Anyone succeeded in getting US disability benefits for AS?

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PlicketyCat
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21 Feb 2008, 7:47 pm

Hi, I'm new here but this is my most pressing issue right now. I'm 36 and was only recently diagnosed with AS. I've been working with a psych who specializes in Autism and she doesn't think most work environments are suitable for me. I agree with her because I had a nervous breakdown at my last job and have suffered from agoraphobia ever since... I only leave my house to go to doctor's appointments, or for a quick trip to my corner store. Anything else, my husband has to go with me and I start losing it after about 30 minutes anyway. I have AS hypersensitivity issues and also PTSD, which makes most environments totally unbearable... I get overloaded very easily and start to have panic attacks. I feel like such a weenie because I have some great technical skills, but unless a job allows me to work from home with no personal interaction other than a few emails, I'm screwed. So far I haven't had any luck finding one of these mythical jobs, not even as a freelancer. I've been thinking about applying for SSDI, since I can't deny the disability anymore and can't find a way around it either, but the whole process looks daunting. I've been diagnosed with Aspergers, Schizoid tendencies, PTSD, Social & General Anxiety Disorders, Panic Attacks, Agoraphobia, Depression (with anhedonia and dysthymia). I don't even know how to begin documenting this because some of my previous therapists don't agree with my new psych, and I don't have an extensive medical history of meds and stuff because I found out early that meds made me worse. I've considered hiring a disability attorney to help, but they like to talk on the phone (noooo phones!) or meet in person (noooooo people!), plus they take a big chunk out of your first check.

Has anyone been granted SSDI benefits for their AS and ancillary mental conditions here in the US? It just seems so much easier to prove a physical disability than a psych one. I'd really appreciate some help and any information or tips you could pass on.

Thanks,
PlicketyCat



daveybaby
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22 Feb 2008, 10:36 am

Get your therapist to write you a note claiming you need disability benefits. This combined with the diagnosis should be enough to get you so SSDI. If you an Autism Spectrum Disorder, you'll be dealing with DDD and DVR. You should make contact with DVR (Division of Vocational Rehabilitation) as soon as possible. Just make sure you are consistent with them, they won't do any work for you unless you call them. I just reached a point where I was so desperate, I HAD to start using the phone, for the sake of my own survival.



PlicketyCat
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22 Feb 2008, 12:44 pm

Thanks for the info DaveyBaby. What kind of work will the DDD & DVR be doing for me? Do they act like an employment service to find you jobs and like a vocational 'retraining"? I've done pretty much every kind of job, so my tech skills aren't lacking... I just can't deal with human contact or leaving my house at all. Do they have services that are going to help any better than my pyschotherapy? Does the SSDI require that you be evaluated by these agencies and work with them in order to qualify for and maintain benefits?

I can use a phone if I have to, but I have a really hard time understanding speech, especially over the phone and that starts to stress me out and I miss all sorts of information. I can hear them just fine, but the sounds don't make words and sentences most of the time unless they speak very clearly. I will have to call the lawyers, and maybe even go see them at the office... so I just hope they don't mumble and I don't have to travel outside my "safe zone".



daveybaby
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22 Feb 2008, 12:57 pm

If you're living with people, then they can probably help you with the phone and travelling issues. DVR can get you a job coach who can hold your hand into a job. They don't offer much in the way of training, it seems you already have skills. And yes, they have vocational testing to see what jobs you are capable of working in (specifically based on your disability). I think DDD also offers some sort of emergency relief, you'd probably need something like that right now. If you have a bunch of forms with diagnosis on them, then you can mail those into DDD or DVR. The more screwed up you seem, the more likely they are to help you.



PlicketyCat
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22 Feb 2008, 1:13 pm

OK, that makes sense. I'm married and my husband makes enough for us to get by for the routine stuff and we have health/dental insurance through his job. I'm not immediately in need of emergency relief, but my lack of income is causing a financial pinch. Looking at their website, I'm wondering whether I would qualify for DDD services because I'm intellectually high functioning, I just have environmental issues... basically I can do lots of work, I just can't do it where they want me to or with other people. This has been a major source of frustration for me... in a controlled environment with no personal interaction, I'm almost "normal"; but I decompensate quickly with more stimuli. I'll check them out though.

DVR might be able to help me find a "telecommuting" job. I have a car and can drive, so transportation isn't the problem, the problem is simply leaving my house. I managed to live independently and support myself (quite well at times) for most of my adult life despite my (then) unknown disability; but ever since this last crash, I haven't been able to get it together again. I'm worried that this will actually work against me when it comes to qualifying for any services or securing benefits. I'm not as developmentally challenged as many people these services seem designed for, I just can't control the anxiety issues anymore... if that makes sense. But I will look into DVRs offerings as well.

I definitely have a bunch of diagnoses that indicate that I am truly messed up... I'll just cross my fingers and pray that its messed up the right way.

Thanks for your help.



Belfast
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22 Feb 2008, 4:25 pm

Each state differs in how the agencies decide who they serve/handle.
http://www.aspfi.org/info_art_ssi.htm
has general info. on applying for SSI and/or SSDI.
http://www.aspfi.org/documents/AspFI_St ... licies.pdf
has pdf with list of states in U.S. & which department is responsible for people w/PDD's.
The site is out of date by a couple years, but has good info. nonetheless.

PicketyCat wrote:
I'm married and my husband makes enough for us to get by for the routine stuff and we have health/dental insurance through his job. I'm not immediately in need of emergency relief, but my lack of income is causing a financial pinch. Looking at their website, I'm wondering whether I would qualify for DDD services because I'm intellectually high functioning, I just have environmental issues...

