Social Security Experience Panels - Scottish Carer's Assistance: main report

4. Further views on the Scottish Carer's Assistance proposals

4.1. General views on SCA proposals

Some survey respondents and interview participants gave positive feedback to the proposals. They mentioned that they made them feel valued, recognised and respected. Some mentioned that the SCA proposals were an improvement in comparison to what the DWP provides to carers. A few highlighted the negative interactions they had experienced with DWP.

"Thank you for listening and considering much better ideas than the DWP. Carers are treated abysmally by the DWP and deliberately kept in poverty. I'm so glad you're not going down this route." (survey respondent)

"I can't wait for it to be all handled by SSS, and not be with DWP anymore. You always get the feeling DWP thinks you are a criminal first, and you have to prove to them you are not. Social security Scotland always treat you as a human being, and a valid one at that. Thank you." (survey respondent)

"I feel extremely grateful that the Scottish Government is taking over this benefit, and that they are considering all these changes, most of which will make a big difference. If the carers earned more for their efforts, could earn more on top and not lose their benefits as soon as they go over their amount for a week; it would be a much better system. Thank you for overhauling it!" (survey respondent)

However, many survey respondents noted the experiences of carers with underlying entitlements and how unfair they felt it was that they are not eligible for the changes proposed. They highlighted they do not have access to carers benefits, supplements, concessions and discounts.

"Nothing will change as to treat carers fairly will cost too much so we have to just get on with it and struggle. Carers with underlying entitlements get screwed over by the [Carer's Allowance] Supplement as it would have been too much work and would have require the DWP to work with you so we get nothing, not even the COVID top-ups. We can't get any discount cards like carers working for local councils or care homes." (survey respondent)

"Please make it fair to ALL unpaid carers, carers doing a vital role for people who need cared for. DO NOT introduce discrimination and unfair and unequal system. That's SO wrong in this day and age." (survey respondent)

"It's highly unfair that those who have underlying claims for carers, totally miss out on supplements etc., talk about 3rd class carers!" (survey respondent)

A few survey respondents stressed the importance of widely advertising Scottish Carer's Assistance proposals and their rules. They mentioned many carers do not take up some benefits because they are not aware of them or their eligibility.

"Let people know it is available. Carers often miss out as they are not aware there is a benefit. I missed out for a long time, until advised by council's welfare reform team." (survey respondent)

"It must be more widely advertised and simpler to understand if you qualify. Many don't go near a carers centre because it is mostly for older people." (survey respondent)

A small number of respondents suggested that the process to notify a carer's change of circumstances and change of carers benefits should be simplified. They also noted that clear information and simplified processes regarding these benefit changes, their new rules and their eligibility criteria should be put in place.

"Just a plea to make the transition as seamless and admin free as possible. So many carers have had a tough couple of years and are already inundated with paperwork, appointments and reviews for the person they care for." (survey respondent)

"Please make sure as much as possible that changes in circumstances where a person will continue to be entitled to claim (but perhaps caring for a different person) won't lead to other benefits being ended in the meantime. Currently, this can mean being moved off legacy benefits onto new benefits which might make you worse off or leave you with a big gap and no money." (survey respondent)

4.2. Effects of SCA proposals on different groups

Older carers

Many survey respondents and interview participants held negative views on how carers of state pension age would not eligible of the changes proposed as part of the Scottish Carer's Assistance. Some older carers were also critical of not currently receiving Carer's Allowance.

"I'm over 70 and retired. My caring role is 24 hours per day, 7 days per week and 52 weeks per year. The proposed new allowance will not assist me in any way. As a full-time carer, I believe I am being ignored by a system that seems to have been formed and perpetuated by an erroneous view that a state pension is a benefit paid for the same reason as Carer's Allowance." (survey respondent)

"I'll be a pensioner by the time my son is classed as an adult, that means in effect I'm not eligible because I'm of pension age, that's not fair. It seems quite discriminatory and unfair, targeted against in effect, 'we don't want carers over pension age', you're suitable up to that age, but now you're not." (interview participant)

"As a pensioner, worker and carer I think we need to address the elephant in the room: many of us feel that this age discrimination is the worst aspect of carers support, and it is potentially illegal." (survey respondent)

A few survey respondents mentioned feeling undervalued and left behind by the proposed changes. They thought it was not appropriate to lose eligibility after certain age if the caring role was still performed. A handful of respondents highlighted that the caring work gets even harder when becoming an older carer.

