Help with money severely disabled adult staying at home

dr78

There is a point he will have to move into like a caring facility, but not for awhile yet he isn’t ready to leave. she gets carers allowance for him, but she got disabilities for herself and obviously because she gets carers allowance  it comes straight off her universal credit anyway. I am not sure if she’s at a carers assessment or not. I do know that he’s got social worker and other professionals involved.

powerspowers

There’s been some good advice in this thread. I signpost to this resource, it’s Derbyshire based but the tips are fairly generic about how to keep track of spending the money of someone you care for and what evidence to keep. https://www.derbyshiresab.org.uk/site-elements/documents/pdf/managing-money-top-10-tips.pdf

The carers trust may have a cater money matters project in your area which could help, or your local council should list support services for carers as well as offering a carers assessment. All the best to your friend x

Travers23

Delurking as my situation is very similar to the OP's friend and I might be able to provide some reassurance. My younger son is also 19 and has severe learning disabilities and is autistic. He finished education when he was 18 and lives at home. He needs constant care and supervision - like your friend's son he cannot go out anywhere on his own, or be left alone anywhere. Because he has almost no understanding of money (he knows what coins are but not what their value is or how to calculate them), let alone anything more complicated and because he needed a bank account to access his Child Trust Fund, his dad and I applied for property and financial affairs deputyships with the Court of Protection. This meant, once it had been granted, that we have control over his money and bank account. I am also his appointee for the DWP.

Once everything had been set up, we had a visit from someone who went over what we could and could not use our son's money for. They were very clear that, yes, we could use some of his PIP to pay towards household expenses. In fact, we could use his PIP to pay towards:

25% of utility bills.

25% of mortgage and council tax.

His clothes and toiletries.

25% towards groceries (we actually set the amount we deduct at a much lower amount)

Money towards replacing/repairing things he has broken. NB - We try to be fair with this, eg when he threw something at our tv, breaking it, we took the cost of a basic tv out of his funds and paid extra for a fancier tv out of our own pockets.

Money for drinks and snacks at a local cafe for him.

Money for his share of trips out (although we usually end up finding these ourselves).

Reasonable expenses. Eg if I have to catch a bus with him outside of the times he is entitled to use his bus pass, I can pay for my ticket using his funds because he cannot travel on the bus by himself.

Numerous books, crayons, playdough, toys etc.

NB - this list is not exhaustive.. 

We set up an account in his name, in which all his money is put, and because we have deputyships, we have complete control over it. I keep a ledger detailing all the things his money has been used for and send a report to the Office of the Public Guardian once a year. He is still left with money at the end of the month, but contributes enough to ensure that we can, for example, cover the electricity bill or tkae him out to a favourite place.

Finally a quick note regarding education and finishing at 18. This does not mean he was taking any qualifications like BTECS or A Levels. It means he was in a very specialised setting for people with severe needs and was being taught how to trecognise coins, how to recognise one syllable words, how to cope with being around other people and how to regulate his emotions.

Albermarle

In a similar situation to the previous poster, although the disabled person is a bit older.
Just to say we have never applied for deputyship, and have no problems managing with just having one of us as the DWP appointee.
We have never been questioned by social services, ( or anyone else) how the benefits are spent, and do not have to report to anyone how they are spent.
So maybe best not to overthink/overcomplicate these situations too much.

Savvy_Sue

The Appointee / Deputyship question does need careful thought: a friend has managed so far just being an appointee, but there have been a few things lately which are leading to consideration of Deputyship. 

However, in that case the young adult is in a supported residential placement, and I'm just going to say that it took a while to arrange, and my friend started thinking about it early in order to get there before the need was critical. My friend was very keen to ensure that if something happened to them, that wouldn't leave an emergency in which their other adult child felt completely responsible for their sibling.

So as soon as the absolute overwhelm passes for the OP's friend, that might be something to start thinking about, contacting the Social Worker initially. 

Albermarle

Savvy_Sue said:

The Appointee / Deputyship question does need careful thought: a friend has managed so far just being an appointee, but there have been a few things lately which are leading to consideration of Deputyship. 

However, in that case the young adult is in a supported residential placement, and I'm just going to say that it took a while to arrange, and my friend started thinking about it early in order to get there before the need was critical. My friend was very keen to ensure that if something happened to them, that wouldn't leave an emergency in which their other adult child felt completely responsible for their sibling.

So as soon as the absolute overwhelm passes for the OP's friend, that might be something to start thinking about, contacting the Social Worker initially. 

Yes every situation is different.
Worth noting though that it is very difficult to get a Health & Welfare deputyship ( as opposed to a financial one), in these situations. The Court of Protection prefers that welfare and health issues are sorted out between social services, parents/guardians, Doctors etc on a Best Interest basis. If there is an irresolvable dispute, the Court can rule on that specific situation.

elsien

Deputyship does have an ongoing financial cost. Professionals would only usually look at it for finances where there are enough assets to make it worthwhile. House to sell, inheritance etc. it’s not worth it for people who only have benefits and where an appointee can manage the bills. 

Savvy_Sue

elsien said:

Deputyship does have an ongoing financial cost. Professionals would only usually look at it for finances where there are enough assets to make it worthwhile. House to sell, inheritance etc. it’s not worth it for people who only have benefits and where an appointee can manage the bills. 

I think there are possibly a few other situations where Deputyship is helpful, for example my friend doesn't have the right to sign a tenancy agreement on behalf of their adult child, and consequently the company which organises their care has to sign the contracts on the house they rent for this particular group of young people. Which isn't a problem, except that some landlords won't do 'company' lets, which reduces the number of properties available. I don't know all the ins and outs, I just know they're reluctantly coming to the conclusion that they may have to go down that path. 

elsien

There are still ways. The landlord can choose to accept an unsigned tenancy, or an application can be made to the CoP. Which isn’t quick but for supported living housing associations or specialist landlords tend to agree to let the person move in while they wait, if they know it is in hand. Housing with care for older people are more awkward in the main. 

Many people who lack capacity to sign a tenancy (which is different to financial capacity) should also have a community DoLs in place, and the tenancy gets bundled on with that application by the local authority. 

It’s more of an issue with private landlords.