[nfbmi-talk] Low-Vision Specialists: An Impediment to Meeting Patients' needs

[Larry Posont]

National Federation of the Blind of Michigan
20812 Ann Arbor Trail
Dearborn Heights, MI 48127

June 27, 2013

Dear Michigan Federationists:

     Please read this article in the July Braille Monitor written by
Sean Ziadeh. He mentions the Michigan Commission for the Blind several
times. The article shows why rehabilitation services need to be based
on consumer choice and need to be consumer driven.

Sincerely,
Larry Posont
President
 National Federation of the Blind of Michigan
 (313) 271-3058
 Email: president.nfb.mi at gmail.com
 Web page: www.nfbmi.org

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         Low-Vision Specialists: An Impediment to Meeting Patients'
                            Rehabilitation Needs?
                               by Sean Ziadeh


      From the Editor: Sean Ziadeh is a relatively new member of the
National Federation of the Blind of Illinois. As he relates in the
following article, he knew he had a problem before the medical profession
did, and, once they understood that they could not give him back his lost
vision, they were done with him. We have heard this story many times, and
the problem for most blind people is, not that they have been told that
their vision can't be restored, but that they are shown to the door with no
discussion of resources, no examples of successful blind people, and no
instructions about where to turn for information and inspiration. Here is
how this story played out in Sean's life:


