Hi everyone,
Long time member here but very infrequent poster these days. Haven’t used the new forum before so hopefully I’m doing this right!
I just have a question about the sort of care offered to adults with learning disability and it being appropriate?
My son is almost 21 - intellectual disability, autism, epilepsy, a couple of sensory disorders, fluctuating mobility issues and chronic fatigue. Despite the long list of health problems he is a healthy, happy sociable chap but …he achieves that by spending a lot of time alone and limiting the sort of activities he does. That includes getting to and from a place - the bus will tire him out in a way the car won’t, for example, avoiding bad weather (heavy rain really tires him out) and sticking to people/places that he knows, to name but a few. He has a social club he goes to twice a week which he loves and they do additional days out/evening events and he’s really happy with that. He also enjoys fairly solitary things like swimming and the cinema, but his absolute happy place is in his room, on his own with his games consoles and books etc.
We moved from England to Scotland last year and until now everything has gone really well. The social worker is nice but I feel I’ve hit a brick wall with regard to carers. Everything, it seems, has to focus on him becoming more independent so they are really pushing for him to use the bus more and to have people take him out more often and do ‘activities’ with him at home. Too much activity/sensory overload will actually make him less independent, because his system shuts down and then he struggles to do basic things like getting himself dressed and sorting himself out a snack, which are things he can usually do without much help. We’ve had lengthy periods in the past where he won’t leave the house/his room/speak to anybody/get dressed, a long list, and it’s because he gets overwhelmed and he just can’t cope. Ideally what we need is someone that will just sit and do nothing which seems to go against what social services expect! But for care to be helpful it would really be easiest to have someone/a few people that can just be here (he can’t be left safely on his own for long periods) in case there’s an emergency of some kind, or to sometimes take him out when he’s up to it and wants to. I work on his personal/self care skills with him most days and he’s getting the hang of some basic dishes, telling the time is coming along, we work on money stuff (still quite basic but he’s getting there) so really what we do works for us, I would just like other people to sit with him sometimes, ideally so that I can go back to paid work at some point but for now just to be able to go for a walk or book an appointment when it suits me would be a big help.
Sorry, it’s a bit long but it’s hard to explain without a bit of background information. I’ve explained all of this to the social worker but it seems ‘just sitting at home’ doesn’t have a box that can be ticked so I’m feeling a bit stuck. Is there any legislation or procedural something that I could use/refer to so that we can get what we need rather than having to say no thanks because what they’re offering won’t help? I’ve requested a personal budget so it would be us picking the carers but what they do still has to meet what’s in his care plan, which is very focused on him doing more on his own. But he’s not ready for a lot of things and pushing him will make him shut down so I want to avoid it. Can anyone point me in the right direction? I’m so frazzled I’ve not got the energy to wade through endless documents online anymore. Thank you.
Hello. The Selfish Pig’s Caring Handbook is a good book in order to start with. Based on your post I think that a full care needs assessment is the first step. Get as much detail as you can possibly. Make some brief summary notes on care companies and local care homes. Instead of hiring live out carers, you can alternatively find a live in carer or a personal assistant. Pay very close and careful attention to your gut.
Part Two
Perhaps speak to a career advisor on his behalf in order to see what they can do. Make brief summary notes. Good luck. The national career advice service site is a very good starting point. Give them a call. Alternatively hunt for a few different useful books on finding some type of meaningful work. Explore all the career options. There are tons of good careers out there. Most companies are hiring these days. Look for vacancies in a local newspaper, online or in industry specific magazines.
Hi Mumwhocares, welcome back. Gosh he is nearly 21!
S finds public transport too much too - the waiting, sensory overload so totally get this.
Random suggestions:
Would it be more realistic for your son to learn to use a taxi?
Surely his goals should be set with him not for him?
The goals need to be worded do there is room for interpretation.
Does he have road safety etc? This could be worked on whilst on walks.
It sounds more like you want a sitter for him.
Make a list of goals for them in order to work on with him each month. Have a list and keep it in a drawer to refer back to from time to time. Good luck.
Hello both, thank you and sorry for the delay in replying - I seem to get ten minutes to do something and then no time to get back to it again!
Thank you, Thara, he’s had/is having a full needs assessment now. The problem is (and always seems to be) the local authority ‘this is what they ought to be doing’ rather than dealing with the reality and accepting that (a) some things might just never be possible and (b) you have to juggle all the different things he needs to be doing alongside the things he wants to do and also give him the opportunity just to have a lazy day and do nothing (which we all need! Although I’m sure a lot of us don’t get that 
). I’ll have a look at that book you mention, thank you. I did find some legislation/guidance online and, as you’d expect, it’s all very person centred and about what they want and need, rather than what the local authority want and need so I don’t know what she’s waffling on about. They ought to print all of this stuff on blocks of stone so we can just whack people with it, it would be more useful Thank you.
