We need to sort out will/ trust/ guardianship for dd with complex needs - where do we start?

[peggyblackett]

As I haven't a clue :(

DD1 is profoundly disabled and will need full time care around the clock for the rest of her life.

DH and I need to write a will, and in it we need to include details of guardianship for all of our dcs. I have no idea how we go about this.

Are we best finding a solicitor who specialises in SN cases, and if so, how do we find someone good? Can any charities advise us?

Also, we don't have anyone who we can ask to pick up the care of dd1 - both sets of GPs are getting too old, and DH and I only have one sib between us. However we do have friends that we could ask to be guardians if dd was placed in a residential environment e.g. school, however I have no idea of how we would ensure that she got a place if we were no longer here :(.

If you are in a similar situation, what have you done? It is heartbreaking that we need to even consider this, but I know that we can't afford to stick our heads in the sand any longer. It's not fair on dd1, or our parents, if we don't get this sorted soon.

I can recommend people if you are in Scotland, but not if you are elsewhere. Sorry.

Thanks AP, but sadly south of the border these days.

There is a MN'er who specialises in wills, I think she has an advert in the classified section, or she used to.

Mumblechum1, if she can't help you I am sure that she ill be able to point you in the right direction.

MENCAP provide help on Wills and Trusts here www.mencap.org.uk/what-we-do/our-services/wills-and-trusts including a list of solicitors

Our local special needs parents group runs occasional sessions on Wills and Trusts. Check out if anyone is running a session (Mencap used to I think)

The basic information I gleaned from a recent talk by a solicitor was that you need to set up a Trust fund if you envisage your DD inheriting money from you, or other friends or relatives. You then need to look into getting Trustees which is complex. If you don't set up a trust fund, any money inherited will affect your DD's benefits when she is an adult. If you have no money and noone will leave your DD money, there is no point going to the expense of setting up a Trust Fund.

I have been quoted £600 plus to do a Will and a Trust Fund. I have never been able to afford it! Cerebra can help towards the costs but when I contacted them, they were not giving out any money for this and they have never been back in contact. The Lord will provide...

I am sure they can also advise on the guardianship issue too. I suspect that if your DD ends up in a residential setting should - God forbid - anything happen to you, she will be looked after by the state. Unless someone takes her in and formally takes on the parental role, I don't know that they will have the power to make decisions on her half, but I'm not sure

Thanks bakelitebelle.

We probably need to have some frank discussions with our families about whether they plan to leave any money to dd1. I suspect they'd like to, but if it creates more hassle for us/her we may need to look at other options.

I will go and have a read of the Mencap pages now. Ouch at the £600.

Fivegomad - thanks, I will see if I can contact mumblechum too.

Wish we didn't have to do this :(

Yes, that's what scares me BB. My experiences of state involvement to date have not been good. I want her to have an advocate, and not to be left solely to the state.

The state should provide an advocate in cases of Looked After Children who have a severe disability. Our local one is very independent minded and seems excellent. The mental capacity act also forces the state to consider the best interest of the person (not sure if it's applicable to children), and the independent mental capacity act workers seem to be very thorough. Hopefully, none of this will ever become relevent.

If I thought DS's welfare was going to be solely in the hands of social workers I would be very worried too!!

That makes me feel a lot better BB! I had nightmares visions that dd would be left to the care of a SW.

our county has a carers service (ours is called carers in bedfordshire) and they will give you advice on what to do etc. I have my had firmly int he sand though. No-one will be able to look after our dd either :( No-one appears to be able to now, so i haven't got a hope in hell of finding anyone to do it in the future

Oh Agincourt :(. I know that feeling.

We have a comparable carers service here, so I will try them too - thank you.

Time seems to be going so quickly as well. She is 12 now, 13 this year and I feel really frightened. We carry on coping day to day and that's all i feel we can cope with atm. How old is your daughter? Here not many girls have such severe SN. My daughter goes to an SLD/PMLD school and she is one of a handful of girls there!

Hi everyone, i set up a discretionary trust with the help of a Cerebra grant and an experienced solicitor. Cerebra were great they made it all very accessible and talked me through it. www.cerebra.org.uk/English/gethelp/willsandtrusts/Pages/default.aspx

I know what you mean too about being worried their care will be left to a social worker. At my daughters last child in need meeting my social worker said 'oh X (my dd) cannot be left to go out alone into the community AT THE MOMENT' at the moment? wtf?! She has the mental capacity of a 2 year old, is on p scale levels, has sld, chronic epilepsy, doubly incontinent etc etc etc and he thinks she will eventually have the capacity to go out into the community ON HER OWN I don't think he has a clue and it is frghtening!

Hi Agincourt. She's almost 8. We are trying to get our heads out of the sand on lots of things - approaching puberty, wills, residential placements for the future.....not that any of these things need to be sorted now, but just because I find it easier to deal with stuff if I have a plan.

Obviously her needs will change over time, and who knows what will appear out of the leftfield, so the plan will have to change. However I can't cope with having nothing in place as it makes me hyper control freakyanxious. Yes, agree with you on being frightened - us too.

And WTF at her SW?! Sadly it doesn't surprise me.

summerl0ve thanks for the info - I will contact Cerebra as well.

Hi

I've set up a discretionary trust.

It's not that difficult to do.

You need a min of 2 trustees.

Each year I have to complete a tax return for the trust.

Don't forget to apply for vulnerable person status from HMRC (if DD gets DLA)

Loads of advice and info on HMRC website.

Thanks WetAugust. It's good to hear that it's not too onerous.