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

social securityIn 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.

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.

        • Jacinto

          They can’t stop you, they will either reduce your check back on the income you are getting or they will stop payments into you stop working if for any reasons related to health and start again payments after notifying SSA.

      • Bandimore Fox

        I agree with you.

      • Mike

        There are disabled people who work! Your statement is false. When I was attending junior college and the University I remember two teachers. One teacher was handicapped. He had a wheel chair. The other teacher I had in class and he had a disability as well. Not sure what kind he had. Educate yourself before making false statements. If a teacher in a wheelchair can’t walk, then can you say they are not disabled? NOT ALL DISABLED PEOPLE CHOOSE TO NOT WORK. SOME INFACT BECOME SUCCESSFUL!!!!!!!!!

        • Don’t care about you

          They can work and should not receive benefits it shows that most disabled people can work and should!!!!

          • don

            “most” can work? please educate yourself before sounding stupid.

          • Don’t care about you

            Do you mean all can work. Because I got retarded mentality challenged next door man who eats ants and rubs dog crap on his dad’s car all the time he’s 34. I don’t think he could hold a job. I believe 90 percent can and should work.

          • Mousey


          • Ken Berends

            Most stupid like yourself should get a better education too. It doesn’t ever mean that you do, before you go running off at the mouth with ignorant opinions that have no factual basis whatsoever.

          • Don’t care about you

            I bet your one of those people who are “disabled”. But can go on Facebook everyday and post selfies. You all can use a computer but can’t work. I bet too that you are like “getting ssi for yourself is good but what you really need to do is get a kid that can pull a ssi check every month!

          • Stef


          • Don’t care about you

            “Most stupid like yourself Should get a better education too.” A duh what a Dee ta dee you are. Just so you know “yourself” is a reflexive pronoun that you use to describe when you are also apart of that group. Wow you are special no wonder why you want a free check.

          • Justin Masters

            So being disabled means you can’t have a life latst time I checked their not vegetables I know someone who has ADHD PTSD Explosive anger disorders and dyslexic too dose that mean you want a person in the work force too that will snap uncontrollably on anyone who says the wrong thing to them disabled people aren’t in the work force because of safety a 6,4 disabled person coming at you is worse then getting into a bar fight even if you call the cops on people like this it takes 10 of them because his disability gives huge amounts of strength anger it’s like watching the hulk live the good thing is the majority of this country loose helping but people like you seem to get so angry I’m starting to think you got denied and now hate on everyone else because of that

          • Don’t care about you

            Lol. That is the excuse of a person who just wants to be a criminal and get paid to do it. My job allows me to conceal and carry. I know men who have no legs and have serious health issues who go to work daily. That hulk is just a slow kid whos family did not raise him right. All of those “disorders” are not physical diseases that will actully prevent you from working like a stroke victim or weelchair bound person with palsy or MS. News flash we all have anger sometimes we all have trouble concentrating sometimes its called stress! The rest of americans are able to control themselves. I bet like many who say I have anger issues I just flip out . When It comes to them sitting 5 years in a Max prison I believe they would find so so many new ways to control themselves like other americans can do its called consequences . I do managing for subsidized housing I see everyday the phoneys that collect disability. My favorite part is when I report scum bags who only use a walker or cane when going to the SS building 2 blocks away. I get letters all the time to be a witness at continue disability reviews for those should got off it in the 90s for being a alcoholic or drug addict. We bust them all time drinking from the cans and bottles or passing out in the community room drunk or high on heroin. We have had the garbage company reject 5 bins because of needles in the trash. Our diabetic tenents receive a free sharps container and the needles are all dirty and used many times. Many on disability are scammers not all are but many are! Get them back to work and maybe they would find meaning. It would get their minds focused and back working like normal folks who work for living.

          • Don’t care about you

            Lol. That is the excuse of a person who just wants to be a criminal and get paid to do it. My job allows me to conceal and carry. I know men who have no legs and have serious health issues who go to work daily. That hulk is just a slow kid whos family did not raise him right. All of those “disorders” are not physical diseases that will actully prevent you from working like a stroke victim or weelchair bound person with palsy or MS. News flash we all have anger sometimes we all have trouble concentrating sometimes its called stress!

