Not claiming as a carer and UC changes

Monday 15 October 2018

A look at the situations when claiming Carers Allowance can have an effect on the benefits of the person you look after Benefits, benefits for carers who also have health problems and some key differences under Universal Credit.

In Part one of this series of blogs on Benefits and carers we looked at who counts as a carer for claiming Carers Allowance, some common confusions between benefits for the person doing the caring and for the person being cared for and between "sickness" and "disability" benefits . In part Two we looked at extra means tested help if you did not have much other income coming in and why it can still be worth claiming Carers Allowance even when you know it won't be paid because of the boost to a carers means tested entitlement as a result 

In this part we start with a head hurty look at how actually receiving Carer's Allowance can sometimes affect the benefits of the person you care for - in particular if they are - or ought to be getting a "severe disability premium" . There may be choices and win-wins around this , trade-offs or a best not to claim CA outcome. We also go on to look at how carers with health issues can get premiums additions for being a carer while also getting amounts to recognise their own sickness and disability issues. 

And finally how such  real life complexities is just a little too complicated for Universal Credit with some key differences in UC's approach to caring a, sickness and disability. 


When not to claim as a carer  

carer for claiming Carers Allowance, WARNING: Sometimes claiming Carers Allowance can seriously damage your wealth

(or rather that of the person you look after)

There are situations when between you and the person you look after, it may be better for you not to claim as a carer.  This issue only arises if the person you support:  

  • claims a means tested benefit; and 
  • is able to access an extra amount in their claim called the “severe disability premium” (or “severe disability addition” in the case of Pension Credit) 

The severe disability premium is one of the most valuable of the various premiums and additions that are added in in certain circumstances. It is worth up to £64.30 extra a week.

It is there because of pressure on past Government’s not to do away with extra support for those on the lowest incomes who claim a disability benefit.  While the “disability benefits” do provide valuable extra income to help with the additional costs of daily living and getting around, research shows that on average they don’t fully cover those extra costs. 

As a result,  there is a case for an additional payment to those on disability benefits on the lowest incomes. There was such a payment in the old Supplementary Benefit on top of individually assessed additional requirements for diet, heating, laundry and extra wear and tear costs. The big idea back when Income Support was all shiny new and universal was to merge all these bits and pieces into a single "disability premium" set around the average of the previous payments 

But this fell well short of the amounts for the minority getting the extra amount in connection with receiving a disability benefit, so the then Government reluctantly accepted an additional "severe disability premium". But in doing so,  they added extra conditions to this extra premium to restrict the cost. If neat simplicity had been lost, let's make it really complicated :-) 

To qualify for a severe disability premium, the person you support must:

  • 1. receive either rate of Attendance Allowance,  PIP Daily Living or the middle or highest rates of DLA Care; and
  • 2. be counted as “living alone”; and
  • 3.  no carer  is actually receiving a Carer’s Allowance in respect of them 

One result , of the complexity caused by extra conditions is that many people entitled to this premium don’t actually get it. It’s not as simple as adding it on to anyone’s benefit if they are awarded one of the disability benefits. 

First, the DWP has to remember to send out a short form to check details for the other two conditions – and they are a) not very good at sending them out and b) understanding what on earth you are on about if you ring up and ask for one. I have come across people who have met with well-meaning denial that there is even such a thing. 

You can download a blank IS10 from the page here where you can also see advisors hurrumphing :-). A letter answering all the questions on it will do just as well. 

It is then both fiddly to get if you are made aware of it, but too easily overlooked if you are not. It is almost counter-intuitive to a benefit steeped in "give with one hand, take away with the other" to not only get extra income from a disability benefit without it being taken off your means tested benefit, but also to actually become entitled to more means tested benefit as a result. Far too many people have missed out as a result, as the DWP found when they pro-actively trawled through all cases; but that was some years ago. 

The first thing to consider then is whether the person you support is getting the SDP within their benefits, and if not whether they should be. Which means looking at those conditions for SDP. 

