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

35h hours of need specific to the condition/disability is a lot. Counting things that a parent, slide or relative would do anyway shouldn't be counted in these 35h.

Things a "parent should be doing anyway" are only counted if they are over and above what an average child of that age would need. For example, you would expect to clothe your 6yo but you would not expect to have to buy clothing in specific fabrics or colours and to cut out all labels and badges or to have to either sew all the seams flat or buy seam-free clothing (which often costs more). You would expect to put your 11yo to bed, you would not expect to be up several times in the night with said 11yo. You would expect to provide your child with age appropriate supervision while bathing or, for an older child point them in the direction of the bathing facilities, you would not expect to have to spend up to two hours persuading your child into the water, supervising them the entire time (even once past the age of needing constant supervision), making sure they don't pour out or even drink any of the bath products, and then persuade them out of the water at the end. You would expect to help your child develop social skills, you would not expect to have to manage and monitor all of your child's social interactions. You would expect to help your child develop emotional regulation skills and conflict resolution, you would not expect to have to deal with violent outbursts from your child where they may harm themselves or others. You would expect to help your child gain independence, you would not expect to have to come to terms with the fact that what independence your child does gain in likely to be limited and that they will never be wholly independent.

Things "a parent should do anyway" absolutely should be included because parenting a disabled child is a totally different ballgame to parenting a typical child.

"A family member was a SAHM. Her husband earns very good money. Her 3rd child was diagnose with diabetes and got DLA. She applied immediately for carers allowance. He is at school FT and no way she provides 35h of care additional to what she'd provide if he didn't have the condition. They don't need the money but it's a bit of extra cash

35 hours a week only works out at 5 hours a day. Full time school still leaves more than 5 hours a day.

To get DLA at a level to qualify for carers allowance then the professionals have assessed that he is entitled to at least middle rate care.

I am no expert on diabetes but from what I do know I can very easily think how the extra care/work needed would be in excess of 35 hours a week. Especially for a newly diagnosed child

@Circusoflove

Was coming on to say the same thing dontdisturb. It isn’t monitored. I have a family member who has just been awarded a disability related benefit and the first thing she did was cast around amongst family and friends to see who meets the criteria to claim carers allowance - ie not working etc, because otherwise the money would ‘go to waste’.

If your family member meets the very stringent criteria to receive PIP, she must need care. So someone is caring for her.

She would also lose severe disability premium / not be eligible in future, if a carer claims CA in respect of her.

The whole point of this thread is to show how how CA isn't 'free money'.

Sigh.

@dontdisturbmenow

HRC is continual care needed. My DD is often awake 22 hours a day. She is a minimum of 1-1 at school. She can't be unsupervised if she's awake. My DS gets MRC because he also can't be unsupervised even for a moment but he sleeps so doesn't qualify for HRC. To get HRC I sent a huge amount of evidence not only that she is awake due to her disability but that her disability also means she needs to be surprivised.

Its a high level of care you need to prove to get DLA. Like hell should we then need to prove it for carers too.

I wouldn’t even know where to start with breaking down the extra work needed to care for DS, but if we started the working week at 8am Monday I think I wokld have finished my 35 “paid” hours at some point on Tuesday.

Going back to the “but they go to school full time” argument before. DS goes to school full time (when well or not self isolating)

However that doesn’t mean I’m sat on my arse while he is at school, there are still meetings to attend, medication and feeds to arrange (and figure where to store!), consultants and other professionals to chase up or contact about the new problems, the extra cleaning and washing which comes with the territory.

Now we are finally getting back to appointments being face to face for some things this week we have two appointments during school time both are a 40 minute drive from here at different hospitals.

So ye the “but they are in full time school” argument doesn’t really work!

And a big yes to the school full time thing. She only does 11-3. During those 4 hours are when all meetings are scheduled, when I get a chance to do housework and god forbid I get an hour breather because by law employees should get a break. My respite is school, social care have said as much.

"35h hours of need specific to the condition/disability is a lot. Counting things that a parent, slide or relative would do anyway shouldn't be counted in these 35h."

Well you could say all parents have to supervise their child but the act of supervising some children is way beyond the supervising you would do for most children so all the hours of supervising count as extra hours.

