 Mark Russel. Welcome to the ninth meeting of the Social Justice and Social Security Committee. We have no apologies this morning. Our first item of business for today is a decision to take agenda items 5 and 6 in private. Are we all agreed? Felly, mae'r next item is consideration of a Scottish statutory instrument, the Discretionary Financial Assistance Scotland Revocation Regulations 2024. That instrument is subject to the negative procedure and the purpose of the instrument is to bring the Discretionary Housing Payment Scheme under the control of Scottish ministers and allow them to issue Scotland-specific statutory guidance. Do members have any comments on the instrument? I invite the committee to agree that it does not wish to make any further recommendations in relation to the instrument. Are members content to know the instrument? Our next is our third evidence session on the Social Security Amendment's Scotland Bill, which is currently at stage 1. The bill amends the Social Security Scotland Act 2018 to make changes to the Scottish social security system. Today we will focus on the concerns of carers of potentially vulnerable clients and concerns of clients who have a carer. I welcome to the meeting Fiona Collie, head of policy and public affairs Scotland and Northern Ireland, carers Scotland and member of national carer organisation, NCO, and Vicky Cahill, policy and public affairs lead Alzheimer's Scotland. Thank you for joining us today and thank you all for accepting our invitation. A few points to mention about the format of the meeting before we start. Please wait until I or the member ask in the question, say your name before speaking, and don't feel you have to answer every single question as well. If you get nothing new to add to what has been said, that is perfectly okay as well. I can ask everyone to try and keep questions and answers as concise as possible. Without further ado, I will now move into the questions. I invite Bob Doris to come in first. Good morning, both of you. Thank you for supporting our evidence session this morning. Probably a relatively straightforward question to start. I think that it is incontentious. Obviously, different benefits have qualifying deadlines and cut-off dates for which you can apply. One of the provisions of the bill removes the take-away, it appeals to Covid measures in relation to deadlines. I am just wondering if witnesses believe that there is still suitable flexibility for applying late or after deadline for benefits with that provision removed. Maybe start with Fiona Collie. We believe that there probably is, but we think that there is probably some clarity needed on when that flexibility exists. Consideration for delays brought about by care and duties, for example, illness of the care or not necessary or the cared for person, and the availability of advice services to support the individual to make an application. Just something about public clarification. Really transparent, open information about how those flexibilities sit and enable individuals to make the applications in time. That is very helpful. By removing the Covid qualification in relation to this, it also provides an opportunity to give clarity for what those other reasons might be. You are using that as an opportunity, Ms Collie, to get that. Vicky Cahill, do you agree? Yes. We would absolutely agree that clarity is absolutely paramount to make sure that processes are as transparent and as simplified as possible, both for the decision maker but also for people who are actually making those applications. There are existing measures within the guidance and regulations, and in practice, permission for late applications is very much part of the norm as part of social security processes, both for the Department of Work and Pensions but also for Social Security Scotland. It is our understanding that this approach would be able to be expanded to incorporate some of those reasons, including those by reason of Covid-19, which would satisfy the description as it currently stands in existing guidance that came about before the Covid-19 regulations, so it would satisfy the definition of good reason for early application, for example, if you were to have reasons related directly to Covid-19. I am going back to the point that Fiona has made about the need for clarification. We see that absolutely as an opportunity to review the rules and guidance around both allowing late applications but also by looking at the back dating of awards and the impact that that particularly has, particularly where deadlines are particularly important to be of benefit to applicants, wherever possible. We recognise that claimants might make applications at a time that does not allow for a full back date based on their entitlement, particularly due to the processes that currently exist within Social Security Scotland. For example, carers who apply for either carers allowance as part of DWP processes or carer support payments as part of Social Security Scotland processes, they are only eligible for a 13-week back date, so that is three months from the date of claim. Their entitlement is conditional on the person that they are caring for being in receipt of a disability benefit, so that would include benefits such as adult disability payment, attendance allowance and PIP. It is not unreasonable that a carer might delay making a claim until such times as the person that they care for is in receipt of a particular benefit. However, Social Security Scotland's data indicates, this is January's data, indicates that 8 per cent of claims for adult disability payment, for example, are taking seven months or more to be processed. That would mean that, for example, a carer who might be still providing caring duties and responsibilities during that window of time may not be eligible for carer support payment or carers allowance at this particular time. Therefore, they would be disadvantaged if they waited until such time as everything was signed off in terms of that disability benefit payment being put into place. There is an opportunity for us to have a look at how that approach to back dating and how processing claims can be made simpler to make sure that people are not disadvantaged by the processes that currently exist within the system. I think that that is very clear, convener. I do not have any follow-up questions, because I think that you have made your point very eloquently and the committee will reflect on that, so thank you. Okay, no, thank you very much. Now, moving on to theme 2, which is challenging decisions, which is part 3 of the bill, I am going to invite John Mason in. Thanks, convener. Now, when it comes to redeterminations, the proposal is that they could be made after a year if there are exceptional circumstances. In the first place, are you comfortable with the concept of exceptional circumstances and what it actually means, Ms Cahill? I think that we need a bit of clarity about what exceptional circumstances are. We would suggest that we look at a broad approach to defining what exceptional circumstances are. We recognise the impact that life events can have on your ability to make an application or to challenge a decision, so that could be ranging from anything from illness, hospital stays, bereavement, grief and loss. They all make a significant impact on your ability to go about doing that. From Alzheimer's Scotland's perspective, we are particularly keen to make sure that the impact of living with a cognitive impairment is defined within those exceptional circumstances and that there is a recognition of the complex needs that arise as a result of living with conditions such as dementia that might again impact on your ability to follow processes within the deadlines and the timeframes that are there. That is particularly important, but we also want to be clear about that it is important that those descriptors and definitions that are used for exceptional circumstances are not overly prescriptive and are not too narrow in terms of what they permit decision makers to consider and that each case should be considered on its own merits. A determination made by a decision maker is based on a broader understanding of the barriers and challenges that may face claimants. The process generally should allow for some level of discretion and we would support an approach that would enable that broadest understanding of exceptional circumstances. How common would it be in practice that somebody would have decided or gone ahead with a request for a redetermination? Hospital stays, for example, can go on for particularly long periods of time for people with cognitive impairment. You will all be aware of the challenges that come from for people who are currently unable to be discharged from hospital, there are delays to their ability to either to return to their own home and to be supported. Where illness is particularly advanced, advancing dementia makes it infinitely more difficult to be able to provide those supports. Although it is perhaps not the norm to allow that to happen, we have to accept that there are cases where that might happen and that where it is possible for us to make a provision to allow that to be the case and for those individuals who fall under that category to be supported, then it would be important that that provision is made. I absolutely agree with that. In relation to carers, we know from the carer census that about half of carers are providing at least 50 hours of unpaid care. If you are in the circumstances around things like hospital admission and discharge, if you are in a position of trying to manage multiple care and responsibilities, sometimes you will need a little bit of extra time. If we can make that clear, I think that we should do it, and I think that that is a positive development. The norm, as I understand it, is either 31 or 42 days for requesting a determination. So a year is quite a lot of extra time, is it not? It is quite a lot of extra time, but on those particular points around 31 and 42 days, it is a little strange to me that we have different timescales. It makes it very unclear for individuals who are trying to make sense of the social security system. I think that those of us who are enmeshed in it on a daily basis do not sometimes see quite how complicated it is and how off-putting it is and how difficult it can be for individuals to make decisions about how to apply for a benefit in the first place, but then how to make a decision about redetermination or appeal. 