Hello, I’m new to the forum. I care for my 20-year old son, full time. I’ve been a single parent for 10 years so it’s been just him and me for a while.
Because I can’t leave my son at home on his own for long, I can’t go out to work. Instead, I work part-time from home as much as I can, on a freelance basis - but this is difficult as I spend much of the day dealing with my son’s needs (and also more recently my elderly father has become very frail and much of the week is spent remotely managing his needs too).
I receive Carer’s Allowance, and until recently I received a decent amount of Universal Credit - enough to get by. However, when my son turned 19, the child element of the Universal Credit was of course removed, and I now get just £80 a month. I’ve recently had a UC review and they have confirmed that the amount I get is correct.
So I am now existing on my intermittent earnings from self-employment, my Carer’s Allowance, and my UC. And my son gets PIP, which of course is his, but is paid into my account.
So myself and my son are living on a total of around about £18,000 p.a., which I believe is below the minimum wage for one person - let alone two. Obviously I have to buy food for us both, pay bills, the mortgage, etc.
I’m starting to feel very anxious about money as we are starting to really struggle. Trips to the supermarket are always quite an anxious time for me as the price of food just seems to keep going up. Then there’s petrol etc. Luxuries like holidays etc are out of the question.
I guess my question is, how on earth do people manage?!?
I have tried to find out if there’s anything else I’m entitled to but I don’t think there is.
How do other people get by?
Thanks.
Hi Clareg, welcome to the forum.
I’m very concerned that Universal Credit have been so unhelpful.
Does your son have physical or mental disabilities?
Didn’t they talk to you about your son’s benefits now he’s an adult??
How long is it since he was in full time education?
I know it’s difficult to think about, but one day you won’t be able to care for him any more, and so it’s really important that he has other people in his life apart from you.
Have Social Services done a recent Needs Assessment for him, and a Carers Assessment for you? Under some special circumstances you may be entitled to Direct Payments for looking after your son.
Please consider ringing our Carers UK helpline, they are really good at supporting carers to get everything they are entitled to. Long ago they made me £50 a week better off when we really needed it, so I like to give them a personal recommendation.
Can you tell us a bit more about dad? How far away is he? How old is he?
Hello, thanks for the email.
My son has autism, chronic fatigue, and hypermobility. He also suffers from very low mental health and has recently been assessed by a neuropsychiatrist. He suffers from huge anxiety and is at risk of self harm if left alone. There’s actually quite a bit more to it than this but I won’t go into more details here!
I did have a conversation with UC, who told me that my son will now be eligible for UC himself. However, his grandad died last year and he inherited some money. This took him over the threshold for UC. I don’t feel that we can spend his grandad’s money on daily living though, because it is meant to help towards buying my son his own home, if and when the time comes (which I currently can’t imagine!)
Social Services haven’t done a Needs Assessment for him, or a Carers Assessment for me. I wasn’t aware these were possible, but will look into it.
My dad is 94, suffers with severe heart failure, and lives nearly 3 hours drive away. However, he does have carers visiting 3 times a day.
I might try ringing the Carers UK helpline later today!
Thanks,
Clare Gilliam
Thanks. My son has autism, chronic fatigue, and hypermobility. He also suffers from very low mental health and has recently been assessed by a neuropsychiatrist. He suffers from huge anxiety and is at risk of self harm if left alone. There’s actually quite a bit more to it than this but I won’t go into more details here!
I did have a conversation with UC, who told me that my son will now be eligible for UC himself. However, his grandad died last year and left my son some money. This took him over the threshold for UC. I don’t feel that we can spend his grandad’s money on daily living though, because it is meant to help towards buying my son his own home, if and when the time comes (which I currently can’t imagine!)
Social Services haven’t done a Needs Assessment for him, or a Carers Assessment for me. I wasn’t aware these were possible, but will look into it.
My dad is 94, suffers with severe heart failure, and lives nearly 3 hours drive away. However, he does have carers visiting 3 times a day.
I might try ringing the Carers UK helpline later today!
Thank you.
I have tried to reply, twice, but am getting messages telling me that my post has been flagged as “inappropriate and that the community feels it is offensive or abusive”! I have no idea why, I was simply answering your questions!
There have been a few rejections, including one of mine, later reinstated, so I’ll flag this up with one of our friendly mods, all current or former carers, to sort it out. Probably AI?
