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Liverbird
Frog Princess
Joined: Jun 14, 2007
Posts: 1030
Location: My heart belongs to Anfield
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 Posted: Tue Jun 24, 2008 9:31 am Post subject: Advocates for us |
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I need help desperately! I need an advocate organization who works with people with AS. I live in the US, you can PM me for specifics. I need an organization that provides advocate services for people with disabilities. Especially someone who knows about Asperger's and Autism Spectrum Disorders. I basically need a buffer person. Does anyone know of anyone who does this kind of work? Who helps people with autism navigate these things as adults? Are we all just f****d?
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"All those things that you taught me to fear
I've got them in my garden now
And you're not welcome here" ---Poe
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krex
Phoenix
Joined: Jun 21, 2006
Age: 44
Posts: 4973
Location: Village of the Damned
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| Posted: Tue Jun 24, 2008 10:57 am Post subject: Re: Advocates for us |
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| Liverbird wrote: | | I need help desperately! I need an advocate organization who works with people with AS. I live in the US, you can PM me for specifics. I need an organization that provides advocate services for people with disabilities. Especially someone who knows about Asperger's and Autism Spectrum Disorders. I basically need a buffer person. Does anyone know of anyone who does this kind of work? Who helps people with autism navigate these things as adults? Are we all just f****d? |
I think at present we are all ......f****d. I am considering going to employment rehab, to see if anyone there knows about AS, but I'm not very optimistic. It seems as long as you can keep from being homeless, (even if you have to have parents or spouse help to remain so), you are to high functioning to qualify for services. Given how social services has been financially gutted over the past 20 years...they have enough problems finding resources to provide services to the "low functioinng". If you can manage to become psychotic, a drug addict or homeless they MIGHT have some services, but few social workers know what AS really is, so.... 
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Just because one plane is flying out of formation, doesnt mean the formation is on course....R.D.Lang
Visit my crafts store
http://www.etsy.com/shop.php?user_id=5412685 |
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Danielismyname
something something
Joined: Apr 03, 2007
Posts: 5370
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| Posted: Tue Jun 24, 2008 11:40 am Post subject: |
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I know that Asperger's qualifies for social services in the US, but you have to prove that you're "disabled" (as if getting a professionally diagnosed label isn't enough, but that's beside the point).
The government can probably provide social workers, they probably won't be versed on AS [or Autism], but they can probably talk for you if you need someone to do such. They do it over here, anyway (I have mummy dearest to speak for me, so I don't need such). |
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KingdomOfRats
Phoenix
Joined: Nov 01, 2005
Age: 24
Posts: 2494
Location: Manchester
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| Posted: Tue Jun 24, 2008 12:00 pm Post subject: |
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have tried the council [dont know what is called in US] to see if they have an advocacy service?
am use one called future visions,which is council based and is for adults with LDs in care,but they include ASDs as part of that.
the USs autistic organisation that have could be worth trying to see if they have an advocacy service,as am think the NAS over here now has one.
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[LFAutie]
["Even through the darkest days, this fire burns...always"-Killswitch Engage]
.:The residential autist:.
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Liverbird
Frog Princess
Joined: Jun 14, 2007
Posts: 1030
Location: My heart belongs to Anfield
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| Posted: Tue Jun 24, 2008 4:24 pm Post subject: |
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Ding!!!!!!!!!!!!!!!!!!!
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"All those things that you taught me to fear
I've got them in my garden now
And you're not welcome here" ---Poe
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Belfast
Vast Ambivalence
Joined: Jul 18, 2005
Age: 35
Posts: 1579
Location: New England
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| Posted: Tue Jun 24, 2008 6:48 pm Post subject: Re: Advocates for us |
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| Liverbird wrote: | | I need help desperately! I need an advocate organization who works with people with AS. I live in the US, you can PM me for specifics. I need an organization that provides advocate services for people with disabilities. Especially someone who knows about Asperger's and Autism Spectrum Disorders. I basically need a buffer person. Does anyone know of anyone who does this kind of work? Who helps people with autism navigate these things as adults? Are we all just f****d? |
Client Assistance Program (CAP)* was helpful for getting me into the system enough to then make use of further assistance in applying for programs. CAPs are in each U.S. state, a project of "Legal Aid". A nice woman came to my home & helped me fill in** forms, which then allowed me to qualify for free sessions with social worker (at community clinic which operates under federal Medicaid waiver).
