Parental Wills - regarding disabled child

[Meatyfool]

Hi,

Presently, my wife and I have "pretty straightforward" wills which deal with all the "usual stuff".

However, our circumstances are far from ordinary in that our eldest son is autistic and has severe learning difficulties. Barring some kind of miracle, he will never be able to take care of himself and so he will need at some point to go into care, and almost certainly will have a Deprivation of Liberty Order made against him.

Two aspects spring to mind regarding to provision for him in our wills. Firstly, ensuring that he gets the care he needs and secondly, ensuring that he has a financial future too. As to the latter, he will probably come under the Court of Protection. And regarding the former, we certainly need to have that all planned through before we die.

I'm at a loss as to the best way to get the ball rolling. I have thought of speaking to a "disability advocate" who I could probably get access to through a charity such as the National Autistic Society, but this might be jumping in at the deep end? If we have to pay someone to lead us through the process, then so be it, but as a Fool, I'd rather educate myself as to what needs to be done and when, and pay for those services that I can't do myself!

Currently, my wife and I receive no help from any governmental, commercial or voluntary body but as he approaches his teens, this will almost certainly have to change.

Meatyfool..

[oldtimer]

It is likely that several other parents have been in the same position as you are.
I know that when I attended meetings for people who were attorneys under the old system of Court of Protection there were several people there who were attorneys for disabled adults.
I would think the best place to find out more is to contact your charity as they will have information. You also need to think about possible attorneys so that you can have discussions with them about whether they are prepared to take it on.
you will need specialised help with the drafting of the will, but I think Power of Attorney - both sorts - is necessary.

[chris]

Hi Meatyfool

I would second everything that Fred Bloggs says about getting what you are entitled to. I would also second what he says about buying a roof over his head or at least leaving provision for it in a will.

I'm not sure of your son's exact age and where he is at present but it is at this point in his life that you need to be fighting some battles. If our local authority is anything to go by, they will not provide for your son's needs and will try to get away with as little as possible. If he is in a special needs school, they will be leaning on the school to say they can meet his needs even if they can't. If he is in mainstream school, it will usually break down big style when he reaches secondary school even if he was just about coping in primary. They will work on the basis that they will only do something different if the parents are motivated enough and get legal force behind them. We had a legal battle to get our son into a residential school (LA gave up days before tribunal and if the solicitor had not been present when they came up for the 'signing', they probably wouldn't have signed). We then had a mini legal battle to get him from the school into the college and then another legal battle to get him to stay in college. We are now looking at a legal battle to keep him 'out of county' in a suitable adult placement. However, he is now accessing a local mainstream college (on a foundation course) and has a supported day job in computers which he loves and they are impressed with him. Therefore do fight in the here and now to get him the best possible care.

LAs love supported living because it is cheap for them, even though it is probably the worst option for most autistic young adults as there will be multiple changes in staff and most importantly, changes in the people in his shared house. This is where the purchase of a house comes in useful. My wife supports people having trouble with LAs and the times that a supported living goes wrong when they put in an unsuitable housemate, are too frequent to mention. The LAs say that they vet the suitability of people and care companies, but they really don't. Hence getting a house is some parents' way of dealing with this problem as they have control over the place where they live and who they live with.

If he ends up in residential placement, you will find that someone will come and assess his financial circumstances. They will leave him enough to live on and take the rest to fund the placement. Therefore you need to be really careful about writing a will. He will not necessarily be 'under the court of protection' if his inheritance is written into trust with suitable trustees looking out for his welfare. A trustee who has knowledge of the care system would be ideal. Therefore you need to make sure that any solicitor you use (and you MUST use a solicitor) has good knowledge of the law around this and of setting up discretionary trusts, otherwise you will find that his inheritance is taken by the LA.

If you are using a law firm to fight in the here and now, you also need to ensure that they have knowledge and experience of fighting these cases. There are lamentably few in the UK with this experience and with the specialist reports that will be needed, you will be facing a bill of about £20k if you are looking to fight for a placement that is outside of the normal LAs list. People may tell you that they have won at tribunal and my wife has helped several people do just that but these are usually talking about a choice of provision in the local authority that is on their list of providers. For more specialist care or residential placements (which cost more), it is incredibly difficult to win at tribunal without a specialist solicitor.

Whilst I'm sure you will be doing the best for your son, it is not cut and dried that he will be in such a bad position if you were not around. Make sure that you fight for everything he needs in the here and now. Being a parent of a disabled child is incredibly stressful and sometimes it all gets on top of you. Don't worry, we all feel like that at times and some times it is overwhelming. Make sure that you are getting adequate respite care. Although you may not think it is essential in the short-term, it will not only give you a break but will also get your son used to spending nights away from home.

All the very best to you. Very best wishes for the future.

Chris

[Rune]

Hi Meaty,

Mencap do seminars for parents on just that topic, see if there are any near you. I went to one a couple or so years ago, it was very good, but not suitable for our circumstances.
They use one investment company and when a parent asked what happened if it didn't generate enough funds from the capital to support their child, the answer was along the lines of that's never happened so that's not envisaged. However, the person giving that reply was not a financial advisor. DYOR.

https://www.mencap.org.uk/PFTF
https://www.mencap.org.uk/willsandtrusts

If you want to do it independently, you'll need a STEP solicitor, I emailed a couple to ask a few preliminary questions and without answering any of my questions, they both suggested I join the Mencap scheme as it would be much less costly for me to set up.

Look at your pension scheme, does it have provision for disabled dependants, if so, make sure they know that's an option you'd like to pursue and get all the medical evidence you'll need sorted out now, so it's there if needed.

Do claim DLA, it's not means-tested nor are there any checks on how it's spent. PIP has to be claimed from 16 onwards, it's also not means tested but much more difficult to get. Do take advice on completing the forms, Cerebra is highly recommended for the DLA forms http://w3.cerebra.org.uk/help-and-infor ... dla-guide/

There is a way of ring-fencing a child's own money so it's not part of means-tested assessments, particularly if the child does not have capacity, but it has to be done professionally AFAIK

Good Luck, it's not an easy task, but once you find the right solution for your circumstances, you'll have peace of mind.

Rune

[Meatyfool]

Many thanks for the replies.

Part of the issue was I was checking out the National Autistic Society and not really getting anywhere. But although his diagnosis is autism, I have to admit that the most disabling aspect is his learning difficulties.

Found this - not had a chance to read it

https://www.mentalhealth.org.uk/learnin ... ead-report

A lot of links to look through - thanks once again.

Meatyfool..

[chris]

Hi Meatyfool

But although his diagnosis is autism, I have to admit that the most disabling aspect is his learning difficulties.

You need to be a little careful in this assessment because what this assumes is that if he didn't have learning difficulties, his autism would not be a problem. This is almost certainly not the case and for anyone looking after him, the main issue will always be the autism. Someone with just learning difficulties will certainly not have the same challenging aspects to their behaviour as someone with autism. The learning difficulties make some things more difficult but it is certainly not the most challenging thing. .

We have autistic (PDA actually) and an Asperger's and whilst the Asperger's young adult is high functioning, some of his behaviours are still challenging. We need different strategies with both but the strategies are based on the fact that they have an Autism Spectrum Disorder, not to do with their learning ability

Any one looking after your son in the future will need specific strategies to cope with his autism, rather than his learning difficulties. This will be the key to whether they will be successful in looking after him and it is why many LA placements break down, because the carers simply do not have the correct strategies.

However the advice on getting the wills sorted is still relevant whatever.