the problem, which we are totally aware of, of carers ending up in poverty because they have taken on caring responsibilities. Lots of people make choices too quickly—they give up work without being given advice on options or alternatives.
Lynn Williams made the point about the availability of services that suit the carer and fit in with when they want to work or have a social life and maintain relationships with family and friends. That is really important.
Given that three in five adults in Scotland will be a carer at some point in their life, the fundamental question of what a person is entitled to is not one that is just for hard-core, heavy-end carers who have taken on a massive commitment in looking after severely disabled children or a partner who has a severe illness or injury.
A broad approach needs to be taken to stop people ending up in poverty. Right across the piece, our data shows that people often end up in poverty at a key point of their working life because of their age. Women are disproportionally affected, since more women give up work to look after not just their own parents but their partner’s parents. Women can end up with less income and a reduced pension, which has a knock-on effect for the rest of their lives.
We need to address that and to do the maths on it: we need early intervention, support at an earlier stage and sensible alternatives so that employers can support carers, as some already do.
10:45In our submission, we make some suggestions about how employers do not need to wait to change their behaviours until Scotland has the power to legislate. They could offer care leave—sabbaticals and so on—or support for people at the end of life. It would not be the end of the road for people who otherwise might have to give up work to cope with something serious in their lives.
I reiterate the point made by Simon Hodgson and Lynn Williams about not looking at things in isolation. There is a lot more that employers can do to support working carers. There is a lot of evidence on the benefits of having working carers in the workforce.
However, I offer a note of caution. One size does not fit all. In the communities that I work with, employment in small and medium-sized enterprises is the predominant pattern, with a particular reliance in minority ethnic communities on self-employment. Our work with those communities demonstrates that it is very difficult for employers to respond to carers in the workforce because the workforce is often two or three people. We need to look at that as well.
We absolutely should focus on working carers. I do quite a bit of work with South Lanarkshire Carers Network. There is also a wee group called Covey Befriending in Hamilton, which befriends a lot of young carers. I want to read a quote from a 19-year-old woman. She said:
“Being a young carer, there is no time to have a childhood. It is like living in ‘Dog Years’. You grow up much quicker than everyone else your own age. I feel as if my life has been much longer than it actually has. I have brought up a family from the age of 8.”
Caring has an impact on young people as well. Although it is absolutely right to focus on people of working age, and to talk about benefits and working-age benefits, there is a group of people—the young carers—who will come into the benefits system. We have to make sure that they are protected, supported and given the things that they need so that they can have a bit of a childhood, study and get on at school and do the things that other kids do; we have to support them with their caring responsibilities, too. What ideas does the panel have about how, if we are developing a benefits system in Scotland, we can develop that part of it to be better? Transition periods are the biggest pitfall; they are where people can fall out of the system.
That is a really valid point. Many of us will have witnessed the magnificent work that young carers do, without complaint. It becomes a part of their life; they take it for granted. They try to fit their schoolwork around their caring responsibilities; they try to study at home. As young people, they are developing themselves and they need to socialise but they do not get the opportunities.
If they were older they might—depending on circumstances—qualify for some financial assistance. However, as young carers they do not qualify. Christina McKelvie is right to ask whether there is something that we can do about that.
I totally agree with everything that you said, but another issue, which was raised in our session last week, is that the carers allowance stops at retirement age. A lot people who are doing quite heavy-duty caring are retired. I assume that not having the extra support puts extra pressure on their health. The two opposite ends of the age range are both groups that do not get support that they probably deserve.
Something that could be done would be to look at how to extend the carers allowance to full-time students—to change the 21-hour rule. Young carers—adults up to 25 years plus—cannot take up education for more than 21 hours or they lose access to benefits. We could look at how to extend carers allowance that way. I think that it was costed at somewhere around £40 million—perhaps Simon Hodgson knows, or Fiona Collie from Carers Scotland. That sounds like a lot of money, but in the scheme of things it is not a huge amount.
Carers lose carers allowance when they become pensionable. That potentially means that women, who tend to care more, are in poverty for much longer because of the increase in pension age. Women are older before they become pensionable and they are on carers allowance for a much longer period, so they are in poverty for longer as well. Sadly, we do not have control of that through the Smith commission, but there are things that we can do around that.
The whole transition, which Christina McKelvie mentioned, is incredibly important for parents. As a carer, I know that the transition period when your young person leaves school and you have to reapply for DLA is a whole new stressful period. When your child is not going to change and their needs are not going to change, why do you suddenly have to reapply for a benefit? It puts families through additional stress when they are already dealing with it. You could look at changes such as not having to reapply for benefits, which might not cost a huge amount but would make a big difference in people’s lives.
Kayleigh Thorpe, did you want to come in earlier?
On an earlier point about the links between welfare and work, I wanted to emphasise that disability benefits should not be viewed as an income-replacement benefit that is given on the basis that someone does not have a job. Disability benefits are very much about the costs that are associated with disability, and they are an essential part of facilitating participation and independence, regardless of whether the person has a job. Many people with learning disabilities are crying out for work and to be engaged in meaningful activities, but they are subject to extremely high rates of unemployment.