          • Justin Masters

            Your just a simpleton the good thing is the majority of this country hates people like you republicans are and will always be pricks it’s nothing new you don’t have medical degree so really your alternative facts are just smoke an mirrors nothing you say will change how people feel 65,844,610 people in this country believe in helping the disabled and less fortunate not to mention if you want people to get attacked in public because a lot of them have LED witch is a anger management disability then I guess your dumber then hillbilly licking a telephone pole and all honestly get over it we $80 bucks a year so calm ya bitch tits down

          • Don’t care about you


        • Jacinto

          There are different type of disabilities. There the ones on which you are a disable, but still can work because, either you are limited to walk seat on a wheel chair but don’t have pain. Those people do chose to work because they do not have pain.

          Now if you are a person like me, who is disabled because my spine was broken in a car accident, and received a surgery that didn’t work and continue in pain, either standing, seating for to long, problems walking, take medications that doesn’t allow you to focus, like many pain killers. You are considered disabled and can’t work.

          Trust me, I am disable with chronic lower back pain, and I received my social security, but sometimes I which I could go back to work, and just looking at the laundry when I do so once a month even more, makes me tear up because I will be in pain for days.

          It is not easy when when you are disabled and with pain.

      • Mousey

        I agree hell she made a lot of money part time should have got nothing

      • Michele Ann Kirchman

        This is true, $38,000 a year income would stop her benefits. If the income was reported properly the adjustments would have been done in a timely manner and the risk of over payment would not exist. This would also apply for the medicare, when you are receiving S.S.D.I. you qualify for medicare, even if you return to work I believe there is a trial period with the medical of about a year, because they want to make sure that you do not have a relapse in your disability. Medicare payments I believe are 80/20. If she was making $38,000 a year she should have been able to survive on that while in remission, and she should have saved all the disability payments to be on the safe side.

      • rick

        no dummy Nonya, one can work and be disabled even if they make over the allotted amount. Another one who doesnt know what they are talking about. SSD is not clear on benefits and caps it at 24,950 a year. The max she can make. Even those like I in the ticket to work program can get into trouble because there is no one at SSD explaining anything to you Get an SSD advocate locally and request a Ombudsman. Then request a review of their decision and waiver which they usually find out SSD was at fault in more than 1/2 the cases.

      • Shayla Urban

        You’re last two sentences are incredibly judgemental and assuming. Obviously, you are under qualified to render appropriate judgements and you are making yourself appear foolish. So let me spell it out for you, some illnesses have periods of remission along with periods of improvement, yet not full remission. If you are wish to consider gaining wisdom, you may consider this advise, be careful what you judge because you are a human being and like all human beings, you are vulnerable to illness.

    • Ken Berends

      No it’s not their mistake. It was her’s. She admits in her own letter by the time they cut her off to having over $15000 in savings. Social Security clearly states that ANYONE on disability, may not have more than $2000 in liquid assets at any time. Meaning when they did their math, they’re factoring in anything she had in the bank that was above that margin. Each month that she was above it. That is one of the many things they calculate into over payment.

      • Rhonda Phrampus

        That’s incorrect. She was on SSDI her assets do not matter. However if she was on SSI,, then yes her assets would matter. Your argument is not valid in her case.

      • checo

        certain assets are not counted like the home you live in and one car.

  • 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.

        • Peg

          Driving a Mercedes does not mean you are cheating the system. You are allowed to have any one car no matter the value, even if it’s a Mercedes. It does not count as a resource and it does not make you ineligible for medicaid or SSI. Since most people have assets prior to disability, it makes no sense to have them sell, at a loss, a car they need for transportation. If someone bought a Mercedes for 50k, became disabled and then tried to sell it but only got 25K towards the 50k value, what sense does that make? Then they lose their transportation and 25k.

