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Supported Living - Page 2 - Carers UK Forum

Supported Living

For issues specific to autism / Asperger Syndrome.
My son has been in a privately rented flat, living on his own with carer support, for the last 10 years. He is very proud of his flat, it's far tidier than my place, but he's had endless problems with care providers and is socially very isolated.

Your Social Services Department at HQ level probably has a list of clients looking for special needs housing with support. Mainly for those coming out of long stay hospitals, where a lot of the money is coming from, but there is a county wide team.

I would suggest the ideal is a group of flats with a social area for them all to meet, so that sharing staff is easier.
Also, make sure your son's name is on the council waiting list as soon as possible. Apparently these are in the process of changing the priority process which might work to your son's advantage.

In the New Forest, there is only a gap of about £2 between son's rent and housing benefit, which he can easily cover as he gets both Care and Mobility PIP. Make sure your son gets the highest rates if he possibly can.
Mine has the "on call" service provided by another shared home 100 yards away, should he need it, and he also has an Oyster phone/tracker. Put that on your list of things to consider and arrange.

Undoubtedly, the key issue is the calibre of the staff.
Can they cook?
Can they add up or use a calculator? Staff will be managing his day to day money, and this is THE biggest problem area. I've been dealing with accounts for 40 years, and have provided easy to complete forms and offered to talk them through the forms. I thought they were idiot proof, but if staff refuse to use a calculator and can't do mental arithmetic, it causes endless problems. When your son is nearer to moving in, send me a PM and I'll fill you in.
Don't rely on social workers to protect your son from financial abuse, they are useless too!!

Including PIP etc, my son gets far more money per week than I do, and as I restrict the amount staff have access to, there is always some money in a reserve account that I control, to pay for all the usual household expenses. In the last year he's needed a new washing machine, for example, not provided by the landlord.
Bowlingbun

Thanks for reply. That's good it's not much more than lha. It's a bit more here unfortunately.

You have given good advice regarding asking them to keep forms of money spent. It is such a shame theres been problems regarding the financial side ..it should be so simple.

I am looking into getting the Oyster.

I am so sorry to hear your son is isolated, are they trying to rectify this? That is a worry for me too.

And yes, having others near is the best idea so they can share support.... and thanks I will definitely pm you for more specific advice when he's going to move in somewhere.

Plus I will get him on the housing list as I have not done yet.

Appreciate advice.
Plus I will get him on the housing list as I have not done yet.


AGE UK ... more useful advice ?

https://www.ageuk.org.uk/information-ad ... e-housing/


Mencap :

https://www.mencap.org.uk/advice-and-support/housing

The £ million question ... how long is the waiting list on your manor ?

( 2 London Boroughs ... you would be looking at years ! )

Internet search ... reveals nothing for nationwide stats.

Best to try using your manor ... even then , may be difficult to pin down ?
Hi Cloudygal,
Sorry I’m late to the discussion but very bogged down at the moment. There is some good info here https://www.challengingbehaviour.org.uk ... -pack.html Although the info is aimed at the more severe end of the autism spectrum / learning disability it’s still worth looking at it.

S still lives at home but some of our friend’s adult children are in various forms of residential care/ supported living. Ensure the home he has isn’t rented from the same company delivering care, otherwise if his care package bread down for whatever reason, he can be made evicted in 28 days. If the home and care are from separate providers, he is more secure.

Ensure if he is in supported living flats with a shared area that staff aren’t pooled to the extent that he is missing out on doing what he wants to do / has planned - a real trigger for distressed behaviour.

Melly1
M's Oyster was provided by Social Services free of charge, after an incident when staff turned up late at his flat, and he wasn't there. Much later I discovered that he'd decided it was a nice summer evening so he would walk to the new Lidl, about a mile and a half away from home, crossing a fairly busy road!!!!! His brain damage means that his road safety is poor, especially when junctions are involved, so he has highest PIP Mobility as he should always have someone with him when he's out and about.
He lived about 20 miles away from the care agency manager, who couldn't drive, crazy because his area covered all of the New Forest where public transport is poor or non existent.
Finally, as I became more frantic, and dusk was falling, he returned back safely from Lidl with the shopping he'd bought.
However, this could all have ended tragically.
This little story highlights more things to think about. The more accurate the Needs Assessment for him before he leaves home, the better.
Bowlingbun

Omg that sounds awful..I can imagine how frantic you were.

I had always thought of supported living as meaning parents dont have to worry anymore, sadly that doesn't seem to be the case.

Yes, I will definitely make sure the assessment is accurate. As my son is the same and does not go out alone.

Melly

Thanks for the link and also the advice which I will take on board. Have you decided to keep your son at home for as long as you can? Have you looked at any places for the future?

I must admit I myself am a bit bogged down too..always so much to do what with extras like paperwork and phone calls.
I had always thought of supported living as meaning parents dont have to worry anymore, sadly that doesn't seem to be the case.


A feeling for low million of family / kinship carers whenever someone else steps into their shoes ?

Hospital stays / supported living / nursing and care homes ... even when a friend " Caree sits " for a few hours to give you a break ?

Once someone becomes one of us , the caring element remains inside you until your last breathe.
I posted a reply to this thread, but it hasn't shown up.

Welcome to the forum, Cloudygal. What age is your son? Is he keen to move into supported living? My daughter was in supported living for 11 years, but it didn't work out for her. That doesn't mean it wouldn't work for anyone. I would suggest the best place to start is where the staff are on site and readily available for support. Initially my daughter shared a house with two others where supporting staff were also in the house, taking it in turns to stay overnight. She then moved to a block of flats, where the staff were in the building but not in the individual flats.

I would have thought Social Services should have been involved with finding suitable accommodation for your son, especially with regard to funding.

I hope somewhere suitable can be found for your son.

Gilli
Gill

Thank you for your reply.

Support on site does seem most ideal..I agree.

I am sorry it didn't work out for your daughter. That is a shame especially after 11 years..what went wrong?,

My son is 24

Social services have not come up with anything yet.
I suspect they are not keen to tell people of vacancies even if they come up as it means they then have to do a full support package instead of parents doing it!

What future plans do you have for your daughter as supported living didn't work out?,
HI Cloudygal,
I have visited a few places. I want to settle S somewhere suitable before I'm too old/get poorly/have no fight left to ensure it is the best it can be. He will never choose to move out and because of his background (see my signature) he has anxiety around abandonment, so it needs to be the right move - from the start,

Melly1