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Distinguished member
Mar 14, 2007
Loved one DX
I'm getting a lot of mixed messages, different stories, and need some help from those who have experience. Progression is picking up speed and dh was recently let go from his job, etc. etc. All of that is too long to go into.

It is my understanding that with the ALS diagnosis he would be approved quickly for SSDI. His doctor, who he had a visit with yesterday, will support him 100%, anything he needed to go out on SSDI but DH is still milling around with the idea (pros and cons, worried about boredom at home, etc.)

Do ALS patients still have the 5-6 month wait?
How does the supplemental income work if there is a wait?
Can DH work part time (limited income) and still draw SSDI?

I'm sure I'll think of more but that's what's swirling in my head at the moment.

Have you tried searching above under ssdi. There are quite a few threads there that may answer some questions.
he shouldnt haave 2 wait. i was told als patients dont have 2 wait if he has work with in the past 5yrs. i didnt qualify b/c i havent work 4 over 15 yrs
I don't know how the SSA treats ALS, but my wife is on it (a paltry 700/mo). She has a terminal brain disease and they denied her first saying she could still work. She couldn't even drink a cup of coffee without spilling on herself. I was livid. I immediately appealed and gave them a big piece of my mind (and I don't have all that much to give:-D). My system has worked at SSA for 30 yrs. (which she says is ASS backwards:-D) and she says they usually deny first as a matter of course. cukita99 is right you have to have worked in the last 5 years. Good Luck and don't take any crap from them.
Dear Ashley,

Here is the SSDisability website that talks about ALS and gives it the description under the diseases that are paid out immedately.


If there is a clear DX of ALS there should be an immediatle response. I am looking for what is called the TERI Laws that assist with this. I used to have a copy but it is on my lap top which I gave to my daughter. Others may have information on this. I am on LTD and have been denied because I do not have a definate DX at this point. I do have a lawyer who is pursuing the issue for SSDI, which is the same for qualifying purposes. I will keep looking for the TERI Laws and will write back when I find them. Best Wishes, Peg
if you have a diagnosed of ALS you will be immediately approved for ss disability under the terri law ( terminal illness). you will still have to wait 5 (really 6) months after you are approved to receive payments. you will get medicare one month before the disability payments kick in.

you need all documentation to take with you. look on ss website.

PALS can work up to limit, prob depends on state limit. As far as supplemental income - you would have to have "nothing" to qualify. Well that's in Georgia. It amazes me how it differs from state to state!

It really is a maze of @%&* you have to continually go thru!
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Hi again,

If you have not already applied for benefits - I started my application on line and then went to the office to turn in more information. Starting on line gave me as early as possible a date from which to recieve benefits and taking the paper work to the local office, in person, got me more help with giving them more information and lettling them see me. You will need an appointment. The can help you. My friend got her benefits right away and most people don't. She does not ALS but is very disabled.

If you have questions after viewing the SS website. This page may help as you can talk to someone over the phone. Here is some information on the TERI laws - please see the page at the second address (section C), but do not limit your search. SS webpages are packed with info. Best Wishes, Peg
I would start on the disability application right after receiving a diagnosis. We waited because we had heard mixed stories about SSDI/Medicare, and then I had to rush the application for my mom. Fortunately, a very nice person at the Social Security office pushed the application through really quickly. Even if you don't have an ALS diagnosis, a general MND diagnosis (including PMA and PLS) should qualify you for disability. If they try to argue you on it, hand them a print-out of the disease description from the government's National Institute of Health website. And the more doctor's reports, test results, etc....the better!

Benefits are determined based on the date that you stop (or significantly decrease) working, rather than the date of the diagnosis. My mom got a huge first check to cover the time before her official diagnosis, and Medicare was also back-dated. I don't know how the payments are determined if you are still working, though.

Why go on it ASAP? Certain facilities/treatments/equipment are easier and more flexible with Medicare than with insurance (depending on your policy, if you are on insurance). Also, get to know a local pharmacist. He/she will help you figure out what Medicare will pay for, even if you aren't on the prescription drug benefit. For instance, nebulizer medications and Jevity are covered under Part A or B (I'm not sure which). If an in-store pharmacy can't give you the Medicare price, they should refer you to a mail-order distributor.

One other tip: monitor the claims and bills that you receive from Medicare. Our statements are coming through Cigna--apparently that company manages government insurance. Read every claim that is filed to make sure that your suppliers aren't charging for things that you don't receive. And you will be shocked by how much these suppliers will try to charge for stuff. One month of my mom's nebulizer rental is more than the cost of *buying* a "gently used" one (and her equipment is all used--some of it not so gently before she received it). Of course, Medicare pays one-fifth of the billed amount, which is a more reasonable cost (but still more expensive than buying a used machine).

A final piece of advice: if you get a power chair funded through Medicare, get the top-of-the-line. You are only allowed one for every five years. It takes forever to get a custom chair, and Medicare won't process it if you are in the hospital. This is one major reason to hurry up and apply--you never know how an extended hospital stay might affect your equipment processing.
I was told by a DME company rep that most insurance plans pay for much better power chairs than Medicare does. I have Blue Cross Blue Shield and this man advised me to keep it as long as I can and to get as much of the equipment as I'll need while I still have it. Haven't had to get anything yet but I am looking into a speech generating device so I'll see how that goes.
Ashley, I do remember this much that when my son was given the final diagnosed, his doc told him that he could get on disability right after diagnosed. He was told that he could take care of everything right after leaving the doc's office, but my son chose to go the next day, because the bad news were too much for him, and he just needed to get away from that place. It didn't take long at all, his social worker helped him with all his paper work. It kicked in right away. Talk to his doc, and ask him what needs to be done. Good luck, and God bless!

I was told by a DME company rep that most insurance plans pay for much better power chairs than Medicare does. I have Blue Cross Blue Shield and this man advised me to keep it as long as I can and to get as much of the equipment as I'll need while I still have it. Haven't had to get anything yet but I am looking into a speech generating device so I'll see how that goes.

You can keep your insurance and go on Medicare at the same time. Medicare paid for 80% of my mom's power chair, and her insurance paid for the other 20%. She has a very nice Pride Quantum 6000 that was customized to her specifications.

Oh, and if you have to pay for some of the chair yourself, the Muscular Dystrophy Association will give you $2,000 beyond what your insurance pays. We didn't have to go this route, though.
Not all insurance can be continued once a person has Medicare. Mine is a group plan through my employer and I have checked. It specifically states that coverage will end when a person becomes covered by Medicare. So each person should check and see if he/she can keep insurance when on Medicare.
Thanks everyone, I truly appreciate all the advice! I'll keep you updated!
someone please help us with SSDI

i went to the ssi office and had the report from u va with me with the diagnosed, they asked me a bunch of questions (beginning of dec '07) and i got approved in one month, but my first check won't come until june, and they send me medicare card with a and b that becomes effective may 1.

pam, when you go to u va see this guy kenneth cady, he is a social worker and he can help you, i saw him when i went to the clinic at the fountaine bldg.
Thanks Dona Jean. I will ask to see him when we finally get to UVA.

Take care.
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