Well, I am on carers allowance and I get a lot of not so nice comments. Even from friends. - at least I don't have to do anything like signing on with the Job centre (yeah, I only care in excess of 90 hours but hey ho), I am lucky because I get a lot of other benefits on top, I am lucky because I don't have to worry about losing my job.

I think secretly, most people look down on us and see us as an equal drain as the person we care for.

Nobody cares about the carers, apart from carers. Nothing will ever change as we can't go on strike. The gov knows we are gonna carry on until we bite the dust.

and there have been petitions and the government made it clear in their response that nothing will change and they think we are all well looked after by the state.

I have friends who care for children & adults with different disabilities & ages

I believe caring for an elderly person is care allowance only. No DLA/PIP

It's 24x7x365 care

I agree people should be paid more

Couple of my friends have had to give up their jobs

He is at school FT and no way she provides 35h of care additional to what she'd provide if he didn't have the condition. They don't need the money but it's a bit of extra cash

My teenage aughter wakes up around 5. So I have to get up with her (autism and severe LDs). I typical teen would not need looking after but could sort herself in the morning. So I spent 3 hours, looking after her, dressing her, making breakfast, making sure she eats, brushing her hair, brushing her teeth. Getting her out of the house, waking her to the minibus collection point to her special school.
-That is 15h/week

She comes home at 3 and won't sleep until 11. She cannot be left alone even a minute. She needs help changing when she comes back, help with school work, general supervision, changing in the evening. She needs help to take a shower, brush her teeth, needs at least 1h-90mins to settle to sleep. That is 7h/day, i.e. another 35 hours per week. So we are already at 50 house..

and Saturday and Sunday which are days from 5 a.m. to 11 p.m. , i.e. another 35 hours. so we are looking at 84 hours of caring and that is during term time. You can add up the numbers for hols hols..

Do you really think I don't deserve this extra bit of cash even when DD is in school?

Having a child in school FT still means a h of hours outside school where we provide care.

Fwiw, I would like to work bit there is no breakfast club, no after school club, no holiday club. What do you suggest what we deserve?

@dontdisturbmenow

The problem with carers allowance is that it isn't monitor and relatives/spouses on other benefits or not working will claim as soon as PIP is awarded, regardless of the genuine hours of care being provided.

Ideally, the amount should be much increased but evidence of care beyond companionship, shopping etc...is provided.

Shopping and companionship is genuine care. If there is nobody else, the local authority has a duty to meet people’s needs and it includes food prep and emotional well-being.

It was taken advantage of with people getting it who provided no care or very little care. An hour or two a week. This is unfair on all the genuine carers.

to be fair, I know of people who get it for caring for their parents and it involves shopping and cleaning the house. It certainly nowhere 35h/week and bears no resemblance to a care I provide for my severely disabled DD who is living with me.

I sometimes thing there should be some differentiation about what different types of carers do.

Yanbu it's disgraceful especially for those looking after a person who requires 24hr care.

I sometimes thing there should be some differentiation about what different types of carers do
Without a doubt there lies the problem with the care bill.

I gave up work due to my sons needs, I am university educated.

My ds gets hrm and hrc, he has since he was three years old. When he was awarded it was under the category of severe mental impairment, he has autism. Imagine at three years old your child being labelled with that. He has to have constant supervision by at least one person in school, two out of school. As per his ehcp. I can't take him out on my own now, it's too difficult and he is getting bigger and stronger. He wakes at all hours of the night, every night and always has. I haven't had a full night sleep in over ten years as even when I'm on respite for the odd night away to rest I'm so used to not sleeping plus I'm worried about him. I won't go into detail about his day to day needs other than that. CA is a joke.

Yanbu, it’s a disgrace

They won't get it for their parents unless the parent has Dla or PIP before old age or Attendance Allowance which an older person cannot get unless they have significant difficulties.

YANBU OP. I get it for my son, who is in year 1 at school.

Yanbu it's disgraceful especially for those looking after a person who requires 24hr care.

exactly. Esp those who live with a disabled person that cannot be left unsupervised at all and who provide care far in excess of 35h are completely screwed. And I don't understand why these carers are getting the same rate as someone 'only' providing 35h by looking after someone in s different household who can be left unsupervised.

Totally different ballgames.

to be fair, I know of people who get it for caring for their parents and it involves shopping and cleaning the house. It certainly nowhere 35h/week and bears no resemblance to a care I provide for my severely disabled DD who is living with me.