I do not think that benefits should ever be a barrier to working, either. That is an important point.
Kayleigh Thorpe has set this up nicely. One thing that concerns me is the fact that we are going to get a number of powers over a number of benefits, but there is still a disjoint in that the UK Government will control other aspects. A prime example is working benefits compared to disability benefits. It is going to be difficult to make sure that there is a complete connection and that folks are getting what they are entitled to—and that we do not still have the split that we have now—unless there is complete and utter co-operation, which there has not been in certain areas before.
What do the panellists think about the limited powers that we are getting in the Scotland Bill as it stands? What pitfalls will there be if we do not get any other powers? If the panellists had the choice of bringing more powers to Scotland, what would those be and for what reasons?
I am happy to answer. Some organisations in the third sector will find it difficult because they are UK-wide organisations, so they have to traverse that boundary, if you like. When we did our work for the Smith commission, we worked with many organisations that gradually felt that full devolution of welfare short of pensions—there was a reason for that—was the way to go. Many people in the sector still strongly feel that we could be creating more complexities.
Aside from that, I think that the sector is very ambitious for whatever limited powers we have. The clauses in the Scotland Bill must be as wide as possible. At the moment, my understanding is that the carers allowance is being looked at and there is potential for the UK Government to change the three sub-clauses, which would be of benefit, but the disability definition remains an issue. For employment powers, I think that there is an understanding that we might just remove some of the exceptions around that.
With those powers, we are talking about roughly £2.5 billion-worth of benefits, which is a lot but in the wider system is not a massive amount. We would not have control over employment law and we would not have control over some of the equality issues. The complexities that the sector has identified have to do with those areas that remain reserved and devolved, such as universal credit. There is the fact that you cannot get a carers element and a disability element in universal credit. There are things in the system that will clash with the benefits that are coming to Scotland. There is a lot that has to be unpicked.
My question for the committee, and for the committee to question ministers on, is this: what are the ministers doing now to prepare for that? How are they using the expertise of the people in Enable, Marie Curie, CPAG and other organisations who know absolutely how the system works and can foresee those complexities? How are they using that expertise to plan ahead?
Of course we want to see more welfare powers come to Scotland because, to be frank, the route that is being travelled is disturbing for many in the sector. I mentioned earlier that the UK Government will today be voting in the Welfare Reform and Work Bill, which will take a further £12 billion out of benefits, much of which goes to working families. That cannot go on. We are seeing the fledgling beginnings of a new system, which is important. We have a starting point here for Scotland to take its own route, and Scotland absolutely has to do things differently. There is a risk that Scotland will be conservative—with a small c—and not do things differently, but we have to be ambitious with the limited powers that we have and make them work for the greater good.
I take on board your plea for us to question ministers—I am sure that we will do that.
Are there any lessons that we can learn from the Irish experience? That has been a very difficult situation. I have been trying to look at some of it and it seems quite complicated. Perhaps you can enlighten us a wee bit as to where we should look—where the potential pitfalls are, what lessons have been learned and how we can avoid those mistakes.
We have been working with our sister organisation in Northern Ireland and we have been doing some training with it. Technically there is devolution of benefits in Northern Ireland, but in reality, with the parity principle, that is not the case. The Welfare Reform Bill has not yet been passed in Northern Ireland and in fact, given what is happening there, the Northern Ireland Assembly may well fall.
What Northern Ireland has that we did not have is time to prepare for the welfare cuts. Before the collapse of the Executive it was able to negotiate further flexibilities in universal credit. My question to ministers would be about the joint ministerial working group. As well as negotiating the devolution of new powers, how are we using that avenue to deal with the consistent issues that we know exist with the current system, such as PIP delays and universal credit issues? How are we using the ministerial groups that exist to tackle the issues with the UK system, which will continue regardless of whether Scotland has additional powers?
Does anyone who has not contributed want to come in?
I should probably say something, but I am just two weeks into the job so I am still trying to discover what arthritis is.
You stumped me with your first question, to be honest, in looking at it so universally. From what our members are telling us, the issues that they need to have resolved are the simple ones. For example, when they have been reassessed, they are no longer getting benefits, and when they are simply trying to get benefits, they are not getting them. Those are the fundamental issues that our members would want to have resolved as part of any outcomes from this.
We can talk about a human rights approach and the new ethos and whether we attach anything to the new systems of integration. However, at the end of the day, for the ordinary person with a fluctuating condition such as arthritis—I think that Suzanne Munday talked about that point earlier in relation to mental health—the fundamental issues of their daily lives are what need to be addressed, whether they are in work or out of work and whatever the solutions are.
Whether or not we can find a universal statement and a sense of direction, there are simple things that need to be addressed below that level. In some ways, that is just about a recognition of the realities of conditions and how they impact on people’s ability to get through a day, get into a job, stay in a job and so on.
