Sometimes in life you have to get a little lost before you are truly able to find your way.

Posts tagged ‘SSDI’

Bittersweet Victory

I had a big win recently. My request for an expedited hearing before the Social Security Administrative Law Judge was approved. We waived the right to a 20-day notice and were notified on January 21 that my hearing would take place on the 24th since there had been a cancellation. For three days there was a frantic race to get ready. A race to pull together all of the arguments and facts and answers. After years of waiting, suddenly it was a rush to pull it all together before Friday. I met with my lawyer. I spoke to my family. I got letters from friends, family members, previous doctors. And then we went.

I sat in a tiny room with an awkward setup staring up at the man who would decide my fate. He was kind and comforting and patient and reassuring. Nothing like what I had imagined. I think that I’ve just been fighting so hard for so long that it was actually a little unnerving to not feel as though I was facing an opponent in that room. My lawyer gave an opening argument. The judge asked questions. My lawyer asked questions. Then the judge started to move to the “VE,” the vocational expert. These are people whose job it is to find any theoretical job in the national economy for a theoretical job seeker with the limitations of the person applying for disability. My lawyer had explained this before the hearing and said not to get upset or defensive when he or she listed the jobs. “They always find jobs,” he told me. It’s the lawyer’s job to cross examine the VE and challenge the idea that I could do any of the jobs with my limitations.

My mother was with us, waiting outside. She was going to testify if the judge allowed it – not all do. So when the judge started to call on the VE, my lawyer said that she was there and could offer testimony regarding the nature and severity of my condition and the limitations I face. The judge looked back and said “I don’t think that will be necessary.” My heart sank. He continued… “I believe I’ve heard all I need to hear. We’ll just get the VE on the record and then rule in favor.” The world just stopped. Much like I had asked it to a million times. But this time I hadn’t asked. The judge just made it so with three words.

“Rule in favor.”

I kept hearing it. He began questioning the VE. He threw out the set of limitations that I have and asked if there were any jobs for a hypothetical job seeker with such conditions on the light exertion level (social security splits jobs up into exertion levels.) There were none, she told him.

“Rule in favor”

It kept playing in my mind. He removed some of the limitations. There were still none. This went on for a couple of minutes until he finally asked if there was any job at any level that the hypothetical candidate could do. “No, your honor. None.” I knew in my head that those words solidified what the judge had already concluded.

“Rule in favor.”

I had won. But what on earth was going on? I was shocked. That made sense. I was happy. That made sense. I was all kinds of things that made sense. But I was sad, or upset, or….something I couldn’t quite put my finger on that I knew didn’t feel good. And then it hit me. I had just sat in a room answering questions and listening to my lawyer prove beyond a shadow of a doubt that there is not a job anywhere at any level that I can do. It’s funny how living with something, and fighting to get others to recognize it is so completely different from having someone else say it or prove it.

The only analogy I could come up with was this…if you talk badly about someone in your family it’s not a big deal. You love them; you’ll get to each other every now and then. But if someone OUTSIDE of your family says anything bad about that person – WOAH! Step back – now THAT is not cool. Even if all they do is repeat what you have said, it sounds so different when they say it. Feels different when they say it. It’s WORSE when they say it. Well it felt really different to hear that VE and that judge say that I am, in fact, disabled. That I cannot work.

It took me a few days to get things clear in my own head and in my heart. I was happy. And grateful. And the initial sting wore off. I focused on the fact that it won’t always be like this and that now, finally, at least I will be somewhat able to support myself. It’s kind of strange, to be honest. Strange to get up every day and not be waging this war. I’ve been fighting for disability for so long that it still feels a bit like I’m not doing something really important every day.

There is still a lot to figure out. The final decision hasn’t been put on the record. They haven’t sent me the paperwork with my award amount and all the details. It will be a while until my benefits begin. But the judge was very clear. And my lawyer said that the VE not finding ANY jobs – that doesn’t happen. I still have to sort through my decisions about health insurance and what I’ll need on top of medicaid. But the fight is over. And I won.

