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Chamber and committees

Social Justice and Social Security Committee

Meeting date: Thursday, April 27, 2023


Cost of Living (Disabled People and Unpaid Carers)

The Convener

Our next item of business is a round-table evidence session on the cost of living crisis and its impact on disabled people and unpaid carers.

I welcome everyone. In the room, we have Becky Duff, director for Scotland at the Carers Trust; Richard Meade, director of Carers Scotland and Carers Northern Ireland; Stephanie Millar, policy manager at Citizens Advice Scotland; Morna Simpkins, Scotland director at the MS Society Scotland; and Adam Stachura—have I pronounced that correctly, Adam?

Adam Stachura (Age Scotland)

We will get there—do not worry.

How is it pronounced?

Adam Stachura

The C is silent—it is a bit like “loch”.

The Convener

Okay. Thank you.

Adam Stachura is head of policy and communications at Age Scotland. We also have with us Ellie Wagstaff, who is senior policy manager at Marie Curie Scotland.

Joining us online are Ruth Boyle, policy and campaigns manager at the Poverty Alliance; Allan Faulds, policy and information officer at the Health and Social Care Alliance Scotland—the ALLIANCE; Heather Fisken, head of policy and research at Inclusion Scotland; Steven McAvoy, senior welfare rights adviser at Enable Scotland; and Frazer Scott, chief executive officer at Energy Action Scotland.

We have received apologies from Susan Webster, who is head of policy and campaigns at MND Scotland.

I believe that we also have with us Suzanne Munday, who is Gypsy/Traveller service lead at the Minority Ethnic Carers of People Project.

I thank you for your attendance today—you are all very welcome. I ask everyone to bear with me, as this is my first committee meeting as convener.

We have chosen a round-table format in order to facilitate a free-flowing conversation. The committee is very much in listening mode, so please feel free to indicate to me when you want to come in. If you are attending online, please pop an R in the chat box and I will bring you in.

We will cover three themes. I will kick off on theme 1 and then invite Jeremy Balfour and Paul O’Kane to introduce the second and third themes respectively. We have approximately 30 minutes in which to discuss each theme; unfortunately, however, due to changes in the committee’s membership and delayed business from previous meetings, we have slightly less time than we had anticipated.

With that in mind, we move swiftly on to theme 1, which is the effect of high inflation on disabled people and unpaid carers. We are interested in hearing more about how the extra costs of disability have been exacerbated for disabled people and unpaid carers by the cost of living crisis. It would be helpful if you could point to particular groups of people who have been most affected and perhaps share information on how people have coped. It would also be useful if you could pick up on where there are any gaps in our knowledge and let us know of any research that is being undertaken on those impacts.

Richard Meade, would you like to kick off?

Richard Meade (Carers Scotland)

Sure. I do not mind talking about unpaid carers first. There are around 700,000 to 800,000 unpaid carers in Scotland. Every year, Carers Scotland undertakes a “State of Caring” survey across the United Kingdom. Last year, 14,000 carers responded to it, of whom 2,000 were in Scotland. The Scottish data showed that around a quarter of carers are struggling to make ends meet and, as a result, are struggling to pay for food and heating. They also face significant problems in getting essential items, and they are taking on debt as a result of those costs.

What is alarming is that that sampling was carried out during summer last year, before inflation started to climb and there were significant increases in energy and food costs. I am worried that the figures from that survey, which are already terrible, will be much worse when we come to this year’s survey.

Carers are one of the groups that are most vulnerable to financial disturbance. Without real action to stabilise carers’ income and support them, the impact of the cost of living crisis will be devastating for them.

I bring in Allan Faulds.

Allan Faulds (Health and Social Care Alliance Scotland)

I hope that folk are familiar with the report “Disabled People, Unpaid Carers and the Cost of Living Crisis: Impacts, Responses and Long Term Solutions”, which the ALLIANCE produced in October. That report is partly why we are here today, so I will pick up on some of the points in it.

With regard to how disabled people who are living with long-term conditions can be affected, we know that they face higher living costs. For example, people need to use more electricity for power-assisted technologies such as motorised wheelchairs, and we know from one of our member organisations, Chest Heart & Stroke Scotland, that the costs of using life-sustaining equipment such as sleep apnoea machines are going up.

People are also struggling with lighting. One of our members who attended an ALLIANCE event said that costs were now so high that, if they had not been at the event, they would not have had the lights on that day. A lot of people may find it more difficult than others to regulate their body temperature—they need to have their heating on constantly in order to keep themselves at a safe and warm temperature or their health will deteriorate, and heating prices have gone up significantly.

That has been exacerbated by the fact that, during the pandemic, a lot of social care packages were cut or withdrawn entirely, and in many cases they have not returned to their full extent, which has caused a great deal of difficulty for people. Carers have been unable to earn any additional money without losing their carers allowance, which has put them in difficult circumstances. For example, a lot of people are choosing to prioritise feeding a cared-for person instead of feeding themselves, which will obviously have a significant impact on their health.

The third sector has been stretched to its limit. A lot of our member organisations report significant increases in demand for services, but they find that they are not able to meet that demand, or they simply have to reduce whatever they are able to offer because demand is so high.


Those are just a few of the ways in which disabled people have been impacted more than the average person by the cost of living crisis. It is also worth pointing out that the crisis has followed the pandemic and a decade of austerity, the impacts of which were also not felt evenly across society, and fell on those who were already most at risk and least well off.

Thank you for making those comments to highlight some of the issues.

I call Ellie Wagstaff.

Ellie Wagstaff (Marie Curie Scotland)

I can speak a little about the impact of the cost of living on people who are terminally ill and on their families and carers. We say that there is a double burden that is caused by income loss and by the increased costs that are associated with terminal illness, which include higher energy bills and housing adaptations. Those can leave people struggling to make ends meet, and people who are already on the threshold can be forced below the poverty line.

Last year, Marie Curie carried out some research with Loughborough University on “Dying in poverty: Exploring poverty at the end of life in the UK”. It found that more than 8,200 people were dying in poverty in Scotland every year, which equates to about one in four working-age people and one in eight pensioners experiencing poverty in the last years of life. Being terminally ill can really increase the risk of being in poverty at the end of life, not only for the person who is ill but for their carers and families. The research also found that working-age people with dependent children were more likely to experience poverty at the end of life. That has always been the case, but the situation has definitely been exacerbated by the pandemic.

Marie Curie has an information and support line. Between April and September last year, about one in five of those who called us were calling because they were concerned about their finances, which was up by almost 40 per cent in comparison with the same period in the previous year. There were already some really troubling concerns, and the crisis has deepened those. Just before Christmas, we surveyed the Marie Curie community nursing team. The survey results showed that more than 60 per cent of our community nurses are really concerned about how people can afford to heat their homes and afford to live, and about whether they are having to choose between heating and eating. That should not be the case. Many of the existing issues have deepened considerably in the past three years.

I call Morna Simpkins.

Morna Simpkins (MS Society Scotland)

I will speak a little about the cost of living for people with multiple sclerosis. For most people who have MS, their symptoms begin at what should be the peak of their working lives, and around 80 per cent of those people give up work within 15 years of diagnosis. Someone with MS will have reduced earning capacity due to the progression of their condition. In addition, having MS costs someone, on average, an extra £337 per month because of the need to pay for heating, therapies or access to physiotherapy if they are not getting that from the national health service. The cost of living crisis has deepened those effects.

