Category Archives: ssdi

Getting PALS the Help They Need FASTER!

ALS is an incurable disease at this time. When a patient and family is dealing with ALS, the last thing they should have to do is wait for financial and medical assistance. Currently, Social Security Disability Insurance (SSDI) has a typical 5-month waiting period for patients with ALS (PALS).

On Thursday, Feb. 16, Congressmen Seth Moulton (D-MA) and Peter King (R-NY) re-introduced The ALS Disability Insurance Access Act, bipartisan legislation they spearheaded to ensure that amyotrophic lateral sclerosis (ALS) patients are provided vital support and benefits in a timelier manner. The legislation would waive the Social Security Disability Insurance (SSDI) five-month waiting period for people living with ALS, commonly referred to as Lou Gehrig’s Disease.[1]

Many PALS are often diagnosed after they experience significant health deterioration and symptoms.  After dealing with the shock of this devastating diagnosis, PALS have to then apply for SSDI, which can be a lengthy and timely process. The ALS Association reports that fifty percent of all PALS succumb to their illness within 16 months of diagnosis.  The waiver of this 5-month waiting period to get sorely needed resources in an expedient and timely manner is critical.  “This legislation is especially important for people with ALS, for whom five months can mean the difference between life and death,” said Barbara Newhouse, President and CEO of The ALS Association.

The waiver implications go beyond just financial support. Medicare coverage is tied to the onset of the approval and start of SSDI.  The waiting period not only stalls much needed financial assistance to PALS and their families but also medical coverage for very costly care and potential medications.

We need your help to get this very important legislation quickly passed. You can send an e-mail to your members of Congress and personalize it with your story. Please urge your members of Congress to co-sponsor H.R. 1171/S. 379!  You can click here to send your support via the ALS Association website.

To track and monitor the status of this very important legislation you can visit the bill status on this website:

Please see an excerpt of the bill here:

Bill History in the Congressional Record

Page numbers for legislative actions on this bill link to the Congressional Record. Learn more about the History of Bills and Resolutions.

From the Congressional Record, Volume 163 (2017)

——————————————————H.R. 1171–A bill to amend title II of the Social Security Act to     eliminate the five month waiting period for disability insurance     benefits for individuals with amyotrophic lateral sclerosis (ALS);     to the Committee on Ways and Means.  By Mr. MOULTON (for himself, Mr. King of New York, Mr. Bilirakis, Mr. Blumenauer, Mr. Cicilline, Ms. Clark of Massachusetts, Mr. Cohen, Mr. Conyers, Mr. DeFazio, Ms. DelBene, Mr. Engel, Mr. Garamendi, Mr. Heck, Mr. Jones, Mr. Keating, Mr. Kilmer, Ms. Michelle Lujan Grisham of New Mexico, Mr. MacArthur, Mr. McGovern, Mr. Peters, Ms. Pingree, Mr. Pocan, Miss Rice of New York, Mr. Richmond, Mr. Ruppersberger, Mr. Ryan of Ohio, Mr. Schiff, Mr. Sessions, Mr. Tonko, Mr. Walz, and Mr. Swalwell of California), H1300 [16FE]

If you need additional information on the bill or getting help read the original article form the ALS Association here:

Please get involved today to CURE ALS and help PALS and their families improve their quality of lives.