Don't know how to begin to help

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Kathylund

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Joined
Aug 28, 2011
Messages
87
Reason
Learn about ALS
Country
US
State
Ct
City
Middletown
Hi everyone, I know that it's been a tough week here. I'm so sorry. I was here a couple months ago asking about my own problems, but ironicly, my neighbor has been having many issues for awhile and my husband brought him to the neuro last week who referred him to a ALS specialist who has given him a diagnosis of Als today.

He is only 45, and lives with his brothers. My husband and I are doing what we can to try to help him. He is having much trouble walking and talking. The specialist came right out today and said that he is progressing rapidly.

I have read posts that if you get a written diagnosis you are automatically eligable for ss? Also I would like to know in what direction he should go for help. He will need care very soon. I know he does not have any income as he has not been able to work for months. I looked up our local ALS chapter and thinking that is the place to start?

He is still able to eat and drink so we will be sending over a meal everyday. He is pretty much alone and we want to do as much as we can to help. Any tips on how to start would be appreciated.

So ironic that I have been trying to answer my own questions and now it's my turn to be able to help.
 
He should contact Social Security (get their number on line) who will set him up with an appointment with your local Social Security office. There will be a long form that he'll need to fill out on line, he'll need copies of his diagnosis, birth certificate and drivers license or passport? He will be automatically eligible for Benefits but will have to wait about 5 months to begin receiving payments but they will back date his payments to his date of diagnosis. He will immediately be covered by Medicare or Medicaid, what ever he's eligible for. His first check will be payments for the 5 months so will be quite a large check. Let me know if you need more information. I'm sorry for his diagnosis. Take care!
 
Speaking as someone who has the greatest neighbors in the world, I can tell you that the meals will help tremendously. Pastas work best. Stay away from chewy meats. If he is progressing rapidly and already has speech problems, chances are he will have swallowing issues shortly. My neighbors mowed my lawn - a Godsend. They came over and visited - a Godsend. And, as I said, they brought meals - a Godsend. This fellow is lucky to have you. Introduce him to us!
 
Wow, 5 months! I don't know what he will do in the meantime. He is broke! He is on Medicaid, I wish be would of went to the dr sooner. He is in so much pain. I'm assuming that Medicaid would pay for some type of care? Either home or a facility?
 
Ms pie, will he have to go into the office? Can someone come to him? He is not able to walk very far and has no wc or walker, his room is on the 2nd floor, so many issues! Thanks for the tips guys! You are all so helpful!
 
No, the interview will be by phone. He will have to get his paperwork to them prior to the interview semehow. Maybe someone can drop it off for him. Yes, Medicare/Medicaid should pay for care. Medicare pays for 80%.
 
The 5 months begins the last day you 'work' regardless of the official diagnosis. If he's not worked in months--that will count if it was due to health--I speak from personal experience in getting my SSDI approved.

At the time, they didn't know what was wrong with me, but i certainly couldn't work--and hadn't since a bad fall. So my date of "not working" was long before a diagnosis came--and I was approved 5 months from the DAY I was last able to work.

The 5 months is 5 months from last day worked is what I'm getting at. He can do most of the paperwork via phone and mail--but hand-delivery of all information is much, much better. You can help him with the tons of forms--and there are TONS of forms.

No need to lost part of his benefits on an attorney--he doesn't need one---just help him get all his records and his official diagnosis. They can do a phone interview with him--but I still suggest the papers be delivered in person--they are very slow when they order them, believe me.

So I assume he lives iwth his brothers and they can help care for him? You are correct in who to contact first -- SSDI/SSI should be first order after assuring immediate needs are in place.

Edit to add that the ALS people should have loaner closet that will get him a walker/wheelchair, whichever he needs. He can also apply for medicaid now--while he waits for the Social security to do their thing. A social worker helping the SSDI might expedite it.

With no income, it is very possible that medicaid will pick up the 20% that medicare doesn't pay for items--as well as the Medicare monthly premium.

He should apply for foodstamps and medicaid immediately. Most states have an online method for doing so. Medicaid will approve with no income based on ALS diagnosis, I'd imagine. Usually within 30 days.
 
Patty, thank you. You're right! He should receive a big check in a few weeks! Yay!
 
We got the d x sept 3. And check on oct 14 . My husband hadnt worked since Dec. And we told ss that he had been looking for a job but people thought he was drunk Our 5 month waiting was Jan Feb Mar Apr and May. SSDI began in June.. we got check in oct for June july aug and sept. For your neighbor he needs the doctor to say symptoms began at least 5 months ago. Mrs Pie is wrong about everyone getting a first check for five months worth of SSDI in the first check. That will only happen if you has not been working for the previous 10 months and get the
doc to say you had als at that time

Love u Mrs Pie
 
Thanks for the correction Sadimae! :)
 
Here is the contact information for the ALS Association for your area:

(203) 874-5050 - 4 Oxford Road, Unit D4 - Milford, CT 06460

They should have the equipment that he needs to get started. They will come to him.
 
Katylund,
What a great neighbour you are.

Like Missy said, try and get your friend to come to this forum.

He'll be able to get the advice, tips and understanding he will need.

Casey
 
Thank you everyone for your input, it's a huge help! God brought me to this forum for a reason.
 
So today my neighbor has moved in with his sister who is a rn, I feel relieved. I know he will be well taken care of. We told him about the ss and also gave him the info ALS association. Thanks again guys for your help, I will keep you updated.
 
Wonderful Kathy! You are the one that is God sent. You're a good friend.
 
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