          • Don’t care about you

            If you can afford a car that most people who work can’t you should not get any government benefits

          • Dixie Burge

            If people work, they should be able to afford SOME kind of car, if they are living within their means. Of course people on SSI should be able to keep the car or home they have if they were working to earn them before they had to apply for SSI. They shouldn’t lose them just because they become disabled without enough work credits. Let’s not wish them into homelessness with no means of transportation!

        • Rhonda Phrampus

          No she was collecting SSDI not SSI. She was however working while on SSDI making above the allowed amount that SSA has established for SSDI recipients. They do provide recipients with this information. However, once SSA saw she was exceeding that amount, they should have educated her, not allow it to continue. They need to eat this mistake and move on. Re-established her benefits and properly educate her on working while collecting SSDI.


        You kinda don’t make sense honey!!!

        • Dixie Burge

          She does to me. Makes perfect sense. What part of her post do you not understand?

  • 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

        • Don’t care about you

          He was on disability also probably!!!!!!

          • Dixie Burge

            People on disability really sticks in your craw, doesn’t it?

          • Don’t care about you

            My mother works for the county social services. She has told me so many things about this subject it is disheartening what I heard. The many who fake to get it The many who wait so long to get it but die before getting it. The adults who purposely delay development of their child to get diagnoses then get the kid in special ed for them to get them on ssi. Go on the SSA website and look at the cases of fraud and convictions.

    • 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.

        • Dixie Burge

          Because SSDI payments are not dependent on how much in assets a person owns. SSI payments ARE. SSDI is linked with Social Security, so payments of SSDI are dependent on a person’s work record (or if they are a qualifying dependent). So the person may have their $100,000 cars and half million dollar homes and still get SSDI if they have 40 work credits.

          On the other hand, some people just know how to “work the system”. It isn’t right, but some people seem to know how to do it. In my opinion, they are scumbags, but…

    • 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

    • Don’t care about you

      i work and can’t save a dime supporting a family till i get a better job.

  • 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.

    • Holly Rita Davenport

      Spent months proving that too. Heroes how I dealt w them. First find out what account it went to then get statements for those months. Also get them notarized n bring them in person. Make sure they stamp it too

  • 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.

    • Dixie Burge

      Well, once again, SSI has nothing to do with Social Security. It falls under the Department of Social Services.

      • Don’t care about you

        That not true it is a dual federal and state program. Some states contribute to SSI payments well sometimes only the federal government contributes in certain States. Some states contribute a decent amount to an SSI check well others States contribute nothing. Both SSI and SSDI approval goes through the state disability determination board in every individual state.

  • 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.

  • Bandimore Fox

    Not to be rude, but catholic school is not only more expensive than public school, it is an inferior education. That aside, the government does some screwy things, but you cant get blood out of a turnip.

  • Benny

    The government is a mass they are reasonable for they know her SSL number but they kept the checks keep coming

  • Julie

    I was under the impression you aren’t allowed to have savings and be getting help from the government. If you have enough money to save then you have more than enough to live on is the implication. Government is only supposed to give you just enough to sustain yourself.

