First time on here, and I wonder if anyone has any advice or can recommend books that can help with settling into supported living. My nephew is 26 years old, and has learning difficulties and epilepsy. He moved into supported living accommodation about six months ago, but is finding it hard to settle. It was a difficult decision for the family to take, but the right move for his long term future. His house is lovely, clean and safe, with very helpful carers. And only 10 minutes away from the family. At the moment, he comes home one night a week to see his mum, dad, brother, grandma and me. His mum takes him horse riding the next day, and drops him back to his house that evening. He is mostly reluctant to go back, and wants to stay at home. If we contact him during the week to maybe pop in for a cup of tea, find out how he is or take him out for a few hours, then he asks to come home. Any advice would be greatly appreciated.
Supported living settling in: First time on here, and... - Mencap
I would leave activities for him to do like colouring books, ipad, radio and the like - so that the carers and he has something to do. I see my son in weekend, letter tracing, stickers and abit of yoga and we give him home cooked food for three days - the rest we give money so that they can do the shopping but this means he misses home less.
Dear indervir, thank you so much for sharing your ideas. My nephew does love his iPad and listens to a lot of his favourite music on his itouch. I love your suggestion of giving him home cooked food for a few days. Will definitely try that.
Awww bless him. It's such a massive step for them isn't it. Does he attend a day service or any social clubs such as mencap socials? The clubs I attend with my son has several young people attend from supported living, the carers bring them along and stay with them. The busier he is and the more social connections he makes the less time he has to pine for home. Best wishes.
Dear Shue, it is a huge step to be sure. I think he is doing so well, and we just have to help him with the odd wobble. He does indeed attend a day social club once a week, which I know he does enjoy. In fact, from what we can gather, he helps to serve in their cafe, and he has definitely picked up the habit of tidying cups and plates away at home ! The house also organises cinema/cafe trips/farm visits, and they are great with that, weather permitting.
Thank you so much for your feedback, and best wishes to you and your son.
It must be hard for you all, when he asks to come home. We have the opposite situation with our son, who has been in supported living for 5 years: he enjoys coming home to visit, but loves his flat so much he refuses to stay over at our house. That's not to say that where he lives is perfect by any means, but here are some suggestions.
1. Has he got a mobile phone to keep in touch with you? Our son has severe learning disabilities but manages to use a simple mobile which is programmed with only 2 numbers so that he can't call anyone else (no keypad, just 2 buttons). I can find the details if you think a mobile might help.
2. Does he have a visual timetable, which could help him to feel more settled and secure about what's coming next?
3. Could someone write a "social story" for him to help him settle and find going back less stressful? We have found social stories useful. Happy to give further details if needed.
4. I like the suggestion about home- cooked food. One thing we do is to discuss his menu for the week with him and put a copy up in his flat for his carers to follow. He usually has his evening meal at our house twice a week, and on those evenings I involve him in preparing the meal, which will be something suitable to take back an extra portion with him for the next day.
Dear Winnie555, Thank you so much for your considered feedback. I hope that we can work toward my nephew feeling the same way. He is 26 years old, and has been in the place for about 7 months. Still very early days for such a big move. How old was your son when he moved into his flat? And did he take time to settle in?
My nephew is happy to use his itouch to communicate with the family via FaceTime. It does give him the opportunity to ask to come home though, which I think that the carers are not to keen on. If we can get to the space when we can just chat, and find out what he is up to, then that would be fantastic.
There was talk of a visual timetable, to help him see what is coming up and when, but I'm not sure that happened. You have reminded me to chase. My nephew has no concept of hours, days, weeks, months. Everything happens in the moment.
I'd love to know more about your 'social story ' experience if you can share.
The home cooked food is a fab suggestion isn't it.
Thanks and best wishes
Hi again. Our son is 23 now and has been in supported living since he was 18. He settled in quickly perhaps because he was used to having respite stays in school. Last year he moved to a different flat, but the same kind of supported living arrangement, much nearer to us. He found that move more challenging and we have had real problems with his behaviour, but he still loves living there.
We have used various social stories to help our son with things he finds challenging. For example, he has problems around food, always wanting more and getting angry if he can't. His special school wrote him a social story for use at home and at school. It had photos and familiar symbols in it, as our son doesn't read. It was written from his perspective, e.g. "I sometimes find mealtimes difficult." It went on to describe the desirable behaviour we were hoping for. It ended saying how happy his teacher and his family are when he is calm at mealtimes. We used to read it to him regularly and remind him about it whenever he started to get agitated around food. His first supported living setting used the same symbol software as his school to make new stories. Here's a link to some information about social stories which might be useful.
If the link doesn't work, you can just search on "social stories formula" and it should come up.
