Published Quarterly By
An Affiliate of the American Council of the Blind
KABVI strives to increase the independence, opportunity, and quality of life for all blind and visually impaired Kansans, and to assist us in taking our rightful place as equals among our sighted peers.
Volume 54 Spring, 2011 No. 1
KANSAS ASSOCIATION for the BLIND and VISUALLY IMPAIRED
Corporate Office, 603 SW Topeka Blvd. Suite 304 B
Topeka, Kansas 66603
Telephone: 785-235-8990 or,
in Kansas only, 1-800-799-1499
Web site: www.kabvi.com
Editor: Associate Editor:
Nancy Johnson Ann Byington
714 SW Wayne Ave. 909 SW College
Topeka, KS 66606 Topeka, KS 66606
(785) 234-8449 (785) 233-3839
Chairman of the Board and President
909 SW College Avenue
Topeka KS 66606
SEND ADDRESS CHANGES TO:
Membership Secretary, KABVI
Table of Contents
What’s Happening? By Ann Byington, President,
Let’s Talk About Independent Living, By Nancy Johnson, Editor,
Saying Thank you as KABVI Moves into a New Era, By Michael Byington
Report from the Board of Directors, By Nancy Johnson, Recording Secretary
Implanted Chip Allows Blind People to Detect Objects, By Mell Bowdler, Science Reporter, BBC News
Why Eaglets to Eagles? – By Nancy Johnson, Youth Activities Chair
Blindness and Non-24-hour Sleep Wake Disorder, from the Fact Sheet
Tantalizing Tidbits, Compiled by Nancy Johnson
Chapter Chatter, Compiled By Nancy Johnson
2011 Board of Directors
2011 Membership Application
2011 Scholarship Application
By Ann Byington, President
As most of you know, January through April gets rather hectic for advocacy organizations like KABVI, with legislation to oversee and testify on, membership information to send out, tabulate and report to the ACB National Office, the ACB legislative seminar and Presidents meeting, scholarship applications to mail, and the day-to-day activity of the Topeka office. We got a short reprieve this week—even the legislature had to take two snow days.
Our new office manager is Colleen Talley. Many of you already know Colleen as she is a former employee of the Kansas Rehab Center for the Blind and Visually Impaired. She feels a bit overwhelmed by trying to take on Michael’s activities, but she has already made my life easier and my KABVI work more successful. Welcome aboard, Colleen!
I forgot to note that this is also budget development/approval time. KABVI is managing through the good work of our Treasurer, Bob Chaffin, and the generosity of Envision and American Eagle Outfitters and Linda Bricker’s daughter (Anna Bricker) to remain in the black. A heart-felt “THANK-YOU” to all!
The Kansas Advisory Committee for the Blind and Visually Impaired held its third meeting in January. Mike Smith, Kansas Attorney General’s office explained how the “Kansas Open Meetings Act (KOMA)” is interpreted, particularly as it relates to email and conference calls. Mr. Smith summarized the law as “the over-arching purpose is to allow anybody to observe a body making decisions that will impact their life.”Additionally, the law applies to policy-making and/or groups which make recommendations, but does not cover staff meetings or individual governmental officials.” KABVI is not covered by this law as it applies only to governmental entities, but the braille copy of the “Citizen’s Guide to KOMA” will be in our library.
Following Mr. Smith’s presentation, Mike Donnelly repeated the announcement of the new Secretary of Social and Rehabilitation Services, Robert (Rob) Siedlecki, who currently serves as the Chief of Staff of the Department of Health in Florida. Mr. Donnelly further quoted from an article discussing cuts in funds for services to people with disabilities, “If it isn’t federally mandated, expect cuts to be made.”
Dr. Kendall Krug, Hays, Education subcommittee Chair, is working closely with staff of Johns Hopkins to use Kansas as a demonstration site for applying their Assessment Inventory toll, a web-based, goal development project for blind and visually impaired persons. Dr. Krug and Johns Hopkins are going to utilize the questionnaire to determine the goals/needs of the visually impaired population in Kansas, provide that information to contractors, and eventually determine how those contractors are meeting these needs.
The education subcommittee is also developing a training program for SRS staff. When and how it is implemented will depend on the final funds budgeted for travel, etc.