    • Jessica Johnson

      I can agree that the SSA is pathetic. I’m a young married mother of 2 young children, and currently on SSD/SSI. I was diagnosed with an autoimmune disease at the end of 2011 and spent the next year barely functioning in and out of the hospital. I’ve been through it all. When I went to the state required doctors appointment I weighed 84 lbs, had an ir drain in my stomach and a cvc in my chest, and a 147 heart rate. I had also just went though surgery 2 months prior where I had 20cm of my intestines removed. They were also putting me on an infusion every 8 weeks. 2 weeks prior to the infusion I would get sick(extremely tired, nauseous, pains) and 2 weeks after same thing. The infusion would also completely wipe my immunities leaving me, as my family would say, a bubble girl. The common cold could possibly kill me. They denied me disabiliy. I got a lawyer and fought and now in the beginning of 2015 I was finally approved, they have approved me with a back pay of 10000 since 2012, and I recieve, for me alone, 350 SSD and 250 SSI. My husband brings in about 1200 a month. They told if my resources equal to over 3000 dollars I will lose my disability. That’s resources not income, for income me and my husband together can not make over 3000 a month. That means if there is 3000 in my bank when they deposit my SSD/SSI check then they will not deposit it. Against this women, I do hope she gets things figured out but I don’t understand how she could save for a college fund, tuition for a catholic school or anything remotely big. I do find it a little offensive with not just her but people truly and knowingly abusing the system. We barely scrap by each month, I have yard sales every summer, selling used clothes and things we don’t need(anything that doesn’t sell goes to the salvation army to help other people in need), just to have enough money to buy my kids new clothes before the school year, If I could work PT and make 38000 just by myself I would not be on disability. I would find a good insurance program to help pay for the extremely expensive medical bills but other than that, I would be living actually quite comfortably considering you can also claim taxes and get back roughly 10000 because of the children and that is still in the values for qualifing. As well as if you go into the hospital after working a number of months you can recieve FMLA and temporary disability to pay for your bills while you are out of work. She should however get a lawyer because even making that much money it will be hard to payback the money and according to the statement it does sound like SSA made a mistake. They should inform you immediately not after 3 years or so when the payback has gotten extreme. If this is not resolved and you are forced to pay them back then I would just penny pinch it and pay a minimum amount and sacrifice your taxes. Then stick with your job for as long as you can for the benefits and only ask for temporary assistance when it it needed. Oh and catholic school is good and all for your beliefs but if you can’t get pay for it then I would look into public schools. Yes your children will not get God teachings in their education but you can back up what they need to know in church and at home and still have enough money to pay for your medication. If you don’t stay healthy then who will look after your children. Worse case scenario if you are not there will the other party give your children God in their education? I think you need to prioritize a little better and not take that job for granted because there are other people who can barely survive. And for any trolls out there, yes I pay for my own internet access, my computer was bought as a present. If I get to the point where I don’t have enough money for an important bill or food(and I have before) then I cancel my internet until I have the money. I don’t expect the SSA to pay everything for me, I expect them to help me not drown because me, my husband and every part of my family have contributed to their paychecks and everything else is up to me. If the money they give me is all that I will get then it sucks it is not more, but I will make due because every penny helps.

      • ObservingHumanNature

        There is a limit on resources for the SSI, but not the SSDI, they are two different programs. SSDI, you must have worked and earned credits. So yes, they can take away the SSI, but you will have SSDI as long as you are unable to work due to health issues that prevent working.

      • Dixie Burge

        The IRS is just as bad at waiting several years before informing a person that they owe back monies. With the Internal Revenue Service, you will also owe interest and penalties. I know, because 3 months ago I received a letter from my state’s Department of Revenue stating that I had not filed for the 2011 tax year, and owed over $3,000. I couldn’t imagine how I missed filing, because I ALWAYS file. But then I remembered that it was during a time when I had multiple issues on my mind, so I obviously forgot. In contacting the IRS I was informed I hadn’t filed federal either. As it turned out, after I did file late taxes, I ended up owing only a bit over $13.00 to the state and broke even with federal because I would have received a decent refund had I filed on time. I breathed a BIG sigh of relief! But I know some people are not that lucky, and end up owing many thousands of dollars in back taxes.

    • ObservingHumanNature

      Having been through the process for SSDI, I can say this. SSDI is for people who have worked and paid SS from their wages over the years. SSI does not require that someone has worked, the limits on income/resources reflect this. Anyone interested can look up the programs online. As far as the woman who wrote this article, there are clear guidelines on the Ticket to Work program, the income limit is around $1090/month, after 9 months of making above this, benefits go away. Contrary to the belief of many, SSDI is not easy to get, you must prove you have health problems that prevent you from doing any work at all. They review doctors records, and speak with others, SSA contacted my supervisor from work to learn how my health had affected my ability to work. I have been a professional for years, and it’s a very humiliating process, made worse by people looking down on you, no matter that for years I worked for the good of my community. I can’t wait to take part in the Ticket to Work program, I work with my doctors in hopes this will happen and I can return to meaningful employment. The person who wrote this article should have known the guidelines for working, they are the same for everyone! SSA sent me brochures with my award letter, I was told on the phone, I researched it myself. Ticket to Work SSA brings it up in a flash. Income guidelines for those getting SSDI are on the SS website. These are *not* the same guidelines as for SSI, which is entirely different. This woman and others like her give those of us using the program properly a bad name.