42 days, or would you make them all some other level? I think that whatever they are, they need to all be the same. I think that 42 days is in general okay for a lot of people, but to have the flexibility for a longer period is sensible, but in terms of public information, something that is consistent would be helpful. Okay, thank you. Now, part 3, there are certain measures that are aimed to reduce stress for clients, things like allowing individuals to withdraw their redetermination request. Are you supportive of that part of the bill? You are, yes. Okay, so straight forward. And are there any other measures that you think would improve the client experience for redeterminations and appeals? There are ways to improve processes and experiences for people who are going through the process of redetermination. It is quite stressful. Although the measures seek to reduce that level of stress, it does not remove the stress in its entirety. It simply can move a process along and provides a bit of a buffer in terms of managing timescales and being able to move it along, but it does not remove it. What would be helpful, though, would certainly be looking at swifter response times in terms of being able to get that processing done much quicker so that it is not something that sits and weighs heavily on someone whilst they are waiting for the outcome of a reconsideration, particularly where someone is not in receipt of any financial recompense that recognises the level of disability that they may have in terms of what it is that they are looking for. For us, it is also very important that we have simplified and easier processes that enable someone to do that and making sure that there is that clarity and flexibility within the system that allows someone with additional needs to be supported through that entire process from start to finish, whether that be support from a family member or a loved one, or whether that be from a professional who can provide some professional overarching guidance as to how that is? The point of getting a response quickly on that bit, which you have mentioned, would help people if they got a quicker response. Is that working at the moment? Again, there are different targets, but I assume that there are different targets for social security Scotland because some are more complex to work out than others. Absolutely. There are different variations in terms of how different social security benefits are operated within social security Scotland. Social security Scotland principally looks after disability benefits, which are based on a determination. It is a subjective determination based on someone's level of needs and the requirement for other options to provide support for them. Whereas other benefits, for example, where you might have to do a financial piece of decision-making based on statistics and data, is a very different prospect. There are timescales where that absolutely does vary, but it is important that wherever processes can be expedited, they should be. For example, social security Scotland has very good turnaround times when it deals with people with terminal illness. Under special rules, for example, it is currently meeting three-day target turnaround times for being able to deliver that for initial applications. We see that it is important, not just for people with terminal illness but for people with illness or disability more widely, to be able to access decisions but, again, with the caveat that they are good high-quality decisions. There has to be an adequate amount of time in order to be able to assess and consider it appropriately. However, wherever it can be speeded up, we should absolutely take steps to do that. If we speed up decisions, there is a risk of poorer decisions. Yes, there is a risk, but we also need to consider accessible information and accessible support. We know that from the NCO organisation MECOP, around the support for those whose first language is not English and around 11 per cent of the population in the UK have limited or no English skills. There is the practical information that is available to individuals, whether that is in different languages, whether that is in braille or large print or indeed BSL, that is available as well. Thank you, convener. Thank you very much. Before we move on, I invite Jeremy Balfour in for a subplot. Good morning. Thank you very much for coming. It was just in regard to representation of your clients. My understanding is that you can tick a box and you can represent someone for three months, but after that you have to go back to Social Security Scotland. Is that causing you any problems and would it be easier if you could tick a box to say, I want to be represented from the start to whenever the final decision is made? From our perspective, we would suggest that that would make things infinitely easier in terms of not having to retread old ground. However, we would have to build into that system an opportunity for people to step away from that arrangement if that is what they so desired at a later date. For example, declaring someone to be their representative or someone who is prepared to act on their behalf. However, if they change their mind at a later date and may wish for someone else or for themselves to take on that responsibility, that would have to be built into any system or set up to be able to do that fairly. Thank you. I know that we are still early days, so there won't have been many, many first-year tribunals here and yet. However, I understand that almost all of those are now taking place either online or through the telephone. Is that a disadvantage for the people that you are working for? Would a face-to-face be easier on some occasions and should that be the norm rather than the exception? From an Alzheimer's Scotland perspective, in terms of our dealings with people living with dementia, we would absolutely advocate the position that face-to-face hearings would be significantly easier for the vast majority of people living with dementia who might be in such a position whereby they would have to attend a tribunal. Managing over the telephone or digitally can be very difficult and acts as a significant barrier to a lot of people with dementia. However, we always believe that options are really important, so whilst that may be very difficult for some individuals, for others there may be a preference to use digital or telephone opportunities. Therefore, we would suggest that those opportunities remain in place, and if that is a preference, that is something that we could be delivering. However, equally, that face-to-face for us would be an essential offering for people living with dementia. I would absolutely concur. I think that choice is fundamental for individuals and certainly for care, or sometimes digital can be a lot easier to support someone through that process. However, for others, a face-to-face is much more preferable. If we have the options available and it is not optimal for only telephone and digital to be taken place, the face-to-face option must be available. Thank you very much. That was very helpful. I am moving on to theme 3, which is overpayments, which is part 4 of the bill. I invite Katie Clarkin. Appointees and other formal representatives would only be liable for overpayments if they misused the funds and would not be liable for honest mistakes. There is also an existing requirement to have financial circumstances before seeking to recover overpayments. Do the witnesses agree with making formal representatives liable in those circumstances? I do not know who would like to come in first. I will come in fairly briefly. The idea of making representatives liable is a difficulty with overpayments. Sometimes there are genuine reasons why people will make an application and they have got it wrong. Payments are being made, and they have got it wrong. I know that there is a provision that you should have noticed, and sometimes that is not the reality of individuals' lives. I think that there is something about having compassion in the system. We know for unpaid carers that there can be significant consequences if there is an overpayment because of the nature of the benefit. In general, the liability should not be with the individual for whom he is being represented. The liability should be with the representative, but we need to be really careful about it, because what we do not want to do is discourage individuals from supporting disabled people. We also want to take account of the circumstances in which an individual may have very significant care and responsibilities, be a power of attorney or a guardian, and be trying to manage the benefits of individuals and the household finances. Sometimes it can be really difficult to unpick who the benefit is for and who is getting benefit from the benefit to many benefits. I think that we just need to be quite clear, but I certainly welcome the fact that there are appeal rights in it. That is a good step forward. We agree that we do not want to discourage people from acting as representatives or appointees at any point. People who are prepared to step up should be supported to be able to do that, so we should not put additional barriers in the way of that. We have a few concerns about how the determinations as to whether funds have been misused might be determined. It might be quite difficult to identify what might be covered by this particular scenario in terms of determining what misuse of funds is. Disability benefits such as adult disability payment do not prescribe how people in receipt of those benefits are representatives who are responsible for administering those benefits on behalf of someone who perhaps cannot manage their own affairs about how they should be spent. Making determinations of what is misuse could potentially be quite difficult. When there is no direct requirement for you to provide or purchase particular things with your benefit, who is to say that, for example, going on holiday or going out socially or purchasing a vehicle is a misuse of funds when that could be for the benefit of the individual for whom the benefit is being claimed, so that in and of itself can be quite challenging. Likewise, we believe that there might be some difficulty in identifying the difference between an honest mistake and something that is perhaps more around making a deliberate attempt to gain benefit from doing so. For example, how might it be determined if an admission of information is as a result of a genuine oversight or a lack of knowledge or understanding of the process or what is a deliberate concealment of information in order to gain some benefit? For example, if an individual enters hospital, there is a requirement for them to declare that to Social Security Scotland. At a time of great stress and juggling lots of different things, it could be quite easy for that to be an oversight in terms of doing that. Where do we draw the line then in terms of then determining what is the difference between a direct attempt at concealment in order to continue to benefit from that payment and what is genuinely simply an oversight and nothing more than that, so that can be quite difficult? We would generally reiterate the point that there needs to be fair and reasonable processes and that there needs to be quite clear and robust structures in place that can support carers and representatives, but equally we also have to make sure that there is on-going support as part of that process to reduce the likelihood that such an event might not occur again in the future. It is not simply about looking at a single instance, it is about looking at the wider picture as well. That is very helpful. The person being cared for cannot already be liable for noticeable overpayments caused by the representatives and the bill extends that to include overpayments where a person would not necessarily notice that they were a result of an honest mistake by their representative. Do you agree with that? I do not know if Fiona would like to come in first again. I think probably no. If someone has a representative acting for them, that is because they require support to manage their social security and I do not think that there should be a position where they are liable for that. I think that that seems fundamentally unfair. I would absolutely agree with the comments that Fiona has made. It is unfair and unreasonable to expect claimants where additional support needs, clearly evidenced by their needs for a representative in the first instance, to have to take on that role and that responsibility of doing checks and balances and making sure that all information is done on their behalf. I think that we would absolutely make the point that we would consider that to be very unfair. Following on from that theme, I will invite Ross McClellan. Good morning. Thank you very much for coming along. I am going to continue on this theme. Obviously the balance of this has got to be right and certainly the evidence that we are taking is that this is very fine movements that we are looking