It would be slightly worrying if we ended up having two definitions of a carer. One definition is set out for the carers allowance and one is set out in the Carers (Scotland) Bill that is currently going through this Parliament. We need to come to one agreed definition that is in use for Scotland.
On employment, there is talk of getting control of the work choice work programme. There is an opportunity to change how that is organised so that it can support a lot more people with disabilities and a lot of carers. We need to have a dialogue about how that can be worked into the whole approach.
I think that it was the SCVO that commented about regulated social work and other payments. There is a lot of debate at the moment about increased use of food banks as well as concerns about the availability of support and social security payments now.
I remember that, in years gone by, when I was a welfare rights officer, people on supplementary benefit had access to weekly additional payments and single payments. At that time, quite extensive section 10 and section 12 payments could be made by social work departments under the Social Work (Scotland) Act 1968, but social work budgets are now under pressure.
11:00I hope that we will be able to design a system that minimises the requirement for people to turn to food banks, but there will always be emergencies and periods of crisis in people’s lives. Should we be looking to enhance the powers of social work departments and give them the additional resources that they would require to make increased payments to families that are experiencing difficulties, rather than have those families turning to food banks? That would require assessments of people’s needs to be made by social work departments and it would not be a replacement for the benefits system but would work alongside the benefits system. Is that something that we should formalise?
I want to raise a related point. Our briefing points out one of the interesting contradictions in the evidence about how the new benefits are to be delivered. The Convention of Scottish Local Authorities is obviously arguing that local authorities should deliver the benefits and is pointing to the experience of working with the Scottish Government on such things as the welfare fund, and local authorities already deliver a lot of benefits. However, there is strong evidence from third sector groups such as CPAG, Inclusion Scotland and Parkinson’s UK, which do not want local authorities to be delivering the new benefits. The term postcode lottery is used, and that is something that all of us in this Parliament are familiar with.
You have talked about social work departments, convener. I wonder who the panel members feel should be delivering the new benefits.
There are probably three different aspects. The one that I mentioned is a separate issue to do with meeting people’s need in emergencies and one-off situations. However, the point that Joan McAlpine is making is about delivering benefits, and there would be the danger of a postcode lottery if local authorities had the power and authority to determine benefits as well as simply deliver them. Should local authorities have the power to make the decisions and the power to deliver the benefits? Let us discuss that first and then come back to the question that I raised.
There are a number of issues. Joan McAlpine has rightly picked up some of the concerns that the sector has about local delivery, which is partly down to our experience of how things are operating in social care and how the Scottish welfare fund is operating. Although the Scottish Government has protected the welfare fund, which is to be welcomed, there is a postcode lottery in how it is operating. People in different areas—and in some cases, even people in the same areas—do not always have access to the fund. I come back to the convener’s point about different approaches to crisis support. We have not yet ironed out how we balance crisis payments with the welfare fund.
Could we come back to the crisis point later and stick with the point that Joan McAlpine raised? In a sense, it comes back to the suggestion that Alan Weaver made earlier that it was farcical for a doctor to travel an inordinate distance to do an assessment on a family or individual whom that doctor did not know when the local social work department would have been in a position to give a more informed opinion. If local social work agencies are not going to be given the power to make those decisions, it begs the question of who would be making them—a stand-alone agency or authority, perhaps? In Alan Weaver’s suggested case, it could be a local social worker.
I do not have an answer to that question. It is something that needs to be considered and a process that needs to be informed by people who are going to use the service.
In our submission we pointed to the Scottish independent living fund as an example of how benefits have been devolved and a body established to manage them. We are not saying that that is the right approach, but we certainly supported it in that context. We liked the model that was adopted, whereby a project board was established that involved disabled people in the process. We can look at such models and learn from them.
On the assessment process at local authority level, I think that I said that medical assessments are not necessarily the right model. In some cases the social work department will be the right place to go to gather evidence. However, in our experience only 35 per cent of people who have a learning disability qualify for a social care support package, so a lot of people do not have day-to-day interaction with their social work department. For example, on a smaller scale, a requirement of the national concessionary travel scheme is a mental health social work officer’s signature to confirm that a person has a learning disability, and we found that many people could not get that signature, because they did not have day-to-day interaction with social work.
There should be a person-centred approach to assessments. Who knows the person well and can answer questions about their support needs? It might be their support provider, their support worker or their GP. It is about the evidence-gathering process, rather than having the local authority do the assessment.
But someone has to make the decision. Who decides to award the benefit? If it is not the social work department, is it the GP, the support worker or the carer? If so, we would need to set up a bureaucracy to facilitate payment. Would we set up a department of social security to manage the whole process, which would be separate from social work departments? We can think that a GP might be better placed to assess the person and might have a better relationship with them than the social work department has, but would GPs become the people who make decisions about benefit awards? Those are the challenges that we need to consider.
