[il-talk] FW: [Albinism-talk] Kid with albinism to learn braille!

Tue May 8 00:19:50 UTC 2012

Connie 

From: albinism-talk-bounces at nfbnet.org [mailto:albinism-talk-bounces at nfbnet.org] On Behalf Of Heather Kirkwood
Sent: Monday, May 07, 2012 12:44 PM
To: albinism-talk at nfbnet.org
Subject: [Albinism-talk] Kid with albinism to learn braille!

This press release went out from the NFB, and when I saw it, I couldn't help but say, good for them! I know this list can be quiet sometimes, but since this actually concerned albinism, thought I'd bring it up. (I'll post the release below.) I'm one of those people with albinism I feel could have greatly benefited from learning braille as a kid. 

I went to the summer program at the Louisiana Center for the Blind in 1991 and was introduced to braille for the first time at 18. I picked it up quite quickly and by the end of the session had learned all of grade 1 and 2 and was reading about 70 words a minute. 

If I could do anything in my life over, I would have stayed for the longer program and really cemented those braille skills. But, I was young and stupid and was going to loose a college scholarship if I didn't appear in the fall for school. It never even occurred to me to argue with the college and try to appeal that. 

I did very well practicing my braille for a semester, but by the second semester, I had become very ill. I didn't know I had the HPS type of albinism then. Even though I found braille great for eye fatigue issues, I was still reading print faster than braille. As I got sicker, I just didn't have as much time to invest in my braille skills. I was quite sick for several years and lost much of the ground I had gained learning braille and have never really been able to get it back. Every time I start to make progress, I get sick again and it gets in the way. 

Vision in albinism varies a lot. I can understand why a lot of people with albinism don't appreciate how braille could be beneficial - and in some cases it probably wouldn't be. But, in my case it would have been. 

You always want more for the next generation than you had for yourself, so this story put a smile on my face! 

FOR IMMEDIATE RELEASE

CONTACT:
Chris Danielsen
Director of Public Relations
National Federation of the Blind
(410) 659-9314, extension 2330
(410) 262-1281 (Cell)
 <http://us.mc1612.mail.yahoo.com/mc/compose?to=cdanielsen@nfb.org> cdanielsen at nfb.org

National Federation of the Blind Applauds 
New Jersey Ruling on Braille Instruction for Blind Child

After Three-Year Battle , Hank Miller Will Receive Braille Instruction

Oceanport, New Jersey (May 7, 2012): After a three-year administrative and legal battle against their local school board, the Oceanport Board of Education, Jeffrey and Holly Miller obtained a ruling (docket number:2011 17218) from an administrative law judge that their eleven-year-old son Henry “Hank” Miller was improperly denied instruction in Braille, the reading and writing code for the blind.  The legal victory, obtained with the assistance of the  <http://www.nfb.org/> National Federation of the Blind (NFB), comes on the heels of  <http://blogs.edweek.org/edweek/speced/Letter%20to%20Secretary%20Duncan%20re%20Braille%20Literacy.pdf> a letter from 26 U.S. Senatorsurging the Department of Education to take steps to ensure that blind children who need Braille instruction receive it.

Holly and Jeffrey Miller brought the legal case on behalf of their son, Hank, whom they adopted from China and who is blind due to albinism and nystagmus.  Hank has limited vision that allows him to read enlarged print for short periods of time, but he is unable to read for sustained periods of time.  Although Hank’s parents continued to tell school officials that their son was experiencing visual fatigue and was having difficulty reading, the school board and its consultant, the New Jersey Commission for the Blind and Visually Impaired (CBVI), insisted that Hank was a proficient print reader, notwithstanding his continued placement in a special resource room for language arts.  In a nearly ten-day hearing, held under the due process provisions of the Individuals with Disabilities Education Improvement Act of 2004, Mrs. Miller testified that she watched Hank routinely struggle with his homework, suffering from eye strain and fatigue, but was unable to convince school officials or the CBVI that Hank needed Braille instruction.  She also testified that Hank’s schoolwork was not of the same quantity and quality as that of his classmates.  Although experts from the school and the commission claimed that Hank was a “visual learner” and should participate in the “sighted world,” experts hired by the Millers and the NFB concluded after thorough assessment that Hank could not read print for extended periods of time without eye strain, neck and back pain, fatigue, and loss of reading speed and comprehension.

