When I received a letter last fall that said I was, "not disabled" because I had made too much money in one month (October, 2013), and that I might owe over $14,000 I could have simply killed myself rather than go through the nightmare I have gone through to fight it. But I fought it. Like I always do.
I've been on Social Security Disability since 2000. I'm not ashamed to admit it, because I actually am a disabled person who deserves her benefits, although this is a fact the staff at the SSA fail to understand.
When I first started getting SSDI, my benefits were around $600 a month. I lived in Alexandria, VA, which is basically like living right in Washington D.C., one of the most expensive cities in the U.S. Try living there on $600 a month. Now, you might understand why I resorted to what I resorted to for money. I literally had no choice, since I was and am both physically and mentally unable to work a full time job of any kind, as I have been all of my life. At that time, I was also unable to work a part-time job of any kind that required such things as filling out an application, going to an interview, and following a schedule for which I had to show up. That is because I was floridly psychotic, and manic, at the time, and remained that way for seven solid years of my life, undiagnosed, and unmedicated. Further, I had zero family support. So, I was left to my own devices, and there weren't very many of them to use.
In 2006, as I became more stable (still having auditory hallucinations and delusional thoughts all day every single day, but "more stable"), I began to work part time. YOU ARE LEGALLY ALLOWED TO WORK PART-TIME WHILE YOU RECEIVE SOCIAL SECURITY DISABILITY BENEFITS. The only thing you are NOT allowed to do is make too much money. It doesn't matter to them how many hours you work or what kind of job you do, what matters to them is how much money you make.
I used to make less than $800 gross per month, since I needed to stay below the limit, but I also needed things like an apartment, a car, electricity and food. So I worked part-time, which I was, and am, LEGALLY ALLOWED TO DO.
Last fall, after I got that letter, which was not the first time I received a letter stating that I had gotten an "overpayment", but was the first time I received a letter stating that I was "not disabled" and that I owed the government of the United States over $14,000, I began my fight. I immediately went to the office in person. I filled out the paperwork and sent it in, with detailed pages, written at great length explaining my life and my symptoms and what my illness is like and precisely how mentally disabled (and physically disabled, but that is not the primary problem most of the time), I am.
I explained that at no time was I aware I had made too much money in October 2013. The amount of "too much money" I made was approximately $100.
For $100, the Social Security Administration decided I was (perhaps, as it was left up in the air for a year of my life) not disabled. And that I was never disabled for years. And that I owed them back all of the money that I had received.
So I sent in my paperwork, and more forms were mailed to me. I filled out those forms, and I sent them in. I went to the office. I called the woman I met at the office repeatedly on the phone, as my benefits were about to be cut off, which would have left me unable to financially survive, so I needed this taken care of immediately. It was NOT taken care of immediately. It has now dragged on and continues today.
When my paperwork reached "DDS" the Disability Determination Services office, they wanted me to fill out another bunch of forms about my work, what kind of work I do, etc., and I did that and, as usual, added extra letters with it. I faxed them and it cost me about $45 to print and fax that paperwork from FedEX, money which I did not actually have.
I then waited. And waited. And waited. I had been told my benefits might be cut off forever, although they were being "temporarily" continued, and that I might owe over $14,000, none of which I possessed.
They did not make a decision, so finally, this past summer, I got a "representative". This is a person who works for a law firm, although she is technically a paralegal and not a lawyer, and she was recommended by someone on the NAMI board to help me. Legally, under Social Security rules, she cannot be paid to help me fight to retain my benefits, so to take my case she would have to do so for free. I knew it was up to her to decide whether she had the time to do that, and I was IMMENSELY grateful when I met with her in her office, handed her my piles of paperwork, and she said right off the bat, "I am going to help you, Jennifer. This is WAY too much for you to be dealing with on your own. This is ridiculous".
She then started dealing with it for me, but in August or September, or sometime around then, I got a horrible phone call from someone at the local, Clearwater, Social Security Office, who I wish I could name here, but I will not, for fear of being sued. This woman was so rude and so patronizing to me, it was unbelievable. The conversation stopped after 20 minutes, when it became clear to her that she really had no idea what was going on with my case, and she needed to look into it further on her computer, and call me back. This happened on a Saturday, when I did not even think they were open, and if I knew it had been her calling, I would not have answered the phone. I told her that I had a representative handling my case, and she told me, "You don't need one of THOSE, for THIS, they aren't going to do ANYTHING." Legally, she was supposed to have contacted my representative, not me. But she would not do so, which happens to be against the law.