      I was eight years old when it became apparent that I had a vision
problem. Our family eye doctor was puzzled. He could not detect an issue
with the eye. Based on my reading of the eye charts, however, he claimed
that I should not be able to see an eighteen-wheeler coming down the
street. He could not reconcile his test results with my mother's testimony
that I rode my bike throughout the neighborhoods, played video games, and
was an avid racquetball player. His conclusion: I must be lying about what
I could see to gain special attention from my parents.
      Unwilling to believe my poor vision was an elaborate hoax for
attention, my mother took me to various vision specialists. For the next
three years I was drawn out of school for an array of tests--everything
from having probes attached to my temples, to immobilizing my head before a
monitor for hours at a time, to CT scans. Often my mother dealt with a
young child frustrated by having to go to another appointment. I did not
understand what they were doing to me; all I knew was that I wanted it to
end.
      I was about thirteen years old when my parents and I received the
definitive answer from a neuro-ophthalmologist. I was diagnosed with
congenital optic nerve atrophy. Basically there was little function in my
optic nerve, which conducts signals from the eye to the visual cortex in
the brain. The bad news was that I am legally blind. The good news was that
this specific cause of my low vision should not get worse. The low-vision
specialist remarked that we must be happy to have a diagnosis finally. He
then uttered what may have been the most unfortunate words. He wished us
luck and directed us to the check-out window.
      After all the years of uncertainty and unpleasant tests, we were left
with nothing more than a diagnosis and a final farewell. For the next few
years I struggled to get through school as the amount of reading increased
and textbook fonts decreased, aided by nothing more than drugstore-
purchased magnifiers. My grades were very poor, in significant contrast to
those of my two older brothers, who excelled in their studies and
extracurricular activities. For my part, not much was expected. I was just
different.
      As so often happens in life, coincidence and plain luck finally
brought me some hope when I was approaching the latter part of my junior
year in high school. For reasons I cannot recall, I was in the school
library, which I seldom visited since reading was not my favorite task. It
just happened that the regular school librarian was sick that day, and the
substitute librarian was a former employee of the Michigan Commission for
the Blind. When she saw me struggling to read, she approached me and asked
what the problem was and whether she could help. I could explain very
little since little had ever been explained to me about my condition.
      This kind woman requested a meeting with my parents. She asked several
questions regarding my condition and what assistance I was receiving, which
was none. This was before the Internet and Google made researching medical
conditions and available resources much easier. She was concerned and upset
that we were not notified about the services and organizations available
for the visually impaired and their caregivers. She made certain that for
my final year of high school I would receive large-print books and become a
client of the Michigan Commission for the Blind. Although there was some
delay in my receiving the large-print books at the beginning of my senior
year, I was admittedly excited about my ability to read assignments quickly
and more accurately than I had been able to do with the drugstore
magnifiers. This improvement was reflected in my grades as well.
      My grade point average before large-print books hovered around 2.0. My
grades quickly rose to over 3.7 my final year. I also recall taking a
national standardized chemistry test during my senior year, which was
offered in large print. I scored in over the 90th percentile, and I did not
even enjoy chemistry. Being impressed by my academic achievement once I had
been provided with some accommodations for my vision, the University of
Michigan in Ann Arbor accepted me into its undergraduate program.
      My grades improved significantly once large-print text books were
provided. However, I might have leveraged other skills and accommodations
if only they had been offered. A closed-circuit television, audio books,
reader services, cane travel training, and screen-magnification devices
could have helped me. Rehabilitative services would have introduced me to
these items and many other skills useful for the blind and visually
impaired much earlier in life.
      I sometimes wonder what would have happened if I had not entered the
library that day in high school and had a chance encounter with a former
Michigan Commission for the Blind employee. I predict I would not have
earned a bachelor's degree from the University of Michigan and then go on
to receive both a law degree and an MBA from Michigan State University. In
fact, I have no idea what would have happened to me at all.
      One thing is certain: too often a significant gap in our health care
system occurred for ensuring that individuals diagnosed with legal
blindness or visual impairments are properly and expeditiously directed to
rehabilitation services. Patients would be better served and their
difficulties might be mitigated if rehabilitation occurs soon after
diagnosis. Vision specialists are on the front line in suggesting
opportunities to address the functional and psycho-social ramifications of
living with low or no vision. Steps must be taken to ensure that all those
newly diagnosed with visual impairments are headed in the right direction
for available resources. Personal experience and conversations with other
legally blind friends and colleagues suggest that little if any direction
is being given to patients.
      Theories offered for this lack of direction include: It is not the
role of low-vision specialists to prescribe rehabilitation services. Their
duty consists of making the diagnosis of the vision impairment, and no
more. Another possibility is that doctors feel personal and professional
failure when they cannot correct vision deficiencies. It is as if what they
cannot cure, they will ignore. Other explanations for why low-vision
specialists are not ensuring a seamless transition from diagnosis to
rehabilitation may exist. However, understanding the motives of the vision
specialists is of less importance than trying to change this tendency.
      To influence change in the profession, low-vision specialists should
consider this statistic: in 2011 the unemployment rate among the visually
disabled was as high as 73 percent, depending on the location within the
United States. These people were twice as likely to be below the poverty
line.[1] Half of people with a visual impairment suffer from alcohol abuse,
and 35 percent experience drug abuse.[2] More than a third of blind and
visually impaired people may suffer from depression[3] and face an elevated
risk for suicide.[4]
      If made aware of these secondary diagnoses, the professionals
diagnosing the onset of low vision or blindness would likely try to do more
for their patients. If not, an argument could be made that these doctors
are violating the spirit of the Hippocratic Oath, vowing to do no harm.
Unfortunately it appears the practice of leaving their patients without
advice on rehabilitation opportunities continues. In a recent visit to my
low-vision specialist in January of 2013, I inquired about this issue. It
was her opinion that, once she makes the determination of legal blindness,
it is the responsibility of school districts to provide the necessary
accommodations.
      Problems exist with this position, however. She did not elaborate on
the accommodations that she might recommend or agencies that might help
ensure that necessary accommodations are actually provided in a timely
manner. And, if the patient is not of school age, she might not make any
suggestions for rehabilitation at all. Even more important, providing
accommodations for performing well in school does not address the many
psycho-social and emotional aspects of living as a blind or visually
impaired person, particularly at the time of the first diagnosis.
      It is time for a change. Advocates for the blind and visually impaired
must call upon low-vision specialists to direct their patients to crucial
rehabilitation services. This could help patients face the new challenges
of living with low or no vision and live a more fulfilling, independent,
and productive life. Bringing awareness to the professional organizations
or associations these doctors belong to is a start. Approaching state
legislatures may be another avenue to follow, leading to implementation of
public policy requiring counseling about rehabilitation options once a
diagnosis is made.
      A consultation as short as ten minutes and the provision of pamphlets
to the patient or parents of the patient may go a long way toward improving
the outlook for the patient. The key to such consultations is emphasizing
the importance of rehabilitation and the negative impact vision loss may
have on an individual if proper post-diagnosis measures are not taken. The
financial expense of providing such direction is minuscule, but the
devastating costs to the patient lacking necessary services after diagnosis
may be immense. So what can we do to effectuate this change? It is an issue
too important to be ignored any longer.