At my wits end

[Caitra]

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!

[baddad]

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

[Caitra]

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

 

[call me jaded]

I have a family member with mental health issues and long term cannabis use who has dipped in and out of crisis despite a tonne of help and support from many family members - can't tell you how many times we've all got together to bail him out. His mother has said to me so many times that she hopes that this time he'll sort himself out. And yet he doesn't, ever.

 

I'm not sure that there is much more that you can be doing other than be there to pick up the pieces. There doesn't seem any preventative agencies out there. I did some work for what was then the Healthcare Commission around people in supported housing. There seems to be a cycle of sinking into debt, being close to being made homeless, having some kind of breakdown and being admitted to hospital, then being put into supported housing again. Very depressing stuff that has stayed with me. I'm not sure what help there is out there. It's all gate kept by some very tight access criteria so that you really do have to be at rock bottom.

 

You have my sympathies.

Edited August 13, 2010 by call me jaded

[baddad]

Hi again caitra -

 

As I said in my last post, I think the main difficulty you have here is that it's you seeking support on your brother's behalf rather than him seeking it. That doesn't mean that support will be easier to find if you can get him to do the asking ('cos services are dire whoever is asking) but at least you'll have a starting point.

Assuming you can get him to do some asking (or at least indicate his agreement to you asking on his behalf) I'd still think that backchaining back through his previous support networks will be the best way of establishing the kinds of support he might need and then accessing new versions of them. So even though his supported tenancy was in a different town, presumably through a different LA, then at least you can gather info on what support he needed, how and by whom it was provided, how it was paid for etc etc. There would also be some paperwork, I guess, detailing when he left that tencancy and maybe within that you'll find some indications/evidence that it was felt not to be in his best interests to do so, or for him to give up the support he was receiving. that would give you some foundation (along with any 'evidence' regarding his failed tenancy/rent arrears etc) to work from with SS etc in your own area.

Of course, all of that is dependent on your bro's willingness to accept that he needs support and to seek, or allow it to be sought, on his behalf. Without that, all you can really do is, as CMJ said, stick around to help pick up the pieces if necessary...

Another observation I'd make there though (and it's possibly an upsetting one, but relevant none the less) is that sometimes having someone around to pick up the pieces can be part of the problem. It's probably a good idea if you can take a few steps back in that regard (i.e. about his housework and stuff) while negotiating some sort of expectations of him regarding the really important ones (like money-management etc). As you say, at the moment he just sees everything as 'nagging', so rather than wasting your breath trying to sort out everything for him just concentrate on the big stuff and let the smaller stuff slide.

Final thought - you've said all the agencies involved have told him it's his 'last chance'. What do they mean by that? The fact that there are agencies involved means someone somewhere is acknowledging his problems (even if only to disassociate themselves from responsibility) . Badger them for a defintion of what 'last chance' means - and what happens if his 'last chance' fails.

 

Hope that's helpful

 

L&P

 

BD

[call me jaded]

Yes I agree there can be 'learned helplessness' if there's always going to be someone there to pick up the pieces. You get to a point where you accept that or walk away. As a family we do it to support the mother who is now getting on a bit and who we really can't leave to get on with it as she was being taken advantage of quite outrageously. The thing is to step back emotionally if you can. Very difficult I know.

[trekster]

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 marvellously 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.

 

i have the tendency to not be able to tell a situation is dire until something drastic happens. i go to my gran with my issues despite also having home help and im currently trying to get some psych help but my health authority says "we dont treat asds". If you see my signature you can tell why i think that decision is preposterous! i am currently waiting after 2 months for the refusal letter for short term help so i can appeal to PALS http://www.pals.nhs.uk/ for the decision to be overturned. i have a tendency to use my impatience to my advantage so i wait so long for people to get back to me about services before i ring them up to chase them on things.

 

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.

 

See if there is anything in here you can use to appeal the decision for no help to be overturned, http://www.opsi.gov.uk/acts/acts1990/ukpga_19900019_en_1

i guess it would be cruel to take a step back and wait for him to come to go elsewhere for help?

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).