There are some stark statistics. For example, one in three people with MS cannot afford to eat balanced meals, and three in 10 people with MS have reduced or stopped their spending on essential therapies. I will come back to how people applying for personal independence payments have been affected by the 20m rule. In addition, there is the stark fact that one in six people who care for someone with MS give about 90 hours of unpaid care per week, with 41 per cent of people in that group giving more than 35 hours of unpaid care each week. The crisis is deepening, and it is hitting people with MS, and their carers, very hard.

Quite a few folk are joining us online. I call Ruth Boyle.

Ruth Boyle (Poverty Alliance)

Thank you for inviting the Poverty Alliance. We are delighted to be here.

I will mostly echo points that have already been made. What we must keep at the front of our minds during this inquiry is that the cost of living crisis has brought pre-existing inequalities in our society into sharp focus. Covid and the cost of living crisis are not the root causes of inequality for disabled people or unpaid carers; there are structural causes. We can see that there has been a disproportionate impact on disabled people and their carers because they are already more likely to experience poverty or to be living on low incomes and we know that people living on low incomes cannot budget their way out of this crisis.

The crisis has also illuminated the inadequacies in our social security safety net. Too often, the social security system fails the people whom it is intended to help.

We did some research with the Scottish Women’s Budget Group into experiences of the cost of living crisis and saw some of the ways in which women were adjusting their daily lives to make ends meet. They were things like rationing heat, going without food to feed their children and selling family heirlooms such as wedding rings to make ends meet.

As part of that research, we heard from a disabled woman who said that she was unable to get to the shops during the cost of living crisis and was almost wholly reliant on people in her community to access food. One of her neighbours was going to the shop for her and then calling her from the yellow sticker aisle to tell her what food she would be able to afford. It is totally unjust that, in a wealthy country such as Scotland, we have people living in that way.

Similar to the point that Richard Meade made, it is of great concern to us that women told us that they had run out of ways to adjust their daily lives to manage additional costs before we entered the winter months. We are really concerned about what that means for families over the crisis.

The evidence that we have already heard and that you will hear today highlights the disproportionate impact on disabled people. However, although the support that has been given has been welcome and a lifeline for people on low incomes, there has been a lack of tailoring and targeting in it. Although we know that there is a disproportionate impact, it has not necessarily been reflected in the support that has been given. For example, on the recent payment of £150 for disabled people, the increasing additional costs that disabled people incur in their daily lives, about which we have already heard, easily swamp that £150.

The Convener

Thanks very much, Ruth. It is interesting to hear about the added impact that the crisis has on women and the work that is being undertaken on that.

I will now bring in Suzanne Munday, who is online.

Suzanne Munday (Minority Ethnic Carers of People Project)

Thank you very much, convener, for inviting us. I will develop a little bit what Ruth Boyle said. Within the overall impact, there are particular groups that have been disproportionately impacted. I will highlight the experience of minority ethnic carers and, within that group, Gypsy Traveller carers.

We know that, for minority ethnic carers, one of the particular impacts has been the rising cost of food because of the particular dietary requirements of different communities, which are often reliant on specialist food providers and imported food. There has been a significant increase in the cost of food shopping for those communities.

My second point, which is about the Gypsy Traveller community, relates to fuel poverty. The £400 financial support that was available to everybody to assist with increased fuel costs was welcome but not sufficient. However, there was a group of people in the community who were overlooked in that: families living on local authority sites where the local authority is the account holder and individual households have no direct relationship with a utility provider. For them, Westminster did not enable access to that £400 until the beginning of March so, during the really cold winter months, those families had to meet the increased costs of fuel from quite static and often reduced household incomes.

Linked to that, there is a reliance on liquid petroleum gas in that community, and the cost of Calor gas went through the roof. That is all linked to the overall poor state of accommodation. We know from research that a higher proportion of the Gypsy Traveller community lives in fuel poverty overall, so all those costs have already exacerbated significant financial demands on the community.

One of the structural issues to which Ruth Boyle referred is that, for all the communities that we work with, digital exclusion is a huge issue because much of the welfare benefits system is online, and there are poverty-related issues with being able to afford devices, connectivity and contracts, for example.

All those things have come together to create a perfect storm for communities.

It was extremely interesting to hear about that aspect of it, particularly about our marginalized groups. Thank you again for highlighting that.

Stephanie Millar (Citizens Advice Scotland)

The way that Citizens Advice Scotland gathers its data means that we can track across groups and see what advice they seek. An example is that 9 per cent of adult disability payment claimants seek advice on food banks, and 8 per cent of them seek advice on other charitable payments, which includes things such as fuel vouchers. We see some deep-rooted issues around disabled people seeking help with poverty-related issues. For instance, 16 per cent of our adult disability payment clients received advice on gas and electricity, which is 206 clients a month. Those issues are absolutely connected.

I will pick up on things that other witnesses have said; I think that we will all say broadly similar things. This problem was exacerbated by the cost of living crisis, but it was in existence well before the cost of living crisis. Everyone in the room knows that disabled people are more likely to be in poverty. They are more likely to be in fuel poverty, they are more likely to have higher living costs and they are more likely to have higher energy costs. All of that existed before the cost of living crisis came into being.

I would like to reflect on the fact that the payment of £150 was the only targeted support that was specifically given to a person on the grounds of them having an impairment and additional needs. Considering the data that I have just provided, you can see that people come to us with deep-rooted poverty issues, and that £150 is not going to touch the sides of people’s additional energy costs.

I will give a couple of examples of clients to give members a picture of this. There is a single parent who is caring for two children, one of whom has 24-hour complex care needs and has nurses coming in due to those complex care needs. A high level of fuel is being used for medical equipment. The client’s bills have more than doubled, and they just cannot pay them any longer.

Another client is a single parent with two children. One of the children has a sensory disorder and requires special lighting and facilities, but their parent can no longer put the energy on for those special facilities, which means that the child can no longer go to school. There are knock-on impacts from some of this; it is bleeding into other areas that will have long-term impacts on health equality.

The final point that I would really like to stress is that this is a cross-cutting issue. The cost of living payments were welcome—and they were useful, although they were not enough—but the bigger issues relate to housing, energy, energy inefficiency and welfare benefits. Cross-Government solutions will be required to address the underlying causes of this.

The work that Citizens Advice Scotland does on data and statistics is invaluable, so I thank you for that.

I will now bring in Frazer Scott, who is online.

Frazer Scott (Energy Action Scotland)

Good morning. The cost of living has impacted on everyone, and high energy costs have resulted in a rise from one in four households in 2019 to somewhere in the region of 40 per cent of all households—almost 1 million households—in Scotland meeting our legal definition of fuel poverty. That increase has risen more recently because of the—[Inaudible.]—removal of universal support at the same time as high energy prices endure in the economy.

Vulnerable people, low-income households and people with a disability and essential medical needs have all been impacted disproportionately. You will hear that from other witnesses and will read it in the evidence that they have provided.

Polling that we undertook in autumn with National Energy Action showed that 81 per cent of people were already rationing their energy use and—incredibly worryingly—13 per cent were reducing the use of their medical equipment.


The Scottish Parliament introduced the Fuel Poverty (Targets, Definition and Strategy) (Scotland) Act 2019. That was progressive. The act recognises that some people have a need for an enhanced heating regime, which means that their homes stay warmer for longer. If they are able to meet the costs of that enhanced heating, they can spend more than 60 per cent more than people who have a standard heating regime. We know that it is important for people to stay warmer for longer, and our legislation determines that that is important, yet no supports that have been provided recognise the scale of such an increase.

