We want to look for the right care home for her after our deaths but don’t know how to go about it. We like the look of places like Camphill and L’Arche but we are in Leicestershire and the local authority are not going to fund it.
Are we going to have to move to near one of those homes? Would that guarantee a place.?
Or are there decent places in Leicestershire? (But is it right that Leicestershire is one of the meanest local authorities for cutting social care?)
would any care home facilitate a transition by getting to know her and letting her spend time there before she has to move to them full time?
Our great worry is that the day I or my partner dies, the second of us to die, our daughter, distressed and bewildered, will be taken to some awful privately-owned profit-driven place where they won’t know her or be kind to her
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Roseannie
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social services have a booklet of all the homes but you would need an assessment for them to say what sort of home can meet your daughters needs. You can go out of county if your daughter requires that as there’s nothing locally that can meet her needs. My sons been in care for many years and he’s out of county as well, but thankfully not to far away. Care quality commission also rate homes as to how good or bad they are so check their site as well. My only advice is keep it as local as possible as you want to be able to pop in and make sure all is ok and I’m my sons deputy for property and finance and health and well-being. You might want to have her settled sooner rather than later so you can rest easy knowing she’s happy and settled rather than something happens and it’s all very stressful all round as that’s the last thing you want. I hope I haven’t spoken out of turn but this would be my advice. I wish you luck with what ever you decide.
Following any responses, this is a major concern for us too. We are in West Sussex and think that it’s not just Leicestershire. Options are not readily available or clearly explained it seems.
we are in West Sussex and I did all my own research. I googled supported living in West Sussex and Hampshire (we are on the border), found somewhere I thought suitable and then told social services that was where we wanted out son to live, it was a battle but as they had only suggested totally unsuitable placements we won in the end. Our son has been in his home for two years which is a 6 bed residential just over the border and is due to move into supported living run by the same company as soon as the building is finished.
I just wanted to send you a virtual ((hug)). I have no real advice but know I will be in this position in ten or fifteen years time and it’s breaking my heart. I sincerely hope you find the information you need. Do keep us updated on your progress I for one would benefit from hearing more about this. Wishing you the best of luck x
Yes you need to contact the Learning disabilities team in Social Services and ask for an assessment of her and your care needs. This can take some time due to the crisis in Social care, so I would contact them sooner rather than later. My son transitioned into supported living nearly 7 years ago, he is now 48 so I understand how you feel it’s not easy letting go. This is a better option dealing with it now rather than when it’s too late and not seeing her settled and hopefully happy. Once all your needs are assessed they will offer supported living choices which you will be able to visit, more than once if you need to. She should be able to go for tea visits and eventually sleep over to see how she feels about the place. You should not feel under pressure to accept the first place offered. As Jo Fisher has said if possible stay reasonably local so you can visit her when you want and keep an eye on things if need be. It will never be the same as home and there’s always something to sort out, but I know I couldn’t look after my son full time, I am 73 now. He still comes home every other weekend and I take him on holiday, so you can be involved as much as you want to. Good luck
My son has just moved, 3 weeks ago to a residential placement. We spent a year looking and visiting places. The local council have a placement team who put out an alert to all the care homes with available beds. In our case we wanted somewhere quite rural, that wasn’t too big (so upto 6 other residents) and had lots of outdoor space. They sent out a brief description of our son. When homes contacted them, they contacted us and I either ruled it out once I’d googled it or we arranged a visit. We eventually found a wonderful place not too far away. It’s rural, has a private beach, has lots of outdoor activities and opportunities locally. We visited, then they spent a day with my son at his college and did an assessment and offered him a place. Then the LA and the home did their part sorting out the funding. The weekly cost is eye watering, well over £5k so I was worried they would refuse funding but it was agreed. He seems to really enjoy being there and we’ve had lovely updates of days out and lots of photos. His life is very full and they can do so much more for him than we can at home where he gets very bored, very quickly. He’ll come home in October sometime for a week. We won’t visit him there as he just wouldn’t tolerate that but it’s a point I want to get to eventually.
My son went to a Camphill college and the first place we looked was at the Camphill homes but sadly none of them could meet his needs.
My advice would be to do it sooner rather than later so that you know she is settled and happy before you can no longer take care of her. The problem with looking now for later is that when the time comes there may not be an available bed, they can’t hold beds open obviously.
Some companies we looked at were Voyage Care, Home from Home care, Achieve together, Sequence care group and the Priory Group.
Hi Roseannie sorry to here that you are already thinking of what will happen to your beloved daughter after you pass. You didn't say how old your daughter is, and whether severe or moderate learning difficulties? as you may be better looking at getting health funding, which may give you more choice. Does your daughter have day care or short respite breaks which may help with transition to longer term care in the future?
