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Guilty Until Proven innocent: Dealing with a Flawed SSDI Application Process

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The Social Security Disability Insurance system, which is supposed to protect workers from suddenly losing all sources of income with an unexpected disability, is seriously flawed and becoming more so.

There's a widespread national myth that people are "faking it"

I understand that Connecticut spent over a million dollars to uproot all those fakers in their system, and only found six. Real cost efficient. You would think those economists who like to argue that it isn't worth the cost to eradicate that least little bit of pollution would also maybe occasionally argue that it isn't worth the cost (both human and bureaucratic) to be so fixated on that last cheater somewhere that:
a. The system spends more than it saves by finding them; and
b. Real people with real disabilities, and their real families, suffer.

Be that as it may, the system is set up to be ridiculously suspicious, and makes you prove that disability.

We are assumed guilty and must prove ourselves innocent

The system is not set up for helping patients with immuno-neurological disorders such as Fibromyalgia and Chronic Fatigue Syndrome (or CFIDS). I do not know what your disability is, but mine is a very serious neurological illness that the CDC decided to call “Chronic Fatigue Syndrome" (after nicknaming it “yuppie flu” and then “chronic Epstein-Barr Virus”) when they “discovered” it in the mid-80s – despite it's already having a name, at the time, for three decades, in Canada and Britain: Myalgic Encephalomyelitis, or M.E.

They didn't like the “itis” part because they weren't sure it was precisely an inflammation. So instead we get a name that is a total redundancy: like calling viral pneumonia “tired” syndrome because that is one of its main symptoms. Or calling diabetes “thirsty, passing out, and things don't heal” syndrome. The upshot is this: In a system that doesn't want to believe you in the first place, I have a disease that has a name that sounds pretty silly itself.

There is no blood test that will "prove" an individual has [such a disorder]. There is significant evidence of the significant physical destruction [it wreaks] on our immune, neurological, cardiovascular, metabolic, and endocrine systems (chickens and eggs; no one knows which comes first; it's all intertwined). No one doubts this is a serious and devastating disease.

But you can't prove that you actually have it with a simple yes/no test. It is diagnosed by ruling out some other very serious diseases, and then symptomatically. The symptoms are pretty severe – if you have them, you're damn sick no matter what they call it. But that's “subjective.”

So, in the above climate, where everybody is assumed to be cheating (which I consider a profound insult to my personal integrity and everything I stood for in my life), if you have a disease that can't be “proved” in any single individual beyond a doubt, you are in for the most humiliating treatment from those who assume that a sane person would actually “fake” this hideous lifestyle. Or worse, those who are quite sure that you “think” you have it, but you're really imagining it (“somaticizing”) and all you need is some exercise.

A disease is not a disability. “Disease” is a medical term. “Disability” is a legal term. The whole exercise is to prove disability. This is why you need a doctor who understands the purpose of the forms. What does it matter if I have demonstrable autonomic nervous system dysfunction, significant metabolic abnormalities that prevent proper aerobic processes from occurring, and antibodies attacking my own thyroid? That's all a big “So What?” What they want to know is, what can I do and what can't I do?

With a disease such as my own, there is variability from day to day, hour to hour. At my worst, I am bedridden, too ill to read, too ill to use Internet. I lie there in a darkened room and listen to music or a movie on videotape. It takes immense physical effort to reach out for a glass of water on the nightstand, let alone to actually get up and go to the bathroom. The relief when I have accomplished such a task is indescribably immense.

But if I am very, very careful to monitor my activity, to watch what I do, I can often be semi-functional for a short period of time. I can go to a basketball game, if I'm dropped off at the entrance and go straight to my seat. I can visit my parents. I can go to a restaurant. I can do this (be coherent for short bursts on Internet). I have been able to function up to three days in a row attending a conference with old friends, if I stay in the hotel where the meetings are and don't go anywhere at night. And then I collapse (see previous paragraph for description) when it is over.