"Ageing carers who reach state pension age and Carer's Allowance is stopped and are still caring is totally unjustifiable and immoral in all ways. We are still caring and it is harder. Being undervalued is an understatement." (survey respondent)

"There are days I have been broken. I have driven off and cried in a lay-by to just be away from demands and needs. I have wept and not slept well for a week because it all gets too much but at the end of the day, as a critical carer, I get on with it or he dies but I get no allowance as I have a pension, the same pension my neighbours have; but are not caring for anyone. The pension which is not a full pension because I had to give up work early and no one told me about Carer's Allowance. As we get older and more infirm, it is harder to care." (survey respondent)

"I don't feel the changes suggested go far enough to support hard working carers, there is no mention of carers who reach retirement age and care for their loved ones often at breaking point due to their own poor health and age, they feel abandoned by the system that refuses to acknowledge them and support them in their caring roles, this was more evident when the Carer's Supplement was introduced. It seems fruitless to overhaul a benefit only to replace it with almost the same, the changes being considered do not go far enough to keep carers out of poverty and hardship, giving them the energy and strength to do their roles which they have selflessly taken on board." (survey respondent)

A small number of interview participants highlighted the age difference of carers and the impact on the methods of communication used for application processes and information of carer benefits. They mentioned the limited use of online sources and services by older carers.

"Older people's access to applications is also limited. Their use of online services is limited […] younger generations can access stuff online but the older generation are less likely." (interview participant)

Children and young people

A few interview participants mentioned that the proposals and plans around Scottish Carer's Assistance will improve children's rights and wellbeing for young carers and also for carers who have children. They mentioned that young carers also need further wellbeing support.

"I think young carers need a lot more help from the mental health side." (interview participant)

"I have worked with young carers in the islands. They are providing care and should be able to be children. Providing extra help can let them get a break." (interview participant)

Carers from ethnic minority or religious groups

A few interview participants mentioned that carers from ethnic minorities and different religions can be impacted differently by the SCA proposals because of cultural differences, ideas about what constitutes being a carer and language barriers. They also mentioned that these communities may not contact social security services unless they are in very challenging financial difficulties. An interview participant suggested providing information about the SCA proposals in multiple languages to reach different communities.

"Ethnic minority communities don't identify with a lot of things or they don't understand. If English is not your first language, then it's really difficult for applications, etc. They will stay away from the system if they can keep themselves afloat." (interview participant)

"Certain ethnic groups or religions will rarely come forward to claim benefits because it's in their culture [not to]. I did some work with Indian communities and found it's in their culture to want to support each other and they are very closed, therefore they won't apply for benefits or they won't approach agencies." (interview participant)

Household or family make-up

An interview participant noted the different circumstances of carers who are single and do not have a support network to help them with their caring role.

"I think you should look at the circumstances of the carer. I am single. I have no support from anybody else. I am the sole support for the people I cared for. Therefore, the burden on me, mentally, physically and financially in making sure my carees were looked after properly, was astronomical. Whereas if somebody is married and they are caring for someone in their own home that is so much easier! Because they have got someone else going out and earning money and they can have that luxury of being the carer and getting loads of extra money for caring for someone. And so I think you need to look at if someone is a single person, not married and is providing that level of care, they need to have greater consideration than someone who is married, and has a partner, and has that level of financial support…" (interview participant)

Income level

Some interview participants thought the SCA proposals have an impact of reducing inequality by giving extra financial payments through extending Carer's Allowance eligibility and also by allowing carers to study full-time if they want to do so. However, a few participants highlighted that the eligibility criteria are still restrictive to many carers, including those who earn above the earning threshold or work on a full-time basis.

"It would reduce it slightly. But there are still people who will be penalised because they will have to work and they have to earn a certain amount to pay their own living expense and they will still be penalised and expected to drive themselves into the ground because they don't get any support and I do think that the fairer way would be to pay everybody, regardless of how many hours per week, because they are caring. And give them a living wage for that caring time. But obviously that would bankrupt the government completely because they've been getting away with treating us like rubbish for the last 40 years; but in an ideal world we should be compensated, however long we spend caring, and we should be compensated at a reasonable wage." (interview participant)

"I think what happens with Carer's Allowance, it just makes massive divisions between different types of carers. If we changed the eligibility, it would help." (interview participant)

Disabled carers

A small number of interview participants and survey respondents stressed concerns about different circumstances which may impact on a carer's eligibility for SCA. These included disabled carers who live together and care for each other, carers who care for multiple people, and carers who also need care due to their long-term conditions or disabilities.

