Unity in the Autism Community, Last Call...

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An international unity at this moment in time is impossible and I dont think i need to point out why that is the case when the healthcare systems/history and cutlural factors are apparent.

However im sure give it a few years there may be an opportunity then

Being better than something awful doesn't make something good. And again, just because your experiences are good does not mean everyone's are. The personal butler and a limo thing is a low blow, seriously.



I was in the Regional Center in Santa Cruz County. I wanted enough assistance with daily living tasks to at the bare minimum keep me fed, hydrated, and clean. I also wanted freedom from abuse by caregivers, for me and for others.

I really don't appreciate you making light of these things. I'm not a liar and I'm not spoiled. Before I was a Regional Center client I was first living in institutions and then starving.

The Regional Center at one point told me I was "lucky" to get food two times a week and should be content with eating that often. The Regional Center knew and did nothing when a client of the same supported living agency I was with was locked in a bare room of her own home with nothing but her own crap to play with. (She escaped that situation, but not thanks to the Regional Center.) You may not see people like her because they are kept secret by their agencies. The agency that did that to her, had something going on where the Regional Center would send people to them straight from state institutions, people who wouldn't be likely know the difference between the abuse of that agency and the abuse of institutions in other words. The Regional Center also tried to run the best staff I and another client ever had out of the field. Some of them also threatened me with a group home every time I asked for a decent (read, food, water, etc, no limos) standard of living. The Regional Center knew about all kinds of things like that, and did little to nothing to stop them. (You do realize that in addition to independent/supported living programs, the Regional Center also oversees group homes and larger institutions, corrrect?)

Again, please don't belittle this stuff like it's asking for a limo to be treated with basic human respect and dignity. I find that really offensive. These are things that even representatives from the Area Board considered major human rights violations (and there's a lot more like that), and you're sitting here basically telling me I'm ungrateful to have been abused and neglected, and watched others get the same, while the Regional Center looked on. And you're also calling me a liar. I'm not a liar. I believe you when you say your experiences are good, why can't you believe me when I say that many of my experiences are bad and the experiences of pretty much every client I know, as well as parents, were bad?

Maybe the one you are at is better, or has improved, or in your case you're able to get what you need out of them, but that does not mean they're all wonderful. I've tried to get people into their services before, because the services they offer can be good, and I certainly stayed with them, but this does not mean that they were doing the job that ideally they were supposed to be doing. (Again, I'm not talking limos, I'm talking basic needs for human life minus starvation/dehydration/sitting in own filth/etc.)

Are you in southern California or something by the way? I don't know much about the Regional Centers there. Most of what I've heard is from central to far-northern California.



Yeah there is a lot of things better, and I'm already living with it -- in another state. I had several service coordinators, and only one was much good.

I had to keep silent about some of this stuff when I lived in California, for fear of retaliation (read: group home). I'm sure not going to be silenced now that I'm out of California and have nothing to fear from the Regional Centers anymore. Especially not by someone who just happens to think that none of this ever happened, for reasons I can't even figure out.

I just remembered, also, that I knew several people who received death threats from people at other Regional Centers (not mine, further north I think) for speaking out on seeing abuse or neglect. I never got that because I was not seen as particularly powerful, these were people who worked in the system. Also, one of my best staff was exposing abuse and had a Regional Center employee tell her that she hoped she would never work in the field again.

This stuff doesn't happen out in the open, by the way, and they're certainly not going to go out of their way to show their more satisfied clients their dark side.

Laz is right. Most of the discussion on this thread is from an American bias/perspective and because of the various different cultures/laws/health systems there's no possible political way through for complete unity.

However, I don't think that means we should not try and help one another. Isn't that what forums like this do all the time anyhow? Yes, it's low key...but at least through the internet we can not only talk to one another but share experiences and ideas without having to make face to face contact.

To me that's bigger than legislation. Most political people don't 'get it' anyhow, even when they have it explained to them :S

Apple

You should call your service coordinator, any employee aware of abuse would have helped you. I will be taking your posts into the regional center and you can PM me if you like.

Again, I do not believe you entirely. Some people make things up to cuase problems, especially to derain a post.

