group homes
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sggaB the Slug ama...@autistics.org
A few articles about what I meant: http://www.act.on.ca/Daily_News/2003/September/sept19.htm http://minervation.com/ld/quality/felce/supported.html And especially this one, but it's long: http://www.qualitymall.org/coffeeshop/impertransc.asp Even if you think they're good places, calling them something other than institutional is an iffy proposition.
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sggaB
"Simeon" nos...@ntlworld.com
Its giving me second thoughts. My mum wants me to go in a group home when something happens to her. I just want to live in my own house or flat with support when I need it most.
Sim
"whacko" edora...@worldnet.att.net
The problem with group homes is they force you to take medication, as a part of the program.
Just because you have shortcomings, doesn't mean medication is necessary.
If I was an artist, or a musician, I most likely couldn't use the tools of my trade because I'd most likely hang myself with the guitar strings, or slice myself with my crowquill pen.
That's what I know.
M.D I think it's better to be with your family, unless they are really abusive.
"sggaB the Slug" <ama...@autistics.org> wrote in message ...
sggaB the Slug ama...@autistics.org
Not all of them do that in particular, although mine did. Some are more keen on intensive behavior programs (which mine *also* did).
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sggaB
thayl ...@yahoo.com (Arak Thaylann)
True...
Here is an interesting link to a group called "Community Works" http://www.communityworks.info/ I met the founder online and he seems to have it together (That's where I got a hold of the "On Being Sane in Insane Places" Article).
Please let me know what you think.
Arak /|\
Vicky eye-expr...@comcast.net
Hi Amanda,, This stuff bring tears to my eyes.
I think of my son Vincent and how it is may be in his future that he live with my husband and I till Mark (my husband) dies . I say that because I probably won't live as long as Mark.
I know of a few parents in the bay area who have started their own ***isted living apartments for their children who are grown. It seems to be a full time task for the parent to make these sort of arrangements .
I wasn't ever able to view these places so can't comment on how good they were... I heard a horror story from a young man that stayed in a place in southern Cal and there was mental abuse by the staff going on in this place towards a autistic man who was saying a word repeatively.
The aim of this particular group situation was to teach the the residents independent living skills but they tried to do that though some werid punishment rules... Its frightening what goes on and it seems like for some odd reason,,, these places get away with abuse.
Vicky
sggaB the Slug ama...@autistics.org
I think it's mainly because we're not people in most people's eyes.
As far as your son goes, one thing I can tell you: Do *not* enroll him in *any* program run by Hope Services, no matter how many lines of anything good they try to sell you. (They're getting more desperate for good lines because as many clients as have the capability are leaving them.) They have apparently got a contract with the institutions to get people who are getting out of institutions, and a big part of that is so that they can get away with doing as little for people as possible, as far as I can tell. They sold me on their lines and it took me almost a year to get away from them (and they had done that recruiting on me because the last wave of clients had known better and left).
I am having much better luck with, of all people, the local Easter Seals office. They're a big organization, so they probably vary, but the office near Aptos is as far as I can tell genuinely very good.
Of course that will probably change, staff will change, and the like, by the time your son grows up. But there *are* decent agencies out there, which I was surprised at.
One thing you should probably be aiming at now, if possible, though, is supporting organizations that are pushing for supported living for people with developmental disabilities. (If you're not already doing so.) With the budget mess, we're one of the groups that's potentially targeted, and there are people (like those community imperative people, who have a lot of problems, but are the closest to working for what's right that I've seen) working to keep us out of group homes and other places like that (and some of them are even working on keeping us out of the "one-person institution" things, although they vary in cluefulness on that matter).
I would be afraid to live in an ***isted living facility built by my parents or anyone else's (I have found that the worst staff I have ever had have hands-down been people with disabled relatives -- too much emotional baggage, too much identifying me with their child/sibling/etc), but there are plenty of people who, even if they don't end up working, get SSI, help finding subsidized housing, and support to live where they want to live. It's in the law that this can happen regardless of degree of disability. but a lot of parents don't know the law and get pushed into sticking their kids in group homes etc.
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sggaB
growingj ...@hotmail.com
It should be possible for you to live on your own - other people in UK with autism do, some who post here and could point you in the right direction.
Now is the time to start getting things set up. Ideally, you would move out while your mother was still alive, so she could help you during the transition. She can also help get services and such.