Dates for upcoming KACBVI meetings are April 14, July 14, and October 13.
The Kansas State School for the Blind (KSSB) Site Council met in November. Though she has been assigned by the legislature to divide her administrative time between KSSB and the Kansas School for the Deaf, Superintendent Burkindine is excited about the positive actions being accomplished by her staff at both facilities. As we heard at the convention, KSSB students excelled in the Annual Yearly Progress (AYP) by meeting or exceeding math scores in Kansas Standards from 50% to 80%. Fortunately, some KSSB students are working with the abacus as well as gaining a proficiency in Nemeth code. The resultant progress has sparked the creation of a national math instructional group of which KSSB staff are a part. Through the creative work of their math instructors, KSSB has received an award in “Financial Literacy.”
Reading scores improved from 94% to 96% with fourteen out of twenty KSSB students raising their reading levels by two or more grade levels. Last July, KSSB sent three students to the national “Braille Challenge” at the Braille Institute in Los Angeles with one student, Briana Brewer, winning in reading comprehension and the others doing quite well. Students, parents and faculty are all involved in fundraising activities to cover expenses for travel and attendance at this competition. To date, thirteen students from around Kansas have inquired about attending the regional challenge in Nebraska City in February.
KSSB staff has been working with the Center for Education Testing and Evaluation at K.U. and the Kansas State Department of Special Education to make the State Assessment testing more accessible in braille and large-print. This year’s large-print and braille tests will be identical; next year, a low vision test produced in regular-size print will allow students who use CCTV’s or magnifiers to do the tests using their preferred visual aids. Tests for both deaf and blind students were screened for question bias—i.e., not asking a deaf student what certain things sound like.
Students from other school districts taking technology short courses have learned to use bookshare.org to download books and have been working with the white board, a new piece of technology which allows for immense magnification of shapes, text, numbers and other data from the Internet. The white boards are becoming quite popular in public schools and even at the university level, and are often used to capture instructor notes and email them or print them for students.
KSSB students are also learning to use the Trekker Breeze, a talking GPS system which has recently been updated to offer the student the option of inputting information, making the Breeze much more interactive and useful. Students are also using a newly-developed healthy lifestyle program emphasizing nutrition, body image, and consumer involvement in health-related activities.
Instructional staffs from both KSSB and the School for the Deaf are doing cross-training in-services.
Plans for the Midwest Leadership Conference, to be held August 20-21 in St. Peters, Mo, at the Garden Plaza continue to be developed. Here Is the lineup of speakers and the topics:
1. Fund Raising – Ron Milliman
2. Mentoring – Brenda and Dan Dillon
3. Press Release Writing – Ron Milliman
4. How to conduct a meeting – Brenda and Dan Dillon
5. Banquet – ACB History – Chris Gray
KABVI has already committed some funding to this venture; we will be contacting scholarship winners to determine their interest. Anyone can apply to be a delegate, though, so if you are interested in improving your leadership abilities and learning more about the American Council of the Blind, contact me at the KABVI office.
Let’s Talk About Independent Living
By Nancy Johnson, Editor
With Independent Living Centers and Envision assuming provision of many of the services to blind and visually impaired persons recently shifted by the state to the Centers for Independent Living (CILs) and Envision, let’s think about what “independent living” is. Independent living is participating in day-to-day life, living where you choose and making decisions you believe will lead to your desired quality of life. Living independently is living as everyone else does - with opportunities to make decisions that affect your life, the freedom to pursue activities of your choice, limited no more than your non-disabled neighbors are. It is having the right and the opportunity to pursue a course of action. It is having the freedom to fail and to learn from your failures just as persons without disabilities do.
Independent living means being as self-sufficient as you can be, getting help if you really need it, and doing what you can for others when the opportunity presents. Reaching this point requires effort. I was “scared spitless” the first time I went somewhere by myself on a city bus and had to find a location on my own – even after orientation and mobility training. I don’t like going to new cities by myself, but I traveled independently to Washington D.C., New York, and Dallas. I live alone and cook, do laundry, and keep house. Choosing to develop adaptive techniques and skills makes this possible. Numerous people with severely impaired vision and blindness live independently with minimal support.
