hopingforthebest
Distinguished member
- Joined
- Feb 20, 2007
- Messages
- 355
- Diagnosis
- 02/2007
- Country
- US
- State
- NJ
- City
- Mays Landing
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
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