The first "qualifying benefit" condition  is straightforward enough: someone is either getting the right qualifying benefit or not. If not then it may be worth seeking advice as to whether they could be entitled to make a claim or look at increasing an award of DLA Lowest Care or just PIP Mobility. It’s the other two that add the fiddly complications, unrelated to someone’s health conditions, and add the need for a form or letter to confirm other circumstances 

The second "living alone" condition can be quite simple if someone actually does live on their own . Just tick a box on the IS10 (or equivalent) and miss out most of the rest, sign and return.  If they don’t live alone, then they might still be counted as if they did; there is a list of people – and of follow up questions - whose presence is ignored are. This list is largely just cut and pasted over from a list in the Housing Benefit regulations drawn up for quite another purpose; " Good grief !" is indeed what – in summary - the High Court said to that

Take Florence and Dougal for example. Florence does not live alone as Dougal is pottering around the place. However, if for example, Dougal also had health problems for which he also claimed a disability benefit, then he would be ignored (but in a nice way). The result would be that Florence would count as living alone for her SDP, as would Dougal for him. Couple then will usually either end up with two SDPs or none at all.

Condition three - "a carer not actually receiving Carer's Allowance" is where a CA claim may or may not have an adverse impact:

Let’s go back to Jemal. He is a popular guy with lots of friends all more than willing to rally round and support him. Potentially all could claim Carer’s Allowance though, but only one of them can do so and in each case there would be a different trade off between extra money for a carer and Jemal’s SDP:

  • 1. Jo as we have seen would be paid the Carer’s Allowance topped up by Income Support. She would gain £36.00 – as well as being freed from jobseeker hassle. But Jamal would lose his SDP, worth £64.30 a week. Financial y there would be some benefit in Jo not claiming Carer’s Allowance,  but if she were the only carer  that might be trumped by the need for her to be freed from jobseeking requirements to help Jamal. But perhaps things work better with one of the others 
  • 2. John is an at home main child carer, while his partner, Janet is working full time in publishingat Ladybird books, which caused the couple to be determined to defy gender stereotypes. Janet is well- paid and John gets no benefits. If he claimed the Carers Allowance, he would receive an extra £64.60 a week in Carer’s Allowance as this is non-means tested and unaffected by Janets income. . But again, because Carers Allowance would actually be paid out to someone, Jamal would lose his £64.30 SDP. Here though, it’s a straight swap and Jamal may be more than happy with that.
  • 3. Jan is retired and claims Retirement Pension topped up by Pension Credit. If he applied for the Carer’s Allowance, he would get the letter saying he qualifies but can’t actually be paid it. He would though still benefit by getting £36.00 added to his Pension Credit. However, because Jan doesn’t actually receive the Carer’s Allowance, then Jamal can still keep his SDP – a win-win !! 

That can happen too with a “working age carer” on means tested benefits as long as they too have an overlapping benefit to block off actual payment of their carer’s allowance entitlement. For example if Jan was younger but getting Contributory ESA for his own health issues, then again he could have the carers premium in his means tested top up while Jemal keeps. 

However things look very different for carers on Universal Credit and this win-win situation just will not work along with other changes – see below.  

Hopefully, these examples, helps make a bit of sense of a complicated area. You may need to re-read it slowly .  The issue then – which only applies where the person you look after is benefiting (or could benefit) from an SDP - is that you claiming Carers Allowance could potentially adversely affect their benefits. If in any doubt, please get advice.

Could life be made simpler?

1.One solution would be to simply drop the extra conditions and allow SDP to be a simple – and automatic – means tested top up to disability benefits, to offer additional disability help to those on the lowest incomes because on their own AA, DLA or PIP tend not to cover the full extra costs that eg cancer can bring.  Indeed in its original design UC was going to take a simple two tier approach to disability benefits from tax credits - an amount depending on which rate of "disability benefit" applied

2.The other is to abolish it - and the other disability benefits altogether; and that is what Universal Credit eventually ended up doing.  It's one thing to not allow extra moneys for new claims, but another to remove it from people moving over to universal credit and UC has found itself in trouble in the courts. Leaving that aside, the abolition of SDP in the future doesn't mean the problem has gone away if you are a carer on UC though : the person you look after is still more likely to not be - either on Pension Credit that does not disappear into UC or still on the old "working age" benefits that will be around to December 2013. The "problem" then still remains and the solution for potential simplification of a big cut - and some other confusions -  is rather less than ideal ...


