Getting SSDI for "The Late Effects of Poliomyelitis"

Dr. Richard L. Bruno

Chairperson, International Post-Polio Task Force
and
Director, The Post-Polio Institute
Englewood Hospital and Medical Center
Englewood, New Jersey 07631
(201) 894-3724
Toll Free: 877-POST-POLIO
PPSENG@AOL.COM

<< I had polio in 1952 and one leg has always been in a long leg brace. I am
a computer analyst and now have severe fatigue. I fall asleep at my
computer. But from what I read on the Internet, everyone who had polio gets
denied for Social Security Disability, even when they hire a lawyer and
appeal the denials. Either I will get fired or I just wont be able get out
of bed and go to work. I have no choice but to keep working. >>

You do have a choice! It is not true that it is Social Security
Administration (SSA) policy to deny Social Security Disability Income (SSDI)
payments to polio survivors. In 1985 we wrote the document that allows polio
survivors to get SSDI, called the POMS for Evaluation of the Late Effects of
Poliomyelitis (24580.010). In 1987, we worked with Senator Bill Bradley to
force SSA to release the POMS, which is when polio survivors started getting
SSDI. What's more, in 1999 SSA agreed to our request to convert certain
portions of the POMS into what are called "Rulings" that bind administrative
law judges decisions about disability for polio survivors. SSA is also
considering extension of the POMS and is reviewing one hundred polio
survivors' SSDI denials. SSA can and does grant SSDI for polio survivors.
What's more, not one of our patients has ever been denied SSDI. Why? It's
all in the details And you don't need a lawyer to get SSDI:

1) Download and read the POMS for "The Late Effects of Poliomyelitis" from
the web site
(http://members.aol.com/harvestctr/pps/polio.html)

2) Ask the Social Security Administration office to mail you the SSDI
application form (SSA-3368-BK). Tell the SSA office you can't come in to
pick up or fill out the forms because you "physically can't" make the trip.

3) There is usually a phone interview before or just after you get the
forms. This is not a big deal. SSA just wants to briefly hear why you think
you're disabled and collect general information. But get the name, phone
number and address of the adjudicator working on your case, the head of that
local SSA office and the head of the office where your case will be decided.
You will be asking your Congresspeople to write to these individuals.

4) Before the phone interview and before you fill out the application form,
make a list of work-related disabilities and symptoms. On one side of a piece
of paper list the things you can't do that are job related (e.g., can't stay
awake at your desk, can't focus attention, have to read the same paragraph
over and over, can't lift or stand or carry). Then, on the other side of the
page list the SPECIFIC symptoms that prevent you from doing the job related
activities. Try to use the wording in the POMS (e.g., "I can't focus
attention because of severe fatigue; I can't stand for more than 5 minutes
because of left leg muscle weakness; I can't walk for more than half a block
because of loss of endurance"). Mention the number of time you have fallen
and if falls have increased in the past year (Falls or "being unsafe" on your
feet are required for Medicare to pay for PPS treatment. Medicare starts two
years after you get SSDI). Mention times you almost fell asleep while
driving. Be brief and clear in describing the symptoms and limitation.
Remember: for every work-related problem, describe the symptom that disables
you; for every symptom, tell what task it prevents you from doing.

5) Do illnesses, injuries or conditions" limit you ability to work? This is
the only thing SSA wants to know. Avoid the kitchen sink approach. Don't list
everything that has ever happened to you, polio-related or not. Limit your
answers to illnesses, injuries or conditions" that limit your ability to
work. The POMS says "old records are not required," so you don't have to
have records of childhood surgeries or even hospitalizations for polio.
Also, do not include records of illness or hospitalizations you have had as
an adult unless you have a condition that also limits your ability to work .
If you are not disabled from work by allergies, an ulcer, a hip replacement,
high blood pressure, osteoporosis, successfully treated sleep apnea, a heart
attack -- even a heart transplant -- do not list those diagnoses, the
medications you take for them, hospitals where you were treated, or the
doctors you saw for them. Don't even list blood tests or X-rays you've had
unless they directly relate to the "illnesses, injuries or conditions" that
limit your ability to work. SSA reviewers will sometimes look at the first
doctor's report -- maybe a note from your GP of 5 years ago -- that says "Had
allergy shot. No other problems" and deny you SSDI for PPS because you have
no disabling symptoms. If you have "illnesses, injuries or conditions" that
do not limit your ability to work, SSA doesn't need to know about them.

The more doctors and conditions and tests you list, the more likely it is
that SSA will not even get all the reports, making the process take longer
than it needs to. The best thing you can do is list only one doctor -- your
PPS doctor -- who knows about PPS and will write clear reports about your
inability to work due to specific PPS symptoms. You should also ask your
doctor to read the POMS before writing his report for SSA.

However, if you have PPS and then had a heart attack, and you now have
limited stamina because of PPS and because your heart is not pumping enough
blood, you have two conditions that together disable you from working. In
this case, list your PPS doc and your heart doc. You can have several
conditions that add together to cause a work disability. Also, it is
important that each doctor write a brief cover letter saying that you are
work disabled and why, and not just dump all their office notes on SSA.

6) List home related limitations in the same way as work limitations, e.g.,
"I can no longer do laundry, shop, cook, yard work, because of fatigue and
muscle weakness. Now my husband/wife/children have to do these jobs." SSA
wants to make sure you are limited on the job and at home.

7) Use the "In spite of..." argument. Mention assistive devices you use,
especially new ones, and that you still can't work "in spite of" using these
devices, making necessary changes at home and getting reasonable
accommodation at work (e.g., "In spite of getting a long leg brace that I
was able to discard when I was 10 years old, using a wheelchair for the first
time in my life, getting a stair-glide in my house, and sleeping for 30
minutes at lunch, leaving work early every day, my fatigue is still
increasing and I fall asleep at my desk ").