Services that were once relatively easy to obtain are no longer available. Low vision aids are wonderful if they help you, and they are expensive to purchase. Money is no longer there to do all the things that were once done for people. Training is still “out there” though for individuals with blindness and severe vision impairment to learn to do for themselves, and all you need do is request it. It is not the same as it once was when we had rehabilitation teachers across the state. A shift is taking place, and we need to nudge things the direction we want them to go.
The Americans with Disabilities Act (ADA) of 1990 does not distinguish between type, severity, or duration of disabilities. Disability means a physical or mental impairment that substantially limits one or more of an individual’s major life activities; a record of such impairment; or being regarded as having such an impairment. The ADA definition captures the largest and broadest estimate of people with disabilities. It describes a disability as a condition which limits a person’s ability to function in major life activities - including communication, walking, and self-care (such as feeding and dressing oneself) - and which is likely to continue indefinitely, resulting in the need for supportive services. Disabilities may be easily seen or “hidden” (such as epilepsy, arthritis, and diabetes), and may result from a variety of causes. According to the ADA, visual impairment affects a person’s ability to see, and includes: inability to see images clearly and distinctly; loss of visual field; inability to detect small changes in brightness; color blindness; and sensitivity to light. Among people with disabilities blindness and severe vision impairment are low incidence. Hundreds of types of disabilities exist. If we do not wish to get lost among them (as I think we fear we may) we must continue to work to keep what we have gained even as we are assimilated into the disability community.
Federal law mandates CILs to provide information/referrals, peer support, independent living skills training, and advocacy. All people with disabilities need these basic services. Additionally, they need the specialized training to live with their specific disabilities. The only one of the four core activities in which KABVI is NOT highly engaged is independent living skills training. The organization has members with this expertise, but it is not equipped to provide these services as needed. What I think KABVI must do is to work with the CILs to teach them that, BEFORE they provide support services, they introduce individuals with vision impairment to techniques to perform daily tasks for themselves. KABVI can then use its expertise and resources to supplement the work of the CILs and to educate the general population about the effects of vision impairment and the fact that this disability need not restrict independent living. KABVI’s advocacy, peer support, and public education work is still necessary as the paradigm shifts.
The Kansas Association for the Blind and Visually Impaired (KABVI) will award two $1,000 scholarships to visually impaired students who are enrolled in an academic, vocational, technical or professional postsecondary training program. The KABVI scholarship committee will accept applications from students who are residents of Kansas and are enrolled in a college, university or technical school.
Esther V. Taylor, for whom this scholarship is named, was a charter member of the Kansas Association for the Blind and Visually Impaired. She became a music teacher and taught at the Kansas State School for the Blind. Esther helped craft early special education laws in Kansas long before special education became a mandate of the Federal government. In her eighties, Esther wrote an autobiography, "The Professor's Family" about herself and her sister, Eleanor, exploring the challenges of growing up and becoming educated as blind women during the early 1900's. Esther particularly wanted blind students to be problem-solvers and as resourceful as their sighted peers in coping with the challenges of academics, employment and everyday life.
Information about eligibility requirements and supporting documentation is provided with an application form at the end of the newsletter. You can also contact the KABVI office with questions or concerns.
Saying Thank You as KABVI Moves into a New Era
By Michael Byington
For the past year and a half, I have been the principle volunteer “personing” the KABVI office during day time hours. I was working at the same time as a full time Graduate student in a distance learning program, but I was allowed to use the KABVI office equipment and space for my studies in exchange for administering the office, processing incoming mail, “personing” the phones, doing information and referral work, writing some grants, etc.
I was one of the most frequently available volunteers in the KABVI office during the day for about the six years prior to that as well, as I was working mostly second or third shift, so I had some time to help out at the office during the day. I am not there any longer.
My Graduate work has entered a phase where I must do an internship. I am thus living in Wichita for several months to take care of this requirement. Then I plan to return to northeast Kansas where it is planned that I will be working as a Certified Orientation and Mobility Specialist (COMS) as a part of Envision’s FOCUS program. Getting to be a COMS is what all of the Graduate study over the past year and a half has been about.
