or naive, to be so shocked about carers payments?

[boschy]

My DM, aged 83 gets lower level attendance allowance. Her mobility has significantly declined recently so I spoke to Age UK about the chance of increasing it.

To get higher level, a princely £80 per week, you have to have someone in the house all night, and ideally apparently sitting up with the person, rather than sleeping in the next room as I have been doing.

To get carers allowance, another magnificent sum of £59.75 per week, you have to provide care for 35 hours per week - oh, and if you earn more than £100 a week you're not entitled to it anyway. And its taxable.

I always knew carers got a raw deal, but this just absolutely takes the piss. I love my mum, and I am doing 35 hours caring a week at the moment, the fact that I wont get the allowance wont stop me of course.

I am just so so shocked at the low level of the money. How on earth does anyone manage to survive?

I hope that as she gets better her mobility will improve and I will be less involved - but carers of the world, I salute you.

It is so hard to live like this

DH and I went from both working fulltime to him becoming my carer because I became severely disabled. He does everything for me, everything for the children and everytime around the house. He is amazing but being a carer means he's almost worthless in a lot if people's eyes

When I think of what my care needs would cost if my DH were not here to provide them the £60 seems just insulting

Yes - upwards of 700 to 900 fees per week for a care home.

66 per week if you look after your elderly relative yourself. Not to mention the loss of your own career/earnings/health.

Some of us have been caring for elderly relatives for upwards of 20 years, as well as working, bringing up children, supporting older children through university.

We are the sandwich generation and there is no end in sight.

Op you don't need to stay awake all night or be in the same room . However you do need to provide care in the night eg helping your small with her toilet needs or taking medication or turning her in bed. Just being in the house in case your dm needs you is not enough.

Yanbu. When it comes to caring and disability allowances I'm ashamed to be part of this country. my mother is my nanas carer, without her the state would have to care/rehome/transport her- they must be laughing all the way to the bank when families pick up the caring bill That's not to say that I don't think it's a families responsibility to care for their loved ones, but when the government force caring for family as a single occupation (as others have mentioned, you're not able to have a job /study around their carers pittance) then they should at least pay adequately for it. Oddly, my nan has plenty of money- decent pension, winter allowance (despite being able to pay bills herself) free bus pass etc.. Mam wouldn't take money from her mother who no longer recognises her, why are the government so keen to fund the elderly while stuffing the people who care for them ?

It's a disgrace. Carers save the government millions upon millions of pounds every year and they get treated like shite. It's even worse under this government with the bedroom tax and caps on benefits that have affected many disabled people and their carers.

Thank you for posting about this, I really had no idea it was so bad and it fills me with worry to think about if I or my husband or one of my children needed care now- or indeed my parents.

As someone up thread said, the idea of Child Carers should make us hang our heads in shame as a society.

Carers are amongst the most deserving but the least recognised. This is awful.

OP please get benefits advice from an advice service as you may be entitled to carers allowance. You need to care 35 hours or more but emotional caring, phoning etc can all be included. It doesn't have to be hands on. The stricter criteria are for her to get AA and I wonder if an advice agency could get her level increased by properly answering the questions - you need to think of what she is like on worst day so it does feel a bit negative . This used to be what I did for a job but several years ago so don't want to give detailed advice but please please ask someone qualified and experienced. CAB or law centre or local authority advice centre or local disability rights centre?

Yep, it's the sad truth unfortunately.

2 of my 3 DC are disabled, the youngest severely so.

My husband works all the hours God sends to provide which means all of the children's care is solely down to me.

There are no specialist childminders anywhere in our area, no specialist babysitters etc so no additional help, and I get the grand sum of £61 per week, in total for both.

The amount of care my youngest alone would need would cost the government in the region of £40,000 per year should anything happen to us, which makes the carers allowance laughable if it wasn't so bleakly depressing.

Carers allowance, it's not fit for purpose

No automatic enrolment into a pension scheme, so after a life time caring for a disabled child, the state pension apparently is sufficient for Carers but apparently not sufficient for everyone else who can have the opportunity to work

No sick pay, if you go into hospital sick your Carers allowance will stop because you are no longer caring

If your child's DLA stops because of a long spell in hospital your Carers Allowance is stopped despite saving the NHS money by continuing anyway to do the caring in hospital

If the person you care for dies, you have 8 weeks to get over your grief and Carers Allowance will be paid for these 8 weeks , then it's onto the job centre. being on Carers allowance long term means that you cannot claim contribution based job seekers allowance , you have to claim income based job seekers allowance and some people will be not eligible to do this so will live off their savings. If are you are over 50 worn out grief stricken and de skilled Good luck with the job hunting. No re training bursaries are available for people who have spent their working life as a Carer.

It's an absolute joke.

And I am still laughing at the 2£ increase to the earnings limit for 2014!

I am a single parent carer of a disabled child and I can't work. I care for far more than 35 hours a week! But I should point out that the government don't expect you to simply live off the £60pw CA. It's a condition for getting Income Support so I get that on top (although CA is deducted, but then a premium is added on), and I also get full housing benefit and council tax benefit, and child tax credits with a disability premium. So it's quite a lot more than £60pw, and it does cover our costs (we get various other payments through grants/charities as well to help with living costs and activities). Before I managed to get DLA approved for my dd, I was just living on the basic amount of IS/CTC without any disability premiums or CA and that was a real struggle, I have more than twice as much disposable income now. I think it's really harsh that single mums are expected to live on so little when it's just as hard to find work.

