A look at benefits support for carers that too often goes unclaimed. In Part 1 we look at some reasons why carers miss out and confusions between caring and having your own health issues. We look at the basic Carer’s Allowance and improvements occurring in Scotland, how it relates to “disability benefits” the person you may be supporting receives, what you can do while you are waiting for e.g. disability benefits to be sorted pro and how Carers ’Allowance relates to other non-means tested earnings replacement benefits
This blog was inspired by National Carer’s Week as covered in a separate blog – see in the links below. Carers UK estimate there are some 6.5 million carers across the UK with another 6,000 new carers picking up that rewarding, tiring and frustrating challenge every week.
Sometimes caring can start in response to a sudden change, such as a cancer diagnosis. Other times it’s a more gradual extension of that everyday support and looking out for each other as when say old age creeps up but not alone. As one couple I visited once put it good humouredly “We’ve got one pair of legs and one pair of eyes between us”.
I offer a warm welcome to all carers coming to this site and to Maggie’s centres. Please never think that you might ever be “taking away” time from people with a cancer diagnosis, for you are riding that cancer roller coaster too. Of course, it’s very different being the carer rather than the patient; but not necessarily always easier.
Caring can also be quite isolating, so the online community and Maggie’s centres across the land are as much spaces for carers to both support and supported by each other, as for people living with a cancer diagnosis. And if you feel reluctant at asking for support for yourself, do it for the person you care for. After all, if you were to collapse under the weight of it all, it wouldn’t do them much good.
A carer’s “price is precious beyond rubies”, but the accountants have had a go at costing it. Carers UK and the University of Leeds compared the hourly total costs of home care back in 2011. At that time the overall £18 an hour cost for home care (which by the way is far more than their wages) when multiplied out comes to £119 billion a year, as much as the total cost of the NHS.
Or put another way 35 hours of home care a week would cost social services £630 a week to provide, even if the Home Carer doing the work might only be being paid the minimum wage of £7.83 an hour (£274.05 for 35 hours) or the real living wage of £8.75 – outside London/£10.20 in - (which makes those 35 hours £306.25 / £357.00). But please remember for carer's benefits you don't have to be putting in those hours of active full-on caring, even if many are - caring also includes just being around and being there for the person you help.
Carers UK also estimate that while some 8 out of 10 carers experience financial difficulties because of caring – both extra costs and sometimes reduced income – some 300,000 carers don’t claim Carer’s Allowance, missing out on over £1 billion a year’s worth of benefit
My own contact with carer’s and benefits, often comes because it’s the carer - doing their amazing support thing - who is asking after the benefits for the person they care for. I will though explore and encourage people to claim the carer’s benefits they so richly deserve as well. Again, it’s not just for the carer – whose love and help are freely given – but because to a greater or lesser degree you and the person you care for may be financially linked, and especially if you are partner’s living out of the same pot. Those unclaimed benefits could then help the both of you. I am clearly shameless in using carer’s guilt – of which I know a little – to twist your arm into claiming what is so rightfully yours …
This blog, then run through benefits for carers as they stand now with later parts looking at extra means tested support , times when it may be better not to claim, benefits issues when a carer also has health issues of their own , other help for carers and some changes ahead and differences as the Universal Credit begins to have more impact.
Of Carers and Disability Benefits
In administrative terms, the DWP, put the “disability” and the “carers” benefits together under the same Disability and Carers Service (which was then merged now merged with the Pensions Service). The disability and carers link makes sense as the two groups of benefits are closely linked – in DWP terms. In Scotland both disability and carers benefits are in the process of being devolved to the Scottish Government and the administration switching to the Social Security Scotland, with some positive changes ahead.
But there is a common confusion between “disability” benefits for the extra costs of living with a long-term illness or disability paid to the person who is unwell and “carer’s” benefits to help provide a basic income for carers (e.g. if they have to take time out from or cut down on earnings).
To clarify then:
- a Centre visitor with cancer might well claim Personal Independence Payment (PIP) or Attendance Allowance (AA) as their extra “disability” benefit, on top of other benefits that provide a basic income to live on. Some will still be on Disability Living Allowance (DLA) which PIP is in the process of replacing for working age claims.
