To think the disgrace that is Carers' Allowance should be a national scandal

[FoxyTheFox]

Carers' Allowance is paid to someone over the age of 16 who provides a minimum of 35hrs p/wk of care to a disabled person who is in receipt of a qualifying benefit.

The current weekly rate of Carers' Allowance is £67.25 p/wk, taken over 35hr this is the equivalent of £1.92 an hour. Over 24hrs, seven a days a week - the reality for many carers - it is only 39p an hour.

You can only claim Carers' Allowance once, meaning if you care for multiple people - e.g., if you have two disabled children - you still only get £67.25 a week.

There is an earnings cap of £128, so working just 15hrs a week at minimum wage is enough to stop your Carers' Allowance.

Carers' Allowance is a taxable benefit so can reduce the amount of other benefits you claim, it can also reduce the amount of benefits claimed by the person you care for. Unlike other state benefits, Carers' Allowance does not entitle you to free prescriptions or help with other healthcare costs such as dentistry or eye tests. Caring has a detrimental effect on physical and mental health but there are no specific support services for carers other than those set up by external agencies (e.g., Carers UK).

When you reach state pension age you are no longer allowed to claim Carers' Allowance even if you are still providing care.

These carers save the government an estimated £132bn each year in health and social care costs - enough to fund a second NHS. If these carers were to suddenly decide to step back and no longer provide the care needed, the social care system would collapse.

Universal Credit was temporarily increased by £20 a week to support people during the increased financial difficulties associated with the pandemic. No such increase was extended to carers in the majority of the UK, however Scotland offered a one off additional payment to carers to recognise the additional work and additional costs borne by them during the pandemic.

I've written to my MP, who does not give a shit and sent me a generic reply about how caring is hard and the government is grateful to those who care but did not actually address any of my questions or my request that he raise the issue in Parliament.

novaramedia.com/2020/11/16/the-government-has-abandoned-carers-during-covid-19-now-its-being-taken-to-court/?fbclid=IwAR2Fs10I04h0fUNMRtDTYf0hs_ieA63dVeb5Hux8Os4IQttTBD95eGemCRA

www.carersuk.org/news-and-campaigns/news/research-the-forgotten-families-in-lockdown-unpaid-carers-close-to-burnout-during-covid-19-crisis

I'm sure that's what people thought about my 'support' for my elderly relative.

I am talking about some friends who are quite open about it not doing much care. Tbf, they are totally aghast that the CA I receive is at the same level as theirs as even they can see these two types of caring are not comparable.

I don't have the answers though how to make the system fairer.

Shopping, cooking, cleaning and the likes are care needs that are very often needs that people don't see as care needs when they absolutely are.

The example earlier in the thread of a man whose wife had shopped and cooked for 20 years. If an adult cannot shop or cook then the fact that it is their wife that does all of it doesn't make it a care need.

I have a friend who gets some snide comments from people about this because "all" she does in terms of care is all the shopping, all the cooking, all the cleaning and housework, all the appointments and driving and his paid for carers currently move him from bed to chair, shower him and some other bits. Apparently that's what "lots of wives do". However there is a massive difference between a couple splitting their life load in a way and someone's husband suddenly not being able to do any of those things any more.

Hidden care needs are still care need and shouldn't be underestimated

My fil could be "left unsupervised" but my sil still had to hide and ration his class A medication because he would drink it like pop. She would still get calls from the medical alert centre because he had fallen over and would have go and lift him off the floor. She would still be cleaning up pools of pee all around the house every evening when she went round to cook his tea because he hadn't made it to the toilet in time.

I honestly didn’t know that other benefits went down when you claim Carer’s Allowance

That is ridiculous, why give it with one hand and take it with the other?

To be honest I think even if all your are doing is say 12 hours of care a week (one hour a day on week days, two hours a day on weekends) cleaning and shopping for elderly parents, £67 a week is still a bargain to the government. That’s less than 8 hours of minimum wage for a carer, let alone the admin time to recruit, run payroll, deal with HR etc. With on costs it wouldn’t even cover 4 or 5 hours a week I suspect.

You’re absolutely right, as parent carers to disabled children our role is very different, and it’s galling that we can’t claim carers allowance at all. We are fortunate that we just scrape under the threshold for tax credits as that means we get the severe disability element x 2. That’s the only reason I don’t have to work full time, but if I did have to work full time I don’t know how we would manage - there’s no wraparound or holiday care here for children who need full time 1:1 support.

