I don't really know what to do

I’m new here so I’m not sure if I’m posting this in the right bit of the forum but here goes.

I’ve been caring for my younger brother since he turned 18 (6 years ago) he has autism and requires almost constant supervision. Around 4 years ago I started caring for my older brother who had mobility issues due to an accident some years ago and also had mental health issues. Everything was running quite smoothly, I’d work nightshift, nap from 6am to 10am then get up with them and start the daily routine. Then in early August 2018 I was laid off, it’s been incredibly hard to find constant nightshift work, so I had to sign up for Universal credit, as I could only get 1-2 shifts a week via agencies. This is when things started to go downhill. When I was working I’d pay my half of rent, the entire council tax and all energy bills, as I wasn’t able to do this anymore myself and my older brother started splitting every bill right down the middle. It wasn’t ideal but we made it work. Then on March 9th 2019 my older brother suffered a heart attack that was brought on by a blood clot and passed away in hospital.
I am devastated! What the eff do I do now?
I tried getting help from local council and dwp. Dwp say they can’t help until the council change the tenancy agreement, the council took 7 weeks to change it. My “Emergency Credit Card” has and still is taking one hell of a beating. Now we’re hit with bedroom tax, which really annoys me as I’m not permitted to rent out our spare room. Even is I was permitted to rent it out, I’m not sure if I could, all his belongings are still in there…heck his ashes are still in there as I’ve yet to be able afford an memorial plot for him.
Now I’ve been awarded the princely sum of £433 UC per month, rent is £288 of that, £112 for council tax…£33 towards other living expenses. What do I do? :unsure:

In anticipation of a few questions.

Yes, I get carers allowance, but that covers energy and food for my brother. (I’m currently living off toast/sandwiches).
Yes, I have the carers element in UC, without it I’d be getting £273 per month, which wouldn’t even cover rent.

Hi Mark … condolences on the lost of your brother.

Present situation … looking at it , very little.

SHELTER recommended on the housing front even if the dreaded " Bedroom " tax is unsolvable unless you downsize.

I presume already on the local list to do so ?

In some areas , there are literally thousands waiting to downsize … a real post code lottery.

One thing that might help … willing to move to another area ?

On the UC front , an online benefits calculator to ensure that ALL benefits are currently being claimed :


Council Tax … single person discount now kicked in …if you applied ?

Housing Benefit … many reports of " Chasms " between award and actual rent payable … £ 900 per month reported
only last week … caused by Housing Allowance … the basis for Housing Benefit … continuing to be frozen by the

Not much but … I cannot see much else of use to you out there.

Hi Mark
It’s worth checking that your younger brother is getting everything he is entitled to. You shouldn’t be using your careers allowance to cover his food and energy, or indeed anything else.



Firstly, sorry for your loss. My husband died suddenly and I was in shock for a long time.

I suspect your brother should be receiving highest rate Disability Living Allowance or Personal Independence Payment, plus income related benefit, ESA or Income Support.

Although he is now 18, and under normal circumstances would have to pay Council Tax, as he has autism, which is a “severe mental impairment” he should be EXEMPT.

When did your brother last have a Needs Assessment from Social Services, and you, a Carers Assessment. As there has been a “change in circumstances” insist this is done urgently.

As you and your brother are both on benefits, then you should apply for Housing Benefit asap.
As your brother has autism, there MIGHT be special arrangements for him having an extra room for a sleep in carer, other than you.

Can you clarify who is the tenant now, you, or your brother? Again there might be special rules which could help here.

Moving would be a big impact on my brother. Our local shops are less than a minute walk from here, and there is 0 roads to cross to get there, he loves this tiny bit of independence, the local shopkeeper knows and helps him. Also from Friday -Sunday our nephew, who also has autism comes to stay. It’s the only thing the pair of them look forward to all week.

I always assumed this money was to help me care for him…also I use the energy too.

He’s actually 24 now, I’ve had him since he was 18, I took him when social services were suggesting my mum put him into residential care when she asked for help…eff that! I’ve applied for a council tax reduction twice now it’s never went anywhere.
He’s only ever had one assessment, back in 2016 when they switched him from DLA to ESA & PIP & I’ve never had a carers assessment.
I am the sole name on the tenancy agreement now.
My UC is pretty much all housing benefits + carers element as the deduction of the carers allowance wipes out most of the standard allowance.

Okay Mark … a few links to further information for you :

Needs Assessment :

Getting a social care needs assessment - NHS

Carers Assessment :
Carer's assessment | Carers UK

Social Housing … downsizing / Housing Benefit :
Check if a room counts as an extra bedroom for Housing Benefit - Citizens Advice

SHELTER on the Bedroom tax :

How to deal with the bedroom tax - Shelter England

Housing Benefit calculator … by post code :

Housing Benefit: Eligibility - GOV.UK

Council Tax … disregards :

People who are disregarded for Council Tax - Entitledto

Housing ?

Noted ?

To remain and struggle through lack of finances ?

Difficult choice … only you can decide on that one.

I suggest you go to the CAB, as they can often work out all that you can claim. There also can sometimes get you some help with outstanding bills for instance electricity.