Mencap's policy team would like to hear about your experiences of accessing Carer's Allowance.
If you've faced any challenges or issues with any aspect of getting it, we'd like to hear about it, and how that made you feel.
Any insights or quotes may be anonymously used in engagement with the government to show the impact that Carer's Allowance has on the families of people with a learning disability.
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Maurice_Mencap
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Because my daughter was on the lowest for Disability Living Allowance I couldn't claim Carer's Allowance. When her disability progressed and she is now on PIP I couldn't claim because I was retired! I've only ever been able to work part time because of all her hospital appointments, then we had to build an annex to accommodate her because she couldn't cope living on her own, and even now we subsidise her - it has cost us thousands!! I personally would say trying to get any financial help, either from the Government or our local Council has been difficult at best, impossible mainly.
Sorry to hear that, Buddyh , would you be happy to share that with our policy team? Also if you feel you need some support with any aspects of claiming financial help, get in touch with Mencap's helpline team on helpline@mencap.org.uk.
Awful experience, I could only work Part time, minimum wage. Our Adult Son lived independently, with no support apart from first point, no Asperges support, he had his Bills to pay, I received £55 a week & they took same from his Benefit. Because I got a Bonus a couple of times from my job Co op Cashier, they made me pay every penny back, this caused us hardship. Years later & currently, I had to give up Working, as Son went into Psychosis & I'm 24/7 Caring for him, he still has his Tenancy, I don't even both claiming Carer's Allowance, its too much trouble! The stress we are already under with Son's health issues, diagnosises including CPTSD. Now he is about to receive his s117 Care Package & a Mutual Exchange finally happening. My husband has had to use a few Credit cards, just to keep our home a float, not for indulgence or buying things, not even had a Holiday for many years now. Hope the Gov sorts this system out. Unpaid Carer's, Should receive funding & not come from Cared for Benefits. We save the Gov Thousands if not Millions, the hours we do & do not get a break.
Hi Mybestfriends , that sounds like you've had a terrible experience, the issue around the bonus payment as well is really shocking. Are you happy to share what you've written with our policy team? Also if you feel you need some support with any aspects of claiming financial help, get in touch with Mencap's helpline team on helpline@mencap.org.uk.
I applied for it as I care for my daughter. It was straightforward as she was on the middle rate of DLA. I'm not sure what will happen when she has to transfer/apply for PIP when she's 16 in October.
I have been claiming carers allowance for my disabled daughter since she was 3 years old and claiming middle rate DLA. It was pretty straight forward as I wasn't working and was caring for her for at least 35 hours a week. When my youngest son started school I got in touch with the DWP and said I was starting a part time job. They said I could claim as long as my earnings didn't exceed a certain amount.
I continued claiming without any issue throughout my daughters childhood into her adult years.
Two years ago when she moved into supported living I asked if I could continue to claim and the advisor said as long as she was claiming a qualifying benefit and I continued to provide at least 35 hours a week care which didn't just include personal care I could continue to claim it.
Because she was coming home every week for at least 3 days & was also responsible for other aspects of her care I was easily exceeding 35 hours a week. I continue to work 13 hours a week over 2 days which is under the amount I am allowed to earn.
The only issue I have experienced happened shortly after my daughter went into supported living when extra hours I had claimed for over 2 months before dummer break hadn't been submitted by my line manager. Instead my claim was submitted in the September on our return back to work.
I hadn't realised and the following month shortly after being paid, my carers allowance was suspended as I had gone over by about £60 over the month.
It took 6 months to have my carers allowance reinstated after having to send in emails from HR & payslips for at least 3 months to show that the nature of my job meant my salary could change from month to month. It was actually my line manager who was at fault however and I now am more likely to claim time off in lieu rather than claim for extra hours. I also inform HR if we are likely to receive any bonus to let them know not to exceed the amount I am allowed to earn.
To be fair after 6 months when my carers allowance was reinstated I received 5 months carers allowance in back pay. I only lost the first month when I had exceeded the amount I was allowed to earn.
Hello Bergersil400 , thanks for sharing this, glad to hear your issue was sorted, although a little more understanding here could have probably avoided the situation altogether. Is it OK to pass on your comments to our policy team?
hi I have never claimed carers allowance “never matched the criteria” despite providing care both day and night (not 24/7) but as required but my mother-in-law has which was stopped at retirement age yet she still cares for my brother-in-law aged 80!! How can that be right??? The amount of money it would cost to care for just mine and her son if we were to “hand them over” to the system would be huge!!! Also I’ve always wondered is the maximum you can earn plus carers allowance equivalent to the living wage for an adult over 25???