      • SwampVA172

        False. There are two levels with SSDI: Trial Work Period and SGA ($770 and $1090 for 2014). You have 9 TWP months to use within a rolling 5- consecutive-years, during which TTW can help you retrain while keeping SSA’s contract doctors off your back. Yes, your income is un-capped, BUT it’s hard NOT to earn over $770 a month. After 9 TWPs, you enter a 3-calendar-year EPE. If you’re under the SGA, you get benefits for the month; if over, you don’t. You can go off-and-on. The “cliff” comes when you break SGA – AFTER – EPE — then you’re really off, though you have 5 years to apply for EXR with the same disability and not a whole new application. (All this assumes you don’t fully recover, and don’t try working for yourself, which has its own rules.)

        See SSA’s Red Book, or far better yet, their POMS. NOLO and Cornell also have good disability help.

        BTW, theoretically this can all work if you heal enough and return to F/T. But open all your mail. it’s especially easy to get into over-payments during EPE because of lag times. And who’s to believe they’d reinstate you in 6 months for EXR with their backlog? That’s why the cliff will scare many with chronic illness from working until they make BOND available to all, but we’re not Europe so don’t hold your breath.

        Best of luck.

  • MIKE


  • Mark Plante

    The same happened to me. I am disabled And when I first applied for SSD . Was due to being in hospital for a month due to pancreatitis , due to the Botox injections for Essential tremor. I started SSD in 2002′ I had my first Surgery for DBS ( Deep brain stimulation ) In April of 2002′. I then started a new job in 2002′ I was able to get my class A in July . But was laid off due to medical waiver was needed. Then in December of 2002′ ( And during this time I was on my wife’s insurance and not Medicare.) I had second surgery for other side. I then tried again for medical waiver and was able to get. I tried working full time but got tired very fast during the first 9 months that they give a trail period. I had dropped to part time. And found out it did not matter . My Benefits was suppose to stop in 2006′ they extended them to 2008′ I have had about twenty plus surgery’ to Essential tremor and now finding out it’s Parkinson’s with tremor. I got letter this year saying my Benefits was suppose to end in 2008′ And was over paid I owe $85,436.00 When I tried giving them my pay stubs in 2005′ Which was my first over pay which I paid back $5,635.00. They said they had my W-2′s and did not need pay stubs. I have my pay roll and the number’s they have don’t add up. My Anxiety is real bad can’t sleep. Just started back full time. We are so deep in debt. Should have never gotten on SSD . They think you can pay bills on $500.00. So they have me listed Disabled but able to work. I made $6,500.00 a year. Working off and on.

  • hydy

    i was told i don’t have the right accent, i had to get me a lawyer, i think my European accent was not that the wanted , how stupid , i think i have to learn a Mexican accent, because i was told the same when i asks for food stamp`s, my god are people stupid mostly the government workers either tell me i don’t no ,the WY are you working there

  • Leslie

    I can simply see she was telling the truth because of my story. I have a disabled child who was receiving SSI before my husband made new rank (Military) and our child was no longer eligible for SSI because we (my husband, I don’t work due to her needs) made too much. We qualified for SSI for almost 2 yrs. Social Security knew my husbands rank and time in service. There was actually a website that showed them how much he makes. When my husbands was deployed I didn’t have access to his pay stubs. But again the website showed how much he was making. Social Security told me I owed $10,000 in overpayment! How could this be? 5 years later I’m still fighting their mistake! She will qualify again as husband and I will be separating but so scared after I see this story. Do I even submit paperwork because they won’t even give us a dime due to the fact they still believe we owe them. I know for a FACT this wasn’t our mistake. If we can’t trust them to do their jobs and be accountable for the money they say we are eligible for, then who should we trust? How scary to spend the money only to be told years later you owe back payments.

