I’m new to the forum and have joined to help my parents find an independent housing/care solution for my sister, who’s 34 and has a learning disability. At the moment she lives with them near Reading (but in West Berks local authority): the situation’s increasingly fragile since my dad - who’s nearly 80 - had a mini-stroke last year, so mum’s looking after them both.
For our family the ideal scenario would be a local house (preferably South Oxfordshire) which my sister could share with 3-4 other adults in a similar position, with care managed by parents/carers but delivered by a support worker. The challenge is finding people who might consider this (or another solution which reaches the same goal). Any advice on helpful organisations/forums/people would be gratefully received.
Hi what a brilliant idea I have been seeking a similar solution. My daughter is in her early thirties and moved to supported living over 5 years ago.
Part support from a direct payment and part support from the direct payment to the service provider who provides support to the other residents.
This should have worked really well but the service provider put every obstacle in the way as they were not happy with this arrangment and felt it was a conflict of interest!!!
Thankfully another service is now in place they are receptive professional and caring a far cry from the previous providers.
However from my perspective and my daughters the poor management leaves a great deal of mending/repair to be done to the residents and as she has been quite damaged by this experience we are hopefully moving on soon.
I wish you every good luck my daughter has used her direct payment for the last 14 years to buy in support and this has worked well.
If you get involved with a service provider be very clear of their role and any promises they may make to take on the support.
The service provider in my daughters case promised personalisation and to be there to support people however they simply did not keep their promise and complaints were turned on me I was treated like a whistleblower.
You and your parents know your sisters needs better than any one.
I wish you every good luck and hope it goes well for you it may well take time to set up but well worth it.
Thank you for the response and support, which is much appreciated. It’s encouraging to hear that the situation has worked for your daughter - in spite of the initial issues with care - and that you’ve been able to keep control: I agree that family has the best sense of what needed.
One question: does your daughter share her house with any other adults? If so, how did she find her housemates? My sister is extremely sociable so a shared house is definitely preferable, but meeting families in a similar position is tricky.
Hello there, I am mum to a disabled young lady who is looking for a housemate. I am assuming from you post that your sister is quite able but if you wanted to chat about this, please reply to this with a contact method. I could probably offer some advice at least…
This is just the sort of thing we want the forum to be used for- people sharing ideas, resources and helping each other.
There are some great resources out there that may help you to think things through.
The Housing and Support Alliance is a mine of information on these kinds of issues, as they can give you independent advice on housing and support options.
Are you living in Oxfordshire?
It may be useful to contact the South Learning Disability Team in Oxon as they may know of other families in a similar situation who are looking for people to share a property together.
It may also be worth posting on the Oxfordshire Family Support Network and on the LDOX Facebook page to ask if there is anyone in a similar situation.
There are housing providers, such as Golden Lane Housing, who may be able to link families together in a similar area who are exploring options.You can log enquiries on their website.
It may also be worth contacting the Oxfordshire Association of Care Providers to know about the range of options as far as care provision is concerned.
I think the key thing is to make sure that your sister has had a recent assessment of her care needs so that you know what the likely budget will be for her support, as some families have found it difficult to get funding for their relatives when they get together with other families and this has made it difficult to go forward, unless they have eligible needs and a funding package agreed at an early stage in the process.
Oxfordshire County Council are working on a guide for families considering self -funding for housing.
If you mail info@oxfsn.org.uk with you contact details, we can send you the draft booklet - though it is work in progress- but it does have some useful points to consider.
Thanks for the message, Neil, and apologies for the delayed reaction. The posts from members here have been very helpful for info-gathering, though the general situation is unchanged. Please keep me in touch if you see anything else that might be relevant!
Wishing you and the community a very Happy Christmas,
The main sticking point is finding the people, which is why this forum is useful. Our feeling is that we need to find people/families in a similar position before we can get too far with logistics.