It’s nice to see you, Melly! I wasn’t sure if you’d still be here, yes, 21 next week, unbelievable. You’re right, it is more of a sitting service just now. I’d just like to be able to get out a couple of evenings a week to an exercise class or something, just something that involves moving around a bit and some interaction with humans! And as it would be evening it would just be someone sitting here as he’d have done his day and evening is his relaxation time. Taxis would be a good idea for him; he can do the bus but you have to factor it in as an activity in its own right and take into account the effect it will have on his tiredness levels - which in turn will impact on everything else he’s doing. Getting there is one of those things that makes more sense to do as easily as possible as often as possible but they all seem to be convinced that sitting on buses a lot is a sign of independence when for us it’s just a more stressful and time consuming way of getting where we need to go (and who needs more stress and less time? Lol). I hope you’re well, how’s S doing? xx
This is a list of things to discuss
Eating and drinking skills
Mobility aids
Respite care
Moving and handling techniques and methods
Goals
Toileting
Home help and support
Adaptations
Conflict management training
Experience levels
How to find a care company
Sources of information
Benefits and finances
Any other concerns and worries
Hi @MumWhoCares … yes I’m still here! 21 wow. S is 31 now, scary stuff.
I totally understand your need for a bit of freedom. As those we know with teen and adult children gain their freedom, we seem to have even less than the minuscule bit we had before. If you had direct payments, would you be able to find someone to provide a sitting service and then maybe have a short token ‘developing independence’ session once a week/month or whatever with a clear objective to satisfy the person setting up the funding.
I totally agree re the public transport issue. I have to battle with S’s college day service that a group outing on public transport to a busy place for a day out and then public transport back again is too much for him. They try and sell it as travel training … well S can’t cross a road without a pedestrian crossing yet - so I don’t think he is ready to learn ‘travel training’ by bus/train yet and travel training isn’t a group activity. Others in the group may love going by bus/train but for S its sensory overload and leads to exhaustion.
At the moment I’m struggling to get them to accept his autism needs and to meet them … which means he is permanently exhausted and so am I as he is harder to support at home when he is stuck in a downward spiral of stress and anxiety due to be so wired that he can’t relax …
Hello @MumWhoCares
Nice to see you back! As you know my circumstances are different to yours. So difficult to advise. I know you definitely are as your title says.
Really just wanted to welcome you back
Good luck. Keep us updated. You are in my prayers.
Hi Melly, sorry for the delay - we had 21st birthday celebrations which were really lovely and I’m only catching up on everything else now. And I lost the knack of the new forum as well so was hunting around trying to find the last post lol. Yes I completely understand what you mean about S getting exhausted and how that impacts on you. It’s exactly the same here, it’s so important to balance his activities with resting time and I do look for ways to avoid using energy if we don’t need to. I don’t understand why professionals don’t understand that, it seems really basic to me?
Anyway - yes, a sitting service would work and there are lots of agencies locally with good reputations and it would really be just sitting on the sofa and haul him out if the house catches fire to start off with! The short sessions are a good idea, he could do an afternoon once a month of batch cooking and stock up the freezer with some of his favourites. We’ve got simple recipes of things he really likes like lasagne and cookies, he does need a lot of help but that would be a good activity and would be of practical help to me as well which would be good. I bought him a really good book called ‘Living Your Best Life’ which is for adults with learning disabilities and it’s all about managing your emotions, figuring out what you want and just general life skills. That would be good for someone to spend an afternoon working with him on, just going through it and doing some of the exercises. I feel that social services always want to use a sledgehammer to crack a nut. He’s so happy at the minute, really enjoying his groups, he’s up for other people getting involved and he’s coping really well so I want it to stay like that. He’ll shut down and refuse to see anyone if it all gets too much and that’s the bit they never seem to understand. I hope S is doing alright, it’s very hard keeping a bit of yourself going while you’re trying to meet their needs xx
Hello Pet! It’s nice to see you I hope you’re doing okay, I need to read through on the forum and catch up on people’s circumstances a bit. Yes, different circumstances although I think a lot of us experience similar battles with the authorities. It’s a shame, I don’t really understand why it has to be so difficult all the time. It’s lovely to see you anyway, I hope you’re well xx
Thank you, thara, that’s very kind of you and much appreciated xx