There is very little help though for those with caring responsibilities. I'm doing a p/t distance learning degree which is funded but realistically I don't know if I'd ever use it to get back into employment. I can't see dd ever becoming independent and as I had her quite young, I'm likely to end up reaching a grand old age having never been in paid work. And I fully expect to be getting just the state pension/pension credit, although again that's actually higher than the minimum amount needed for single mums to live off so I expect I'll manage to cope financially as I've done it before.

I forgot.. No redundancy payment either.

wheelsgoround
Some Carers find themselves just above the income support level so are not eligible for IS , they are not eligible for housing benefit as have a mortgage so not paying rent, they are not eligible for Mortage interest payments. Child tax credits do currently help those with disabled children , when your child leaves full time education CTC stops but you are still caring for your"child" who cannot work, he or she still has extensive needs and costs and their DLA can be stopped following hospital stays which will stop the Carers Allowance payment.
The situation will be even worse when Universal Credit is introduced as some families will face huge disability costs but will be not be eligible for even the disabled child tax credit component because of capital rules. These families will have to make a choice of one parent giving up work to care for their disabled child and get the princely sum of 59£ a week approx, they will have to spend any capital they have until they come within the remit of Universal Credit. For some this will mean spending the deposit they have saved for buying a house and never getting on the housing ladder.

god its such a pile of shit! why should people with these responsibilities (and I dont really count myself among them, given that DM is 83...) have to struggle so much? why should life be so hard, so much on the financial edge because of a life situation? which is of course leaving aside completely the emotional and physical stresses.

if the finances were better then maybe carers could live rather than just exist, which must surely be better for the carer and the cared for? I seem to remember Princess Anne is patron of one of the carers' organisations, anyone know which one? (I know I could google but just back from 3 hours caring and need to rant/whinge to deflect the adrenaline whilst having a and a cigarette or 20)

It is right on the point of being laughable isn't it.
A good friend of mine has two children with disabilities and, as often happens, her dh walked out.
Her life is just relentless. It really is.

And I do know I am lucky to be able to escape for an hour or three a couple of times a day - some have no such respite. on the other hand, during that time I try and catch up on domestic life/feed animals/see children and husband/put washing on etc etc etc and if she says she doesnt need me tonight then I will be working as I've done very little for the past 3 weeks and deadlines are approaching. cant afford to lose my job because DM is ill...

Www.carers.org I think it is

Why can't we have some joined up thinking?
An agency fee to care for my son is £20 .70. Why not pay family Carers the minimum wage? That's quite some saving for local authorities or the NHS.
It will make so many lives better and help solve the care crisis.

That's £20.70 an hour going to care providers
Pay Carers the minimum wage for 35 hours. It will help the economy. As this money will be spent and will circulate not saved.

My BIL is severely disabled, and his family now claim Direct Payments to care for him. I'll admit up front that I know only the barest minimum about this, but the money he receives is tens of thousands each year, which is paid to those family members according to the hours that they're caring for him. Effectively, caring is their job, and they are paid better for doing this than the old NMW roles that some were previously doing. If there is anyone for whom this system would work better, then I thought it worth mentioning, as it seems that it is not well publicised.

Carers save the government nearly £119 billion a year. To put that into prospective the national total bill for the nhs is nearly £99 billion.

I was told by a colleague last week after asking for flexible working - if it's getting too much for you then you should stop working and claim benefits

Unfortunately wheels I won't get full council tax benefit and I will not get full housing benefit. I will still need to find my full mortgage payment.

It is an utter joke.

My situation is similar to stickyfeet's in that I gave up a very well paid career when my son was diagnosed with cancer because he needed me at his beck and call. I cannot work now because I am pretty much unemployable - the nature of his treatment means that, as a minimum, I would need to have one week off in every four and be available to take him to hospital at the drop of a hat. I would be a completely unreliable employee and I wouldn't employ me to be honest.

I am lucky to have a supportive DH who works many hours to support us but it is still very hard. I have a professional qualification that means I could do some locum work on occasional weekends when my son is well enough and my husband can look after him, but then I would earn more than the £100 limit for that day of work and lose the CA, so, really, what is the point?

And the fact that it is taxable and carers don't even get free prescriptions makes me sick. If my DH had become disabled CA would be our income and that is bloody terrifying.

Lemon

Direct payments cannot be used to employ spouses parents or close relatives who live in the same household as the disabled person. You can buy care in and that does help some families with flexibility. It is a way of saving money as the parent effectively becomes an employer, recruits, sacks, does the tax etc and is paid nothing for these admin duties and also can be taken to tribunals. You can outsource the admin and pay for a company to do the tax etc

35 hours a week my arse.

try 168 hours a week.

and all for £55 .

also a fulltime carer here of a lifetime lifelong disabled child.

OMG.

It is threads like this which make me so upset and angry for people in this situation through no fault of their own.

How the fuck, in 2014, is this allowed to continue? How the fuck is the myth STILL perpetuated that carers are living some life of Riley on a month for doing nothing?

Who voted for this? Did any politician ever solicit your vote on the basis that they would ensure the impoverishment of the disabled and their carers. Thought not.

And all this from a leader who had a disabled child....oh sorry, he also could afford full time nannies and nurses and carers couldn't he?

just so he could ruin- er- run the country.