Supported living

[Nelliemellie]

Husband is really keen on our autistic son 22 to live in supported living nearby, we have seen the room and our son has stayed there a couple of nights. The noise from the next room was an issue at night, where he would not get proper sleep. He has college 5 days with an early start. He loves college. My son is very reluctant to leave home and I am having doubts about the place, like there s no street parking, issue with visiting and also I have a bad feeling about this whole thing. So I have said no to this.
Husband is upset that we will loose funding and find it difficult in future. My opinion is when he is ready in a couple of years when he is more mature or when he finishes college he will be ready for supported living.
who is right, I have said we should keep looking for a place he likes. He wants to try it for a month like it’s the only place.
who is right and does anyone have experience of this and about the funding.

I would be very worried if there’s restrictions on visiting. I worked in supported living for 20 years. It’s great when it’s done right but needs careful thought and consideration. I’ve seen lots of young adults flourish. I would look at other options before committing. Your son should be eligible for funding.

I have an autistic son aged 23 living at home. Tbh I've heard some poor feedback locally about supported living placements and for now I'm happiest having DC living at home. Things like support workers not checking in often enough, not monitoring things like food and meds and the DC being left to their own devices, and issues getting on with other residents. For me I know my DC would be looked after better at home, he enjoys our company more than a group of other autistic young people he might be placed with (he did go to a residential college in his teens), he feels more comfortable and like it's his own space, and our home is just nicer and better located than any of the options.

A lot of people do put on the pressure to move to supported living early and that's often so that there is a support system in place when the parents get too old to cope. For us it might be something we'd consider later down the line as we're still fairly young, and I think he is more likely to learn independence skills at home as we interact with him and teach him skills at home.

If your son is reluctant to leave home then I don't see the point of pushing him into leaving. We live in London where NT dcs live at home into their 30s due to housing costs, so I don't see the rush.

Thank you so much for your views, it’s very helpful.

This will be us in a couple of years. We'll be early 50s then. We haven't really thought about it. We've kind of just assumed that DS would be living with us forever, but that probably wouldn't be fair on him or us. I definitely won't be in a rush to though. I think 22 is still a young age to leave home, so I'd look again in a few years when you think he'll be happier to go. Is there a cut of age to get it funded?

nelliemellie..I am in process of transition my almost 21 yr old autistic son into supported living.and have been told now he won't be able t attend his day centre as it is classed as double funding. Am now also in 2 minds as he loves the day centre.and upon visiting the supported living house he liked it his room but only 1 other gentleman in his 50s so am concerned he could be sitting around doing nothing all day and no day centre either. Have you had experience of this ? If you turn it down would it go against you ?

I don't think there's any particular rush or age, depends on the individual. Some people take longer to be ready to move from family and that's OK.

Many nt individuals stay in family home during college or training etc and longer.

Fifiann, I dont believe there is a cut off point. I asked his social worker and she assured me. These supported living houses are a business, they asked us to apply for housing benefit to cover his rent, the food and bills are on top. I understand they have to cover the costs, but did seem a bit like a business transaction. Also my son wasn't keen on it, and caused a lot of anxiety.
He stayed there for respite during the summer for 2 weeks, but not a lot of activities were offered.

@Nelliemellie it's shame to hear places putting the financials before anything else. I would have thought staff, levels of care, activities in and out of the house, local amenities, facilities, ease of visitation (any time is a good time) etc etc all should have come before money. It must be an incredibly difficult and stressful time thinking about your son moving out. The priority should be on giving you all the reassurance you need that he'll be okay, regardless of how important the financial side of all this is. Hope you've had better experiences since your last post

Trust your instinct. It may take time to find the right place. Consider also looking for a housing association property for him. He could then have his own tenancy and have carers to support him. My son has this. He used to be in a supported living with other young people but that didn't work out for him.

I have an adult dd who has lived in supported living for 11 years although she has SLD along with ASD and a very unusual form of epilepsy. (She was at Special Needs boarding school from being 8 years old as the day schools couldn't cope with her needs.)

My advice would be to try and see if there is any supported living within a managed centre. My DD lives in a centre 20 mins drive from home and we can visit any time at all. She has a beautiful one bedroomed apartment with a small walled private patio/garden. She is funded for 1-1 care 12 hours per day and 2-1 for 12 hours per week when she usually goes off centre. Overnight she is covered by a baby monitor by the excellent night staff. The staff are fantastic and just like our really good friends. DD is totally spoiled there by both the staff and other service users. There are 25 one bedroomed apartments - about 85% of the service users are much more able than DD - but with several shared communal areas and a large garden plus BBQ area. You wouldn't need a day centre for somewhere similar as they are constantly doing things and always having bbq's, parties, pizza evenings, games days etc.

Yes it's more expensive than a normal supported living house - these often aren't in great areas either - and in a really good part of town with lots of local facilities within easy walking distance. My daughter pays several hundred pounds per month over and above her usual allowances but it is worth every penny.

Worth doing your homework as IME Adult Services will just want to place your DC somewhere cheap and easy so you do have to fight but I couldn't recommend somewhere similar highly enough. We see her 4/5 times per week but she always kicks us out after 1.5 hours as she has a very hectic social life.🤣

Good luck as I know it is really tough finding somewhere good. We're not in the South but North Midlands so not sure how facilities are in the Southern areas.💐

Just after a bit of advice on supported living.my son has been in supported living since Jan 25. He has 1 to 1 care 24 hrs per week plus additional 2 to 1 for 4hrs per day. He was attending a day centre before 5 days which he loved and thrived..social services and day centre stripped this from him as was classed as double funding. I funded day centre for 6 mths (and social services did not pay day centre for those hours)..the supported living /care home are supposed to be providing structured activities going out in community. I have not seen much evidence and my son is not sleeping and seems to be lazing around a lot.. I want to raise this with social services is it normal policy for them to not be able to change care plan and pay for day centre and reduce the funding for supported living..has anybody had experience of this or is policy for care homes/supported living to always be paid .I feel.like social services want care homes to have all the money and I want to know if it'd worth fighting for day centre as well.. surely this is not law..

I meant to say he has 24/7 care..plus 4 additional hrs at 2/1 per day..