At my wits end

[At my wits end]

Thank you everyone for the advice you've given me a lot to think about.

 

How about you ask for support for yourself? Thats how gran got help for me. Keep a diary for 2 weeks of all the things you have to help your brother to do. No matter how small they seem it will all add up to so much work.

 

The assessment from Social Services last week was supposed to be a carer's assessment for me but they assessed my brother again and then told me there was little point in doing a carer's assessment because they have nothing to offer in the way of help. The only thing she suggested was paying someone to come in each week and tidy his flat (he's dead against that a) because he doesn't want to pay b)he sleeps all kinds of strange hours and c) he just doesn't want anyone to see his mess which I can understand)

 

The fact that this girl had managed to convince him to drop his support system for something else proves he is a vulnerable adult.

 

He is very trusting and he'll gladly give anybody anything, keeping away people who try to take advantage of him is difficult especially when they become aware that he gets a sizable amount of money in benefits compared to others. He always believes the best in people which when it isn't frustrating a nice trait to have!

 

Have you tried asking for his housing officer to find him some home help?

 

Our council housing was sold off a little while ago and is now a housing association and the only programme they have is STEPS which he had for the first year he lived here but now he is too old to get that support.

 

i have a separate bills a/c to my current a/c. Every week my DLA goes in and most of that gets transferred from my current a/c to my bills a/c. What's your local CAB like? They have negotiated for "pilot man" to change his debts to £1 a week. Would your brother accept a NAS support worker if there was 1 in your area?

 

The CAB have been pretty useless, when he first came here I went to them for advice and they said that because of the problems at his previous address he just wouldn't be housed anywhere here even though he wasn't at fault. I had to get him housed myself. As far as money management and sorting out his debt both the CAB and Fiscus both said they could help and have been mysteriously quiet ever since and I've chased them up several times. He might be willing to have NAS worker, I'll talk to him about that.

 

Firstly, who did the assessment of your brother? Social services depts have physical disabilities teams, but also, mental health and learning disabilities.

 

The social worker told me that they don't have a learning disabilities department and that although she dealt with physical disabilities her department also did all assessments.

 

secondly, don't clean his flat for him. ask if social services will do a visit when you are there so they can see what's happening and tell them you are worried because you don't think he has insight into the effect he is having on his health. For example if he needs prompting to eat and maintain reasonable hygiene because of his disability, these are eligible needs.

 

They saw the state of his place at his second assessment and at the last one I provided them with pictures, all I keep hearing is that they don't have anything to offer and he has a right to let it get to the point where if seen he would be evicted. I'm not asking them to clean the place themselves or try and force him, just help to get him into a routine and motivate him to do it himself. If I go round there and talk to him while he does it, he will do it (in a fashion lol). It's more a case of most of the time his attention being focused elsewhere and really having no clue where to start rather him not being willing. When I went and cleared his place out the last time he did help, it was mostly me because he faffed around doing things that didn't really matter because that was what he'd focused on but I'm not trying to force him to live in a way that I think he should I'm just trying to keep a roof over his head. I'm not exaggerating to say that he would be evicted, it was like one of those houses you see on the tv show Life of Grime. We're talking fire safety and environmental health because of attracting vermin.

 

How is he supporting himself financially? Does he get DLA? If so, that should be an indicator he is vulnerable. If he isn't getting DLA, get it applied for. You have said he can't do forms himself, so are you his appointee?

 

He was awarded DLA for life and I've just got him onto ESA though I'm expecting a battle with that soon enough. Yes, I fill out his forms and have permission to speak to the DWP etc.

 

Social services do not need to provide services if he already has sufficient 'natural' support. have they decided that he does have needs but you, as his sister, are already meeting them? If so, you have to make it clear if you cannot support him, because of other commitments for example.