at. Following a bereavement is where I want to focus on. Is it possible that the deceased benefits could be overpaid in this instance? Do you have any comments on the ability to recover benefit over payments from the state of an individual who has died? Fiona, I am going to start with you and then come to Vicky. Obviously it is very specific, but I appreciate what you think on it. I do not think that I need to tell anyone in this room that it is a really difficult time when you lose someone and particularly if you have lost someone that you are caring for. There are a lot of things that you need to deal with and just the practicalities of being able to deal with things such as a funeral, things such as stopping care services, things such as equipment. It grows and grows and grows. I think that we just need to be a little careful about understanding those circumstances and having a compassionate approach to that. In general, I know that it is in line with other benefits, for example pension credit, where you have to pay the money back fairly immediately. That can be really, really distressing. I can speak to someone who has actually been in that position and it is really distressing when you are trying to deal with everything else. I think that there is just a bit of balance in there just to make sure that the individuals are not being placed under additional stress. Estates can be very variable. Let us be honest, somebody's estate could be minuscule and when you are talking about paying for funerals and things like that as well, there can be nothing left and then there is an attempt to reclaim. I think that there is just something about balance and compassion in it. So yes, we would agree that there is absolutely a need for sensitivity in terms of managing the winding up of people's estates. That includes considerations around the timing for requests but also having a look at the correspondence that is sent out, the current correspondence that is used both by the Department for Work and Pensions and also by Social Security Scotland. Initially, it offers some degree of condolence to the individual in question responsible for doing so and then the next line is literally a demand for money. That is not the most compassionate and appropriate way in which to make a request for additional funds. There are opportunities for you to write out to debt recovery who are responsible for taking in any overpayment that has occurred as a result of death. However, those processes are not particularly clear and not widely known, particularly among the public. Perhaps there is an opportunity at that point to think about what those processes might be and under what circumstances someone might be able to request that the overpayment is written off by Social Security Scotland. For example, if money has been paid as a result of simply the payment processes that are in place—for example, some benefits are paid three weeks behind and one week ahead—which would automatically result in an overpayment. That is not as a result of anybody declaring late or delaying or notifying Social Security Scotland. There should perhaps be some flexibility built into the system that takes into account those wider parameters in order to be able to support people at a really difficult time. That is very helpful. I was going to ask for a couple of suggestions of what you meant by balance, but you have just given me them. Thank you very much indeed. I will work on all the questions here. I will move on to team 4, which is appointees, which is part 5 of the bill. I will now go and invite Paul O'Kane in. Thank you very much, convener, and good morning to the witnesses. I suppose that perhaps this is a broad question. What experience do you have in terms of the appointee system, both under DWP and Social Security Scotland, as it stands? What is your experience of that process? In terms of Social Security Scotland's processes, we have very limited access. Obviously, they are relatively new, so the opportunities for engagement around that have been much more limited in terms of processes for department for work and pensions. We have a bit more scope in terms of how that works. Broadly, we have not come across significant challenges around appointeeship. We are not dealing with significant numbers of people who are having difficulty either being recognised as an appointee or who are having difficulty in changing details or being used as that particular individual. That would be the extent of our experience at the current time. We have had the odd inquiry around the DWP processes, but, in the main, it seems to work effectively. Obviously, the bill requires DWP appointees to be authorised by Social Security Scotland as soon as reasonably practical. What are your general expectations on how long it should take Social Security Scotland to authorise an appointee? We had a discussion with other witnesses just about timescales expectations and that sort of thing, so it would be good to get your sense of that. I would say that I probably have not got a particular timescale in mind. For us, it would be something that is within the timescale of the payment of the benefit. If it was something around a three-week, one-week benefit that is within that period, the next time the individual has to make any contact that is in the position of being able to be an appointee for Social Security Scotland, I would note that in the early discussions around DWP to Social Security Scotland and having to change that, there is just a general frustration that there has not been able to be an automated way of doing this. We recognise that there is a need for due process to be undertaken and that the actual process itself does take a bit of time because that has to be determined by the capacity of Social Security Scotland to be able to carry out those processes, so processes include face-to-face visits, speaking to both the person who wishes to be an appointee and, in most circumstances, the person who wishes to appoint someone to act as their representative. That can take a bit of time. In addition, we recognise that sometimes additional information is also required. For example, that could be medical reports or something that helps to make the determination as to the reasonableness of the request for someone to act as a representative. In that kind of timescale, we believe that it would absolutely be perfectly reasonable to request, but we are aware that it is very much based on the capacity of Social Security Scotland to be able to deliver that. It is possible to speed up the process of checks if they have already previously been carried out by the Department for Work and Pensions. It is possibly worth having a look at what agreements can be arranged between the Department for Work and Pensions and Social Security Scotland reciprocally in both directions, where perhaps some of the checks that have been carried out by DWP, that information could be shared to enable Social Security Scotland or DWP in the reverse to carry out just a quick oversight of that, particularly if someone has had an appointeeship organised within the last six to twelve months. It would not seem unreasonable to place the administrative burden on to Social Security Scotland rather than the expectation being placed on either the claimant or the claimant's representative to have to take on additional burdens as part of that. Perhaps something around some kind of memorandum of understanding or other reciprocal agreement might be a worthwhile route to consider, particularly for people who are claiming benefits from both the Department for Work and Pensions, such as the pension service, pension credit and universal credit, but then, for example, claiming a disability benefit here from Social Security Scotland. Those answers are helpful. Just in terms of some of the practical suggestions, because I think that I am sensing the frustration about perhaps blockages if I can use that expression in the system. Obviously, the bill will create empowering opportunities if you like to do that, but obviously a lot of the detail then comes in terms of how it operates in practice. Do you feel that Social Security Scotland is engaging in terms of some of the suggestions that you made, for example, or that conversation about a more automated process from Fiona? My understanding is that Social Security Scotland and the Department for Work and Pensions are engaging, and they are looking at ways to work alongside each other and to support claimants. That is ultimately the crux of what we have to get to. It is not about individual bodies and authorities taking that approach of being overrule the other because of the geography. Ultimately, what the aim of the bill and what the aim of practice, most importantly, is about supporting claimants to get what they need as quickly as they possibly can and without any further additional barriers to what already exists within the system itself. I understand that Social Security Scotland has to have due diligence in relation to that, but there seems to be—we have one public body that has already made a decision, with a range of information that is appropriate to have in a pointee. Again, that can be simply transferred. I know that this has been a challenge, and it was a challenge around child disability payment. However, there are some agreements between the DWP and Social Security Scotland. I think that it would be more sensible, and I think that it would take the pressure off individuals, because ultimately, as Becky said, it is about ensuring that individuals get the support that they need and get it quickly and do not have additional stresses to have to deal with. I move on to theme 5, which is information for audit. I will invite Marie McNair. Thank you, convener, and good morning. The plan was great to see you this morning. Do you agree with part 6 of the bill and the ability to spend people's benefit payments if they repeatedly fail to provide the information that is required to social scoot Scotland? I think that I could give a mixed message to that one, of a kind of yes and no. I think that the information in this section is pretty unclear. I think that we need a lot more information about the intention and the scope, and where an individual may or may not understand what is being asked of them. There may be very good reasons why they are not engaging. We need to make sure that, if part of the bill goes forward, that there is very good information available for advisers and for the public, because there is good information on the Social Security Scotland website about the benefits themselves, but not some of the more tricky parts that are accessible for individuals, not for advisers who have a very different technical understanding of the social security system. I absolutely agree with the point that Fiona has made. We would iterate the point that suspending payments does not really align with Social Security principles. Therefore, I am sure that it is no shock that we would disagree with that particular approach. There are some issues around the language and the wording that is used, and that is where the clarity that Fiona has asked for is imperative. For example, defining the term repeatedly. How many times does that mean repeatedly? What methods of contact are we going to be using in order to be able to try to establish contact with someone? Is it going to be a continuation of the same where, if you do not get a response the first time around, are we going to repeat the exact same process the second time around? Therefore, we require much more clarity in terms of how that will play out from a practical point of view. From Alzheimer Scotland's perspective, we need to have a clear understanding about the needs of people living with dementia. They are