Social Security experience panels: carer benefits - main report

Outlines the Social Security experience panel's views expressed in a survey to help design carer benefits in Scotland.

Experience of receiving Carer's Allowance

Respondents were asked about their overall experience of Carer Allowance. Six in ten respondents (60 per cent) felt their experience was 'very good' (22 per cent) or 'good' (38 per cent). One in ten respondents (10 per cent) said that their experience was 'bad' (eight per cent) or 'very bad' (two per cent).

Table 15: Experience of Carer's Allowance (n=241)
Experience %
Very good 22
Good 38
Neither good or bad 29
Bad 8
Very bad 2

Low payment amount

While many respondents said that the application was straightforward, many also expressed the view that the amount given for Carer's Allowance is too low.

"It's an allowance in name only. We're on duty 24/7, not 9 till 5".

Respondents said that even with Carer's Allowance, they still had to find different avenues to get money for necessities such as food, gas or rent.

"My big problem with it is that it just doesn't provide much to live on, even with my mum's disability benefits taken into account. We've had to borrow a lot of money from friends and family recently - not for luxuries, but to make sure we can top up the gas or get food enough to last us until we get money in".

"While the money is helpful, it's not enough to survive on or even make rent".

Respondents pointed out that for the amount of hours required to receive the benefit, the payment is lower than someone working minimum wage. Some also highlighted that in reality, many carers work many more hours than this, and indeed some are effectively "on call" at all times.

"I was working it out recently, and even combining my Carer's Allowance, my Income Support (as I'm a full-time carer) and the Scottish Government's CA Supplement, I still only get less than half what minimum wage would be in my age bracket".

Some respondents also highlighted how gaps in Carer's Allowance payments (for example if the person that is cared for is in hospital) can lead to shortfalls in income which are difficult to manage, particularly in what can already be a stressful time.

"When my son is in hospital for more than 4 weeks I lose carers and am made to sign on and look for work, it's a difficult enough time without going through this and no sympathy for what is going on. Again when you re apply it takes even longer to receive the benefit back."

Similarly, people who have cared for more than one person experienced issues if the person named on their Carer's Allowance application dies, and they need to reapply for to continue to receive Carer's Allowance for the other person they care for.

"I had been my Dad's carer for ten years, he died, so I had to reapply to be my Mum's carer. 11 weeks of no income what's so ever, housing benefit suspend - with my current housing association sending me weekly eviction notices despite me writing to them beforehand telling them of the situation and that I would not get a decision for at least 10 weeks."

Working or studying while caring

Most of the respondents said that the eligibility requirements for Carer's Allowance are unfair if they work part time.

"Carer's Allowance is far too inflexible. It makes trying to work a nightmare, as if one earns a single pound over the limit, the entire week is voided. It should be based on hours and allow someone to work 16 hours so as to be able to access tax credits".

Respondents said that Carer's Allowance should not be affected by their work as many carers fulfil the criteria for hours spent caring even when working (particularly part time workers). Some also argued that they should not be limited to how much they earn and that this earnings cap may be effectively trapping people in low-wage jobs.

"Carer's Allowance should be paid regardless of income. The care I give my child is the same whether I earn minimum wage or not. I have been penalised because I earn more an hour, not because I work more. I work between school hours but my job is well paid so doesn't seem quite fair! Carer's Allowance should not be means tested and certainly not because I have a good job".

Respondents also highlighted that it was confusing and a significant administrative burden to have to update DWP with their hours worked and earnings, and calculate whether that will stop their payments in a given month. In particular, this was seen as burdensome when their income surpassed the threshold by very small amounts.

It was also pointed out that a carer may be the only person in a household with the ability to work, and may have the responsibility of supporting the household with those earnings, whilst also providing care.

"Many carers have no choice but to work as they are supporting more than themselves - either another disabled adult or a disabled child. Their caring responsibilities do not stop because they are working a few hours every week. It unfairly penalises people on low incomes."

Respondents felt it was unfair that people cannot receive Carer's Allowance if they are undertaking further or higher education.

Carer's Allowance is pitiful and restrictive. As a full time carer I cannot even take a night class even just for my mental health. Distance learning for pleasure only applies if it is not worth credits. It takes away the ability to be normal in society and seems nonsensical. It is discriminatory. I feel my rights have been taken away and my access to lifelong learning is denied to me.

"I am going to university next year. I will be at university only a few days a week although because of this I will lose my Carer's Allowance. My caring duties don't stop. I don't stop becoming a Carer when I am at university. I think it's unfair that I can no longer receive the extra help and support. I have [multiple] children that are disabled".

Carer's Allowance beyond pension age

A few respondents said that Carer's Allowance should not stop when carers reach pension age, as caring responsibility continues on. Respondents described having to rely on their own pension to look after the person they care for. Respondents said they feel demoralised with Carer's Allowance stopping at pension age.

"I'd like to see the carer's benefit extending to as long as the person you are caring for is still alive and you are still doing the caring required. This stopping at pension age is a joke".

"Often carers don't know Carer's Allowance stops with payment of state pension even though caring role continues. It is confusing and feels as if you are being undermined".

Impact on other benefits

Some respondents said that it was hard to understand the impact that receiving Carer's Allowance could have on other benefits that you are eligible for. They felt it was unfair that if you receive Carer's Allowance other benefits could be reduced, so the benefit payment become negligible.

"I was shocked when my income support was reduced £ for £ ie cancelling out carers allowance. That seems quite wrong, given the amount of energy and time spent caring."

"The knock on effect on other benefits was confusing. My income support has been reduced as a result of Carers Allowance, so instead of a benefit that is additional to my income, it has only increased money coming in by a small amount as most of it is clawed back via Income support."

Eligibility criteria

Some respondents commented that the eligibility criteria related to the number of hours of caring are too restrictive. For example, if a person cares for more than one person they wouldn't be eligible if their caring hours for each person individually were lower than 30 hours, even where their total number of hours caring exceeds the threshold.

Similarly if two people share a caring role, they cannot both apply for Carer's Allowance, even if both care for more than 30 hours per week. Respondents felt these restrictions were prohibitive.

"what about two carers who share caring equally and both care for (say) 24 hours each - or a single carer caring for two disabled people e.g. parents, neither of whom quite meets the higher dependence threshold? Thats where the attendance allowance: paid to the disabled person, is in some ways fairer."



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