Do you think it would cost more or less than £67 per week for social care to regularly assess these people, and to provide paid carers to do this? Given that if their parents are in receipt of qualifying benefits then they have significant support needs.

I don't understand why carers can't just go to the disabled person directly unless they choose otherwise. It's proven that they need that care, so it should be up to them to allocate the funds that would pay for that care. Which would also mean raising the amount given to be in line with minimum wage.

I had to leave my job as my son's disability meant he needs the consistency of me doing the school run twice daily. He has multiple specialties he's under so has a lot of appointments, which would mean time off work. It's unsustainable in all but a 0 hour job, which I've done previously and found the stuff about it being flexible for the worker as well as the employer is absolute rubbish. It's flexible for the employer and the worker is expected to bend over backwards to meet that flexibility. So even that isn't sustainable.

I'm currently self employed and during this Christmas busy season have had to increase business expenses in order to keep to the earnings limit as I can't afford to lose it knowing that I'm only over that threshold for a matter of a couple of weeks. My caring responsibilities haven't reduced (if anything the Christmas hype means they've increased as his needs increase) but I'd be at risk of losing it all for going a penny over the limit.

I think it needs to be seen in the overall benefits context.

Yes that's an absurdly small "salary". But if it's topped up with benefits to cover rent, council tax, other bills etc then it's probably fair, given many will also have another earner in the household.

And even single parents who work in caring and other low paid work will be in a similar position I'd imagine?

It can't be easy though and I have big respect for anyone in a paid or unpaid caring role.

I know of people who get it for caring for their parents and it involves shopping and cleaning the house

I'm sure that's what people thought about my 'support' for my elderly relative. They didn't know the half of it. I could spend 20 hours a week 'just' on the phone either to them listening to their problems or to other people on their behalf. I sorted out meds, planned meals, shopped for meals, cooked meals, cleaned everything, sorted laundry and bedding, spent hours listening to them talk in person about their needs ...

Then I spent more hours on the phone to family members keeping them all up to speed.

I could get calls at 2am or 2pm. I was on high alert 24/7 eventually.

It was full on.

So I can see how this hidden women's work isn't fully appreciated.

Do you think it would cost more or less than £67

if you go shopping a few times and do some cleaning it does not add up to too much. Ans usually these are disabled people who do not need 24/7 care/supervision. In that case, it is fairly easy to hold down a job. But if you are a parent carer as yourself, you know the situation is completely different. I think people like us deserve far more as we provide way more care and as we have children for whom there is no wrap around or school holidays childcare - we are effectively pushed out of work. Ans tbh, with our kind of caring load, most would not have the energy for a full time job unless you get respite care. I have been working for years despite DD's needs and I never managed to get respite or a carers assessment. but this is a different thread.

Most of my day as a carer is companionship . I remember my young carers support worker telling me when I was 14 that it was that that others would never understand .

Most people think caring means you’re running around to appointments, washing and dressing or cooking dinner .

In fact I spent most time and still do listening and emotional support . That’s always been much, much harder and more draining and why I struggled to keep a job - because working and then coming home to mum in tears or angry or anxious ... and trying to calm her down is exhausting beyond belief .

That’s maybe something we all do for family and close friends from time to time... but when it’s every day, and every week ... you’ve always got another meltdown or panic attack or 111 for urgent help and you’re trying to help with flashbacks, suicidal thoughts, it’s very tiring . When you want a moment to yourself you have crippling guilt and you think, what a horrible daughter I must be to be tired and angry .

Thats impossible to provide evidence for !

RE carers assessment - I had one years ago as a teenager but can’t remember it making any difference sadly . I do get emails from a carers support group but none of it feels relevant; it’s much more to do with older people or parents . There isn’t much for people in young adulthood, it’s very isolating . I remember that they said they wanted to do a group for 18-35 but didn’t get funding .

DM gets help from OT but no idea how long that’s lasting and what’s next, Dsis is in FT care now thankfully although still play a big role in supporting her (again emotionally and sometimes practical stuff eg meetings, reviews, legal things) ... DGran’s needs are only increasing as time goes on, she said if she needs help she wants to be in a care home. It’s just knowing when that time is really .