I want to thank all of the readers, members, and KABVI friends whom I have spoken with in my past capacities with KABVI. You have been grateful for any help I have been able to offer you, and you have always been cordial and given me good suggestions.
Colleen Talley has now replaced me at the KABVI office. We have hired Colleen on a part time basis because that is all we can afford to do at the moment, but she is a tremendously talented lady who has years of experience in the field of blindness. Please treat her with the same respect and kindness that you have shown me over the years. I am sure this will happen, but it does not hurt to make the suggestion anyway.
Colleen continues to be assisted by our Office Assistant/Driver, Brandon Bruton. Brandon continues to be available to us through a grant from Media Today. You will continue to hear his voice on the telephone sometimes as well when you call.
I am certainly not leaving KABVI. My role is just changing. I continue to serve as an Officer, and I am now the Legislative Chair.
We are working on some legislative issues. I will not detail them here because I think Nancy will be summarizing those in her article about the Board of Directors meeting. I requested and received some excellent guidance from the Board concerning our legislative agenda at our recent meeting.
The last point I want to make in this article is that KABVI remains a grass roots, consumer advocacy organization specializing in the areas of blindness and visual impairment, and in advocating for Kansas citizens who experience those conditions. We continue to receive no federal, State, or other government funding. What we are able to do depends on what money we can raise through private fundraising, grants, and philanthropic giving. We are not even beginning to pay Colleen what she is worth. To continue to employ her at all past 2011 we have to raise the money to do so. I will continue to help with some of the grant writing as well as the writing of legislative testimony. If any of you know of additional grant sources that we can tap, please let Colleen or me know. You can call the office at 800-799-1499 or at 785-235-8990, or write to us at the address on this magazine cover. If you know of folks looking for a not-for-profit to support which has very low administrative overhead, please do not hesitate to tell them about us.
Do not forget to visit us on the Internet at www.kabvi.com, or on Face book. You can e-mail colleen or me at email@example.com, or my personal e-mail is firstname.lastname@example.org.
Report from the Board of Directors
by Nancy Johnson, Recording Secretary
President Ann Byington convened the meeting of the Board of Directors of the Kansas Association for the Blind and Visually Impaired February 5, 2011 at the corporate office. Attending were eight directors, three attending by Skype. Ron Kaplanis, Terese Goren, and Donna Sanborn were absent. Office manager Colleen Talley and Kansas Youth Empowerment Academy (KYEA) representative Laridda Williams also attended.
Michael Byington will no longer serve as CEO because he has entered his internship to obtain his Certified Orientation and Mobility Specialist (COMS) credential. He thanked the board and membership for their support and indicated he continues to serve KABVI as an officer and chair of the legislative committee.
Mark Coates resigned his board position and moved out of the state. Ron Kaplanis has missed several meetings of the board of directors and was replaced. Henry Staub and Marilyn Lind were appointed to fill the positions vacated by Mark and Ron. Marilyn and Henry were both nominated for board positions at the convention but did not win election. They will serve until the 2011 convention when elections will again be held.
Ann Byington introduced Colleen Talley, KABVI’s newly hired part-time office manager. Colleen has extensive experience in the blindness field teaching at the Kansas Rehabilitation Center for the Blind. She is available 20 hours per week at the office.
A speaker was brought in from the Kansas Attorney General’s office to speak to the Kansas Advisory Committee for the Blind and Visually Impaired. A major responsibility of the committee is to consider means to meet the needs of individuals who are not involved in vocational rehabilitation. Dr. Kendall Krug reported on Kansas’ involvement in a study being conducted by Johns Hopkins University into the needs of these individuals.
The Midwest Leadership Conference of the American Council of the Blind (ACB) is scheduled August 19 and 20 in St. Peters, Missouri. Topics include fund raising, mentoring, publicity, and more. How to choose delegates was discussed. Consensus was that a younger member is preferred.
Chapter Visits are being planned by Ann Byington to be completed before the 2011 convention. Please confirm your meeting dates with her so she can make plans to visit you. Send your meeting dates to Kabvi@att.net or email@example.com. Or you may phone the KABVI office at 1-800-799-1499 with your meeting dates.
