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hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
Well, first the good news: My husband received his "award notice" (that is how they label it, award notice!) that his disability is approved. He will receive his first "award" check by December 10, direct deposit, no retro in NJ. And his employer did not contribute to state so nothing until federal kicks in Dec. 10.

Okay, next question? When you go online to SS web site and log in with your PRC number and create your password, they give you options. One was Medicare?
When I click on Medicare, it reads, you are eligible for Medicare 24 months after your first disability payment.

Well, "WE" know that it not so, thankfully the ALS association had Congress pass a law that ALS patients are qualified for Medicare immediately when they receive their first disability payment, presumptive clause.

An inside contact told me one of the questions that could of delayed my husbands disability was and I quote: "THEY ARE QUESTIONING, HOW YOUR HUSBAND WORKED AND THEN NEXT DAY COULD NOT" (HE WAS EXPERIENCING AIR HUNGER AT WORK DUE TO NEEDING BIPAP AND HAS NO USE OF HIS ARMS!) WHO WORKS IN SOCIAL SECURITY BESIDES OFFICE CLERKS? IS THERE A REAL DOCTOR IN THE PLACE THAT HAS ANY IDEA ABOUT WHAT ALS DOES TO A PERSON!

It is very scary! I wonder how many ALS patients or CALS are completely exhausted with our social security system!

I called, left messages, have had my poor husband speak into the phone to leave a voicemail for our Southern NJ Information Specialist, David Delaney, and no reply.
ALL WE WANT TO KNOW IS THAT MEDICARE WILL BE APPROVED FOR HIM WITHOUT US HAVING TO REGISTER FOR THAT AND DO MORE PAPER WORK. IF SO, WE NEED TO GET THAT STARTED. BUT HOW! DO I HAVE TO DRAG MY POOR HUSBAND DOWN TO THE LOCAL OFFICE IN HIS WHEEL CHAIR AND BIPAP TO SPEAK TO SOMEONE IN PERSON, BECAUSE NO ONE WILL RESPOND TO THIS QUESTION!

Someday.......I hope to help the ALS Association with many things in Washington DC
and you can bet this will be one of them! I am taking names, numbers and copying every email we sent with no reply. I will take it to our local Congressman in the next two weeks if still no reply! Someone has to be accountable. Are we not accountable for paying our taxes and their salary in government?

How dare, government employees not return calls or emails. Shame on them! I don't care how busy, or how many calls they get. Something must change.

Thanks for letting me blow steam!

Patty:cry:
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
patty

You should get medicare 1 month bfr ssdi. sorry i can't elaborate rite now. sure someone else will.
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
Patty,

I am so sorry this has been done to you. Please know you are in our prayers for a quick answer on your question. My heart goes out to you and your husband. Sincerely, Peg
 

duplinwino

Distinguished member
Joined
Mar 14, 2007
Messages
101
Reason
Loved one DX
Diagnosis
N/A
Country
US
State
NC
We had a similar situation Patty and I'm really sorry that this seems to be common place with these offices. We could never get an answer when we called. They drug out his decision for months. I finally placed calls to two different Senator's offices and got replies immediately. Wouldn't you know, within the week we had a decision and Medicare, like CJ said, starts one month before payments do.

Please, go ahead and call your Senator's office or send them an email explaining the situation. If there is a clear cut case of ALS, they shouldn't question his ability to work one day and not the next. That doesn't matter!

Good luck to you.
Ashley
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
thanks guys!

Hi CJ, Patricia and Ashely,

Today we called and got through! Yipee! Would you believe, there was a missing link in my husbands ss process and Medicare was not listed in his file to kick in month of disability start. But because we called they updated and he should receive a Medicare card around October and first "award" check Dec. 10 or there about.

Someday.....I will help others with this nonsense but for now have to help myself get through the day!

Take care and God bless and thanks for listening to my belly aching! :oops:


Patty:)

p.s. CJ hope you are having a better day today!
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
Patty,

I would call back again in a week or so and make sure it was updated. Someone else on the forum I can't remember who, was having the same problem and they had to keep calling back because every time they said it was fixed it wasn't. Hopefully it is not going to be your case but I would check on it inbetween to make sure it is in the system.
 
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