Well When the uk community wants to get its act together I would like to see some kind of parnternship with european mainland countries, Germany/Austria logically being the first country to link up with due to their advanced knowledge of aspergers and the money they put towards provision for aspergers.

International unity can make for standards for service provided.

I don't live in California. My service coordinators were often part of the problem, when I did live in California. "Talk to your service coordinator" only works when said service coordinator is not corrupt. What I did end up having to do was going all the way to the head of the Regional Center about some of these things, the Area Board about others, and Protection and Advocacy about others, and only the parts involving me necessarily got resolved, the problems for other people continued. (And part of the resolution in my case was that the Regional Center paid staff to assist me in leaving the state, and I now live in a state with better services, although not perfect and in some respects the Californian system-in-theory had some advantages in terms of programs offered. Had I stayed in California, it would have continued to be a ridiculous level of fighting to get even what I have now.)

Everything I have said was truthful to the best of my knowledge (I've expended too much energy to learn communication skills in the first place, to want to lie about much of anything, plus I am a very poor liar and would not be able to keep track of lies sufficiently to tell them plausibly, so I stick to the truth most often), but I am sorry I derailed the thread. Sometimes I respond to one part of a thread and miss the main point, but the derailing isn't intentional. I'll talk about these things somewhere else instead, when I do talk about them.

The problem is, what you have done is trashed an organization without proof to show. IF you were in the newspapers and asked questions then it would be different.

I have no personal evidence that the regional center is anything but great. Even by searching online, people will have complaints but sometimes I think there are bad people working anywhere.

If they do not have services you need, then they are not funded for it, but for what they do have, it is better then gov social services.

I thought that your problem was with me possibly trying to derail a thread.

Unfortunately the only proof (besides the people involved, who are now thousands of miles away from me, but who would easily vouch for my stories and then some, at least the ones who can talk would) I have is in the experiences of a lot of people who are generally too unorganized or disenfranchised to end up in newspapers. We almost went to the papers about one woman but didn't end up having to.

Although some of this was discussed at the Community Imperative conference in Oakland a few years ago, which I attended. And people took pictures of me there but I never saw what was done for them. I am briefly in the videotape of that conference (which does of course not show all the speeches, including some of the ones that discuss these problems). That is probably the most press you will see of me, and I am not typing in that videotape, they just show me looking at some fliers.

I gave personal experiences and the experiences of those known to me (through the Regional Center, related agencies, or at one point a FEAT chapter and a parent group I dimly remember but don't remember the name of). It's all I have. It's also generally all anyone has in these situations. Most things don't make the papers. I'm usually not subject to this level of scrutiny for talking about these things on a discussion board. They're just part of my life, and most of my life, like anyone's life, has not been in the newpapers or other media. And the media do not tend to cover this sort of thing unless they're arguing against community-based services, which is a usage of these stories that I totally oppose.

Oh wait here is the guy the Regional Center won't take, he got in the paper in an effort to get his case more known (Golden Gate Regional Center never did take him and he's still stuck in mental health 'services'):

http://www.sfgate.com/cgi-bin/article.c ... 7QF561.DTL

But... again... I thought your problem was you thought I was making this stuff up to derail a thread, and now I am derailing it further in replying to you, which I do not want to do. You will in general see, if you look around, that many of these stories have been told by me before, and not in threads where the content of these stories was contentious.

Write your entire complaint with as much balance as possible, I will hand it into my service coordinator and to a memo to the local directors whom will hopefully forward it to the proper persons.

This if you have not already filed a complaint or grievance fully.


With regards to people with A.S not being accepted, A.S is not considered as serious as a disability as .H.F.A or other forms of autism. The local directors I was informed did speak about it, intake did request that they accept them but it did not work out.

If people with A.S just want to socialize, then I could always help construct new groups and market current groups. I think doing this in California is better then nation-wide, seems a challenge as it is.

If enough family members, persons with A.S and others gather together to try to get them in the Regional Center then I am sure a political pressure can be persuaded for funding. However this takes a collective effort that is organized. Current funding should not be jeopardize for higher functioning individuals when there are those with more needs of course.

