Moving an adult with a severe learning disability to a new placement - any advice?

I am so sorry, Kate54. That must have been a terrible shock to you all.

Kate I am so very sorry for your son, you and all the family.

It is a very difficult path and you are constantly between a rock and a hard place.

Would you kindly PM the locations you son was please. It is so very difficult to find locations that meet needs. The location may be the best there is but not as you expect from the packaging.

Many thanks.

Kate54 I only read this whole post today and did not realise until your update that it was an old post. Please accept condolences on the death of your son and sympathy with the additional trauma of a police investigation and lack of full inquest. Keep strong and positive. It is so sad.

So sorry for your loss

So sorry to hear about the sad demise of your son.

I'm very sorry to hear about what happened to your dear son. Life is so hard. I can only hope that good quality care of learning disabled people improves a lot - and soon.

Oh Katie - so sorry to read your update.

So sorry to read your update Kate54. I didn’t notice that your OP was a couple of years old.

May your son truly rest in peace now and that you are coping.

Thank you for those responses which are most appreciated. We are OK but there may be some unwelcome publicity which will stir up all the dread once more.

I don’t know what prompted me to read this thread today and admit I had no recollection of it or posting on it.
I just want to express very sincere condolences to you on what must have been a traumatic experience for you which seems to be ongoing.
You went through a terrible time after seemingly making the right decision.
I hope you get some answers which will help you deal with it.

I'm so sorry Kate54 what a tragedy for your son and for all of you.
I agree the whole industry needs an overhaul and more monitoring. The CQC are doing a poor job.
When Local Authorities ran services there was much more accountability and training for the staff etc. Now profit comes before everything.

My condolences to you at what must be such a difficult time.

Oh goodness, I’ve had a PM today from someone looking for advice and I thought I needed to update this thread (which, I confess) I’d forgotten about.
The very, very sad outcome is that our son did move but the placement was not what it promised to be.
We were on the point of organising another move but tragically, in January 2022, our son died at the home. I won’t go into details but there has been a police investigation and there is still a small possibility of a court case. Hence no inquest yet and it’s been 18 months.
As you can imagine, this has been a devastating time. There are, of course, exemplary care homes but generally the industry needs a major overhaul. Not many votes in it, though, are there?

Kate54. We know a man who sounds very much like your son, Really big, strong, needs 24/7 support, can do very little for himself etc.

His parents are both surgeons in London and several years ago bought a house up here for him to live in. He has a team of carers living with him and his Mum organises all this, pays his bills, arranges appointments, etc. his parents do come and visit every now and then but it is now his permanent home.
Obviously they are big earners and can afford to do this and so, for them and their son, it works.

I do hope you all get sorted soon.

Good morning,
I’ve found this conversation thread and am interested to know how things turned out for everyone.
Thank you.

I also have a 24 year old son that I am watching with complex needs. I take care of him 24/7.

My comment may not be helpful at all but I wanted to share it.

I understand completely Kate 54 I have a 36 yr old with severe learning disabilities very little speech and challenging behaviour,he needs support in every aspect of his life , metal age of 2/3 year old . he still lives at home with me , his dad sadly passed away on new years eve 3 years ago so I have been careing for him alone now , I agree the sanitized look of LD on tv with High functioning people finds me shouting at the tv that they are all not like that ? Very wierd I know but frustrations with it all takes its toll , I realise during the pandemic that I need my sons future to be secure but moving him to be cared for by others frietens the life out of me , Im 67 , not in to much bad health and careing for him 24/7 since last march when his daycare closed , I had a few phone calls from carers at the beginning of the pandemic
and one from a social worker that I have never met, I havnt heard from anyone since, I need to sort something out for him after we get back to some sort of normality , hope this is continuing the thread I'm not really tech savvy , sorry if it's wrong just wanted to show some empathy

Kate54/Jane10. Thanks for you responses. I am aware of the wide range of autistic presentation and do understand home care can be impossible. I received your PM Kate54 and will respond soon. I suggested PM as I didn't want to distract from your thread. :-) I'll respond more in a PM.

