My young adult son requires 24 hour supervision and support to keep safe and needs a lot of personal space and has unintentionally self-harming behaviours but he does not pose a risk to others. He cannot manage in a 'family' type situation and needs a team of people around him and structured routines particularly around mealtimes and bedtimes and to allow him to get exercise and be active in nature and in the Community.
Unfortunately, social care funding has been cut, hitting carehomes particularly hard. There is no security of tenure: Homes are run by private chains who sell assets when it pleases them. Meanwhile the last stop solution, numbers of ATCs rise. He has already had to leave an ASD specialist home which was sold off, this seems to be a common story.
To give him security and a full and meaningful life after my death, I would like to set up an organic farm run on circular economy principles to provide care, accommodation and employment for adults with different levels of learning disability, either in the UK or in France where land is cheaper. This would allow him to be part of a Community. Social services and Council are aware of me.
This mixed ability model where the more able found reward in helping the less able, and all have the pleasure of being part of a community, still exists abroad and used to exist in Britain. However, it was undermined over the last 20 years with cuts to social service coupled with rhetoric of 'independence' and evictions of people with with moderate learning difficulties from carehomes that included farming, as they were supposedly not being adequately 'indepedent'. In the South the cost of land made selling off larger medical and social care facilities highly lucrative for the owners. This is still the case.
Unusually, I have a Court Order which allows me to make best interest decisions on behalf of my son who has lacked capacity since birth. I would really like help and advice from others who might share my vision and those who have relatives with whom he could live.
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EmpathyandLove
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Hi it sounds a Lovely idea I hope you are ably to fulfil your dream and your sons. I would be interested to learn more my son sounds very similar. He’s in care and has been since he was five firstly at a special school until he was 25 and then to a dreadful place it took two extremely stressful years to get him out and he’s now in a much better place. I have a friend I know who has a son with Down’s syndrome and she’s done something similar but possible on a smaller scale. Maybe it would help to speak to her I don’t know just an ideA
Thank you for replying Jo. It would be great to get the help and advice of your friend. Really glad that you were able to get your son to a good place. It sounds like they may be the same age. My son is 27. Hope to hear from you again.
My sons 29 he went to young Epilepsy until he was moved to a place in Harlow and is now in caterham Surrey. I will contact the lady I mentioned and see if I can connect both of you do you have a number or email you could pm me. Or how would I connect you two
hi EmpathyandLove i like your username i wish more of the world followed that thinking.
i woud love to live on your idea of a farm ,but id had to upgrade to a off road powerchair now sadly.
im just going to say a bit on how its always gone wrong for me apart from in one service which i do say in this list.just to warn you i write a lot as i have no short term memory so i forget where i am with every sentance and it can end up long,sorry!
i am 38 and although different im very very similar to your son in a lot of ways,i have extremely complex autistic needs and difficulties and apart from one place ive never been found a place that truly suited my needs and difficulties, i am diagnosed severely classic autistic (since very early childhood,plus im still non verbal) but i have mild learning disability-not severe or profound so this means i am better able to understand the world than say my uncle william-who has PMLD.
im quite severely epielptic since 2 and a half-every day i have at least one (usualy 2-3) big grand mal seizures depending on stress levels but each seizure destroys me physicaly,i also have had no short term memory at all since 5/6 as constant status seizures damaged that part of my brain . im spinal damaged and a wheelchair user due to having been restrained so much in a learning disability hospital.i was supported 2-1 day and night until a few years ago,now im mostly 1-1 day and night.i have a rescued pet cat called mr shadow who has a disability himself, a beautiful rescued rabbit called luna (she came from the same sanctuary as mr shadow) and two big chubby upside down cat fish in a 400 litre tank,with two eheim pro external filters and UV bulbs connected to the pipes,my dad looks after this for me.
the service i lived in,the one before my last was a small organisation,i loved it and will never forget it even though i got kicked out for my behaviors being to complex and challenging,i loved the owner of it and the managers (bar one)and all the staff and the service users.the staff had said in front of me often its such a low turnover of staff as the management give good pay and look after the staff.
at the same time though i was being groomed then badly cyber bullied by a pyschopath and narc (she used multiple acounts to target me) followed me to a lot of support sites and in front of me (i just thought she was a lot very much like me,as that is what grooming is ive been told) she woud copy and paste my words as hers to use it for atention which made me feel sick as i had by one person online and it went on every day for over 2 yrs as i coudnt communicate what was happening.....