Your point takes us back to the point about how all this fits into the debate about having a fairer, healthier Scotland. We are talking about reforming and refreshing social care and health, and we are having a strategic debate about the future of health and care in Scotland. Where does the debate about social security fit into that debate? That is the question that we should be asking.
We have been talking about the role of professionals, whether they are social workers, GPs or third sector providers—Alzheimer Scotland said in its submission that it had been approached by benefits decision makers—in gathering evidence for benefit claims. How do we connect all those debates? A lot of stuff is happening that means that decisions are being kicked into the long grass until after next year’s election. The wider debate about involving people with disabilities and carers is part of the issue. We must not rush into things. Some people have been talking about 2017-18; we must take time to get things right.
I understand that, and I understand the need to put everything in the context of the fairer Scotland debate. However, at some point we will need to consider how the benefits system will be managed, what the processes will be and who will be responsible. If there is an antipathy towards using local authorities or a reluctance to use them, because people feel that they do not have good relationships with social work departments, are we talking about setting up a Government agency? Someone will need to take responsibility for managing the overall budget and ensuring that claims are processed and paid.
The witnesses have referred to social work departments a number of times. At last week’s your say evidence session, my group took the view that people such as occupational therapists are probably best placed to assess what people can do. When someone is being discharged from hospital, for example, an occupational therapist is there to support them, not to judge them. My group thought that that was the kind of approach that we should be taking, which of course fits with the integration of health and social care.
It is important to air some of the written evidence during oral evidence sessions. CPAG points to the experience of England’s local welfare assistance scheme as being a bit of a disaster for disabled people. Inclusion Scotland’s submission states:
“Virtually all of the disabled people we have consulted are absolutely firm on desiring nationally administered disability benefits.”
It describes a locally administered system as a return to the “parish poor law”.
It is important that we tackle these issues head on. How the delivery is structured and how things are done will be the big challenge for us all. There is no getting away from the fact that local authorities have a lot of experience of delivering benefits, which is why the Scottish Government works with them, but clearly there are very strong feelings out there.
Yes, and the implication of what Joan McAlpine is saying is that we would have a national social security agency, notwithstanding the fact that local people might be doing the assessments. Those are fundamental principles that we will need to face up to.
The key point for me is that we have to wait to see exactly what will be devolved so that we create the right integration, taking into account what we are responsible for, and so that we can see where there might be difficulties because we do not have control over certain areas.
We have to take on board the evidence that we have been given, but we also need to look at how certain things are done elsewhere. Denmark, for example, has a national social security system, but it is administered mainly by local authorities, which make judgments about social work delivery models based on their knowledge of folks’ income from social security. That creates a package for folks that is probably much better than how we do it at this moment in time. What do our witnesses think about the need to look at other models? We are still a little bit in the dark here about exactly what powers we are going to get. I know that some folk around the table have looked at delivery models elsewhere. Do they think that something along the lines of the Danish model would be practical here?
I can put my expert working group on welfare hat on to answer that. You have to look at models elsewhere, but Denmark has a whole culture, system and history that we do not have in Scotland: better jobs, higher taxation and a better-funded system. You can learn lessons and find good examples from abroad, but Scotland is effectively starting from scratch. Local authorities are involved in the delivery of some elements, such as the administration of housing benefit. It goes back to how those things are all interconnected and whether devolved services are ready for that kind of responsibility.
Personally, I am not necessarily against local authorities delivering such services. However, knowing how things work just now, it would probably give me the fear. My individual experience of how social care operates is that it is incredibly bureaucratic and does not work around the person. If local authorities suddenly started operating benefit systems in the same way, that would worry me. However, I can see where the interdependencies and links would be and how things might work better if there was a national framework.
There has to be a wider debate about what Scotland wants. The expert working group on welfare proposed a consortium, which began to thrash out some of the issues. It is part of the public debate that is going on just now through the fairer Scotland consultation. There needs to be a wider national debate. That is the point that we made about the Scotland Bill. Some of the amendments sought to automatically devolve things to local authority level without a national debate about what Scotland wants. There needs to be a national debate about whether the system is national or local and, if it is local, how we should reshape local authorities to make them deliver it more effectively. What do claimants themselves want to see from all this? That is kind of missing just now. There is a lot of activity around this, but those who are part of the system still feel very isolated from that conversation.
I will bring Christina McKelvie and Suzanne Munday in in a moment. Lynn, you mentioned two concerns about social work. You have talked about bureaucracy and about how, with the devolution of certain budgets to social work, that money kind of disappeared as it was not used for the purposes for which it was intended.
Given those concerns about budgets and bureaucracy, how can we establish an alternative system that is national and not predicated on local agencies such as social work but that does not introduce the bureaucracy that you have talked about and, indeed, the remoteness?
I know that the system has changed, but one of the problems that I used to find years ago was that the social security people were more remote and bureaucratic; they were in an office and things were done by phone. They were hidden away, whereas social work departments were more out in the community. How do we establish an alternative system that does not have the problems that you have identified?
