When Congress returns from Thanksgiving recess, the work to tie up loose ends from the current legislative session will begin in earnest. Key legislative priorities for The ALS Association could be included in lame duck sessions, including increased funding for ALS research, the ACT for ALS Act, and an end to the five-month waiting period for people with ALS to receive Social Security Disability Insurance (SSDI) by passing the ALS Disability Insurance Access Act.  

The ALS Association and its nationwide network of advocates have been working with Congress to end the five-month SSDI waiting period from the beginning, bringing thousands of advocates to Washington, D.C. every year and hosting hundreds of meetings with members of Congress. This year, when the COVID-19 pandemic made in-person meetings impossible, our advocacy efforts moved online as advocates held more than 350 meetings with members of Congress.  

So as we look ahead to the lame duck session and the possibility for an end to the five-month waiting period, we look back to a guest blog post written by ALS advocate Mary Johnson to remind us why this fight has been critical to the ALS community.  

Meanwhile, for an update on Act for ALS and a push from Senators to double funding for research at the Department of Defense ALS Research Program, listen to a recent discussion with Sen. Lisa Murkowski (R-Alaska) on Connecting ALS.  

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By Mary Johnson, Caregiver – Western Pennsylvania

The five-month waiting period for Social Security Disability Insurance (SSDI) after an ALS diagnosis has severely impacted my family and I’m mad as hell about it. There’s absolutely no reason people with ALS shouldn’t be getting both SSDI and Medicare benefits immediately. 

I can tell you from my own experience – we don’t have five months to wait. 

My family has the genetic form of ALS (familial ALS). As of June 2018, I’ve lost 16 family members – siblings, aunts and uncles, nieces and nephews, and cousins – to this horrific disease. 

My 25-year-old niece, Amanda, died four months after her ALS diagnosis – before the SSDI waiting period was met. The same situation occurred for my niece, Shannon, who died at age 34. She was diagnosed in January 2013 and died just two months later. 

Amanda and Shannon still had bills, rent, utilities, and phones to pay for, with absolutely no funds to do so. Both were unable to work, so it fell to us as family to help financially, with the hope that SSDI would provide some financial relief. Then we learned that wasn’t going to happen. 

ALS is cruel and devastating to those who are fighting it every day, yet they worry about their family members carrying the financial burden that the disease has created. 

Let me tell you, we fight their fight for them, but I hate that their biggest concern is feeling like a burden. That’s so wrong on every level! 

The SSDI funds they’d receive if they didn't have this waiting period would let them focus on living and fighting the disease, not worrying about the impact of the financial burden. I can't explain how much of an impact lifting the five-month waiting period would have for those fighting this beast of a disease. 

Shannon left two sons – a 6-year-old and a 13-year-old – without their mom. The SSDI money could have helped her do something special with her kids before she passed. As it was, she didn't want us to incur any additional costs because she felt we were already doing so much. 

I share more of my thoughts in this video: Please watch and share it.