I have a disability and I found a job I love. Social Security is making me pay dearly.

I read the email five times before it sank in. I was offered my dream job at a top university as a researcher specializing in employment and disability. I accepted the offer.

But there was a catch — a $101,000 catch.

Let me explain. In 2013, my father passed away. Because I have a significant physical disability, I started receiving a monthly Disabled Adult Child payment based on my father’s Social Security contributions. When I spoke with a Social Security representative, I was told I would receive those payments for the rest of my life.

As I completed my education, earning a Ph.D. in sociology, I began to figure out what my adult life might look like. While exploring career options, I realized I needed to find a way to keep Medicaid while working. Many working people with disabilities, like myself, use Medicaid to pay for essentials that many private insurance companies do not offer. For example, due to my disability, I need 24-hour care, seven days a week. This includes assistance with eating and dressing.

I cannot afford this care on my own — few people can — so I pay for my personal care assistants using a Medicaid waiver. I assumed that the financial setup recommended by the experts who advised me was good. Although the details vary by state, Medicaid generally limits how much money a person can have in the bank. Certain exceptions are allowed — these exceptions are necessary to save for significant purchases — and the exception recommended for me was to put all my earned income into a trust to fund my many disability-related expenses, since Medicaid does not cover all of them.

I finally settled into the adult life I had built for myself and started digging into my work at Cornell University, researching the barriers that people with disabilities face when trying to find and maintain employment. As recommended, I would place all my work earnings into my trust and then use my monthly Disabled Adult Child payment to cover things like groceries and other essentials. While this situation was far from ideal (what 30-year-old willingly gives up access to her paycheck?), it ensured that I could receive the Medicaid services I needed while supporting myself financially.

This all changed last year, when Social Security abruptly stopped my monthly Disabled Adult Child payment and sent me a notice claiming that it had overpaid me $101,000. Now I cannot even afford my daily expenses, much less this massive repayment.

In researching why I was cut off, I found that my story is far from unique. In fact, Social Security penalizes tens of thousands of workers with disabilities each year by demanding they pay a debt that isn’t of their own making.

The federal government can and must do something about it.   

Social Security’s rules offer disabled people few options. The easiest one is to stay at home, collect a benefit check, and receive disability-specific assistance from the government. For those who want to work, however, employment often comes with a price tag.

Social Security tries to cast overpayments as the fault of disabled worker’s failure to follow the rules. But its confusing communications and antiquated policies create a minefield that can trap even those of us who have studied this for years.

For example, recall that I was told that my benefit would be available for my entire life. But it turns out that Social Security disability benefits like mine are supposed to be paid only to people whose work earnings are below a set amount (typically $1,550 per month in 2024), lower than full-time minimum wage in most states. And the complex rules to transition off these benefits set people up for failure.

In fact, 71 percent of Social Security Disability Insurance beneficiaries who earn above a set amount receive overpayment notices, according to a report from Mathematica Policy Research. Another 2022 report by the Office of the Inspector General at Social Security estimates that it sent overpayments of $6 billion in 2021 and had $21.6 billion in uncollected overpayments.

Just like anyone else, people with disabilities should have the option to work and be financially independent. While the federal government, through laws like the Americans with Disabilities Act, has promised to help people with disabilities become gainfully employed, it continues to penalize disabled workers for taking them up on these promises.

If the federal government wants people with disabilities to work, it must take action. First, Congress must immediately stop the collection of these overpayments. Second, the regulations must be changed to eliminate all income and asset restrictions, at least so that they apply only to the top 5 percent of earners. Finally, Social Security must update its policies to work for people with disabilities rather than penalizing them.

While these changes won’t eliminate all the barriers that people with disabilities face in the labor market, they will at least remove Social Security’s price tag on work.

Jennifer Brooks is a Research associate at the Cornell University ILR School’s Yang-Tan Institute on Employment and Disability.