In my last post, I wrote about the decision I had made a long time ago to work during my cancer treatments, and then also later in my life following emergency heart surgery, and the many issues that have followed it. I mentioned that it was important to me to have the daily work distractions so that I did not sit at home worrying about the illness battles that I was facing. Only to my shock, dealing with the petty jealousies of co-workers, and often harsh treatment by management, did I realize that removing myself from that environment, even if only temporary until it was deemed that I was able to return to a normal. But sick pay would only last so long, and I would not have qualified for unemployment benefits. And face it, I needed some form of income.
In 1956, an amendment to the Social Security Act of 1934 was made to include benefits for those deemed “disabled”. The law was fairly plain and very restrictive. You had to be between 50 and 65 years old, totally disabled, and there would have to be a six month waiting period – the reason being, if you were going to be able to return to work fully, then you were considered temporarily disabled and therefore you would not qualify for benefits. Your condition had to be terminal, lead to your death, or be of “long and indefinite duration.”
I am not an expert in SSDI (Social Security Disability Insurance). I have heard the frustrated process by so many other long term cancer survivors who really, I have no idea how or why they were put through the process that they were, because their conditions were so extreme, it should have been a no-brainer. But last year, I had no choice myself, but to go down the SSDI path. While no one disputes the number of diagnosis I have as disabilities, how severe many of them are, how many will grow worse over time, or the risks that a fatal event could occur, that does not guarantee any kind of SSDI benefits. But due to corporate downsizing by my former employer in 2014, I was about to lose my job of over 17 years, of which my employer had accommodated my many physical work restrictions as required by the Americans With Disabilities Act until then, and as available work became less and less, they could no longer accommodate my restrictions, setting me on the path of disability instead.
Let me be clear. I am not seeking any kind of pity. But by the same token, I did not ask for all of these awful things to happen to me (see “Pages” for my side effects that I deal with). And the one time I dared to state to one of my doctors who treat me today, “maybe I deserve all of this shit as my trade off for surviving my cancer. After all, if I had only lived the five years, I would not have had all this stuff to deal with.” Yes, I actually said that. And then he tore my ass apart with a tirade that would have been more appropriate to come from a drill instructor at boot camp. At that point, I would never allow myself to think I deserved all the medical issues I have today, but rather need to learn to accept them and live with them.
And so, as the picture above shows, it is fairly vague, but it should not be that hard to determine someone who qualifies for SSDI, yet so many people get denied those benefits. In my 25 years in the cancer world, I have yet to ever meet anyone who has been approved for SSDI on the original application, though I am sure it has had to happen. But it was my own process which I began last year, which I have now begun to learn just how hard it is to get SSDI.
In summary, I deal with cardiac issues, lung issues, spine, muscular, gastrointestinal, neurological, endocrine, and PTSD related issues. As many of other long term survivors I know, I anticipated being denied on the application, though a close friend to me, felt I would definitely be one to be approved because of how severe everything is for me. But I was denied. I had submitted every medical document I had, letters from all of my doctors testifying to my prognosis and the disabilities themselves.
So the next step was to secure an attorney “pro bono” (they only get paid if I win my appeal), who would have experience in filling in the blanks that caused the denial. This was usually the step that would successfully overturn the denials for my fellow survivors. I was asked for any “new” or current evidence, which of course there had not been any in the last two months, which with my health, I was glad. But when I expected a more thorough review of my case, instead what I got was pure WTF! (what the heck…cleaned up). My reconsideration was denied on the basis of my original denial – I could communicate, I could handle normal stress, and I could take care of myself. The stress thing threw me for a loop, and the local Social Security Office was going to see how I handled abnormal stress, which is a huge concern for me.
Eventually I would have a supervisor come out and talk to me, to try to calm me down, to explain the process. He supports my case and my reasons for getting SSDI, and feels that at some point, I will get approved, but it is not up to him, I have to go through the process. I am paraphrasing, but here is how I took the explanation.
I was denied on the original application because I did not meet the definition of 100% disabled. Now by looking at the law that was written in 1956, is said nothing about being 100%, just that it would have to be for a long duration or leading to death. But something happened in 1959, the law changed after a law suit was filed resulting from a denied application, and the applicant lost. Before I get to that, it was explained to me by the supervisor, that it is still up to the person reviewing the application, but if it is denied, the person reviewing the application most likely denied me based on the letter of the law as of 1959. And then the supervisor began to explain to me, the changes in the SSDI Act in 1959.
Dave Baldridge of Kentucky, a coal miner, had his career terminated by his employer due to what his employer even agreed, was a disability related to his working in the coal mines. But the government disagreed, and Baldridge pursued multiple actions of appeal only to eventually lose. While many today win their appeals, with better representation and better demonstration of their disabilities and their ability to have gainful employment like they had when they were not disabled, it was the decision of Baldridge’s case that led to nearly everyone being denied SSDI on the first step of the application process.
A dreadful and disgusting example the supervisor gave me of someone who is sure to be denied SSDI? An Iraq war vet who gets his leg blown off during battle does not meet the 1959 definition of completely disabled. While no one will argue that he is disabled, the SSA will claim he is not 100% disabled and therefore should be able to find gainful employment. But what happens when you cannot find that employment?
Alright, so it is disgusting enough how many cases we as human beings feel would be legitimate cases for SSDI actually get turned down because of this outdated law, it was during the first step of the appeal process which baffled me completely. This was the stage where many of my other fellow survivors dealing with their effects would end up having their appeals won. And I figured with everything that I had submitted, that I would end up being approved also. But again, I had been denied. An here is what had happened.
The supervisor explained to me, that in spite of all the documentation I submitted, and definitely supported my arguments, the person reviewing the application probably never even looked at the documents, because based on the information on the application alone, I did not meet that 1959 definition. My attorney requested all the information again from all my doctors, which the SSA already had. But for some reason, the paperwork did not arrive in time, before the reconsideration was ruled, and again, I was denied because no new information had been submitted in time for the consideration.
I blew a major gasket. THEY HAD ALL THE MEDICAL INFORMATION ALL THE TIME!! I SUBMITTED ALL THAT PAPERWORK WITH THE ORIGINAL APPLICATION!! The supervisor understood my frustration at what I definitely considered splitting hairs. Had the SSA officially received the second set of documentation that they already possessed the original, there was a likelihood that my case would have been dealt with then and there.
And so, just like Baldridge, my case is headed for trial. And the amazing thing is, that in spite of all the appeals that have been won by going through the lengthy and tedious and costly appeal process, the ruling in 1959 is still what drives this process instead of updating the law.
We pay for this benefit when we work. That is one of the requirements, you had to have worked for a certain time. Which I have been employed for over 34 years. And through no fault of my own, I have multiple disabilities that restrict me from getting gainful employment. I have been very clear on this blog the amount of physical restrictions I have when it comes to working. And they will never get better, only gradually get worse. In some cases, some will need to get bad enough to deal with that the risk of correction outweighs the risks of a fatal medical event.
So after all this, my point is this… to those of you who are going to be dealing with an illness or disability that is severe enough that you expect to not have an income or health benefits, start the process as soon as you can. You cannot afford to add the stress of appeal after appeal fighting for what you will hopefully be awarded. The stress you will face will only aggravate your condition and make things worse. I tried to align myself with doctors and other people who have experience in submitting applications, but it may actually be better to go right through a disability attorney directly who have more experience with this law.
This is an incomplete post. You’ll have to stay tuned for how this turns out.