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

Marcus Simmons president at map-n.org
Thu Jun 27 14:51:49 UTC 2013


I wonder why a person whom works for the high paying MCB would find a job as 
a college librarian.
----- Original Message ----- 
From: "Larry Posont" <president.nfb.mi at gmail.com>
To: <nfbmi-talk at nfbnet.org>
Sent: Thursday, June 27, 2013 10:26 AM
Subject: [nfbmi-talk] Low-Vision Specialists: An Impediment to 
MeetingPatients' needs


> 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
>
> Vehicle Donations Take the Blind Further Donate your car to the
> National Federation of the Blind today!
> For more information, please visit:
> www.carshelpingtheblind.org
> or call 1-855-659-9314
>         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.
>
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