UC/LCWRA & PIP - Supporting daughter with severe needs

[Selina42]

How do you support your young adult with their benefits. Daughter 19 severe learning needs. Will be getting UC/PIP we add it to our family pot - She has a debit card which we support her with if she says she wants anything such as another reborn doll or search in the charity shop (she hoards a bit) - we add £20/30 to the debit card each week. Other things like food, clothes, holidays, craft items, going out, cinema we just pay out the main pot. Is it ok to do this way? We have tried giving her choice but she cannot and giving her choice upsets her mental health she panics. I look after her 24/7 (currently copes with an enabler 2 hours a week) so cannot work - partner works and we just about get by with mortgage and bills but nothing more. To remove this money that was child tax credits before would mean she would have to go in residential so i could work (which will destroy her) or we would have to move up north a bit - we are seriously considering this and buying a house for about £90k which would mean little mortgage. However change is not something she copes with well and her mental health team are all here (plus her brother - also disabled has a club 2 days a week here he enjoys). Look forward to hearing from everyone

[HolisticMum]

I have 2 disabled sons. We do very much like you, all goes in one pot and they get whatever they need like clothing, food, computer. We just sort of carried it on from when they were young. But I don't think the Authorities like it like that. But we have to do what works best for us whilst we're in charge and what works for us all.This year I was really upset when they wanted to charge my youngest son 'care costs'. I appealed against it, then they wanted a run down of all that is spent, even though they're not paying for that. It made me very stressed and I did part of giving them costings and then I said I shouldn't have to do it and made a complaint. I'm worried still about it. We provide the care and employ carers so why should they get money back and take it out of our boys self directed support that I take up my time managing for free.

[BenjiB in reply to HolisticMum]

That’s pretty standard, everyone has to pay towards their care outside of the house. Most young adults I know are left with around £30 per week. It’s unfair but how it is.

[HolisticMum in reply to BenjiB]

Unless we fight for their rights though, nobody else will. I won't sit back and accept what the LA throws at us, that's how they get away with it all.

[SpeedyH]

Hi there. It sounds like you have worked out a good way to manage your daughter’s money which covers her living costs and also gives her the freedom to safely make her own purchases. I think all the official agencies should be ok with that. I would recommend, if you haven’t already, that you have an account that only your daughter’s money gets paid into. Move money from here onto your daughters debit card and also set up a direct debit to your account for the bulk of the money for her living expenses. Put a reference on the direct debit of ‘living expenses’ as that will then show on statements. The reason for this is that at various times people will ask to see bank statements and doing it this way keeps your own personal finances private. You will need to keep less than £6000 in her account otherwise she will lose her UC.

As I’m sure you have discovered, adult social care is not free and your daughter will have to contribute towards her care. Get into the habit of keeping receipts for any purchases you make that can be directly related to her disability, things like seamless clothing, sensory toys, special toothbrushes, etc etc as these may be offset against her care charges if your council assesses in that way. x

[BenjiB]

Most people I know put it in the pot. As long as your daughter is fed, clothed and has other stuff she wants/needs it’s fine to do this. My friend added up their outgoings (it’s just her and her son) and divided it by 2.

My son goes to a residential college term time so I transfer his UC into a separate “pot” that is within my bank account. His PIP is only paid whilst he’s home so that goes towards food and bills whilst he’s here ,