Making a Statement


“When are our DFL reps going to jump on the bandwagon and become leaders of this resistance movement?”

“How is the nuclear option going to affect future legislation?”

Those were the questions I was going to ask Senator Amy Klobuchar at her town hall meeting last Saturday.  By the time the staffer with a microphone got to me, my questions had been answered.  So instead, I came up with something more personal.  “7 years ago I was diagnosed with a neurological movement disorder.  I was able to work for the first 3 years and then was forced to go on long-term disability.  Since then I’ve been fighting an uphill battle trying to get approved for Social Security Disability.  For those of you who don’t know, you only have a window of 5 years to get approved for SSD.  Then you’re out of luck.  I have 2 questions.  Who is the Social Security Administration held accountable by, and what will you do to make sure all of us with disabilities get approved for SSD?”

This was definitely the question that got the shortest response of the night. She said her office helps people all the time with SSD claims and that she wanted to hear more about my story to find out what they could do.  She seemed so positive about being able to help me that I thought maybe there was a chance.  One of her staff members came over to me immediately after the town hall and gave me his contact information.

I met with Kurt Johnson today and was disappointed to hear that nothing has changed since I contacted her office in 2015.  The only thing our Congressional reps can or will do is place us on a Congressional watch list. Essentially, our case files get “flagged” by the SSA.  This doesn’t help us move along any faster.  It doesn’t help us get approved.  About the only thing it accomplishes is to make sure we have all of our forms turned in.  I’m pretty sure I could find that out on my own by logging into the SSA website.

The only other possibility is to have a SSD claim expedited.  In order for that to happen, you have to meet one of three criteria:

–          Foreclosure/eviction notice

–          No access to healthcare

–          No access to major utilities

So basically we need to be homeless before a claim is expedited.  How many people actually get helped by this?  How many even know this is a possibility?  It’s frustrating that we have to be in dire straits before a claim gets pushed to the front of the line. “There are a lot of people applying for SSD” was Kurt’s response.  What he doesn’t understand is that many of us feel like we’re in dire straits emotionally and physically all the time as we’re wading through this long process.  The anxiety and stress that are a result of that process make my physical symptoms worse.

As I sat in the senator’s meeting room, I wondered what I could ask them to do.  I’d been on a Congressional watch with this office since 2015 and was never contacted by them about anything. Obviously, that wasn’t working.  I only have one idea, but it’s a biggie.

Perhaps there wouldn’t be such a back log of claims with the Social Security Administration if some of our disorders and diseases were added to the automatic approval list.  I don’t know when this list was updated last, but I do know Senator Al Franken asked for dystonia to be added and was communicating with the SSA commissioner to this effect before he quit in 2012.  As far as I know, the topic hasn’t been brought up since.   This is what I suggested to Kurt.  The senator needs to fight for us to have dystonia added.  Since her colleague already did at one time, it would be good for them to fight for us together.  Other than that, I’m out of ideas, which is why I’m looking to you to see this from a new perspective.  What would you ask your legislators if you were fighting to get approved for Social Security Disability?  If you had the chance to ask him/her anything, what would it be?

What do the questions and answers to these questions say about us?  As for me, I asked about adding this disorder to the pre-approved list for Social Security.  Leaving the Senator’s office without a yes or no answer, I now know I need help.  I need to come together with other people and brainstorm where to go from here.  I need those people to be a part of my support system.  I need to feel like I’m making a difference in my life and in the lives of others.

What do the potential answers to your question say about you?


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