What would happen to my disabled child if anything happened to me?

[maybeb]

Does anyone know what would happen to my severely disabled teen child if I died? Family couldn't care for them, medical needs are complex and moving & handling is physically taxing. Dad isn't in the picture but couldn't anyway (violent and known by SS, couldn't look after a vulnerable child)

I'm not getting any younger, it worries me. What would happen?

Taken in to foster care I would imagine

Have you made a will? By default they would become the responsibility of your next of kin. If you would be leaving any assets behind you could specify in your will that they are to be used for residential care for your DC.

Do you have a will? You need to make one and whilst doing so, discuss this with someone who knows all the legal ins and outs of such situations. They can advise how best to protect your child. Ultimately you can state your preferences as to what you'd like to happen, and do your best to enable it, but you also have to be realistic.

If your child will inherit money but not have the capacity to manage it, the office of the public guardian will probably be involved, unless you can set up any sort of LPA with someone else on your child's behalf in advance.

I'd spend money on a decent solicitor to advise re this rather than a cheaper "will writing company".

I'm sorry you have this extra worry but with care you will be able to make the transition as smooth as is realistically possible.

If under 18 they'd most likely be placed in foster care.

If over 18 they'd likely be placed in a residential home. As a young person this is most likely to be a shared house with several staff on the premises 24/7 and a registered nurse, shared with 2-4 other people with similar difficulties. There's very few large, specialist hospitals remaining, though if it were the only place that could meet his needs then he would be placed in one.

Do you have other professionals involved? This is the sort of thing you could get everyone together to talk about and make some sort of plan

You may wish to start having these conversations with social services, more so when they hit transition age (18-23) as to what setting is most appropriate to meet their needs - home, supported living or residential care. If you are an older parent you may want to seriously consider at what stage you look at making the move to reduce the traumatic impact of relocating.

My friend is in a similar situation with her DS. He will never live independently. He's 15 now, she is making sure that when he's 18 she does a very slow transition to suitable assisted living for him. I don't think she wants to think about what would happen if something happened to her before then.

Do they have carers at home? If so potentially one of your relatives would stay at your home until something more appropriate was found. Otherwise if need complex enough they'd go into hospital until a suitably trained foster carer was found, or just straight into foster care if not that level of need

Contingency planning is something you can discuss with his social worker.
For example where does he go for respite?
As is teen transition planning to adulthood starts from age 14 in annual ehcp and person cdntred planning meetings
Have these discussions
Find out where local young adults with complex needs go
E g there is respite centre in our LA which tskes in adults in these situations til long term care is sorted (some form of supported living)
Getting dc used to overnight respite care is a good thing to do

It’s really good you are thinking about this and also I know how hard this is as well. But really important to start planning what will happen post 18 and beyond so that he eventually makes a transition where you are all happy and you can see he is happy.
Its what all us parents to disabled children worry about - if you want a hand hold and are anywhere in the north east I would be happy to help.

Im guessing you have a social worker so perhaps discuss with them. The transition into adulthood will be part of any EHCP. Make sure that you do a will leaving any property in a ‘vulnerable persons trust’ so it does not count as an asset when Ty assess for social care or universal credit. Make sure you appoint decent trustees for the trust. Also do a power of attorney for whilst you are alive but maybe incapacitated.

As I understand matters depending on how bad it is, there might be supported living with carers a certain time per day etc. if severely disabled some form of care home. I’m having conversations now about my son, who is not so severe but a the moment can it live independently. It is a worry - especially at 3am!

There is no point worrying as you might live decades. Social services will discuss arrangements with you.

The issue might be when will you decide not to care anymore as you get older and can’t cope anymore.

If I'm honest, I also have a child with learning disabilities and I often lie in bed awake all night worrying about exactly this. Their dad isn't in the picture, doesn't even know of said learning disabilities. I can't get a family member to babysit without one hell of a fight for so much as an hour and they do the opposite of what I say when they do, which heightens DCs behaviour and stresses them out. The thought of DC having to adjust to my absence frightens me more than death itself.

The thought of DC having to adjust to my absence frightens me more than death itself

this is why you need to get as many major transitions completed before anything happens, let them process one stressful event at a time.

And this is why you absolutely must start transitioning your child now. These young people are so so distressed when a parent dies and all of a sudden they are in residential accommodation without the support of parents facilitating this. Start it now and you can choose to an extent, visit together, have short visits, build them up, have him home for weekends etc etc.

@Somanycats it depends what age the young person is - if they are under 18 it probably won’t be possible to start any transition visits. Also your body tone sounds a bit like you are telling OP off - this is a big thing which she is clearly starting to think about

Dsd lives in a shared house with 24/7 care package. All residents have care needs. This is the standard arrangement for over 18. You need an iron tight will to ensure that the money goes into a trust that doesn't affect benefits. Dsd's care is astronomical

Dsd moved when she was 22

I only know a few. One went to residential care well before the parents died. Three into foster care. The childrens ages mattered. Of the fosters, one was adopted by the foster carers, the rest went to residential at the set age.

You need a will, watertight. And if your planning to ask family or friends, you must get their go ahead if you want them to take over care.

Residential care can be lovely.

The next of kin would not be the default carers. Social services would assess them to see if they were suitable and willing though

If you were to pass away suddenly, Foster carers would be found by SS
I'm hoping its a hypothetical question and as your child gets older you can make plans so that they are settled long before anything were to happen to you

That's rubbish. People aren't things to inherit! If they are disabled or vulnerable then social services will decide where they should go.

It is very standard to specify in your will who you want to look after your DC should something happen to you (in fact having a child is a major prompt for most people to make a will) and mostly commonly, ie the default choice, that person is the next of kin (parent/sibling/adult child). Of course if OP doesn’t want anyone to become guardian she can specify that (best to be as clear as possible in wills), but it’s generally thought to be best for a child that someone has PR for them. (I’m assuming the father doesn’t currently.)

But the person chosen has to consent AND if no one has PR, the state have to satisfy themselves that the chosen person is suitable. Just stipulating it in your will doesn't mean it's going to happen.