  • Mousey

    U were making 38000 a year why the hell u need help. Wtf

  • Salome

    Attention Please, Are You Desperately in need of a loan OR you in need of financial assistance? My name is Mrs.Salome Njeri. I live in California and i am a happy woman today? and i told my self that any lender that rescue my family from our FINANCIAL situation, i will refer any person that is looking for loan to them, they gave me happiness to me and my family, i was in need of a loan of $100,000.00USD to start my life all over, i am married with 2 kids I met this honest and GOD fearing man loan lender that help me with a loan of $100,000.00USD, online, he is a GOD fearing man, if you are in need of loan and you will pay back the loan please contact them tell him that i Mrs.Salome Njeri, that refer you to them now via email: ( ).

  • Salome

    Attention Please, Are You Desperately in need of a loan OR you in need of financial assistance? My name is Mrs.Salome Njeri. I live in California and i am a happy woman today? and i told my self that any lender that rescue my family from our FINANCIAL situation, i will refer any person that is looking for loan to them, they gave me happiness to me and my family, i was in need of a loan of $100,000.00USD to start my life all over, i am married with 2 kids I met this honest and GOD fearing man loan lender that help me with a loan of $100,000.00USD, online, he is a GOD fearing man, if you are in need of loan and you will pay back the loan please contact them tell him that i Mrs.Salome Njeri, that refer you to them now via email: ( ).,

    • Dixie Burge


  • Ken Berends

    “about $15,000, when my disability payments stopped”

    That’s why. You’re never allowed to have more than $2000 in the bank at any time whatsoever. If you do, Social Security will get wind of it, & will start to penalize you for it, as they will count it as additional income. Naturally if they’re doing that in their eyes you’re being overpaid.

    The only exceptions at all to their $2000 asset limitation are, inheritance, which can be in the form of a Home or Vehicle, provided it’s your sole residence or vehicle, money provided it does not exceed that limit, or is spent immediately towards ‘Home, Vehicle, disability expenses, etc’. The other exception to this rule are the new disabled expense accounts, called ABLE accounts. Even those you must document where every single penny is being spent or Social Security can, and will come after you for it.

    • Don’t care about you

      You sure know a lot about how to scam the system. Instead of using it to collect those disability checks why don’t you use that ability to pick up a more productive skill that contributes to society then take from it all the time. You are nothing but a degenerate if you get those checks I hope they stop. If your trying to get them I hope you get denied your claim. People like you are what’s wrong will this country. I pray that a far right republican gets into office of the president and guts social security disability program.

      • Dixie Burge

        My, my, you ARE the bitter one, aren’t you? If SSDI is ruined, then what would happen to the people who truly ARE disabled and deserve SSDI in the truest sense of the word (like the blind/deaf, quadriplegics, multiple amputees, etc.)? Would you wish them into homelessness because they are unable to work? Or would you, in your hardness of heart, not consider even those people disabled? Thank God YOU aren’t in charge of the government! Really disabled people would be turned out onto the streets with no one in government who would feel a bit of pity for them. You truly live up to your username.

        • Don’t care about you

          Leave it to charitable organizations like ngo’s and churches.

          • Jane

            Don’t care about you, I find your last statement very cold. A person that becomes disabled and collects SSDI has been paying into a fund throughout their work history, or their parent has paid ( in the case of a child who becomes disabled before age 22 ). There are no asset restrictions as you have paid into this fund, it is not a social service entitlement, it is not SSI. During a five-year period, you are given nine months that you are allowed to make a paycheck without a ceiling, but must report this to social security. The nine months do not have to be consecutive. The nine months are given to allow the disabled person to see if they can continue working with their disability. Because they do not have to be consecutive, I can see how the woman could’ve been on SSDI, while being told it is OK to make that much money. Somewhere along the line, The system failed. She obviously didn’t understand that she could not continue to make that much money and still keep her benefits. I won’t pretend to know what is going on in your life that has made you so angry, but let’s remember, this woman is a fellow human being going through a very bad time and give her a break. I have been through the social Security’s hamster wheel ( as a payee and an advocate for a mentally retarded person ) and it’s very difficult to get anywhere. Most businesses require their employees to be accountable for their work, including their mistakes. Social Security is not set up like this. And with all the employee cutbacks, employees are making mistakes. The problem is, there is no corporate executive that you can write or speak to. You are at at the mercy of the system, and that is a very frustrating, and scary place to be.

