WIBU to take this much from DD’s benefits?

[BlueLines81]

My DD is 19 and has a disability, she is not able to work and won’t be able to for the foreseeable. She receives PIP.

As she’s no longer in education, I was not entitled to claim benefits for her from the end of august this year. My tax credits went down quite considerably, and lost CB too, and all of my housing benefit. All together I am about £190 per week worse off. Which isn’t great as I am a single parent and also have a health condition (I receive low rate mobility PIP), and I had to give my job up in July as I couldn’t manage it anymore, so that’s another £1000ish per month down.

I am self employed and doing bits and pieces where I can, to give you an idea I’ve managed about 12 hours of work this month.

I did an online calculator in august and it looked like I would be better off on UC, and also needed to start a UC claim for DD, so I claimed for us both on the same day. We had an appointment at the jobcentre for DD’s claim a couple of weeks ago, and the advisor suggested that I become her appointee and I could have her UC paid into my account, if we felt DD didn’t have the capacity to manage it herself. I asked DD what she thought and she said she’d rather it was paid into my account. I am getting fit notes for both of us from the doctor and and hopefully we will both be entitled to the LCWRA elements.

The idea of being an adult and having to pay bills terrifies DD, mentally she is more like a 12 year old in a lot of ways. I have spoken to her about it and said the options are that either we work out exactly what her share of rent and bills etc would be and she just gives me the money for those, and she can arrange her own food shopping etc, and pay for herself if she wants to come on holidays etc. Or I keep the amount that I’ve lost in benefits for her, she can have whatever is leftover (which I think will still mean she’s better off than she is now with just her PIP). And then she can carry on essentially being a child for as long as she wants (I don’t mean this negatively, she regularly gets very tearful that she’s not a child anymore). She liked the sound of that option better. She just doesn’t want to have to think about finances at all.

But AIBU to take this much money from her? I don’t know the exact figures of what I’ll have lost until we get our first UC statements in a few days, but will probably be at least £150 per week. I know this a lot more than a lot of people take from adult children, which is why I feel bad, but then maybe they have a partner or are just financially in a better situation than I am. Realistically she’s going to be living at home for many more years to come.

You are being ignorant. The fact you can’t see OP’s DD needs support in excess of a typical young adult OP’s needs shows a lack of understanding. For a start, OP’s DD wouldn’t have an EHCP if there weren’t additional needs. It isn’t for you to decide OP’s DD could manage her claims herself. The DWP have appointed OP as appointee therefore they believe her to be unable to manage her own claims.

She's asleep 18 per day apparently. Given what the op's posts state she is actually able to do, I'm not sure what other than the standard parental roles the DD requires in the 6 hours awake. Isn't it the norm to run about after your kids, cook, heat the home for them etc?

Not after 18 no. Many young people are working or at university and looking after themselves to a large extent.

@Meadowflower2023 ok I’ll bite. So just taking the last week as an example (and this is just in relation to DD1, not my other child who has additional needs too and has taken up even more of my time over the last week).

1. took DD to the jobcentre for her UC appointment, 17 miles away, as this is something she wouldn’t be able to manage alone. Had to pay for fuel and also pay for my neighbour to puppy-sit in order to be gone for a few hours.
2. have been to the supermarket twice to do food shops, buying the specific things that DD likes to eat (which aren’t cheap) due to having a restricted diet because of sensory issues.
3. organised a trip to a theme park for her birthday, which we couldn’t do in the summer holidays as she wouldn’t cope with the crowds. She still expects a ‘birthday party’ as I’ve discussed before she has no desire to be treated as an adult.
4. ordered a repeat prescription and gone to collect it for her.
5. been to post parcels for her twice.
6. phoned to arrange her next appointment relating to her surgery.
7. her pet cats - which she desperately wanted for a long time and have been massively beneficial for her, have cost me £60 in monthly pet food subscription, £85 in flea treatment and £40 in pest control because of the rat they bought in but decided not to kill, in the last week.
8. £70 on a driving lesson and £20 to take her car to get it cleaned before her driving lesson.

That’s on top of having to do everything around the house single handedly, and do as much work as I had the energy for. So not all of those things cost money, but many of them are things you wouldn’t have to do for an average 19 year old.

Yes, if they’re also an appointee that makes a difference, but there’s so much misuse of motability vehicles that trackers are the norm, as is the requirement for the car to remain overnight at the claimants’ address. In my capacity as benefits adviser I’ve come across motability cars being used as private hire taxis by nominated drivers and worse - and it’s always the claimant that pays the price.