often older people, although not always, and they have sometimes very difficult, complex needs. In order for them to be able to engage or be part of a process of sharing and providing information, it takes a lot of effort on the part of the person requesting the information, not just the individual who is being asked to provide it. We need to think about things like how information is being communicated, how is it possible for decision makers or people who are requesting that information to explore the needs of claimants and making sure that their needs are being met and that they can be supported to provide what it is that they are being asked to do. Looking at alternatives, are there other ways to obtain the same information that perhaps does not place such a significant burden on an individual? Are there other routes in order to be able to access that information? Generally, we would suggest that there are other ways and means of being able to look at information again. If there is any suggestion of any significant evidence of particular wrongdoing, that has to take a slightly different approach, but where we are looking at reviews of information or where we are trying to establish conditionality based on eligibility criteria, perhaps the burden lies more with the decision maker than with the individual who is receiving the benefit. I think that you can kind of answer my next question with the kind of support that the clients would need. Obviously, you are saying that information is key to the client to understand the process. Is there anything else that you can want to add? I think that there is also time. I cannot emphasise that enough in relation to carers. They are very time poor. It is one of the things that carers consistently say to me, that sometimes caring is the least stressful part of it. All of the bureaucracy around it, including social security, is hugely stressful and hugely time consuming. I also want to note about ensuring that we have accessible information and that there are protections for those who have protective characteristics, including ensuring that the information is available in the language that they need it in, whether that is a language that is different to English, whether that is in Braille or large print or whether that is BSL. The individuals are very well aware of what information can be provided to the man in a form that they need and have a right to it. You have a right to information in a way that you understand it. That includes things such as ensuring that, as a person with cognitive impairment, the information that you receive is understandable and sometimes letters from bureaucracies are not necessarily that understandable for anyone. Just to reiterate the need for accessibility, accessibility is absolutely key in order to encourage participation. Going back to that point about having choice and having options available to you, we might be providing written materials, we might be thinking about audio-visual materials, digital online options, face-to-face, sometimes speaking to someone directly just to have an opportunity to discuss what information is needed, why is it needed, having a face-to-face conversation with someone who can explain it in a way that makes it more accessible, more relatable is really important. Again, not everyone's needs will be exactly the same and it is about exploring what individual claimants' needs are, so those options and choices absolutely have to be available. Our last theme is on social security principles and I am going to invite Jeremy Balfour in. Thank you. We are coming towards the end, you will be glad to hear. Do you have any comments or any other specific measures about Immobil that you have not had a chance to comment on yet? For our own point of view, we will go back to the points around compensation recovery. We referenced that in our written response around compensation recovery and to reiterate the point that sometimes people have multiple conditions or disabilities that will coincide with an injury or illness that might come about as a result of an accident or injury for which someone is being compensated. We feel that it is really important that an individual who might otherwise be entitled to benefit, notwithstanding the issue related to the compensation, that should absolutely be taken into account. For example, someone with a dementia may have symptoms whether or not they have a diagnosis. That should absolutely be taken into account before any recovery measures are put into place that would potentially disadvantage someone. That should be a slightly broader approach in terms of ensuring that we are not just looking at the compensation award in its sole existence. We have to look much broader and beyond that to look at the wider circumstances of someone who has had a compensation award. I think that I want to concur with that. There are often additional hidden costs. Those could be things such as adaptations and reasonable expenses. The fact that, for some compensation payments, they are about support for the rest of someone's life. We just need a little bit of compassion. That is something that has been really important around the creation of Social Security Scotland and the benefits system about dignity, respect and compassion. Ensuring that everything that we do, including the recovery of compensation payments, is thoughtful, compassionate and considers all the circumstances that individuals and their carers are living in. That is really helpful. If I can open up slightly wider, this is a chance for us, as a committee and for Parliament, to review the act that was passed. Is there anything that you would like in the bill? That is not in the bill. I appreciate that you have only got a few minutes, so I can go on for a long time. I think that the opportunity to create new support within the bill opens up the opportunity to look at what is missing from the initial creation and the benefits that are being transferred. It has been brilliant that the Scottish child payment has been created. We would probably argue that that assistance and the eligibility should be extended to those who have children and who receive carers allowance. However, there are other opportunities to have a think about what is missing and what we have learned over the past years and months of cost to live in and how energy costs have gone through the roof, particularly for disabled people. I think possibly in addition to the suggestion that Fiona Smith has made about extending the scope for social security here in Scotland. I think also thinking about those supports and measures that people might need to access and providing a clearer, easier pathway to ensure that people can access the professional support that they might need to navigate a system that is as complicated and challenging sometimes as social security. I think that potentially having a look at how we can structure that support, which often comes from the third sector, although we have some provision within local authority arrangements, but they are hugely variable. It is perhaps worth having a consideration of how we make that a much more fair and even playing field for people to be able to access the support that they need to navigate their way through the system. Do you think that the bill aligns with the social security principles? There is a good exam question. I think that, broadly speaking, it aligns with the principles and with the exception of those around information audit. I think that I was quite clear earlier in my response that suspending payments does not align with the principles of the bill. Otherwise, broadly, yes, they do align. Very quickly, I shall agree with that perspective. I think that you have probably picked us up with just one fine opportunity. In regard to the client experience, you have just carried out with what you said, but, out with that, is there anything there that you are still concerned about the client experience? Either things that need to be in to make it easier or things that need to come out to make it easier. I think that you have probably covered a lot of that already, but just to find a sweep-up if you have any other final comment to make. I think that, broadly speaking, where we seek clarity is around how, operationally, the bill will be practically exempled within its use within Social Security Scotland processes and practice. We do absolutely need some clarity around how particular processes will work, what safeguards will be put in place and whether or not they will be sufficient to meet the needs of vulnerable claimants particularly. I think that the move towards those new steps in the bill largely seek to try and improve the experience of claimants and their representatives. However, the proof is in the pudding, so it is to put it, and that will be very much from how it is actually played out in actual practice and in day-to-day experiences. We will wait and see. I think that I would agree on that. To emphasise the need for clarity, the need for good information and the need for accessible information, we agreed that Social Security is a human right, and we need to make that practically real for everybody who applies. That includes ensuring that, across the piece, we encourage take-up of Social Security within the reserved system as well. We will make the pathway for individuals as smooth as possible. Thank you both for all the work that your organisations do. I know that you have helped so many people, so thank you for today as well. Just very briefly, I was very impressed by witnesses' answers in relation to Mr Balfour's call for what more would you like to see. Ms Cawley quite rightly made a call for greater financial support and got a consistency in that financial support across groups. Ms Cahill spoke about improved pathways, which would have a financial implication, but not as much, of course, as the direct financial support. Of course, it is not for the witnesses here to see where that money would come from. Of course, not you should champion the corner for those that you are representing. I am conscious that the Scottish Government spends £1.1 billion more on entitlements to those who are vulnerable needing support than they get in finance from the UK Government. There is clearly a divergence between the funds that are available to support those who need extra help and the extra help that is required because of the UK situation. I am not drawing you on any of that. I am genuinely not. That is the context of the question. The question is what advice would you give the Government or the committee? With a limited budget, we have a very difficult job in weighing up where the next… Ms Cawley, this is not the situation, but if £10 million was to become available, it is not, I am afraid, but if it was, how does the Scottish Government determine what area to invest that money in? Some would argue to increase the Scottish Shell payment further, others would argue to increase the entitlement to that or spend on a whole other area carers perhaps. How does this committee or the Scottish Government reconcile those competing demands? You should make those demands absolutely. I would expect you to do so. You do so powerfully, passionately and persuasively, but how do you reconcile those tensions? It would be nice if there was a £10 million. I can think of many ways to spend that. I think that when we look at some of the poverty figures, the poverty for unpaid carers, but equally the poverty for disabled people. I think that about half of households in poverty have someone with a disability in that household. We really need to think of the cost of not supporting people and the costs are borne elsewhere. It is a really difficult conversation to have when we talk about prevention and health