Disability Disaster

Remember when I was finally approved for Social Security Disability? Not so fast!

My case worker had notified me on December 3 that my appeal had been approved. And that was a sweet victory! My disability date had been dtermined to be November 2007, when I was diagnosed with breast cancer. It had been agreed that with the following four surgeries, six months of chemo, being diagnosed with leukemia, failing all treatment options, and facing a bone marrow transplant, along with my behavioral health "issues", that I had been unable to work and that it was reasonable to expect that I would not be working any time soon. This included the begininning of monthly benefits as well as back-pay for the time after the five month waiting period.
The November 2007 date also meant that in just a year basically, November 2009, I would receive Medicare, a huge deal because it would help tremendously with the very long road of recuperation from the tranplant and potential hurdles along the way.

However, my file had been randomly selected for quality assurance review, delaying payment for two weeks. Just procedure. And I was almost glad because I hoped that it would be brought to their attention the ridiculous battle I had had to fight to be approved.

Nothing came. And nothing came. Then a letter arrived the day before Chrsitams Eve, dated December 15 but delayed because we had not had postal delivery due to weather. I am tempted to post the actual letter on my site so that you can read, firsthand, what it said. Not only was it an incredibly poorly written letter full of double negatives and basic confusion, it essentially brought the cheery news that although they agree I am disabled, I am not disabled according to their medical definition. The harmless quality review resulted in a reversal of their decision, and their claim that I cannot be approved because of my medical condition, but I am being considered for approval based on my mental health condition. You know, the one I have because of my medical condition? And they kindly chose a random date of eligibility of May 2008, conveniently erasing the backpay and drastically changing the date that I will receive Medicare.

It concluded that a final decision of this new determination was yet to be made and to not contact the local SSA office until notified. Well, you know me, I was down there the next morning, quite a task with our weather and roads, to speak with my caseworker. (Who, by the way, is awesome and the saving grace of this experience). She had just received the internal notice that the new decision was a go. So gone is the backpay to put towards transplant caregiver expenses and some late bills. Gone is seven months of Medicare coverage. And gone was the reassuarnce that if you fight the good fight, do what you need to in navigating a painfully slow and frustrating bureacracy, that the truth prevails. And who knows even when these payments will finally arrive/begin.

Even my case worker, and her boss, are dismayed. I of course filed an appeal on the spot. This will consist of a hearing. The SSA office gives you a list of local attorneys, but at this point I will represent myself, if I am still here. My case worker says that this stage can last years. It is ludicrous that I should have to give half my benefits to pay for a contingency-fee case. I feel that I have the truth, the facts, and the documentation on my side. The system is always running behind on their information because it is so long after submitting one's records until they are reviewed that alot can change. As long as it does not null my right to potentially appeal the next ruling, I want to go before the judge and explain the whole story. Frankly, if knowing that a person will certainly die without a transplant, and that the person might die because of the tranplant, and that the recovery is not days or weeks but months and years, if all that doesn't make me medically eligible for Disability benefits, I don't know what does.

I realize I have written a very long post, but this information is vital. I want you to know about what the system is like. I want you to know the agony that they can put you through. I want you to know that if you ever need SSA Disability, this could happen to you. I want you to know that if a person like me, who has many resources and support available to them, has to fight this hard, there are many others out there fighting and losing too. This is what my tax dollars are doing for me. This is what your tax dollars are doing as well.

I am so angry I can't convey it properly. I have learned that a SSA decision means nothing. It can easily change. I have learned that people who have subjective conditions can easily prevail over a black and white, life and death, disease. I have learned that in the time of need, the SSA isn't there. I have learned that playing by the rules does not mean success. I have learned that even when all one's focus should be on taking care of themselves and enjoying each day as possibly one of the last, instead you spend a great deal of time fighting for things which you thought were already there.

Screw them.