V3ra

OceanMama would your family member benefit from an occasional respite stay somewhere, just like going on holiday? That might be something to consider.

At this stage, no. Maybe in the future. We are working on things.

Hear, hear!

You are quite right Kate54. This is the sort of LD/ASD that people don't know about. Additionally, for example, a non toilet trained 6 year old is very different from an incontinent 46 year old with an elderly parent having to cope. I have seen parents badly injured in the past. Frightened, large adults with LD/ASD can lash out and some definitely need very special placements indeed!
Finding and sourcing funding for good long term care can be extremely difficult. Siblings soon have their own lives and differing responsibilities and can't necessarily be relied upon to take on the burden of such a complex and challenging individual nor is it really fair to expect it. These adult children can grow more challenging as the years pass and in different ways.
Sounds like Oceanmama's child is much younger and the prospect of his/her moving out seems remote but should certainly be considered - plans A, B, and C drawn up.

PM sent to oceanmama and many thanks Jane10 and Elizabeth1 for your input. Twelve week plan already in place, very impressive approach by new provider. The only problem at the moment is they haven’t actually met our son due to lockdown, different tiers etc. But it will happen.

Oceanmama I could spend an hour or two describing the last 30 years in my family to you but you’d get too depressed! As those who’ve responded here who have experience working with severe learning disability will know, what we’re talking about here is the other end of the autism spectrum from Asperger’s, the end which most people know nothing about and in many ways I wish I didn’t.
Suffice to say that if we had been able to, of course we would have kept our son at home (until adulthood anyway) but his behaviour was so challenging, and our family life was so threatened (mentally and physically) that residential care was the only option for us and at a very young age. It will probably shock you to know that he went to a specialist boarding school when he was just five. We are lucky our marriage is still intact. Most do not survive this kind of onslaught. And if you’re still wondering how a five year could cause that kind of impact, I still have flashbacks of the time he tipped over a heavy dining room table, narrowly missing his toddler brother.....and many , many other examples.
Develomentally, he can’t or won’t feed himself, is not able to use the lavatory (so still in pads) or dress or wash himself.
As I said, this is an area of disability which doesn’t get much coverage. The Covid restrictions around care homes for the elderly apply to these homes, too, by the way so we haven’t been inside it since March.
I do get rather fed up with the ‘sanitised’ view of learning disability as seen in The Rainman, ‘The A word ‘ on TV. Sadly, it’s not all about high functioning people with Down’s Syndrome, If only it were.
On a more positive note, we’re hoping that the new home, with a highly experienced on site team of occupational therapists and so on will give his life new meaning.

Kate54youcould say I’ve loads of experience after working 18 years in this field however only from the other side of the coin if you know what I mean. It is a courageous move but you must have good reason for considering this and like Jane10 says a planned admission is best try and do this with lots of likes and dislikes written in your sons Care plan I would want to speak regularly with the named keyworker who ultimately will be working closely with your son. This relationship I’ve observed will grow and grow. I always found keyworkers who have special responsibilities worked effortlessly to ensure their named person ie (your son)experiences the very best of what is available and within range between you you must write in the care plan-the tiniest of details in the care plan and update routinelyreview at least monthly.good luck pm me if you’re needing to know anymore

OceanMama would your family member benefit from an occasional respite stay somewhere, just like going on holiday? That might be something to consider.

Crisis care, we have a sibling that would look after my family member. I'm still under 50, and both parents are still around and fit, so hopefully one or other will be able to care for them until they are able to manage some independence. My hope is that they can become independent. If not, that they can become independent enough that that, and their inheritance, will be enough to sustain them. They are still young enough that it would be normal for them to be living at home too. At this stage it is just thinking forward, but also a question of whether there are advantages they might gain from a group home situation. Should they express a wish to leave home, it's one option we could look at. I can't see that happening for a while yet though. I just hope I live with good health for another few decades yet.