 

He needs help with form filling, applying for benefits, keeping his flat clean, knowing when to trust someone, knowing when to ask for help and how to ask for help. Does he need help with cooking or other health needs?

 

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

http://www.opsi.gov.uk/ACTS/acts2006/en/uk...n_20060047_en_1

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 have problems getting my support workers to attend on days when gas/safely inspections occur. Im part of the advanceuk housing scheme. Have you tried asking for his housing officer to find him some home help? Despite a few hiccups i have never been threatened with eviction from this housing scheme. http://www.managingmoney.org.uk/ManagingMoneyLogin.aspx for help with managing money for autistics.

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 no-one seems to do anything like this.

 

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? http://www.autism.org.uk/working-with/soci...nd-support.aspx

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

 

Sounds like he is severely depressed and has given up. Maybe the girl he got involved with brainwashed him into believing he didn't need help when in fact he clearly does.

 

Books that could help include, "how to be yourself in a world that's different" "anxiety and depression workbook for dummies" "user guide to gf/cf diet for autism, aspergers and adhd".

Edited August 14, 2010 by trekster

[BuntyB]

Hi, I think it's perfectly natural to worry about your brother considering his lifestyle, and although I agree that everyone has a right to live how they want to, sometimes people aren't able to have insight into where their behaviour croses the line into it being a risk.

 

Firstly, who did the assessment of your brother? Social services depts have physical disabilities teams, but also, mental health and learning disabilities. Sadly autism tends to fall between services but I do think that there is a greater awareness of the problem. If you've tried one department, try another.

 

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.

 

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?

 

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.

 

having 'no services' isn't an excuse not to help. If they have decided that your brother is entitled to help but can't find any specialist help so refuse him anything, that's just silly. He has a right to have a direct payment with which he could buy his own support, or check your area for 'Supporting People' and ask if he could be eligible 'floating support' to help him with his tenency. To my mind, he could be at risk of eviction if you weren't bailing him out...!

If I can help further, let me know.

Sx

[trekster]

Hi, I think it's perfectly natural to worry about your brother considering his lifestyle, and although I agree that everyone has a right to live how they want to, sometimes people aren't able to have insight into where their behaviour crosses the line into it being a risk.

 

As an asperger who constantly gets herself into sticky situations and somehow out of them i totally agree with you. i can only shower for example if ive offloaded what's bothering me and causing a mental block into using the shower 1st. Also i cannot shower on my own unless ive put some music on to get me in the shower. i rarely get praised for doing something that is very difficult for me to do.

Firstly, who did the assessment of your brother? Social services depts have physical disabilities teams, but also, mental health and learning disabilities. Sadly autism tends to fall between services but I do think that there is a greater awareness of the problem. If you've tried one department, try another.

 

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.

 

"taking responsibility" http://www.sacramentoasis.com/docs/8-22-03...ponsibility.pdf details that unfortunately the situation with your autistic brother applies to other autistics in the UK. It also mentions some of your rights like previous posts ive done on the subject do. When you try all departments mention you need help for your autistic brother instead of Asperger syndrome, unless you are attempting to access something like the Liverpool Asperger team.

 

i pay my mum a small amount so she can clean my flat for me. i do however have some home help but as soon as i have visitors i feel so bad about my place being untidy that i start clearing up as guests are there. If you can prove hes a vulnerable adult that is currently incapable of making his own decisions social service may accept you can speak for him.

 

ive got the opposite problem that my current care plan doesn't reflect my wishes, needs or desires so im trying to get that sorted out currently. Unfortunately forgetting to eat or shower isn't enough reason for my local care agency to provide help on bank holidays. They dont have staff willing to work on bank holidays and being unable to remember to eat or look after myself without help isn't enough reason for them to provide help. Only patients requiring medication can be supported on "too expensive to support you" bank holidays.

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?

 

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.

 

I've read some reports (NAS welfare advice) that all autistics should get at least lower rate mobility and middle rate care indefinitely. Unfortunately indefinitely doesn't matter after 2012 (or is it 2015?). You can fill in DLA forms and sign without permission from your brother on the grounds that "he is unable to understand the forms and do it himself" (not accepting that aspergers is a disability that requires DLA applications counts). All working autistics can apply for DLA so this would apply to autistics that are in or can currently work.