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Joel
"Simeon" nos...@ntlworld.com
I'm still trying to find a paid job for myself. Thanks anyway.
Sim ...
thayl ...@yahoo.com (Arak Thaylann)
Part of the reason my mother pulled me out of the residential home I was in (after three months) was the fact that they kept trying to get her to allow them to give me sleeping pills and other drugs. They also use intense behavioural stuff that she didn't really like.
Not all programs require drugs though...although many may try and push them.
The place is still running...in fact thay're trying to raise $3.5 million to build a very large addition (twice the size of the original)...just for kids.
Interestingly, they would not allow me to take a tour of the place the three times I asked. They would also not allow me any contact with the kids (i.e.: just meeting one or two kids) when we were doing a volunteer drive there.
This is the same place that kicks them out when they turn 18. Their only words to that were "Yes, the workers get really sad when the kids turn 18 because we have to kick them out." Nice Arak /|\
thayl ...@yahoo.com (Arak Thaylann)
Hmmmm...by that logic I would most certainly *not* be allowed to keep my vast collection of interesting bladed objects! (I've been collecting interesting knives, swords and other bladed things since 1988) That would truly suck. :-( [Just so everyone knows, I am not a psychopath, I do not use these as weapons...I just have a fascination with blades and bladesmithing] Nor would I be able to keep many of my art supplies like my pen nibs and such. Or my embroidery needles or my knitting and crochet needles (I *am* going to learn this stuff...really I am!) I am so very, very thankful I am not severely autistic enough to warrant ***isted living or any form of instiutionalization. Very thankful....
Mind you, if I had lived this sort of life from the start, I don't suppose I'd really care, would I? I'd never know any different.
Kind of like the Handmaid's Tale by: Margaret Atwood when the Commander's wife and Offred are talking about Offred's daughter who is somewhere else. "Your daughters generation and the one after that will not suffer because they have never known any other way of life" the Commander's wife says. I still shudder at that thought.
Hmmm...I have a very strong will and a strong love of my personal freedom to do as I choose. That might have affected things somewhat, but who's to say?
I'm just glad am I am who I am. Arak /|\
growingj ...@hotmail.com
There are other ways of getting money then paid employment. If you have a DX, you may want to pursue public ***istance - at least until you get a job... It will make the case stronger should you find that work doesn't work for you, which some ACs find later...
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Joel
Kalen n...@paradox.freeserve.co.uk
That is not a prerequisite for moving out.
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Kalen A World Apart (Updated Oct. 20): http://www.worldapart.org/
Kalen n...@paradox.freeserve.co.uk
That's a gross overgeneralisation. It's quite common for people in group homes to neither need nor take any medication. In fact, most group homes I know of don't have any "programs" for it to be part of. But anyone who is not certified (sectioned, committed) can refuse to take medication, so I don't know how they're *forcing* people living in the community.
Sounds more like the psych ward in hospital than any group home I have seen, lived in, or heard of.
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Kalen A World Apart (Updated Oct. 20): http://www.worldapart.org/
Kalen n...@paradox.freeserve.co.uk
I can't make heads or tails of those articles (one didn't work at all, the other two I can't find the relevant parts of without more brain power than I have at my disposal atm), but it's becoming very clear that whatever the heck you're talking about when you say "group home" is not remotely close to my experience of them (which is not as limited as you often seem to ***ume). It makes no sense to discuss something when we are using totally different terminology.
It's like if you said "chips are too salty for me to eat" and I said "Why are you complaining? Just put less salt on them." When what you mean by chips is the thin crispy things in packages (crisps) and what I mean are the thick cut strips of potatoes (french fries).
My participation in this discussion is just as pointless without any common point of reference. But there are lots of other people here who seem to know exactly what you're talking about, so I'm sure you'll have a great time agreeing with each other without my misunderstandings messing things up.
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Kalen A World Apart (Updated Oct. 20): http://www.worldapart.org/
Kalen n...@paradox.freeserve.co.uk
When were you in a residential home? I thought you said she never allowed you to be institutionalised and that you were indistinguishable from NT by school age. I'm sure it's all true, it's just not adding up to me - missing info, I ***ume.
