Exploring living options for my adult autistic son particularly HOLD scheme

[Harriethare]

Hi I am finally facing the supported living options for my 27 year old severely autistic son, he still lives with me at home, it’s time to do this but so hard, local council hardly come up with anything in 3 years!

I was sent to one bed flat which was in a block and no windows to speak of?! I know I can’t expect perfection but really?!

The HOLD part buy/rent scheme has come to my notice as maybe potential place nearby on new build estate. In principle we have passed eligibility but trying to work out how it can be affordable on benefits?

Really interested to hear if anyone has any experience at all?

Many thanks 😊

[Jofisher]

look on the care quality commission website and put in what your looking for and where and hopefully it should come up with some ideas. Speak to me a cap helpline and the Autistic society as well. My only advice to you is keep local and get your deputyships so you can still have a say in his life and gives you legal rights as you never know when you might need that. Good luck this is never easy butI believe it’s the right thing to do for them and for you as a family you’ve done incredibly well to do this for 27 years as it’s tough on everyone. But saying all that they teach you such a lot and can they also give you a lot of pleasure as well.

[Lucacielle]

Hi

We had an initial consultation with HOLD well before Covid. Since then we were looking at other options for our son but as yourself there is very little out there. I will be contacting HOLD again. It will be interesting to hear if you make contact with them. Our son is also quite severe with autism so sharing with anyone is not an option. It looks like he will need a place of his own. Finding a suitable house will be the most difficult part.

[Harriethare in reply to Lucacielle]

Hi thanks for your reply. I have been talking to my safe home and now looking at possible options, I think it is best option for my son after viewing some pretty awful placements as recommended by adult services, I seriously doubt they actually look at them in real life!

I feel more resolved to set my son up in his own home which will at least secure some security for his future. Will post on here as things progress

Wishing you and your son all the very best

[Lucacielle in reply to Harriethare]

Hi

Thank you for your reply...it has helped a lot knowing there is someone who actually thinks the same as me. I'm sure many other parents would take this option!!! Looking forward to hearing how you get on with My safe Homes.

[Granny532]

I have used the HOLD system to enable my son to live independently. It works well for him. I would suggest you speak with MySafeHome in Coventry (unless they have moved recently - try google. We have more contact nowadays with the building society he has his mortgage with than with MySafeHome ). They were brilliant at sorting everything for us apart from actually finding the suitable house or flat which they leave for you to sort.My son receives direct payments from Soc Services to pay for his care. He has a group of paid support workers who he chooses rather than random, constantly changing carers which so often happens in supported living arrangements (not always, but is often the case). He has to.pay a contribution each month from his benefits to Soc Serv towards the costs of his care. He is not left with an awful lot of money after this (there is a minimum guarantee amount Soc Serv need to allow) but he manages ok. A lot will depend on your son's current Statement of Needs and his Benefits awards which might require you to renegotiate as he is moving on from living with you.

Talk to MySafeHome but I would definitely recommend it as an option towards moving towards independent living.

[Harriethare in reply to Granny532]

thanks for your reply, I have been talking to my safe home and gradually getting a better idea of what’s involved. Very glad it’s working for your son, that’s good to hear 😊

[Racoons in reply to Granny532]

Hi what is a statement of needs? Other than being on high rate care pip what else do they need to know about your benefits?

[S3w3ng39]

I am horrified with the proposal of sending a severely autistic adult in a one bedroom flat with no windows. A normal person would refused to live there. I call the proposal an insult to injury.

Our children need space because of their disability. They don't need to be confined in a one bedroom flat with no windows.

I hope there are better local places for your son.

My severely autistic son of 28 lives in a one bedroom flat on the ground floor of a one storey building in a farm setting where other people with a learning disability live. He benefits with being able to go for long walks around the farm.

Our children need space and get fresh air daily!

From

Mum of A

[Harriethare in reply to S3w3ng39]

hi thanks for your reply, yes it is horrifying! Yesterday I was sent to view a 1 bedroom flat in a house of 9. It was an old dilapidated Victorian house and more like a grotty bed sit! The kitchenette had seen better days and I think the bathroom if you could call it that was a converted cupboard with horrible old shower in it, all right next to kitchen area! Really quite shocking! I wonder if the county council ever visit themselves? They told me it was a good place?!

These visits have just confirmed that the HOLD option is looking like a far superior way to go although many hoops to jump through still but more I find out the more it seems like a good thing. My son has no other family apart from me so it really is down to me to set him up in a home that no one can take from him, even if care companies come and go.

Kind regards