11:15
The short answer is that I have no idea. We are debating that key question about how we try not to have the bureaucracy that we have now. I am kind of a fence sitter on that. I can see that local authorities could deliver the system, and I can see why people want a national agency, which comes with the risk of remoteness. There needs to be a much bigger debate about what the system will look like and the costs of setting it up, and whether we have a national agency or take the local approach.
It would be interesting to know what local authority colleagues think. I know that COSLA and others have been lobbying hard to have control of benefits and I can see the sense in that. However, the Scottish welfare fund is a small but good example of a national system that is delivered through local authorities, and a whole set of bureaucracies has developed around that. That was not the intention, but it has happened. Families are put off by that. Therefore, our record so far is not that great, and my worry is that we will go down a similar route.
The evidence that we have heard today and elsewhere tells me that families mainly worry about constantly having to undergo assessments, fill in forms and deal with bureaucracy and professionals who, frankly, have no understanding of what life is like. Some of that is devolved and some is reserved. Some is to do with benefits and some is not. How do we cut through all that? Sadly, I do not have an answer. As a carer, my life involves constantly fighting services that do not understand my life or my husband’s life. How can we cut through that bureaucracy and have one person who navigates someone through the system?
I remember being at a session with carers during the work of the expert group. They consistently talked about the need to have one professional to get people through the system. I do not know how we can do that, but we need someone who can navigate and act as a spoke in a wheel that brings people in, helps with filling in the forms and pulls in the right support. It is the idea of a one-stop shop. We need a system in which someone is the guiding point who can take people through the whole system.
Your comments about bureaucracy are not reserved just to the Westminster system, as there are clearly problems at local level, too. Therefore, whatever we do in Scotland has the potential to create the same bureaucratic impasse.
I want to back up that point about the role of a key worker. Putting my social worker head back on, I worked in learning disabilities where everybody had a key worker. At the committee’s your say session last week, everybody who was at my table wanted to have one person that they could go to for help instead of having to tell their story over and over again.
In that context and the context of the discussion that we have had about bureaucracy, I have a question about underclaiming and the process of automatic referral. I will tell a wee story. A few weeks ago, a woman came to my surgery. She is in her mid-30s and has worked with a local authority for 16 years in a caring role. She has a serious condition that requires major surgery but, because of her age, she is thought to be too young to get it. Her life is severely limited and she has run out of pay as she has been off work for more than a year. I had to refer her to her local authority’s advice project to claim her benefits because the local authority did not do that for her. One would think that general absence management procedures would have meant that she would have been told that she was coming up to the point at which she would be without pay and what she was entitled to from that point. It is that type of joined-upness that some people need.
The situation is not as bad as it used to be, but people still turn up at my surgery with no idea of what they are entitled to. They have had access to professionals across the board but none of those professionals has told them and they have been left in limbo. They come to me saying that they have no money and they do not know how to get a referral to a food bank, or that they have no heating. I ask them whether they are on DLA or other benefits and they say, “What’s that?”
That is the type of person who is most vulnerable and who falls out of the system. They are who we need to protect. That articulate young woman had worked in a local authority for 16 years but I had to refer her to her own local authority’s money advice project because nobody had told her about it.
It is worth pointing out that the DWP’s handling of those issues is not static. It is moving to a single account for people—I cannot remember its exact name—so that they can go online and see the whole picture of their benefits, if they have access to the internet. I do not know workable that is. We also know, from the universal credit visit that we made, that universal credit has moved to central call centre support. If we are talking about universal credit being centred around the claimants and the right support being provided, we need to consider where those support centres are. People on universal credit can no longer go to a jobcentre and get the advice that they need from the counter staff because the counter staff do not have access to the data any more. Changes are already happening, and issues such as data sharing will have to be in the mix for consultation.
The key issue is that people must have confidence in whatever system we go with. I do not think that it is overstating the case to say that there is a crisis of confidence in local authorities and in social work, in particular. We have the experience of self-directed support to draw on. I do not want to rehash old ground, but important lessons can be learned from that experience. Practitioners who knew the people were making informed decisions but, as those decisions went up the chain, we saw cut on cut to their packages of care. The carers with whom we work fear that, if local authorities are responsible for deciding whether people are entitled to benefits and what level of benefits they are entitled to, they will weigh up those entitlements against other spending decisions. There is a real fear of that in communities.
Does that imply that an alternative model that was not local authority-based—it could be a national agency—would not have the same constraints or have to worry about the costs and would, therefore, not make the same decisions?
I veer more towards having a national agency. However, it must be part of a national debate that puts disabled people and carers fully at the centre. We have talked about various national frameworks. As part of the work to support the Carers (Scotland) Bill, the national carer organisations undertook a huge consultation with carers, and the overwhelming preference was for a national framework for entitlement to carer support services, because people were worried about local discretion working against them. It does not always work for them, as is shown by the postcode lottery that we talk about.