....a lot of what she said i coudnt write here as it was very dangerous and abusive it coud trigger other peopel... but my behaviors got so extreme they coudnt cope with having me any longer. i saw a manager in the shop and she deserved an awawitrd for putting up h me and the amount of work she does for other people-she did amazing things for other peopel.i dont do hugs but i gave her the biggest hug in the shop,i miss her so much as she had made a big impact on me.
-it was a residential centre and designed for children,teens and adults with both complex autism and learning disability,they were the best and most supportive for my needs but i ended up sectioned in a learning disability hospital,i lost my pet chickens-(i was taught over a year how to develop them using makaton and PECS) and i lost my beautiful cat and my life.
we had a farm that gave me a routine,plus a home for my chickens and my beautiful ex house cats lottie (who we had rescued from a couple posting on preloved that they was about to dump her and go to australia the next day if no one took her) and ex house cat princess (shes still living today,shes very old now though ive been sent a photo of her,poor lottie was wrongly being fed by a neighbour across the road and lottie had gone over and got hit by a car).
they had whats called an IP camera hooked up in one of the barns where they kept the miniture donkeys and shetland ponies at night and lottie slept in it every night when she waas alive, and we were all given the password so we coud watch them it was cool.
the residential home after that one,there were some staff there who regulary gave me canabis too stop my behaviors that day and make life easier for the staff.
even though it was a residential service for adults over 30 with severe classic autism and/or learning disability, a kid (almost reaching the start of adulthood) was moved in and me and my best mate who also lived there were not given any say-he had what was then classed as aspergers/mild autism without learning disability, and pyschopathy,he had tried to kill his family several times. he didnt fit in with those ohe acted like he was better than me and my best friend (who had severe LD and a physical disability),he had massive control over the place and his mum used to get all the rubbish out of his bedroom and plonk it outside the staff office where his staff were usualy and she woud say to them 'get rid of it' - i saw him get tazered when he tried to punch a cop once which left me and my best friend in a meltdown.
....and yet i had a meltdown in my room and got restrained once in there by police as my own two staff coudnt manage it so it all, i overheard him say to his mum 'im getting him out of here' and she was just as bad as him,both of them not only lost me my home,i wasnt able to go near the street or area ever-even though i hadnt been given an ASBO so it was ilegal. they kept telling the respite where i was being kept i had to come collect my precribed wheelchair otherwise theyre going to give it back to the Nhs-i wasnt able to come near the area so how coud i pick up my much needed chair,not only that, i had two rabbits and fish there so how was i to feed and look after them with my dad? i wasnt allowed and if it wasnt for my dad going all that way the poor guys woud have starved to death.
other terible stuff happened there.
so,up till right now-instead of finding me the most suitable place,they chose to instead home me in a supported living service (a service which isnt suitable for my needs but was the only place that woud take my pet cat,fish and two rabbits at the time).ive been waiting over two years to move.im heavily medicated on PRNs and anti pyschotics (years ago i went to 25 stone on a lowish dose of respiridone,so ive been swapped to different ones for severe challenging behavior and the least weight gaining one for me has been aripiprizole.)
so the things ive learned from my experiences, have been dont stay in residential care as it takes away the care part of your DLA/PIP and you only get alowed a small amount of money every week,if you have very complex needs like me,i need alot of person centred planning.
i woud love so much to live on/around/in a farm type place so if you need any ideas from a service user view please feel free to ask me.
That was very interesting reading. it appears there are a lot of people/ families going through a very similar situation to what you have written.
My son is coming up 34 has complex autism and L.D, he still lives at home with the family. I cannot see him in any other living accommodation or residential placement .
What you have just written has made me open my eyes even further and it is getting so scary for us especially while we are trying to make plans for his future.
Well done and thank you for writing your piece, many people will benefit from reading it.
Dear Lucacielle, Friends of mine who own their own home and have carers coming in to help with their son, plan to leave the house to him on their death and continue to have the same carers coming in, so might this be a solution for you, too?
We have 2 young adult sons and feel the same as you. Even trying to make the Wills & Trusts makes me feel no easier. The Letter of Wishes are only there if someone will help follow those wishes. So feel the Will is just for finances and the house etc. It is a scary situation that there will be no one to love and care as much as we do. xxxx
That is true. However, having a good selection of trustees and a detailed letter of wishes can only help.It is true, no-one can love and care for them the same as we do. But, we have to trust that some will try their best to be there for our young people when we are gone.
Hi my friends and I ( all parents with Autistic/LD sons and daughters) started a Charity some years ago with a similar ideaOver the years we were advised that SS don’t really support this model anymore. We followed the advice to go down the supported living route. SS were very supportive. Our project is finished we built a house for 3 people to share , and 2 x1 bed self contained flats. My son needs 24 hour care.
