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Author Topic: A disability nightmare  (Read 3397 times)

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Offline koderkev

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A disability nightmare
« on: March 14, 2009, 06:18:21 PM »
First off, howdy to everyone!  I just registered, so I'm a noob.  ::)  Thought I would post my own story with disability, since it might be helpful for someone.

Lost my first husband in '91 to AIDS encephilopathy.  Suffered a bout of pneumonia shortly after that (I wasn't taking good care of myself in my grief) and in '93 filed for disability and was almost immediately approved (unlike some others I knew of that had an endless battle of appeals).

Met my second husband in late '95 and we decided to try the "work trial" period to try to get our real lives back.  This was shortly after Crixivan and other drugs were approved and we were doing very well medically.  I actually made it off disability but my other half didn't, he had problems holding a job and went back on disability. 

Some time after that, my own situation changed and I had an attack of pancreatitis and was having problems with low energy and depression.  I refiled for disability and was denied (thanks Mr. Bush).  I waited 3 years for an appeal and the judge (flown in from somewhere else because our local workload was so high) didn't spend much time on the hearing, seemed to not know that Nurse Practitioners were able to write prescriptions and were caring for HIV Poz folks, and found against me (6 months later I got the notice). 

My Legal Aid lawyer said he didn't respond to all the alleged illnesses, otherwise I would have qualified, so we are now filing another appeal.  This appeal is against his not following the rules, not my condition, so we will see where it goes.  But at this point I've been in limbo for 4 years and still counting.

Any ideas for coping would be appreciated.  I'm at my wits end.

kk

I distrust morning people largely because I suspect them of getting together one morning and setting up the rules of civilization while the rest of us slept.

Offline dgr20002

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Re: A disability nightmare
« Reply #1 on: March 14, 2009, 11:34:55 PM »
I am curious to know how you get by at all after 4 years?

I have rent to pay and all the other things life throws at me and I have thought about a disability scenario, but if I were denied and had to wait 3 or more years for appeals I don't know where I would be since it's just me in the world with no family to rely on.

David

Offline Dwayn20

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Re: A disability nightmare
« Reply #2 on: March 15, 2009, 06:22:20 PM »
What ever you do don,t do what I did when got denied the first time an gave up. Then a few years later I found out I was NOT TO GIVE UP.I know it,s hard but your entitled to it.Yes is a nightmare but remember you have a lot of people who have your back even if we are in different towns.Never back down!!!Dwayn20 AKA (Scooter) ;)

Offline leatherman

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Re: A disability nightmare
« Reply #3 on: March 16, 2009, 01:46:59 AM »
but if I were denied and had to wait 3 or more years for appeals I don't know where I would be
quite a few people I know that have received disability (for various reasons, not just AIDS) have gone destitute during the up-to-3-yr process. Usually they have ended up in a single-room housing facility or such to stay off the streets.

Though it's nice to get that big first check after your approved (back-dated to the start of the application process) usually you're so far into debt most of your money is spent repaying friends and family for their help over the last few years and trying to get out of your miserable housing and into a place you can call your own.  ;)

that's how I got my housemate. ;) After 3 yrs filing and appealling, his disability was finally approved. After repaying his mom and brother, he had just enough to move in with me (i've been on SSd for several years) and out of a miserable, smelly, drug-riddled single-rooms public housing facility located on 4th street and aptly named "the Downtowner". Now he has a monthly income that pays his portion of the bills, lives with me and my doggies, receives his monthly meds, just got himself a kitten, and is sooo much happier after the last 3 miserable years of living at sub-sub-sub-poverty level.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline BT65

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Re: A disability nightmare
« Reply #4 on: March 16, 2009, 07:41:08 AM »
Though it's nice to get that big first check after your approved (back-dated to the start of the application process) 

The idea that you get approved from the date of the application is not necessarily true.  The board at the disability determination office decides on the date they believe a person became disabled and that's not always the date of application.  Sometimes it's further back, sometimes not that far back.  It's all up to the determining board.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AndyArrow

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Re: A disability nightmare
« Reply #5 on: March 16, 2009, 10:26:22 AM »
I know in my case it was determined I was disabled a few months before I started the application process -- although my situation was different from most people here since I got my disability from RRB and not SS.

I just want to say welcome to the forums kk.  I wish I had some good advice but I can do is hope that things get settle for you soon.  Good luck with your appeal.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline lipoenvy

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Re: A disability nightmare
« Reply #6 on: March 17, 2009, 01:48:51 AM »
Yes, this is a nightmare.  I don't have any concrete suggestions other than to repeat the above advice to stick it out and not give up.

My own little battle with Social Security began with going back to work part time - going through the Trial Work Period, figuring out that "working while disabled" was the best choice for me - and over-reporting my income, resulting in SSA discontinuing benefits.  Even after I understood the rules more clearly and corrected my reported income, it took several months for them to acknowledge that my benefits should not have been terminated, and six months after that decision (!) to get around to paying me.  Payment followed suspiciously close on the heels of me getting legal help.  Probably just a coincidence.

But you're already working with Legal Aid.

Good luck.  Don't take no for an answer.

lipoenvy

Offline leatherman

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Re: A disability nightmare
« Reply #7 on: March 17, 2009, 02:07:44 AM »
resulting in SSA discontinuing benefits.  Even after I understood the rules more clearly and corrected my reported income, it took several months for them to acknowledge that my benefits should not have been terminated, and six months after that decision (!) to get around to paying me.
Four years AFTER I had quit working part-time and had been reporting my income, SS notified me that they had overpaid me for certain months as I had made too much. For three years now they have been retaining 1/3 of my monthly check to repay the overpayment. My three-yr period just ended this month and next month I will finally start receiving my full monthly check again.

It's going to be like heaven. With my cig smoking, I was living on $4k a year. With my full check amount and the money saved from not smoking (it's now Day 50 without a cig ;D), I'll be living on over double that at $9k this upcoming year. WooHoo!

I'm never going to try to work part-time again - I learned my lesson ;) The only difference in my life while working was that I was able to afford cable TV and the internet. For that little of a benefit I lived sub-sub poverty for 3 years and lost two cars and two homes due to my financial situation. It sure didn't help that my partner passed away in that same time period either. Thank god I didn't lose my medical benefits, cause without the meds I surely would have died.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline koderkev

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Re: A disability nightmare
« Reply #8 on: March 17, 2009, 07:37:11 AM »
I am curious to know how you get by at all after 4 years?
I'm living with a family member who is basically supporting me.  My partner passed in July of last year, but prior to that we were living off of his disability.  I've been very lucky to have support like I have, I know some do not.

kk
I distrust morning people largely because I suspect them of getting together one morning and setting up the rules of civilization while the rest of us slept.

Offline Mokie143

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Re: A disability nightmare
« Reply #9 on: March 20, 2009, 04:06:54 PM »
Hello Everyone I am new here. :)  I have been poz for 28 years.  I lost my first partner in 1992, still seem like yesterday.  He was a great man and will always be with me.

I have been on disability since 1996.  There have been many time I have wanted to go back to work.  My doctor says if I do I will never get back om disability.  When I applied in 1996 I had no problem at all.  Now I hear it is very hard to get even if you are sick.

Offline BT65

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Re: A disability nightmare
« Reply #10 on: March 20, 2009, 09:27:51 PM »
Mokie, welcome to the forums.  I hope you participate more.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Peter Staley

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Re: A disability nightmare
« Reply #11 on: March 21, 2009, 07:21:03 AM »
Mokie -- welcome!  Glad you found us.  Always nice to meet another long-term survivor as well.

 


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