It is for the Scottish ministers to define who would fit into the category of needing enhanced heating. We have recognised it but we have not acted. We have heard that the UK Government did not provide significant financial support that could in any way address the enhanced heating requirement.

We do not have any recognition of an enhanced power requirement. Things are very much focused on heat and lighting instead of on the additional needs of people who have certain kinds of condition. Such needs might be for mobility scooters, oxygen equipment or kidney dialysis. My written submission mentions evidence from Kidney Care UK that suggests that it now costs almost £2,000 a year to run a kidney dialysis machine at home. We are simply not stepping up, collectively, to provide the right level of support to maintain people’s health and wellbeing. There is no enhanced power requirement in the 2019 act, and I recommend that we consider introducing such a thing.

Energy costs are two and a half times what they were in 2019-20. That has ramped up the costs for everyone who has additional needs. Those are all-time highs. They are further impacted by people’s living in inefficient homes, as half of us do. If, through geography, someone lives in a home that has electric storage heaters, for example, that can add a further 50 to 100 per cent to their heating costs over the winter, compared with a household that has gas.

Although financial support has not recognised any of the inequalities that existed just within the energy system or the impacts of those on vulnerable people, we are at least beginning to talk about changing the way that things are, through a social tariff, with a lower energy cost base, to ease the burden. However, even if energy were 50 per cent cheaper than it is today, it would still be more expensive than in 2019-20.

We need to prioritise people who have vulnerabilities such as disabilities and essential medical needs and who live in the poorest-quality homes—yet the warmer homes Scotland programme, which is the Scottish Government’s flagship fuel poverty programme for helping such people, is in hiatus. It is currently closed until October, despite the summer months being the best time during which to act.

As I have said, we need a proper consideration of what enhanced heating means in Scotland and a consideration of what enhanced power could look like. We need to deliver a far fairer system than the one that we have. We need to achieve equity, not simply universality of support. As I said, if energy costs are reduced through a social tariff, that is for all those who qualify. However, in Scotland, we have already recognised that some people need to live in warmer homes for considerably longer, and to be considerably warmer. They have—in some cases—eye-watering additional costs for maintaining and running essential equipment in their homes.

Thanks for that, Frazer, and thanks for some of the recommendations that you have set out. Those are much appreciated.

We move on to Heather Fisken.

Heather Fisken (Inclusion Scotland)

Good morning. Thank you very much for having Inclusion Scotland here today. It is important to remember that many unpaid carers are themselves disabled people. Those are not necessarily two separate communities, especially because they are very likely to live in the same households, with the same household income and outgoings.

Points about the historical legacy of welfare reform and austerity, the inadequacy of benefits, and the impact that the actions taken to mitigate the pandemic had on disabled people in their households have been well made already.

Disabled people come into the current cost of living crisis far behind so many other people. They simply do not have the resilience that other people have to cope with such emergencies. There has been very little direct involvement of or engagement with disabled people—or, importantly, unpaid carers—on how to deal with such emergencies.

I do not want to repeat the points that have been made before. The issue that we have noticed most often from our research and surveys and from speaking to our members is the impact that the situation is having on people’s physical and mental health, regardless of whether that is an impairment that they already had. It is also having an impact on their relationships. They are accruing more and more unaffordable debt and, as time moves forward, people are increasingly being pushed into poverty; people who were not already in poverty before this crisis are now in poverty, and it will be hard for them to get out of that.

We have touched on elements of income and the inadequacy of benefits—and that assumes that a person is entitled to benefits. We still have the 20m rule and the 50 per cent rule in relation to adult disability payment.

One of the biggest costs that most of our members face is having to pay for social care charges. Somebody told us that they or their daughter had been approached by a sheriff’s officers to pay charges for services that were not delivered during the pandemic. People are having to pay social charges for services that were not delivered. They are being fined and chased for that.

We also know that there are disabled people in our membership who are worried sick about the effects on their household of their not being able to pay for heat and food for their worsening conditions, about their not being able to use equipment that they require at home and about their being forced against their will to end up in an institution or being unable to get out of hospital.

A smaller issue that has not been touched on, and which we find particularly interesting, is people telling us that they have cancelled payments for their fall buttons—the round-the-neck equipment that a person wears at home and presses if they fall or have an accident so that somebody will come in an emergency. That is surely preventative, is it not?

We have tried to find out how much those fall buttons cost. For some people in some local authorities, they are free of charge. In other local authorities, there is a payment. Based on what we have found out so far, the cost ranges from £5 to £20 per week or per month. It is really difficult to pin it down. People are having to go without very basic things due to what might appear to be very small costs but that are not small costs for somebody who is living in hardship.

Another issue that has been reported to us is around food banks. Nobody ever wanted to see the continuation of food banks. We want to live in a society that does not need food banks, but they are there and they are helpful. However, they are not necessarily accessible for disabled people, particularly those living in rural areas who do not have the benefit of transport and who cannot go to a food bank that might be many miles away.

We heard from somebody who said that their food bank did deliveries during the pandemic, which was really helpful because those deliveries meant that the food bank was delivering when they could not afford supermarket food. However, that service is not supplied across the country. Food banks also do not provide food for the special diets that people might have as a result of their impairment, and they quite often deliver things such as tins or vegetables that need to be prepared to people who do not have the manual dexterity to use that food and therefore cannot do so.

The Convener

Thank you for your contribution, Heather.

I am aware that time is running out, so I will bring in John—I am sorry; I meant Adam. I apologise—that is the second time that I have got your name wrong.

Adam Stachura

Do not worry, convener; I will not hold it against you.

I will make two points. First, over the past 18 months or two years, a particular concern of Age Scotland has been older people of retirement age—state pension age—who are on very low incomes and are undertaking care responsibilities but do not identify as carers, in part because people who are in receipt of the state pension are not entitled to benefits such as carers allowance. There is a lack of some other incentive for them to be part of that system, where support could be provided.

We know that 42 per cent of people who receive the state pension in Scotland take home less than £12,500 a year and are not eligible to pay income tax because their income is so low, and 40 per cent of those on the lowest incomes who are eligible for pension credit, which would top up their state pension to what the Government reckons is the minimum that someone should be able to live on, do not claim it. That means that around 120,000 older households in Scotland are not getting what they are entitled to.

Those people are really struggling with the essentials of paying for food and/or heating and powering their homes when, as Frazer Scott said, energy costs have gone up by two or two and a half times. Food prices have gone up 30 per cent, if not more, on many items—prices for certain essentials are up by 70 per cent—and folk who are undertaking a caring role, or who may be disabled themselves, are not able to meet those kinds of costs. A lot of people will struggle because they are not in the system, which would enable them to get support or payments that might help them financially.

I back up what Heather Fisken said about social care charging. We would be delighted to get from the Scottish Government a date on which social care charging will end, as per its past announcements to that effect. We should find a date for that so that people who require social care, particularly those on the lowest incomes, are not spending a lot of money on paying for the things that simply enable them to live a decent life. I am sure that everyone round the table would welcome having a firm date for that.

Thank you for that, Adam—it is much appreciated.

I bring in Steven McAvoy, who joins us online.

Steven McAvoy (Enable Scotland)

I will make one quick point. I agree with pretty much everything that has been said so far.

Enable Scotland’s welfare rights service supports a significant number of people who have a learning disability. As well as the cost of fuel increasing, we often see issues with people understanding their bills. Even I find it significantly difficult, in looking at my own bill, to understand what is being charged for and why, and to ensure that I am on the correct tariff. People who have a learning disability really struggle with that.