Hello. This may sound obvious, but is your nephew able to express what he misses about home so much. I worked with a family recently who,s 3 Autistic sons were finding it difficult to transition. 1 to supported living the other 2 to respite. We found that there were particular items that we replicated for them, this did help as they acted as a comfort trigger. i think you should look into community Mapping and see how you can expand your nephews social network so there is less reliance on the family. Its not easy and good luck
Dear KP69, that's a great observation.........he is very communicative & chatty, but rarely expresses his feelings in as many words. We haven't asked directly what he misses about home, only that when he does ask to come home he gets a bit teary, and says that he wants to be with his mum, dad and brother, and that he'll be good if we let him. One of the things we find hard to articulate to him is why he is in the new place. He is 26, and the family are now in their 50's/60's/80's, so we are thinking of his future independence.
In his room he does have home comforts such as his iPad , TV, games consoles etc, and he choose posters & bedding himself.
I'm not sure if I understand community mapping, but will do some research from your suggestion.
Sincere thank you for your feedback & good luck.
This might seem obvious - but how is he getting on with the other people? Are there other people living there, or just the support staff? Is he lonely, or not getting on with someone? Is he getting enough time to himself?
It might be that some support to make some friends and widen his social circle a bit might help - or even some support for him and the support team to get to know each other if that is proving to be a struggle. It might be that there are other options he'd prefer better - lots of people like to live with friends, and others prefer being on their own. It might be worth considering whether an advocate could be helpful for him to think about what he wants?
Dear Sarah_Health_Policy, he is great with getting on with most people.....some more than others. He has his favourites in the carer team. There is one other person living in the house at the moment, who has challenging behaviour to say the least. She was the only occupant of the house before my nephew moved in. She is very demanding on the carer, particularly if there is only one carer for them both, and tends to be very verbally aggressive. We had words with her in the early stages, and she did improve her behaviour, which is mainly directed at the carers, some of whom are inexperienced in the role. My nephew is not used to that in his home. The mood blows hot & cold in the house. He does have time to himself, particularly if he chooses to do that himself. He has a lovely room with TV, games consoles etc. The home is one property of three, very close by, that are run by the same group. The other places have about 7 or 8 residents, and there are shared parties, and other social days out, which he does enjoy. What role would an advocate play, and have you experience of that?
Thank you so much for your generous feedback.
Hi there, whilst I don't work in advocacy at the moment, much of my career has been spent working in advocacy organisations - supporting both groups and individuals. If your nephew would like some support to speak up about how he is feeling about where he is living now, an advocate would be able to help him work through some of that, and to get his point of view across - sometimes that's not easy, particularly if you're not used to being included in decision making. Advocates can also help someone initially to explore their wishes and feelings about a situation, which isn't always easy either without support.
It may be that some of the issues you've raised in the house come to light through that - and an advocate could also help him to think about complaining if he wasn't getting the support that he needed - or indeed if his housemate isn't, with the right support she may be able to enjoy a better quality of life too. It sounds like there will be pros and cons to him with where he's living now - but the atmosphere in the house doesn't sound easy, and I think I'd feel like not going home sometimes too if I was living there! I've also known advocates support people to make a case for moving accommodation/support providers if things were not working out.
Advocacy is commissioned locally, and there are different providers in each area. Usually an advocate will work with a person with a particular issue in mind, rather than looking to create a long term relationship, but they will usually work with the person over a number of sessions, some providers may work with a time limit, some for as many sessions as it takes.
The local learning disability team, or adult social care dept should be able to tell you who provides community advocacy in your area and a bit more about what's on offer, which you could then explain to your nephew to see if he'd like to talk to someone. There may be a little wait involved as they are in demand, but hopefully it shouldn't be too long.
I hope things work out for your nephew. If you have any issues accessing advocacy, do give the learning disability helpline a call - they may be able to help you find alternative provision or help you make the case for why it is needed. Good luck!
Following up on the visual plan for the week. It took me 3 goes to get the right mix of images and words but my brothers loves it. He asks for tweaks So I know he uses it. When he is home in the flat there are suggestions of what to do.
He also has a clock (for dementia patients) but it says the day of the week and whether it is morning or afternoon.
Does he have some of his stuff from home? We went for a mix.
I know a friend uses a DVD player and watches a dvd library he has built up.
It sounds tough for you. My brother sees my parents 5 days a week but is happy to go back to his flat. They are always in and out of each other’s homes.
Dear 1497, thank you for the tips.
I’ll check out the clock....I like that idea.
My nephew does have some items from home , like a tv, PlayStation and iPad, all of which I know he does use.
He comes home one night and a day a week. It’s difficult to know if that is right, or maybe with time, that will become his routine.
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