Three days is about my limit: on the fourth my knees buckle. That I can do it for very brief periods, and I'm not always sure I can (had to cancel out on meetings I was invited to last weekend; had to skip Sunday's basketball game and tonight's as well) just does not fit the forms.

They want to know: How much do I have to lift at my job? Get real! I was a college professor! (I weighed my briefcase with bluebooks and notes in it – 10 pounds, actually!) The forms do not ask the right questions.

The experience is so humiliating. At a time in your life when you need to be saying to yourself “It's okay; I'm still a human being; I still have something to offer the world; I'll look on the positives” – you have to over and over again say to people “I can't.” You have to keep looking at what you could do, and remember that you can't do it now. In my case, it means having to confront my career being in the toilet after fighting so hard to get to where I had gotten, to where things were bearing fruit. Over and over and over again. It is a continual exercise in humility.

As someone who worked hard, honestly, and honorably – and God, I had a great job – it's very difficult for me to say, “I just can't do it. Can't.” The word can't never used to come out of my mouth. I want to say, "Well, maybe I could. Maybe I could try. On a good day I think I could.” Because that's who I am; I always tried.

I think that's who a lot of us are. I think it's really hard for most Americans to have to say to themselves – let alone a bureaucrat or a piece of paper – “I can't. I just can't. And trying will make me worse, and there will be even more things I can't do.”

When I was a freshman in high school, the state orchestra came to play, and I had been asked to perform a piano concerto with them. Earlier in the day, I jammed my pointer finger playing basketball in gym. The nurse put a splint on it and said I mustn't take it off. I walked out of her office, into the bathroom, ripped off the bandage and the splint, and I played. My hand was a balloon that night, but I played. I did it. I did not say “I can't.”

But if it had been a stress fracture instead of a sprain, and I had pretended it wasn't there, I could really have screwed my hand up. A serious disability is like a broken bone, not a sprain. You can't pretend it's not there. You can't will your way out of it. Believe me, if I could have, I would have. But they don't know that: they don't know who you are. What you were. They don't care.

The essence of the problem lies in poor probability estimation

[From the system’s perspective] There is a pool of applicants. Some percentage of that pool of applicants is cheating, either knowingly or not. That is, this percentage wishes to gain disability payments but could really be working instead. Another percentage is what we will call the “truly disabled” – persons who have applied because they really cannot work, and they need an income.

You do not know from a list of names which is which – who belongs in which pool – so you must find ways to guess at it. (In economics we call this an information asymmetry: one party to the bargain has more information than the other.)

The harder you make it, the more evidence you require, the more evidence you refuse to accept (subjective evidence), the greater the probability that you will succeed in accepting fewer cheaters. But you will also turn down increasing numbers of honest people.

Even if you do not turn them down in the end, what does a person live on for months and months, even years, while applications and appeals are being processed? If a person has applied because they genuinely cannot work, exactly what are they supposed to do if the process itself takes so long?

Were the decision up to me, I would take the word of the applicant and two doctors: the applicant's family physician and a specialist. And I would take all that money that goes into all that paperwork, and all the appeals, and all the reprocessing, and spend it to find out who is cheating, be they doctors or patients. And prosecute them to the full extent of the law. That is what it would mean to be innocent until proven guilty.

People have claimed to me that I could fake my disability for the short period of time of an interview. Aside from the fact that I really couldn't fake being this disabled, what does that really mean? That is implying, then, that I am a liar and a fake. Now, why should I find that insulting?

People have said that Social Security or private insurance can't just take my doctor's word because “it's just someone's say-so.” Well it's not. My doctor is a specialist with a reputation to protect. She is not “just someone.” She also happens to have expertise in the particular area of my disease. When you say it's “just her say-so,” you are impugning not only her integrity, but also her professionalism as a doctor.

What percentage of the population do you think cheats like this? Do you? Does your doctor? What does it mean to assume from the start that it's just someone's “word” and that word is no good?

