Committee
Social Justice and Social Security Committee 21 March 2024
21 Mar 2024 · S6 · Social Justice and Social Security Committee
Item of business
Extra Costs of Disability
Dr Robertson
Watch on SPTV
I will talk the committee through two of the case studies from participants. I will touch on some of the consequences for their day-to-day lives while they struggle on their incomes with the particular costs that they identified they were struggling to meet. Across the sample, there were examples of participants who had to get financial support from family or friends or who were considering getting a loan because they were struggling. Energy-related debt was also mentioned by two of the participants. We included a prompt for any additional forms of support that the participants might have accessed. We wanted to find out about things aside from benefits, such as social care support. One of the participants was receiving self-directed support for 10 hours a week, but the rest of the participants were not, although two of them were using their disability benefits to pay for social care. One participant had accessed the Scottish welfare fund crisis grant one week, and another who was struggling with her energy costs had received the warm homes discount. Apart from that, no other forms of additional financial support were mentioned by any of the participants over the five weeks. The diaries reveal, on a weekly basis, how much the participants are having to plan and make adjustments to lower their spending. High costs of living in respect of 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 diary participants reflected that they were so used to having extra costs of living relating to their disability or their health conditions that, over time, they had succumbed to almost normalising those costs, which would become part of their routine and part of their weekly budget. When we did the interviews at the start of the project, quite a few of the participants said that it had become just normal to them that they had those costs that they had to manage every week. I will 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 and is in receipt of a 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 frequently had to buy shopping on her credit card because she did not have enough money left after putting aside money for energy bills. 10:30 In her week 3 diary, she gave the specific example that she and her partner had had to cut showers to every few days to preserve electricity and 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 her relationship with her partner and her family. She said that the stress exacerbated her symptoms, writing: “It is stressful and wearing and I often find myself on the edge of depression struggling to stay out of it.” The next case study from another participant illustrates the experience of accessing social care support. The participant had a physical disability at the highest rate for care and mobility and was using a big proportion of his income for social care assistance. He specifically said that he uses his PIP to hire personal assistants and that he also regularly has to use it for travel to and from work, as it can take months for him to receive his transport expenses from his employer. He recorded in all his diary entries that he had gone without basic essentials. He wrote in one diary: “It isn’t unusual to use this benefit (PIP) in half the time it should cover.” He also shared that distinguishing his additional costs was difficult, as he feels that he has normalised those costs over time. Therefore, he has adapted and has to find his own solutions due to a lack of available social care support in his local area and the lack of wider 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 not being accessible for his needs, which means that he cannot access and manage the energy in his house by himself. He shared that, as a consequence, he often has to sit in his flat wearing a hat, thermals and layers of clothes with an electric fire in winter. A big issue for him was the lack of personal assistants available in his local authority, which means that he often feels that he has to call on friends and family for support, which he said that he does not want to do. He is therefore 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 were shelved—he was not able to get support that week—so that he could have support to go to a social event instead. In week 5, he said: “I’d love to have greater personal assistant support and use it when I needed it rather than generally trying to fit in with the paid worker” and their availability. He went on: “I’d love to have access to a resource that is user led such as the service run by Glasgow Centre for Independent Living.” I will pass back to Chirsty McFadyen for some conclusions.
In the same item of business
The Convener
SNP
Our next agenda item is a presentation on the additional costs of disability in Scotland. The committee commissioned a piece of research on the topic in Marc...
Chirsty McFadyen (University of Strathclyde)
Thank you very much for having us. I will start and then pass over to Laura Robertson to talk about some of our work. For context, I should say that I have ...
Dr Laura Robertson (The Poverty Alliance)
I will give the committee a bit of context about the diaries. As Chirsty McFadyen mentioned, the diaries looked specifically at needs that were not being met...
Chirsty McFadyen
I will talk a bit more about how we have broken down the data. First, on additional spending for those with more severe disabilities, we see similar results ...
Dr Robertson
I will talk the committee through two of the case studies from participants. I will touch on some of the consequences for their day-to-day lives while they s...
Chirsty McFadyen
I will conclude by saying that data on spending from the living costs and food survey shows that disabled households in Scotland spend slightly more in essen...
The Convener
SNP
I apologise, because I introduced you as Christy when your name is actually Chirsty. My humble apologies to you, Chirsty. The research that you have given ...
Chirsty McFadyen
One of the main things that I spoke about is the point that, if we want an evidence-driven policy approach, we need more evidence. Some surveys in Scotland, ...
The Convener
SNP
Dr Robertson, would you like to comment on that?
Dr Robertson
We already referenced other qualitative research from the Glasgow Disability Alliance. Inclusion Scotland also published research last year on the impacts of...
The Convener
SNP
That is helpful. I will open questions up to committee members.
Marie McNair
SNP
Thanks for your time this morning. In your conclusion, you have recommended that careful consideration be given to “how to measure additional costs of disab...
Chirsty McFadyen
Yes, definitely. We have done some work on learning disabilities at the Fraser of Allander Institute, and some of the work that we have done on data has been...
Marie McNair
SNP
That would be great. Thank you.
Jeremy Balfour
Con
It is helpful to read this report in the light of the other report that the Fraser of Allander Institute did recently on disability and employment. The repor...
Chirsty McFadyen
That comes back to the commitment to evidence-based policy making. We have done a short-term study, but more work could be done to understand the issue bette...
Dr Robertson
From the Poverty Alliance’s perspective, outside this research that we have been doing, we would call for an increase in incomes for people with a disability...
Jeremy Balfour
Con
I suppose that that is the issue that I am trying to work out, Dr Robertson. Personally, I probably fall into income group 5, but if you increase adult disab...
Dr Robertson
Yes. The example that was discussed in the previous evidence session was the Scottish child payment and the learning from that. That is a passported benefit ...
John Mason
SNP
I was struck by figure 1 on page 4 of our briefing, which showed that transport costs, in particular, were quite starkly different, which follows on from Jer...
Chirsty McFadyen
I think that it is a combination of things. The first thing that stands out to me is that we have UK-level evidence that disabled people travel less than non...
John Mason
SNP
So, 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 Govern...
Jeremy Balfour
Con
The Fraser of Allander Institute. Laughter.
Chirsty McFadyen
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 a survey is well designed a...
John Mason
SNP
You said that there is a split between whether people’s activities are affected a lot or a little. Is that too basic? Do we need to go into a lot more detail...
Chirsty McFadyen
Based on the data that we have, we should not be splitting things any further, because it is already very difficult to understand. Jeremy Balfour mentioned s...
John Mason
SNP
Did you want to come in, Dr Robertson? Most of my questions were aimed at Ms McFadyen.
Dr Robertson
No. Chirsty is the expert on the questions that you asked.
The Convener
SNP
Chirsty, I believe that Jeremy Balfour was offering up your services again for further research. I now invite Bob Doris to come in.
Bob Doris
SNP
Thank you, convener, and thank you, Mr Balfour, for the namecheck. In the earlier session, I suggested an imaginary extra £10 million. It has doubled in the ...