- a Centre Visitor who is a carer might claim Carer’s Allowance (CA) to give them – or to supplement – a basic income. It’s not just the income though that is important, but also the “status” of being a carer within the benefits system.
Both sets of benefits interact with each other (the person you care for has to be on the right disability benefit for you to claim as a carer). Both groups of benefit can also trigger extra entitlements within other benefits.
Benefits for carers then, can be both one of the simplest – no means test, no national insurance contributions, no detailed assessment of the care you provide – but also one of the most complicated in how they interact with the means tested system. In some cases, it is even better not to claim as a carer ! That said, please don’t give up on the idea of claiming as a carer, it's more a suggestion to get advice if you are left in any doubt as to whether it is best to proceed or not.
People are complicated and not to be pigeon holed. With so many labels and roles flying about, carers can neglect their own health problems too, whether there before you started being a carer or brought on by the physical and emotional demands of caring. So, it can be that you can be entitled both to a disability benefit for your own health problems and to a carer’s benefit for looking after each someone else.
Gone are the days when disabled people are only meant to sit quietly in the corner with a rug over their knees to be pitied or patronised. Many people with long term illnesses and disabilities pay a vital role in our communities: as volunteers, carers, mentors, givers and receivers of support and hugs
Disability v. sickness benefits
AA, DLA and PIP for example often get confused with benefits for “sickness” when too unwell to work normally, such as Employment and Support Allowance (ESA). The "disability" benefits and "sickness" benefits are both health related, but are paid for very different purposes :
- "sickness benefits" - such as ESA - are there to give a basic income when you unable to work normally. That does not mean totally incapable of work, as the phrase used is “limited capability for work". Indeed as part of encouraging steps back to work as you recover, then ESA allows you to do some "permitted work" - paid or voluntary - without affecting your benefit.
- "Disability benefits" disability benefits are not about whether the person can work or not; many may be getting these with a "sickness benefit" but some 21% of claimants are in full time work and many others could claim a "disability benefit" without being entitled to a "sickness" one. Rather the aim of disability benefits is to offer extra income - on top of any other benefits, earnings or other income - to help with the additional costs of daily living activities or getting around caused by a long term health issue or disability .
So, a lot of people living with cancer, with eyes set on say a return to work, as soon as the main chemo effects have worn off, can wrongly rule themselves out from claiming a disability benefit like Personal Independence Payment (PIP). They hope to be back in work well within the 9 months ahead that PIP is considering as "long term", and certainly be over the worst of it. But PIP can also take into account those less dramatic difficulties from “late effects” , so someone may still be entitled – perhaps at a lower amount – well into recovery. PIP – and ESA for that matter – can be valuable bridges back into work, as your earnings potential may be limited for a while by any “late effects” being experienced. that you might be experiencing.
And if someone does wrongly rules themselves out of PIP (or another disability benefit), they are also ruling a carer out from receiving Carers Allowance.
You can be both give care and support and receive it at the same time
By the same token, many carers getting Carers Allowance wrongly rule themselves out from claiming a “disability” benefit related to their own health difficulties. Or if already getting a disability benefit, wonder if claiming as a carer will mean their disability benefit gets questioned or would be taken away. It won’t .
Historically, the DWP has recognised there is a very real difference between “sickness”, “disability” and “carer’s” benefits; it is possible for the same person to qualify for all three at the same time. Caring can involve times of full-on activity - a bit like for a social services Home Carer – but also times of encouraging, reminding, chatting and just being there for someone. So, you can be a carer whilst at the same time not being well enough for full time work and/or despite having some care needs of your own. Often, I have met older couples, both with their individual health issues, but who play to their strengths and work as a team; both could be getting “disability” benefits, while at the same time, each could be carer for the other.
Unfortunately, some DWP staff get a bit stuck on the notion that are either one thing or the other - a sort of active fully fit carer or a passive sisabled person unable to do much at all - but with patient explanation you can hear the penny drop; the benefits system allows for you to be a bit of both. However, whether by accident or design, the new Universal Credit (UC) has forgotten the complexities and realities of life which means both some cuts and some rather byzantine tangles when UC an reality meet.