inequalities. If you spend on something that will reduce the health impact, there is a reduction in cost elsewhere. Sometimes it takes a while to see that cost come through. That is where we tend to come in terms of the balancing. The poverty that disabled people in their carers face is so huge. It is such an impact on their health and wellbeing that is paid for elsewhere in the Scottish budget that we need to have a bit of a think about the prevention and where investing can help to produce that part of it. Does not solve the quandary that the Government and the Committee finds ourselves in, but again a very persuasive argument that you make, Ms Calh? Part of it is about the whole system design and looking at the general infrastructure and where you maximise the potential for future cost savings. It is hitting things further upstream, which is obviously a preventative approach. We are talking about early intervention, which can then prevent further costs. It is a really difficult challenge to Lee Baear, and it is not a challenge that has any quick or easy answers, otherwise I am sure you would all have come up with them by now. That whole system approach is really important. I would add the importance of having a look at that lived experience and where you can make that impact. Listening to people in terms of their experiences on the ground and where you can make those particular changes. Naturally, I will advocate for people living with dementia, people living with long-term complex care needs. I am sure that others can make equally sound representations for people in other parts of society. However, what we need to be thinking about is a much longer-term strategy, which will make sure that each of the areas that we are all trying to push forward and champion have the ability, from the system that exists as it is now, to move forward with that and be able to see improvements so that the experiences on the ground are better. It is thinking about what impact you can make with the money that you have. If a problem requires £100 million and you have £10 million, what advantage is there in throwing £10 million at it? It might well be nothing. However, if we are looking at something where £10 million can make a specific change or can make a specific improvement, that experience for people on the ground will be very different. Again, the success of the Scottish Child payment example is that you have been able to show that by having that particular pocket of money and directing it and targeting it at a very particular group of individuals, you can create that change and that impact in a way that it has felt quite acutely by those who receive that benefit. Again, it is not a quick fix, but it is about looking at where you can maximise that impact. No other questions, convener, but can I just put on record that I thank you to both witnesses for championing so passionately the way that you do, and it is very helpful to this committee. That concludes this evidence session. On behalf of the committee, I very much appreciate you joining us today. Next week, we will continue to take evidence on the bill with a panel focusing on part 7 of the bill that concerns recovery from compensation payments. I now briefly suspend the meeting to allow for the setup of our next item. Welcome back. Our next item on the agenda is a presentation on the additional costs of disability in Scotland. The committee commissioned a piece of research on the topic in March last year to inform its scrutiny work. Following a call for bids, the research was awarded to joint bids by the University of Strathclyde and the Poverty Alliance. I welcome to the meeting two of the authors, Christy McFadgen, Knowledge Exchange Associate Economics, Fraser Avalander Institute, University of Strathclyde and Dr Laura Robertson, Senior Research Officer of the Poverty Alliance. Thank you both for joining us today. I believe that you will first take us through a presentation of your work and findings. I will pass on to Laura for some of our work. Just for context, I have been working more on the quantitative side of the research and Laura more on the qualitative side. If you could direct your questions in that sense, it will probably make more sense for us, but we will try to be as good as we can on both sides of it. Additional costs that are faced by disabled people are recognised as being detrimental to quality of life. For any given income, disabled people are not able to realise the same standard of living as a non-disabled person. Additional costs are many and varied, and they depend on individual circumstances, including type of disability, household composition and rurality. Those additional costs are concerning not only from the point of view of fairness, but the impact of poorer living standards is also potentially significant and can lead to poorer outcomes in relation to wellbeing and health over both the short term and the long term. In recognition of higher additional costs for disabled people, a system of disability benefits has long been established as part of the UK social security system and is now part of the devolved benefit system in Scotland. The Social Security Scotland Act 2018 states that Scotland's social security system will be designed based on evidence. However, to our knowledge, there is no Scotland-specific baseline of the scale of additional costs faced by disabled people. That report takes a step towards a better understanding of the additional costs of disability in Scotland. We have looked at the limited data available to analyse the scale of additional spending that is faced by disabled people in Scotland. To contextualise and supplement our findings from the national survey data that we have used, we have also worked with six disabled Scottish residents who have provided information about their extra costs and their experiences of accessing support to us through weekly diaries and interviews over a five-week period. In terms of definitions, we refer to the Core Equality Act definition of disability, which states that a person is disabled if they have a physical or mental impairment, which has a substantial and long-term negative impact on their ability to do normal activities. In that context, long term refers to a condition that lasts or is expected to last 12 months or more, and substantial refers to the condition having a non-trivial impact on daily activities. A bit later, we will talk about severity of disability. Normally, in national surveys, people who are referring to their disability can say that they are either limited in their daily activities a little or a lot. When we talk about severity and a more severe disability, we are referring to that a lot category. A preview of our findings before we take you through them properly, our findings show that the best available data is far from perfect and cannot tell us enough at this stage. We find some evidence of additional spending in food, energy and health, and we find less spending by disabled households in transport. We cannot say whether the additional costs in the spending data that we use are statistically significant because of small sample sizes, but they are persistent over time, which gives us some trust that they are true effects. Data on spending also, importantly, does not capture needs that are not being met due to a lack of income, or what support is being received that may already compensate for additional costs. We will start off by going through what the data can tell us. I will start off with our findings across all disabled versus non-disabled households in Scotland, and then Laura will take us through some of our qualitative findings, and then we will go into some of the breakdowns that we have done, including urban versus rural households and some more stats on severe disability and extra spending there. First of all, the bit of intro on the data that we use in this report is from a survey called the living costs and food survey. The survey contains expenditure data for individuals and households across the whole of the UK. This is the best expenditure data that we have available for our purposes since it is designed to be representative of the UK population. It indicates whether each household member has a disability and it allows us to look at Scotland specifically. We have supplemented that with findings from the weekly diaries that I mentioned. That is from six disabled people in Scotland over a five-week period, and those diaries took place in January and February of this year, 2024. Just as a bit of context, the diaries are not designed to represent all disabled individuals. We would never claim to do that with just six diaries. Instead, they are there to provide context of the lived experience of additional costs related to disability, including the potential drivers of those costs and other reliable support and how that interacts with people's lives. Also, we wanted to look at the impact of the continued higher costs of living in 2024, which the data that we have cannot provide since its data from 2021 to 2022 is the latest that we have available. In our report, if you have copies available, you can have a look at table 1 and figure 1. What those figures show is the additional spending by disabled households in Scotland compared to non-disabled households across four essential categories. Those categories are food, energy, transport and health. I have a bit of a primer on how to read those figures, because I might not be quite intuitive. A positive number in those boxes means that disabled households are spending more. If you take, for example, a non-disabled household spends £20 per week on health expenditure, if a disabled household spends £21 per week, then the box would be a positive number 1. We will look at the difference between spending. We have looked at the total spending, the mean total spending across those categories, and we have subtracted disabled households minus non-disabled households. We have that difference in there. If it is a positive number, that means that disabled households are spending more. If it is a negative number, that means that non-disabled households are spending more. Our main findings are that we have slight extra spending from disabled households on food, energy and health, and we have less spending on the transport category. Actual spending is a lot more variable than the means show due to different household incomes. That is why we have split the sample into income groups. Our goal with that was to, instead of comparing a disabled household on a really low income with a non-disabled household on a really high income, we do not want to be comparing those because spending is probably wildly different anyway. What we wanted to do is compare like with like. We have split our sample of households into five equally-sized categories. Income group 1 is the lowest incomes, so it is the 20 per cent lowest incomes, and income group 5 is the 20 per cent highest incomes. We are always comparing disabled versus non-disabled households that have similar levels of income to understand where the differences are. The figure that we have in the chart shows across all income groups, so you can see the variety across income groups, and the table shows you the mean difference in expenditure. For food, we have zero, for energy, we have one, for transport, we have minus 17, and for health, we have two. We have seen slight additional spending across food, energy and health, and we are seeing less spending in transport. One thing to note on this is that we have the mean of the food expenditure being zero, so we are not seeing additional spending once we average everything out across the five income groups. However, when we looked at previous years, we did see additional spending in