"I'm one of the ones that falls into the gaps, because often the main carer is needing care themselves. And if you have good networks things go well, but things can fall through. Our social security system needs to go further. But right now none of us are entitled to claim anything apart from Young Carers […] The system actually does not help. It doesn't work for us […] it's actually all relevant, because I'm a disabled person who is caring, but if I get a carer, more gets taken off me. And the kids are having to do things that they shouldn't have to be doing at 16 and 17…" (interview participant)

"…a disability limits what I can do, but I would be concerned that if I was getting SCA, DWP would think that I then don't deserve my other benefit 'if she's well enough to do that caring then'. The DWP can be arsy about it. [Social Security Scotland and SCA should] not assume that just because you can care for somebody you don't need to be cared for yourself […] we should have a universal income. It would improve life expectancy and wellbeing. I mention it every time I can. (interview participant)

"I am penalised as is my partner for our ill health pension and our Employment and Support [Allowance] payment, so we get nothing for caring for each other which is saving a care package payment for each of us and special housing, it is all wrong." (Survey respondent)

4.3. Impact on rural and island communities

Many interview participants highlighted the impact of the SCA proposals on carers who are located in rural and island communities. They mentioned the extra travel costs those carers have because the various key services they need are not near where they live.

"I mean, it's difficult to quantify it at the moment. Definitely regionally, especially in remote and rural areas. Extra costs going to the nearest hospital [...] Additional cost, transport costs. Still got areas in island communities where you can't get online to apply, elderly people may not have smart phones." (interview participant)

"I think the rural living community stuff can be impacted for cost and stuff because I can't tell you how much we have spent on petrol taking my son to hospital. We have done 2 trips to [city], 2 trips to [city] […] If we were living in the middle of Edinburgh 5 minutes from [Hospital], having all the great support you know that would be a different cost case. We do 70-80 miles round trip for hospital, we had to buy a wheelchair adapted vehicle, we had to buy it ourselves, we got the motability bit, but yeah it's so specific to everybody's situation." (interview participant)

A small number of interview participants noted the lack of means of transport, including infrequent buses, in rural and remote areas. They mentioned how, in some cases, they need to plan their trip to nearby cities to have access to services in advance. They also mentioned the longer time they spent to get into those services compared to carers who live in cities or near them.

"My mum has offered to take me to many clubs, but I'm like 'yeh, you might be tired', but then it's annoying getting the bus and it costs money […] especially when you have to plan everything; maybe weeks upon weeks in advance, like if we want to get to [city], we would have to plan the week before, and days before about how we get there and back." (interview participant)

A few interview participants highlighted the lack of carers groups/networks and various services for carers and the cared for people in rural and remote areas. They also said that the caring work can be even more isolating in island communities than cities.

"The services that people use in more rural areas. In my local authority we don't have access to special schools. This is where you find out a lot of information, but we don't have access to that." (interview participant)

A small number of interview participants suggested giving an added payment to carers who live in rural and remote locations as a result of the financial impact of not living near basic and key services.

"But one thing that I think every Government, and I think whether it's the Scottish Government or the English Government have failed on, is people in rural areas. Because caring for someone in rural areas costs a heck of a lot more than caring for someone in a town. I think for people in rural and remote locations should get an additional supplement because of the cost of travelling everywhere to do their caring." (interview participant)

"I think maybe in an island community; employment isn't so great. If you are working in tourism or retail, or farming, crafting, whatever. To help people out there should be some kind of payment. I imagine if you are a carer on an island community it would be very isolating. Caring is isolating anyway, wherever you are. But maybe more so if you are on an island because you have a reduction in support. To have some kind of financial award would be kinda helpful I think." (interview participant)

4.4. General views on caring work and payments for carers

Common themes concerning caring work and payments for carers were emphasised across the SCA proposals by several survey respondents and interview participants.

Many survey respondents and interview participants perceived their caring work as replacing the caring work that public services should be carrying out. As a result, they stressed the importance of recognising and valuing their work as unpaid carers. A few respondents and participants felt their caring role is still undervalued.