What else did you expect them to say about it? My foster mother was sad when I had to leave because there was no appropriate place for me to go and what I truly needed was to stay there a few more years before even attempting independence at all - even with supports (which I didn't really have). She was worried about me and how I would fare as an ill equipped and vulnerable young woman.
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Kalen A World Apart (Updated Oct. 20): http://www.worldapart.org/
Kalen n...@paradox.freeserve.co.uk
That means that you will not have the opportunity to make sure he is in a good, safe, appropriate place. You would be leaving it up to the system, with him having nowhere to go and no one to turn to if the place is not okay for whatever reason.
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Kalen A World Apart (Updated Oct. 20): http://www.worldapart.org/
sggaB the Slug ama...@autistics.org
I'm not having a great time doing anything, agreeing or not.
A "group home" as defined here is a house that disabled people, usually people with few to no rights, are ***igned to (almost always by someone else) with staff that are hired separately from the clients, clients don't have a lot of say in anything really, the degree of good vs bad treatment varies but it's basically a house-shaped institution benevolent or not.
There are *other* things where you can get funding for supported living, and move in to a place of your own choosing, with or without a roommate, and the people funded to help you will help you with all the moving and stuff.
You can have disabled roommates but it's not a group home because it's not an organization. I mean the house itself isn't an organization, it's just for instance two disabled people deciding they want to share rent costs and a staff person (or rotating staff people, or multiple staff people) who may or may not live with them helping out with stuff. That is not a group home, no matter how many people live in it, because it is a bunch of people being roommates and getting help, not an organization or company or something buying a house and plonking a bunch of people in it.
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sggaB
Kalen n...@paradox.freeserve.co.uk
> What if the people living together are set up together by some organisation, but they choose whether to live there or not and the organisation helps them to choose and manage staff they want? For a lot of people, it could be very difficult to network in the necessary ways to find others to live with as well as deal with the administrative details of staff without any outside help. If the choice is only one extreme or the other, I could see a lot of people falling through the cracks.
I don't know what you'd call the group homes I'm most familiar with.
Some are set up by organisations, so you'd call them group homes. But a lot of them are individuals contracted directly with social services to set up and run a home for a set number of people, usually with certain kinds of needs.
e.g.1 My mother ran a group home in our family home for teenaged girls who had been in trouble with the law. They may have had some choice over whether to live there or not. Most needed support to learn independent living skills before they were ready to be on their own, and most of them were aware enough to acknowledge that. Some were just killing time until they were 16 and allowed to be fully independent. My foster care situation was roughly similar, and my brother was in a group home while in care when we were younger.
e.g.2. Myself and some other autistic people (about 4 total) were in discussions with the head of an organisation that had experience with group homes for more severe autistics (people who mostly needed full time one-to-one while awake). We would have chosen to live there, but it was the organisation that would have helped us procure funding, find the house we wanted, staff it (including hiring and firing - but no way would they have done any of that without input from all residents), and deal with all administrative tasks related to setting up and maintaining it. If officially unemployed and disabled, they would get funding from the government for our care and we would get the same welfare living allowance as anyone who lives in a room and board situation. (If employed, funding would be somewhat more complicated in ways I can't fathom.) Funding and administration would be no different than for their more disabled residents in other homes. (Unfortunately this never happened because the only person in the organisation who gave a crap about HF people resigned due to ill health and some kind of administrative cock up.) e.g.3. Someone eventually gets around to setting up the housing scheme they always talk about and never do. It is intended for autistic people, has a set number of places, and comes with built in autism-related support. It is set up by the NAS or similar organisation. I apply to that and anything else that seems appropriate (nothing exists for me at the moment, but often there is more than one scheme appropriate for an individual). I choose whether I like it and want to live there. I meet all my housemates and decide whether I like them, investigate any programs and support and decide whether they are appropriate. If the place is mostly suitable, but my needs would not quite met, they discuss possible modifications. I could stay here, or I could live there.
Totally up to me. If it's local and I have a support worker I adore, I could probably take her with me as a community support worker aside from the built in support. If that is in a place with some common living area, rather than totally independent flats or houses, is it a group home? If it is totally independent residences, but set up and run by an organisation is it some kind of institution?
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Kalen A World Apart (Updated Oct. 20): http://www.worldapart.org/
entr ...@farviolet.com (Lawrence Foard)
In article <AS3xb.230059$mZ5.1736177@attbi_s54>, It seems like some sort of relatively hands off organization is in order.