I put off applying for SSDI for a long time because I refused to believe what was proven in court two weeks ago. I thought it meant I was weak. I thought it meant I had given up. I wanted to believe it was not true. But you can’t hide from the truth. At least not forever, and certainly not without consequence. I hid for a long time. And it cost me all of my money, many nights and even weeks in hospitals, and nearly my life. And it cost my family an enormous amount too. But this decision marks the start of a new reality for me and a new truth. I don’t yet know what it looks like or what it will feel like, but I am, above all things, grateful.

This has not been an easy road, or a comfortable victory. But it is a victory. One that I pray each of you plodding along in the same heavy shoes has the strength to keep moving toward, one step at a time. There are many road blocks and the system is designed to make you give up. But don’t. Keep going. Keep fighting. It is a long road. A hard road. And you are fighting for something you wish with all your heart you did not need. But you do. I do. And though it is somewhat bitter – there is still sweet victory at the end of this journey! So here’s to strength and perseverance, and to someday not needing that for which we have all fought so hard!

Getting Back on the Horse

I’ve been debating how to start this post for some time now. For anyone who has followed this BLOG, I’m sure it must seem as though I’ve dropped off the grid for no apparent reason, adopted a new identity and for the most part, abandoned writing. In truth, only the first part of that has been true. I definitely dropped off the grid. But there was a reason.

To explain that reason I have to summarize a bit of what is wrong about our social security (disability) system. And to do that, I have to explain much of what is right about our veteran’s disability system. When a member of the military has “disabilities, diseases, or injuries caused by or aggravated during active military service,” they are eligible to apply for a disability rating through the VA disability rating system. To put it very simply, for every disability, a vet gets a rating from 0%-100% and receives disability pay commensurate with their rating. If, for example, they have a back injury that is rated at 15%, an arm injury rated at 5% and a psychological disability rated at 20%, they have a combined disability rating of 40%. Over time those injuries often get worse, and the rating and pay increases accordingly. The key here is that the disabilities and corresponding compensation are not all or nothing. This system recognizes that injuries can (and do) affect one’s ability to work at different degrees. It does not require that someone be 100% completely incapable of doing any kind of work to receive compensation. THIS MAKES SENSE! And I don’t mean it just makes sense for the individual seeking disability pay, it makes sense for our economy! By providing supplementary income to those with disabilities WITHOUT requiring that they be completely incapacitated, we support actively working, tax-paying individuals and discourage fraud! 

Here’s the tricky part though…as disabilities increase, there are two potential end results for rating. If an individual has a combined 100% service-related disability, (because their condition will either result in premature death or incapacitate them), that person can either work or not work. Employment has no bearing on their rating or compensation. On the other hand, if gainful employment is restricted or not possible because of an individual’s service-connected disability, they are rated “IU” – individual unemployability. If someone with an IU rating becomes employed, the IU is discontinued. Check out this forum for an interesting discussion regarding 100% employable vs 100% un-employable ratings.

I should note that this discussion and my thoughts on this matter do not in ANY WAY diminish the respect I have for our service men and women. They put their lives on the line, leave their families behind and risk everything to protect our freedoms. I believe very strongly that we need to adequately compensate each and every vet for injuries sustained during active service. In many cases, it’s clear that we need to improve how we care for our vets when they come home.

I do, however, have some mixed feelings about the rating system. The IU rating makes sense. If you are 100% disabled, then it follows that you would be unable to work and that your compensation should reflect that. However, if you are 100% disabled but still employable, how is that 100% disabled?