Carers with their own health issues    

In an old fashioned view of the world, carer’s are busy fully fit and healthy people lending a hand – whether by physical help, verbal encouragement or keeping an eye on -  disabled people who meekly sit gratefully in a corner with a rug over their knees. 

Now there is nothing wrong with a soft comfy blankee at times, nor having a little lie down and giving into it now and then and recuperating. But on better days, society is getting a little bit more used to the idea that people with disabilities can actually contribute significantly  to their families, communities or workplaces.  And any assumption they cannot, could be unlawful discrimination under the Equalities Act. 

And that could include being a carer too. You might take that role on despite your current health issues. Or you might develop some health issues as a carer, whether as time marches on or related to the physical and emotional stresses of being a carer. 

It is not then,  an either/or whether in real life and nor should it be in the benefits world. You can receive Carer’s Allowance - and related premiums for being a carer -at the same time as receiving a disability benefit – and related disability premiums/additions - in respect of your own health conditions. Or for working age carers, while receiving Employment and Support Allowance (ESA) while being too SA unwell to work. 

Caring for 35 hours a week sounds like a full-time job – and may sometimes feel like it, but it is not the same as a social services Home Carer whizzing around – faster than the speed of light on some schedules – to visit many clients. Some of it may be involve full-on help with washing, dressing and so on, but a lot may be more verbal support and guidance, re-assurance or jut being there in case someone gets into difficulties. 

The point is don’t rule yourself out of disability benefits, just because you have taken on the main caring role. But equally don’t rule yourself out of carer’s benefits, just because you are already claiming a disability or sickness benefit. The same also applies to the equivalent disability premiums (there are three of them!), ESA components and carer’s premiums within means tested benefits. For example: 

  • 1. Florence and Dougal - her cancer diagnosis was the main reason why she and Dougal sought advice about their benefits. However, it turned out that Dougal too has health problems, perhaps of a less alarming and age-related kind.  The focus in cancer terms may have been on Florence’s cancer journey and Dougal’s desire to support her, but Florence is still quite capable of organising Dougal – cheerfully  - and lending a hand too. The couple then could both get Attendance Allowance and both claim Carer’s Allowance for supporting  each other. And they could also each have a severe disability premium and a carer’s addition each included in their joint claim for Pension Credit. 
  • 2. Bill  and Ben - lives down Flowerpot Drive from his friend Ben. Bill has developed arthritis and back problems from a lifetime of gardening and wire work, but has been helping Ben since his cancer diagnosis. Ben is getting ESA and Personal Independence Payment. Bill gets Contributory ESA, so knows – that like Florence and Dougal he won’t actually be paid the Carer’s Allowance. However, despite his own health difficulties he can receive a carer’s premium within his top up from Income-related ESA. He can be a carer at the the same time as also receive benefits for sickness (like ESA) or disability (such as PIP) 

Entitlement to both the disability benefits (AA, DLA and PIP) and benefits for sickness (ESA) is based on you meeting their respective criteria. You may more than do so, yet still be able to act as a carer. Similarly, the fact that you act as a carer, should not have any effect on those assessments.  For now then, there is no conflict between being a carer and admitting to health issues of your own, though you may have to remind DWP staff to avoid mistakenly seeing carers and people with health issues as opposites. If you need a hand with gentle re-education, please get advice.

Universal Credit differences 

In it’s desire to be blue sky thinking Universal Credit does not always cope with many of the subtle complexities of real life. It sometimes feels as if some very bright young things were sent off into a room to design UC, but to on no accounts talk to a grown up in other benefits…A shame, as UC still has potential to be a rather good benefit if rescued from itself 

The result is that UC doesn’t actually get disability and caring sensibly and has already had a brush with disability discrimination law and reality because of that and may yet face more.  UC deserves its own blogs to explain it, but  there are key differences :  key differences relevant to this blog are: 

  • UC does have a carers element of the same value as the carers premium / addition. However, there are some differences: On the plus side, for the first time carers in work can benefit from the element in a way they could not under tax credits. On the downside: , carers with their own health issues will no longer be able to  receive both UC's equivalent of ESA components and a carers element at the same time, unlike under ESA. It will be one or the other for the same person, although in a UC couple claim, one partner could get one element and their partner receive the other.
  • There are no adult disability elements like the SDP – within Universal Credit. An extra amount is included that partially makes up for this within the ESA type elements for sickness; some people who are unwell e.g from a cancer diagnosis will gain, others lose from the arrangements. Confusing the two concepts of @sickness@ and "disability" support though does really mess up UC’s offer  when easing back into work 
  • The child disability amounts – eg for children and young people with cancer – do remain under UC,  but in the majority of cases are more than halved.

