International Post-Polio Task Force
at the International Centre for Post-Polio Education and Research
Englewood Hospital and Medical Center

PostPolioInfo@aol.com     http://www.postpolioinfo.com/postpolio

SOCIAL SECURITY ADMINISTRATION RELEASES DISABILITY RULING POST-POLIO
SEQUELAE.

Polio survivors win five year battle with the Social Security Administration.


The new Social Security Ruling for Post-Polio Sequelae was released on July
2, 2003 by Social Security Commissioner Jo Anne Barnhart.  "This is what we've
been working for since 1998," said Dr. Richard Bruno, the architect and
driving force behind the Social Security Ruling.  Bruno is Chairperson of the
International Post-Polio Task Force and Director of the International Centre for
Post-Polio Education and Research and The Post-Polio Institute at New Jersey's
Englewood Hospital and Medical Center.
 
In 1985 Bruno co-wrote the POMS for “The Late Effects of Poliomyelitis," the
original Social Security Administration guideline that made it possible for
polio survivors to receive Social Security Disability Income (SSDI).  However,
Bruno discovered in 1987 that the POMS had been shelved.  He traveled to
Capitol Hill to lobby for its release and, through the intervention of New Jersey
Senator Bill Bradley, the POMS was released in August, 1987, allowing polio
survivors for the first time to be eligible for SSDI.

In spite of the POMS release untold numbers of polio survivors have been
denied SSDI.  "Social Security officials, from adjudicators at local offices to
disability determination doctors and officials at the state level -- even the
SSA Appeals Council in Baltimore -- either didn't know that the POMS existed or
didn't follow its guidelines," said Bruno.  The POMS also did not include
research on PPS done after 1985, especially the finding that brain fatigue, and
not muscle weakness, was the leading cause of work disability.

In 1998 these issues were brought to New Jersey Congressman Steve Rothman. 
Over the next five years Rothman wrote to SSA officials asking that denials be
reviewed, that the POMS include the latest information on PPS and that all SSA
officials be trained about PPS and be required to follow the POMS.  In March,
2001 the Social Security Commissioner agreed to all of Bruno's and Rothman's
requests.  In spite of this agreement it has taken constant pressure from
Congressman Rothman, and in the past months from Pennsylvania Congressman Don
Sherwood, to push the Social Security Administration to finish writing and to
release the Ruling.

"The Social Security Ruling replaces the POMS for the Late Effects of
Poliomyelitis (24580.010), in that it is 'binding on all employees of the Social
Security Administration and relied upon as precedent in adjudicating cases,'" said
Bruno, quoting the Ruling.    The Ruling defines postpolio sequelae as "the
documented residuals of acute polioencephalomyelitis, caused by one of three
types of polioviruses affecting the brain and spinal cord.  No matter which
neurons are attacked by the virus, the severity of any residual deficit depends
upon how many cells within a specific area are destroyed.  Even though some
polio survivors may have had previously undetected motor residuals following the
acute polio infection (so-called "non-paralytic" polio), they may still report
postpolio sequelae later in life."

"The Ruling is more inclusive than the POMS and uses 'Postpolio Sequelae' to
describe all of the late-onset symptoms polio survivors experience," said
Bruno, "not only the 'post-polio syndrome' -- new muscle weakness in those who had
paralytic polio -- but also 'early advanced degenerative arthritis, sleep
disorders, respiratory insufficiency, and a variety of mental disorders (having)
an etiological link to either the acute polio infection or to chronic deficits
resulting from the acute infection."  According to the Ruling "any one or a
combination of these disorders...will constitute the presence of 'postpolio
sequelae'" and can be grounds for granting SSDI.

The Ruling is based on research since 1987 done by Bruno and his team at The
Post-Polio Institute and The International Centre for Post-Polio Education and
Research.  "The Ruling highlights our findings of the significant effects of
polio on the brain," said Bruno. "For the first time sleep disorders,
'problems with attention, reduced concentration capacity, inability to persist in
tasks, or memory problems' are recognized as causes of disability," said Bruno. 

The Ruling also incorporates research from The Post-Polio Institute regarding
the psychological effects of polio and PPS, saying that "traumatic
psychological experiences associated with acute polio infection are revived when polio
survivors recognize the onset of further weakness and functional loss.  Many
polio survivors endured a life-threatening infection as young children. They may
have spent extended periods away from their homes and families while
hospitalized with paralysis or respiratory dysfunction, or while undergoing multiple
orthopedic surgeries. Often they endured many months, or sometimes years, of
hospitalization and rehabilitation. The psychological effect of perceiving the
onset of further weakness, fatigue, respiratory dysfunction or joint pain, many
years following the acute infection, can be significant" and lead to
disabling "anxiety and depression...mood changes and social withdrawal."  Any of these
symptoms can be the cause of inability to work and grounds for granting SSDI.