food. There is a potential effect of inflation here because all low-income households have spent more of their income on food than in 2021-22. If they have a limited amount of money that they can spend on food each week, the limit could be reached faster in disabled households than non-disabled households due to additional costs associated with disability. That is something that Laura will touch on a lot more, but it was one of our first realisations when we were looking at this data that we are not seeing any unmet need in this data. We are only seeing what people are able to spend money on. We are not seeing what people are unable to spend money on. In terms of transport, our data shows that disabled households spend less than non-disabled households on transport. We believe that that effect is down to a combination of factors. First of all, disabled people take less trips on average than non-disabled people. We have evidence from that from the Department of Transport and, of course, the UK study in 2017. Secondly, disabled people are more likely to have access to free transport via a free bus pass or similar. Again, that is just a reiteration that this is only spending data. We are not seeing use of services in here. That is something that we will touch on a bit later. Social support may be covering expenditure that we would otherwise see in here if that social support was not available. Laura Smith is now going to talk about one of our case studies from our diaries. Just to give you a bit of context about the diaries, as Carsty has mentioned already, the diaries are specifically looking at the needs that are not being met for a group of six disabled people that took part in that part of the research. Of the six participants, there was one who was an employment, one who was a student and four who were receiving universal credit or employment support allowance alongside personal independence payment. One participant was getting adult disability payment. Just to start off with a bit of a summary of the diary participants. Of the six participants, four of the six participants said that they were going without basic essentials every week during the five-week diary exercise. Five of the six participants said that they were finding it quite challenging or very difficult to manage on their incomes every week as well. I am going to touch on one specific case study, a man with a physical disability who uses a wheelchair in receipt of personal independence payment and with high mobility and middle care and also receiving employment and support allowance. Across his diaries, he reported mainly finding it very difficult to manage on his income. He had a range of additional costs for his disability and some of those are outlined in the briefing that he has. In particular for him, costs around taxis but also energy costs. Energy costs were key across all six participants' diaries as one of the highest costs. There were also specific treatments that he was having to pay for as well and he also had to hire people to help with household cleaning and other household tasks. In terms of the diary and what he was sharing every week, he was experiencing very cold times in January and February. The bad weather meant that he had had to use his storage heaters frequently. In one week of his diaries, he recorded that the costs come for £100 for storage heaters that week. High costs of food and heating in that particular week meant that he shared that he had to borrow money from his family because the income that he was receiving through ESA, alongside what he got from PIP, was not sufficient. In most of his diary entries, he had not been able to get his basic essentials every week, so basic things like food or energy costs. A quote from his diaries is that he often has to make difficult choices between heating and eating. Another effect of the high cost was having to cut back on social activities outside of his home. There are obviously effects on isolation and loneliness. I will now talk more about the breakdowns that we have done in the data. First of all, we are looking at additional spending for those with more severe disabilities. We see similar results in the LCFS data when we compare those with a severe disability to all other households, including comparing them to those with less severe disabilities. The only obvious difference in the data for those with more severe disabilities is that they have less additional spending associated with health spending. We think that that could potentially be due to those with more severe disabilities being more likely to draw on NHS care for their condition rather than relying on over-the-counter options, but we cannot say the exact reason from the data alone. In table 2 and figure 2, we have had to omit income group 5 because they had a sample size of less than 10 observations for those who are severely disabled in that high-income group. That is to highlight the limitations of the data. When we are taking a survey of around 5,000 households across the UK, about 20 per cent of those are Scottish, and we are cut by disability and severity, we are getting down to really low numbers of households that we can look at. It shows the limitations of the current data that we have in terms of when we want to collect evidence. It is harder to do, and it is harder for it to be reliable when we have smaller sample sizes. In terms of urban versus rural areas, we also looked at differences here. Figure 3 shows that those in urban households seem to be spending more than rural households in the spending categories of food, energy and transport. At first glance, that might seem somewhat surprising, since we know that rural areas often face additional costs compared to urban areas. As I said before, sample sizes become even smaller when we split disabled households by urban versus rural areas, meaning that we are even less sure that we can trust those figures compared to those already volatile Scottish averages. It is possible that what we are seeing here is the extra cost of living in a rural area overshadowing the additional costs related to having a disability. Similar to what I said before, if people have a limit to the amount that they can spend on essential categories, it might just be that disabled households are hitting that limit faster and they are simply not able to spend more on that amount, so we are not seeing that evidence in the spending data. We do however see evidence in Figure 3 that disabled households in rural areas are spending more in the health category, and we are not sure why that would be and why that is coming out differently to the food, energy and transport. A further interesting difference is the large difference in spending on transport between urban and rural areas for disabled households compared to non-disabled households. We are not sure whether that is a true effect or a result of per data that is mentioned above. If it is a true effect, one factor that could contribute to that is relatively fewer public transport options in rural areas, which could act as a barrier if private transport is not an option for households. We have gone over what the survey data can tell us. As mentioned, the findings from the LCFS are variable and small sample sizes become an issue when we analyse urban and rural areas and those with more severe disabilities. There are not extra costs in every disabled household in Scotland, so that creates overlap, which means that we cannot say whether those results are statistically significant or not. However, they are, as I said before, persistent over time, which makes us more confident. I have also included UK-wide results for comparison in the appendices, if you are interested in looking at those, and they show similar trends. Importantly, part of why we have included the diaries in the research is that data on spending cannot quantify financial difficulty, so Laura is going to talk a bit more about the findings from the diaries now. I am going to talk through two other case studies from the participants. I am going to touch on what some of the consequences are on their day-to-day lives of struggling on their incomes and particular costs that they identified that they were struggling to meet. There were examples of participants having to get financial support from family friends or considering getting a loan because they were struggling, and energy-related debt was also mentioned by two other participants. We also included a prompt for any additional forms of support that they might have accessed, so we wanted to find out about things that are outside of benefits, such as social care support, for example. One of the participants was receiving self-directed support for 10 hours a week, but the rest of the participants were not. However, two of them were using their disability benefits to pay for social care. One participant had access to a Scottish welfare fund crisis grant one week, and another who was struggling with her energy costs had received the worm home discount, but apart from that, there were no other forms of additional financial support mentioned in over the five weeks for each of the participants. The diaries reveal on a weekly basis how much the participants are having to plan and make adjustments to try and lower their spending. High cost of living for energy and food were mentioned frequently. One participant said, "...I combined all my journeys outside of the home into one combined journey to save petrol costs, then did all my errands in one day, which resulted in experiencing fatigue and a day mostly in bed." Several of the participants reflected that they were so used to having extra costs of living related to their disability or their health conditions that, over time, they had come to almost normalise those costs. They became part of their routine and part of their weekly budgets. When we did the interviews at the start of the project, quite a few of the participants were saying that it had become just so normal to them that they had those costs that they had to manage every week. I am going to read out a bit from Jenny's case study, which illustrates the financial difficulty that she was experiencing and how that was impacting on her mental and physical health. Jenny has several health conditions, as in receipt of personal independence payment. Her health conditions mean that she needs to buy more expensive food and that she is restricted and must stay inside more. In the five weeks of taking part in the diary, she had to buy shopping on her credit card frequently, as she did not have enough money left after putting aside money for energy bills. In her week-free diary, she gave a specific example that she and her partner had had to cut showers back to every few days to preserve electricity and to be able to have enough money to put the heating on. She said, "...this will obviously cost me more in the long run, but I live from week to week, hoping the next one will be better." She noted the weekly effects on her mental health, as well as the negative effects on a relationship with her partner and her family. She said that the stress exacerbated her symptoms, writing, "...it is stressful and worrying." I often find myself on the edge of depression struggling to stay out of it. The next case study from another participant illustrates the experiences around accessing social care support. That was a participant who had a physical disability at the highest rate for care and mobility. He was using quite a big proportion of his income to have a social care assistance. He specifically said that he uses his PIP to hire personal assistance, and it also regularly has to use it for travel to and from work, as his transport expenses from his employer can take months to receive. He recorded that