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 didn’t say extortionate, you said more than average. I am replying to you because your posts are ignorant. If you really do think “seldom does it cost more than an average meal” your experience is clearly limited. I can assure you it isn’t unusual for it to cost more than average.

Scope say, on average, households with at least 1 disabled person need an additional £975 per month to have the same standard of living as those without a disabled person. And if that figure was updated to account for inflation it would be £1122 per month according to them. OP didn’t ask should DD be in receipt of the benefits, she asked what to do with the benefits awarded.

OP, what support are DDs receiving via the EHCPs? Especially DD1’s preparation for adulthood provision? The EHCP can include driving lessons.

Have they had social care assessments?

@Meadowflower2023, that’s great for them but I guess that’s the difference between being a couple with disabled DC, vs being a single parent with a disabled DC, because as I claim UC myself, any money I save over £6k will reduce my benefits. My parents are divorced and neither are badly off, they have never helped me or my DC financially (they are very much of the attitude that their adult children need to stand on their own two feet) but at some point, morbid though it is, I will inherit enough money to be able to help my DC out. Hopefully not for a long while yet as I’d rather have my parents around but it makes me feel less anxious for their futures, as neither of them are going to find life easy.

@OvertakenByLego I need to find out what’s going on with DD1’s EHCP as the college she was at were going to look into options that could help her with looking for work etc at the last review, but I haven’t heard from them for a while.

DD2 doesn’t have one 🤦‍♀️. I applied for one earlier this year when she’d been out of school for many months, but they refused to assess as they said her problems could have been related to that school, so they wanted to see how she got on in another school first. Finally managed to find another mainstream school that would take her which she’s just started but there are huge problems already, funnily enough. I spoke to the SENCO recently about applying again for an EHCP but she said in her experience it was completely pointless at this stage, as the panel would say it could just be teething problems (ffs), and that it’s better to leave at least a term so that they can gather more evidence. She’s already been put on a part time timetable and been removed from her lessons and put in a different unit for kids who are struggling in various ways. So hopefully I will get one for her at some point but the council are being super stingy with them ay the moment, I know the number of EHCPs in this county has gone from 2000 in 2019 to over 5000 now, so they are doing everything they can to not issue any more.

And no they haven’t had social care assessments. I did ask for a carer’s assessment a few weeks ago, is that different? I didn’t even know they existed until recently.

Ahh my parents are exactly the same in their mindset too and one has even said they'll leave it all to charity as we don't need it! My DB will not be happy.

Would DD's father not leave her anything to put in trust if needed at a later stage of her life? (I seem to think you said he's ill or have I misread that bit?) Does she have contact with him?

@Meadowflower2023 yes he has cancer. He doesn’t own a lot but I expect what he does have will go to her. It won’t be life changing but it will help.

DD1 - If DD was moving placement/no longer attending the college the EHCP should have been finalised at least 5 months before the transfer. Email the Director of Children’s Services reminding them of their duty to finalise by then (if they say DD isn’t moving placement then point out they are still in breach of their duties the complete the AR within the set timescales) and also provide anything detailed, specified and quantified in F under s42 CAFA 2014. Have a look at EOTAS. It sounds like that is what DD needs. An EOTAS package is completely bespoke. It could include tuition, therapies, mentoring, PfA provision, a budget for things like art resources, driving lessons and so much more.

DD2 - It isn’t completely pointless. Sadly many LAs and schools do put parents off applying, but the parents go on to successfully apply themselves even if they have to appeal. You do not need to wait for more evidence. Request another EHCNA and appeal if refused. The vast majority of appeals are upheld. EHCPs can continue until 25, or in some cases 26.
Alongside this, if DD can’t attend school full-time the LA has a statutory duty to ensure DD receives a suitable full-time education under s19 of the Education Act 1996. What form this takes depends on DD’s needs. It could be home tuition, online, tuition in the community, small group tuition at a specialist centre, hospital school… Email the Director of Children’s Services about this too. If they refuse post on the SN or SEN boards and you will be advised what to do next.

A carer’s assessment is different to an assessment for DDs themselves by social care. For DD2 you want an assessment by the disabled children’s team, on their website Contact has a model letter you can use. For DD1, there is a model letter here.

Thank you so much @OvertakenByLego, that’s very helpful.

I empathise with your situation and know what its like to lose an income. However I'm going to go against the grain here and say yes I think yabu, I dont think it's right that your daughter is propping up your income and you are benefitting from her having a health condition.

@Concannon88 do you have any children with disabilities?

