Finally, a victory with the Social Security office!
Written and posted on March 17th, 2022
This is just a brief post to let you know what has happened recently.
If you read my previous post about my SSI saga, then you already know what is going on. But, in case you did not, or forgot, here’s a refresher. Basically, my income fluctuates a lot, and SSI uses income from 3 months in the past to calculate the current month’s income. Overtime, they kept overpaying me more and more money, and expected me to pay back about $3000 dollars. So about a month and a half ago, I filled out a form explaining why I cannot pay this money back.
I had a phone meeting last week with someone from SSI. The night before the meeting, I got a letter saying that I would not have to pay back the roughly $2000 payment. Then, when I was on the phone, I explained my side of what happened, and calmly stated again that I could not afford to pay the rest of the money. The person I spoke to was actually very nice, and actually listened to me. She agreed to waive the other fees, and I assume that someone actually read my form and decided I didn’t have to pay the more recent money either! This felt pretty awesome.
I asked her how I could avoid this happening again in the future. She said to make sure I report when I am starting and stopping my job (I do that every time already) but to actually go in person since the office will be opening up. She also said to ask them to make a “high estimate” of what I will be making, which will help to avoid as many issues.
Of course, the day after the meeting, there was $332 in my account, when I previously was only supposed to be receiving $10 since I make too much (I know so ridiculous)...So I need to call them tomorrow and be like, hey guys, is this money supposed to go to me or not? I don’t want to end up in a mess again haha.
Both of my mentors were listening in on the call from a video chat and one of them reminded me of a couple of things, but I did it all by myself, and they mostly just listened in the background as I very politely and respectfully kicked SSI’s butt haha. I’m really glad the conversation went well, I was prepared to get a little more assertive but I’m glad I didn’t need to. My mentors were proud of me after the conversation was over, we all shared a happy moment of “yay.”
Someday, I’d love to not have to deal with SSI anymore, but the truth is, right now is not quite the right time. I’d need to be making more money than I currently am, and I would not want to lose my health insurance or my brokerage services (how I get support from my mentors) - more on that in another post soon. So for now, here I am, and I’m doing my best. They don’t make it easy to get off of SSI. Also, they decide wayyyy too fast that you don’t need that monetary support. Even if you make just a few dollars over the limit, they take away your benefits, which ends up sometimes putting people behind again, so they are on SSI longer. Maybe if they actually kept offering support, even as people were working, so they could get traction and then make more money, people would be in a different place. It’s like having a rug pulled out from under you as soon as you are steady.
I think that no matter how much a person is able to work or wants to work, they should be able to do whatever is best for them without feeling bad for the amount they are working (not “enough” or “too much” for what they think a disabled person should be doing. One worry I have is, what if I’m never really able to work what would be considered “full time” for an able-bodied person? Will I always be in this between space where I make too much to receive SSI but barely enough to get what I need (or just a bit more since I know how to live on less)?
This experience proved to me that advocating for yourself can be really powerful, and it can actually get you what you are asking for in some cases. I never imagined when I was younger and wanted nothing to do with disability advocacy (more on that later too) that I would be advocating for my right to work as a disabled person, in a sense, and my right not to be held responsible for SSi’s calculation errors and catch-up. I’m really proud of myself for this accomplishment, and I’m sending all of you who have SSI in your life the courage to stand up for yourself!