he had gone without basic essentials in all of his diary entries. He wrote in one diary that it is not unusual to use this benefit, so personal independence payment, in half the time that it should cover. He shared that distinguishing what his additional costs are was difficult as he feels that he has normalised those costs over time. Therefore, he has adapted and has to make his own solutions due to the lack of available social care support in his local area. He said specifically that, at a wider level, there is a lack of recognition of the social model of disability. Another issue that he raised when we did the interviews at the start of the project was about housing and it not being accessible for his needs, meaning that he cannot access and managing the energy in his house by himself. A consequence of that, he shared, was that he often has to sit in his flat wearing a hat and thermals and wears a clothes with an electric flier in winter. A big issue for him was the lack of personal assistance available in his local authority, and he is often feeling that he is having to call on friends' family for support, which he said that he does not want to do. Therefore, he is often not able to access the support that he needs. He shared the following impacts in his diary entry. One week, his shopping and house cleaning was shelfed, so he was not able to have that support that week, so that he could go to a social event instead and get support for that. In week 5, he said that he would love to have greater personal assistance support and use it when I need it, rather than generally trying to fit in with the paid worker in terms of what their availability is. He said that he would love to have access to a resource that is user-led, such as the service one by Glasgow Centre for Independent Living. I will pass back to Kirsty now for some final conclusions from the research. Just to conclude, spending data from the Living Costs and Food Survey shows that disabled households in Scotland spend slightly more in essential categories, such as health and energy, but less on transport. However, as we have seen from the diaries, disabled households could be rationing essential spending due to financial difficulty. The LCFS data is far from perfect. Small sample sizes are a problem at the Scotland level, particularly when we start to look at severe disability in urban versus rural households. We have put some more information on sample sizes in the appendices. Importantly, the spending data does not capture what households need but cannot afford. The diary entries show that the six participants' incomes are not providing consistent adequate levels of income for additional costs associated with having a disability or health condition. Although those diaries do not represent all disabled households in Scotland, there have been other studies that show similar findings on a wider scale. For example, Scope in 2023 looked at the difference in material deprivation levels between disabled and non-disabled households and found that disabled people's incomes, including disability benefits, provided a lower standard of living when compared to non-disabled households on the same income across the UK. The impacts of the cost of living crisis on deepening levels of poverty among disabled people has been evidenced in various qualitative and quantitative research. In particular, people with disabilities in the UK have been affected by rising energy and food prices and are more vulnerable to increases in the essential costs as they make up a higher proportion of their budgets than they do for non-disabled people. Recent qualitative research commissioned by the Truswell Trust found near consensus that disability payment levels were too low to meet the extra costs associated with physical and mental health conditions. For some of the participants in the diary exercise, a lack of available support from the social care system, including personal assistance, was a recurring challenge. Therefore, there are wider implications around social care support that meets the needs of people with a disability or health condition in Scotland. Getting the right social care support in place could reduce the additional costs that disabled people face. Some of the interviews also highlight the importance of the right housing that better meets people's needs, which is also a crucial issue. Going forward, policy makers will need to think carefully about how to measure additional costs of disability and the adequacy of benefits in other public services to ensure an evidence-driven approach. We do not believe that there is an existing source of quantitative data that can provide robust enough evidence on the additional costs of disability in Scotland. Even if that was the case, the personal nature of disabilities means that costs are likely to differ markedly between different people. An effective evidence-based policy to meet additional costs of disability will need to recognise that, rather than assuming a one-size-fits-all approach. That is us. We are happy to take questions. Thanks very much. Before I invite anyone in for a question, can I just apologise, because I introduced you as Christy when it is actually Kirsty. My humble apologies to Kirsty. Obviously, the research that you have given us has been really useful in the insights into the hidden costs of disabilities and the extra costs. Do you, as researchers, have any suggestions on the best way to approach further research on this particular issue? If I can invite Kirsty in, first of all, thanks. One of the main things that I spoke about is that, if we want this evidence-driven policy approach, then we need more evidence. Some surveys in Scotland have such as a labour force survey and the annual population survey is a Scottish boost that is paid for by the Scottish Government, which means that we have better sample sizes and we can have better data on that. That is one option of improving sample sizes if we want to have more robust evidence on that. As we said, there is also so much to do with whether the appropriate social support is in place. A lot of times in the diaries we have seen that a lack of social support was causing extra costs for people with disabilities. I think that looking more into whether social support and social care is adequate and whether barriers to accessing that support could be useful in thinking about what are the additional costs of disability that we cannot get rid of through better policies in other areas. We have already referenced other qualitative research from Glasgow Disability Alliance. In the inclusion of Scotland, I have also published research last year about the impacts of increased costs of living and the deepening poverty for disabled people. I would always recommend more research about lived experiences. That is obviously quite a short term, quite a small-scale project. We were not looking to have a very diverse sample, so we have not spoken to families, for example, with a disabled child or a disabled adult. There is research that could be looking at those different experiences and how households are managing. I also think that with the ongoing impacts of the cost of living crisis, more longitudinal research followed people with a disability or a health condition over time. Obviously, we were limited. We were just looking at a five-week period to see at different time points of the year and how they are managing at different points. Obviously, that was in January when energy costs were higher. It would also be a really important evidence space to have. That is really helpful. I am going to open it up to our members. I wonder if you want to come in, Marie McNair. Obviously, in your conclusion there, you recommended careful consideration given to additional costs of disability and how inadequate benefits levels are. Are you aware of any other countries across the globe that we could learn really, if they are doing it right? Do you have an answer to that, even? Can I feed back to the committee? It would be quite interesting to see how other countries elsewhere are doing. We have done some work on learning disabilities from the Fraser Valander Institute. Some of the work that we have done on data has been quite useful in learning from other countries, such as New Zealand. They do their census in similar periods to us, but when they find that people have a type of disability that they are interested in learning more about, they will do a booster survey that brings more information in on that. That is probably something that we can learn from more generally. I do not know of any other countries that are doing it right. I think that it is one of the most complicated issues that everyone is trying to get better at, but we are definitely keen to have a look at that more and maybe feed back to you later. It would be great. Thank you. I am now going to invite Jeremy and then I will bring in John. I think that it is helpful to read this report or to remind the other report that you did recently on disability and employment. Actually, they go quite well together, and I raise quite a lot of questions around that. There are a number of questions that I would like to ask, but for time, let me ask just one, which is quite a long question. Our deputy convener will always tell me that we have political choices to make of how we spend our money, and he is absolutely right on that. Can I put that over to you for a moment and say that if you had another £20 million to spend, would you make a universal benefit for disabled people? Would you increase adult disability payment, or would you target it in some way? Dr Robertson might have said that it is not one meet to disabled people of different needs and different ways, so how do we target this money if we had it? Is it through a universal benefit, or is there another more nuanced way you can do it around that? For me, it comes back to that commitment to have evidence-based policymaking. We have only done a short time study here, but there is more work that could be done to understand this issue better. I think that the first thing that I would do with money would be to try to gather that evidence more so that we have a good understanding of exactly what additional costs are, where needs are not being met and then base policy and benefits on that, because from the evidence that we have gathered, I could not tell you how to spend the money. I know that that is even harder for you to then decide where to put things. For me, it is definitely about gathering more evidence first and trying to really understand the issue so that we are not spending money in a way that then ends up not being something that is evidence-led. We end up having to go back and do things again. Just to come in as well, from a poverty alliance's perspective, so, outside of the research that we have been doing, we would be calling for increased incomes for people with disability that are living in poverty in Scotland. In the session that was on just before ours, one of the witnesses said that just over a half of people in relative poverty live in a household where there is somebody with a disability. There is clear evidence just now that people with disabilities are more likely to be living in poverty. There are decisions that should be made to increase incomes for people who have a disability. By what means, I am not sure, but it is clear that it is not adequate at the moment. I suppose that the issue that I am trying to work out, Dr because I suppose that personally I have probably fallen into income group 5, but if you increase either disability payment, I will benefit as much as somebody within income group 1. I suppose what I am trying to work out, and I do not have the answer, but I am trying to work out is how do we