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
Hi everyone, just checking in with a little update
We have got the ball rolling with the Guardianship order. We’re living in Scotland now so I don’t know if the process is the same in England as well but so far it’s relatively straightforward - we qualify for legal aid so really it’s solicitors filling in forms, I’ve had to provide a bit of paperwork and sign a couple of things but of everything we’ve done it’s definitely been the easiest bit. However, due to delays and backlogs it’s likely to take a year to go through so I contacted the social worker re support in the interim. She was quite vague and evasive in her responses which made me a bit suspicious so I asked her to send me a copy of his care plan - he doesn’t have one. I then asked for a copy of his needs assessment which she eventually sent me after stalling several times. You will all be pleased to know that he’s cured Most of his disabilities have magically disappeared and he just needs a buddy for social activities. He’s keen to develop his awareness of danger (he doesn’t know what an awareness of danger is). He doesn’t have any mobility issues (still had a wheelchair until last year), has a healthy diet (he’s never eaten a vegetable and I have to keep fruit covered because he can’t even stand to look at it) and he likes trying new things - his bedding is ten years old because he won’t agree to me buying him anything to replace it.
Under ‘Personal Outcomes’ for each section she’s written a list of things I’m doing which don’t affect him - ie, chasing his medical records (which seemed to go from England to Scotland via the Moon, took about nine months for them to get here), getting a secure tenancy (he’s not on it and doesn’t know what a tenancy is, doesn’t affect him in the slightest) and managing his benefits for him (which I’ve had to do because he can’t and there’s no-one else to do it). She’s also filled ‘Carer’s Views’ without asking me what mine are, so I’m pleased to tell you all that I do provide a high level of support and I am aware that he might want to leave home one day.
Needless to say a complaint has been made, I’ve requested a new social worker, an urgent assessment of his needs, support for him while the Guardianship order goes through (as they won’t let me manage his budget without it) and I’ve had a Carer’s Assessment done at the local Carer’s Centre which I’ve told them to get sent across (apparently they have to request it) and that states very clearly that we all need to be working towards me going back to full time employment as quickly as possible, with him looking to move into some sort of care/supported living set up in the next five to ten years. I’ve made it very clear that I am not willing to keep doing this and that I am sick to the back teeth of being expected to work 168 hours a week without pay and having gormless social workers treating me like a child (the carer’s assessment lady wrote it up and phrased it all politely but you get the gist). I have also discovered there is a good facility fairly near by that seems to provide everything from a couple of hours of group support a week through to full time residential nursing care and everything in between. Haven’t been to see it yet but you’d have thought she’d have mentioned it as it seems they can do onsite activities, at home sitting, respite care there or here and eventually supported employment/accommodation etc?
Anyway. Hopefully my next post will be more positive. Has anyone managed to hang on to their sanity? Mine is long since departed. Lol xx
Mum who cares
They surely have mixed up your son with someone else!!?
I’m so very angry for you about these assessments. Seems nothing is correct.
I hope you can start to enjoy living in Scotland.
Hi Mumwhocares,
The forms sound a farce. Sounds like she filled them in months later in retrospect, never thinking you’d ask for copies!
Sounds like person doing carers assessment was more on the ball.
Is Guardianship just for benefits and care package? That must be a Scottish thing.
Worth checking out and making enquiries at the facility as could have a waiting list.
Keep us updated.
I can’t speak for anyone else, but I think I put my sanity somewhere safe, and forgot where I left it. No doubt it’s still safe.
We didn’t face anything like the problems you’ve had, but basically the message we’ve always given to social workers is that we understand our son’s needs and he has as much power over his life as he can maintain, given that his mental capacity is pretty limited. My wife went down the Deputyship route, which is as far as I can see the equivalent of the Guardianship.
It sounds to me as if you’ve dealt with the worst of it. As for the form filling, it sounds like something that was written about you years ago and was cut and pasted in. Happens a lot.
My son is 44,can’t reaan’t do any maths, can’t cross the road safely unless there is no traffic, so he has a companion bus pass as he can’t travelone. Nevertheless, his assessment waffles on about having more travel training so he can be independent?!