8) Use the wording in the POMS. If you work at a desk, brain fatigue will
likely be the cause of your work disability. If you do physical work or type
at a computer, physical fatigue, loss of endurance, or specific leg, arm,
hand or muscle weakness may be the cause of your work disability. Stay away
from mentioning any type of pain, especially back pain. It usually doesn't
help to mention joint or muscle pain even when it is caused by work-related d
uties or is associated with muscle weakness, because it is almost impossible
to get SSDI due to pain. Also, never mention depression, anxiety or
medications you take for them unless these symptoms prevent you from working.
Depression is an automatic rejection unless you live in a mental hospital.

9) In the "Remarks" section at the end of the application, briefly summarize
your answers and describe your work disability as caused by your specific PPS
symptoms, again linking each work limitation to a given symptom. Also,
mention long-standing polio "disabilities" that are not problems. SSA
decides that you are work disabled based on your levels of skill and
schooling. If you load trucks and graduated from the 8th grade, SSA won't
expect you to go to college to get "sedentary" career. But, if your are a
college grad and have trouble walking, SSA will say you have the education
and skills to do something that doesn't require walking. Some people with
severe fatigue, but who have always used a leg brace, have been denied SSDI
because SSA said, " Your leg has always been paralyzed and should not affect
your working at a desk job." You should say something like, "The fact that I
have always used a long leg brace and that my arm has always been weak has
nothing to do with my disabling post-polio fatigue today."


10) SSA can ask for what's called a "Consultative Examination" if there is
not enough information in you're doctor's reports to determine if you are
work disabled. However, many polio survivors find SSA sending them for a
consultative examination to a neurologist -- or even a psychiatrist -- who
knows nothing about PPS . SSA policy states that your treating doctor is the
"preferred source" for the consultative examination, unless your doctor's
records contain "conflicts or inconsistencies" or "prior experience indicates
that the treating (doctor) is not a productive source of clear information."
You have the right, and SSA regulations prefer, that you to go back to your
own doctor for a consultative examination. The local SSA office has to have
a reason to send you to other doctors. Also, the POMS says that an
electromyogram (EMG) should be done only in "very rare and difficult cases"
and should not be done unless your doctor with the SSA doctor find the test
"essential to establishing current functional status." Since there is not
one study in the medical literature showing that a clinical EMG is diagnostic
of PPS, there is no situation when an EMG could establish "current functional
status."

11) You took the time to vote, so put that vote to use. SSA gets very
careful when they know your Senators and Congressperson are watching over
their shoulder. Send a letter like this and attach the POMS:

__________________________________________________________________

Dear Senator and Congressperson:

I am a polio survivor of the 19XX epidemic. I have been working for XX years
as a YOUR JOB but am now unable to work because of Post-Polio Syndrome (PPS).

Many polio survivors are being denied SSDI because local SSA offices do not
know there is a policy allowing polio survivors to receive benefits, the POMS
for the "Late Effects of Poliomyelitis" (please see enclosed). The Social
Security Commissioner is aware of this problem and has directed that a ruling
be written to prevent polio survivors from being inappropriately denied SSDI.
However, that ruling has not yet been written.

Would you please contact the SSA ADJUDICATOR'S NAME and HEAD OF THE SSA
OFFICE at the YOUR TOWN Social Security office, 555-555-5555, at THIS
ADDRESS. Please ask them to consult the POMS for PPS and make a decision
about my disability based on the SSA policy.

Yours truly,

__________________________________________________________________


Include copies of your letters to the Congressperson and the POMS with your
application. Call your adjudicator at the SSA office about once a month to
see where things stand. It takes about 6 months for you to get your first
check.

12) Since it's the government, mistakes do happen and you may get denied.
If you are denied, read the reason for denial, which may be because of the
adjudicator's not having read or misreading the POMS. Find out the specific
reason for the denial and appeal immediately, discussing with your doctor the
specific reason for the denial and asking him/her to also write a letter.
Write your Senators and Congressperson immediately:

__________________________________________________________________

Dear Senator and Congressperson:

I am a polio survivor of the 19XX epidemic. I have been working for XX years
as a YOUR JOB but am now unable to work because of Post-Polio Syndrome
(PPS). But I have been denied SSDI.

Many polio survivors are being denied SSDI because local SSA offices do not
know there is a policy allowing us to receive benefits, the POMS for the
"Late Effects of Poliomyelitis" (please see enclosed). The Social Security
Commissioner is aware of this problem and has directed that a ruling be
written to prevent polio survivors from being inappropriately denied SSDI.
However, that ruling has not yet been written and my SSDI has been denied.

Would you please contact the SSA ADJUDICATOR'S NAME and HEAD OF THE SSA
OFFICE at the YOUR TOWN Social Security office, 555-555-5555, at THIS
ADDRESS. Please ask them to consult the POMS for PPS and make a decision
about my disability based on the actual cause of my not being able to work,
LIST CAUSE(S), and on SSA policy.

Yours truly,


__________________________________________________________________

If you are denied, send copies of your application, medical records and
denial notice from SSA to Dr. Sandra Salan, the neurologist at SSA who is
reviewing polio survivors' denials:

Dr. Sandra Salan
Office of Disability
Room 3A9
Operations Building
6401 Security Blvd
Baltimore MD 21235

You have a right to two local appeals and then a hearing before an
Administrative Law Judge (ALJ). If you follow this procedure, you won't need
a lawyer even for the appeal. About 90% of the cases that come before the
ALJs have their denials overturned, so there is a light at the end of the
tunnel.

Applying for SSDI can be a kind of "game" that you can win if you follow the
rules!