Could a bunch of parents get together and raise money to start something which is non intrusive and non abusive?
You need supervision by someone who really understands human psychology in regards to the motivations behind abuse. Power is an addictive drug, I don't mean that as a figure of speech! Personally given the opportunity for addiction to power and abuse, I don't think day to day staff should ever be given control over residents. Staff should serve residents not control them. Perhaps if there is a reason for control (resident being violent), there should be staff to deal with it who generally don't deal with residents except in a crisis. That way the normal staff doesn't develop a taste for control and power. It needs to be clear that staff works for residents, residents are not the property of staff. But in any case someone needs to keep a watch out for staff with power trips. Really it should be as hands off as people can deal with. Also watch out for staff lazyness, absurd rules to prevent some obscure problem which once annoyed some staff member. Often in organizations there seems to be a policy to write a new rule for each problem.
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Evil creeps on normal human feet, normal, cute, harmless, charming death whispers in your ear "surrender to me", sinking sinking lulled to sleep by his siren song. 'no' the spell is broken. The vampire walks away.
Be a counter terrorist perpetrate random senseless acts of kindness
sggaB the Slug ama...@autistics.org
Yes. You are right. These are not extremes to me, but you are right that I left that one out.
[And I apologize for my last two posts to you. They were probably not coherent, and certainly probably didn't say all that I meant to. I got in over my head, and that's my doing, not something I blame on you, for the record. It was a "floor dropped out from under me" sort of moment in my head, and fairly idiosyncratic to me, although I'm going to be wary of the feeling I got right beforehand from now on.] I basically consider it when a thing [organization/individual] creates a home for a group of other people fitting a certain description (disability is the one I'm most familiar with), usually either without knowing the residents first or without the residents being involved as much as possible in the planning of the place. (And basically the whole idea in general that 'care' should be set up so that it's a group.) But I'm having a lot of trouble with language around this.
There are situations where it's the best of all available choices, but it's still this sort of thing that's only a main choice because there's this idea that "care for this sort of person must take place in a congregate setting". There are a lot of states in the US that are trying to slowly move away from that, and the one I live in is one of them. If I lived in another state, I would likely *be* in a group home right now if I could find nobody to take me. (And American group homes are very power-away-from-
residents, almost universally.) That I would consider one.
That sounds closer to how I define supported living.
That could go either way depending on how it's set up. Power is one of the more crucial aspects of which way it goes, and so is the degree of access to the outside world (which goes beyond physical proximity) and how that is controlled or not controlled by staff.
What happens here is that people who get into supported living programs get ***istance finding a house or apartment, finding compatible roommates if they want them, moving in (I was even offered help finding a way to get loan money for a house if I wanted one), hiring and firing staff, and managing just about any aspect of daily life we need help managing.
This is done by a process where the Regional Center approves supported living funding, they fund an agency (picked by the individual but also determined by how many places are open in the agency) to provide the services after an ***essment period, and things try to go according to that plan.
Of course, this, like any other situation, is not perfect, and I think it's in need of vast improvement. But I like it a lot better than an *insistence* that I live with a whole group of people simply because we share in common the fact that we are disabled, which is what the group home system here essentially is.
(By imperfect I mean that the last two years have been *hell* trying to get these services, deal with a corrupt agency that promotes scary people and fires good people and tries to withhold all staff from clients it sees as a problem, and so forth. I spent a long time without the staffing they'd promised until the Regional Center intervened, and even then they were trying to sabotage it. This sort of thing happens in some agencies, more than others. The current agency I'm with has been more than happy to ensure that things are as optimal as they can possibly make them, and the contact guy at that agency even comes out to my house in place of my aide if she's not available. The current agency is actually better than I could have hoped for.)
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sggaB
Vicky eye-expr...@comcast.net
True Kalen, but it may be that Vincent also will not be in our home when he gets older and it may be that he will be independent and self supporting. Right now he's 11 and he says he wants to be an accountant when he grows up... that may happen but then again who knows.
I do see your point. My husband may have a different outlook than me altogether. I haven't asked him what he forsees in Vincents future yet.
Thanks for the input :) Vicky
Kalen n...@paradox.freeserve.co.uk
I already replied, so I guess if you didn't say what you meant then my replies won't be relevant and can be ignored. Of course, you could ignore them whether I say you can or not.
