It Happened to Me: Social Security Wants Me to ‘Pay Back’ $50,000

social securityIn our Money Mic series, we hand over the podium to people with controversial views about money. These are their views, not ours, but we welcome your responses.

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.

RELATED: How My Disease Is Bankrupting My Family

  • Kasy Allen

    We have a very similar story, but it is my son with a rare disability ( that he’ll live with for the rest of his life. I, too, went to the SSI office to fight what they were doing, but there was nothing I could do to get rid of the re-payment. It wasn’t quite as large as yours, but nonetheless, I always wondered if anyone else had gone through what we went through, and then there was you.

  • jpmonte

    It’s Social Security’s mistake, not Aisha. She did everything to the letter. SS needs to find out which one/ones of their employees screwed up, fire them and eat the mistake…just like a business would have to do. This is why so many people are anti-goverment…they are not held accountable for their mistakes.

    • LindaB

      Of course, you’re completely correct. And of course, because of absurd civil service “protections” the right thing won’t ever happen — the bureaucrats will keep collecting their checks and enjoying their lavish benefits. Sickening.

    • Nonya Bizness

      NO, it’s Aisha’s mistake NOT SS. She WORKED and made $38k working PART TIME! That is WAY over the allowed income, therefore, SS found that she is not disabled, and she must pay the money back. It’s also her fault for relying on the word of someone at SS, claiming she told them about her income, and all was fine. SS doesn’t make decisions at the drop of a dime. It takes time. In the time they were reviewing her case and work history, she continued to work AND collect benefits. She made more income than she was legally allowed, and now she must pay it back to SS. This is not a complex case. If she would READ about the benefits she’s receiving, and READ about the TIcket to Work Program that she was enrolled in, she wouldn’t have this problem. She was working PT making 38K a year, which is more than a lot of people make working full time. IF YOU CAN WORK, YOU’RE NOT DISABLED. IF YOU’RE NOT DISABLED, YOU CAN’T RECEIVE DISABILITY.

      • JMO

        They should have stopped her immediately then. Not wait years. They are in the wrong for that. The point is, she NOTIFIED them time and time again what she was doing and how much she was making. You said she should not rely on someone at SS. Then who???? You just proved the point in the first place.

  • ac_blaster

    Definitely get a lawyer, or at least contact your Member of Congress. They can sometimes help put pressure on federal agencies.

    • E

      At a minimum, please do call your Member of Congress. Ask for someone who handles casework. It’s free, and it’s not just about political pressure – caseworkers will have better access to SSA information and outcomes. regardless of your Member’s party affiliation. Not to mention, you’ll have someone to help you figure this out instead of facing it on your own.

  • Alana Brown

    I hope since Learnvest is sharing this story that they are offering to help in some way. I’m confused as to why they’re sharing the problem without any hint of solution.

    • Sharon Gilman

      What is Learnvest supposed to do about it??

      • Krysh

        I think Alana also means that LearnVest usually shares financial horror stories that end with advice for preventing or dealing with the circumstance. That would have made this article more useful. As is, it’s just a horrible story and not educational at all. If I wanted bad news I could have just read a newspaper.

  • Tiffany

    This happened to my mother too. She has since passed away, but it still makes me so angry about how she spent her days fighting the mistakes they made.

  • William Bernhardi

    I have practiced law in this area for over 25 years, and worked for Social Security before that. The story you gave doesn’t make sense – not from your side but from theirs. Why were your benefits stopped? Work activity? Medical improvement? If it was due to work, and you went off work again within 5 years of when they say your benefits should have ceased and you are not working now, you should be able to get back in pay status under an “Expedited Reinstatement”. Nobody mentioned that? Why did they waive your overpayment but not your childrens’? Is the other $17,000 waiver just a matter of filing the same waiver arguments on a different form with different beneficiary codes for the children? You need to speak with a lawyer in your area who does this. Try NOSSCR (National Organization of Social Security Claimants Representatives).

  • KateSF

    Aisha sounds like a very smart, hardworking woman who has been trying to do the right thing all along. I applaud her dedication and am so saddened to hear what a stressful situation SS is putting her and her family through (and many others, it sounds like). Hang in there! Hopefully you can get some good advice from a lawyer or other and fight this and get back on track.

    • Nonya Bizness

      She wasn’t trying to do the right thing. She was double dipping-working full time, and receiving benefits. If she’s so intelligent, she would know all about the Ticket to Work program, and even a fool would know you can’t work full time, and be considered disabled. I mean, lets get real-You have to be out of work for ONE YEAR before you are even eligible for SSDI, so HOW can you work FT, make $38k a year, and collect benefits? If it doesn’t make sense, it’s not true, and her story doesn’t make sense.

