What happens to children with SN when parents die?

[PatoPotato]

I am terrified of the future. We are going towards ASD diagnosis and at this point they are too young to know what is going to happen. My mind wanders and I think about what will happen when my DH and I die? Will they slip through the cracks? Will their support stop? Will their benefits get shut off because they are asked to attend an assessment they don't understand?

Can anyone provide some clarity?

Have you written a will? It's worth having a bit of legal advice to make sure things are put in place if something happens to you.

I just finished doing mine and in the process learnt that as ds's EHCP and DLA are both his so the management of them passes on to his guardians if both me and DH die. I've also put a special provision in my will that any assets we have left will be held in a disabled persons trust for him. The funds can only be used for him but will be managed by his guardians.

It is definitely a worry but putting things in place just in case is a good way to alleviate some of the stress.

Who do you appoint as Guardians?

I’m an only child, and there isn’t any other family really (not who I could trust, my cousins have severe MH issues and are looked after themselves).

This does scare me a lot. My mum is my uncles carer but if she wasn’t around there he would have no one.

We've chosen some close friends to be the guardians. There weren't really any appropriate family members.

I'm not sure what happens if there are no guardians.

My advice to you is when DC is a teenager, start thinking about where they will need to live as an adult - maybe they can live independently or they will need supported living. Depends on their needs, which hopefully will be more apparent by then. If they are going to need supported living, get them into the social care system for disabled young people, by requesting a full assessment of need, during their teens (over 16), as part of their Transition planning. Get them settled in where they need to live, as young adults after they have left college. It is better for you and DC to choose the best you can find, rather than leave it to the LA the day you die - which will be the cheapest possible place they can find at short notice.

As pp have said, get your will sorted out. I believe Mencap has a list of firms of solicitors, experienced in this field.

I work for a local authority and some of our residents affairs are managed by social services or solicitors: I’m just hoping that we have someone who can offer a more emotional connection (if that makes sense).

OP I’m actually the person with a disability and I know my DParents are worried, but we are try to sort things.

I just wanted to say I know it’s really hard, but remember that you are just at the start and try not to look too far ahead. I have a ASD and need quite a bit of help. I also have a physical disability and I know my parents worried a lot and planned, but I am not as severely affected. You will play put many scenarios in your head (I still do) but remember they won’t all come true.