Letters to the Editor - Viewpoints and Opinions
By Barbara Bavido

Viewpoints and Opinions  is to encourage the free exchange of ideas and knowledge and support within the community. As such, we have gathered some replies to the last edition and will always post those first.

As humans, we are inherently controversial;our background, experiences, and educational experiences are as diverse as the color of our hair. Let's learn from one another.

If you have a comment regarding a particular piece found within our Newsletter, simply click on the editor link at the bottom of the page.
**Please note--the editorial staff reserves the right to choose pieces as fitting per publication, and timing** All views posted do not necessarily reflect the view of the SayWhatClub, but rather that of the author. All opinions expressed herein are explicitly those of the individual author. The opinions do not substitute advice from your medical doctor.

Responses to the Viewpoints and Opinions can be sent to newsletter@saywhatclub.com and they'll be put on a page within two weeks.

From the Editor

It is well understood there is, was, and always will be this ongoing controversy about the different opinions surrounding the Deaf culture, late-deafened, to implant or not, oral mainstream VS. ASL, to use modern medicine or organic alternatives etc. We as individuals are each gifted with the chance to make those decisions for ourselves.  It is here, that we can share those differing opinions, experience and education.  What a gift we can be to one another in openly sharing those differences.

Barbara Bavido
SWC Editor

Editorial comments can be submitted to:
Barb Bavido
Barb's comment: Last Issue We had the topic of cochlear implants and immunization shared by Karen Sadler. To read her viewpoint, click here http://www.saywhatclub.com/newsletter/dec03/letters.html
Dr. Patrick Antonelli, Professor and surgeon at the University of Florida, Gainesville, Shands Hospital, and a "Who's Who" surgeon offers the following rebuttal concerning implantation as it was previously presented.
"Cochlear implants (CIs) have revolutionized the rehabilitation of both adults and children with profound hearing loss.  CIs have led to tremendous advances in the quality of life, educational, vocational, and social opportunities for their recipients.  As with any surgical procedure, implants carry the potential for complications, both intra- and post-operatively.  The rate of serious complications (i.e., those requiring hospitalization or leading to any permanent consequences), are very unusual.

In recent years, a great deal of attention has focused on the increased risk of meningitis in cochlear implant recipients.  Meningitis is a potentially life-threatening infection of the lining around the brain.  Meningitis itself is a common cause of deafness leading to CI placement.
The risk of meningitis is higher in ears with birth defects that include an abnormally patent communication with the spinal fluid and in ears that have any foreign material (eg, a CI or stapes prosthesis).  The risk of meningitis with CI is estimated to be around 1 in 2000.  No studies have been done to compare the rate of infection in ears with birth defects, with and without a CI. Many surgeons have never had a CI recipient develop meningitis.

Any CI recipient that develops an ear infection should be followed closely and treated relatively aggressively to minimize the risk for spread of the infection into the central nervous system. CI vendors and surgeons generally recommend the use of a pneumococcal vaccine in all implant recipients, because Streptococcus pneumoniae is a common cause of both ear infections and meningitis.
The pneumococcal vaccine's impact on post CI meningitis has yet to be determined.  Haemophilus influenza rarely causes ear infections, so it's not likely to be of significant value in preventing post-CI meningitis.  Respiratory tract viruses predispose to ear infections in young children.  Viral vaccines (eg, the flu shot) may reduce the risk of ear infections in CI recipients, particularly children, but its value has not been proven." 
Patrick J Antonelli, M.D.
ENT-Head & Neck Physician & Surgeon
Professor, pediatric & Adult Otolaryngology
Department of Otolaryngology
PO Box 100264
Gainesville, FL 32610-0264

Who Can Help Us Help Ourselves?

Barb's comment:  Recent government decisions affect all Americans particularly those in need--the following is one example of how vast sweeping rules affect the quality of life for those needing help.  What, is the answer? Does our writing and calling fall upon “deaf ears?” A fellow SWC member sent this heart-wrenching letter to public officials with little reply.  Who is capable of making such decisions for us, as citizens of this great nation?
Dear Governor Bush, 

I am a 47-year old blind, deaf, single citizen who desperately needs your help. I am unable to work and must subsist on an annual S.S.I., allotment of $6,600. This was effectively reduced approximately $1,500 last July 1st, when Florida Medicaid eliminated the adult hearing services program, at the same time limiting the adult visual services program. Medicaid advised me of this, in a letter dated July 22nd, and received by me on August 29th. This leaves me about $5,000 for annual subsistence. I am only able to survive because of the generosity of my friend, Arthur Nolden, who allows me to share his quarters. Mr. Nolden is also blind. The letter advised me that Medicaid would continue to reimburse for hearing services and visual services for recipients younger than age 21. This was obviously an arbitrary decision based on cutting or eliminating a vital service to save money. My needs are as basic as ever and you have essentially cut my meager income by about 25%.

Not very fair, in my opinion, I feel like a charity case and desperately want to contribute to society as a productive member.

  In an effort to become a productive member of society, I attended school and received an Associate of Arts degree in Basic Studies. I also received an Associate of Science degree in Medical & Secretarial Technology. While attending a refresher course I experienced a sudden and dramatic sensation in my ear and completely lost my hearing.  Because of this I was compelled to drop out of school and I couldn’t work in my fields of study because I was stone deaf.
I am unable to work because of my hearing impairment and with the development of cochlear implant technology; the means to make my hearing functional is available. It’s available, but not to me.  I had a cochlear implant in 2002, and while it enabled me to hear, it doesn’t allow me to function independently. In order for me to hear functionally, I need an implant for the other ear. On March 13th, 2003 I was advised by St. Augustine Medicaid office, that according to Medicaid guidelines, the requested service is not a covered benefit as it considered to be a personal comfort item. This statement is insulting and completely unfeeling .By what stretch of the imagination is a device that would give functional hearing to a blind person a personal comfort item? This is bureaucratic insanity.
I was forced to give up my pursuit of a working career and I had given up all hope of working. Since the second implant has been denied I have been devastated. I was really looking forward to hearing somewhat normally and being able to function independently, both financially and physically. This world has been denied me by what I consider to be an uncaring and insensitive society.
Governor Bush, the politicians have been urging able-bodied people to get off welfare and become productive citizens. Here I am a blind and deaf citizen who has overcome seemingly insurmountable barriers in an effort to do this, and you have denied me this opportunity, all in the name of economy. I believe you’ll agree with me that there’s something wrong with the system.
Can you help me help myself?
Linda C. Knight
Barb’s comment: Linda, I hope somehow, someway you do not give up hope, and that our united voices can foster change for all.
Television Captioning: 

Many posts have flown through our lists regarding captioning and the reduction/restriction of it.  The following link has been provided for those wishing to voice their concerns.



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