Child Tax Credits and Child Benefit have ended suddenly. Expecting Housing Benefit to end too. Full-time carer of severely disabled young adult. Your best advice please?

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I received a leaflet some weeks ago, explaining that Child Tax Credits and Housing Benefit are being phased out and that I would receive a letter with a date to apply to migrate over to Universal Credit. I have not received that letter so far. Child Tax Credits and Child Benefit have instead suddenly ended, and I assume that this also means Housing Benefit will stop almost immediately too. From what I can gather, this is because my severely disabled young adult DC has just turned 20 and Child Benefit and Child Tax Credits can no longer be paid from this age onwards. They had continued until 20 as DC has long been educated at home because of the severity and nature of the disabilities.

Losing the Child Benefit and Child Tax Credits, (and assuming Housing Benefit too), has left us with no income at all now except my weekly Carer's Allowance and the DC's PIP.

I care 24/7 and it is very demanding physically and emotionally. I get very little sleep and I am permanently tired. I have little to no time and opportunity to sort out this loss of benefits, and yet I will have to if we are to have enough money for food, utilities, rent, council tax, petrol and so on. It is a private landlord and I include petrol as our (old) car is essential as we live rurally and public transport is not accessible with my DC. We live in England.

Is there anyone with the knowledge and experience to give me a step by step guide of what I must do and what to expect please? Please remember if replying that I am very tired and have my hands full. Please also assume little or no benefits knowledge - for example I wasn't even aware that I should also have been receiving Income Support for all this time before now.

Sincere thanks in advance.

Start your own thread rather than derailing this one. OP has already said she's overwhelmed and confused.

If your dd gets ESA and is in the support group they shouldn’t have to do the work capability assessment but make this clear on your journal if you apply for UC online

You dc will be eligible for uc in their own right, this is separate to your claim, there's a carers element you can claim in addition, plus a housing element. You claim online, you will need power of attorney to apply for your dc's if they cannot do it themselves, if they cannot consent to this you will need to apply to the court if protection. CAB and other disability orgs can help you

If you run your circumstances through this website, it can give you a basic estimate of eligibility. It doesn't work for everyone, but it is a starting point: https://www.entitledto.co.uk/ On top, you should look into EC04 energy grants for low income households, and ask the council tax for a band reduction based on a disabled occupant needing a room for their equipment or needs. Once your universal credit is sorted, you will be eligible for council tax relief.

Power of attorney / court of protection not necessary for benefit claims. OP can apply to be a benefits appointee as per the link I shared.

Just to answer another couple of points -

I am my DC's appointee for PIP with DWP - I receive the letters and payments to administer.

There has been no previous ESA/LCWRA/CHC, whatever those things involve. There was a ECHP but that might have lapsed as we have had no contact about it since lockdown.

OK, as you're an appointee already, that's good, it means you can just apply for UC for your child - but do your own claim first.

You can still apply for Universal Credit both for yourself and for your DC even if they didn’t get ESA before
I would make that your first port of call

Court of protection is not needed if you are only applying for benefits- being their appointee is enough x

Once you have sorted UC claims for you both, you need to look at the EHCP. It should not have ceased. You should have had annual reviews each year and it can remain in place until 25, or 26 in some cases. Contact the LA about this.

I am anxious not to go down any googling rabbit holes as getting some income sorted out to replace what we have lost seems to be the priority and quite confusing and overwhelming right now.

I'm trying not to panic as I need to remain calm for my DC, but 5 weeks suddenly without that income and having to navigate all this while tired and caring is chest pain and headache-inducing. It sounds like an advance to help cover those 5 weeks would just reduce future payments even further? As I understand it UC will be a lot less than we have just lost, at least until it is accepted that my DC can't work or do anything like that at all - I've seen worrying reports saying that part could take over 4 months?

Are you not already appointee for his PIP OP? Can you check the letters? IIRC they will be addressed to you if you are.

Agree put two separate UC claims in, one for him, one for you as a carer. It’s not too complicated.

It sounds like my DS has less severe challenges than yours but he gets LCWRA. I had to get a fit note from GP (can normally request online, check GP website) to say he wasn’t fit for work to cover the assessment period but there were no interviews either at home or the job centre. I just had a phone call from the job centre, they were very nice, and it was granted. He’s not expected to work or look for employment. I think if they get higher rate care PIP, there’s not an issue.