The Ruling also recognizes that "many individuals with medically severe polio
residuals have worked despite their  limitations"  The Ruling states that
'the new onset of further physical or mental impairments (even though they may
appear to be relatively minor) in polio survivors may result in further
functional problems that can limit or prevent their ability to continue work activity.
Postpolio sequelae may effectively alter the ability of these individuals to
continue functioning at the same level they maintained for years following
their initial polio infection."

The Ruling states that polio survivors' history of symptoms and limitations
documented by their own physicians and psychologists are the primary factors
when it comes to diagnosing PPS and determining inability to work.  "The EMG and
functional capacity evaluations have been removed from the evaluation process
for PPS, "said Bruno.  "Also, the Ruling makes clear that "Consultative
Examinations"-- polio survivors being required to go to a doctor appointed by
Social Security to make the PPS diagnosis -- are only to be used if the polio
survivor's own physician and psychologist cannot answer questions about the
patient's condition." The Ruling states that only in "select cases, where severity of
the impairment is unclear, an examination by a physician or psychologist who
is knowledgeable about polio and postpolio sequelae is appropriate, if such a
specialist is available."  "Polio survivors' doctors must write a report to
SSA describing the patient's PPS symptoms and the work impairments they cause,"
said Bruno. "Written case notes or even a typed history and physical are not
sufficient.  "The doctors' reports to SSA must include "the severity of any
residual weakness, as well as the onset, pattern, and severity of any new
physical or mental deficits," using the wording in the Ruling.  A description of
current functional limitations and restrictions on physical and mental activity'
must also be included.

Even with the new Ruling there remains the problem of Social Security
personnel -- local and state adjudicators, disability doctors and Administrative Law
Judges  -- not knowing that the Ruling exists.  "Since 1987 polio survivors'
SSDI denials were not due as much to a failure of the POMS to describe
disability caused by PPS, but more to SSA personnel not knowing that the POMS existed
or not following the POMS guidelines," said Bruno.  Bruno is working with the
Social Security Office of Medical Policy to insure distribution of the Ruling
to all SSA personnel, to create an Interactive Video Training program about
Post-Polio Sequelae and the Ruling, a quality assurance program for compliance
and a mechanism to monitor the adjudication of cases in real-time to prevent
continued erroneous initial denials.  Bruno is also working to identify an
ombudsman in each state SSA office to facilitate education within SSA, expedite
adjudication, prevent unnecessary consultative examinations and inappropriate
denials, and underscore the importance of adjudicators, DDS doctors and ALJs all
complying with the Ruling.

Bruno is asking that all polio survivors and post-polio support groups send a
copy of the  Ruling to the directors of their local SSA offices.  "It is
vital that every Social Security Administration employee knows that the new PPS
Ruling exists," said Bruno.  Polio survivors applying for SSDI, and those who
have been denied, should immediately send a copy of the Ruling to the Social
Security Administration personnel working on their cases -- including
Administrative Law Judges -- as well as their Congressperson and Senators so that all
disability determinations will be based on the latest policy.

(For more information on applying for SSDI and appealing denials, go to
http://www.postpolioinfo.com/postpolio. The Ruling can be found at:
http://a257.g.akamaitech.net/7/257/2422/14mar20010800/edocket.access.gpo.gov/2003/03-16719.htm
)

"I am very grateful to Congressmen Rothman and Sherwood for their efforts and
perseverance in helping to move closer to fulfilling the promise of SSDI for
polio survivors," said Bruno.  "But, although this battle has been the won, we
still have many more to fight."  Bruno and the International Post-Polio Task
Force are continuing to work with Congressmen Rothman and Sherwood,
Pennsylvania Senator Arlen Specter and other members of Congress on a federal agenda for
polio survivors that will also help seniors and anyone with a mobility
impairment.  The agenda includes a modification of Medicare regulations to allow
polio survivors and others to more easily receive power wheelchairs to prevent
loss of arm function, no-interest loans to purchase wheelchair accessible vans
so that power wheelchair users can continue working, a Department of Justice
regulation to require adjustable-height examination tables in doctors offices
and health care facilities, establishing a waiting list preference to expedite
Section 8 housing approval for wheelchair users, declaring 2004 the
“International Year of Polio Awareness” and educating polio survivors and health
professionals about polio vaccination and PPS.   Said Bruno, "The Social Security
Ruling and federal PPS agenda may finally allow polio survivors to receive the
care they so desperately need and make the International Post-Polio Task Force
motto a reality: 

"EVERY CHILD VACCINATED.
EVERY POLIO SURVIVOR -- AND DOCTOR -- EDUCATED."

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