Frequently Asked Questions about Accessing Social Security Disability Insurance and Medicare

ALS Advocates

On December 22, the ALS Disability Insurance Access Act became law, waiving the five-month waiting period before people with ALS can access Social Security Disability Insurance (SSDI) and Medicare benefits. On March 23, a fix was signed into law making the bill retroactive for people with ALS who applied for SSDI before December 23, 2020. This law was the result of four years of advocacy by the entire ALS community. Since the law was passed, The ALS Association has met with the Social Security Administration to ensure applications for SSDI are quickly processed and benefits start immediately for people with ALS. Below are some FAQs we are able to answer based on our meetings with the Administration:

  1. What is the effective date for the SSDI waiting period waiver for people with ALS?
    • The waiver applies to any applications received by the Social Security Administration. 
  2. What are the eligibility criteria for people with ALS to receive SSDI?
    • The eligibility criteria for SSDI have not changed. See eligibility criteria here.
  3. What are the first steps people with ALS should take to apply for SSDI?
    • The process for applying for SSDI has not changed, only how quickly a person living with ALS is determined to be disabled and how quickly they get payments. You can apply for SSDI benefits here. Not everyone is eligible for SSDI –see the requirements here.
  4. Is the SSDI waiting period waiver retroactive?
    • Yes, Congress fixed the ALS Disability Insurance Access Act to allow people with ALS who applied for SSDI benefits before the bill became law on December 23 to immediately receive the waiver. The President signed this amendment on March 23. See the Social Security Legislative Bulletin that details the enactment and amendment of this bill here.
  5. People with ALS are eligible for Medicare benefits due to disability immediately following an application for SSDI due to ALS. Please explain what needs to happen once someone qualifies for SSDI so they can access Medicare right away?
    • The process and eligibility requirement for applying for Medicare due to disability has not changed. People with ALS automatically get Part A and Part B the month their SSDI benefits begin. You can learn more about signing up for Medicare due to disability here.
    • When a person’s SSDI application is approved, the Social Security system connects directly to the Medicare system the next day. When SSDI benefits begin for someone with ALS, their Medicare benefits will begin as soon as Medicare is able to process the information. The Medicare program will send information by mail.  
  6. Does the SSDI waiting period waiver for ALS cover any similar diseases, such as Primary Lateral Sclerosis, Progressive Bulbar Palsy and Progressive Muscular Atrophy?
    • No, the waiver only covers people with ALS that are eligible for SSDI.

The Social Security Administration is currently updating its policy procedures and materials for public consumption. This includes updates to to make the SSDI application process as clear as possible. The ALS Association will continue to work closely with Social Security to communicate any additional updates as the process continues.  If you have questions, please contact your local Social Security Administration office by going here. You can also call toll-free: 1-800-772-1213.


Submitted by: Christine H. on Thu, 02/11/2021

Not everyone qualifies for SSDI. You have to have enough work quarters in the 10 years prior to going on disability. You do qualify for Medicare automatically. The SSA originally told me that because I didn't qualify for SSDI, I could not get Medicare disability. This is false.

Submitted by: Jayme F. on Thu, 03/09/2023

Hi Christine!

This sounds like the situation my mother is in. How did you navigate getting Medicare without SSDI?

Submitted by: Debbie B. on Wed, 03/31/2021

This article is more for people with recent diagnosis than those of us who have questions about the retroactive peace. Will we receive a check for the retroactive portion automatically or do we have to do some thing?

Submitted by: Amy L. on Thu, 04/01/2021

Hi Debbie. Please contact your local Social Security Administration office here: You can also call toll-free: 1-800-772-1213.

Submitted by: monique M. on Tue, 05/25/2021

My mother has been diagnosed with ALS she is 76 and currently on medicare part A and B. I have been caring for since she can no longer walk and is having a hard time talking .....she does not qualify for home care services my question is does she qualify for SSDI so that she can get medicaid ? so I can get help to care for her ?

Submitted by: Amy L. on Tue, 05/25/2021

So sorry to hear your mother is living with ALS, Monique. Please contact your local Social Security Administration office here: You can also call toll-free: 1-800-772-1213. Your local chapter of The ALS Association can give you information, resources, and support. Find their contact info at

Submitted by: Tabya J. on Mon, 07/12/2021

Having an attorney when navigating these waters has been invaluable to me. I suggest everyone reading this get one too. Mine is

Submitted by: German R. on Sat, 06/25/2022

I have ALS, and I submit my SSDI application on May 4, 2022. How much is my waiting time to star receiving medicare benefits. Thanks

Submitted by: Amy L. on Tue, 06/28/2022

Hi German, please contact your local ALS Association chapter for help:

Submitted by: Matthew H. on Fri, 12/08/2023

My wife was diagnosed with ALS in March. We finally did get disabilty but they are not wanting to pay any back pay. My understanding was that ALS was a qualifying disease and even know she has had symptoms for more than a year they are only dating it back to March of 2023 but also not paying any back pay. They want to start in January for pay and Medicare kicked in Dec 1st,

Is she not due the back pay?

Submitted by: Miriam B. on Thu, 12/14/2023

Hello Matthew,

Thank you for your question. When you apply for Social Security Disability Insurance (SSDI), you must establish the date that you were unable to work due to a medical condition or disability. This is known as your disability onset date. The date you pick is an important one and can have a significant impact on the amount of back benefits you will receive if any. It’s best you speak to an expert; therefore, I would like to refer you to the Patient Advocate Foundation (PAF) to speak to a Case Manager to help answer your question. They can be reached at 800-532-5274.

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