You’ll be very lucky to get through to Citizens Advice IME and it may take lots of calls which will be frustrating so I’d try and set aside time to put the claims in first thing tomorrow to avoid any more delay in getting payments.

Post on here if you need help or get stuck while doing them.

It can take a while to be assessed for work capability. You will need to submit sick notes for him to his Uc claim. You may not be much worse off if you haven't been claiming income support as you will have the standard element of Uc for yourself which would be the part which would have been Income support. You will get the standard element of Uc plus carers element and carers allowance deducted from your UC. plus rent element. then your son will get standard element and once assessed LCWRA. It is not the job centre who do an assessment, he wil be referred to the centre for health assessments after 29 days of submitting sick notes and then will be sent a work capability ( UC50 ) form to complete after which a decision will be made.

An advance will reduce future monthly payments, it is usually paid back over 12 months I believe. You should get a two week run on of housing benefit as others have said also. PIP and carers allowance won't stop. Apply for UC for you both asap, very easy to do online as long as you have things ready. don't delay even if you don't have sick note etc for your son yet, they won't ask for it for a few days.

My DD receives LCWRA - Limited Capacity for Work Related Activity - a higher rate of Universal Credit. You just start the application online. I had someone from the local benefits office come to the house to check passport/proof of identity and he was very helpful.

As you seem to be overwhelmed by it I would definitely take advice given upthread and contact a charity like this one:

https://www.turn2us.org.uk/get-support

Sorry forgot to say, you are right OP. DS didn’t get the LCRWA element for about 4 months,. He got the basic element up to then. Why they do that when it’s a condition which is not going to get better I don’t know but I suppose it saves them a few hundred quid!

This is why time is of the essence so don’t delay putting the claims in. It’ll be a stressful few hours but when it’s done, it’s done.

Cancel any direct debits you think you won’t be able to cover while waiting for your payments and inform the companies of the situation to avoid getting into a pickle with money coming out that you need for essentials like food. They will be understanding and can put your account on hold.

Write a list in a notebook of what you’ll owe.

Will take a bit more time but saves you worrying later in the month when you may be short of cash.

Good advice.

LCWRA is never paid for the first 3 months of the claim no matter what the condition unfortunately unless someone is terminally ill.

OP, if it's helpful, these are the amounts of Universal Credit you and DC should get:

You: £222/month plus the housing element towards your rent (this should be the same as the Housing Benefit you've been getting, but it's paid monthly in arrears)

Your DC: £292/month to begin with and then, after doing the work capability assessment, they should be given "Limited Capability for Work and Work-Related Activity" (LCWWRA) which means another £390/month so £682/month in total.

Plus you will continue to get Carer's Allowance, your DC will continue to get PIP, and you will continue to get Council Tax Reduction (so no council tax to pay).

Your local Citizens Advice can advise you about 'social tariffs' for cheaper energy, water etc.

You might find that once the UC claims are sorted for both of you, you will be better off or at least about the same as you were before.

Council Tax Reduction (so no council tax to pay)

This isn’t necessarily true. It depends on where OP lives. In some areas, even the maximum council tax support doesn’t cover 100% and leaves the claimant with a small amount to pay.

Perhaps, but I'm trying to simplify things as much as possible. No point splitting hairs over CTR when the priority is getting the UC claims in.

It is not splitting hairs to inform the OP she might have to pay some council tax when someone has posted she won’t have any to pay. The last thing she needs is to not pay any council tax due.

Since you are already the appointee you can go ahead and make the claim for both of you without having to go through that again.

Make your claim for UC. I’ve just migrated over this month and I was surprised how straightforward it was. They will ask all the questions you need and the fact you get PIP and carers already will be on their system. You can do it online in about 15 minutes.

@AnotherEmma OP is over 25

OP - On UC you will get £ 368.74 plus 185.86 carers element - this is different to carers allowance plus your rent element which should be the same as you had for HB

Hope that helps but please start the UC for yourself and then your child as soon as possible.

I’m not sure if it helps but I found them enormously kind and helpful. My dc struggles out and about but we did go for one “meeting”. To show his passport etc, they told us that he wouldn’t have to attend in person again and that I could come in by myself if I needed any support with benefits. They also said that we could have requested a private room and other accommodations if needed.
I filled out the form on line for universal credit, requested a sick note on line from my GP explaining what it was for and the whole process was very straightforward. You are exhausted and I would marine scared but honestly I think just get it done and it will all fall into place.
There are lots of MNetters with similar lives, hop over to the SN boards.