Not even a week has passed since I was told I had my nighttime PCA hours back. Now, I have another hurdle to deal with. I found out yesterday that I owe the Social Security Administration more than $1,000 due to an overpayment that occurred last December.
To say this knocked the wind out of me would be an understatement. It’s the kind of news that leaves a knot in your stomach, not just because of the number, but because of what it means. I thought I’d finally had a moment of stability in one aspect of my life when yet another agency steps in and reminds me that it’s never easy when you’re disabled and dealing with systems which weren’t designed with you in mind.
The more painful part is that this goes back months. The overpayment is from December 2025. It is July 2, 2026. There was no warning, no heads‑up. I only found out because I checked my bank account and saw that my SSI had been decreased.
Not to mention that it comes at a time when I already feel like I’m maxed out. I am trying to manage PCA hours, my own health, and trying to build some sense of stability for myself; it’s all a delicate balance. It is not just a $1,000+ bill; it is frightening. When you get bad news, you’re always expecting something else to go wrong. The more this happens, the more you start to wonder, will I ever get good news?
However, I am not alone. In fiscal year 2022, the agency recouped $4.7 billion in overpayments and had $21.6 billion unpaid, according to a report released by the SSA’s inspector general. It’s not just a few isolated errors; it’s a pattern throughout the system. The same bureaucratic mess is taking millions of people by surprise: disabled people, children, and retirees. It’s not just me. It’s a structural issue that’s taxing people who are already dealing with so much.
The most annoying thing for me is that this has become normal. Sometimes people act like SSI and other forms of aid are luxuries, but they are really not; every dollar comes with strings attached, requirements, and the fear that something bad will happen that you are not aware of and will be punished for.
When Social Security gets things wrong, it is the beneficiaries’ fault. It’s backwards. It’s exhausting. And it’s a burden placed on people who already have more than enough to carry.
There is, however, one aspect of this I hold onto. This isn’t the end of the story. Overpayment by the SSA is a common problem, and it can be corrected. I have already been exploring my options, which include a waiver, reconsideration, or a repayment plan. I’m not about to let this distract me from my progress or from setting goals for myself.
I am reminding myself that I’ve faced more difficult things. I’ve been through appeals and denials, paperwork, and countless phone calls. I’ve spoken up for myself where others couldn’t. I’ve learned to stand up for myself; I’ve learned to ask questions; I’ve learned how to ask for clarity. This is just another chapter in a story that I never wanted to write but I’ve learned to deal with it.
This experience only further highlights my reasoning for sharing moments publicly: because the world needs to know what disabled people deal with. The world should be open, supportive, and give space to disabled people to say: “This is difficult, and it shouldn’t be.”
Sources:
Becker, Ben. “Action News Jax Investigates Uncovers Billions of Dollars in Social Security Overpayments.” Action News Jax, Cox Media Group, 14 Sept. 2023, http://www.actionnewsjax.com/news/investigates/5-action-news-jax-investigates-uncovers-billions-dollars-social-security-overpayments/AK2XN62C7ZF7VFP4YQDEFXYDNQ/?outputType=amp.
Fleischer, Jodie, and David Hilzenrath. “Social Security Overpays Billions to People, Many on Disability. Then It Demands the Money Back.” KFF, 15 Sept. 2023, kffhealthnews.org/news/article/social-security-overpayments-investigation/.