* CAP also seemed sorta' like an interagency program, which was good since it wasn't immediately obvious under which umbrella (service category) I could be assisted under. Contacting "Ombudsperson" (within departments/collectives that have one) is an idea, too.
**My obstacle to filling in certain types of forms isn't physical, it's psychological (inability to comprehend what information is or isn't being asked for-am smart, but interpretation's tough).
For good & ill, much of the help or lack thereof seemed to depend on luck-of which individual I talked with (despite the notion of clear policies/rules). I didn't fit too well into the preset categories of who gets help-but eventually found those within these advocacy and/or assistance groups willing/able to wriggle me into an allowed definition.
Collected tons of brochures & "1-800" numbers around town from various community action organizations as well as from the local depts. of gov't. offices, then kept at the list in hopes that if someone couldn't help me then at least they might know who could. I didn't even have this (or any current) dx at the time, and I doubt many of those with whom I spoke or sought information from would've known what the dx meant (at least in an adult like me). Maybe understanding is gradually improving in some areas (still hasn't reached everyone, alas).
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*"You cannot administer a wicked law impartially-it destroys everyone it touches, its violators as well as its upholders."* |
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Liverbird
Frog Princess
Joined: Jun 14, 2007
Posts: 1030
Location: My heart belongs to Anfield
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| Posted: Tue Jun 24, 2008 7:20 pm Post subject: |
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Thank you Belfast. That was very helpful and extremely informative. I will work on this tomorrow. I did contact several agencies today that were very unhelpful. My boss is also working on finding me an advocate. Which is very helpful. He's calling people and asking questions for me.
I'm sure I freaked him out this morning when I was in his office this morning crying my eyes out and flapping like half crazy. He's saying calm down and take your time. I'm trying not to flap and apologizing for flapping and acting autistic.
I did collect a list of numbers today. I will take your suggestion and start writing down numbers, names, and info attained or not attained. Good idea. I'm not usually good at documenting these things, but I'm going to have to get better, obviously.
Please keep these good ideas coming. Helpful and constructive ideas are always good.
_________________
"All those things that you taught me to fear
I've got them in my garden now
And you're not welcome here" ---Poe
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Jayman
Pileated woodpecker
Joined: May 26, 2008
Posts: 199
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| Posted: Wed Jun 25, 2008 1:45 am Post subject: |
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| Maybe you could go to Autism Speaks. Give them money so that way we will be one step closer to having the option of killing your unborn baby if it has AS. Wouldn't that be great. My point being that no one is coming to your rescue. You have to do it all yourself. |
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Belfast
Vast Ambivalence
Joined: Jul 18, 2005
Age: 35
Posts: 1579
Location: New England
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| Posted: Wed Jun 25, 2008 9:16 am Post subject: |
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| Liverbird wrote: | Thank you Belfast. That was very helpful and extremely informative. I will work on this tomorrow. I did contact several agencies today that were very unhelpful. My boss is also working on finding me an advocate. Which is very helpful. He's calling people and asking questions for me.
I'm sure I freaked him out this morning when I was in his office this morning crying my eyes out and flapping like half crazy. He's saying calm down and take your time. I'm trying not to flap and apologizing for flapping and acting autistic.
I did collect a list of numbers today. I will take your suggestion and start writing down numbers, names, and info attained or not attained. Good idea. I'm not usually good at documenting these things, but I'm going to have to get better, obviously.
Please keep these good ideas coming. Helpful and constructive ideas are always good. |
Glad to hear this-I was afraid that your previous post (the "ding !") meant "time was up"-I didn't see this thread until after that post, so was hoping you'd still check for further responses.
Also, it can be hard because (and am sure this is common experience esp. for those of us with ASD) in some ways I seem too functional (not in need of help) yet in other ways I seem insufficiently functional (and not able to access or derive benefit from help that's available).
Have no smart way around that quandry, just to keep that in mind & perhaps even mention to whomever one's attempting to communicate with-"if I'm not enough this but I'm too much that, well, what do you suggest I do ? Hmmm ?" Maybe that's too hostile sounding (then I get accused of having 'chip on my shoulder')-but one can modify how one says this, so as to sound sad more than mad, if that seems like it would work better to elicit cooperation.
