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#1 MiddleEarthNet

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Posted 24 June 2015 - 07:49 AM

Now that my home life, job and mental health have deteriorated to such an extent that I am signed off but can't face being at home so I am spending my 'working day' walking around, it has been suggested I move away from my parents home into supported accommodation. Problem is my local council consistently don't seem to care. They say time and time again, that because I am living at home, they won't do anything.
And no one has ever properly talked through my options with me. It doesn't help that when I get assessed, I am functioning so they don't see the times when I am not functioning.

Has anyone got any advice? I can't manage totally on my own and knowing my luck, I'm probably earning too much to get help but not enough to actually be able to afford a place ie my wage is really low but because I was working full time, it was just over the limit to qualify for help. But now of course my job and ability to work is uncertain.

#2 Mihaela

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Posted 24 June 2015 - 06:49 PM

My own mental health has deteriorated ever since I lost my mother in 2012, and I too spend the days walking around - or glued to this computer.   I understand your predicament very well, for I've been involved with a housing-related support organisation and heard many similar distressing stories.  I live alone (well, that's not counting my 3 cats!), have no work, and I'm not yet claiming any benefits, and I need the practical support that I had from my parents. It was a battle getting a support worker, but at last I now have one.

 

Problem is my local council consistently don't seem to care.

 

Exactly!  They don't care.  They see us as a nuisance.  So much for the Equalities Act and the Autism Act!  I hear this from others and experience it myself.

 

They say time and time again, that because I am living at home, they won't do anything.

But they would, wouldn't they?  It gets them off the hook and saves them money, but you are entitled to a home of your own.  Supposing your parents didn't want you there - the council would have to find you somewhere.  Which council is it that's messing you about?  You could do with finding an advocte with experience of autism to speak for you.  If you have a housing-related support group or disability rights group in your area, they'd be able to help you.



#3 MiddleEarthNet

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Posted 24 June 2015 - 09:48 PM

Hi, thank you for your reply. I don't want to post my local council as that gives away where I live. I haven't spoken to my parents about whether I stay at home with them or move away from home. The state I'm in at the moment, I'm not really able to make decisions.
I want to work and as I said, I do have a full time job but increasingly I wasn't coping. I don't have a support worker. The closet I've got is someone working for the council whose job is supporting people with learning difficulties or Asperger's in work. But he does at least have notes of all the things that have gone on since early March.

#4 Mihaela

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Posted 25 June 2015 - 03:48 PM

I only asked because I have a lot of experience with two councils and know people who could advise you for one council's area.  Like you I'm in no state to make any kind of big decisions, and I don't think I will ever be.  My parents always helped me over that kind of thing.  My support worker was here today helping me with decisions.  Next week she's taking me to various places to start getting things sorted out for me, such as a photo for a bus pass, advice over money, etc. If he has notes as you say, they'll be useful if you do end up having a support worker. 



#5 MiddleEarthNet

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Posted 26 June 2015 - 06:32 AM

I'll put my local council into a message to you but won't post it here.

Yeah, he's got pretty extensive notes :). I did have a social work a few years for a very brief period but they were useless.

#6 Livelife

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Posted 26 June 2015 - 06:39 PM

I have no experience of being in that situation as I have always lived with my parents or moved in with somebody I was in a relationship with. I've never lived alone I don't think I would be capable of doing so. I currently live with my partner and my mother my father having passed away years ago.
I fear being in that position of having to deal with that alone especially as help of any kind is difficult to access.

#7 MiddleEarthNet

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Posted 29 June 2015 - 08:45 PM

I've never been in a relationship.  I've not even experienced the emotions so I probably will never be in a relationship.  Unless my cat counts of course :).