Yet, notwithstanding the fact that political decisions are being made about restricting benefits, the current national system is criticised for its bureaucracy. Alan Weaver gave one example of that, but there are numerous other examples. If we had a Scottish national system, unless the payments in cash that it could provide were unlimited—if it had to work within a budget—surely, the senior managers would start to impose the same bureaucratic rules to ensure that they lived within their budget, as social work departments are doing. What would be your preferred solution? Would it be a national system of uncapped payments?
My bottom line is that, if someone has an evidence-based entitlement to a benefit, they are entitled to that benefit.
However, that applies just now. I mentioned the example that Alan Weaver gave, but we do not have just that one example. We have had numerous examples. I dealt with a case last week for a constituent who had to go through a hard-nosed and bureaucratic medical assessment in Glasgow. In his opinion, it appeared that the doctor was there as part of the exercise to stop him getting benefits rather than as an objective contributor to the process. I will leave that hanging for now.
I want to pick up on what was said about what the system looks like and which body delivers it. I do not have an answer, as I said, but whoever it is, the bureaucracies and complexities can be removed if we look at the skill sets of the people who are making the decisions, managing the funds and so on. They need to have the skill set to be able to support people to communicate their support needs, and also the skill set to recognise where people need more support. It is really about the ethos that we embed in the system.
As I mentioned, there are eligibility criteria. If people do not meet them, they should be referred to other places where there can be other interventions and they can get other support. For example, if we look at PIP, people might pick up two points for not being able to cook a meal, but they might not meet the required eight points. It should not be a case of saying, “Computer says no.” In that situation, people should be saying, “Who can we make a referral to in order to meet this person’s support needs?” Whoever is delivering the system and whichever body or model we choose, it is important that that skill set and that ethos are embedded in the system.
I also want to pick up on Christina McKelvie’s point about having a key worker and about the risk of underclaiming. I think that a lot of the culture is around mistrust and people getting benefits that they are not entitled to, but our experience is that the risk is really around people not getting what they are entitled to. There is evidence across the sector around that. Enable has a welfare rights service and we have achieved annual gains of more than £1 million for people with learning disabilities and their families. That is made up of benefits that people were entitled to but which they were not getting.
People need to be supported to navigate whatever system or model we choose, and that needs to be embedded within the system.
I want to stick with that for a moment. It goes back to what Suzanne Munday said. If I hark back to my experience, I was part of a welfare rights team—Joan McAlpine might remember some of this from when she was a journalist—that was part of a process of encouraging claims for invalidity benefit, and the Daily Record ran a high-profile campaign to assist. As a result of that work, Strathclyde Regional Council, with the support of the Daily Record, was able to hugely increase the number of people on invalidity benefit. Indeed, it was mentioned in the House of Commons, as it was driving the Government at the time to distraction because of the costs that were involved.
Someone mentioned earlier—I think that it was Joan McAlpine—that occupational therapists could make the assessments and the decisions. If responsibility for benefits is devolved, the Scottish Government will ultimately be responsible for meeting the costs of the payment of the benefits. Enlightened occupational therapists across the country are making the point that Kayleigh Thorpe made about points and saying, “We think that this justifies the payment of a range of benefits.” Occupational therapists might do the humane thing and say, “Go for it”, but they are not responsible for managing the budgets. Suddenly, the overall bill will land on the desk of whichever Scottish Government minister is responsible, and they will have a hairy canary because of the budget. How do we manage that process?
My point was not that professionals such as occupational therapists should make the assessments. I was saying that someone who knows the person should provide evidence on their needs, and not a medical professional who has just shown up for the day, who does not know the person.
It is about the model of choice, whether it is a department within a local authority or an independent body similar to other models that I mentioned, such as the Scottish independent living fund. Someone needs to make the decisions about assessment. I was not saying that the person who knows the person best should do that; I was saying that they should be trusted to provide the evidence that they have those needs, rather than that being done only by a medical professional who is appointed and contracted by the assessment body.
11:30
We must remember that the assessment for benefits at the moment has been subcontracted out to private firms. There is a definite difference between the assessment and the delivery. I think that the assessment part, rather than all the rest of it, will be devolved first. We need to think about that part of it because, at the moment, a private company has the contract. What are we going to do with it?
To return to fundamentals and what Lynn Williams said about framing the discussion, it is tempting to try to lock down possible delivery mechanisms, which is a big task, but the debate needs to be about the purpose of the system. The fairer Scotland discussion is, in essence, about inequalities and, if the purpose of the system is not to address inequalities in some way, it does not fit in with the expectations of the Government and the people. I imagine that the discussion about purpose will run concurrently with discussions about methods of delivery, but purpose comes first. I am not sure that that has been framed as yet, and the fairer Scotland debate is an opportunity to do that.
Kayleigh Thorpe mentioned skill sets. The reality is that there will always be an absence of ability to assess every aspect of somebody’s needs. Therefore, we need to have the right partnerships in place locally. We work with Greater Glasgow and Clyde NHS Board on an employability scheme, which helps it to address employment issues in its area. Partnerships will be important and we should not expect that people will come with a full skill set and understanding; they just need to know the right people to talk to in order to fill the gaps.