Carer’s Allowance
This is the basic seemingly straightforward benefit to give carers a basic income. One upon a time it was known as Invalid Care Allowance (ICA). And in its early days back in the 1970s, ICA was only payable to men rather than women. For women were assumed to be ready to take up the caring challenge “as part of their normal domestic duties” and if an income was given up it was only a secondary “pin money” one, so didn’t need protection!! Things have long since moved on …
Who can claim Carer’s Allowance?
Since that time both gender stereotyping restricting ICA to men and age discrimination – ignoring older carers in pension age – have been dropped. So, it’s a bit simpler to spell out which carers can claim:
- any carer aged over 16 can claim Carers Allowance, with no upper age limit.
- you do not have to be living with the person you support nor are you excluded because you are the person’s partner - or parent of a disabled child / young person - and might feel you would be looking after them anyway. You could then be living with the person you care for them or not; you might be related to them, closely, distantly or not at all. You might be a friend or neighbour.
- But what counts as “caring”? Well it has to be for 35 hours a week – but that does not mean a full-time job of active, physical caring akin to a social services Home Carer - nor do you have to detail what you do on the claim form or keep a time-sheet. It may involve some physical personal care tasks, but it could also just be being there to keep an eye on someone in case they get into difficulties while getting on with other thing or giving them some verbal prompting and encouragement. For example, you are clocking up those hours when sleeping over and potentially available to help should the need arise.
- The person you look out for must be getting one of the “disability benefits” at the appropriate rates: Attendance Allowance or PIP Daily Living Component at either rate; or DLA Care at the middle or highest rate). If they just get DLA Lowest Care or only DLA or PIP Mobility , then you can’t claim CA
- you mustn’t be in “full time education” nor be earning more than £120 a week from paid work, but other income is ignored
- There are other criteria around residence in the UK and restrictions if you come from abroad, but for now I will leave it at get individual advice if that might be an issue. It’s an area that needs its own blog or two.
Only one CA claim per carer and one per person receiving a "disability benefit"
There is only one Carers Allowance claim available per person with a “disability” benefit, even if they may have several people involved in their support network. All the potential carers might need to agree who might benefit most from a Carer's claim claim and which of the carers would be least likely to have any adverse affect on the benefits of the person receiving their support - more on that next in later blogs.
And if you are a carer for more than one person with health issues or disabilities, you can only claim Carers Allowance in respect of one of the people you help. So might someone else be able to claim Carers Allowance for the other person that you help? them.
For example, in one family:
"Mum was already claiming Carer’s Allowance for their disabled child. Dad helped, but he was earning too much to claim the CA. Then the family life was shaken up when Dad received a cancer diagnosis. There were times when he was going to be pretty ill through treatments, but outside of those times he was still able to help out and be their for their disabled child, within any limitations placed on him
Now, Mum could not claim Carers Allowance (CA) for helping both the child and her partner. But Dad could take over the CA claim for their child, so that Mum could then claim CA for looking after him. That way the household can benefit – quite rightly – from two Carer’s Allowance claims rather than just the one."
What if the “disability benefit” is still being decided?
You may need to be taking time out as a carer from the word go, but the disability benefits that need to be in place for you to get Carer’s Allowance can take a while to come through, especially in the case of PIP.
Now the good news is that if awarded, both the disability benefit concerned and your claim for Carer’s Allowance can be backdated right to the day when you first contacted the “disability” benefits people. But what if finances mean you need some money to live on in the meantime? You can either:
- “sign on” as unemployed and claim Jobseeker’s Allowance (JSA) but seek a relaxation in the standard claimant commitment to be actively seeking work full time. i.e. they can make allowances for your caring commitments
- Find another route to claiming – e.g. Employment and Support Allowance (ESA) if you also happen to have health issues of your own. For the first 3 months such a claim would be based on GP’s sick-notes. And you may well be reeling from the shock of the diagnosis of the person you love and care for. This option avoids the job seeking hassle but does depend on you evidencing some illness of your own.
