Joan, Jane, David, and "All"...

This thread has been very painful for me to read, much
less participate in.  However, after thinking about it, I've
come to the conclusion that this is a WAR we're involved
in - a war between the Social Security Administration and
the very folks that agency was originally constructed to aid.

Social Security has grown to become be "FORT SSDI,"
and they've circled the wagons around the Fort and are
sough busy fighting off the "enemy" (THAT'S US, PEOPLE!!),
they see coming at them from every direction that they've
totally lost track of the ORIGINAL purpose of the agency.

It took me 3 years, with the help of an attorney, and
culminating in going before the SSDI "Hanging Judge" to
be awarded my SSDI benefits the FIRST TIME I applied for SSDI.

After scrapping by on DDSI plus Medicare for a few years, I
had a unique opportunity to work for Microsoft, in the online
industry as a forum manager on The Microsoft Network, at
a substantial salary, and to do that work out of my home.

For the next 22 months all I did was work (up to 18 hours a
day sometimes), eat (often while at the keyboard), and sleep
at my 7 day-a-week-job.

Eventually, by mutual agreement, Microsoft and I parted
company. I was utterly exhausted, and my PD was on the
march.  I felt fortunate to be able to still fall back on SSDI
since I hadn't worked 36 months yet.  AND, I felt in returning
to work, I'd given it my best shot.

Following SSDI guidelines, as I'd done right from the
beginning, I let the SSA know that I was unable to
continue working.  According to their guidelines, since I
hadn't been worked for 36 months. I was eligible to have
my SSDI benefits renewed immediately.

THAT was over a year ago, and I've been turned down for
SSDI after filing for a Reconsideration, an Appeal, a Hearing,
and a brand new application for SSDI.  I now have a
professional company working for me that handles rejected
SSDI claims as my original attorney, who had worked for a
cut of my original SSDI award demanded a $2,500 retainer
for this second go-round, as did other attorneys I called,
specializing in SSDI claims.

When I got Medicare, I assigned it to Kaiser Permanete - an
HMO - and was able to get excellent medical coverage plus
drugs this way.   I was also able to get a Medicare referred
dental plan with Delta Dental.  Both Kaiser and Delta were
covered under the Medicare umbrella.

After SSDI turned down my applications for resumption of
SSDI benefits, they RETROACTIVELY demanded nearly a
year's worth of my assigned Medicare Kaiser payments BACK
from Kaiser!   THAT meant IF I wanted to keep my Kaiser
membership while I battled SSDI to get my benefits renewed,
I'd have personally reimburse KAISER for the monies that
SSDI had paid them in my name, which Kaiser had had to
reimburse back to Medicare!

I definitely wanted to continue using Kaiser for medical care.
Since they were an innocent party caught up in my SSDI
problem, I cut them a check for nearly $1000, and now pay
a monthly membership fee of $142, instead of the $43 a
month out of my Medicare.  I also pay a $10 co-payment per visit
instead of the $3 co-pay that Medicare assignees pay.  Still,
I'm very grateful to even HAVE Kaiser coverage.

Meanwhile, I'm covered by a private long term disability
insurance policy while will pay me a modest amount every
month until I'm 65.  HOWEVER... the insurer has demanded I
repay them every penny they put out to me IF and when I receive
SSDI once again.  And if I didn't sign an agreement stating I
 would do that, they wouldn't caught up that monthly subsidy to me.

I DID sign (under duress), but wonder how they will respond,
should I eventually get my SSDI benefits reinstated, and they
find they'll have to compete with the other company - the one
who legally represents me in my struggle against SSDI - to get
paid. (meaning I'd get no refund for my own out-of-pocket
SSDI-related expenses at all, and the  other two will be battling it
out for their respective pieces of the pie)

Sooooo.... I await a hearing before an SSDI judge and figure
that's at LEAST another 2 years down the line.  The very
thought of a return appearance in front of one of those SSDI
"nightmare-judges-from-HELL," makes me sick OT my
stomach!!!  Recalling the original SSDI judicial experience, I
break out in a cold sweat and can still recall the miserable
indignity and inhumanity of that experience.

Barb Mallut
[log in to unmask]

--
From:   Parkinson's Information Exchange on behalf of David Blose
Sent:   Monday, August 10, 1998 1:28 PM
To:     Multiple recipients of list PARKINSN
Subject:        Social Security Disability

Jane,
You wrote your story well & I know very well when life is not fair.
Imagine, this is the same system that pays drug addicts because they are
disabled!  My wife, Kat (37) has PD and has stayed at home with our two boys
7 & 11.  Our plan in life was for me to retire from the military & she could
pursue her career.  In fact, she first noticed pd symptoms when she was
taking her first college exam in ten years--she was so shakey she