I wasn’t actually having a go at you - you brought up issues that have been previously mentioned in the thread and I was just clarifying a few things. And people absolutely are questioning the award itself. The OP didn’t post for advice as to whether her daughter was eligible for PIP and yet in response one poster actually stated they didn’t see how she would be eligible and even suggested that the OP better get her ducks in a row with cast iron evidence for the review.

These types of threads always descend into a bun fight because people who have no experience of disability, or, as the OP’s most recent post demonstrates, the problems associated with it on a daily basis, and haven’t the faintest clue how the benefits system works think they know better than the healthcare professionals and benefits assessors actually involved. Even worse are the ones who think they can tell someone is a benefit cheat just by looking at them , and think eligibility for disability benefits is a walk in the park.

Yes although I dont think thats relevant

@Concannon88 ok well if you know of anywhere that would provide a full time carer, housing, bills, food and all other living costs for less than £150 PW please let me know and then she can save a bit of money.

Now you are not working as much why don't you home school DD2
doesn't seem much point in fighting the system for ehcp given the time it will take. She can do a few hours school work and help you around the house as well

Would make life less stressful for you

That’s a disgusting accusation to make, and if you have a disabled child, it’s even worse - and entirely relevant as you should know better. I posted about this upthread. PIP is a cost related benefit designed to cover the extra cost of living with a disability. The OP’s daughter lives with her, so the majority of that extra cost will fall to the OP, as her carer - the DWP clearly have no problem with that as they have made the OP her appointee.

The OP is using PIP exactly as intended - to cover the extra cost incurred and to make sure her daughters’ needs are met. And the OP, and people like her - yourself included if you are in similar circumstances - are saving the tax payer a small fortune by acting as carers. For comparison social services in our area charge £40 an hour for at home care, so the weekly £101 care component of PIP would buy about two and a half hours care.

@CHRIS003 from lockdowns I learned that I NEVER want to homeschool DD2. I fully sympathise with her teachers as it’s nigh on impossible to teach her, it basically ends in me falling out with her and/or doing it all for her. She really needs to be doing something more practical as although she’s bright, she cannot sit still or concentrate for love nor money. She was just out of school for nearly a year and I didn’t have any luck getting her to do anything at home. It wouldn’t be the best thing for her, mind you nor is mainstream school.

Personally, I wouldn’t deregister and EHE. An EHCP can provide significantly more support including therapies and PfA provision than the majority of parents can afford to fund EHEing. Yes, you may have to appeal, but an EHCP can continue for several years yet.

@Concannon88 OP’s DD isn’t propping up OP’s income and benefits from her having a health condition. DD’s PIP and UC is being used to fund DD’s living costs and the costs associated with DD’s disability.

Could the OP not also remind the LA of their duty under the Equality Act 2010 to make reasonable adjustment so that DD2 isn’t educationally disadvantaged as a result of her condition ? I don’t really have any experience of these issues, but from the threads I’ve seen on MN on the subject, it seems to me that schools and LA’s are regularly allowed to sidestep their responsibilities under the Act.

Exactly so. People don’t seem to have much, if any, idea of how much her DD’s disability would cost the taxpayer were the OP not her carer. While her DD is living with her, the OP is providing everything as well as dealing with the extra costs and difficulties presented by the disability and is using PIP and UC in exactly the way they were meant to be used.

@Rosscameasdoody She could, but it would be easier to pursue provision under s.19 of the Education Act 1996, and enforce that via judicial review if necessary.

That's an opinion and I disagree. Obviously costs are involved with a child staying at home once they reach adulthood. However I believe parents should have their own bill's sorted and not have to recoup costs from lost benefits once children are removed from certain claims. She didnt ask to be born or to have these issues. If she does eventually move out, how will the op cope for money then?

Presumably if her daughter dud move out, her bills will drop?

@Concannon88 the costs associated with DD1 and her disability are DD1’s are exactly what DD1’s PIP and UC are for.

If DD1 moves out OP won’t have the costs associated with DD1 and DD1’s disabilities. Using Scope’s figure of £975 per month (or £1122pm if adjusted for inflation) that they say is on average needed to have the same standard of living as households without a disabled person that will be a significant reduction in the costs.

Yes I can google too. Theres absolutely no way of knowing what costs are incurred for the op, other than them coming out and saying. Yes obviously benefits are for your living costs, but I dont agree that parents should be profiting from their children's benefits. As I said in my previous comment - what will the op do if she does move out? I dont believe her expenses will go down as much as shes wanting to take from her money. Shes asked if anyone thinks its unreasonable and I do. End of.