I was so relieved when they delayed the transfer from tax credits to UC as we would have lost nearly £4K a year when they were on MRC.

But dairyfairies, needing help with shopping and cleaning aren't PIP descriptors so those parents wouldn't have been eligible for the qualifying benefit on those grounds.

And therefore no CA could be awarded.

I don't know on what grounds their parents get PIP. I have have friends who are not working and getting CA instead (one is a Sahm) and they are quite open that the care they provide is shopping and some cleaning and that it is actually very little what they do. I don't know if their parents get help otherwise but my friends get the same rate of CA as I do.

My point was that this is nowhere near the same level of care some other carers provide for those with 24/7 care needs and yet, we all qualify for the same CA rate.

No wonder the attacks on the benefits of sick and disabled people have got through the system with some of the attitudes on this thread

Some people are so blinkered

And therefore no CA could be awarded.

the question is not how much care you do. If you don't work and you 'care' for someone on middle rate DLA (not sure what pip rate), then you qualify. It is the disabled person's DLA/Pip rate which qualifies you. Not the actual care you do. nobody cares (no pun intended )

"and they are quite open that the care they provide is shopping and some cleaning and that it is actually very little what they do"

Or perhaps they don't want to give you the full detail of what they do.

Or perhaps they don't want to give you the full detail of what they do.

all these people on this internet threads knowing more about my friends than I do.

@JamieLeeCurtains

But dairyfairies, needing help with shopping and cleaning aren't PIP descriptors so those parents wouldn't have been eligible for the qualifying benefit on those grounds.

And therefore no CA could be awarded.

Unless you get into being very petty then you can easily take what someone qualifies for in PIP and translate it to CA being awarded for shopping and cleaning if you feel care needs should be specified.

For example if someone is given PIP points for being unable to manage budget decisions, needing help engaging with other people face to face, and either cannot plan or follow or journey or cannot move around without assistance then it is perfectly reasonable to assume that a carer doing their shopping is an acceptable award, despite the fact shopping is not specifically mentioned.

Same with cleaning - if someone cannot move around without assistance, needs assistance to dress or undress their upper or lower body and needs assistance with washing their body then it is not remotely unreasonable to assume that they will need assistance in cleaning their house.

@BoobsOnTheMoon

It is absolutely a disgrace.

I am eligible to claim CA but don't, because I'm self employed and some weeks I earn over the £128 earnings limit. Most weeks I don't, but the hassle of stopping and starting everything means it's easier not to. So far this is ok because I'm on tax credits but when I'm moved to UC I don't know WTF I will do. If you don't claim CA then you aren't considered to be a carer by the DWP, so I suppose I'll have to claim it then so I'm not forced to work 35 hours a week (impossible with a disabled child who has no school place so is at home 7 days a week!!). I'll end up worse off though if I claim CA

It's a shambles. People who are carers should be properly compensated for their loss of earnings capacity.

This post accurately describes how a rigid system causes people to become dependent on benefits, which they are then castigated for.

People who are on means tested benefits cannot apply for jobs that are 'as and when required', so until employers step up and offer fixed hours fixed pay contracts to all new applicants, they are excluding the most vulnerable group from the workplace.

Or perhaps they don't want to give you the full detail of what they do.

This is so accurate.

It's very common for carers to downplay their role.

Partly because if you think too much about exactly how much you do it can be overwhelming

@lyralalala

Or perhaps they don't want to give you the full detail of what they do.

This is so accurate.

It's very common for carers to downplay their role.

Partly because if you think too much about exactly how much you do it can be overwhelming

I used to downplay it because I felt guilty about not giving all that time to my DC.

It was awful.

I think carers allowance is too low but I don't get agree with different rates for it. It is very difficult to quantify and compare like that - and with a teenager on high rate for both I would likely be one of those who would get the highest rate if there were different rates.

YANBU. The government hands out money to people who choose to put themselves in certsituations and expect someone else to pick up the tab, yet ignores carers, who have not chosen the circumstances they find themselves in and have a, hard enough time as it is. It's an absolute travesty.

I don’t think this pitting carers against each other idea.

Whether it’s supporting an elderly parent or looking after a child with severe disabilities it’s still full on. It still impacts every aspect of life. It certainly deserves a lot more respect and recognition than it gets.

My mum was registered carer for both of her parents at different times (doing it for both while both where alive) over a period of over 20 years. She couldn’t work. She was there every other day at least doing what was needed for them. In that time she never even went on holiday for more than a week because she knew they wouldn’t cope and siblings couldn’t step up.

