Status
Not open for further replies.

themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
I have been at war with SSI. It is the craziest thing I have ever seen in my life. We have the diagnosis. We have all the testing. We have the orders for the cough assist and ventilator (which Michael has a loaner from the ALS closet), but we can't get disability.

Uhhh, lets see Michael - take off that ventilator now and start working! REALLY?! You F$$%%% Moron! Are you kidding? (Sorry for the language - but I have cried myself silly today and well sometimes - you just have to vent!) And have Sangria - which helps my currently frazzled nerves! :lol:

The attorney had it all the way to hearing stage - then SSI kicked it back to the State of Florida for an INFORMAL remand - so that SSI can re-look at their last denial. And the attorney says that is good.

Noooooo...That is not good! I could have drug the Neurologist down to the hearing and let her testify (she hates SSI - which is one reason I really like her!) And it could be done and over with...But noooooo....It is just another way for them not to pay.

My GOD - I cannot image what it would be like if we didn't have the money to pay for all of the stuff that we need! Uhhh Excuse me ma'am - but we will have to repossess that ventilator that your husband is using to keep him alive....

Talk about taking the wind out my sails. I feel like we are going backwards. I hand delivered a letter to my Congressman today to have them intervene on Micheal's behalf. This is the saddest thing that I have ever encountered in my life. And listen LULU - I have had a tough life! So for this to be difficult - it is REALLY REALLY HARD. And emotionally draining.

I want to stage a march on Tallahassee - with all the students at FSU. I told them I would buy beer - if they would march on the Capital in protest!
If the Congressman doesn't do something - I will take out my wallet - and Mike's Liquor Barn will be the proud recipient of my checkbook and all the kegs they have in the cooler. Seriously - a 1000 drunken and disorderly Frat Boys will get their attention. Trust me - it will be pandemonium before its over. I am just so over it!

Grrrrrrr....
 
What the heck ?! How is that even possible. I mean, I thought having the diagnosis of ALS was pretty much an open and shut case when it came to SSI.

I HATE dealing with anything like SSI, Medicare, Medicaid - hate it all. Nobody tries to truly help.

I'm so sorry, so frustrating.
 
What reason are they giving for denial? That's just not right! I didn't have any trouble getting it.
 
Which Time? He has been denied twice. He was denied from the Compassionate Allowance because SSI wanted to cover their butts. And because his life expectancy was longer than 3 months. Believe that? It is NOT - open and shut in Florida. AND it would be easier if they would TELL YOU WHY it was denied. But they don't come right out and say. THEY MAKE ambiguous statements like - we need more information. WTH? Really?! What more do you need other than the diagnosis from the DR and a dirty EMG?
 
I don't know sweets. It's a law everywhere that an ALS diagnosis is automatic approval. Did you say you're using an attorney? Maybe you need a new one. Good luck!
 
I know, I can't believe you are getting denied - and no reason on top of that. Just ridiculous. We did file in OR so I didn't go through the FL system but wow, I just can't believe that.
 
This is insane! I am so sorry this is happening to you. This is criminal.
 
THANK YOU CJ! I am renewed this morning! You are a life saver. Seriously. I don't know enough about SSDI to be effective at battling this type of situation - but I have now reaffirmed myself to go get em! Thank you thank you thank you Thank you thank you thank you!
 
I don't understand why you needed lawyer because all I did was take my papers in and it was approved. But we do have a lawyer here that will get your disability for you but he will take a long time doing it so he draws more money so about a year later you can expect to get it.
 
I was denied the first time I applied, I had not specified ALS or Amyotrophic Lateral Sclerosis, if I remember correctly I wrote motor neuron disease—which, I felt for me was more accurate. But, Social Security is a bureaucracy and we need to (figuratively) speak slowly and write very clearly without using any variation from expected names for diseases.

When I read through their denial, they had contacted my doctors from early in my diagnostic journey, such as my rheumatologist, but did not contact or request information from any neurologist that I had seen, even though I had provided their names and contact information and what they had tested me for. What amazed me was the fact they didn't even bother to contact the neurologist who gave me my diagnosis. Amazing but true, can't make this kind of stuff up. The letter from them said something to the effect that they felt I was weak but could work at some sort of job (not my career occupation of course)

When this happened, I was advised by the director of the ALS clinic that I attend, not to employ an attorney. I did not check into using one, as she had said they take almost half. Whether or not this is true, I don't know. As you already do have an attorney I kind of didn't want to bring it up, but, on the other hand, if your attorney hasn't gotten you what you want you should owe him nothing.

Often times, if there is a snag, getting your state legislator involved can speed things up tremendously. It did for me, and for others here. Also, call the ALS clinic today and ask for any help they can give, and especially for them to write a letter. Explain what has happened, and get them to help, they will be able to.

When I was denied and refiled, the ALS clinic I go to sent the Social Security office a strongly worded letter very clearly stating (over and over) that I could not work at any occupation and had the medical code for ALS put within the body of the letter repeatedly as well.

So, this time SS kept assuring me that they were going to expedite it, I should never have been denied (duh) etc.. and yet still no approval letter arrived. I went in to the legislator's office of the district I lived in, filled out a short questionnaire, and it probably wasn't even a week later I had my approval, What's more, the aide who was from his office and was the one assisting me with it, called and let me know that the letter would be arriving, because they had already been told it had gone through. So, a servant of the community, even if you would never ever vote for this person in an election is a very powerful ally in a situation such as your husband's.


You should put the medical code for ALS on absolutely every form he fills out, whether it be short term, long term, or social security. Also spell out the words Amyotrophic Lateral Sclerosis, don't abbreviate, don't use the terminology Lou Gehrig Disease.

The code number is 335.20

Social Security has some specific terminology that is used as well. The term "TERI" that CJ was talking about stands for terminal disease. ALS, along with end stage renal disease and a few others, officially are TERI qualified.

Social Security implemented a new program to help speed up the process. It makes provision for those proper documentation, to have their their claims approved in as little as a few days. This is is called the Compassionate Allowances Program. Irregardless of how quickly your husband's claim would be approved, he would still not be eligible for any payments before the 6 month mark from when he left work, or his hours were so greatly reduced that he earned little enough to satisfy them.


I do know the amount he will receive from any of these resources is not negotiable. They are all formula driven, based on his earning history.

Hope this helps, and all the best of wishes and hopes for your husband.
 
Sounds like you should fire the lawyer and hire Rose! good luck.
 
wow! When we got our disability, we when down to the ss office and filled everything out and and got our checks 5 months later. I thought it was a federal law that ALS is automatic and fasttracked. it says that on the website in fact I thought. I am so sorry! you dont need this stress! I will have a big glass of wine for you...
 
I found it very easy to apply on line for SSDI. I completed the forms on Nov 30 and received an award letter in late Dec.
 
Last edited:
Yes something is not filled out right. It is an easy thru for ssdi, ssi was denied for me in Oklahoma, but that is not ssdi. I believe ssi has to do with a poverty level, I was told by the lady at SS that I would be denied for ssi, but not ssdi. She was exactly right. Please hang in there. Talk to your ALS clinic they should have someone that will help you.
 
Status
Not open for further replies.
Back
Top