In the LearnVest Personal Stories series, everyday people share the details of their money lives, discussing the individual choices they’ve made and how it’s impacted their financial journey.
Today, one New York woman suffering from two autoimmune diseases tells us how the Social Security Administration stopped her disability payments and started demanding money back, claiming they overpaid her. At one point they billed her for more than $53,000. Now the single mother of two is struggling to make ends meet. Here’s her story.
I’m sitting on my bed right now filling up a three-ring binder, one of those giant ones designed to hold reams of paper. I’ve put more than 500 sheets in it, all from the Social Security Administration, all bills. That’s right—bills.
I have two debilitating, incurable autoimmune disorders and started receiving disability payments from Social Security about 10 years ago to help out my two children and me. Now the agency is telling me that they overpaid us—and that they want their money back.
How I Got Here
In 2003, just months after giving birth to my son, I was diagnosed with systemic scleroderma, a connective-tissue disease that causes scar tissue to build up not only on your skin but also in your internal organs. This type of scleroderma is often diagnosed in conjunction with another autoimmune disorder such as lupus. Lupus causes your body’s immune system to become hyperactive and attack normal, healthy tissue, resulting in swelling and damage to organs like the heart, kidney and lungs. Sure enough, I was diagnosed with lupus four years later.
Being told I had a debilitating illness was hard to hear because, before then, I had always been healthy. Around the time of my scleroderma diagnosis, I was married with two children, a daughter and newborn son. I was also changing careers; although I had worked at an internet startup after graduation, recreational therapy was my minor in college and I wanted to get back into that field.
For about a year after my diagnosis, I had to undergo chemotherapy, which is sometimes prescribed for patients with systemic scleroderma, and it left me feeling so rundown that I had to leave my full-time job in recreational therapy. The illness also took a toll on my family; my husband and I separated (and then later divorced) because he said he couldn’t handle me being sick.
With my medical bills creeping higher and higher, and with two kids to support, I applied for Social Security Disability Insurance in 2004. This was difficult for me because I had never asked for any government help before. I’m 36 and have held jobs since I was 14. I’m not the type of person who wants a handout instead of a paycheck, but now I finally admitted that I needed help.
I received about $1,100 a month, and my children also received money, about $300 per child each month. (If you qualify for disability insurance, your minor children can also receive benefits based on your employment history.) While I cashed the checks that were sent in my name for our living expenses and my medical co-payments, I opted to save the kids’ money. I figured it could help pay for their Catholic school tuition or contribute to their college savings down the road. These monthly checks, along with the Medicare I became eligible for once I went on disability, were extremely helpful.