Ann Byington plans to institute “office hours,” a time for a conference call open to all members who wish to participate. Watch for more information about this and be ready to contribute.
For $250 KABVI can participate in ACB’s new database program. KABVI keeps its own database, and directors believe there is no advantage to ACB’s program because of this and because of the cost.
Two legislative issues are of concern, voter access and closure of the Kansas Neurological Institute (KNI). The concern with regard to voter access is the proposed signature verification requirement because the signatures of some blind individuals vary from time to time and some individuals do not have an actual signature. Consensus was that the present language regarding signatures is sufficient. With regard to the closure of KNI, a major concern is for the care of residents once they are released. Most require skilled care to a degree that most community care givers are not trained to provide. These residents will therefore be at risk of illness. Testimony relative to these two issues was presented.
Scholarship applications are due by April 15, 2011. Two $1000 scholarships are planned. Bob Chaffin, Ann Byington, Phyllis Schmidt, and Katie Kincy comprise the scholarship committee. More information about scholarships appears elsewhere in this issue of KABVI NEWS.
KABVI has 542 individuals on the mailing list. Mikel McCary reported about 150 are paid members. Michael Byington reminded members that KABVI NEWS is sent to anyone interested without charge in accordance with IRS regulations. Membership is slightly increased in the past year.
KABVI NEWS continues to go out, but rarely is there any feedback. Michael Byington said he has had comments from individuals who have read articles in the newsletter and knows it reaches people. Nancy has had similar experiences and reminds members that they need not be writers to contribute to KABVI NEWS. She will “clean up” spelling and grammar in any material that is sent. Please remember to read “The Braille Forum,” the news magazine of the American Council of the Blind (ACB). KABVI does not intentionally replicate the information found there.
The Youth Activities committee expresses gratitude to Anna Bricker for her awesome work. She single-handedly raised $1,178 from a golf tournament she arranged. Anna donated the entire proceeds of her tournament to the youth activities funds. The committee continues to meet monthly. In January, they worked on developing a presentation of KABVI’s history in a manner that will make it more interesting to young people. Laridda Williams, KYEA’s representative, indicated she will be involved with providing the board’s youth activities training. She said she has been going through her files to discover potential contacts KABVI can use. She indicated that KYEA makes presentations throughout the state, and they will begin including information about KABVI in these presentations. The youth program is dual-track. While working on the youth program, Nancy is also developing a program for parents. The greatest challenge is contacting youth and their parents. We need help from all of KABVI’s members and friends to reach them.
The Eyes Wide Open golf tournament earned $1,357.96, less than the previous year, primarily because efforts to procure sponsors were not begun early enough. It is not too early to begin recruiting sponsors. Pictures from the 2010 tournament have been sent to all teams. Directors did not have the exact June date for the 2011 event, so contact the KABVI office by email or phone to get that information.
Carolyn (Perez) Thomason, Mikel McCary, and Colleen Talley will work together on technology.
Paul Berscheidt said the number of hits to the website has increased from 36 to 60 per day, so the site is obviously reaching people. Plans are to add a youth page and a parents’ page soon. KABVI has 24 friends on Face Book, most from outside Kansas. Paul invited members and friends to become friends and put information onto Face Book. It is one more way to let everyone know what we are doing.
Consensus was to return to Envision in Wichita for this year’s convention and begin looking for a site and planning for 2012 now. Directors want to move activities around the state to reach people in outlying areas.
Remaining 2011 board meeting dates are April 30, July 30, and (tentatively) October 29. The October meeting is the post-convention meeting and may change depending upon the convention date obtained.
Implanted chip allows blind
people to detect objects
By Neil Bowdler
Science reporter, BBC News
Miikka Terho is given the
task of reading letters which together misspell his own name.
A man with an inherited form of blindness has been able to identify letters and a clock face using a pioneering implant, researchers say.