I wish you had pm’d me your complaints that seem out of the ordinary to me privately, instead of the public embarrassment.

I'm not trying to embarrass you publicly, and I wasn't speaking to an audience of one so PMing you would not have made any sense.

Your particular Regional Center is not involved in any of the problems I know about (some of these problems are systemic, so I'd assume that there are some of them there, but still), so complaining to them would also not make sense. The relevant Area Board has already been contacted with most of this stuff, since they are the ones who oversee the Regional Centers and are the logical people to talk to. And there are people in California already working on these things, as always.

Social skills are not the only problems people diagnosed with Asperger's can have, and some can have as serious problems with life skills as some people diagnosed with low-functioning autism. Yes, this isn't how the diagnosis is supposed to work, but it is still how it works, if a person did not have a language delay or early-in-life life-skills delay (even if later in life they did have those delays). For instance the author of Finding Ben had her son denied for Regional Center services because, despite having immense trouble with life skills and an IQ test where he got something like a zero in his nonverbal IQ score and the absolute top in his verbal, and so forth, they just said "Well it's Asperger's so he has no problems," and he was stuck in the mental health system. Language was the only thing he was good at. People with fewer language skills and more self-help skills than he had, could get Regional Center services.

I still don't understand why you identify so strongly with the Regional Center that you would be embarrassed by someone publicly describing the actions of other Regional Centers. It makes no sense to me. They are not your identity, they are just an agency, that have done good for you (which is a good sign, they're improving) but possibly not so good for other people, and definitely ones that you are not affiliated with have done bad things that are known to some people here, which is why I and others on this thread have mentioned it. I'm sure none of us have anything against you personally.

I still think a good system of services could exist for autistic people, but again there are better models. In VT we have no state institutions and very few group homes, yet people get services, for instance. There are problems here but they're not the same ones as in a system half-committed to institutionalization, and when problems occur the bureaucracy required to navigate is much much more accessible. The main trouble here is the rigidity of the service models, and some of us are talking to legislators about that.

It's not an embarressment for me, rather for them. I identity with the Regional Center as a positive, it provides individualized services that meet the unique needs of the individual.

If you have already complained, then I would want to understand the balanced view after there conclusion by a 3rd party, not a view projected from a bias.

I've got some of the Area Board notes at the bottom of a drawer somewhere (which go into detail), as well as the Protection and Advocacy ones (which just basically show that the Regional Center had not approved or denied me yet, ask for a hearing since they went past their date, and suddenly the Regional Center approved me, but not after my mother's phone calls, only after P&A threatened a hearing), but that's about all I've got. Everything else was handled orally or through third parties. Some involved people working on my behalf because I did not know my rights at the time, or the intricacies of the system.

Seems more like your business that is personal, I'm more interested in any and all claims of abuse, quality of life fouls and bad treatment of any kind.

Yet not getting in is like not getting accepted in any other program, I am fairly sure it is about funding, otherwise anyone claiming the need of such services should get it. Well in a perfect world where helping people did not require money.

My quality of life assessment (Area Board) is on file somewhere and documents some of this stuff. Most of the abuses and stuff that happened to me, were either unresolved, or resolved orally, rather than in writing. The abuses that happened to other people, I was not the one who filed complaints on their behalf, that would be in the incident reports and so forth, but there were of course false reports of abuse and so forth that ended up in incident reports too as retaliation against staff advocating for clients (the fact that it's retaliation is not documented of course). I think one of mine is on file with Adult Protective Services but only one, and no disciplinary measures were taken against the perpetrator because I was the only witness and I guess it was my word against hers.

The things with people not getting in, was that technically they do have the functional deficits that mean they pretty much have to be accepted. My problem with getting in, was one of the Regional Center going past its own legal deadline and refusing to respond to phone calls from my mother. They did let me in once badgered by the appropriate agency, but only then. This is one way they covertly deny services (I have heard from other parents as well as from Protection and Advocacy in Campbell, CA), they just never approve, don't answer phone calls, and hope that the person goes away. That is usually when it is undeniable the person qualifies.