We previously supported a client to get them on to a vulnerability scheme with a provider, but that seemed to mean only that they got their letters in large print, which did not solve anything. We could do better to ensure that people with learning disabilities are on the correct tariffs and can understand their bills and get proper fuel efficiency advice.

The Convener

Even I sometimes do not understand the bills that come through—they should be much more user friendly. I thank you for your comments on that; they are much appreciated.

I am conscious that several people are making some good comments in the chat function. Unfortunately, because it is a chat, those will not go into the Official Report. I would appreciate it if people could drop us an email with those comments and we will take them on board.

I bring in Becky Duff.

Becky Duff (Carers Trust)

I will talk briefly about young carers, because that is a key issue in respect of how we overcome and break some of the poverty cycles. If we do not address that, we will be stuck in the same conversations five or 10 years down the line.

A piece of research by Carers Trust Scotland found that 66 per cent of young carers who were surveyed said that they or their families were “always” or “usually” affected by the cost of living crisis. Young carers face huge barriers to accessing further education. A lot of that is to do with the eligibility criteria for carers allowance, and we have an opportunity to change that. Young carers also face barriers to employment. In order to break those poverty cycles, therefore, it is important that they get the support and access that they need right now.


Another piece of research that we did in November 2022 highlighted that,

“58% of unpaid carers”


“ignored by the Scottish Government”.

That builds on a feeling of hopelessness—of shouting into the abyss but nothing is changing. These people have lived with huge stresses and pressures, financially and across their caring responsibilities, as they have gone through the pandemic. We all know that they have been disproportionately impacted, and, on top of that, the cost of living is having a huge impact.

In some recent research that we did on older adult unpaid carers, 87 per cent said that their mental health and wellbeing had been impacted by their unpaid caring role. These people are providing £12.8 billion-worth of caring each year in Scotland, so it is important for all of us that they get the support that they need to continue to do that.

The Convener

We will take that on board, particularly with regard to young carers.

That brings us to the end of questions on theme 1. I invite Jeremy Balfour, who joins us online, to commence questions on theme 2.

Jeremy Balfour (Lothian) (Con)

Good morning, panel—it is great to have you with us.

I will move on to look at the effectiveness of temporary cost of living assistance. We are looking at which short-term measures have the greatest impact and at what measures could be implemented in the future.

I will start with a general question. Most of the recent cost of living assistance benefits have targeted families with young children—the best start grant and the Scottish child payment, for example—and that has been welcome and right. However, are you concerned that carers, disabled people and even elderly people are being left behind? If so, what support do they require?

Stephanie Millar has her hand up, so I will bring her in.

I cannot see that, convener, so I hand back to you to chair the questions, if that is okay.

Yes—I will keep you right.

Stephanie Millar

We need to look at the fact that the cost of living payments have not been adequate. While disabled people may, depending on their circumstances, have received a range of payments as a result of cost of living increases, we are still seeing people going to food banks and, for instance, self-disconnecting from their prepayment meters.

Last month, our extra help units saw 2,500 cases of self-disconnection. That leaves people with no fuel at all to run fridges or use hoists or any other equipment that they may need. In June 2017, our units saw 26 cases. That demonstrates the scale of the problem, which is constantly increasing. As I said earlier, we need to look at a range of things. The short-term fixes are useful—the money helps—but the number of self-disconnections in March shows that it does not help for very long, nor does it help with the underlying issues.

By all means, let us have short-term help through more specifically targeted payments. However, for working-age disabled people in particular, the solutions have to come from energy, housing and energy efficiency. I go back to what Frazer Scott said. We need to look at the fuel poverty strategy and connect what we are trying to do with how the Scottish Government meets its fuel poverty targets and complies with the aims of the strategy.

There is a need for a social tariff, but if we do not think about that carefully, we could just end up in the same place, where everybody who needs it gets the same thing. Any social tariff needs to consider not only low income but higher energy use, so that it meets the needs of disabled people.

Jeremy Balfour mentioned some benefits. Under the child disability payment, there are extra heating support benefits for someone who has a disabled child. If someone is of pensionable age, there is the winter fuel payment.

However, a working-age disabled person can claim nothing to help them with additional heating payments. When a disabled child who gets a heating payment becomes a disabled adult, that payment is removed, even though their circumstances may have not changed.

It is important that we think about short-term measures, which may just be cash first. However, it is also important to start planning so that we do not need to use short term-measures: so that we come out of the energy crisis, go back to the previous situation and see that as normal. We need to start building a longer-term plan for providing disabled people with support to meet their additional costs.

Allan Faulds

On the point about short-term measures, and on what Stephanie Millar said about a cash-first approach, my notes say that it is literally as simple as putting cash in people’s hands. We need to make sure that people have the money right now to address the issues that they face in the current crisis. When we were researching our report in October, the idea of special tariffs for disabled households came up, which is something that would help.

Jeremy Balfour raised a point about some groups potentially being left behind. I do not know if folk have seen the other research; last week, a briefing by the Joseph Rowntree Foundation came out that looked at poverty rates just before the pandemic hit. That research found that, over the years, families—couples with children—were making up a smaller proportion of those in poverty than families without children or single-parent households.

Earlier in the year, abrdn published a report about the current cost of living crisis. The research found that, overall, people in Scotland tended to be in deeper poverty or in more difficult financial situations than folk across the UK as a whole. Families with children, because of the support that is targeted at child poverty, were roughly on par, but everyone else, including families without children and pensioner families, were slightly worse off.

It is important to point out, while it is very good that there has been a lot of investment in tackling child poverty, there needs to be more. This is not an either/or situation, but that is where the focus has been. We need an additional focus, though not a shift in focus, on disabled people, and we need to think beyond what the Scottish Parliament can do. Obviously there are things that the UK Government could do, such as renewing windfall taxes on energy firms; as an absolute minimum, it should reinstate the £20 uplift in universal credit.

The support that has been offered so far, as people have said, has not been adequate. Support for the least well-off households was quantified in September as having a shortfall of around £800; the £150 for disabled people has not touched the sides of that.

On prioritising preventative spending, I agree with the point that Heather Fisken and Adam Stachura made about the removal of social care charges, which has been a Government commitment. There has been a long-standing call by the ALLIANCE for those charges to be scrapped. That would put cash back in people’s hands, because if they are not spending money on social care charges, they have it available to spend on other things.

I will make a final brief point that I meant to make earlier, which is to bear in mind the human rights implications of these decisions. If people are not able to heat their homes and keep themselves at a good temperature, they could get respiratory illnesses, so they are not achieving their right to the highest attainable standard of health. Similarly, if people are not able to leave their home because they cannot afford to power their wheelchair, they are not able to realise their right to independent and equal participation in society. In the short term, we need to be aware of the human rights implications of not giving people the support that they need.

Thank you. You make some interesting points.

We move on to Heather Fisken.

Heather Fisken

Thinking about time, I am conscious that points have already been made about income maximisation, whether from benefits or perhaps from resolving longer-term issues around disability employment and pay gaps. As well as income maximisation, we have to look at not taking cash out of people’s pockets, particularly where it relates to their impairment.

I made a point earlier about scrapping outstanding arrears for social care charges and scrapping the social care tax altogether. Certainly in the short term, there could be a group on arrears collection.