The OP’s DD qualifies for the higher rates of PIP, which is paid in respect of additional costs of living with a disability - these costs are not necessarily limited to extra care costs but the cost attached to every day life with a severe disability, which is considerable You are misunderstanding what PIP is based on and given the limited facility here to explain, I can only suggest you visit me of the many disability websites which explain in detail the extra cost involved and how PIP is designed to help. And the fact that other people of the same age as OP’s dd are financially dependant is irrelevant - this is a specific requirement of the use of a motability vehicle, so not applicable in any other circumstance.

Benefits advisor at the job centre or CAB etc?

You can get prescriptions delivered from the chemist - that would be at least one less thing you'd have to worry about. I get mine delivered all the time. (I know I said I was leaving, but I hope you find this comment helpful)

If they're her pet cats then surely her money should be paying for them, not yours?

Also I'm nearly sure you can buy postage online and get the items collected by the postman, which again would be one less thing for you to do.

I agree, some are misused. I just wanted to point out sometimes it is agreed the car can be kept at an address of a driver that doesn’t live with the disabled person.

You say that you have applied for UC due to your own situation. Down £1000
On reduced working hours
I may be wrong but I don't think the amount you wil get withl uc will cover all these extras
You will get a set amount for being a single mum with 1 child and 1 adult who is dependant - you may get an amount for housing costs if you need it ( rent ).
You will get a set amount and deductions will taken off for any thing that you earn- savings etc
Both of you will get your pip payments as extra.
If you claim carers allowance it is does mean you get extra each week but it is deducted from uc and you can't earn more than £100 a week ( approx)
You can have £6000 in savings that isn't included
You should get a reasonable amount
But please be prepared that the point of uc is cover the basics
Utilities- food shop etc.
It will not cover lots of trips petrol costs etc , pets , special dietary needs.
Trips out etc.
I assume from this level of expenditure that you had a really well paid job?
Or credit cards or may be lots of savings.
Unfortunately universal credit is only designed to cover the essentials .

If the OP claims carers allowance it will be deducted from UC but she will get the carers element of UC added on. She would be allowed £136 in weekly earnings before CA eligibility is affected. It should be noted that claiming CA gives better NI contributions than on UC so important not to render herself ineligible. Also important to note that if she is a carer there will be no compulsion to work.

Worked in benefits for several years then went into welfare rights. Medically retired and since then have done what I can voluntarily with the organisation specific to my disability, including being on their advisory committee during consultations in preparation for the introduction of PIP in 2013 and helping out with PIP applications/appeals on behalf of members.

I've read your list a few times and struggled to see how it could have taken a whole week to complete if I'm honest. Very standard but then if you're unwell yourself I can understand it may take longer to do a few errands.

100% knew this reply would follow after my last post, so predictable and really not worth the bite.

She was eating pizza yesterday, they hardly cost the earth. You also mention food deliveries in previous posts. Maybe this could/should save you time. You contradict yourself in so many posts. I do know about sensory dietary requirements to some degree and in my experience seldom does it cost more than an average meal, mostly very repetitive.

You know you really shouldn't ask for peoples opinions if you're not prepared to listen to the odd person disagreeing with you.

I do know about sensory dietary requirements to some degree and in my experience seldom does it cost more than an average meal, mostly very repetitive.

You clearly don’t! For some, their restricted diet costs significantly more. Pizzas come in a range of prices from cheap to expensive and you do not know where on that scale OP’s DD’s safe version lies. Nor what else is on her safe list.

@Meadowflower2023 I don’t believe at any point I said those activities took me a whole week? I also have another high needs child to look after and everything in my own life that needs to be done. I was giving examples of things I’ve done for DD over the last 7 days that most 19 year olds would be capable to doing for themselves, or wouldn’t need doing at all.

A lot of ignorance on this thread about CFS, I see.

chronically fatigued FFS! It's not tiredness. It's not normal fatigue. It's another way of saying M.E. It's a real disability and can affect your mobility.

Oh please!! What are we talking max £8 for a pizza? Why dont you get off your high horse telling me what I do and do not know. I may not know the benefits system but you have zero and I mean fucking zero idea what I know about complex dietary needs and the additional costs generally relating to this especially with OP daughter's diagnosed health problems and then some. Downright rude!

I don't think people are ignorant of the fact she has CFS. It's an awful debilitating condition when it peaks of that I'm sure. I don't recall posts saying she hasn't got this condition or is just tired and doesn't need help financially because of it.

The OP asked WIBU to take recent lost amount from DD benefits (or something similar along those lines) I hold my hands up and say I was totally ignorant that this was allowed as it didn't seem fair... I just thought it did seem too much to use from DD benefits even after the explanations but apparently you can and it's not frowned upon at all so she can carry on with her proposed plan without worry.

Fair enough.

No I won’t. It is clear from your post you know little if you think ‘seldom does it cost more’. If you don’t want people replying to you pointing that out don’t post nonsense on a forum.

