Adult Residential Unit??

devmcc

Hi all...
Not sure where this would go as a new thread as it is not related to money savings but I know you all have so much advice to give!
My 26 year old sister is mentally and physically disabled and has been since birth. She has lived in the family home with my Mum & Dad and has a more active social life than any of us!!
My Mum & Dad are getting on now and are looking for a residential placement for my sister – they do not want her to live with any of her siblings and have left the majority of their funds in a trust for her care.
The trouble is we are finding it impossible to find any such place – we have searched high and low but it seems there are only places available to adults who were placed as children.
She is unable to live unassisted and does require full time care but is not sick as in needs to live in a hospice.
Does anyone know of anywhere we can go for help – or even better of any places that offer such services?
Any help would be great as we are getting to our wits end!

scruffy96uk

Can I ask where you stay? Just to give me an idea of your local council etc

anguk

Does your sister have a social worker who could help? My friends sister is physically disabled and has lived in a residential home that takes young adults since she was in her 20's. A social worker should be able to help you.

I've found a website where you can search for a care home according to your needs, I don't know if that's any help?
http://www.bettercaring.co.uk/index_pub.cfm

elsien

There are many homes for people with disabilties - not having been in care before is neither here nor there. See CSCI webpage for details of those in your area - they also publish inspection reports, so you can get an idea of how well the home is doing.

Your sister will need a community care assessment from social services, to help make sure she is correctly placed, and to access funding. Even if there is money in trust, she may still be entitled to some benefits, and to funding for personal care from social services. Many homes only have people referred to them via social services, because they have to agree the funding, so they want to make sure that they are paying for the right amount of help - some small homes have 24 hour care with one or two staff and sleep-in staff, whereas others have more staff on duty at a time, and staff doing wake nights. What your sister needs will depend on her individual support needs, and the assessment will be used to decide which homes are most suitable for her.

Your parents also have a legal right to their own carer's assessment - this looks at their own needs, and is completely separate from your sisters. They do not have to have one, but if they are having difficulty in some areas eg manual handling if your sister needs lifting, disturbed nights if she needs help in the night, this will help put the case for your sister needing to live elsewhere, for their sake as well as in her best interests. They may need to ask for their own assessment if they want one, as some areas 'forget' to tell people it is a legal right. Contact carers organisations for more detailed info - I think the Carer's helpline also has a website.

There is also the option of supported living. This is where your sister is helped to find a suitable house/flat/bungalow through the council or housing association, either on her own or with a friend according to her personal preferences. A package of care is then put in according to your sisters assessed support needs. This can include 24 hours support day and night - although you may have to fight for that- some areas are already doing this, others say they can't, so it depends on where you live and how progressive the council is.

The main differences are around money (your sister can still have an appointee if she needs it , either way. In residential care, benefits pay a small part of the fees, social services pay the rest, and your sister gets a small monetary allowance plus her mobility dla for her own spending - social, toiletries, clothes, holidays. Food, bills etc are paid for by the home. The downside is communal living is not for everyone, especially bigger homes, where people may struggle to get more individual support to do what they want when they want. Even in the best homes there is always a balance between individual and group needs, especially if the person cannot go out independently.

In supported living, the money comes more from benefits, with social services paying the personal care bit. People are responsible for their own bills for daily living, in exactly the same way as you or I ( with all the help they need, for those who lack the capacity to understand the concepts involved.) The pluses are far more choice and independence, and from my experience, people using this system have more money left over after paying the bills to be able to live a decent life.
It can work for people with severe physical and mental disabilities, and can give a higher quality of life if done correctly. The supported living set ups I have come across are where contracts to provide staffing are given to organisations/charities (via social services) who have back up in case of staff sickness, holiday etc, so the person and their family don't have to worry about someone not turning up.

Another option (which I know very little about) is where the person accesses money via the independent living foundation, and chooses/hires their own staff. This probably works best for someone with a strong support network of family/friends, but wouldn't be ideal if you were looking to the future when your family were no longer willing/able to take on the burden of hiring/firing/wages etc

Either way, you need to contact your local learning disability team. Every area has one - phone your county council social services and ask for details. Be aware that in areas such as Worcestershire which are seriously financially in trouble, social workers may only be allocated if there are real problems and places are at risk of breakdown. Know your rights, and be prepared to be persistent and make yourselves a pain in the backside - if you wait for people to get back to you, they may never do so. Be prepared to chase, keep chasing, and make sure any option offered is in your sisters best interests.

Be aware that in many areas, residential care is only offered nowadays to people with high support needs. Supported living is the way many councils are going - and in my opinion, if done well ( not on the cheap) is better for the person. The care offered may be exactly the same as in a residential place, but with fewer people being forced to live together.

You could also contact the learning disability charities for advice/information. Macintyre, Mencap, the Shaw trust, there are lots of national ones which may have an office in your area: some also have websites and mencap used to have a family advice line, although I don't have details you could probably google it.

Whatever your sister decideds to do, she and your parents are doing the right thing in planning ahead - there's nothing worse than someone being uprooted from their home into an emergency placement with no preparation due to carer's illness or change in circumstances.

Good luck, and I hope she find somewhere she can carry on her social life to the full!

GiveItBack

The only thing I would add to what elsien has said (as they've covered a lot more than I could) would be to check the condition specific charity websites as they may know of places that specialise in caring for people with similar conditions. I think Leonard Cheshire may suit, depending on the type of place they have in your area, and the exact condition that your sister has. Best of luck.

GiB

soolin

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devmcc

Hi again - thanks all so much...
She was born with hydrocephalus and has various other disabilities – mainly she has severe paralysis to her left hand side & is very unsteady on her feet.
We are based in Liverpool but would travel to wherever she would be happiest.
Thank you all so much for being so supportive - I was worried people might think I was passing the buck but this has been the hardest decision the family have had to make.
I am going to contact all the forementioned areas and will let you know how we get on...
Hope you all have a smashing week and thanks once again... x

ms.manx

I work in a adult residential home for people with learning disabilities. One thing that I have noticed is that none of my clients with trust funds ever get to spend money from them. They receive enough money from benefits to pay for everything they require, often with surplus benefits building up in the bank. Before your parents commit a large sum of money into trust for your sister, it may be worth them investigating whether this money will actually benefit her or whether it will affect her benefits/sit in the bank forever. My clients would probably benefit more from being taken out shopping and being treated by their families than having trust funds as it is so difficult for staff to buy anything expensive for the clients without having problems justifying it to other staff and auditors.
My clients need to pay for toiletries, clothing and things they want in their room and some social outings. Food, heating, transport etc is all paid for.
The home I work in is a nice place. It is warm and welcoming. The only issue that I have is that I believe that everyone should make choices whenever possible for themselves. Some staff can be controlling (ie How many drinks are allowed, whether clients are `allowed` to sit in their rooms, all made to eat the same meal etc)
When your sister finds a place, I would suggest visiting without prior notice at any time of day. Staff seem much more conciencious (sp?) when a client has regular (and unannounced) visitors. Also question staff during your visits as to policy and what they are doing to assist and enable clients to live a full life. Also attend all the care plan meetings. Ask questions, make staff justify their actions, take your sister out and get a feel for the way the staff care for her from what she says. Make sure she keeps an active social life and doesn`t start missing out due to staff shortages/inconvenience of taking her out.
Sorry, turned into a long one! Please email me if I can be of any help.
x x