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?

[EmptyLogBasket]

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.

I think another Emma was accounting for the carers allowance coming off in her calculation ?

OP gets Carer's Allowance which is deducted from UC.

Max UC (not including housing):
£368.74 + £185.86 = £554.60

CA: £76.75/week = £332.58/month

Actual UC (not including housing):
£554.60 - £332.58 = £222.02

HTH

There is so little government advice on claiming benefits for this situation. It's as though they want you to disappear although the caring role you do saves the country many thousands. It makes my blood boil!

Do you have a social worker? You can ask for benefit guidance and help. Also citizen advice bureau might help but my first call would be to his social worker who should already have given you guidance.

Normally the young disabled adult claims in their own right. You can advocate and represent them.

Long list sorry....sorry if you have done the following already it just my what to do next list I give to people.

Firstly get a form from your GP to confirm his consent for you to be his representative, this is if he can consent.

Do the same for hospital and mental health services if applicable.

Then ask your GP for a fit note in your son's name stating his limited capacity to work.

Apply on his behalf for universal credit. Submit the fit note saying he cannot work. This will in time trigger a LCWRA assessment. Keep requesting additional fit notes from GP when they run out and submitting them.

Once he's assessed for limited capability for work this will trigger extra benefits so he won't be required to look for work.

You can apply for PIP. I have a lot of extra information on this. Too much for this post, but he will qualify if he needing the amount of care you are giving.

Also approach the GP surgery practice manager and ask if they have support for carers. They often employ a specific person to support carers and they can help a lot with getting the right support signposted.

To summarise, he'll get universal credit in his own right, he'll get LCW component, he will qualify for PIP. He might qualify for a car funded by PIP mobility component that you drive as his carer.

In addition if you are his carer and it's just the two of you at home, you can apply to the council for single occupancy rates for council tax. You'll get a 25% discount.

All this we found out by chance and talking to other mums in the same situation. There doesn't appear to be any joined up benefits advice that covers everything.

Need to add that you can be his representative and do everything over the phone.

Get your GP to write to this effect so you have evidence should you need it.

Also as has been mentioned you'll get carers element in your claim for UC.

"There doesn't appear to be any joined up benefits advice that covers everything."

Citizens Advice - if the adviser is doing their job properly - does exactly this.

Sorry @AnotherEmma I just saw the figure quotes started with a 2 and assumed you had confused with the under 25 rate.

@inloveandmarried Your local Carers Centre and CAB will be able to give you joined up advice on benefits. A carers centre will also help with other supports specific to carers such as access to respite and grants for carers as well as advice on future planning and other issues commonly faced by carers.

To update -

So far I have managed to open a UC account and submit an online claim for me. I couldn't verify my identity online - I don't have a valid passport or photo driving licence, for example, and only seemed to have one of the things on their list (Tax Credits), not two - and so am expecting a call from them next week. Can anyone give advice or explain the verification process please?

I also need to provide a letter from the landlord confirming the tenancy and rent by this time next month.

I didn't find it the easiest thing to do but help and links from pps on this thread, and an online chat with CAB Help To Claim, (I couldn't get through on the phone,) got me to where I could click on submit at least.

One question I had was whether or not to put my other DC - who is at uni living in halls most of the time - down on the 'who lives with you' bit. I did in the end but any advice about the pros and cons or whether I need to change this would be appreciated too.

I also wondered whether I need to add a note to the journal about how inaccessible appointments in person would be because of my 24/7 caring responsibilities and my severely disabled DC's specific needs?

I am now trying to get on with the claim for my DC and will be back to update and no doubt ask for more help...

I would certainly put down regarding your son's complex needs and why you can't get to the job centre easily. I put a note to this effect for someone I was helping with a claim- said that she could not get to the job centre due to severe mental health and they were very supportive and managed to do all her verification over the phone. Sorry I'm not sure about your student child but if they live away most of the year i would think not to put them down. If they are under 21, you would not be deducted a non dependent deduction on your rent element for them anyway.

Well done OP, that's good progress so far

i advise that your next step would be to call the UC helpline on 0800 328 5644 to explain that you need a phone appointment (not F2F) because of your caring responsibilities.

See https://www.citizensadvice.org.uk/benefits/universal-credit/claiming/going-to-your-interview/#h-if-you-ll-find-it-difficult-to-go-to-your-interview-because-you-re-ill-or-disabled

You will need to provide ID, tenancy agreement etc - hopefully you can upload scans or photos of the documents to your UC account? but if not you should ask how to send the documents when you call the UC helpline. They might want you to physically take the documents to the job centre but if that's not possible you should ask if there's an address you can post them to. (Then send photocopies only and send recorded delivery!)

"One question I had was whether or not to put my other DC - who is at uni living in halls most of the time - down on the 'who lives with you' bit. I did in the end but any advice about the pros and cons or whether I need to change this would be appreciated too."

I think you were right to include your other child who is away at university most of the time. If they come home in the holidays, and still treat your home as theirs, they will be included when calculating how many bedrooms you need. You said you're getting HB at the moment, and I don't know if you told them your DC went to uni? but you should still be getting the 3 bedroom rate of HB. When your UC claim is completed you should also get the 3 bedroom rate of the housing element, but you will only get it if you give information about your other DC who lives with you when not away at university.

Hope that makes sense!

@EmptyLogBasket you're making great progress. The advance payment can be paid back over two years.

Why don't you join us on our SN thread - several of us have children around your DS's age. We understand what it's like. I'll PM you the link - it doesn't appear in active conversations.

Hello again everyone. I wanted to come back with an update and to thank pps for all your help and support.

It has taken a full 4 months but we are finally pretty much sorted - at least for now. I am receiving UC with the housing and carer elements, (but then all my pre-existing Carers Allowance is deducted from that unfortunately). I am also receiving UC on behalf of my severely disabled DC and now finally with the LCWRA element, together with the pre-existing PIP. It is very tight on my side, but using some of DC's income to fairly contribute towards the essential household bills will help.

It has been a mostly difficult, frustrating, baffling, slow, repetitive and stressful process to get to this point. It really shouldn't be made to be this hard for people in our situation or similar who simply have no choice. Three things made it a bit easier: firstly the person who came to meet us near to home to verify identity was a very decent human being; secondly my DC's LCWRA assessment was - eventually, but that's a long story! - done as an existing paper and information exercise rather than in dreaded person, phone or yet more dreaded form-filling; and lastly the help and support received from pps.

Thank you all very much indeed. Hopefully next winter we'll be able to have some logs!

Thanks for updating us, OP - good to know you are sorted at last.

Well done! So glad to hear its finally sorted.