I will pick up on a few points from the last round of conversation.
Having a single person or key worker would be really welcome. From our experience, the onus of having to manage the system usually falls on the carers. They may have to manage different people in the health, social care and welfare sectors. When we talk to carers, we often hear about how they become professional managers of the system. That can sometimes take away from their caring roles, because they spend entire days working through numerous different forms, ringing up different people or trying to work out when something is arriving, what they are entitled to or how they apply for it. I even heard of one carer who had to set up a spare bedroom as an office to manage the care of their loved one. The idea of having a single person or key worker to help to manage that is really important.
Whatever system we develop, we need to put good communication at the heart of it. That relates to information about what support is available, what the eligibility criteria are, how to apply for support and where the support is to help people to make applications. Good communication is essential.
My third point concerns identifying people for support. Many people can go through the process of being ill and, ultimately, dying without even knowing that they are entitled to support. The same is true for their carers. We hear about carers of people who are terminally ill not being identified for support to which they are entitled, such as social care or carers allowance, simply because they are not identified. That is partly because statutory services do not pick them up and because they do not consider themselves to be carers. Therefore, we need to ensure that identification is at the heart of whatever system we develop.
We have heard a range of suggestions. There are some differences of opinion, but I think that there is general support for key workers. The need for a definition of carers, to avoid the contradiction that might exist between different parts of the legislation, has been mentioned. The idea of a fast track for carers of people who are terminally ill was mentioned, too. We have debated who would be best placed to do assessments and who should deliver the benefits—what would be the role of local social work agencies, or should there be national agencies?
Have any of you thought of any changes that we have not yet talked about?
I want to share with the committee some research that Enable Scotland did recently with the families of children who have learning disabilities. The research looked at their experiences on the journey to diagnosis. One thing that stood out for me was not only the complexities around the welfare system, but the fact that the families were being confronted with quite upsetting, very deficit-focused questioning and forms. The parent of a child with a learning disability said:
“the forms are horrendous and it is so upsetting having to justify every bit of support your child needs and having to write in minute detail all the things your child can’t do.”
They said that it made them feel like a waster for claiming financial support for their child.
We would like to see a welfare system that is reframed more positively, to look at disability in terms of what the person could do, with support. Benefit payments could support participation and remove barriers, rather than being so deficit focused. I recognise that there is a need to look at the difficulties that people have, but I wonder how that can be reframed.
Richard Meade spoke about identifying the people who need support. That issue stood out clearly in the research that Enable Scotland did with families. Only 40 per cent of them were accessing benefits—the figures were really quite shocking. We have made recommendations on existing frameworks, or frameworks that are to be implemented, which could create opportunities for interventions to identify such people. We have suggested how to come up with appropriate questions about the family’s finances and we have looked at the named person service as a potential way to intervene and to offer people support through welfare. We need to look at the whole system to see where we can identify people and how we can ensure that they are getting what they are entitled to. That might involve reframing the system, or at least ensuring that people are properly supported so that they understand why they are being asked the questions.
Families are navigating two opposing systems. The school is looking at what the child can achieve and how they can support the child to do that. However, to get the support that the child needs at home, or to be part of society and to get everything that they need, the families find themselves talking all the time about the things that the child cannot do, which can be really upsetting.
It is all about how we frame the system and how people are supported.
I have a question for Kayleigh Thorpe about a suggestion that was made in some of the evidence. It was about benefits for disabled people being combined into one benefit with different variable components, for example for older people. I think that Falkirk Council housing support enabling unit and others put forward that proposal. Do you have a view on that suggestion?
I have not seen the proposal. I am not sure—I would need more information. We would consult our members for their thoughts. What kind of thing was being suggested?
The suggestion was about having a streamlined system, a bit like the universal credit, I suppose. There would be one benefit with different variable components that would change depending on the person’s specific case.
We talked earlier about passporting benefits and we would certainly like to see one assessment or application. Whichever benefits came out of that assessment would be awarded to the person, rather than there being lots of different applications and processes. That is very similar to what has been suggested.
It would be worth looking at the option that John Lamont mentioned, but also learning the lessons of universal credit so that we do not make the same mistakes. If we are looking at combining benefits in some way, let us not make the same mistakes.
I want to return to Alan McGinley’s point about purpose. In Scotland—and elsewhere—we tend to jump the gun and start looking at delivery before we understand what the hell we want to do in the first place. There is a risk that we jump the gun and start talking about national versus local, who delivers and who does not. We should go back to the purpose. What is social security for and why do we value it? Is it a right? Does Scotland want everyone who is entitled to it to get it without having to fight for it? It is about participation: having an economy that is based not on work alone but on people participating and being valued as citizens. It is about achieving people’s potential and reducing inequality.