Several of us have touched on the issue of reimbursement of extra energy costs for medical equipment that is used at home, which should be doable in the short term. That medical equipment will be associated with a health board, so it is traceable—it is possible to find out who is using it. Some health boards already reimburse for oxygen equipment, but not every health board does. Reimbursement should be the case, and in addition it should be promoted, as it seems that it is currently not widely promoted.

We are having a conversation about short-term solutions, but it goes without saying that many of the things for which we are asking, such as affordable, accessible housing and the scrapping of social care charges, are not new asks—we have been asking for them for years. We are not making these points for the first time. If those things had been done when they should have been, we might not be in the situation in which we find ourselves now. People are scrabbling around, trying to find short-term solutions when, in fact, the solutions have been around for a long time but have simply not been enacted.

We move on to Richard Meade.

Richard Meade

I will try to keep this brief, because I know that other people want to come in.

Unpaid carers have not got a lot of the support, such as the cost of living payment, because, as carers, they have not qualified for it. I was slightly infuriated by the suggestion in the Scottish Parliament information centre’s briefing that carers would get benefit by virtue of living in a household with somebody who was getting such benefits. That is not always the case. Carers do not always live with the person for whom they are caring, and many of them have got very little or nothing by way of extra support, which put them at huge risk of having to find other means of paying for essentials.

With regard to things that we can do, carers allowance is a benefit that is available to some carers, but it is not available to all carers, and—to be honest—it is a pittance. Even with the very welcome carers allowance supplement that is available in Scotland, it is worth only about £87 a week, which, for someone who provides care for 35 hours a week, works out at about £2.50 an hour, which is a rather shocking rate of reimbursement.

There are multiple things that we can do. Obviously, carers allowance is being looked at in Scotland, with the carer support payment being piloted later this year. We certainly called for a number of additional carers allowance supplements, but our call was not answered. Last year, to provide support for the cost of living crisis, we asked for the supplement to be doubled—that was done during the pandemic, when it was welcomed—but that has not yet happened. If that is still possible, it would certainly help.

There is another issue that I hope can be looked at in the context of the carer support payment when it comes in. For a carer who is trying to earn a living as well as care and who is dependent on carers allowance, as soon as they earn even 1p more than £139, they lose their carers allowance entitlement. Obviously, that is a disincentive to work. As wage rates have gone up, that means that a carer can work only 13 and a half hours before they lose their carers allowance entitlement. That is really unfair and it puts their ability to work at risk. Therefore, that needs to be looked at.

At least two people have mentioned the issue of service charges. Social care charges need to be removed as soon as possible. It is an outrage that they are still there. Our “State of Caring” survey showed that carers are choosing between paying for those services that they need and paying for essentials—in other words, they are going without one or the other, which is just not acceptable.

I totally agree with the sentiment that cash in hand is really important. How do we ensure that we provide that? I think that a dedicated carer cost of living fund in Scotland would be helpful in supporting carers, for the reasons that I have already mentioned, so that carers can afford heating and eating.

We know that a lot of work is being done around a minimum income guarantee in Scotland and that the idea of a pilot scheme is being considered. How about we pilot a minimum income for carers? That is certainly something that we would be interested in seeing.


Another issue that people have touched on that I think it is important to mention is the situation of those people who have increased energy costs as a result of their need to use medical equipment and to keep the heating on for longer. It is an outrage that they are expected to pay for those in the first place. On principle, we would never expect somebody at the end of their stay in hospital to be presented with a bill for the intensive care unit equipment or dialysis machine that they had been using or the heating that had been required to keep their hospital bed warm. However, we expect that burden of cost to be shifted to the home once somebody is discharged or if they live at home.

We all agree that, in general, the shift of care from acute settings to the community is great for the person who is ill—and great for the Government, because it supports more health efficiencies—but we cannot expect that burden of cost to be shifted into the community as well. That has to be looked at urgently, because families out there are paying thousands of pounds a month in energy costs because of their medical equipment. No family should be forced to choose between keeping on those machines and heating and eating.

Those things need to be addressed urgently by the Parliament, if it can do so.

The Convener

Thanks, Richard. You made some really interesting points, which we will take on board—in particular, about the burden of costs for operating such machines in the house. Thank you for that.

I bring in Ellie Wagstaff.

Ellie Wagstaff

I have a couple of points that will build on comments that have been made, including Richard Meade’s point.

As well as support for people while they are caring, support for people after a bereavement is important. Caring for somebody for a long time involves a lot of energy and a lot of emotional investment. After that person has died, their carer needs time to grieve without feeling pressured by additional financial circumstances or feeling that they need to rush back into work because they are going to run out of personal finance.

Richard Meade touched on the Scottish carer support payment that is coming in. As a few other organisations have called for, it has been suggested in the consultation that that will be paid for up to three months after the cared-for person has died. That period should be doubled to six months, because people need that time for processing their grief—to learn to live with it and to think about how they want to start to rebuild and to re-enter society. In addition, if they want to look at finding work again, they need the time, money and support to enable them to do that.

Benefits assessment under special rules in Scotland—BASRIS—forms are used when people have a terminal illness and apply for fast-track benefits under the special rules of terminal illness. A doctor or a nurse can fill out the form to state that a person has a terminal illness, to provide evidence of that person’s eligibility for certain benefits and for being fast tracked under the special rules. Certainly, when it comes to ADP and CDP, a terminally ill person receives the highest rate of disability benefits. That needs to be maintained.

There is a bit of a gap in the implementation of the BASRIS forms and a bit of a delay in processing them. We need a more rapid implementation of those forms in order to support the disability benefit roll-out and ensure that people are getting those benefits as quickly as possible.

In a wider context, if we could support that implementation, the BASRIS forms could also be used to support terminally ill people in other policy areas, such as housing. In a national context, that concerns inaccessibility, but, in a local government context, their use could support people to be fast tracked for housing adaptations, for example, or to be fast tracked through financial or non-financial support through the scheme of assistance.

Those things could be considered in the short and medium terms. However, there are also opportunities to adapt and grow existing policy—in particular, around childcare. The Scottish child payment has been increased and the Government has announced a further £15 million of funding to support free school-age childcare. To build on what Allan Faulds and others have said about preventative measures and preventative spending, those funds support families who are already on low incomes, but what if we expanded them to include the children of terminally ill parents, to prevent them from falling into that situation in the first place? For example, the child payment could be extended to terminally ill parents who have a child or children under 16, and free childcare could be extended to all school-age children of terminally ill parents. It is about thinking about preventative measures in that context as well.

There has also been a lot of discussion about medical equipment. Terminally ill people rely hugely on medical equipment and use multiple forms of equipment. Marie Curie and the University of Glasgow recently undertook some research called dying in the margins. It looks at the barriers to dying at home for terminally ill people who are in socioeconomically deprived circumstances. One of the research participants in the study was a young man with muscular dystrophy. He relies on a range of equipment—a hoist, respirator, electric wheelchair and mobility bed—and his energy bill has always been high but, in the cost of living crisis, it has skyrocketed. He told us that it is difficult because all of his stuff is electrically powered and uses a lot of electricity.

That man was offered his own place and turned it down because he knew that he would not be able to afford it. Not only is the cost of living impacting his financial circumstances but it is impacting on his wider health outcomes and his physical and mental health. Some consideration needs to be given to the wider impact on people’s health outcomes as well as their finances in such situations.

Thanks, Ellie, for sharing the story about that young man. It contextualises the wider issues that people are experiencing.

I will now bring in Morna Simpkins.