One last note about VA disability. If a vet is qualified as disabled by the VA system, he or she can also apply for Social Security Disability Income (SSDI) IN ADDITION TO their VA disability income AND have their claim expedited. I have some very mixed feelings about that, however, I’ll move on to get to my point…

This brings me to the reason that yes, I did drop off the grid for an entire year, then suddenly come back talking about skin care. Our SSDI System is broken. It is flawed, poorly designed and terribly administered. To begin with, the SSDI system does not recognize or compensate partial disability. One must be deemed 100% disabled and unable to work at any job in any capacity. The Social Security Administration defines being disabled with the following criteria:

  • You cannot do work that you did before;
  • We decide that you cannot adjust to other work because of your medical condition(s); and
  • Your disability has lasted or is expected to last for at least one year or to result in death.
This is what ONE year of medical records from ONE doctor looks like. Now imagine 13 years with MANY doctors....

This is what ONE year of medical records from ONE doctor looks like. Now imagine 13 years with MANY doctors….

At first glance, that seems to make sense, right? You can’t do your old job; you can’t do any other job; your condition is a long-term thing or is going to kill you. Yep, that would definitely be disabled. But what about those who are so severely limited by their health that they can’t work enough to support themselves or their families or even to qualify for health insurance? And even if someone is 100% disabled, what is required to prove it? To examine these questions, let’s explore what applying for SSDI looks like. There are forms. LOTS of forms. Medical records. Statements from doctors. Examinations.

Here’s how it typically goes. You apply. You wait 3-6 months. You get denied. You submit your first appeal, called a request for reconsideration. You wait another 3-6 months. You get denied. (If you’re lucky, you still have some means of supporting yourself and you’re not homeless…yet.) You submit your second appeal and wait (on average) one to two years to get a date to appear before an administrative law judge (ALJ). Maybe you get approved, maybe not. Approval ratings vary state to state, examiner to examiner and judge to judge. Initial claims are approved at rates of anywhere from 5% to 35% depending on the state and the claims examiner. To put this in perspective, let’s assume that 100 people apply for SSDI benefits and 100% of those denied follow up with every available appeal (not nearly this many actually do). We’ll shoot for the middle and say that about 20 individuals are actually approved and 80 are denied.

Not disabled eh? Yeah....I'm sure that ALL of my doctors are wrong about that...

Not disabled eh? Yeah….I’m sure that ALL of my doctors are wrong about that…

Approximately 10% of claims that are appealed at the reconsideration level (first appeal) are approved. Looking at our sample group, that means that 8 more people are approved (28 total, so far) and 72 are once again denied. Roughly 50% of claims appealed at the next level and presented in front of an ALJ are approved, (though that number plummets for individuals who do not have a lawyer). So 36 more individuals eventually are approved, resulting in a total of about 64 individuals.

Does this mean that barely more than half the people applying for SSDI are actually disabled and cannot work? NO!. Absolutely not. There is an enormous amount of subjectivity at every level of decision in this system because humans are making the decisions. Disability Secrets is a great site that offers some interesting insight into navigating this complicated system and improving your chances of being approved. 

If you add up all that wait time, you quickly find that getting your SSDI claim approved will likely take 2-3 years. WOW. OK, so if you really are completely disabled and cannot work and you have to wait 2-3 years to MAYBE get assistance, what happens to you during those 2-3 years?

For some, welfare (Temporary Assistance for Needy Families – or TANF) is the answer. But here’s the catch – only people with children (or pregnant women) are eligible for TANF. So what happens to the single adult with no children? If, like me, they are lucky enough to have family that can support them through the SSDI claim process, they burn through their checking, savings and retirement accounts and rely on help from family. But what about those who do not have family that can support them? A lucky few live in towns/cities or counties that have assistance programs. But more often, they end up in shelters, on the streets, or dead. This is a flawed system. We have left a giant void that for many, becomes a bottomless pit that swallows them whole.

