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

Dear Kate
I cannot help you at all , just wanted to say how much I feel for you in the very difficult situation you find yourself in.
I hope you find somewhere very suitable and special for your son.

I havent been through this but I work with children with learning disabilities and have been involved with many transitions to adult care.
There are obvious steps like regular visits, photos of his new carers, etc although I understand visits may be difficult in the current circumstances. A good home will let you do the transition at your pace. For many of the young people I worked with it helped to have their 'old staff' spend time in the new environment. Sorry if I am teaching you to suck eggs so to speak. It also helped the young people I worked with to have access to whatever is their stress reliever, e.g regular trips to their favourite place, so that their old routine is mirrored in the new place. I hope it goes well for you and your son

I ran learning disability services and residential home /short break Unit before I retired Kate54 I'm not sure what is allowed under the current restrictions but I'm sure your son will have a named worker who you can liaise with. Keep things as low key as possible, make sure he has his favourite things to take with him. Normally parents/carers would spend time settling in their family member, having meals together etc and gradually reduce the time spent in the new home.
I understand completely how you feel and in my experience the new resident settled in much more quickly than the family expected. If your son has complex needs make sure all the details are given to the staff. I hope your son settles in well Kate54 and you can feel comfortable about his new home.

Thanks all and Annsixty for empathising. The new place has been found. Complex needs indeed but we are confident that , on paper at least, they’re up to it! Covid has caused a few difficulties - namely that although we’ve been to the offices, we haven’t seen the residential side except by video tour. Making the decision was the hard bit.

I know this is counterintuitive but with adults with autism we found it much less stressful to just move. A prolonged transition with eg tea visits then an overnight one and gradual transition of belongings can really exacerbate anxieties. I have to say that we initially found this out after an emergency move and the individual was absolutely fine (to our amazement). He had left behind various rituals and worries and did well. After that we used this method with other individuals. More cognitively able adults explained that a prolonged transition was stressful, they didn't know quite where they were etc.
Good luck. Structure, predictability,calm and enlightened (ie well trained) carers are the watchwords.

Absolutely Jane10 , these have been our thoughts, with the well-trained and prepared carers being the most important thing. Our son has always surprised us in certain situations which we were dreading e.g. getting caught in a terrible thunderstorm when out walking as a family.......he absolutely loved it. But that was a longtime ago.....

No experience myself but I know people who’ve found it very helpful to use social stories to prepare their special needs children for upcoming changes.

I don’t suppose there’s one method that works for everyone.

Where there is a willing and capable parent to provide care too an autistic young adult, and the parent is young enough that they don't have to consider where their child would go should they pass away, could someone please tell me the reasons for choosing a care home? Are there social advantages? Is it a way for the AC to have some sense of independence? I know that autism manifests in all kinds of ways so they are all different. I know some will never need any kind of care and can be independent, while others never will be fully. This question for personal reasons and it would be very helpful to hear any input. Response by PM is welcome.

PS - I know even if we're young we need to make guardianship plans and have done that, because life is unpredictable.

Depends how young and fit the parents are. Sadly I've seen too many adults with autism catapulted into care after the parent suddenly cannot longer cope (for a variety of reasons eg broken hip, long term serious illness) or dies. I've always found that planned admissions are much better all round especially when the parent is still able to be involved in the selection of a place and briefing of the staff. It's nicer for the individual too. Parental visits or visits home and joint holidays etc can be factored in and parents minds can be put at ease that their adult child will be OK when they are no longer around.
Sudden crisis care should be avoided if at all possible.

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.

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

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 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.

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.

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.

Hear, hear!

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.

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.

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

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.

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

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.

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?