@clareg1964 welcome to the forum .im sorry that youR posts have been flagged.the same thing happened to me. I think you need to ring universal credit back.You say that you get carers allowance and some universal credit £80. That the child element was removed. So is this £80 universal credit just for you. You said your son gets PIP is that all he gets. Shouldn’t he be claiming universal credit for himself now he’s classed as an adult.He is no longer on the child element so now claims it as an adult. So he gets pip and universal credit.so I would ring universal credit back up and make a claim for universal credit for him. So you have your universal credit and he gets his own as he is now an adult. You have said you have recently had a IC review and they said it was correct. But is that correct for you. Your son is now an adult so a claim for universal credit should be put in for him in his own right. Then that will go towards food ,household bills etc from him. You can also ring the carersuk advice line aswell as universal credit.
Thanks. My son’s grandad died last year and he inherited some money, which has been put into a savings account for him (even though he has no idea about money). I am able to manage the account for him via third party access, even though it’s in his name.These savings take him over the threshold for UC. So he cannot currently get any UC. I could whittle away at his savings by spending them on daily living, but I don’t feel right about doing this, because that money was meant to help towards buying my son his own home - if and when the time comes (which I currently can’t imagine!).
@Clareg1964 i think you need to ring the citizens advice bureau about your son and this money. Does your son have disability illness. I think there are trusts that this money can go into when people are disabled and can only be used for certain things and then it does not affect a persons benefits. But you would have to ask them , or possibly ask a solicitor as I know it is quite complicated. Also I thought that when you get an inheritance for so many months I’m not sure if it is 6 months it is disregarded for benefits while someone decides what to do. I think that goes from the time that they recieved the benefits. Different places have different rules. The citizens advice bureau should have information on both these things and also where you get help.
When did grandad die? There might just be time to do a Deed of Variation if within 18 months of the death. Talk URGENTLY to the solicitor involved.
Hi @Clareg1964
@bowlingbun is right, the forum software screens for certain words and if these are used, the posts need approving by a moderator. We do this as soon as we can, but are all volunteers and juggle moderating with caring etc
@Clareg1964 , it’s very difficult to budget, especially with today’s prices. Try talking to Citizen’s Advice. They can point the way as to what to do.
Thanks everyone, for your advice. I will talk to Citizens Advice.
@Clareg1964 yes talk to citizens advice ,I know there are special accounts or trusts that can be opened and the money can then not affect his benefits. But these accounts will have criteria to them . I don’t think it would be able to be in your son’s name I don’t know, and you could be the manager of it. The money would only be able to be used for certain items etc,but you would be told that. There may also be more than one sort of account. They will know. Have you also thought about using a little bit of the money for your son and you to have a week holiday in the summer. I’m sure your son would enjoy it and you would and his grandad would think it was nice idea. But that is up to you it was just a thought I had.
You really do need to see a solicitor asap. If you do, there is a chance your son can have a discretionary trust set up, before that chance has gone forever and all the money he has inherited must go on daily living!
Yes, all good thoughts.
Thank you!
Thanks. I’m a bit wary of going to a solicitor as they cost money!
The typical startup fee for a discretionary trust seems to be around £3,600…
I will start with Citizens Advice!
@Clareg1964 there is two things that you can do.first about the trust you will need to read about it also I would ring the citizens advice bureau . Is your son disabled . The trust is called .the disability trust (disabled persons interest trust) read about it, the criteria, I think you can be the appointee on it. Read what the money can be used for the criteria. It will tell you everything.
The second thing that you could do if you don’t want to do the above is see if he can get contribution based esa. Before he got his grandads money did he used to be on ESA was he in the support group. Did he migrate to universal credit from esa. The other option is if any of this is right was he in the support group because he’s ill and cannot work. If yes you could ring up I don’t know if it’s the contribution esa benefit line you need or esa benefit line but I would say the first one . You can ring that and ask if your son has enough national insurance contributions. If he has enough national insurance contributions then he can claim contribution based esa I think people can only claim it for a year, but if he was in the support group in esa before the UC there is no time limit . Contribution based ESA .what you have in savings does not count you can have any amount of savings. It is based on a persons national insurance contributions. So you would need to ring the benefits contribution esa helpline they will tell you. Contribution based esa is about £140.00 a week. But would depend on his national insurance contributions and if he was in the support group. If he can get this then his inheritance would not matter.
So there is two options but you would have to find out the information for the second one first .if he’s able to then you have a choice of the two. If he can’t get the second then it would just be the first one the disability trust .Read all about it. And then ring CAB.
Hope this helps.
Please, please see the solicitor and ask about a Deed of Variation. Time is of the essence here.
@bowlingbun would he have to have mental capacity for that, as she said he cannot manage money,so would he have the capacity to do one of those. And she said he has the money I don’t know how long you have