- Or perhaps for the least hassle, claim Income Support as someone caring for someone awaiting a disability benefits decision. This status can last for up to 6 months or until that disability claim is decided. This route to benefits is not that widely known about amongst both claimants or DWP staff, so you may need to be politely persistent for them to accept that you can claim IS this way. The words ”Schedule 1 para 4 c of the Income Support Regulations” may be important. If the disability decision were to be a “no” the person you look after may do well to appeal it – or at least get advice. As a carer though, you wouldn’t be able to carry on with Income Support pending a disability decision, unless the person you look out for made a new disability benefits claim - Get advice
Universal Credit (UC)
The positive aspect to Universal Credit is that it brings all the above together, so you don’t have to work out which benefit to claim according to whether you might be going down the “jobseeker”, “sickness” or “waiting to hear about a disability benefit” routes
One of many gaps in Universal Credit though, is that it does not have that perhaps most appropriate of all routes of a provision to leave you get on with caring, pending the disability benefit decision.
Essentially then there is one common jobseeker’s route on starting a claim for Universal Credit (UC), with discretion for your UC Work Coach to make allowances in your Claimant Commitment, whether for your caring commitments and/or any health limitations that you might be experiencing. or both
How do I claim CA and how much is it?
- You can claim online using the links below
- Alternatively, you can download one of either two forms to print off and complete by hand from those pages – the DS700 if you are below Retirement Pension age and the DS700SP if you are getting State Retirement Pension.
- Or you can ring the Carers Allowance Unit on 0345 608 4321 or in N. Ireland, the Benefits Enquiry Line on 0800 220674 and they can post the form out to you.
The basic rate of Carers Allowance is a flat rate of £64.60 per week.
Changes in Scotland for Carers Allowance
- From April 2018, everyone receiving Carer’s Allowance residing in Scotland will receive a twice-yearly lump sum supplement from the new Social Security Scotland, that is meant to have the same effect as if an Carer’s Allowance claimed from after April 2018 was paid at £73.10 a week
- From April 2019, your Carer’s Allowance will pass over entirely to Social Security Scotland and become the new Carer’s Assistance. The criteria for the benefit will be the same as for Carer’s Allowance, but the benefit will then be paid at the rate of £73.10 a week
Scotland and "disability benefits"
Quite separately, Social Security Scotland will also be taking over the disability benefits for residents in Scotland from April 2019 . Initially the current three "disability benefits" - Attendance Allowance AA, Disability Living Allowance (DLA) and Personal Independence Payment (PIP) will remain under the same general criteria as, pending a wider consultation and decision as to what long term changes to make for any new approach under a new Disability Assistance instead.
However, there will be a different approach to the three current benefits as they operate within Social Security Scotland's founding principles of “dignity, fairness and respect” . Time will tell what the changes will mean and feel like for future claimants in Scotland, but some practical changes have already been announced:
- the often totally misunderstood 6 months time limit for special rules claims for advanced, life limiting cancers is being dropped in Scotland
- face to face assessments by a Health Professional will only take place when a Decision Maker feels that they don't have enough from the other medical evisence and persons own statement (and consistency with the medical information) to make a decision - in other words the common sense AA & DLA approach will be applied to PIP with a marked reduction in numbers of assessments anticipated.
- where an assessment is required, these will not be contracted out to a private contractor - as now - but will be by public sector arrangements operating under Social Security Scotland principles
NB: Sometimes it can be better NOT to claim Carers Allowance.
This is where we go from a simple benefit to a complicated one. I will explain more about that next time, but if you are at all unsure - either before or after my explanation - then please seek out individual advice
Carers Allowance and other "earnings replacement" benefit
Carers Allowance (CA) falls into a group of benefits known as the “earnings replacement benefits”. These with name changes along the way, were the basic benefits that formed what was intended to be a mainly non-means tested “cradle to the grave system of social security” after World War II.
These are also known as “overlapping” benefits, because the basic rule is that while you may be eligible for several different ones, you are usually only paid one at a time, whichever is the highest.