My claim was assisted by social worker & other inter-agency (community activism) people, who were invaluable in filling out paperwork (I understand words fine, but the crazy way stuff is worded on official forms confuses me & I can't figure out how to answer).
So, I got SSI as an adult (have never been able to hold job on regular basis, which means I couldn't get SSDI, only SSI). I'm smart, but not in useful way. Thing is, I was divorced at the time-so I was poor enough to qualify. SSI eligibility=you must have less than $2,000 in assets/resources. Dunno' about income, but there's definately limit to what you're allowed to own/possess, and still collect monthly SSI money (not much-but is better than nothing).


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PlicketyCat
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22 Feb 2008, 5:00 pm

I'll check out those references. It sounds like DDD/DVR might be performing some of the functions that hiring a disabilty lawyer would... helping with the paperwork and SS process. I'll definitely check into that, because I certainly don't want to give up 25% of my first check if I don't have to.

I don't qualify for SSI because my husband's income and our assets are too high; but after working for 18 years, I should qualify for SSDI.

Did your claim get approved the first time, or did you have to resubmit it with an appeal?



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23 Feb 2008, 7:24 am

PlicketyCat wrote:
I don't qualify for SSI because my husband's income and our assets are too high; but after working for 18 years, I should qualify for SSDI.

Did your claim get approved the first time, or did you have to resubmit it with an appeal?

Realize my situation is different from yours, but where they overlap, I figured the links could be relevant. Don't know much about SSDI, only SSI.
I applied twice before in years past, but those were on basis of various problems that lacked diagnosis. Didn't get ASD dx until early 2004, when I was 31-then I applied for SSI a 3rd time. Was rejected at first but my "team of professionals" (not lawyers, but a shrink & various counselors, etc.-who helped, at no cost to me, because my dx qualified me for their services in this state) provided more info. to the deciders & I finally got accepted almost a year later. So it was sort of "an appeal" & sort of "not": no legal experts or court-just tons of paperwork, waiting, pestering bureaucrats & the like.


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V001
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23 Feb 2008, 11:23 am

Sddi gives you a very small amount of money. Not worth the hoops you have to jump thur to get. The us gov does not want to help but were talked into it shows on sddi.



PlicketyCat
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23 Feb 2008, 12:34 pm

V001 wrote:
Sddi gives you a very small amount of money. Not worth the hoops you have to jump thur to get. The us gov does not want to help but were talked into it shows on sddi.


According to my last Social Security statement, I should be receiving around $1600 a month (based on how much I've already paid into the system). SSI might be a bit more, but I don't qualify due to my husband's income.



PlicketyCat
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23 Feb 2008, 12:37 pm

Belfast wrote:
I applied twice before in years past, but those were on basis of various problems that lacked diagnosis. Didn't get ASD dx until early 2004, when I was 31-then I applied for SSI a 3rd time. Was rejected at first but my "team of professionals" (not lawyers, but a shrink & various counselors, etc.-who helped, at no cost to me, because my dx qualified me for their services in this state) provided more info. to the deciders & I finally got accepted almost a year later. So it was sort of "an appeal" & sort of "not": no legal experts or court-just tons of paperwork, waiting, pestering bureaucrats & the like.


I didn't want to apply until I had a strong dx. I'll check out the DDD & DVR to see if I qualify for any of their services, especially SSA filing support. My psych and doc are really helpful and supportive. What kinds of info did you have to provide in the appeal? I'm trying to make sure I don't forget to submit anything.



Belfast
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23 Feb 2008, 5:06 pm

PlicketyCat wrote:
I didn't want to apply until I had a strong dx. I'll check out the DDD & DVR to see if I qualify for any of their services, especially SSA filing support. My psych and doc are really helpful and supportive. What kinds of info did you have to provide in the appeal? I'm trying to make sure I don't forget to submit anything.

I'm not totally sure, since I didn't physically have my hands on my medical (mental) records-professionals contacted other professionals that I'd seen in past & I signed releases for them to do so.
What supposedly happened was that SSI made decision on basis of what material they'd received, and we didn't know 'til then that there were records that "my people" were going to send-and I'm unsure about which end messed up (whether it was SSI or the clinic I continue to go to for counseling). So, once we (my people) found that out, then they made certain that SSI had ALL of whatever paperwork. My shrink wrote a letter requesting that SSI deem me disabled, listing things about AS & then things about me & saying how precarious & troubled my life was on daily basis. There's SSI booklet of forms to fill in, plus one's expected to provide backup documentation of those assertions (through prior history from contact with mental health providers or the like, such as Voc Rehab). Also, they're interested in statements from a person or two who knows the applicant (you or me) well (in "civilian" life) and the challenges/difficulties one has.
SSI talks about "inability to do gainful employment", "difficulty completing the activities of daily life", and level of functioning-which one can find plenty of info. about, searching online. Again, I'm not well-versed on SSDI, but this is how it was with SSI.


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PlicketyCat
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23 Feb 2008, 10:33 pm

I'm pretty sure that most of the hoops are the same between SSI and SSDI - the big difference is what government bucket the money comes out of. I have appts with my pysch and pcp this week, so I'll talk with them about the process. I know my psych has worked with other AS patients to qualify for benefits. Meanwhile, I'll check out DDD & DVR... the worst that could happen is that I don't qualify for their aid.

Thanks for your responses everyone. I definitely feel less stressed about the whole process now.