Most of you are familiar with the NPF's Ask the Doctor/Surgeon/Dietician?
Elliott's story this morning is very scary.
(I'm trying to get more details from him ... e.g. what was the "medical improvements" that prompted this SSD action?)
RE: My concern
Comments?
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Subject: Stress and the Social Secaurity Admin.
From: "Anonymous" <dietitian@forum.parkinson.org>
Date: Thu, 07 Dec 2006 15:41:30 -0500
X-Message-Number: 6
I realize this is sort of off the subject of this forum. But I believe
this may be of interest to your readers seeing most likely a good deal of
them are on Social Security Benefits.
I have had Parkinson's for 6 years now and have been diagnosed for 5. I
take 7- 25/250 Carb/Levo at 8am-10:30am-1pm. From 4pm to 9 or 10pm I need to be supervised. Because I choose to have most of my proteins at my large meal so my medication fails to work until 9 or 10pm. When my meds. are off I can rarely hold a cup of water or even change the channel on the TVremote. My night meds.I take at 7pm-10:30pm and 12am. I have a 7thpill I take if I can't go to sleep by 2pm.
On Nov.4th I recieved a termination of benefits notice from the Social
Security Admin. The termintion notice states my benefits were being
terminated because I am able to work because of MEDICAL IMPROVEMENTS.
The date on the notice was Oct.27. It stated my Medicare benefits were
canceled as of Nov 1st. I recieved this notice 3 days after my medicare
was aready terminatated. The notice states that if I fill out the 10 day
appeal form I will be able to keep my medicare and benefits until the
hearing. So I pulled the form from SSA website. Filled it out and my wife
was there Nov 6 Monday morning to drop it off. Afew days later I recieve 8
medical information request forms. I filled them out and my wife mailed
them out the next day.
Weds Nov.22 A Mr. Clark calls me up and tells me he hasn't recieved
the forms he asked for. I told him I mailed them the next day. Mr.Clark
says if you maied them they would be on my desk. I said I scan and copy
everything I get from you people and I'll print out the forms and have
them brought to you Monday. He said We are open Friday...I want them
brought here Friday morning and if there not here by noon time I will
terminate your benefits. So my wife and daughter were there a 1/2 an hour
before they opened and waited an hour that Friday morning. When they seen
Mr.Clark he said to my wife I am sorry I had them under a pile on my desk
i don't need the forms you brought. My daughter asked if I have my
benefits back now because the 10 appeal. He said NO. We misplaced your
appeal so it wasn't sent in on time. So my wife and daugther came home and
gave me the news. Dec.2 I checked the SSA website to see if I still had my
benefits...NO they were terminated.
Now here I am with Parkinson's...NO benefits...Mr. Clark will not
return my calls as a matter of fact I called him Dec.4 in the morning and
told his answering machine that I would be calling back in a half an hour.
I did. The message on his machine now said I am going on vacation Dec.5 to
Dec.12 so you won't hear from me until Dec.13 if you leave a question. Now
I am ticked off!
The Sat Dec.4 I didn't have anyone to to turn to for help so I
emailed the Govenor of my state and a Congressman. Tues morning I recieved
a call from the Congressman's staff. Nancy said The congressman would like
us to look into this for you. I was more than happy to have them help me.
The govenor even emailed me and said A State Sentor was interested in my
case and would be willing to help. I informed them there was someone
already looking into it for me but Thank you for the offer.
Monday morning I contacted a Legal center for low income and free
service for the poor. I recieved a call from this wonderful women. She
seemed upset when I explained my case. And she stated she would be happy
to handle my case.
Dec.6 I called the main number to the SSA and asked them if they
could check to see if my benefits are restored. By GOD they have been
restored until Jan.1. From what I understand the SSA gives you 1 month
benefits after the termination of benefits. No one at the local SSA office
told me that!
So here I am today Dec.7 waiting to find out if my wife and I will
end up homeless and me with no medication if my appeal hearing goes bad.
My problem is not that I am not able to work. When my medication does work
for an 1 or 2 at times. It is never reliable as we all know it works when
it wants to. I don't know who would employee a 51 year old man who may be
able to work 1 or 2 hrs at a time with hours he is not sure of. This
decision the SSA made is a DEATH sentence for my wife and me. My wife was
diagnosed with Schizphrenia 24 years ago 16 months after my twins were
born. I have been taking care of her and her dealings with the infamous
SSA for a long time. But as my disease progresses I find less time that I
am able to do things I need with my hands. I am down to about 4 to 5 hrs
in the day were I am some what functionable. And I have about 3 to 4 hrs
during the night.
This is the part that has something to do with this forum. With the
amount of stress that I have now I find my meds.are not lasting as long. I
am haveing severe bouts of anxiety and some depression. I am very
anti-med. I don't believe in popping a pill for every little pain. Mainly
because once you are taking a med. the goverment comes a long and does
something like this and then you are left with dangeropus withdrawl
symptoms...no money and no medical and no help.
So the moral of my story is...if your ill you better be healthy
enough to defend yourself. You better not have a diminished mental
abiltiy. You better know how to reach out to the right people. And if you
have Parkinson's you better have enough control to type!
Here are the mistakes that the SSA made in my case...
I didn't not recieve the 3 month notice of review. The date on the
termination notine was changed. Under the white out under the Oct.27th
date was Sept.12. Which left me 1 month to handle this problem. They lost
my 10 day appeal. Mr.Clark misplaced my Medical information forms but
found them 2 weeks later. Mr.Clark would not return any of my calls then
went on vaction leaving me with out a recoarse. And they terminated my
benefits with out having me see a second doctor for there decision.
Now that is where I am today....Dec.7 2006 Elliott
*********************************************
Dear Elliott,
This is unconscionable on the part of Mr. Clark and the SSA. Please - PLEASE - summon up all your strength and again contact your governor and Congressman, and if possible your local newspaper. State your concerns once more and ask for their help. If your neurologist is willing, s/he should be able to corroborate the erratic nature of PD and its medications and the effect this has upon your ability to perform your work.
I will keep you in my thoughts and prayers, and hope that justice will be served in your case.
I have little information on Social Security issues, but I will separately post what I do have. Write back and let us know how you fare.
Best regards,
Kathrynne Holden, MS, RD
--
For a Parkinson Tip of the Day visit:
http://www.nutritionucanlivewith.com/