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Dec 26, 2006
Loved one DX
For those that have applied for Medicare disability -

Once you applied how long did it take for money to start coming in?

Is it retro'ed back to when you applied or do they give you a start date 5mo from application?

How long did it take for Medicare A & B to start?

I have read that the 2yr wait for medicare is waived for those with ALS but the 5mo wait for disability to start still applies.
I first applied in may 2006, in sept 2006 i got a diagnosis of Als. they made SS retro back to june 2005 because the dr verifyed that was when my symptoms started. they took 5 months off so my disability started in nov 05. I got my 1st check in nov. 07. the medicare was also retroactive.

My husband applied in April 07 and was approved but did not get any retro pay at all. We thought he would get it back to at least 09/06 when he was diagnosed, but did not. I think it depends on the office or maybe the state you are dealing with. His disability payments began 10/07 and Medicare began 09/07. They said he was not truly 'disabled" until he quit his job and that is why no retro pay. I've heard all sorts of different stories.

Nothing has been easy for my husband when trying to obtain benefits that are available for the disabled. Maybe because he isn't in a wheelchair yet, I don't know...

Cherilynn did it the right way by applying right away. Good luck!
Retroactive pay will only go back to the date of application.

PALS are supposed to be awarded benefits immediately because they come under a category of Presumptive Eligibility. Those having trouble getting benefit awards may need to make sure the paperwork submitted by the doctors clearly indicates the diagnosis and/or ask to speak with a supervisor at the Social Security Office since not all front line case examiners are familiar with the presumptive eligibility rule.

If you are denied benefits, you must appeal the decision immediately or you lose your original application date. If you reapply later, you will only get retroactive pay back to the date you reapplied. If you appeal the initial denial and win (which you will if you have ALS), you will get retroactive pay back to the original application date.
My caseworker said that my benefits would be retroactive to my original application date of 2003 even though I cancelled it and went to school to try and change my job instead, so it can be retroactive even if you are denied or don't follow through. I reapplied in June 07 and received payment by October without any hassle at all.

I was surprised but it apparently has to be a final DX to be automatic. I was diagnosed with ALS last October, but then with - it is either "Atypical ALS" or "MMN" and SSD has completely ignored the ALS part and only responded to the MMN even though I have Atrophy and MMN is not "curable" either. I have had symptoms since 2002 and had to stop working in Nov. 2006 after 36 years. I applied for SSD April 2007, was turned down, and got a lawyer in the summer. He says I have a case that might just be OK'd by a judge without a hearing but I have not been assigned a judge yet. When :-D I get it, it will be retroactive to April.

I share this as another senario. I know I am very blessed. Take Good Care, Peg

Sorry you are having to go through such a hassle!

Like I said, I've heard a ton of different stories. There seems to be no set rhyme or reason on how the decision is made. Maybe it depends on the office or manager you are dealing with as to how much compassion is passed out!

So nobody count your chickens before they're hatched! You may be crest fallen in the end to add to everything else.

I have to say though, that the SS part was the easiest thing we've dealt with so far in trying to obtain benefits for my husband.

We are currently trying to get a property tax exemption in our county that is available for the disabled. Guess you have to already be dead to get it. It ain't much, but it's the principle of the thing!
Hey Jimmercat,

Thanks for writing in. Sometimes I forget where I posted and need to go back and look. I asked about a disability tax break in our county and there is not one. Good, Good Luck on that one, I hope it works out.

Thanks for your reply on the SSD. I know better than to count my chicks... but I did really, so that is good advice. I had had plans to retire, had found a new job the Friday before I was first DX and that day was called for a possible part time teaching assignment at a major University where I was working on my PhD. I had to tell him I was just diagnosed. YIKES! So the point is I always had choices until I did not. and I got in the habit of always looking ahead. Now it is one day at a time and I really do like it. But as you know it would be nice to get all of this stuff settled.
But it will come. God Bless you and Thanks again, Peg
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