That Time When the Social Security Administration Took Away My Disability Benefits Without Telling Me Why: Part One

A week ago Friday, I put the final touches on an essay for PublicSource and gave it my blessing to be published the following Monday. The topic was social security and I had a teeny twinge about triggering an unwarranted review by someone who sees all the words I create, but doesn’t read them enough to realize what I’m saying about my disabled life. I chalked that up to paranoia.

The very next morning, I received a letter from the Social Security Administration stating that my benefits were being terminated. No reason. Just a reference to an appeal form number and a website. So that’s bad timing, right?

It is important to note a few things

  • my health status has not changed aka improved
  • I am not earning income above the current SSDI limits (or at all)
  • I’ve been receiving SSDI for ten years

Remaining calm, I found the proper form and printed it. Then I completed it.

In the meantime, I spoke with a lawyer who told me which type of appeal process to pursue and advised me to call her back if my appeal is denied as they can represent me in an administrative review. Great. She also told me that I can file a form to request my benefits be reinstated during the appeal process with the caveat that I must repay the federal government if I am ultimately denied. Fine. She also said she would send me the medical releases that I could give to my medical providers ahead of time so they would be ready for those inevitable requests. She told me to file my two appeal forms immediately and then send the medical releases in as soon as possible.

I went back to the SSA website to find that form. I searched high and low. No dice. I finally found a blog (!) describing the process and giving me the term “benefit continuation” to search. Turns out this form has to be submitted in ten days, but can only be obtained at the SSA office in person. It has no number or official government name.

So 10 days to appeal for continuation of benefits during the appeal and 60 days to appeal the termination of benefits. Two forms. Got it. A third from to anticipate medical review requests. Okay.

Wednesday, I began feeling awful and sent a message to my PCP who asked me to come in Thursday morning. So Laura took my completed form to the Downtown SSA office for me. She waited 90 minutes.

They told her it was the wrong form and there was no second benefit extension form, that was an automatic process. A man looked up my case and said it was a medical review. He gave her the appropriate forms. He could not explain why the SSA letter said otherwise. He was testy with her.

He told her if I had submitted the original form, it would have been tossed in the garbage.

Meanwhile, I am diagnosed with the flu.

So I am completing new form and planning to turn in on Monday AM, when I expect to stand in line for three hours wearing my flu mask.


The “right” form is a medical review packet that doesn’t say anything about appeals. In fact, I’ve filled this out in previous years. It is pretty much your standard medical review and update form. And I know that my medical conditon and capacity to work in the US economy hasn’t changed.

I already know SSA won’t give me a receipt for submitting these forms. I am completely at the mercy of the bureacracy that has thus far:

  • terminated my benefits without explanation
  • referred me in writing to the wrong appeal form (allegedly)
  • provided no information in writing about the restitution of my benefits during the appeals process, I didn’t know this was an option until I spoke to the attorney
  • verbally said the paperwork I was originally told to complete would end up in the garbage
  • printed their entire Program Operations Manual System online for their staff, but not the correct information for consumer on how to file an appeal

In the meantime, people have been offering me well-intended but unhelpful advice about how this happened. The top reason seems to be that my blog’s success suggests I could hold a FT job. Now anyone who actually reads my blog content would be caught up on my actual mental and physical health struggles. The other is that I’m being targeted by the Trump Administration for my political beliefs. Both seem rather unlikely although convenient ways to chastise me into silence.

The likely truth is much scarier – the system is actually this broken, unfair, and exhausting. The SSA website is huge, but not intuitive. There’s certainly no category or link or FAQ for “getting a letter without a reason” to guide me. I’m incredibly fortunate to have advisors, some familiarity with these systems, and the time to do the follow up. I’m not exactly thrilled to have to drive Downtown on Monday, pay $15 to park, and wait for hours in a crowded waiting room to tun in my form – especially with a flu diagnosis – but I can do it. And I have a Plan B and C in place. I have all sorts of economic and health privilege in this situation.

I’m not feeling desperate, but I am anxious and worried. This is a frustrating and somewhat humiliating experience. I don’t yet understand *why* my benefits were cut and I may never get that information. So I turn to blogging about my experience to help me process and provide a little glimpse into the disability life.

If you are struggling with disability regulations, I strongly urge you to contact a lawyer. Neighborhood Legal Services is an option. This isn’t fair or reasonable or helpful. It doesn’t feel like much of a safety net. But these are the cards we are dealt.


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