Most of the online lists I know of are bit out-of-date, alas. Go to this link:
http://www.vsarts.org/x630.xml
Then scroll down and download (document requires ability to handle a PDF) the Appendices. Skip first half of those pages (about artists & such), eventually one gets to list of "disability-related" agencies in each state.
Another PDF-
http://www.aspfi.org/documents/AspFI_Study_on_State_Policies.pdf
Had list (again, not up-to-date) of each state & which dept. handles "developmental disabilities".
Best of luck to you, sorry it's slow going.
_________________
*"You cannot administer a wicked law impartially-it destroys everyone it touches, its violators as well as its upholders."* |
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Liverbird
Frog Princess
Joined: Jun 14, 2007
Posts: 1030
Location: My heart belongs to Anfield
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| Posted: Wed Jun 25, 2008 9:58 am Post subject: |
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Jayman, I'm sorry that it's your experience that no one will help you. It's not mine. I find that like Belfast, you keep knocking on doors until you get the answer you need.
Belfast, I appreciate your help. I will add your lists to the lists that I have and keep knocking on those doors.
I agree with you that it's difficult for people to understand us especially when we seem some high functioning most of the time. I have the same problem. I seem okay until I get stressed out and then I lose all capability to function within normal parameters. It's weird, isn't it? Why do our brains lock up like that?
It's extremely frustrating when we do so well and then something happens that makes us feel so debilitated. I felt completely paralysed by my disability yesterday and it's so unfair! I hate feeling like that! I appreciate your support Belfast.
_________________
"All those things that you taught me to fear
I've got them in my garden now
And you're not welcome here" ---Poe
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Belfast
Vast Ambivalence
Joined: Jul 18, 2005
Age: 35
Posts: 1579
Location: New England
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| Posted: Wed Jun 25, 2008 6:04 pm Post subject: Re: Advocates for us |
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| Liverbird wrote: | | I seem okay until I get stressed out and then I lose all capability to function within normal parameters. It's weird, isn't it? |
When I'm in within my comfort zone (certain idiosyncratic parameters including sensory, emotional, physical, etc.)-then I'm doing well. When things happen, as they tend to do in life, then I can decompensate (become extremely disturbed/upset) pretty rapidly & intensely.
| Liverbird wrote: | | I live in the US, you can PM me for specifics. I need an organization that provides advocate services for people with disabilities. |
By the way, my geographical region is listed on all my posts-New England. I'm more likely to know about stuff in this area & am assuming that if you did live in one of those states (around Vermont/N.H./Mass.), you'd ask me for more detail/info. on resources. In other words, if that's where you are, feel free to pm me (so as not to disclose your location openly). Otherwise, you can ignore this comment...
| Liverbird wrote: | | I will take your suggestion and start writing down numbers, names, and info attained or not attained. Good idea. I'm not usually good at documenting these things, but I'm going to have to get better, obviously. |
Can't maintain/continue this "mode" indefinately or consistently (in everyday life). However, for critical time periods (during acute life crises) I can do the compulsive note-taking & record-keeping thing (for brief, intense bursts of activation). Metaphorically, "sprinting".
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*"You cannot administer a wicked law impartially-it destroys everyone it touches, its violators as well as its upholders."* |
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westernwild
Sea Gull
Joined: Oct 13, 2007
Posts: 209
Location: The wild, wild West
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| Posted: Wed Jun 25, 2008 6:29 pm Post subject: |
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I just incorporated a nonprofit organization that will focus on providing services, support and advocacy for adults with AS/ASD, learning disabilities and ADD/ADHD. I've posted about it before on WP and am putting together an advisory board for it now, with some WP posters as advisors. I'm just getting it off the ground, or trying to, as I'm trying to secure funding at this time. I'm focusing on adults because most organizations are for children and teenagers, or for family members of adults, and not the adults themselves. Yet they have as much, if not more, need for it. I know, because I have a severe learning disability with AS/ASD overlapping tendencies and my teenage son is an aspie.
I'd be glad to see if I could help. I am, or was, in the legal field and also have advocacy and communications/writing experience, which I hope to put to good use with this. PM or email me. I'm on vacation now with limited computer and internet access, though, so be patient for the next several days until I can once again get to full-time anytime access.
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Queen of the anti-FAAAS. FAAAS does NOT speak for me and many other families!!
Life is not about waiting out storms, but learning to dance in the rain-Anonymous |
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