Hello everybody, thank you for your lovely responses and I want to apologise for not logging back in for ages. We went to a music festival at the end of May and had such a lovely time camping, dancing, eating food that is not Slimming World compatible and just generally behaving like humans that I couldn’t face dealing with reality when we got home and I’ve carried on pretending I live in a field and don’t have to deal with social workers. The complaint is still being investigated and we should get a response by the end of this month. I wrote my own version of a needs assessment, based on the PIP criteria and common sense, it took twenty minutes, is very straight forward and really a chimp could probably manage it, I can never understand why people make such a mess of the simplest processes.
Pet, hi Nice to see you, yes they make me angry as well. It’s just so much unnecessary faffing, and all I want to do is go out to work. I’d stay home with him if I got paid but Carer’s Allowance and Universal Credit is pretty grim and I just want enough money to live comfortably and be around other people some of the time, maybe even go and see a film that doesn’t feature superheroes or anime? Lol. We are having a lovely time living in Scotland, there are a lot of different social things going on that he’s joined in with, all supported and quite cheap to use so that’s great, but it still means me taking him and then hanging around until he comes out again. They’re not on for long enough to make it worth going home usually, I can do some errands and food shopping etc but it would be a lot easier if someone else could at least do one way. Anyway, onwards and upwards, I hope you’re doing okay xx
Melly, I think you’re right, I think she just bunged it in and presumed I’d not ask any questions. I do feel annoyed as I feel my ‘good nature’ is taken advantage of sometimes. I know everyone is overworked, under-resourced, up against it etc etc so I don’t go in guns blazing and I don’t mind waiting for stuff to get sorted. But then I feel like we get filed under ‘this idiot won’t say anything’ and that annoys me. The carers assessment lady was lovely, she’s been both an unpaid carer and worked as a professional one so she really understands all aspects of the situation and knows who should do what, how to word things and so on. She was great. The guardianship is for me to make decisions on his behalf with regard to finances and welfare decisions - it was explained to me that for him to have a personal budget and arrange his own care (which is what we need as the council provision is very rigid and very limited) that I have to have legal power to decide which carers are right for him and pay them, plus keep records etc. It seems quite straightforward, it’s just a lengthy process and one that I should have been informed about a long time before, I think. He’s happy which is the main thing, I’m knackered all the time which is nothing new! I hope you and S are well xx
Thank you Charles, yes, it feels like a cut and paste job, there are things not even in the correct columns. It’s shocking really, they’re degree educated and yet basic admin seems to be too much. Your situation sounds similar to ours, I want my son to make his own decisions as far as he possibly can but there are areas he doesn’t understand and someone else would need to decide on his behalf. I think that sounds quite straightforward? I don’t know why others find it so complicated. I think Deputyship is probably the same as Guardianship, I know Power of Attorney is different because that’s for people who have capacity to decide who will act for them if they can’t do it - I think I’ll put the cat in charge of me, she seems to have more sense than most Lol.
BB, the travel training thing drives me nuts. I think it’s just one of their box ticking things - if you can use a bus you can be independent. My son can use the bus with someone else there, because similar to your lad, he can’t work out a timetable, can’t ask which bus he needs and work out which direction he needs to go in, can’t cope with too much noise, having to stand, the bus being late, not turning up etc etc. If he got on the wrong one he’d have no idea how to sort that out, if it broke down and they all had to get off he’d have no idea what to do, if it caught fire he’d panic, he’s very easy to mug etc etc and yet they all seem to be convinced that if he just uses the bus more all of that will magically disappear. I think it’s that ‘fit and healthy’ person’s idea of what independence looks like, whereas for me it’s more him being able to eat his dinner when he gets home, have a bath and be able to sleep that night because he’s not been so stressed by the bus that he can’t function. They don’t seem to understand that. Perhaps I should tattoo it on myself and see if that works Lol, hope you’re well xx
Travel training is a tricky idea. My care company is planning to do a travel training day later on this summer. I may see if I can get out of it because I know what to do.