Maybe start the process now when you are still fit and healthy, as you can take longer to see what is on offer. A different situation but our mam had alzheimers and my dad wanted to look after her at home with day care and home care provision. Sadly dad died suddenly in 2009 age 73 meaning we had to put mam into emergency care as my sisters/ brother had young families as did I and I also lived 200 miles from cumbria. Fortunately after 6 weeks a place was found at a local authority home round the corner from one of my sisters. She stayed there until she required nursing care in a care home. She died in 2013, but at least we were able to put everything in place ourselves whilst in our 40's.
Our daughter age 27 has just moved into supported living, and I am finding it hard to let go, as she has profound disabilities, and is non verbal. I think she may well be better in residential in the future as she lacks capacity, but we have time to make the change. I am 61 my husband age 58, and still working . By the way we are Leicestershire, and she has moved into a new build in the Glenfield area, which comprises of 12 individual flats offering 24/7 support. It is 20 minutes drive from our home. Care provided by Knighton Care services. Macintyre care also has homes in the area. Thera trust also might be worth a look.
Our social worker has been great for us and they have indicated that when the time is right for us and our daughter, maybe in a couple of years when she is 21, they will help us find somewhere appropriate, and they have in fact already made a few suggestions of places she could start attending as a day client, plus they are putting in place some supports that will get her more ready for independent living such as staying away two weekends per month and having a personal support worker work on independent living skills. Contacting your local learning disability team would be the first place I would start. Good luck, it's a heart wrenching process for us parents no matter how smooth!
my name is emlyn,im not a parent and i dont have severe learning disability but i do have classic autism (non verbal,but i have mild learning disability so i have a different style of autism in terms of comunication,i only began interacting as an adult) i have been threw the institutional,residential and LD hospital system since my 18th birthday and im now 38 in supported living.
do you know much about the camphill vilages? as in seen or visited them? if youve never seen them there was a docuentary made on one of theres from the early 2000s anoyingly called 'the strangest vilage in britain' and its based in the botton vilage in yorkshire,you can find the whole documentary on youtube if you put that title in. anyone can visit botton and go to the coffee shop and things like that and youd be helping people learn skills, as its somewhere id love to visit but being a active manual wheelchair user it woudnt be easy to get around.
the idea of these camphill places-at least with botton tend to be aimed at people with non complex mild or moderate learning disability because they woud be going to live with a host family who dont all have experiences of LD and showing it has its roots in oldskool instiuttionalism like what mary dendy did (my old learning disability hospital home is based on the site her comunity of learning disabled adultds was built to keep non disabled people having to see them)the person going there are kept in the vilage away from outside vilages,theyre expected to atend certin things like a workshop all day,a job of some sort and you woud be expected to get around independantly at least thats what the documentary showed (its twenty odd years old i think now which is why they used such a silly title for it) ,the camphill vilage in yorkshire is defintly not for people with physical disability as well or even just unsteadyness or mobility issues or things like dyspraxia as well as it has very un even ground and looks like a nightmare at winter-im sure i remember one of the women slipping i think on the ice in the tv show.
there is a waiting list for all the camphills as far as i lknow unless people are being sent to other places now due so just say your daughter managed to get a place at a camphill vilage and she loved the routines itd give her (its why i wanted to go there) i thikn youd be unlikely to get funding for it if its out of your borough as social services really do not like to fund out of area unless they find nothing else that they say is suitable (what they say though and what may work for your daughter can end up being two different things,just be very careful of them tryign to put her in a home ran by mainly agency or bank staff for example as both learning disabled people and learning disabled people with autism will really struggle with care staff always coming and going and it can have a big efect on behaviors and comunication,plus may afect her mood and mental health,and homes tend to use the cheapest agencies posible to fit care packages.
as for whether the home woud let her get used to it before being moved in, yes they do-every residential home and the supported living home im in now has done this with me,so i can get used to the enviroment, the staff, the service users and the daily routine or nightly routine there,but some homes have different plans to others,for example an old friend of mine who lived in a different residential home near me used to only get two hours of 1-1 support a day where she coud use this to go out and do stuff so you need to make sure your daughter gets enough time out if thats what she needs,itd need to be wrote into her care plan otherwise the home wont always listen.
if you find a certin residential home you like the look of, and there CQC results isnt perfect, it might not mean theyre not bad as my last residential home was unable to change anything like wall colours or furniture places because me and a couple of other people reacted badly to this. they put us before CQC visits,i think thats a sign of a good residential home.
ask parents at the home you go to visit-or residents if able, what they think of the place.
i woud have recomended specialist colleges like the david lewis centre in cheshire as unlike most they dont cut off support at 25, i only had to stop going as a day student because i moved a bit to far away and havent had enough driving support staff for my motability car for a long time.
What you worry about, is the nightmare of every parent of a child with disabilities. Particularly so when you have advocated for your child and still do. Our son has autism and moderate learning difficulties as well as complex medical conditions. He is currently living at home with us. I am 76 and my husband is 80. The problem is that our son does not fit the traditional model of care. He has had time in a flat with support since 2007. But he came home when the pandemic came along. He wants to live the mainstream life but he needs help in managing his money, his diet and his medical conditions. He’s too independent to meet the criteria for a care home but not independent enough to be able to manage on his own without any help at all. He is vulnerable. He works part time. I feel anxious every day about his future and am also struggling to work out how to settle him somewhere.