"…that's what's important. It's people being recognised that unpaid carers are valuable. It saves billions of pounds a year. We can't get care staff, we need to rely on unpaid carers. […] I do think if people are doing that then where there are not statutory services people do need to be getting that recognition and the support they need [...] And I don't think there is enough recognition for unpaid carers." (interview participant)

"I think that the carer role is a vital one to society. Many people do it through a sense of family obligation. Regardless, this results in a cost saving to the government and the taxpayers. The Social Care system would simply collapse if it weren't for carers. I think the Scottish Government approach is more humane and fair in comparison to UK Governments to date, but I'd ask that you consider the cost/saving balance and set Carer's Assistance at a realistic level and be as generous as budgets will allow." (survey respondent)

Along the same lines, many respondents and participants stated that their unpaid caring work saves governments and public services a vast amount of money. A few provided details of how much money they had calculated the public purse was saving as a result of them providing care to their loved ones.

"Personally, I think you should pay carers whether they work or not, as caring is a vital job. The only reason I am having to be a carer is because the local authority does not have the resources to provide the care. I need care myself, but I am way down the list and I am suffering physically and mentally. If the councils had the resources then I would not be a carer, and I would become a caree. The councils would then have to pay a 'professional' carer. Non-professional carers often do far more than a professional carer, and really they should be paid for all the time they are doing this role as it is still a job, however many hours it takes." (survey respondent)

"I've sat down and worked out if the government paid minimum wage for someone to look after my son at £10.90 an hour, for 24-hour care. They wouldn't pay someone £10.90 as they'd need a band 5 staff nurse for health and safety reasons. That's £261.60 for 24 hours and 7 days a week is £1831.20 a week. Multiply this by 52, that's £95,220.40 bare minimum cost if I were to say that I couldn't do this anymore. Then, he would need residential facility, you'd need NI and pension contributions, then holiday pay and cover. If they paid me £30,000 I'd be quiet and wouldn't ask for holiday pay! And you'd need occupational therapists, specialist feeding staff, incontinence staff, all that additional stuff. This is what it would cost for 1 year to look after my son, and his needs aren't massively complex." (interview participant)

Many survey respondents and interview participants stressed that the current value of Carer's Allowance payments is too low and does not cover the costs of living.

"Carers are paid a ridiculously low amount of money for the role that they perform. Carers do not even receive £10 per day in benefits, I would love to see those in government try to live on less than £10 per day. We save the government hundreds of thousands of pounds annually on care costs and yet we are the lowest paid of all the state benefits. Why? The work that we do on a daily basis is one of the most stressful and all-consuming jobs that it is possible to have with most of us not having the choice to do anything else […] even if you doubled Carer's Allowance which you won't the amount would still not reflect what we have to do for the frugal amount that carers receive! Hang your heads in shame!" (survey respondent)

"There would be no need for this award if the CA was paid at a reasonable amount, a cost of living amount. Carers give up employment to care and lose a vast amount of their income, for example if I earn £600 per week and have to give up this job to care for my loved one, I can get £67.60 per week topped up with UC to the value of £324.84 per month and a carer premium of £163.73 per month, baring in mind the CA is then deducted so my new monthly income will be £488.57 a big drop from from £2400 i was once earning. From this miserly sum I would have to pay housing costs, energy costs, food and clothing. This is why Carers suffer poor health, anxiety and deprivation, forced into a damaging lifestyle." (survey respondent)

Many survey respondents and interview participants requested to be paid minimum or real living wage that covers a basic standard of living. Some suggested they should be paid a similar payment to that of professional carers.

"Carers get the rough end of the stick all the time and let down continually […] it doesn't even equate to the minimum wage, so they should, still get compensation even if there is assistance going through to the caree […] I personally think carers should be paid for how long they work, so even if they're caring for 10 hours a week, you should get minimum wage for that. Because if someone was paid to do it, then they would get paid minimum wage so what do we get left out?" (interview participant)

"Make it realistic and fair. Pay carers for the hours they care for by way of a living hourly wage. Carer's Allowance payment must not be discriminatory and based on capped earnings, but base it how many hours the cared for individual is receiving." (survey respondent)

"…somewhere along the line you also need to make it a wage, because you can't say if you're not working, you're caring, so you're expected to live off less. I worry for people who have less and less time to even live. A lot of families suffer. People expect too much from us." (interview participant)