Now let’s go back and look at the (non-military) partially disabled individuals. Many people live with significant impairments but do not meet the criteria for SSDI. There is no support to make up for the fact that they cannot work full time, thus, they end up working part time and that of course, means no health insurance. Without health insurance they cannot adequately address their medical needs and likely worsen their existing conditions. In MANY cases these individuals’ health status declines to the point that they can no longer work at all. They lose jobs. Their credit tanks. They lose their homes. They end up on the streets. This is no exaggeration. I would, without question have followed precisely this path had it not been for my amazing family who has supported me through this process. But I am among the lucky few who have loved ones willing and ABLE to do so.

To be perfectly honest – knowing what I now know, experiencing what going through this system is actually like, and how LONG it takes, I would probably have done what many do…I would have started my claim a long time ago. Before I was truly unable to work. This, of course, is called Social Security Fraud.

We need to fix the SSDI system. We have a good working model of a system that recognizes that individuals who are partially incapacitated and cannot work enough to support themselves should qualify for partial assistance. The VA system, even with all of its flaws, is logical. It makes sense. It doesn’t leave people behind the way SSDI does. We also have to look at the fate of those single adults applying for SSDI, waiting years for their claim to be approved. We have to either amend our welfare system to extend it to those individuals, or create some sort of stop-gap measure to act as a safety net over that bottomless pit.

I have been waiting one year and four months since I initially submitted my claim. It included the initial application, all of appeal scrn shotthe required forms, examination by a SS doctor, and more than 13 years of medical records supporting my claim and several highly distinguished doctors unanimously affirming that I cannot, and have not been able to work for a LONG time. But I was denied at the first level. And denied at reconsideration. I have been waiting 8 months for my hearing with the ALJ and still have no date. We have submitted two requests for an expedited hearing based on “emergent conditions” (this request essentially outlines why it is imperative that I have my case heard immediately due to dire medical, insurance and financial circumstances). But still I wait.

My family has supported me financially and emotionally for the last several years. My gratitude to them is matched only by my feelings of guilt and my desire to be able to go back to work, to repay them, to live independently and productively. I have no idea if the judge that eventually hears my case will approve my claim or not. I know that my medical condition is clearly disabling and the physicians who care for me are unanimous in their testimony that my claim must be approved. I know that I am less likely to be approved because of my level of education. Those who have not completed high school are most likely to be approved. Those of us with bachelors and masters degrees (and mountains of debt!) – same disabilities, lower rates of approval (based on the assumption that we could qualify for additional types of employment). Great.

So – this is what I have been doing for the year that Lost On A Horse was silent. I have been fighting, clawing, struggling, begging – for assistance that I wish with all my heart that I did not need. I was terrified to write. Terrified that I would damn myself to denial by a system that is supposed to support people in my situation. Terrified that someone might found out that I was having cutting-edge surgery that could potentially lead to improvement in my health. Terrified that someone might find out that I was continuing to BLOG, to advocate for myself and the untold numbers of chronic pain sufferers, and use it as evidence that I could work, being completely unaware of what it takes for me to do this. That for some, typing up a post like this and inserting a few pictures might take an hour or so rather than days. But my name is attached to this BLOG. And the folks at the SSA dig. They dig deep. They even go so far as to surveil applicants or those already awarded benefits to find any clue that someone claiming to be unable to work actually can do something. Anything…because SSDI is, after all, ALL OR NOTHING.

Translation: "Don't bother - if you think coming to the office will do any more than staring at your computer, you're more of a fool than we thought!"

Translation: “Don’t bother – if you think coming to the office will do any more than staring at your computer, you’re more of a fool than we thought!”

Recent events though have persuaded me to come back. To speak up. To revive Lost On A Horse. So here I am. There is much to say, stories to tell, questions to ask, advice to share. But this is enough for today. Ok, realistically, for the last several days. I can’t just sit down at the computer and type out a post this long all in one shot, even when it’s already written on paper. A heavy note to return on, I know. But important. The last year and a half of my life has had a dramatic impact on my view of what is important, on politics, relationships, health…just about everything. So it’s time. Time to get back on the horse and share hard-earned lessons, and most importantly…HOPE.

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