And that is really the bottom line here – what I began with

n What percentage of people applying for SSDI would you estimate are really cheaters? And what percentage are truly disabled?

n What is the cost of the current process in terms of actual dollars and human costs (of having to wait and wait for an income while you go through long processing and several appeals; of a disabled person having to live off family and friends, or perhaps ending up on the street, because they have no income)?

n What are the benefits (how much money has the government saved by refusing to accept evidence from the patient's own physician, for example)? And at what point to the costs exceed the benefits? Part of the answer lies in what percentage of applicants you think are really disabled, and what percentage are cheaters. Which brings us back to why the current political climate toward those on disability insurance is insulting. Because the degree to which you are willing to accept placing so many hurdles in the way of acceptance depends on the degree to which you think there's a high percentage of applicants who are cheating and need to be weeded out.

It is also a matter of judgment as to what percentage of applicants who are denied (or required to wait months and years) should have been granted disability in the first place. After 20 years of finding ways to cut back on “welfare,” which do you think is the greater problem?

I think a sober examination of the process would show that we have clearly reached the point where the costs of the convoluted application process to society as a whole greatly exceeds the benefits.

Social security workers are overworked and underpaid – overwhelmed

They cannot deal with complexity because they do not have time to deal with complexity. Another case where the inefficiency is so great that it's counter-productive. If they used the time and resources to get it straight the first time around, there wouldn't be so many appeals, and appeals cost the government money.

And this is not a private company; this is our government. If the effect of the inefficiency at the first level is that deserving people give up, and are denied the benefits that they and their families have been paying into; if the taxes that we all put into the government are used to deny a benefit that we thought government was all about – then we are being cheated, all of us.

“Saving money” was not a big concern in World War II. Winning the war was the first priority. Wouldn't have done us much good to save money if we'd lost the war. We understand that defense serves a public need (survival). Social Security is supposed to serve a public need as well, and if high-paying taxpayers get a break on their taxes because deserving people have been cheated out of what the government has been directed to do by our elected representatives: We, the people, are being cheated.

Okay, the system is flawed. So, what do you do?

Well, practically speaking, keep in mind that you are trying to communicate to the government the reality of your situation. If you are too disabled to perform at work, then figure out how to communicate that. Also [recognize that] the foot soldiers in the Social Security are not your enemy. They're just overworked, and the tasks they have been assigned do not allow them to evaluate your situation with efficiency. Be nice to them, and don't expect them to be able to do things they can't.

n Your doctor is the first step. Your doctor needs to explain not only what you have, but how it affects you. It is amazing how many doctors do not understand this. They assume that any intelligent person would know what the diagnosis means. Wrong. They have to explain it. And doctors aren't always good at that.

n A good lawyer is another step. Not because you're out to cheat the system in any way, shape, or form. But because a good lawyer is trained to communicate what the system needs to know about you. That's his/her job.

n Finally, you have to keep appealing. With my illness, at least, people often lose the first round for the simple reasons listed above: the forms are not appropriate; they don't ask the right questions so they don't really have the right information; the caseworkers are way too overloaded to be able to sit and figure out a very weird looking application; and there are people yapping at them constantly to watch out for all those supposed “cheaters.” Every round you get higher up, you get more of a chance to communicate the situation. By the fourth appeal, you finally get to talk in person to someone who is taking the time to listen. And is paid better and not so overloaded.

(But by then, you really should have a lawyer on board to bridge the communication gap between the realities of your life and the parameters of the bureaucracy.)

n And try to have a support network. Don't let the bears get you down.


© copyright 1996 Mary Schweitzer. Reproduced with permission from Mary Schweitzer’s Web site: Life with ME-CFS Essays, at http://www.cfids-me.org/marys

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4 thoughts on “Guilty Until Proven innocent: Dealing with a Flawed SSDI Application Process”

  1. BabyMena says:

    Thank you for your letter of encouragement and insight. It was extremely helpful and said everything I have been feeling and thinking. I have just encountered my first “denial” and was feeling very anxious. Your words of wisdom have shown me I am not alone. I personally struggle with “disabled” being something something you can see or a common illness – not “fat lazy girl syndrome” as I call cfs as this is how it has made me feel over the last 4 years. I don’t know how some of you have done this for so long and have truly been pioneers in this disease, I am very frustrasted with a recent relapse as I thought I had it all under control after 2 – silly me. Like you, hard to give up a job you love and have taken pride in, a work ethic for something you don’t understand. I have a 9 year old that doesn’t understand why mom doesn’t play like I with him like I use to. However, I do know I am blessed as it could be worse, I have my “good days” which I do way too much and then crash on others. Still trying to learn the balance and change of lifestyle. Seems to like I am a whinner when I have all my body parts (although they hurt like heck) — where is the balance??