Using your example of £8, that is £8 for one meal for one person. Which is clearly more expensive per person compared to other meals. If DD eats one a day (or something of a similar cost per day for dinner) that is £56 a week before you consider any other meal, snack or drink. Clearly that is significantly more expensive than most families would spend on one meal a day for one person. If you add in lunches, breakfasts, snacks and drinks it could easily be over £100 per week for 1 person.

@OvertakenByLego well you really are very predictable. Basing a whole weeks meals on one £8 pizza or similar valued item is a rather simplistic approach. No one is that daft they wouldn't account for days it would be less. It really wasn't that clever to do the math. Also who would begrudge her £100 pw for food, if DD has the money coming in (and it sounds like she does/will) then that is exactly what the benefits should go towards. I don't think it's an unreasonable amount.

With respect, you are totally missing the point of my comments.

I’m not missing your point. Your point was clear when you posted “seldom does it cost more”. No one is begrudging £100pw or more, I was merely pointing out you are wrong if you think a restrictive diet doesn’t sometimes cost more. There may not be days where it costs less. Some with restrictive diets eat exactly the same day in, day out. Even if OP’s DD does eat different foods each day, they could be equally or more expensive. It was an example to show you it can cost more.

I think there’s a general lack of understanding as to how much living with a disability can cost, and that this is why PIP and similar benefits are paid - they are cost related and the assessment tries to determine what level of support is appropriate for the severity of the condition.

It’s also worth pointing out that while someone is living at home, it’s not unreasonable to think that the major part of a benefit like PIP would be used by the parent because they are essentially footing the bill for the extra cost. If dd was in supported living or similar, the cost to the taxpayer would be considerably more, and this is why carers like the OP are so valuable and under rated.

I don’t think it’s particularly helpful for posters to be trying to outwit the OP and pull her up on the posts detailing what she does for dd, or the cost, because without an appreciation of what’s involved with the disability there’s no way to know - similarly those casting doubt on the veracity of the claim really should realise that if the claim has been properly assessed, the DWP are the judge of eligibility as they will have all the necessary information on which to base their decision. Obviously they have done that, and awarded benefit, so it’s not really up for discussion.

Thank you @Rosscameasdoody and @OvertakenByLego. I don’t think people who have never been through it have any concept of the additional work of having DC with disabilities. Aside from the costs, there is a huge amount of energy given to keeping them in an OK place mentally, having to fight at every turn to access any kind of support, with everything cut to the bone as it is. And the endless admin, form filling, phone calls, emails, appeals etc etc that goes along with it. Having to do it all on my own x 2 DC, with no break ever, for many years is part of the reason my own health is so bad now, stressful doesn’t even begin to cover it, it’s a lot of weight to carry for one person.

Today I have woken up with my own symptoms particularly bad, DD1’s alarm has gone off multiple times but she’s still out cold, so I’ll have to go and get her up and make sure she’s ready for her driving lesson. DD2 is school refusing (again), so I’ve been having email conversations with the school about that, and had to deal with meltdowns from her. Just a snapshot of one morning, I really am living the dream here with all my ‘free money’.

@OvertakenByLego I am pleased you popped the word sometimes in there as this isn't always the case and seldom in my experience. Why are you trying to teach me to suck eggs* on this particular matter? The children/adults I've worked with have rarely* had extortionate food tastes at a daily rate. I can't engage with you anymore.

@Rosscameasdoody it's up for discussion as the OP asked a WIBU question on a social forum about her recent loss's and her DD benefits.

Whatever benefits have been awarded is absolutely fair enough, you respond like I have a problem paying my taxes towards this, I certainly don't at all. l and wouldn't if she was in assisted accommodation either. Carers are worth their weight in gold, I know that too.

I just hope OP manages to put at least some of DD benefits aside for if she does decide in 5/10/15 years time that she is ready to move out. She sounds fairly capable on some days and it could be a possibility (though thinking about it depending where she may live any extra saved money may not be needed but you never know)

Maybe not relevant but I'll add it anyway. A lad (22) who lives next to my gran has Asperger's and Autism (now all under the same title of ASD?) and severe anxiety (not CFS though) He does remarkably well living on his own and is settled and comfortable with his immediate neighbours, though this took time. His landlord wanted to sell the house after around a year of him living there, there was a short time of almighty panic for him as he was just so well settled and thought of moving was too much, luckily his parents had managed to save a fair amount over the years from his benefits to put a deposit down and they managed to get a mortgage based on his benefits/small income and buy the house. He works two half days a local community farm. It's brilliant to see how he's come on since his first tentative weeks after he decided he wanted to try living independently. He even gave everyone in the cul de sac a homegrown sunflower a few weeks ago!
Again I repeat before I get slated again no CFS as far as I'm aware.

@BlueLines81 I don't think anyone classes it as 'free money'. Sounds a truly shit morning for you, day in, day out that is bound to take its toll...wishing you all the best.