We have a starting point that asks what the purpose of social security is in Scotland, why we are delivering benefits and what they should look like. Only then should we decide on the delivery mechanism and how that should work—whether through local authorities, or not. Our focus should be the emphasis in Government on reducing inequality and poverty, and tackling the issues that we know Scotland has to tackle. Social security is a critical element of that, so we must decide on our starting point. We can decide on delivery later.
That takes us back to the start of the discussion. What would you want to see done in Scotland that is different from what is currently done? For example, what do we think that carers should get? You say that we should have a debate about process and delivery. I accept that, but what do we want to provide for carers and what is the basis for that decision?
What should be the basis of a decision about benefits for people with disabilities and for those with long-term illnesses? What do we want to provide? What is the basis of a decision about mobility needs or attendance needs? What do we want to do? By all means let us then have the debate about whether the system should be national or local.
What do you believe should be done differently from the current system, leaving aside the debate that is taking place today about cuts to the benefits system and other cuts? In terms of the fundamentals of social security, what should be done differently or is it about taking the current principles and putting Scottish values and the Scottish context on to them?
Please do not replicate the current system. First, ask people what they want. We are not doing enough of that. Kayleigh Thorpe and others made the point that people are talking about this just now. Last night, I had a discussion with some carers online about what we want to see. It was about social care and not social security, funnily enough; it was about social care working more effectively.
We should look at increasing the carers allowance, which is the lowest of all income replacement benefits; at eligibility for things such as access to education, so that carers can learn and care and still get carers allowance; and at fairness, ease of access and ensuring some humanity in the system.
I lie awake at night and worry about my husband’s transfer to PIP. I am articulate and I know the system inside out. I live in fear. We need a lack of fear.
What about the issue that I raised about lessening the divide between benefits and work? If people feel that it is appropriate and suits their circumstances, should they be allowed to take on paid work without necessarily losing their benefits in the way that they sometimes do at present? Or should we say, “No, wait a minute. Work is totally different, so keep it away from benefits”?
They are absolutely connected. Fifty per cent of people with rheumatoid arthritis give up work in the first year and 80 per cent by year 6. They then become dependent on benefits, but they want to get back into work.
Benefits and work are intimately connected. The question is whether that connection can be addressed humanely, rather than punitively by taking things away because someone has increased their working hours.
As I said earlier, this is about building a system that is person centred. As Kayleigh Thorpe said, it is about looking at the positives in what people can offer. It is about looking not just at welfare, but at health and social care. It is all part of the same package on how we enable people to live well. That is really important in whatever system we build.
11:45
One of the principles should be a requirement for there to be fewer advice workers in the new system than there are currently. The way that we have described it, we are almost guaranteeing ourselves the job of unravelling a more complicated system. Whatever we do, there should be less need for a bunch of people to be explaining what that really means. Alternatively, as we said when we talked about key workers, perhaps responsibility for delivery should lie with the front line. Those workers could tell people what is available, what will happen and what they could do to get support, rather than them having to find out by saying to their MSP, “Suddenly I’m not getting any money. What do I do?” Christina McKelvie talked about that earlier.
I understand the philosophy that we should make the system as simple as we can so that people do not need to go to an elected member or an adviser, but unfortunately that is where we are.
We heard a plea for key workers who can help people by talking them through the system. Are we saying that the system should be so simple that we do not need key workers? Should there be key workers because people sometimes have difficulty in understanding?
We have to understand a lot of things and benefits is just one thing in the package. If someone is diagnosed with an illness, they have to learn what it means and how it will change their life. Professionals need to provide the technical and medical stuff. There are issues around rehabilitation, support or care needs that we never think about until we suddenly have to access them. Why can the professionals not also say, “And by the way—”? Some do that already by referring people to local advice services about their finances.
We are describing something that is normal for people. Most people will be carers at some point in their lives. Everyone is going to die, but it does not have to be treated in a specially horrendous way and made unpleasant. I am not saying that we can make dying pleasant, but we are all going to do it so doing it with dignity, without causing a major crisis and catastrophe for the person or for their extended family, is fundamental. Those are the principles that we should apply. It is not rocket science.
On the cheery note that we are all going to die, does anyone have anything further?
I am sorry that I was late. It might already have been mentioned but the principle of the current system seems to be that everyone is denied benefit and they have to prove why it should not be denied them. Perhaps we should turn the whole thing on its head and say that people have the right to access benefits unless there is a reason why they should not get them. That is the principle that we should be operating.
The system almost works like that. For example, if someone has a mobility need, the authorities go out of their way to prove that their mobility is not that bad. They put the person through tests to show that they do not need assistance.
There is a fine point around where the balance lies. We heard about problems with bureaucracy, and there is also a challenge from people having to work with budget-limited benefits.
I thank Simon Hodgson, Alan McGinley, Richard Meade, Suzanne Munday, Kayleigh Thorpe, Alan Weaver and Lynn Williams for their contributions. It has certainly helped us with the process.
11:49 Meeting continued in private until 11:54.