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.
My symptoms were erratic and I had good days and bad, but thanks to my medication and treatment, there were periods where I was able to work again as a recreational therapist. This was O.K. with the Social Security Administration; they actually promote working even while on disability payments. You’re just not allowed to make above a certain amount. During the times I could work, I was making $38,000 a year working part-time, and I reported this to the agency. In fact, I called them to double-check that I was staying within the acceptable salary range and was told I was well within the limit.
At the end of every year, the Social Security Administration would review my income and decide if I was eligible for an increase in my disability payments. And every year, I did get a small increase. I thought this was a cost-of-living increase because I never asked them for more money. I assumed they were reviewing my case and increasing my payments according to their own assessments.
Then, the Bills Began
In 2010 I received a form letter from the agency stating that they were stopping my disability checks because they needed to know more about my work history. I was puzzled. I had reported my income, and they were the Social Security Administration after all—didn’t they have my entire work history already? The second letter I received soon after was even more troubling. They explained that they had overpaid me—and that I owed them $11,142. They would stop my benefits until the amount was repaid. I was stunned and scared. There was no way I could pay that back.
I went to my local Social Security office and handed over bank statements, pay stubs and proof that I had saved the money that went to my children. After reviewing my paperwork, they essentially admitted that they had made a mistake, and were going to continue my disability payments as well as give me the money they had withheld in the meantime.
For a few months I put all the money they sent me into a savings account because I had a feeling this wasn’t resolved. But when I was hospitalized for two months due to the lupus, my bills began piling up.
At this time I wasn’t working because my symptoms were so bad, so I needed to start using those funds. But I was always worried that the overpayment issue would come back. Sure enough, in February 2013—a full three years later—I received the all-too-familiar letter stating that Social Security needed to know more about my work history.
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This Time, the Bill Was Bigger
Just like the last letter, this one explained that they’d overpaid me. Unlike the last letter, however, the bill was considerably larger. Now I owed $53,190.10.
Although they had decided earlier that they hadn’t actually overpaid me, they were now reversing that decision. They also said that they’d made two more mistakes: They said they had overpaid me by a greater amount than before, $35,470.10 for my payments altogether, as well as $17,720 that they'd overpaid to my children.
I cried like you would not believe. Even if I worked for years, I’d never be able to pay back that much money. I might as well have received a bill for $10 million. Every time I called Social Security to figure out what was going on, I was so unclear about what was happening. I felt like one hand didn’t know what the other was doing. On top of that my health insurance was in jeopardy. With the type of Medicare I was on, if you stopped receiving disability checks, you also lost your coverage.
One of my medications costs a whopping $400 per pill without insurance. I haven’t had any health coverage since February and have had to pay for my medical expenses out-of-pocket. Fortunately, my pharmacy is a local mom-and-pop shop where the pharmacists know me by name. They are cutting me a break when they can and trying to find other ways to help lower the cost, but I’ve also cut back on certain medications.
How I’m Getting By
Luckily, I did have some savings in the bank, about $15,000, when my disability payments stopped. Now I’m down to $5,000—and that will be gone within a few months’ time. I’m behind on my bills. The only way I’ve been able to pay rent is through a donation from members of my church, which covered me for three months. In meantime, I’ve applied for scholarships for my children’s school and have cut back on certain medications.
I have appealed the Social Security Administration’s decision to stop my benefits and did receive some good news this last spring. In May I got a letter stating that they’d decreased the balance I owe to $17,000, which is curiously close to the amount that the agency said they had overpaid the children. I guess they don’t think I owe them the $35,470.10 anymore.
Although I’ll take whatever reprieve I can get, $17,000 is still more than I can afford, and I’ve since filed additional appeals. I’m still waiting for a response. In the meantime, I get a bill for $17,000 every month, and I’m still not back on disability payments, nor do I have health insurance. Every time the agency sends me another bill, I call them and explain that I will not send anything until I get a decision. Then, I punch three holes in the bill and stick it in my ever-expanding binder.
Even with my symptoms, I’m doing everything I can to find a job so I can get health insurance through an employer. My doctors have discouraged this, telling me that I can’t take on work that’s too physically demanding, but I’ll take anything I can get right now. I will work until my fingers bleed if I have to. It has to be better than the hell I’ve been put through.
While the outcome of my case is still unclear, my faith is what gets me through the tough times. And I know I’m not alone in this predicament; I’ve seen reports that the Social Security Administration is asking others for paybacks. I do have faith that I will get through this. I might have to get a lawyer to help me. Or I will find work to pay back the $17,000 they say I owe. Somehow, I’ll find a way to clear what they say is my debt.
According to this CNN story, many people like Aisha may be in a similar position. If you are receiving Social Security disability benefits and have questions, a good place to start is the National Disability Rights Network.