 

No they just said that they have nothing to offer him. I explained that I could no longer cope supporting him and how it was affecting my health and life in general and all she could suggest was the local carers centre who might give me a grant to go to the gym (most helpful)

[At my wits end]

Hi caitra -

 

I can't say for sure because your post is unclear on the matter, but I think the problem you might be hitting is that it is you asking for support rather than him. What you're saying - that this isn't 'normal male behaviour' - is true to a degree, but it is also certainly true that it's not abnormal behaviour for some 23yr old men (or women, for that matter, or older men and women). I briefly shared a flat with a couple of (NT) blokes some years ago, and while they were reasonably clean in their personal habits (that said - I've known a few soap-dodgers too in my time) the flat itself was an absolute pigsty. The day I moved in I cleaned it from top to bottom, puking twice in the process after finding a maggot-riddled mouldy pizza writhing under the sofa and a fridge full of mildew and bacteria - and I'm no Aggie Mackenzie myself! Similarly, I moved into a bedsit in the early eighties that had just been vacated by a young laydee, and I was scraping filth off the kitchen units with a wallpaper scraper for days. Some people can live that way and others can't - but unless your brother's habits are causing a noticeable health risk or nuisance to others it is not something a landlord - especially a council landlord - would evict or be able to evict him for. In fact, if you weren't raising the issue with them, chances are they wouldn't even know. Similarly, there are many people who chose to live very isolated lives and there are many people who immerse themselves in role-playing games online, and while that may seem 'wrong' to others they have a perfect right to do so if they so wish, and as long as it's not interfering with anyone else. Debt, obviously, and personal money-management issues related to debt, are a huge problem for many thousands of people, but they are not in any way exclusive to autistic people...

So while I can appreciate fully how frustrating and heart breaking this must all be for you I can also see why social services and other support organisations you are approaching might be giving the answers they are giving...

 

On a more practical level, from the description you've given it sounds as though your brother has his own tenancy on a rented flat. It doesn't sound as though it's a 'supported living' flat in any way, so how was that flat obtained? If he graduated to that tenancy from a supported environment then SS must at some point have been involved in helping him achieve that, and in the decision making process that led to the new, unsupported tenancy being deemed appropriate for him. If his ability to manage that tenancy is breaking down, then it's probably best to start working backwards through the paper-trail he would have generated getting to this point, so you can identify for SS what his needs were, where he's at now and why the support needs to be reinstated. You'll need your brother to be active in that process, because if he isn't, and there is no recognised legal imperative for you to act on his behalf or as his advocate, then there's really nothing anyone can do.

 

In the simplest terms, unless there is something other than his diagnosis and your assessment of his needs and abilities to indicate that your brother isn't capable of looking after himself then he has the same rights as everyone else (quite rightly) to live his life in the way he chooses without interference from anyone else. And that includes you as his sister. I trust you'll appreciate that I'm not 'having a go' in any way or trying to undermine what must be very genuine concerns for you. I'm just stating the reality that his 'human rights' must, in the eyes of the law, take precedence over your concerns until/unless he is deemed medically unfit to make those life decisions for himself.

 

Hope that's helpful, and that you can access some support soon.

 

L&P

 

BD

 

Oh I totally understand what you're saying, I suppose really it is me who needs the support rather than my brother so that's why I've been the one to do all the asking. What I really wanted from Social Services or whoever was someone else that he could go to rather than me as often he doesn't come to me when there's a problem until he's in a complete mess. As I'm his sister I'm the last person he wants to talk to about these things because he views any suggestions from me as nagging and interfering lol. When he first moved into his flat he had a support worker that he had a really good rapport with who helped him to manage his bills etc and he was motivated to do some housework because she would visit him but because of his age that was taken away from him and it's since then that the problems have really started. He thinks he's coping marvelously but that's because I'm constantly putting out the fires, so no he doesn't really want any help but every few days there's a new disaster to sort out.