#8 Charlie C

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Posted 10 July 2015 - 03:56 PM

I'm the other way round, currently living in supported living and desperately want my own flat or house. Too much politics here especially with some staff moaning about tenants getting too much benefits, more then them after they've paid their rents and bills and tenants getting too much disposable income. My allocated staff member today was moaning about another services getting too much money and not having that 'bad Autism, he could get a job but he's lazy'.. I bet he's slagging me off behind my back. I have just been released from a section 3, well still on it until Tuesday, section 17 home leave. Spent 5 weeks in hospital suffering psychosis on top of ASD. Is it really possible for me to be working when I'm getting sectioned all the time and that member of staff slagging another service user off. Makes me feel bad.



#9 Livelife

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Posted 29 July 2015 - 10:10 AM

I'm the other way round, currently living in supported living and desperately want my own flat or house. Too much politics here especially with some staff moaning about tenants getting too much benefits, more then them after they've paid their rents and bills and tenants getting too much disposable income. My allocated staff member today was moaning about another services getting too much money and not having that 'bad Autism, he could get a job but he's lazy'.. I bet he's slagging me off behind my back. I have just been released from a section 3, well still on it until Tuesday, section 17 home leave. Spent 5 weeks in hospital suffering psychosis on top of ASD. Is it really possible for me to be working when I'm getting sectioned all the time and that member of staff slagging another service user off. Makes me feel bad.


That's something that we have to get used to people always treat us that way and think we shouldn't have anything if it means we have a quality of life or something we actually enjoy.
People like that should be sacked for mental cruelty and abuse of vulnerable people in their care.
But we have no valid opinions because we are autistic, I have always tried to be fair but the abandonment lack of support and general abuse of my condition has proved you can't trust anybody I thought you could but I have been proved wrong.

#10 Livelife

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Posted 29 July 2015 - 10:13 AM

I've never been in a relationship.  I've not even experienced the emotions so I probably will never be in a relationship.  Unless my cat counts of course :).


You have a companion who is honest and only needs the basics food warmth and care if they get that they are happy and loyal. Then there are people and most should be ashamed of themselves for what they do you have made the right choice.


Edited by trekster, 06 August 2015 - 11:11 AM.


#11 MiddleEarthNet

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Posted 08 August 2015 - 08:37 PM

Well several meetings later and apparently any support will only be temporary.  Its as if my Asperger's just vanishes with their timer runs out.  As well as the teams in place to help are doing a good job of helping me NOT trust them.



#12 Special_talent123

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Posted 09 August 2015 - 12:39 AM

Been in Supported Living myself and most llikely be going back to one again, well these type of accomodations only last 3 years, can be longer as the council make it difficult to get your own place, which is to get you to be as independent as you can they are preparing you for the world to live alone. Manage bills, support you to cook, anything you have difficulty with they will support you. Some of these accomodations will be Monday-Sunday and few hours a day, but some are 6 hours a week. For me that it be 6 hours of support if i go back into one and most likely need my home help in to help me manage my day to day things that i cant manage IE the cleaning.



#13 Mihaela

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Posted 13 August 2015 - 11:19 AM

You have a companion who is honest and only needs the basics food warmth and care if they get that they are happy and loyal. Then there are people and most should be ashamed of themselves for what they do you have made the right choice.

Very true.  Apart from a few loose friends who know me pretty well, all I need for regular company is my cats.  I couldn't live with another human being for very long.  They'd interfere with my routine and interests and stress would increase.  Both me and my 'best' friend have zero sexual needs which makes life a lot easier in that way.  We have our own kind of relationships and can have a lot of fun without feeling threatened by others expecting from us what we just can't give. 

 

Well several meetings later and apparently any support will only be temporary.  Its as if my Asperger's just vanishes with their timer runs out.  As well as the teams in place to help are doing a good job of helping me NOT trust them.

 

This is what I fear too.  When I need more support than ever, I find I'm not getting it, due to staff being on holiday!  So I'm having to wait, and force myself to temporarily forget all my worries about coping in this mad world.   All autism-related support should be guaranteed as lifelong.  What do they expect when they withdraw it?  I still feel that we should all support one another as much as possible, for I'd sooner trust another Aspie (more honest, more loyal, unpaid) than a neurotypical paid worker.  This is one of many reasons why active user-led support groups are so necessary - everywhere.






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