What Can I Do?

Hello,

There is a section on the website which provides information on parents' rights, planning for the future and lasting power of attorney:

http://www.autism.org.uk/living-with-autism/at-home/caring-and-planning-for-the-future.aspx

I hope that is of some help when thinking about your son's future.

Adél, NAS moderator

Ruddy heck, if the NHS can't make reasonable adjustments you are entitled to in law, what hope is there getting them from anywhere else...

Hi again - I obviously don't know your son, but I wd be surprised if his "living on the streets" remark was down to Aspergers.  Maybe he has thought about things more than he's said?  At the same time perhaps he feels settled at home so doesn't want to think about the future until he has to?  Sounds like a v sensitive approach is needed

I think maybe I have thought about it too soon. Your idea of waiting to see if/when my son leaves and then talking to him is a good one.

He can be rather dramatic, and when I asked him what would he do when I have died he said I'll live on the streets. But is that him not being able to think sensibly is it part of the Aspergers'?

I've just sent an e-mail to my local NAS group to find out where they meet. Thanks for that idea.

I hadn't thought of going down the road of me being too ill to look after myself. But that's me thinking of the very worse! I think that like your son he wouldn't want to look after me.

Maybe siblings, where possible could have a "granny annexe" to their home for Asperger's brothers/sisters to live in.

Have been humnting around the NAS website as there really ought to be something in there about this. It is something often raised by parents as a concern.

Community Care is under "Living with Autism" then "Benefits and Community Care" then "Community Care for Adults".

This is where the Moderators could help (moderators please........) as they can tell us where in the website they have filed their guidance for this situation.

But I know somewhere there is some legal guidance for the long term position after parents are deceased.

The other way is to search the directory, bottom right on the Community page, for Parents Groups in your area, or the one nearest, who may well have information on this issue. It is really important that parents can access good advice on this.

Hi,

same situation for me, apart from I only have one son, he is Aspergers and I am a single parent. It can be a difficult & painful thing to talk about, but it seems best to start talking sooner, rather than after a crisis. I found it helped to talk about the idea of myself getting ill or having to go into a care home to start with, then got on to the topic of whether my son would be prepared to look after me if I become frail.....his answer being no, he wouldn't.

As others have said, talking to Social Work & asking for an assessment is the first step, as housing applications and funding for support will be handled by them. They ought to have info about what's available in your area.

Hi again - as there's no hurry you can take it easy with this.  How do you think he'd react if/when his brother moves?  That may be a starting point for a chat.  We understand it's difficult, especially if he's settled with you in his family home.  However, he may have wondered about the future so it's finding the best way to talk about that.  Does he know anyone in supported living?

I'll enquire at housing associations in my area. It's so hard planning his future when the reason for it is I've died.

It sounds like you really have the t-shirt etc. It's finding the right way to talk to him about it. I don't want to sound like I want you out of the door whilst your brother can still live here. But I don't want to leave him totally confused, not knowing what to do when we aren't around.  I'm not thinking that I'm going to 'pop my clogs'  soon and my husband feels fit and well too. It's just really having something in place when we aren't around in 20 or 30 years time. Unless our numbers come up sooner.

Hi - he doesn't have to move any time soon (presumably) so discussing the future can be taken gradually.  As Intense has sd, have a word with social services so you know the position in your area.  My son is in supported living.  For this to work your son needs a gradual introduction to it.  Maybe a visit or 2 after you've talked about it with him so his opinion has been taken into account.  Also you/he need to find the best care organisation for him + the right environment for him.  I've been down this road, got the tee shirt etc, so in my opinion you wd need to find :  the best autism specific care provider your council has on its list.  Some care providers are generic + have an "autism service" aswell as other services.  I think a provider devoted purely to autism is best.  Even then, really check them out.  You shd be able to go to a mtg organised by social services to do this + ask any questions + then choose.   Then there's finding an  environment he wd feel comfortable enough in. Eg:  wd he like to share a property?  If so, with how many?  Wd any of the others in that property have habits which wd irritate him?  What's the turnover in the property?  Wd he be more comfortable in a flat or bungalow rather than a 3 bed semi?  What's the area like?   Things like that.  It looks like you've got time to be able to discuss + plan + then put things into action if it works out that way.  This is far better than a crisis developing and perhaps an emergency placement having to be found extremely quickly that might not be particularly appropriate.

As an adult with a disability he is legally entitled to housing support according to the Autism Strategy.

Has he had any assessment of need from social services?  Housing associations have independent flats for people with autism with access to mix in communal areas and a site manager/support staff set-up.  I would start planning ahead now, there could be something in your area so that he could move soon and be already settled by the time any need arises.