So the issue of whether to claim CA or not won’t apply if the person you look after gets UC, as there is no SDP to be protected or compromised. However, it may stiil be an issue if the person  you look after is on is still getting a severe disability amount either because they are on still on the old "working age" benefits or because they are on Pension Credit which carries on during and beyond the UC rollout. 

And unlike with legacy benefits, just receiving the UC carer’s element – even if the actual Carer’s Allowance is blocked by an "overlapping benefit" – would be enough to end any severe disability premium / addition. The "win-win" option outlined above does not work where a carer is receiving UC… 


Enough already… 

This blog has been getting into some pretty complicated areas, so well done if you have followed this through to the end;  I very much hope it hasn’t made your head hurt too much . 

Over this series of blogs we  have seen that:

  •  the basic Carer's Allowance is not too complicated in itself in that there is no financial assessment and you don't need to keep detailed tabs on your caring to justify your award. 
  • It does though depend on the person you looking after receiving one of the three "disability benefits" and many people wrongly rule themselves out because they are hoping to be into recovery and back at work and not out of action long enough for such longer term support. However, recovery can sometimes take a little bit longer than expected and even if you are able to be back in work you might still remain entitled to a "disability benefit" and other "in work" support. So do think again before discounting the possibility of a " disability benefit" for the person with cancer and a Carers Allowance for the person supporting them.
  • If Carers Allowance - or even the more generous Scottish version - is going to be your main or only income then it is worth looking at means tested benefits to top you up. 
  • And sometimes in a surreal twist it can be worth claiming a carers benefit that you know you are not going to get in order to boost entitlement to means tested benefits. That could just be some extra money up to £36 a week, but in some cases can have much more dramatic impacts eg if a pension age carer with life savings moves from a position of no help with rent and council tax to full help.
  • We moved on to the even more Alice in wonderland world of the severe disability premium and potential adverse affects of a carers allowance claim. It's not a "no-no", more a "proceed with caution" as you navigate potential losses, simple trade offs or even a happy "win-win" for both carer and cared for. Universal credit was right to look at simplifying it but perhaps not to abolish this valuable additional help.
  • We've also seen throughout,  that in real life you can be both caring and cared for at the same time - having some health issues of your own while being a carer. In fact many couples operate as a couple and play to their strengths both giving and receiving support from the other. Caring brings many rewards but can also affect health. One partner may have been taking on the carers role when perhaps they come into a Maggie's Centre after their worlds have been turned upside down by a cancer diagnosis
  • So we have looked at how the benefits system can cover both aspects - how you can claim both carers and disability benefits for yourself for the same time, how the Pension Credit and working age legacy benefits can cope with that too, but how unfortunately - so far- it has proved all too much for  Universal Credit.  

I hope then that  as well as making heads hurt at times, these blogs have given you an  idea that there are too many benefits - both for carers and the people that they care for - that are left unclaimed. Sometimes, claims can be very simple and straightforward, other times still simple in concept, but take a bit more form filling work and assessment . There are sometimes  further  complications in the world of means tested top ups - but these are still well worth exploring as these extras can make a real difference . However you may want to  talk to an adviser at that point, even if  if you haven't felt the urge earlier ...    

For individual advice, specific to your situation, please contact the Benefits Advisor in your nearest Maggie’s centre . Or try the other sources in the links below. But also please feel to post a general comment, query or experience in the forums 

Many thanks then both for reading and for caring 

Useful links and further reading

  • Sue-maggies - our 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 1 - Who counts as a carer for claiming Carer's Allowance - here
  • Benefits for carers - Part 2 - Extra means tested support for carers - here

Other related blogs you may find useful:

  • Disability Benefits : AA. DLA, PIP and Cancer - starting here
  • Benefits and cancer - an overview starting here

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 local centre here
  • see if there is a Macmillan advice service nearer you - here
  • find your local Citizens Advice office / bureau: in England & Wales - here. In Scotland -here

Get cancer support near you

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