Guilty until proven innocent:
Dealing with a flawed SSDI Application process
© copyright 1996 Mary Schweitzer
http://www.cfids-me.org/disinissues/ssdiflaws.html
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 unroot all those fakers in their system, and
only found 6. 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 chronic
fatigue syndrome (or CFIDS) and fibromyalgia. 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 this disease.
There is significant
evidence of the significant physical destruction this disease syndrome (as
the assistant secretary of HHS calls 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 devestating 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. There are 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:
What percentage of people
applying for SSDI would you estimate are really cheaters? And what
percentage are truly disabled?
What is the cost of the
current process in terms of actual $$s and human costs (of having to wait
and wait for an income while you go through long processing and several
appeals, of a disabled person having to live off family and friends -- or
perhaps end up on the street -- because they have no income)?
What are the benefits (how
much money has the government saved by refusing to accept evidence from the
patient's own physician, for example)? And at what point to the costs exceed
the benefits?
Part of the answer lies in
what percentage of applicants you think are really disabled, and what
percentage are cheaters.
Which brings us back to why
the current political climate towards those on disability insurance is
insulting. Because the degree to which you are willing to accept placing so
many hurdles in the way of acceptance depends on the degree to which you
think there's a high percentage of applicants who are cheating and need to
be weeded out.
It is also a matter of
judgment as to what percentage of applicants who are denied (or required to
wait months and years) should have been granted disability in the first
place.
After 20 years of finding
ways to cut back on "welfare, which do you think is the greater problem?
I think a sober examination
of the process would show that we have clearly reached the point where the
costs of the convoluted application process to society as a whole greatly
exceeds the benefits.
Social security workers
are overworked and underpaid. Overwhelmed. They cannot deal with
complexity because they do not have time to deal with complexity.
Another case where the
inefficiency is so great that it's counter-productive. If they used the time
and resources to get it straight the first time around, there wouldn't be so
many appeals, and appeals cost the government $$$$s.
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, 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. 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.
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. 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's people yatting 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.)
And try to have a support
network. And don't let the bears get you down.
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