increase the income of group 1, 2 and 3, maybe, but not necessarily directly back to group 4 and 5, who overall will have extra cost can probably meet those. I suppose what I am looking for is a way of how we identify those individuals. Maybe there is not the data there yet that we have. I mean to find that, but I am concerned that if we just simply do it universally, although everyone benefits, it does not benefit those who need it more enough, if that makes sense. The example that was discussed in the previous session around Scottish child payment and learning from that, so obviously that is a passported benefit for families that are receiving universal credit and other eligible benefits. That has been successful in pulling a lot of families out of poverty, so that has been a really successful policy in Scotland. There is useful learning there about identifying families that are already struggling. One thing that I would caution is that there are a lot of people in Scotland currently in work poverty and low-paid work, who might not be getting one of those eligible benefits. They will have those support needs as well, so thinking about that and making sure that there are not certain households, particularly those in low-pay work, that are missing out. I invite John Mason in now. I was struck starting with a specific on your page 4, figure 1, where the transport costs in particular were quite starkly different. That maybe follows on from Jeremy Balfour's point. It was very interesting that the highest income group, if I am reading this correctly, that is at the blue line, has dropped the most dramatically. One of your themes seems to be that disability affects a lot of different people in a lot of different ways. For example, some disabled people can still drive and some people can't, so that would presumably be a major factor. If you have to give up your car, your costs are going to drop dramatically, but you also make the point about spending doesn't equal needs. I am guessing that there are some people who are disabled who would be able to drive but cannot possibly afford the cost of a car. I do not know what the transport is. What is it telling me? Is it telling me that there is a great need there that is not being met, or is it telling me that the concession car system is so good that people do not need cost? It is a combination of things. The first thing that stands out to me is that we have UK evidence that disabled people travel less than non-disabled people. That is something to potentially look at as to the reasons why that is happening. Why are disabled people travelling less? Is it because they do not have access? Is it because there is a lack of affordability? We do not know, but that could be looked into more. As I said before, with concession bus passes, we do not know who has won in this data, so we cannot tell whether people are travelling and just not spending money on it. From the larger numbers here, it seems like the prevailing thing that is happening is that people are just travelling less when they are disabled. That is something to look at in terms of disabled people having access to society and being able to travel where they want to and when they want to. It is something that we see with the extra costs on energy. We know that disabled people are spending more time at home, which means that energy costs can be higher having to heat their homes. It is all tied in, but it is definitely something that could be looked at more. That follows on. The message is that we need a much more in-depth and bigger survey. I think that we are all agreed on that. Who should do that? Is it best for the Government to do that, or is it a third sector organisation? It is difficult to say. What I always come back to is that, as long as something is well resourced, that is what is important. If it is well designed and well resourced, we will get the evidence that we need. If the Government wanted to do it, working in partnership with organisations that have specific in-depth knowledge about disability, poverty and incomes could be useful, but it would be up to you. You said that there is a split between your activities that are affected a lot or a little. Is that too basic? Do we need to get into a lot more detail on that? I would say that, based on the data that we have, we should not be splitting things any further, because it is already really difficult to understand. Jeremy has mentioned some of my other work that we have been doing in the disability employment gap, for example. We have seen that in the disability employment gap, people with different types of disability their employment gaps are closing faster or slower. In the long-term and in an ideal world, yes, we need more evidence on specific types of disability and who has additional costs based on what needs they have. With the current data that we have, cutting the data into any smaller chunks would mean that we are looking at maybe one or two people in the sample, which is obviously not useful for us. If we have more resource to collect more information, then yes, we would definitely want to split by something that is more. We use that because it is the national definition that is used in terms of disability, but, yes, the types of disability would definitely be really good to look at. I was not sure if you wanted to come in, Dr Robertson, or was that a most of my questions were aimed at Ms McFadden? No, I think that Kirsty is the expert and the questions that you asked. I believe that that was Jeremy offering up your services again, Kirsty, for further research. I am going to invite Bob Doddison. Thank you for the name check from Mr Walfour. In the earlier session, I suggested an imaginary £10 million extra that is doubled in the space of half an hour, Mr Walfour has played with a £20 million that does not exist. I want to ask a wee bit about what is not in the survey, and I get data issues and massive restrictions on what both of you were able to collect and analyse. The Scottish child payment has been mentioned. I had a wee look there, and the internal review of the Scottish child payment from July 2022 indicates that 16 per cent—I am not sure if it is the applicants of recipients, but around 16 per cent of people in receipt of the Scottish child payment at that point—had a disabled person in the household. It may be that we have got a benefit already that supports those living with disabilities where there is a child in the household and the household is on benefits. In fact, that report suggested that, because 8 per cent did not want to say if there was a physical or mental issue within the household that there could be underreporting, because it could be up to 24 per cent of Scottish child payment payments may go to households with a disabled person in there. I think that it was Ms McFadden that suggested that that has had an impact, but it may also have an impact on disabled families. I am not asking you a question about what is not in the report, but did that come on your radar at any point? That is quite a significant positive impact, if so, but it also begs the question what we are doing for households where there is poverty and disabled people, where there are not children there. I get that as well, so that is a consistency of approach. Any comments on that, perhaps, Ms McFadden? We did not look at any benefits in terms of the data that we were looking at. We looked at disability benefits briefly, but we did not include that in the final report, because we were finding very similar results. Whether people with disabilities were claiming or not, we were seeing similar extra costs. It would be interesting to look at that in terms of Scottish child payment. We decided to look at the household as a unit in this research, because we recognised that the household generally does not receive benefits. I mean that you could definitely have a point there, but we have not looked at it specifically. I do not know, Flora. Do you have any thoughts on that qualitatively? Obviously, we were very limited with this research. I mentioned that it did not include families. We were not asking whether there was anything around Scottish child payment there. If it was families' experience and you wanted to capture it, I am not sure without checking, but inclusion and Glasgow Disability Alliance have both published research in the last year, qualitative research and quantitative survey data about the impacts on different types of households, so there might be evidence relevant to your question there. That is helpful. I should note that my understanding is that Social Security Scotland does not routinely collect data on households claiming Scottish child payment where there is a disability. I mean that is something that they have to improve their own data collection on, but do we know how many families—do we know the split between disabled households living in poverty where there are children there or there are not children? Do we know the split in relation to that? I could not tell you the numbers off the top of my head, but they should be available in national surveys. I do not know whether it would be in the Social Security Scotland one or in the family resources survey, but I personally do not know that figure. I could not either. The big source of data as well as the Joseph Rowntree Foundation's annual report and I am not sure if they have broken it down by that, but that would be the first place I would look also. It is just because of the political choices that Mr Balfour was referencing would be that the Scottish child payment will have an impact in some households where there is a disability in poverty but not others, so we get to see the ones that we have to maybe drive a focus on. I think that Mr Balfour was suggesting, or floating the idea rather than suggesting, of targeting an additional resource. Did either of you look at ultimately the way that we get money to people in need in society in Scotland and across the UK for those of working age through the benefit system and probably that is universal credit? Did either of our witnesses look at the sufficiency or otherwise of how universal credit recognises disability within households in terms of addressing poverty? We have not looked at that. As we said, this was a very limited study, so we have just looked at the living costs and food survey and the six diarists. It would definitely be an opportunity for further research to look into that. That is very helpful. The final thing that I would say is just maybe a comment, as a very brief one, convener. I cannot reflect in the comments that both of you have made in relation to pressures on social service provision and meeting the care needs of families or individuals where there is someone living with disability. I think that we will maybe draw the attention of the lead committee that looks at that kind of thing as a matter, of course, but I just wanted to reflect on that. I have listened to what you have said in that area. Dr Laura, did you once come in there? No, nothing really to add, but that was very clear for the participants out of the six, just that lack of accessible support locally and then having to make decisions what they used it for. It also happened to use their pet for a large proportion of that as well, which was quite an interesting finding. Thanks very much. I do not know if any other members have any other questions at this point. I thank you very much for undertaking that research and presenting your findings to us today. It will obviously no doubt be very useful for the committee's on-going scrutiny of benefits in Scotland and future inquiry work as well. That concludes our public business for today, and we will now move into private to consider the remaining items on the agenda.