      • disqus_U2DqvyhBus

        Actually if you read she LOST HER JOB and THEN applied for SSI!!!!!! How about using your energy for those driving around in a Mercedes and handing a pharmacist a gateway card. THOSE are the individuals cheating the system- but you don’t see them getting caught.

  • William Bernhardi

    Also … If they ceased your benefits because they said you are no longer disabled, and you are appealing that, the appeal could take a while. If you are in danger of losing necessary medical treatment (your pills) or have a hard time paying rent, ask for “Dire Need” status for expedited consideration of your appeal. If the reason for your overpayment is a determination that you were no longer medically disabled, and you win your appeal of that determination, one would expect that the overpayment would be erased.
    I know, it’s tough to battle your own government when you are already burdened with severe medical problems. I wish you success.

    • Rhonda Huffman

      Hello William. I started the disability process on my own in 2011. Got to the hearing in front of a judge part,which at this point had also hired a lawyer. The hearing was almost 2 yrs. ago, I am wheelchair bound with a rare undiagnosed disease and many birth defects. The judge told my lawyer and I that she could definitely see I was permantly disabled and we did not need to talk about that , we just needed to figure out how far to go back to figure out when payments should have started, all within 5 minutes of being in the hearing room,she was on video in another room.
      We left thinking I would start receiving disability and Medicare,because I had passed the waiting period for both. A few months later, even after more medical evidence was sent to social security, one being 2genetic tests which had been suggested by the judge,just for my piece of mind, because my children are both experiencing some of the same symptoms as I am. The lawyer and I get a letter of a unfavorable letter. They said they will decide by end of the year if have to appeal again,so be it! I am so confused we have given them so much information I have letters form 3doctors,test results, even the last doctor from their office wrote I could never work for the rest of my life and the genetic test show this also. My lawyer has been working very hard and has tried to get the dire need I place, as I have medical equipment I despiratly need to help be comfortable and to be able to get to appointments
      Etc.. We have no money to acquire any of these things even with insurance,co pays are very high and I’ve been very sick in the last few months,so now we have more hospital and test bills. I have also been put on a nebulizer and have had problems with swallowing more so we have to buy
      Protein shakes so I can get my nutrition! I am progressing at a faster rate then ever before and I’m very scared I could die before we get an answer. I even sent a letter back for this last appeal pointing out the doctor that went over all my papers missed a lot of important things and decided I wasn’t disabled based on a 2-3 year old
      Report from a doctor I saw one time! I understand it takes time,but too many mistakes have happened and I’m running out of time. My question is any of this that has happened legal or
      At the very least reversible quickly? My lawyer is doing her best, but you sounded like you know
      A lot about what options I might have. Sorry such a long letter, is there anything you can do or suggest to help get this resolved quickly? Thank you very much for listening and have a great day!
      Rhonda h.

  • Jean

    I am not an attorney but have worked for the major law firms for decades. There should be a non-profit legal aid clinic in your area. I would be happy to help you locate one. If they take your case, they often times retain reputable attorneys to take your case on a pro bono basis (free). You get top representation for nothing. You definitely should seek an attorney. The SS system is huge and a mess at times. Without representation, they will continue to rake you over the coals. Keep fighting, keep hanging in there. And don’t hesitate to contact a news agency that employs advocates as well. The gov doesn’t like bad press.

  • Confused

    Am I the only one who is confused as to how she could save $15k while on social security. If the payments were $1100 a month she essentially saved an entire year of payments. She also managed to have kids in private school. As much as I would like to be empathic she was living better than most.

    • GG

      The article states that she got an additional $300 per child and she saved that. She might also be getting assistance from her ex-husband for their children’s schooling.

      • kgal1298

        That’s where I’m confused. Why is the ex-husband not paying child support? It can’t just be her and there has to be shared custody of some sort right? Or is he just as bad off? That’s the part I’m missing.

        • GG

          She didn’t really speak of the ex-husband’s role in the finances, so we can’t really know if he is or isn’t contributing. $1,100 a month is not a lot of money to pay for living expenses and private school, so I assumed he had to be contributing something, but again, she didn’t specify, so we can’t be sure.

        • Crystal Ann Tanner

          she stated she was making 38k a year working part time when she could work (more than middle wage? ) and collecting unemployment and 300 for children, more than enough to save

    • Rexfordmoose

      I agree. Sorry, I really don’t have sympathy for someone who sends their kids to private school and claims they need assistance. $38,000 a year, are you kidding me? I take home less the $20,000 and don’t get assistance. Assistance should only be for people that don’t have enough money for food, shelter, and medical; not for people that can’t afford to send their kids to private school. That’s an insult to people who can’t even afford to eat.