It may be different from my role as a parent carer but it doesn’t make it any less important. It still saves society an absolute fortune especially over such a long period of time!

I used to downplay it because I felt guilty about not giving all that time to my DC.

It was awful.

I do it because being brutally honest about how high my DD's needs are is awful.

same years ago when my Nana had dementia. Pretending it was just a bit of shopping and cleaning was the only way I could cope. Plus my Nana would have been mortified if people knew I was having to wash her and help her in the toilet so I'd never have told anyone around us that.

I don’t think this pitting carers against each other idea.

It's a dangerous road. It's the mentality that made the cuts and changes to disability benefits socially acceptable.

If an adult let's say an elderly person retirement age has health issues
Things like "social care" like washing, dressing, cooking, laundry are not free
So someone has to provide that care
Whether that is a relative or friend on carers allowance, social services or paid for by the person

We are all living longer (not including Covid)
Average life expectancy 80+
More people living until 100+

I've had experience & my friends too

This issue is not going to go away, but increase over time

I laughed at "the bit of shopping" if only that were true !

This is a fantastic thread, FoxytheFox. I'm trying to write a book on the impact that caring responsibilities have on the way society looks at women - there's an assumption that we are all born to serve, one way or another, & not fit to have choices of our own - that some women sidestep, but that many more are crushed by. If I ever find a publisher I will thank you for the useful (and downright shocking) stats. To the barricades!

I'm a carer to my DD. The money is terrible but we are lucky that my DH's job keeps us afloat. We are on thin ice if he loses his job...terrifying

I don’t think this pitting carers against each other idea

agree - it creates an opportunity for there to be deserving carers and undeserving, which is how you get the public onside before you make cuts - we've already seen evidence of this on this thread.

Unless you are in the position of being a carer you dont know what they are doing. You dont know because you havent done it and you cannot understand how, even to the point of not even sleeping properly for years for the need of keeping an ear open for noises or signs that you will need to be up and helping, costs in real life.

Everything that most parents take for granted, things their kids will grow out of as they mature, can continue way beyond the normal range. Your kid may look like they are functioning well - but do you know how much extra time that parent has spent talking and preparing them, and will spend after the event comforting/talking them down/decompressing. It was taking my ASD son to partake in a very simple speed cricket competition at age 9 and seeing what I was having to do just to enable him to take a few runs and bowl a few balls, compared to the other parents who were enjoying a worry free day of fun with their kids, that really brought it home to me just how much 'extra' he needed compared to an average kid. As his sister also has ASD plus a chronic progressive disease (and gets PIP and had DLA since age 4) I hadnt really had much to judge against. I alsready had carers because of her needs, so that wasnt an issue.

But it really showed that a kid may be at school, may seem to be doing OK, but what their parent carer has to do to enable that is often almost hidden

Also, if you were to meet my DS, on first impression you'd wonder why the flip he gets DLA. He's able bodied, physically active, loves cycling and surfing and museums and the cinema and going out for cake in cafés, polite, chatty, knowledgeable, superficially cooperative, bright, startlingly articulate...

He's also autistic, and has social communication and sensory processing difficulties that mean he has not been in full time school for 3 years and is now at home full time with a tutor coming in 2 days a week. Being in school was so hard for him to cope with that he had frequent violent meltdowns and needed at least 2:1 adult supervision at all times (this is written in his EHCP and school risk assessment, I'm not just saying it to get benefits ). He's nearly 11 and I still have to hold his hand in the supermarket FFS as he will wander off or lick the ice round the edge of the freezers or get overwhelmed and lie on the floor under a shelf. He can't interact with another child without me or his dad being in the same room, because his social communication and understanding of social and non-verbal cues is so limited and simple misunderstandings can cause him to lash out. When he was in school I was on call all day every day and would be called to take him home at least twice a week.

The care he needs is way over and above what you'd expect to be doing for a Yr6 child. But people don't see that. They have no fucking idea of what it takes to keep him functioning and taking part in society (even in the very minimal way he currently can) and most of all to keep him and everyone around him safe. It's exhausting. He is with me all day every day. There's no break, no respite, nobody will take sole care of him except me and his dad. Nobody, not even school. So whilst you might see us out on a bike ride together and wonder why on earth he can't just go to school and why I can't just get a proper job and why I get DLA for him when he looks just fine for the five minutes you might spend chatting to us.... The reality is very different.

And yet claiming carers allowance would still leave me worse off so I don't bother. That is a sign that the system is fucked, quite frankly.