 

He went into supported living in a different town to me when he left home and my mother emigrated. He quickly met a girl who convinced him to leave it and get a place with the council there as a priority and I believe he had some help with the application from Stonham but it ended there. The nutshell version is he was evicted for not paying the rent and because of the state of the property (the rent problems weren't actually his fault he asked for help to fill out benefit forms, it was never organised and he didn't know how to sort it out). I then stepped in and got him housed here (not very easily but I could prove that he'd had no help).

 

I suppose what I don't get is why at 22 he could get some support but suddenly just because he's 23 magically everything should be ok. My worst fear is that the same situation happens again because if it does there'll be nothing I can do to help him and it very likely will. He has almost lost his place once already because he wouldn't let them in to do a gas safety inspection which is part of his T/A as it was such a tip.

 

I don't want anyone to force him to do anything he doesn't want to, not that it would work, just help him with organising his money and bills that sort of stuff. He was flourishing with his support worker and had consequences he could understand. He could go to her about anything he didn't understand and would keep his place reasonable for when she came to visit as he knew that she would have to report it.

 

The whole system seems insane though, social services say they can't provide any kind of support because he doesn't have a physical disability but the DWP say he must be perfectly fine and able to work as he doesn't have a social worker. They didn't actually say he didn't need support just that they had nothing to offer him and noone seems to do anything like this.

 

I do try to limit how much I step in and try to get him to do things for himself but apart from removing myself completely and allowing him to lose his home I don't know what to do. Perhaps if I did do that he would finally understand the consequences but then there would be no options left to him anymore. When I got him his flat all the agencies involved said that this was his last chance, which I keep impressing on him but he thinks it would all somehow just work out

 

[At my wits end]

Just wondering of anyone has advice about where I can go to get some support for my brother, I've tried every option I can think of but just keep hitting brick walls. It seems that now he's an adult he's just expected to suddenly be able to cope with every day life even though he never could before.

 

He was diagnosed with AS, ADHD and behavioural problems in his teens, went to a special school and upon leaving there has just been left to fall between the cracks.

 

In the past year alone I've had him assessed by Adult Social services three times who tell me that they have don't services to offer unless he has a physical disability which I just find mind boggling, I tried to get him support from two different local college schemes for autism but he is just out of the age range they accept, Connexions have no support to offer and he isn't willing to accept things like befriending from NAS.

 

I am seriously worried that he is going to end up homeless and living in the streets, I try my best to help him but it's taking a toll on my health now. He can't cope, I can't cope and no-one is willing to acknowledge there's a problem.

 

He is very isolated with no friends beyond those on the internet, cannot budget his money to save his life so has increasing debts and has a very loose relationship with housework and hygiene. The only thing he likes to do is play Runescape (his 24/7 obsession for the past 7 years) to the exclusion of all else. He used to be very good at making friends (though not at keeping them) but now he has no interest in meeting people or going outside and gets quite anxious at any suggestion of meeting people.

 

They are trying to tell me that this is normal male behaviour despite me explaining that it goes beyond that. I've had to gut his flat several times now because keeping it clean and tidy is just not something he focuses on. If the council were to see it they would evict him. Last week the rubbish in every room was waist high and I took out over 60 bags of refuse. His teeth were black and rotting from drinking copious amounts of high energy drinks to stay awake playing Runescape and forgetting to brush them. He has huge energy bills because he doesn't like to have his curtains open so the lights, tv and stereo are always on and he has his heating to the highest setting 24/7 even in summer. I've tried to get debt help from the CAB and Fiscus but nothing is ever done.

 

This is not just a lazy boy who plays computer games, choosing not to pay his bills and acting like a slob!

 

I don't feel that he is capable of work (at least right now) and so arranged for him to go onto what was at the time incapacity benefit and despite providing a host of medical evidence concerning his diagnosis etc the retired ENT surgeon (because beyond his basic training I'm sure he knows a great deal about ASD's) decided that my brother's diagnosis was probably incorrect and awarded him just one point.

 

It just seems insane to me that everyone I go my brother is viewed as being perfectly able, I know that AS is very much a hidden disability but these are professionals!