The amount you can earn for this year before you lose carers allowance is £579 a month. If you add carers allowance which is £81.90 per week that gives you an income of £327.60 +£579= £906.60.As the living wage is around about £11.50 an hour, it isn't equivalent to living wage.
I think carers allowance on its own equates to about £2 per hour.
On getting beyond retirement as I will be retirement age in 4 years time, they said because the full pension comes under same department DWP it is classed as a benefit but pension worth more money. Not sure whether same applies if on reduced pension and claiming pension credit.
Just would like to give you some feedback on carers allowance. To start with it’s really a nightmare to apply for, hence many people just give up. If we are carers, we can’t waste our time making phone calls and having to wait to speak to someone.
In addition, I retired earlier last year in order to care for my son who came back home and needs my support. I used to be a teacher and this year ( going to cut the story short) I was asked by my old school if I could really help them out for few weeks with GCSE and A level students ( am a very experienced teacher) as one of my ex colleagues needed an operation. I was reluctant at the time but as they accommodated me, knowing that I was a carer, I accepted. I was only £6 over one month and they decided to stop my benefits. Still waiting for it to be reinstated. We made several phone calls and still not getting anywhere, very disappointing as I mentioned earlier, people don’t have the time and energy to waste when they are carers.
Hi Barbado , thank you for taking the time to add your experiences. I'm sorry to hear about your situation, it must be incredibly frustrating. If you feel you could do with some support or assistance, you can get in touch with our Learning Disability Helpline on helpline@mencap.org.uk.
Is it OK if we pass on your comments to our policy team too?
Thank you for your reply Maurice. Do please pass my comments to your team. I am very sure that many people must be in a similar situation. I have heard that someone was 20.p over and havs been penalised, ridiculous. Will just be patient and wait for it to be reinstated now it’s over 5 months and 3 phone calls ! However I really feel sorry for people who depend on this money and can’t make ends meet .
I worked part time as a staff nurse 10 hours a week, term time only and was able to receive carers allowance. Every time we got an NHS pay increase we would not receive it straight away every month like most people but get a back dated lump sum of what we were owed several months later. This would put me over the limit for that month, so my carers allowance would be stopped for 6 weeks. I tried explaining to them that this is how the NHS pay award works but they wouldn’t have it so I would be a lot worse off. They made me feel like I was a criminal.
That’s what you get for being a carer working in the NHS.
I found carers allowance to be extremely stressful!
Thanks for replying Beansprout1 , it does seem to be a common theme amongst carers and does seem to be a big flaw in the system. Is it OK if I pass on your thoughts to the policy team?
My husband received carers allowance for being a full time career to our son. No difficulties in claiming however once he reached 66 carers allowance stopped as he received state pension. He is still providing the same level of care to our son and our son continues to receive highest care element of PIP so seems a little unfair to stop carers allowance. If he was continuing to work after he claimed state pension his employer wouldn't be entitled to stop his salary
It does seem totally unfair, once retired you receive same amount as those with no full time caring responsibilities. I don't know why the carers allowance is stopped, DWP says because a pension and carers allowance are both benefits, but if that's the case, why can a person cared for with disabilities claim both a pension and Attendance Allowance?
Hello Bertha2 , thanks for sharing this, that is an interesting point that I wasn't aware of. Would it be OK if I shared this with out policy team? I'm sure they will know this already, but it's always good to have a real life example to show the powers that be to illustrate where things may be falling down.
I receive carers allowance and have since my son was small. No one told me it existed so I missed out on many payments until another parent mentioned it.
I have struggled to work at all as the number of hours I could do before earning 'too much' is tiny. I did find some casual work in a school and carefully kept my hours below the earning limit - only to find I was entitled to an amount in lieu of holiday pay which took me over - so ultimately I lost money and was working for nothing.. after that I made sure to work even fewer hours so there would be a buffer in case something threatened to take me over the limit.
At one point someone saw my situation and thought I was scamming as I was claiming and working at the same time - and reported me to benefit fraud - I received a really scary letter dictating when I had to be available to take a call or I would lose my benefits immediately. This panicked me and I worried a lot. As soon as the call began they open and shut the case as of course i had informed them I was working and they had copies of my payslips, I had done everything right and everything was above board - but it was a horrible experience and also horrible to know someone I know 'dobbed me in' when carers allowance is a joke amount to live on. I am angry they are wasting money on encouraging people to report others instead of concentrating on helping people who need help. In the end I stopped trying to work and be a carer when it was so hard with the way carers allowance is so easily stopped.
a few years ago I was widowed and received widows allowance for year ( now defunct benefit) - because it is obviously completely impossible to be both a widow and a carer ( hahah!) my carers allowance was stopped. Technically not stopped... I just was awarded 0. So on the books, I received CA whilst not getting a penny of it. When the bereavement support finished my carers allowance returned.
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