 

By posting here mentioning you are "at your wits end" clearly indicates your family is in crisis to me. But you have to detail how that crisis affects you, do you for example have to 'drop things' last minute to help him out? Does he self harm? He has severe depression by his behaviour i expect you are the same?

having 'no services' isn't an excuse not to help. If they have decided that your brother is entitled to help but can't find any specialist help so refuse him anything, that's just silly. He has a right to have a direct payment with which he could buy his own support, or check your area for 'Supporting People' and ask if he could be eligible 'floating support' to help him with his tenancy. To my mind, he could be at risk of eviction if you weren't bailing him out...!

If I can help further, let me know.

Sx

 

It is downright negligent to refuse to help your brother due to no local help. For direct payments i know of an autistic who had part of her direct payment set aside so once a week someone could come in and do the payroll. Part of the contract of support is "remind me when your wages are due".

 

[Caitra]

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)

[JsMum]

Hi I have just gone throw difficulties accessing support for my son and this post may be helpful.

 

http://www.asd-forum.org.uk/forum/Index.php?/topic/23743-update-social-service-care-needs-solisitor/

 

I recieved a list of solisitors who specialised in Social Care from NAS.

 

There is also the Community Law Services, due to your Brother recieving certain benefits he may be entitled to Legal Aid who will help your Brother draw up a personalised Care Plan that Identifies his NEEDs, as this is the KEY word, it isnt about Criteria but NEED, as you will no daught get after reading my link post of what I learnt going throw the Solisitor road.

 

I am afriad it is increasingly difficult to get support from services as the Local Authority are too quick to say oh we dont provide that service, but if your Brother needs spersific provisions it has to be made available.

 

NAS also may be able to direct your Brother into spersific Services for Autistic Adult accomadation, in our area, there is some fabulous flats with 24 hr support if they require it, or they can live as independantly as they are able and capable of, so it would be totally tailored to your Brothers Needs and he will be the one making the desicions.

 

 

I hope you get somewhere with NAS I absoloutly recommend them to discuss your issues with reguarding support for your needs and your Brothers Needs.

 

JsMumx

[call me jaded]

What if he pays you for a couple of hours each week to sort him out? Keeps on top of it and ensures it's done and mentally you're not giving up free time. And you wouldn't be nagging him to do it. Over time you could recruit someone else.

[trekster]

Hello Caitia

 

The taking "responsibility report" http://www.sacramentoasis.com/docs/8-22-03/taking_responsibility.pdf

i mentioned earlier has 2 sections that are relevant to your case which prove your social services department

is neglecting to help your brother. ive mentioned a few relevant sections below in the hope you can draft

a complaint about whats going on. If you can also follow Jsmums advice on her thread.

 

Social services cannot legally refuse to assess yourself or your brother no matter what excuses they give.

It is against the NHS Care in the Community Act.

 

"Assessment of need is a legal duty under The NHS and Community Care Act 1990. It is

dependent on appearance of need, not consent for assessment. This is an important

principle in relation to engaging with someone who has Asperger syndrome. Whilst consent

should be sought and rapport developed appropriately, ultimately there will be occasions

when the person may find it difficult to engage in a co operative way."

 

"People will often mask their difficulties for a number of reasons, so care managers

need to take care not to assess someone as more capable of independent living than

they are. Without a network of family and other informal support many ‘capable’

people would end up in statutory services in a crisis state."

 

"People with Asperger syndrome may find it difficult to engage in the assessment

process for a number of reasons. All of the following factors need to be considered in

order to create a meaningful assessment process:

[trekster]

What if he pays you for a couple of hours each week to sort him out? Keeps on top of it and ensures it's done and mentally you're not giving up free time. And you wouldn't be nagging him to do it. Over time you could recruit someone else.

 

i think that's a good stop gap measure, also Caitia have you tried applying for Carers Allowance for yourself?