Morna Simpkins

I will not cover points that my colleagues have covered. However, the Government must provide a cost of living support package to ensure that disabled people—including people with MS—can cope with the rising cost of living in not just the short term but the long term.

I want to highlight the impact of the cost of living and the 20m rule in adult disability payment. Around one in three people with MS has had their level of PIP downgraded since the introduction of the 20m rule, 10 years ago. People with MS and other people who have a disability are still finding that their mobility component gets downgraded. That leads to them losing their car, which is a vital source of mobility for them to get to and from work and to try to live as normal a life as possible. Without that car, they have to reduce their time at their job or they are not able to work and they lose their job. That impacts on their level of poverty and has an economic impact.

One thing that could be done is the removal of the 20m rule from the ADP, which would allow people with MS to have their car and their mobility. MS is a fluctuating condition and is different for everyone. If people with MS have a car, they are able to hold down their job and contribute to Scotland’s economy.

Thanks, Morna. Those are really good comments.

I will now bring in Adam Stachura. I got your name right this time, Adam.

Adam Stachura

You did. I am grateful for that.

On Mr Balfour’s point about the effectiveness of some of the cost of living payments, it is fair to say that a lot more money went to people of state pension age than we might have anticipated from the UK Government. For those who are in receipt of pension credit, there was a decent amount of money, which was probably more than any other group received. That is balanced by the fact that those folks are already on some of the lowest incomes possible and have been for many years.

However, I flag up the number of people who just miss out on thresholds. At cost of living events put on by MSPs and MPs across Scotland, a huge number of older people have come up to me and asked, “My income is just under £10,000. Is there anything for me?” The answer, broadly speaking, is no, because they are not eligible for pension credit and cannot receive carers allowance. There is nothing else for them and they fall into a gap. However, it is not fair to say that someone whose income is of that level is living particularly well. Sometimes, such people get bad advice about where they can get help or they are not eligible for something and that puts them off for many years.

There has been good money at times, but we have also heard of people who have, in essence, been storing it up because it is short term and they do not know what is happening in the spring and the summer. Although the indications from Governments are about payments just now, everything that you hear says that energy bills and food price inflation are going up by extraordinary levels in the long term. People are asking, “What do I do in April? What do I do in May?” They will not have been using that cash injection at that moment, but instead may be spreading it out or holding it back for a really rainy day. They think that they are just coping but, by any measure, folk simply are not coping.

I will make some last points about the process of getting support to people. Huge numbers of folks either have not been using pre-payment vouchers because they have not received them and do not know where they are or they have received them but not cashed them in. There is a process issue in there somewhere.

Back at the beginning of 2022, the first cost of living payment came via the UK Government to the Scottish Government in the form of the £150 that was to go to every household in council tax bands A to D. Local authorities distributed that, but they did so in an incredible range of ways. It was not necessarily the case that the £150 came to you—it might have been spread out over the whole year or deducted from your council tax bill in the form of £10 to £15 every single month. What impact does that have when your energy bills have gone through the roof?

The issue is also about simply not trusting people to use that money. We asked all local authorities at the time how they were going to do it and they simply did not know. They did not have any kind of process and they said that it would take them nine months to give people the £150 up front. There is a structural challenge in Scotland around being able to get support to people who really need it.

Even then, that £150 was only for those in council tax bands A to D, which is so restrictive. Lots of people who need that help are beyond those levels, including those in bigger, older homes that are terribly hard to heat. As Frazer Scott said earlier, about half of the country lives in energy inefficient homes. Half of older people live in homes at energy efficiency class D and below. Every pound that they put into paying for energy gets soaked up into those walls and out through the cracks in the windows, but they are not able to effectively access the financial support, or practical support for energy efficiency measures, in Scotland that they should be able to.

Through Social Security Scotland, the Scottish Government has data on people who are on the lowest incomes, income-related benefits and social security. We have regularly asked it to use that data in order to target, at the very least as a starter, the low-hanging fruit, if you will. Those households could be targeted for home energy efficiency checks to see whether they are living in homes that are suitable for support. They would undoubtedly be eligible for schemes but, as Frazer Scott said, a lot of those schemes are now shut until the autumn—even though you fix your roof when the sun is shining, before you get into crisis next autumn and winter.

Frazer Scott

To add to what Adam Stachura said about people with pre-payment meters, we know from statistics that have been published that around 20 to 25 per cent of all the issued vouchers for pre-payment meters have gone unredeemed in households with the lowest incomes. That money was meant to help people over the winter period, which has passed. Many other households automatically received the £400 universal payment through the energy bill support scheme, yet some of the most vulnerable people in our society have to work the hardest to receive the support that they so desperately need.

It is about choices. The effectiveness of options and the options available are all about choices. We are choosing to create this complex system—this patchwork quilt—of financial support for people, rather than coming up with something that is far more effective and elegant.

If you asked me about what is good, I would say that child winter heating assistance in Scotland is a very positive thing. It is also positive that it has been uprated in the year that we are in. The Scottish child payment is also great. However, child winter heating assistance was uprated in line with inflation but not against the commodity against which it is hypothecated, which is energy. Energy costs are 250 per cent higher, not 10 per cent higher. Child winter heating assistance can therefore achieve a lot less and provide a lot less comfort for those households in the year that we are in now compared to the year in which it began.

That is also the case with many of the other financial supports that are available, such as the £150 warm home discount, which is available from a person’s energy supplier. That is a net benefit of £134, because all households pay towards it, including the most vulnerable, who pay about £16 in their energy bills in order to receive at a later date a £150 payment or discount on their energy costs. However, it buys considerably less than it did in 2019, when it was £140 but energy costs were two and half times lower. The amount of days’ comfort that payments provide has diminished dramatically.


It is all about choices. There were upratings of universal payments, whether that was people on universal credit, the disability payment of £150 or the £300 payment for older people. We created a whole raft of things, and some of that was about making choices. The universal energy bills support scheme payment of £400 was a choice. The UK Government could have decided to reduce energy costs directly further than the energy price guarantee, which has held things at that notional—fictional—£2,500, which is often referred to. It could have pulled down our unit costs more, but it chose to provide a £400 payment.

These are choices, and we need to make better choices—choices that actually reach people and create the impacts that they want. I recommend that the NHS consider expanding its remit from aids and adaptations to supporting enhanced heating and power requirements for people with essential medical needs. If we do things such as that, we will be creating a far fairer, far more open and far more automatic auto-enrolling system than the one that we have now.

I believe that we can do it. We have the powers to do much more than we have done by way of better targeting, and we should learn from the evidence that we have and just do things better.

The Convener

Thanks very much for that contribution, Frazer. I am conscious of the time, and I hope that we can have shorter and more succinct contributions on the next theme to allow everybody to come in. Steven McAvoy is next.

Steven McAvoy

My comments on the grants system are about the fact that grants tend to be hooked to a qualifying benefit at a specific point in time. If a claimant loses entitlement to that benefit or they are waiting for something to be processed, that can lead to problems with accessing the grants. A particular problem with universal credit is that it is based on a fixed calendar month period. If someone does more hours in work or they start a job in that specific month, they could lose a couple of hundred pounds in a one-off payment.

In Scotland, we have the opportunity to use council tax reduction more as a qualifying benefit, because it is a means-tested fully devolved benefit. If that could be used as a back-up option in certain cases, it would give us more leeway to avoid situations where somebody who is on a low income who might have a particular income rise for one period could lose hundreds of pounds. I have seen examples where someone has been considering taking up employment but it has been more financially beneficial for them to delay that, get a lump sum and then take up the job. Obviously, we want to avoid situations like that where possible.