Sadly these were ready for tenants in Jan this year, but for some reason no prospective tenants seem to be coming forward.
I suspect the individual Care Managers are not informing people who maybe interested as they have no money to fund the tenants.
I can’t get any answers. So I would say good luck with your idea but unless interested people can find they’re children to live there you will still need SS support.
The property is just outside Guildford Surrey. My son will live in the house so 2 more available places. It’s a spacious house each tenant has an en-suite bathroom. Then the self contained flats are available.
Are you towards the Hampshire border? We're in Kent so a bit far from us at the moment but we will be heading west in the coming years to be nearer elderly parents so I will make a note if thats ok as it sounds like the sort of set up we would be looking for.
Dear Timmy, Thank you so much for replying with this warning.
My son really needs a solution that will last and be sustainable. Please can you help me by explaining why the Charity wasn't able to keep going? Was it because it couldn't call itself 'supported living'?
Maybe if we can tick the 'supported living' box it would be ok?
Is the Farm still there?
My son like yours needs 24 hour support. He also needs an ensuite.
Hi not sure if you’ve miss read/ understood my reply. The Charity is still going but we decided we didn’t want any involvement when the project is up and running. We had been advised for it to be supported living as the residents have a secure tenancy and that is seen to be safer for the residents.The house and flats are ready for tenants but so far SS have not found tenants,lt is definitely classed as Supported Living.
It sounds wonderful. My son is 23. He’s moving to a new placement on the Isle of Wight in a few weeks (he’s been at a residential college for the last 3 years on a 38 week placement). We chose the setting as it’s very rural , close to the beach and a community type environment, very safe and 1:1 support at all times. Also it’s residential care, not supported living as I didn’t want the hassle of tenancy agreements and sharing bills etc. The weekly fees are astronomical (around £6k per week). and I was worried funding would be denied but it’s all gone through panel now so I’m happy. We thought about doing something ourselves but after owning and running several residential care homes for over 30 years the red tape and legislation would put me off doing it again. It does sound amazing though!
Sounds lovely. We won’t be involved with running our project , there will be a separate care provider and a specialist landlord who sorts the tenancies etc. Our Charity only wanted to provide the accommodation not be involved in running it.
Yes. We won’t consider supported living for our son after a very bad experience with my severely autistic nephew. Firstly my sister In Law has to all the admin, paying his share of the bills etc every month as he can’t do that and then after a few behaviour incidents thet gave him 48 hours notice and didn’t even inform my sister in law, they wrote to him but he wouldn’t understand that. It’s been a nightmare so I discounted all supported living placements that were sent to us and only looked at residential care.
LA’s like an easier life! It’s like the big push to give parents direct payments. Finding and paying staff falls to the parent and all the admin that sorting PAYE entails. I just want a quiet life now with someone else having some responsibility.
Dear BenjiBCongratulations on finding a suitable residential place for your son and getting the funding he needs. That is wonderful. I really hope it works out long-term, too.
It may be that Social Services are not telling people about your service. In my experience they don’t. I wanted a relative who I had become responsible for after the death of her mother moved closer to me. Having agreed it was the right thing to do the part of Soc services tasked with finding that accommodation appeared to do nothing. I had to keep chasing the Soc worker who in the end sorted it out herself, but I had had to look up local providers and suggest them to her. Is your property listed on any of the care websites? So that anyone looking can find you.
You could ask your local paper, free magazine to do a piece on you so that people would then know that you are there.
Sounds very interesting, my daughter is more independent but needs some kind of community. I work in developing intergenerational solutions for the council I have been wondering about collaborating with other families.
We are in a similar situation and would like to buy a small property for our son. Does anyone know how to find a specialist agency/housing association to manage the tenancy? We have been told that it is necessary to lease any property to a housing association in order for the tenant(s) to be eligible for Housing Benefit, which no one has mentioned in any of these posts. We live in Ilkley in West Yorkshire.
Our son is also more independent so a self contained flat within some kind of community would be ideal, but all we have in our area is shared supported living. He is in a small annexe at the moment, but it not suitable long term as there are maintenance issues which are not going to be easily resolvable. The council have commissioned suitable schemes in recent years but not where he lives and he does not want to move area. The new schemes are located where property is reasonably priced, understandably I suppose. Our only option seems to be to buy a small property if we can find something which meets his needs and set up an arrangement to lease it to a housing association and he would be a tenant.
Is this similar to shared ownership? I'm in the West Midlands and looking around for a relative looking to move from residential setting. Following this post and appreciate any recommended providers.
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