Adult autistic son’s benefits. Who will support him with these when we die?

Juliedcymru

Our 31 year old son lives in supported accomodation nearby. He does not have capacity to manage his own financial affairs but is very able to spend! We were advised by Health Board/Social Services and DWP to be his appointee/agent for various matters including operating his benefits. If he had control of the monies it would all be spent in a day or two, so we move money for his everyday spending into his everyday bank account as he needs it, on a week sometimes daily basis. (Attempts to teach him about budgeting are ongoing. But have so far failed!) plus we monitor  his direct debits for rent, bills etc. and organise payments for any bigger purchases he may need - new bed etc.
Hoping family members would take on this role should we expire but what  if they dont want to? 
Does anyone have experience of this? He would need very regular contact with whoever took on this role. Is there a service (rather like a Trust ) who would do this?

Savvy_Sue

I think I'd do 2 things:
1) speak to the manager at the supported accommodation and ask what options there might be

2) Start talking to family members who might agree to be his appointee, and see what reaction you get

You do have LPAs in place for your own affairs? I'm not sure if this would cover your appointee role, so I'd check that.

Very sensible to ask the questions before you need the answers!

itsthelittlethings

Does he have a social worker or similar? Ask them. From memory there are organisations who do this kind of thing but I can’t recall any details.

Keep_pedalling

Do you have any other adult children? If you do maybe now is the time to have a discussion with them about this. 

You should also consult a STEP solicitor about making appropriate wills.

https://advisingfamilies.org/uk/information-portal/caring-for-others/how-can-i-make-sure-my-disabled-child-is-provided-for-when-i-die/

Albermarle

Do not forget that for anybody over 18, with these kind of disabilities, social services is ultimately responsible for them, as far as I understand anyway.
Often in practice, parents, family, care workers etc look after them and deal with the large majority of issues, but if this is not possible anymore, then it is  for social services to deal with. They may well delegate to a large extent, but they are the ones who will have to decide in the end.

elsien

There will be a paid organisation locally commissioned by the local authority which offers an appointee service if the local authority don’t do that themselves. They will also take over paying bills for people. Penderels, Age Uk, there will be others.
For people  in supported living, it tends to work in the same way that you are managing things now except it won’t be as much direct contact because services are overloaded. The appointee will take over the bills and pay them directly. They will sit down with the person and their care staff and work out a weekly budget for food,  entertainment spends,  that sort of thing. If there are issues, they would expect support staff to get in touch to let them know. Any surplus would with the corporate appointees account as savings for when the person needs a bigger amount of money, for example, for new furniture or  a holiday.
People  can still have their own bank accounts if they can manage them and the appointee would  transfer money over weekly. Because the person has been assessed capacity to lack capacity around finances,the  appointee is ultimately responsible for making sure everything gets paid.

If your son’s level of assets require a deputy ship ( for example, he inherits a large sum) then there are solicitors who are accredited by the court of protection to act as professional deputies. The local authority would have an obligation to support with that process if there was no one else. 
Some care providers used to offer a corporate appointee service, but there is too much of a potential for a conflict of interest, so generally speaking they will help with day-to-day spending, but not the benefits/bill paying side of things as a rule.

Albermarle

If your son’s level of assets require a deputy ship ( for example, he inherits a large sum) then there are solicitors who are accredited by the court of protection to act as professional deputies

Although if the inheritance is planned in advance. A will ( the parent(s) for example) could set up a disabled persons trust, which I think would be better. Plus it means the disabled person would still get benefits, which some may not be available if they inherited money directly.

HobgoblinBT

Get the local authority to appoint their recommended financial advocacy service.  You can then just concentrate on visiting him as your son and not worrying about his finances.

My 58 year old brother in law with learning difficulties and autism also lives in supported accommodation run by our local county council.  The Council gave us the choice of getting a Court of Protection order so that we could manage everything ourselves or using a financial advocacy service as recommended by the county council.  A Court of protection order can be expensive and requires extensive records to be kept and annual accounts to be submitted to the court.  We opted for the financial advocacy service for about £16 per week.  The first thing they did was a benefits check and successfully applied for a PIP backdated to when he entered the supported living accommodation with a back dated payment of over £7,000. They send money to his own bank account regularly as needed for “ordinary” spending such as bills and pocket money and extra funding from his monies for “extraordinary” spending such as holidays, birthdays and Christmas as requested by the care staff, via sign off by the local county council care manager.  

If planning to leave money to him in a will, do so via a trust with a sibling as a trustee or if not possible/not appropriate appoint a professional.  Our trust has discretion as to investments and payment of income to the beneficiary and in the event of the beneficiary’s death will become part of his estate.  Look for  a solicitor who use the STEP guidelines, meaning an industry accepted set of terms and conditions for a trust.

Cant fault the service that we have experienced from the advocacy service, and the local council care staff who have to comply with financial safeguarding rules as part of their job.

Hope that helps.