Fifiann Our dd is almost 30 years of age and has lived in supported living for over 10 years.
She attended special needs boarding school from being 8 years of age which was pretty much forced upon us as none of the day schools could cope with her but it turned out to be the best decision for her as we still saw her every weekend and she showed improvements virtually overnight. However, it was a massive change for her when she left school to move into supported living and initially we had huge meltdowns for several days which made me feel dreadful.
She now has a gorgeous 1 bedroomed apartment in a managed centre for people with varying degrees of ld’s. Our dd is one of the most seriously disabled as she has sld, complex cluster epilepsy, (Dravet syndrome), and is severely autistic. She is slightly verbal to the level of a 2-3 yr old and behaviour wise is very similar.
Her supported living is fantastic! She has amazing carers - even though the staff turnover is relatively high - and she has a very full programme of activities which is funded by herself from her DLA and PIP. She still has a LOT of money left over each month. Her care is funded 1-1 12 hours per day and 2-1 off site for 12 hours per week. They have baby monitors used overnight for night staff but when our dd is seizing someone sits in her bedroom with her all the time.
We live only 25 mins drive from the centre so see her 4 times per week and she comes home with 2 carers for a morning very regularly. I am desperately hoping she can stay there for the rest of her days as she is so happy. It is so lovely to see her relating to the other service users - there are 22 at dd’s centre - and, as she is the longest serving resident, (She moved in weeks after it opened and the original few have long since left), she is treated like the Queen Bee and they are all very protective of her and visit her apartment to see her when she is seizing.🥰
I am her legal appointee so I control all her finances at the moment. If you haven’t already, I would suggest having a look at the Mencap Trust in order to arrange finances for your DS if he outlives you.
There is so much I could tell you and everything is hugely positive. Initially we had a few hiccups until the Centre management got to know us and vice versa
but we are like really good friends now and they are hugely supportive of our ideas.
So sorry for the long response but I think I know exactly how you feel. If you feel I can help with anything at all then please don’t hesitate to dm me if you prefer.
Good luck! 💐