What did you make sure was in place for your severely disabled child at 18?

[Lesley25]

I wondered what others did, legally, financially and choices they made (or wish they had) for their children when their severely disabled child turned 18.
I know the admin is huge, these were my thoughts.

Make sure DOLLs is in place

Deputyship for health welfare and then finance (do each one seperately)

apply for UC for them

open a bank account in their name-
i am not sure of this one because as their parent I will always be in charge of benefits money etc. , it would benefit in the event of my death obviously but I can just see this being a minefield if there’s an issue with it and the bank - I can’t simply take my child to the bank without carers etc!

EHCP sections are robust and detailed so they can be enforced

supported living - Do parents have any advice? better to do it with the support of everyone before they get older ?

anyone else have any suggestions I may have missed or advice?

A few more to think about:

SMI exemption from council tax.

Carer disregard for you for council if DS is living in the same house. That may result in a 25% single person discount if DH is the only one left in the household who is eligible for council tax.

CHC funding if that is relevant.

Considering your will/a trust - although you don’t have to wait until 18.

UC doesn’t always have to be just for 18+ either.

You would only need property and financial affairs deputyship if DS has capital/property other than benefits. Being appointee will suffice if it only benefits.

You could look at an appointee bank account.

I think moving on to the next step is helpful before it becomes essential because you are no longer able to care for DS/not here. That way DS has time to settle and you can iron out difficulties before it becomes essential/you can’t help. Although that doesn’t necessarily mean 18 is the right time. If you think DS would be better in his own home with support for him there rather than in a residential placement, you could look at mysafehome - it is not for everyone though and isn’t the only option even DS would better living in his own home.

Thank you @perpetualplatespinning
because DS has had adaptions made to the home via a DFG , the council reduced the council tax to the band below. I didn’t know they could do this so it may help someone else by mentioning it.

I saw appointee bank account on another thread so I’ll have a look at that also.

Ds will be going into supported living , but a home that I create, that is a whole other thread I have yet to create!

The disability band reduction for council tax is separate from the SMI exemption and carer disregard. You can have all 3 at once which may result in a 25% single person discount if DH is the only other eligible person on top of the band reduction.

I found Lloyds was the easiest bank to open an appointee account with, this was back in the day when there were actual branches but my daughter didn’t need to be present.

I’m struggling with the UC.
ds has finished high school now so before the life skills course starts (which is really just more of the same), I’ve jumped through hoops with ID and verification (not so easy when ads only has a a passport ) , they’ve now said they need a letter ? I explained surely they can do their own due diligence And if it’s refused, I’ll appeal.

did anyone else get a letter from their child’s sixth form to state this- I don’t even think I’d be able to get one!

What do they want the letter to say? To confirm the end date of the current course? To confirm the start (and maybe end) date of the next course &/or confirm the type of course the next course is and number of hours to check if DS will be in full-time education? Both of these aren’t rare. The sixth form should be able to provide it.

And yes it is the claimant/their appointee’s responsibility to provide the information.

Ok, i just assumed they would do their own checks, I’m not sure ds’s school will provide it because whilst its technically 16-18 sixth form,
its just a continuation of what they’ve been doing for 5 years. But I will ask.Thanks @perpetualplatespinning
if they don’t provide it, I will wait till ds hits 18 years old to apply again, It’s just I finally got him Into the LCWRA group and I bet I have to reapply at 18 for that again.

It is the claimant/appointee’s responsibility to provide the information. UC may check if there is anything suspicious/they want to clarify/randomly but only once information has been provided.

Just like when they request a tenancy, it is the claimant/appointee’s responsibility but they sometimes check with the landlord.

The school should still write a letter. If they won’t, complain.

I would pursue the UC claim now, but even if you don’t claim UC now, the credits only new style ESA support group status (which is LCWRA for UC) will still be there in the background unless DS is reassessed.

Thanks @perpetualplatespinning I didn’t realise I could complain if the school wouldn’t write a letter, I’ll try that next if they do.

Just an update to say UC was granted for my son, apart from additional paperwork which in hindsight I should’ve realised would be requested, it was relatively straightforward.

I forgot to add it’s important to notify child benefit that your child receives UC so child benefit is stopped, which is pretty much instant but having your child in UC in their own right and establishing this for them is far better then receiving child benefit if you don’t claim other benefits.
carers allowance can still continue if you previously claimed it and your employment hasn’t changed.

Brilliant news. One less thing that needs attention.