Thanks, Steven. I will bring in Ruth Boyle as our final speaker on theme 2.

Ruth Boyle

I will pick up on Mr Balfour’s second question, on the focus that has been given to child poverty. Of course, we welcome the efforts that have been made with regard to child poverty targets. In the latest poverty and inequality data release, we see that that has paid off in terms of child poverty rates remaining stable. That is not something to celebrate—we should be doing better than that—but, by contrast, that data release shows that the relative poverty rate for disabled people increased. That shows why it is really important that we are broadening our focus on poverty to ensure that, as we try to build a more equal society, we are not leaving anyone behind. We are pleased that the First Minister’s anti-poverty summit next week will look at poverty in the round, and we hope that that is the beginning of an increased focus on other groups.

I agree with everything that has been said about the cash-first approach in the short term. We see some of the support that has been mentioned, such as council tax reductions or the universal £400 deduction to energy bills, but those have ultimately benefited better-off households most. We need support to be focused on getting cash into the pockets of those who have the least resource.

One of the fundamental things to think about is that the way that we make policy in Scotland means that we are not yet achieving the ambition of mainstreaming equality considerations into all policy making. Doing that is a critical starting point. We also need to embed lived experienced into policy making, because we know that, when people who are experiencing poverty or disabled people are involved in decision making that impacts their lives, we ultimately make better decisions and policy.

I will not go into every action that we want to see, because I know that we are short on time, but we need to ensure that we have a structural solution to a structural problem. That involves thinking about fair work for disabled people and thinking about employer ability—by which I mean what changes employers can make to their employment practices to make the employment more suitable for disabled people.

Energy efficiency also needs to be improved to reduce vulnerability to fuel poverty in the longer term, and our social security system needs to be strengthened.

We support the points that Richard Meade made about concentrated support for carers, as they live on some of the lowest incomes in our society. We also support the Scottish Government’s commitment to a minimum income guarantee that is disability sensitive and carer sensitive, to ensure that it meets everybody’s needs.

The Convener

That brings us to the end of theme 2. Thank you for all your contributions.

I invite Paul O’Kane to introduce theme 3. I am aware that two of our witnesses were not able to contribute previously, so I am happy for them to come in on theme 3 if they want to do so.

Paul O’Kane

I thank the witnesses for an interesting discussion so far. Under theme 3, we will try to pull together a lot of what we have been discussing. Many of the themes that we are interested in have already been touched on.

Ruth Boyle spoke about long-term structural solutions and, under this theme, we want to focus on longer-term approaches. In recent times, we have lived through national emergencies—the Covid pandemic and the cost of living crisis—so we are interested in how we can restructure and look across the board at policy interventions that could make a long-term difference in protecting people, particularly disabled people, people living with long-term conditions and unpaid carers, and in allowing them to absorb shocks when they come. The committee is also interested in your views on any implications that the design of Scottish social security benefits has for carers and disabled people.

We expect inflation to increase, and prices are still high. What are the implications of that on how Governments should support people during a cost of living crisis that is not abating any time soon?

Becky Duff

When it comes to unpaid carers, we have an opportunity to look at eligibility for the unpaid carer support payment. Adam Stachura talked about how that impacts older people, but it impacts younger carers, too. The tightness of the eligibility criteria has a huge impact on unpaid carers across their lifetime and caring journey, which feeds into the poverty cycle again and again. We have an opportunity to make the income thresholds realistic, and we have an opportunity to remove the full-time study rule in order to support young carers into study and work and to make caring not the only thing that young people can do for their entire life as they move into adulthood.

We support a minimum income guarantee for all unpaid carers, which would be an absolute game changer. We have heard that from all around the table, and it is important that that message is heard.

Suzanne Munday

I do not disagree with anything that has been said; in fact, I agree whole-heartedly with all of it. However, my plea is that everything be looked at through an equality lens, because we cannot have a one-size-fits-all approach, and we often have to dig much deeper to understand the implications of the cost of living crisis and the associated financial pressures for different groups and communities.

Alongside that, nobody has yet talked about the impact of the cost of living rise on carers and disabled people in remote rural and island communities. We recently did some research on behalf of Argyll and Bute Council. Carers there said that, although it can often be nice to live in a small village and there are a lot of positives that come with that, their ability to make more economical food choices is limited because of the lack of places to buy food. Going to a supermarket to see whether cheaper food is available there often entails a round trip of 100-plus miles to the nearest big city. They then have to factor in the availability of transport, time and petrol costs, so any saving that they might make is often eradicated by additional associated costs. It is important not to forget those communities.

I appreciate that comment. I will move swiftly on to Allan Faulds.

Allan Faulds

I will try to make a few points as quickly as possible. On longer-term solutions, quite a few people have pointed out key issues around energy efficiency and housing affordability. We identified those as issues in the long-term solutions part of our report, and perhaps others might have a bit more to say on those later.

I want to focus on social security. Some of the changes that the Scottish Government has made are welcome. The fact that it views social security explicitly and publicly as a human right is a positive development, as is the fact that there will be £1.4 billion of additional expenditure over and above what would have been expected on the basis of UK Government allocations. Does that necessarily mean that social security will be adequate? I am not convinced that it will be. There still needs to be a review of that adequacy. That builds on the point that Frazer Scott made about linking social security to the specific things that it is meant to cover.

Food price inflation has been significantly higher than the overall rate of inflation, and people are spending a lot more of their money on food than they are on things such as broadband, for example. When assessing adequacy, we need to be aware of whether we are considering things such as the higher rates of inflation for food, which is obviously the most fundamental thing. As part of that, we need to embed equalities and human rights in how we approach the entire process. A few people have already made that point.

Finally, a discussion on how we raise revenues is also needed. I know that the Scottish Government is open to that discussion. The new Government is just taking office, but it is essential to the funding of public services and social security that we have a progressive system of taxation. My colleagues might be thinking, “Oh, here goes Allan on council tax again,” but there is a specific point to be made. Adam Stachura talked about council tax and where funding has gone from that. Council tax is a tax that just desperately needs to be reformed so that it can fund local services that disabled people and unpaid carers of people with long-term conditions are much more likely to rely on. Lack of reform is a significant barrier to those services being funded, so we need to make longer-term reforms to how we raise money to fund services. That is very much in the mix of what we are thinking about.

Heather Fisken

I will try to be brief and not repeat any points, but I go back to the introduction to the question and the suggestion that we are through the pandemic. Some people are still very much living with the pandemic and are still self-shielding. That should not be forgotten. It is affecting their income and is affecting them in all kinds of ways, such as through isolation and so on.

I will address the question about actions that need to be taken by building on what Allan Faulds said about human rights-based approaches and cash. People need to be able to make their own choices about how they use money. The amount of money that is given should track inflation. If inflation goes above a certain level, updates to benefits or extra, one-off awards should track that. The statistics have to take account of the extra cost of disability—some national statistics still do not do so—because it is a very important part of people’s lives.


I have just two more points to make. First, services have to be disability competent, which, at the moment, they are not. There is so much demand for services and, as we have heard today, disabled people’s lives are incredibly complicated and multidimensional. For example, there are issues relating to the benefit system, what passport to get and blue badges, and there is then the impact if someone does not get such things. It is perhaps a hard thing to ask a volunteer in an advice centre to have all that information. They might have empathy in bucketloads, but they might not have the capacity to provide the information, support and signposting that people need.