      • disqus_U2DqvyhBus

        Then please express that to those in charge of approving the individuals who are blatantly abusing the system with their $100,000 cars, half million dollar homes, while those who TRULY depend on this assistance are either turned away right off the bat, or who receive the benefits they are entitled to for an amount of time and then FALSELY accused of more than entitled to.

    • Nonya Bizness

      She received $1100 a month for HER. She also received $300 per month, per child, and claims to have saved that. How she saved $600 a month and also paid for Private School? I’d say making 38k a year helped. SMDH. Do NOT fall for her Woe is Me story. She acts like after 2 years, poof, SS just sent her a notice. SS disability sends EVERYONE a notice, and asks if you’ve been working. According to your condition, you will be reviewed, after 1,3 or 7 years. It’s called a Continuing Disability Review, or CDR. SSDI does allow you to try and return to work. It’s called Work Incentive Program. I believe it’s 9 months you can work, and they do NOT put a limit on how much you earn. After 9 months, you can NOT work and earn more than the Poverty Threshold, which I believe is around $1k a month,no where close to her 38k a year, without your benefits being affected. I believe her when she says she was reporting her wages, BUT, I also believe she was informed that she couldn’t work like she was and continue indefinitely to collect SSDI, AND I also believe she was told from Jump, if she worked and received benefits, she may have to pay the benefits back. Also, she’s able to come on LV and blog about her experience, but she wasn’t able to search online about the Ticket to Work Program? She was able to make $38 a year, but she couldn’t Google about SSDI and Working? Don’t feel sorry for her at all.

      • disqus_U2DqvyhBus

        Did you know… technically a Charter school falls into the Private school category? Charter schools usually don’t cost money- just like public but charter tend to be of a better caliber of learning

  • robin

    I have gone thru this with my son who has a disability and gets SSI. Contacting your local congress person is a good way to start to at least SSA knows they are being “watched”. Each case is different nut I did suceed in getting the amount bumped down from $13,000 to $3000 which was takedn out of future payments in 10% increments. Also look for local non-profits that help people with disabilities, sometimes they can give you good advice.

  • Working Mom and disabled Vet

    It’s a terrible situation and I feel sorry for her. However, what made her think that making $38,000 per year would still qualify her as disabled? That’s a decent income and she should have suspected something was wrong. Of course I have no idea what her conversations were with SSA, but it seems unlikely they would just OK that $38k salary when the limit is around $10,000 per year. There are hundreds of thousands of people on disability that are committing fraud by working (with or without claiming it on taxes) and as tax payers we’re all footing the bill. Just pick up a recent copy of the Wall Street Journal or NY Times to see the latest on BILLIONS of dollars spent annually on the “broken” disability system. I have no doubt SSA has provided wrong info to many people including this lady. However they are also very flexible about paybacks including modest $100 or less per month. I wish her good luck with resolving this issue.

  • Jessica Lawson

    They both made mistakes. Why was she sending her children to a private school while on disability? That is not what disability payments are for, to me that is taking advantage of the system.

  • Lawrence Dodd

    you cannot save all that money.. but you are lying anyway,, you just got lazy

  • jojo

    I’m in a similar situation. Only I never received the money they are asking to be paid back. SSI is claiming they paid me 800 per month and because I was working and earning too much money I need to pay it back. This would be true if they had actually sent me any money. I reported my income before they sent me a dime. I have letters from them stating that I would not be receiving any money because I am working, etc. Now they have turned it around and saying they paid me which they did not. I was told I could not appeal their decision and must pay the money. I feel that this is robbery. I refuse to pay back money that was never paid to me in the first place. I have tried to find an attorney but since this is not disability I have not found anyone.

  • Maureen Shaw

    I am being told I was overpaid SSI now since I have been working part time I wasn’t until a house my children and I were living in was so dilapidated we froze every winter and all but broiled in the summers I was desperate so when my bank said if I found a job and held it for 6 months they would help me find a better home. Well they kept their word and when I informed Social Security I was working they cut my monthly payments down to $65.00 I said okay. They kept paying me up until this last June I told the woman that I have to work we literally need the money what my son and I get each month wasn’t enough to pay bills and buy food. Well during the interview to see if I still qualified I asked the SSI worker if there were going to be any penalties she said she didn’t believe so she lied plain and simple. So now I’m contesting their decision what’s amazing Is that they sent an envelope saying just write them a check for the full amount. I can barely survive now and all my money goes to bills car and house payments every month. I am a cancer survivor I spent 5 1/2 years in the hospital fighting Type II Myelogenous Acute Leukemia and I have a few health problems as a result of that which will never go away. I don’t know what to do I can’t pay that money back and I don’t trust them to not try something under handed.

  • JMO

    That is absolutely horrible and not surprising. The whole work program that social security has and promotes should be done away with because they are not capable of monitoring that properly. How dare they promote you to work and then punish you so severely for it.