I know it’s hard but are you able to try the supported living route again with your son as it seems he lived like that for a long time? Our son is 25 and very vulnerable. Like many parents we give him considerable support even though he has 24/7 care in a supported living environment. We hope we have made the right decision and it seems to be going alright at the moment. It’s so hard to trust others to look after him “properly” but I know I have to do it for his sake. It helps me to know that other parents struggle with this issue as well but it also gives me strength to know that we have acted in our sons best interests - but it’s not easy. Good luck with whatever you decide to do.
Thank you to all the kind people who have replied to my post with support and useful information
Your advice helps us to see that this cannot in any way be left until the worst happens, and the selection of the right place and starting the process of acclimatisation have to be done sooner rather than later
I am glad to hear from those who have found the ‘right fit’. And on a practical level to hear that the local authority will give us information about all their homes/supported living and that those places will/should welcome exploratory visits. And it really matters that that the transition can be done very gradually indeed- she is such a little homebody she often tries to get out of her four hours a week Personal Care at the local college (the only support we have had since she left school-she’s now 26-only because we haven’t needed more). Maybe it’s knowing how resistant she’ll be that has made us keep putting off the biggest issue.
We probably don’t know enough about Camphill. We just liked the philosophy and had intended to try and visit one or two places this year, but I do understand that out-of-county placements will not be funded in the great majority of cases.
Her LD would be classed as severe so maybe Camphill wouldn’t be right for her anyway (she’s non-verbal with poor fine motor skills though understands most of what’s said to her and can walk)
I remember a fuss about Botton some years ago which I think led to a split in the Camphill organisation. Something about how far able bodied people could integrate with the LD people under charity rules
It’s a good point that high turnover of agency/bank staff is unhelpful to say the least, but I don’t know how one could check for that specifically. Maybe just asking residents or parents of residents if we’re able to. It’s nice to hear some names of organisations to start looking at.
Thanks again for your good wishes and advice which have helped set us on the right track
my son’s care package at his new place is so expensive as they’ve had to factor in the use of agency staff. However this place has a bank of regular agency staff that they use and they personally train them so basically they are like their own staff.
What a terrible place to be. I can recommend Cream Care in Somerset. We came from Hertfordshire, I just told the LA I was moving to the southwest and they agreed to fund my boy. Anyway it was cheaper than him staying in county which I am sure helped. You can move out of county. Good luck!
Hi , I am in the same scary position looking for an placement for my adult son who is 38yrs old . We live in south Essex , My son needs a residential placement which a social worker who visited for a financial assessment said he would not get as its too expensive , I do know someone whos has a son with down syndrome who' s residential home cost ,£6000 per week . My son although not downs has very similar disabilities and behaviour problems. It sounds horrendous but I have worked it out at about £35 per hour for 24/7 care ..
The only time I ever hear from SS, is for a financial assessment as he recieves a small allowance for respite care . the assesors do not live in or near our county,
I will fight for him as I have always done to get whats right for him when I find a suitable place , if anyone knows of placements in our part of the country it would be really welcome , ,
The Panorama programme this week about a care facility has really worried me , The way the mentaly ill and autistic residents were treated was scandalous and lessons have not been learned since Winterborne a few years ago .
I am getting older and I know I have to find a place for my son so any recommendations would be very helpful .
Good luck Roseannie and I hope you find the best placement for your daughter .
Always feel the same about the social workers, all to try and save money and no help given at all. The support plan for my son is useless and I've only just realised how important it is because of the finance team want to cross every t and dot every i. I am doing all the admin for his self directed support and they want contributions! This is not what I signed up for when we were sold the scheme by the council in 2010. Those residential homes are very scary aren't they. Even if people have had something good there's no lifetime guarantee.
Hi Roseannie, have you ever thought of self videoing your day to day interactions with Daughter & how you are caring for her, meeting her needs etc. You could then Date it & Label 🏷 Daughters Name & Daily Care Needs. Then you can leave it in your Will that gets Read out, or Solicitor or something. I'm thinking about these things too, Just a thought possibly 🤔
That’s a good idea. A video is more effective than writing or explaining it
I hoped that we would find somewhere that would allow a transition over years so they would get to know her themselves, but maybe that will be even more difficult than I thought - when I phoned adult social care a few times there was a recorded message saying that they are taking emergency calls only!!! Seems to be a real crisis of underfunding.
Yes there certainly is in underfunding & staff leaving, & new starting, whilst big overall of Certified staffing now & sorting better Pay for nhs staff. Did you see the latest info on LDT Web site (Learning Disability Today) ? It's all on there, take a look.
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