In her order, Administrative Law Judge Lisa James-Beavers found that the school board and the commission displayed a clear “bias against Braille.”  She found that the school board and the commission had failed to assess Hank’s “sustained reading ability” with print, relying instead on reading assessments involving only brief passages, and citing Hank’s alleged failure to complain about struggling to read print.  The judge was unconvinced by the board and CBVI’s contention that Hank could rely on audio technology as reading demands increased through his school years, noting that “as pointed out by all of petitioners’ well-qualified experts, listening does not equate to reading.  One does not enhance the active skill of comprehending text by passively listening, even if one is following along with the reading.”  The order noted that “the CBVI failed to do what Oceanport relied on them to do, which is to help construct a program that would give H.M. meaningful educational benefit considering H.M.’s future needs.” Judge James-Beavers ordered that Hank Miller be provided with Braille instruction for forty-five minutes, five days a week, and that the school board provide compensatory instruction because of the three years that Hank was not provided with Braille instruction, in the form of intensive Braille summer programs or tutoring.

Dr. Marc Maurer, President of the National Federation of the Blind, said: “Based on the experience of countless parents of blind children and blind adults who had never learned Braille and have contacted us over the years, the National Federation of the Blind has consistently argued that blind children are being improperly assessed and denied Braille instruction when it is clearly appropriate.  Now after a thorough and comprehensive examination of the evidence in Hank Miller’s case, an independent judge has confirmed what we always knew. We hope that school and agency officials across the nation take note of this landmark ruling and commit to giving blind children access to Braille, the true key to literacy for the vast majority of children who are blind or losing vision.  The National Federation of the Blind will continue to stand with families like the Millers who find themselves pitted against the educational establishment in obtaining the equal education to which their children are entitled and which they deserve.”

Holly Miller, Hank’s mother, said: “I am obviously thrilled with this ruling, although I am still saddened that it took such a prolonged battle to achieve it.  I am stepping forward to tell Hank’s story in hopes that other parents of blind children will not have to struggle as we did.  I thank the National Federation of the Blind and all of the individuals and experts who came forward to assist in this case.  I plan to strongly and publicly advocate with the National Federation of the Blind for Braille instruction for blind children.”

The plaintiffs are represented in this matter by Sharon Krevor-Weisbaum of the Baltimore firm Brown, Goldstein, and Levy, and Jayne M. Wesler of the Cranbury firm Sussan and Greenwald.

For more information about the National Federation of the Blind, please visit  <http://www.nfb.org/> www.nfb.org.  For more information about Braille, the reading and writing code for the blind, please visit  <http://www.braille.org/> www.braille.org.

###

About the National Federation of the Blind

With more than 50,000 members, the National Federation of the Blind is the largest and most influential membership organization of blind people in the United States . The NFB improves blind people’s lives through advocacy, education, research, technology, and programs encouraging independence and self-confidence. It is the leading force in the blindness field today and the voice of the nation's blind. In January 2004 the NFB opened the National Federation of the Blind Jernigan Institute, the first research and training center in the United States for the blind led by the blind.

Heather Kirkwood
Director of Outreach, Vice President
Hermansky-Pudlak Syndrome Network
One South Road
Oyster Bay, NY 11771
1 (800) 789-9HPS
www.hpsnetwork.org <http://www.hpsnetwork.org/> 

Personal blog: www.heatherkirkwood.blogspot.com <http://www.heatherkirkwood.blogspot.com/> 

Search the Web at www.goodsearch.com <http://www.goodsearch.com/>  and choose the HPS Network as your charity! 

HPS/CHS New York Conference - March 8 - 10, 2013

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