    Anyway, thanks again… you were truly inspirational.

  2. nettie7 says:

    Thank you for so eloquently explaining what I have felt for the last 6 years. I had to give up a job I loved because I physically and mentally could not perform my duties as I had before.

    After being denied the first time around, I was ready to accept that I would not be granted benefits. My husband, who has always been my biggest supporter, insisted that I appeal. I was denied again. Finally, I was granted benefits after hiring an attorney and going to a hearing. The process was exhausting and degrading.

    My advice to anyone applying for SSDI is to be persistant. One SS worker told me that almost everyone is denied the first time in hopes that they will give up. Don’t give up!

  3. Iamnotmyillness says:

    What I find frustrating is the lack of common sense with respect to the process. I am still waiting for my first appeal, but I was disgusted that my first rejected stated that the agency believed that I had FM/CFS but that they thought I suffered from “discomfort” not “pain”. Heaven knows what they were basing this on – certainly not the reports that I had from multiple doctors and the reports from my previous flares.

    But what really astounds me is that they actually hold a person’s level of achievement against them — something which I find completely counterintuitive. Someone who, like the author, is a professor with I am assuming somewhere in the ballpark of 11 years of education would not “fake” illness so that they could con the government out of what would probably amount to 25% of their current earnings. I could understand a certain amount of skepticism where someone who is making lets say 20K a year might could claim CFS or FM, stay home and clear 15K a year to do nothing, but the higher the person’s income and potential career trajectory the less likely they would be to try and cheat the system. Instead the panel looks at this person and decides that since the claimant is educated and successful that there must be some sort of job they could perform on a regular basis.

    In my case, before my illness I was renting a nice townhouse, was able to drive, had an active social life and a great job as a fundraiser. Now I am living in my parent’s basement, rarely go out, and have to rely on a local service instead of driving myself where I want to go as my symptoms have left me with limited range of motion and, when I get extremely fatigued, poor reaction time. I cannot imagine a situation where someone under 40 would forfeit independence and a career in order to scam Uncle Sam out of a fraction of their previous earning potential. As I said to the case worker, I spent a small fortune and 4 years in college to prepare for my career. In order to break into this type of work, I worked round the clock to build my reputation and now, when I am starting to really get somewhere I am going to chuck all that groundwork to fake an illness? And in faking this illness I am going to take on massive debt to try all sorts of different therapies, get poked like a pin cushion repeatedly to get a better understanding of what is happening with my body, and take an enormous quantity of “unneccesary” drugs and supplement to treat my “fake” illness. Common sense would tell anyone really looking at my file that I must truly be ill.

    I also like the authors point about the testimony of physicians. Surely if a state like CT has one million dollars to track “cheats” they could certainly track whether any particular doctor has an unreasonable number of clients who are claiming complete disability.

  4. MiMiL says:

    It is so very sad that the system has gotten to this….
    There are people out there who are not able to work and the system has failed them….this is a BIG PROBLEM….
    Why on earth does the government think people like getting the small amount of money that they are entitled to instead of going to work every day and getting paid a larger salary?

    But this is how the system works…..you pay for the benefits….but they DO NOT WANT TO GIVE THEM TO YOU….

    The government is as bad as the INSURANCE COMPANIES….who DO NOT WANT TO TAKE RESPONSIBILITY EITHER….so very sad…


    I bet the article is so right….they spend more money trying to deny people’s benefits and what they are entitled to than if they had paid them in the first place….so very sad that it has come to this….

    CORRUPTION is taking over AMERICA…..

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