    • SwampVA172

      That’s Supplemental Income, not Disability Income. SSDI is not asset-based.

      If she’s telling the story straight, both the OP and her field office royally screwed up. But you can’t count on Uncle saying, “My bad – keep the cash.” You have to stay on top of everything. Even if you have a great field office, Baltimore is a black hole where the left hand doesn’t know what the right’s doing. Worst comes to worst, you insist on a “manager-to-manager” between the FO and HQ; then write your Congressman, or get a lawyer.

  • Bruce Sanders

    I can’t for the life of me understand, these are two separate issues here, one you have a disease this hasn’t changed thats why you were on disability in the first place, so your medicare should have still been able to you cause it hasn’t gone away,second there is a money problem if they overpaid you ok they want there funds back and stopping payments to you catch back up ok I understand that to but as long as you can pay medicare premiums like everyone else that has a disease insurance shouldn’t stop thats crazy

  • J.F. Wildwind

    I think social security needs to just give me back all my money that they extorted over the years so i can invest in a interest bearing account for my own behalf and future. I dont believe social security has anyone’s interest In mind. The Social security administration extorts our money, collects interest on it and gives the American people a difficult time giving back what’s ours. Remember it’s not there money, it’s yours. We need to demand that OUR MONEY is returned in full at our request at any age. If they do not comply than its should be no different than embezzlment. I want mine back, Avery penny of it.

  • Dixie Burge

    When you say SS, are you referring to Social Security, or Social Services?

    She was receiving SSDI, not SSI, so your case isn’t really like hers.

  • Danny Wilhelm

    All these people saying oh no one needs it. Who really cares what you say. I can work and walk and talk but some can’t see or hear all at once. Being in a wheel chair does not make you eligible for ssi. Not being able to function in society do to mental defects and severe injuries is what makes people disabled. When those people apply or some even can’t because how Ill they are and have a parent or caretaker do it for them. Ssi have tests to qualify. Not just anyone can say hey I can’t work I need money and just get it. Tired of all these judgemental people it’s disgusting. My uncle is a paraplegic with a 30% vision. People like him does not deserve all the hate.. Some of you are off topic. This woman didn’t do everything she was supposed to do. She did not follow all the requirements.

  • GetItRight2016

    You cannot save the money you receive for your children. You fill out a yearly report, if you show you save money then SS wants it back. Of course you can save money you receive for anything…just not what your kids get. It’s a shell game, fill out the paper work correctly.

  • Arch Stanton

    If I am 100% disabled veteran permanent and total then why does the Social Security Administration keep asking me if I am STILL disabled each year?

    They also demand I list my doctor visits, surgeries and what not.

    Why does some pencil pusher who I never met get to decide my fate when I have 6 Colonels and over 10 years being PERMANENT AND TOTAL.

    As in PERMANENT!!!

  • Arch Stanton

    Get rid of your moderators and censorship.

    You will find more people willing to waste their time watching your ads and participate.

    You just turned me off to your site.

  • only126db

    I got a letter saying they overpaid my son $2000 and showed a list of payments, none of which match anything that got deposited into the bank via direct deposit. The reason they said they over paid was because they didnt have income info, which is a lie….It gets sent in at the beginning of the month, every month. So in essence they are saying they didnt have my income info for 7 months or more….LIES LIES LIES

  • dar

    That is way over the allowed amount she agrees to when she takes Social Security, and her kids are getting it too…! Not to mention you have a 9 month trial work period. If you are over the monthly limit for the max trial work period, you are deemed qualified to work and you care clearly capable of earning a decent living! Even part time you can earn what a lot of us earn full time.