Yesterday my husband was diagnosed with ALS

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lostnsavd

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Hi Everyone,

I am new here and really, I don't know where to begin. My husband was diagnosed yesterday with ALS. He was denied SSI last year at his hearing by the judge and so now it is in appeal and won't be heard until 2015. The hospital where he was diagnosed is a charity hospital and that was the only way he could be seen by a neurologist and have tests done. I myself am disabled, so I need to know what services are available to help us? Thanks so much.
 
So very sorry. I just looked it up and it seems you can file a new claim for ssdi after being denied. They don't recommend it becaise they say you will just be denied again but a solid ALS diag nosis should get you approval under the so called Teri program and then he wpuld get benefits including medicare after a 5 month waiting period. It says you must go in in person because you already filed once
If he is a vet there are incredible benefits
And call your local als association and see what resources they have
 
Last edited:
So very sorry. I just looked it up and it seems you can file a new claim for ssdi after being denied. They don't recommend it becaise they say ypu will just be denied again but a solid ALS diag nosis should get you approval under the so called Teri program and then he wpuld get benefits including medicare after a 5 month waiting period. It says you must go in in person because you already filed once
If he is a vet there are incredible benefits
And call your local als association and see what resources they have
Hi Nikki J,

So nice to meet you. My husband will be 57 next month. He is not a Vet, so he isn't entitled to those benefits. But you certainly gave me a lot of great information that I needed. Thanks so much. He had already been denied SSI a couple of years ago, then went before the judge with representation from a lawyer and was, denied. Go figure. I am sure however, via his neurologists reports that his appeal will be heard sooner rather than later.

I will certainly look into finding a local ALS association and see what resources they have available. Thanks again. You input is very much appreciated.

lostnsavd...
 
I've always understood that you usually DO get turned down on your 1st try for SSI as a sort of sifting process. I know my former wife got hers on her 2nd try in court even though nothing big had changed for her in between her appearances.
 
So sorry to hear. SSDI and SSI are different programs. SSI is based on your family's income but SSDI is based only on your work history. If your husband has worked in the last 5 years he should apply for SSDI under the TERI provision. He would then also be eligible for Medicare in 5 months.
 
Contact the ALS association ASAP they work with foundation of lawyers who specialize in 7 different deceases ALS is one of them. I had to use them when I was denied SSI. It's a free service and will take care of the appeal beginning to end. Fo me I had my decision reversed in 5 weeks. So sorry you have be here but we a full of good information
Patrick
 
My PALS applied for SSDI and was approved in two weeks. He was unemployed at the time and had never applied before. We were surprised when they asked when his symptoms began. He told them he'd been having symptoms for 8 months and thats what they used for the date of onset. They subtracted the 5 months from the 8 and gave him a big first check for 3 months. It was good, he really needed the money.

I hope your hubby gets approved quickly.

Laurie
 
Welcome to the forum! I'm sorry you have to be here. You've gotten some great advise already. Come back and let us get to know you

Lynne
 
Hi!

My husband had applied for SSI (He is not eligible for SSD because he has not put enough into the system and lacks 3 years). He had been self employed and had a fabrication business. He was refused SSI as we expected. We then hired an attorney out of Georgia who represented him and his claim was heard before the judge who 'refused' him SSI. We then had to appeal her decision which is scheduled for 2015. This is so ridiculous! Yesterday, when speaking to the neurologist who performed EMG tests and others, he told us that my husband WILL be receiving SSI as he has ASL. Our system FAILS those who are legitimate. So, even when my husband does receive SSI, he is not entitled to Medicare. I don't know if there are agencies that can help us with his needs.

And I just want to thank everyone so being so kind and thoughtful with their answers. It means so much to us. You all are a blessing.

Thanks again,

lostnsavd...
 
Patrick,

Thank you so much for your valuable information. I will call them in the morning.

Blessings,

lostnsavd...
 
Hi Lynne,

Well, I guess none of us ever expected to wind up in an ALS forum. :) But, I am so thankful for the information and kindness from everyone. I guess this could be called the "ALS Family." Thanks so much.

Blessings,


lostnsavd....
 
Lostnsavd, this forum has been a blessing to me and my husband. So sorry that you are here but the information you will get is amazing! I hope you can get the SSI issue straightened out soon.

Prayers,
Kaye
 
Thanks so much Kaye,

Yeah, I too pray that the SSI issue gets straightened out. We've been living on my pitiful SSD and every little bit helps. Our prayers to you and yours as well.

Blessings,

lostnsavd...
 
I'm so sorry to see you here. Please do reach out to the ALS Association. They have been so helpful to us and many others. I hope y'all find the local support that you need.
 
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