My county is very progressive wrt HFA/AS. They have a fledgeling Asperger team at social services, consider us developmentally disabled not mentally ill, and are setting up supported housing.
I don't think it was very institutional, though. In some ways it was just because of the number of people living in one house, but I've heard of very large families that were similar. But it was my own family home where my parents and siblings lived with me. When I was in the special care foster home it was also their own home and very extremely different from the real institution I spent a lot of time in back then. When I was younger I was in a children's home for a time while they tried to find foster placements. That one was not a normal house, had segregated boys and girls sides of the building, rotating staff, and no significant care or connection between the staff people and residents. That I would call an institution even though a lot of the time there were no more kids there than the family-based group homes. What made a big difference was the rotating staff as opposed to caregiver(s) who made their home there.
But that one would have been charity run. The difference between that one and the ones they already had would only be in that I was pushing for it with the organisation person. We would have been in a better position to express our wants than their typical residents were, but they did their utmost to find out what their clients really did want and to do it for them. e.g. They could determine how their room was painted and decorated if it was possible to work out what they wanted. (Many could definitely communicate well enough to say, but others' communication was minimal to none.) I was often envious of their residents because it seemed to me they had a far better standard of living than I was likely to achieve as someone "too high functioning" to need that kind of support.
Most such places that I'm aware of use the staff in a large part to help facilitate community access.
Isn't the last bit what the staff themselves are for? It sounds similar to what we have except that we have more of the control of (and unwanted responsibility for) the money and inadequate support from a charity that has a very poor grasp of our needs. Also, I think things are excessively fragmented here so the people who can help us buy a house or get a roommate are completely unknown to the ones who set up the support workers.
And those are big differences. We don't use agencies. We could get agency workers via social services, but the whole point in getting the direct payments is that there are no agencies with appropriate support services for us. And if there has been any planning, there hasn't been a lot of communication about it.
I think I would be better off in a place which was set up for autism.
The only way to do that is to put us in some kind of proximity to each other as there just aren't enough of us for that in a small geographic area. A group home setting wouldn't make sense now that my family is approaching the size of many group homes here.
Good reasons for having non-agency based workers (because I do kind of have that choice). The disadvantage of not using an agency is that we can have these huge months long gaps with no practical support at all.
And it can come at a bad time with illness, late pregnancy, and housing crisis adding substantially to our support needs. An agency would have managed to fill the gap at least somewhat. But the agency workers hate us. They think we're lazy and aggravating and that their job is to drag retards around town, not clean up after lazy disgusting intelligent people who won't get off their arses except to criticise and are far too rigid about schedule changes and lateness when there are quite obviously people with far more important needs who must be a priority. (This was the general attitude from our last two agency workers and the reason we haven't had any since. The agency said they didn't have anyone else to send us who would be any better. Obvious poor understanding of our needs and the fact that despite appearances we're autistic just like the learning disabled ones, but their poor understanding is not something we can fix.)
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Kalen A World Apart (Updated Oct. 20): http://www.worldapart.org/
"Larry" N...@larry-arnold.com
Until the new mental health bill is p***ed with community medication orders, notwithstanding they are allowed to poison the water with flouride anyway.
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Larry "We are all of one mind, one equal mind, and if each of us persists in being the centre of our own existence we are all doomed to suffer at each others hands. I cannot exist on my own without you, neither can you be without me, what is the world wide web about after all?. We are interdependent whether we are aware of the fact or not" ...
"Larry" N...@larry-arnold.com
I envisage a situation wherin people live as a co-operative and manage there own care within the context of being owners of there own property held in common. I am on the waiting list to get back in to the co-operative where my mum used to live, it was a way of living where people had control over rents, repairs and everything whilst sharing the responsibilities of home ownership so that the burden did not fall on any individual as it does if you own your own.
There are other alternatives to gruop homes such as serviced accomodation.
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Larry "We are all of one mind, one equal mind, and if each of us persists in being the centre of our own existence we are all doomed to suffer at each others hands. I cannot exist on my own without you, neither can you be without me, what is the world wide web about after all?. We are interdependent whether we are aware of the fact or not" "sggaB the Slug" <ama...@autistics.org> wrote in message ...
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