So for example, you wouldn’t be paid Carers Allowance at the same time as a higher amount from say Contributory/ New Style ESA or State Retirement Pension. The system then says, that you effectively only need your earnings replaced once; a moot point given the amount you actually get...
Statutory Payments through an employer half -all into this group. They do "overlap” with each other and their direct benefit equivalents, but not with other benefits. So, you can’t get Statutory Sick Pay (SSP) and Statutory Maternity Pay (SMP) at the same time. Nor can you get SSP and Contributory ESA which are both paid for being too unwell to work. However, you can get SSP and Carer’s Allowance at the same time
Now many of you claiming your Retirement Pension. And you may now be thinking “Why on earth did you not say so at the start Tom?? All this encouraging talk of age limits being abolished and now you tell me that my Retirement Pension will block my Carer's Allowance. All very diverting but…”
Well, it could still be worth claiming that Carer’s Allowance, even knowing you won’t be paid it! You would then still be on Carer’s Allowance’s books, but with what is known in the trade as an “underlying entitlement” to CA . You would get a letter to the effect of: “Yes you do qualify for Carer’s Allowance / Assistance and we would love to pay you £64.60 / £73.10 a week , but we can’t because of your Retirement Pension. But do contact Pension Credit…”
And while the CA itself can’t be paid, you would get an extra allowance – the Carer’s Addition/Premium - in income related benefits such as Pension Credit and Housing Benefit. You are then, claiming not to get the Carer’s Allowance itself, but to receive extra amounts of income from e.g. Pension Credit and/or extra help with rent and council tax.
Indeed, in some situations being told you qualify for, but can’t be paid Carers Allowance can be the best place to be when it comes to in maximizing benefits for both carer and cared for… But I will explore all that next time.
In future parts of this series…
In Part 2 of this mini series , we will explore the effects of a Carer’s Allowance claim on means tested benefits and the extra help to top up basic Carers Allowance and the benefit you can get there from claiming Carer's Allowance even when you know it can't be paid. Then in Part 3 we look at when sometimes it may be best to hold your horses and not claim Carers Allowance or find a workaround, claiming as both a carer and admitting to any health difficulties of your own and some key differences for extra help for carers and the people they support under Universal Credit.
If in any doubt about all of this in your situation, please do seek out individual advice. You can contact a Maggie’s Benefits Advisor at our centres –find your nearest centre here. Or see the links for other help below.
Please feel free to post general queries and share comments and experiences on the Online fora.
But for now, many thanks for reading thus far. And of course, for caring
Further reading and useful links
- Sue-maggie, our Maggie's Online Cancer Support Specialist's blog: What cancer means for carers - here
External links
- Carer’s UK – here
- An article in the Guardian around the value of carers - here.
- DWP - Claiming Carer’s Allowance in Great Britain- here.
- Claiming Carer’s Allowance in Northern Ireland - here
- Social Security Scotland – Carers Supplement - here
- The rules on claiming Income Support while waiting for disability benefits to be sorted are at Schedule 1, paragraph 4c - here
.Other blogs in this Benefits and Carers series
- Benefits for Carers - Part 2- Extra means tested benefits for carers - here
- Benefits for carers - Part 3 - When not to claim CA, carers with health issues and changes ahead - here
Other related blogs you may find useful:
- Disability Benefits : AA. DLA, PIP and Cancer - starting here
- Benefits and cancer - an overview starting here
- Find out more about.... Benefits and Cancer
- Find out more about benefits for... Difficulties with day to day living and getting around
Getting individual advice with benefits:
There may be a variety of other places where you can get face to face advice advice and eg help with forms or challenging adverse decisions in your area. The local patchwork of advice and support can vary and you may be able to find specific carer's centres or advice that best suits your needs. But good place to start looking include:
- Visit your local Maggie's Centre and talk with one of our benefits advisors. Find your nearest centre here
- See if there is a Macmillan advice service nearer you - here
- Find your local Citizens Advice office: in England & Wales - here. In Scotland - here
- Find out more about.... Benefits and Cancer
- Find out more about benefits for... Difficulties with day to day living and getting around