Guest Post: We Don’t Have Five Months to Wait

By Mary Johnson, Caregiver – Western Pennsylvania

Note: Under current law, people disabled with ALS who qualify for Social Security Disability Insurance (SSDI) must wait five months before receiving SSDI benefits. Every person must wait, regardless of the level of disability or how fast the Social Security Administration (SSA) approves their claim.

The ALS Disability Insurance Access Act (S.379/H.R.1171) would eliminate that five-month waiting period for people with ALS to receive SSDI. People with ALS would receive their SSDI benefits immediately after being approved by the SSA.

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 14 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!

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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.

Momentum continues to build for waiving the five-month waiting period for people with ALS to receive SSDI benefits. Currently, nearly 35 percent of Congress supports this legislation. Thirty-three senators and 151 representatives are co-sponsoring the bill. That’s more than twice the support the bill received in the 114th Congress in the House of Representatives.

Ask your members of Congress to co-sponsor the ALS Disability Insurance Access Act (S.379/H.R.1171) today! Help us get people with ALS access to the benefits they deserve right away. Thank you!

3 thoughts on “Guest Post: We Don’t Have Five Months to Wait”

  1. My husband was diagnosed feb 2018, he passed away may 31, 2018! Capital Hill does know the horrow of this disease! I feel the same way you do! I have contacted my congressman a lot of times and will continue to do so! My prayers are with you and your family! Love and hugs to you all.


    1. Thank you so much Lynn . I’m Mary’s sister in law and was married to her brother David and was Shannon’s “Mom”, actually step Mom but she had been with us since just before 2.
      I do believe in this fight and have written so many letters to
      our Congressman and State
      Representatives about this too.
      I’m so very sorry for your loss too.
      I’m so very sorry


  2. Shame on our politicians! What a disgrace. My thoughts and prayers are with those who are suffering and the families members who are caring for them. May God bless you richly and provide the resources to care for your loved ones.


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