She called me back 20 minutes later, and then we had a conversation that lasted half an hour during which she accused me of lying about having ever been disabled at all to the Social Security Administration, having never told them I worked (I have told them on the phone, in person, and in writing, that I had part time jobs every single time I worked, repeatedly), and that I had purposely "not sent in pay stubs of all your pay checks" which she claimed I was supposed to have done since 2006. I told her that at no time, in all of my many dealings with the SSA, had anybody EVER said anything to me about having to send in "pay stubs", to which she said, "EVERYBODY KNOWS YOU HAVE TO DO THAT!". She talked to me like I was an idiot.
I am not an idiot.
I immediately emailed my representative and told her about the phone call and gave her the woman's name. She said that woman was legally supposed to have contacted her, especially when I ASKED HER TO CONTACT MY REPRESENTATIVE, not me, and that they were not supposed to be doing this to me. She said that she was going to call that woman's supervisor that Monday, and discuss this. She said that everything that woman said to me made no sense at all.
What that woman said to me was that the Social Security Administration decided I did NOT owe the $14,000.
That was the good news.
But what she also said was that I DID owe over $1700, for reasons which she COULD NOT EXPLAIN. I specifically asked her to explain it, and what came out was some ridiculous rambling of a technical issue regarding the dates when some paperwork was filed.
It made no sense AT ALL.
So my representative started dealing with it from then on.
I was at that time, already in a severe depressive episode. I did NOT need this added stress, nor do I need it today.
I called my representative from the hospital a few weeks ago, and asked her what was going on with the $1700. She said that she had appealed it, but no decision had been made yet.
I got a letter last Saturday that said, evidently a decision had been made (the letter made no mention of a decision or the reason why I owed the money), that I would receive no disability benefits for the next two months.
In other words, I will have no way to pay my rent, my car payment, or my car insurance, or my electric bill for two months.
That is not something I can live through right now.
I immediately emailed my representative, and she told me to send her the letter by fax or scan. I went to the library that day, scanned it, and emailed to her. She called me yesterday morning. She said, "Jennifer, the only thing that you can do to resolve this immediately is go there in person right away, and tell them your situation. I wish I could go there with you, but I do not have time this week. Tell them how you are about to become homeless if they take away your benefits for two months. Tell them that you just spent a month in the hospital. Tell them that you NEVER GOT A WAIVER to be able to appeal this decision before this decision became final."
I freaked out of course, ever since Saturday, and I'm still freaking out right now. I called my case managers. One of them does not know anything about disability benefits, a fact which she herself stated (both to me and to the lady who works at the SSA). She is my main case manager, fresh out of college and very new at her job. The other case manager is more experienced. She knows how disability works, but she didn't believe me when I told her about the letter I got because she said, "they cannot legally do that and they never do that". So I emailed her the letter. She wrote back, "Take your hospital discharge papers with you to that office". My main case manager, the one who knows nothing about Social Security, met me there this morning, which I needed someone to do, because:
#1 I am on the verge of a breakdown and
#2 I need these people to understand that I REQUIRE WEEKLY VISITS FROM CASE MANAGERS because that is how ill I actually am, whether they choose to believe it or not.
So, I wanted her there to tell them that, which she did. I also wanted her to tell them that my apartment was such a disaster that the case management department had to, for the second time, pay someone to clean it for me while I was in the hospital, so I would not get evicted, because my activities of daily living were so poor that it got into that bad of a state. But she never mentioned that to the woman at Social Security. I wish she was more experienced, so she could have understood how important it was to explain the extent of how sick I've been. She is kind, and I appreciated her being there, but she was really unable to be of much help since I know more about all of this than she does.
The woman at Social Security was at first very friendly, on the surface level, much more so than the woman who has been handling my case and who, my representative had found out, is on vacation this week, thankfully. However, she was also, just like all of them, completely patronizing to me. She also clearly knew absolutely nothing about my case, which has gone on for over a year, except the notes that the horrible woman, who my representative has herself referred to as a horrible woman from her own dealings with her, has left in my file. She lectured me about how, "Disability benefits are for people who are physically unable to work".
No, disability benefits are for people who are PHYSICALLY OR MENTALLY unable to work.
During our conversation, she tried to claim such things as "You are on SSI", which is patently untrue. I have not been on SSI for many years, and I told her that. So she looked at her computer again and said, "Oh, well you were on it in 2001 and 2002, but that's not what the money you owe is for."
I mean, can we get any more stupid than this?