Secondly, we have been doing some work on climate change and emergency planning. We have co-participation status in the UK Covid-19 inquiry, and one of the things that we are flagging is the complete lack of disabled people’s involvement in emergency planning, which is a human right under the Convention on the Rights of Persons with Disabilities. Disabled people were not involved in the Silver Swan and Cygnus exercises, which I think took place around 2011. General comment 7 of the UNCRPD says that states must involve disabled people and their organisations in things that concern them, which include emergency planning.

Ruth Boyle

It will be easy to be brief, because many of the comments that I was going to make have now been made. I echo what Heather Fisken and Allan Faulds have said.

One thing that we have not discussed today, which it is important to raise, is the impact of poverty-related stigma. The ALLIANCE report mentions the importance of destigmatising social security. The Poverty Alliance is the secretariat for the Scottish Parliament’s cross-party group on poverty, and Pam Duncan-Glancy, a previous member of the committee, is the convener of that group.

Earlier this year, we published a report on poverty-related stigma in Scotland, which found that it is “extensive and deep-rooted” with far-reaching implications for people’s mental health, that it erects barriers to accessing support and that it influences the design of policies that are intended to support people in escaping poverty. We concluded that tackling poverty becomes significantly harder, if not impossible, if we do not tackle poverty-related stigma.

As part of that inquiry, we received submissions from Inclusion Scotland, the ALLIANCE and Glasgow Disability Alliance, and we found that stigma has particular impacts on disabled people, particularly when they apply for benefits, because of the burden of proof that often exists and the sense that they are not being believed when applying for benefits. That was particularly true for people who had a hidden impairment and felt that the system was not conducive to their being able to access benefits.

The narratives in the media and from certain politicians around scrounging and undeserving recipients of social security have really had an impact on disabled people in relation to their sense of self and the shame that they might feel about their situation.

I direct the committee to the number of recommendations that we made in relation to tackling poverty-related stigma, such as automating benefits, investing in a programme of benefit take-up, and poverty-awareness training for people in public-facing roles. To pick up on Paul O’Kane’s question about Social Security Scotland, I note that the submissions that we received as part of that inquiry were positive about the organisation’s emphasis on human rights and dignity in the work that it does, and we urge the Scottish Government to extend that emphasis across the work of all those in public-facing roles.

Comments on stigma around poverty are hugely important, so thank you very much for bringing up that point.

Steven McAvoy

I will again refer to social security. When we assist claimants with claims for the child disability payment or the adult disability payment, we wait about four to six months for an outcome decision. Although we would rather have a good decision that takes a bit of time than a bad decision quickly, the delays are causing a couple of issues. First, there is the fact that the potentially entitled claimant does not have that income, but the delays also do not allow us to see how well the system is performing.

When the benefits were devolved, we largely copied and pasted the qualifying criteria, and there were good reasons for that. The assumption was that Social Security Scotland could just make better decisions, and I think that that is possible. A lot of the bad decisions with PIP did not relate to the criteria; they were more about the application of the criteria. The benefits have been devolved for a significant time but, because of the lack of outcome decisions, it is really difficult for welfare rights advisers like me to feed back on how things are going.

That means that we cannot feed back on how we could improve the system. It is not until we see outcome decisions and test them at appeal that we will get a full picture of how the system looks without face-to-face medicals and with improved evidence gathering. That is one of the biggest issues for us, as that needs to improve so that we can start to see outcome decisions. We will then be able to make better-informed decisions about how we can improve things.

Thank you for pointing out the delays in decisions being made. The committee can pick up on that issue.

Adam Stachura

I will rattle through three things that Scotland can do. The first is to address digital exclusion to ensure that public services are open to people, whoever they are. That does not necessarily mean making sure that everyone can be online—not everyone, particularly disabled people, is able to do that. Public services and local authorities must ensure that they have in-person face-to-face and telephone options so that folk do not miss out on information, rights and services. That must be a bigger priority.

There is absolutely a need for a national social security update campaign that looks at all benefits across the whole of the UK, irrespective of who administers them. The Scottish Government should lead that work through Social Security Scotland and others. That is a big one. We should pick up things that increase the uptake of everyone’s entitlements and should not, quite frankly, fall back on saying that it will have an impact on the fiscal framework, which it will not. In the past, Department for Work and Pensions officials have told this committee that that would not be the case, so that is absolutely necessary. We need to look at pension credit and other things, irrespective of who administers them.

The final thing is to look at age-inclusive workplaces and fair work. That should very much include carer-positive policies so that carers can be in work and fulfil all their responsibilities with flexibility and without there being an impact on their employment.

Frazer Scott

I hope that I can answer quickly. I echo the positive comments from Ruth Boyle and Allan Faulds on rights and having a much broader rights-based society. That is absolutely what we believe. We believe that we should have a right to affordable energy—ideally, affordable clean energy—a right to live in a good-quality energy-efficient home and a right to a level of income that meets our basic requirements. However, we have none of those things. We should have those things, we should have aligned policy and practice, and we should be able to hold responsible bodies to account in relation to those rights.

Unfortunately, the circumstances regarding the cost of living, high energy costs and the choices that have been made with regard to Government interventions and support will, tragically, have resulted in increases in child mortality and high numbers of avoidable deaths of people living in cold, damp homes because they were unable to heat their homes to the right level over the past winter. The same could be true next winter as high energy costs endure. We simply have to make better choices than the ones that we have made so far.

Richard Meade

I will briefly build on a couple of things that have been said. From a social security perspective, one route out of poverty is the ability to work. Many unpaid carers want to work, but they face multiple barriers to getting into work. One of them is the threshold for carers allowance. We should look at that as part of the process of reviewing carers allowance as it merges with the carer support payment. We should increase the £139 threshold and, instead of there being a cliff edge, look at a tapering system so that people can work more hours to increase their income.

As well as being a route out of poverty, work is, for many carers, part of their quality of life and identity, but they often do not get the option to work because of having to care for someone. That is a hugely important aspect of sorting out the social security system to support carers into work.

There is also an employability agenda around carers. Adam Stachura mentioned carer-positive policies. Carers Scotland runs the carer-positive accreditation scheme, which supports organisations to create carer-friendly workplaces. We have 250 organisations covering almost 500,000 employees across Scotland, but we still do not have all the big public bodies, NHS boards or local authorities. All organisations should strive to be carer positive by ensuring that their workplaces support carers who are working.

It can be incredibly difficult for carers who are not working and who might like to work, or for those whose circumstances have changed or whose caring role has come to an end, to get back into the labour market. They might have been in caring for many years, and the gap between being able to get back into work and actually getting a job is quite large. Although we have some great employability services, they might not always be able to adapt to the specific needs of carers. We need to look at our employability offering and how we can support carers back into work. That goes hand in hand with what the social security system can do to support them back into work.

Stephanie Millar will be our final speaker on theme 3.

Stephanie Millar

I will keep it brief and will not echo what anybody else has said. Although I spoke earlier about long-term solutions being crucial, we also need short-term solutions. I just want to flag up that we are almost in May and winter comes around quickly in Scotland, so short-term solutions need to be an urgent consideration.

The Convener

That is a good point.

I thank all the witnesses for their evidence. I am probably commenting on behalf of the whole committee when I say that what stood out for me was the fact that it is heartening to hear the voices of the people who are in need and need to be heard. Thank you for all your invaluable contributions. We will take them all on board. If you have not had a chance to raise something with the committee today, you are more than welcome to follow up by writing to us.

10:43 Meeting continued in private until 11:35.