I pointed out to her three or four times that I am legally allowed to work part-time while being on Social Security Disability, as long as I do not make too much money, a fact she apparently thought I was going to be too stupid to know, because she kept saying, while looking at my case manager (not me, as if I was too dumb to grasp this stuff) that "Disability benefits are for people who are UNABLE TO WORK". Wrong. Disability benefits are for people who are unable to work full time jobs, but people receiving SSDI are legally allowed to work part-time. I kept repeating this. She knew it was true, but she apparently wanted to pretend it was not.
The end result of this was that she blamed my representative for the fact that my benefits were about to be canceled for two months, claiming some form that had been sent in by her had not been initialed, and lectured me as if I was a complete newbie at this, which I obviously am not, as I have been on SSDI for 15 years, until finally, I had to fill out a form agreeing to pay back money that I should not legally owe at all. However, the agreement was to pay it back at $23 per month, until it is paid off, so that I would, IF THIS FORM IS APPROVED, get my checks for the next two months.
But there is NO guarantee that this form will be approved.
I wrote down a lot more on that form that the woman wanted me to write. She said, "What are you doing to me Jennifer???!!! I told you just to write that you owe the money and you will pay back $23 a month! What are you writing???"
If I am signing a damn form, you bet your ass I am going to write the facts on the form before I sign it. I wrote that I have Schizophrenia (SSA is too stupid to have heard the term "Schizoaffective" and does not know what it means), and that I had just spent a month in the hospital for being suicidal, and that if I do not get my benefits next month, I will become homeless. I wrote that I did not know what I owed this money for, and that I had been fighting with SSA over it for over a year, and the stress had been so bad for me that I had to get a representative who is now handling my case. I wrote that I have a job, which is low-stress because that is all I can manage, that I have to work part-time because I cannot LIVE on $878 a month, which is how much I get from Social Security, and that I have a job that accommodates me by letting me take a month off to go into the hospital every year. It has actually happened more than once in the same year before, and I should have mentioned that too.
I then wrote, I agreed to pay $23 a month in order to keep my benefits.
I signed the form.
She read it and looked shocked. "OH! YOU ARE INTELLIGENT!!" She said, in a most ridiculously patronizing manner. She obviously thought that the word Schizophrenia meant stupid. While she was typing she also lectured me on how ridiculous it is to kill yourself, because "life is beautiful and there are people with cancer who have it a lot worse than you". She also said, "Look, I got this little cut on my hand this morning, but do you think I decided to kill myself over it?". She literally said that to me, and to my case manager. I wanted to scream.
When she walked away, I looked at my case manager and said, "Mental illness does not make me stupid". She said, "I know", and rolled her eyes.
After leaving there, I immediately called my representative, and gave her the information on exactly what the woman said, which according to my representative made no sense whatsoever, regarding some form that supposedly had not been initialed, which is why I was getting all my money taken away, as that form was not a form I would have ever needed to turn in, according to my representative (because I was taking notes as this lady was talking to me, and I wrote down the number of the form she said was not initialed). My representative said, "I am calling her today, and I am going to follow up in writing on Monday, and if we have to, Jennifer, we will take this to Congress, because you have documentation, and I have documentation of everything that they have ever said to me and every person I have spoken to there about your case."
I told her that the woman had left me with the advice to, "immediately return if you do not get your check next month, and bring your rent bill to prove that you are about to become homeless, so we can see if there is anything we can do."
I explained to my representative, this will not work for me, as my rent is due the day after I am supposed to get my check, which will not be in my bank account for the rent to be paid if I do not get it.
As you might imagine, I am quite upset right now.
My case manager said that she would speak with the other case manager, who I also called myself and left a voice message for about what happened. I told her to please talk to the housing department at the agency where she works, which is the agency that owns my apartment, to see if I could avoid becoming evicted next month if I do not get my check, and she said she would try to do that.
I am extremely anxious now, because I will not know until December 3rd if I am getting the money or not.
So I am supposed to live until then wondering if I will lose my car and my apartment and not have money for food or electricity for two months, until December 3rd.
This is a little too much stress for me, having just come out of the hospital.
The patronizing lady at Social Security told me that I was beautiful, so there was no reason for me to want to kill myself.
I should have said, "Oh that makes my illness completely go away now!".
I hate the Social Security Administration. They have put me through hell countless times, and I despise them, and their bureaucracy, and all the people I have dealt with there who are so completely ignorant about mental illness that they patronize everyone who has a mental illness and do not consider mental illness to be really disabling.
All I can do now is hope for the best.