Miikka Terho, 46, from Finland, was fitted with an experimental chip behind his retina. Success was also reported in other patients. The chip allows a patient to detect objects with their eyes, unlike a rival approach that uses an external camera. Details of the work are in the journal Proceedings of the Royal Society B. in Germany where the implant is placed
Professor Eberhart Zrenner,
of Germany's University of Tuebingen, and colleagues at private company Retina
Implant AG initially tested their sub-retinal chip
on 11 people. Some noticed no improvement as their condition was too advanced to benefit from the implant, but a majority was able to pick out bright objects, Prof Zrenner told the BBC. However, it was only when the chip was placed further behind the retina, in the central macular area in three people, that they achieved the best
results. Two of these had lost their vision because of the inherited condition retinitis pigmentosa, or RP, the other because of a related inherited condition called
RP leads to the progressive degeneration of cells in the eye's retina, resulting in night blindness, tunnel vision and then usually permanent blindness. The symptoms can begin from early childhood.
The best results were
achieved with Mr. Terho, who was able to recognize cutlery and a mug on a table,
a clock face and discern seven different shades of grey. He was also able to
move around a room independently and approach people. In further tests he read
large letters set out before him, including his name, which had been
deliberately misspelled. He soon noticed it had been
spelt in the same way as the Finnish racing driver Mika Hakkinnen.
"Three or four days after the implantation, when everything was healed, I was like wow, there's activity," he told the BBC from his home in Finland.
"Right after that, if my eye hit the light, then I was able to see flashes, some activity which I hadn't had.
"Then day after day when we started working with it, practicing, and then I started seeing better and better all the time.”
Soon Mr. Terho was able to read letters by training his mind to bring the component lines that comprised the letters together.
The prototype implant has now been removed, but he has been promised an upgraded version soon. He says it can make a difference to his life.
"What I realized in those days was that it was such a great feeling to focus on something," he says. "Even having a limited ability to see with the chip, it will be good for orientation, either walking somewhere or being able to see that something is before you even if you don't see all the tiny details of the object."
The chip works by converting light that enters the eye into electrical impulses which are fed into the optic nerve behind the eye. It is externally powered and in the initial study was connected to a cable which protruded from the skin behind the ear to connect with a battery. The team is now testing an upgrade in which the device is all contained beneath the skin, with power delivered through the skin via an external device that clips behind the ear.
This is by no means the only approach being taken by scientists to try to restore some visual ability to people with retinal dysfunction - what's called retinal dystrophy. A rival chip by US-based Second Sight that sits on top of the retina has already been implanted in patients, but that technique requires the patient to be fitted with a camera fixed to a pair of glasses.
Charities gave the news of the latest work a cautious welcome. David Head, of the British Retinitis Pigmentosa Society, said: "It's really fascinating work, but it doesn't restore vision. It rather gives people signals which help them to interpret."
Why Eaglets to Eagles?
By Nancy Johnson
“Above all other birds it is the soaring eagle, with its size and weight, that gives the most abiding impression of power and purpose in the air. It advances solidly like a great ship cleaving the swells and thrusting aside the smaller waves. It sails directly where lesser birds are rocked and tilted by the air currents”. (Edwin Way Teale, "Bird of Freedom," Atlantic Monthly, 1957, Retrieved from http://www.baldeagleinfo.com/eagle/eagle8.html
KABVI and the Kansas Youth Empowerment Academy (KYEA), with remaining funds from the American Eagle Outfitters Foundation and Anna Bricker’s generous donation, are working together to develop a program for visually impaired and blind youth and their parents across Kansas. KABVI’S mission is “to increase the independence, opportunity, and quality of life for all blind and visually impaired Kansans, and to assist us in taking our rightful place as equals among our sighted peers.” KYEA’s Mission is to “educate, mentor, and support youth with disabilities to be contributing members of their communities.” Severe vision impairment and blindness are sensory disabilities. Blind and visually impaired youth cannot take their places among their sighted peers without becoming contributing members of society to the best of their abilities.
Youth Activities Committee members realize a majority of blind and visually impaired children and youth deal with multiple disabilities. We believe all children and youth deserve the opportunity to reach their highest potential. We believe, for that to happen, parents must realize what that potential is. We want to empower parents to empower their children and youth to achieve as much as they can. We want our young people – our eaglets - to soar toward their goals with the power and purpose of an eagle. That’s the first reason for the program’s name.
The mascot for the Kansas State School for the Blind’s sports teams is the eagle. Numerous KABVI members are Kansas Eagles. The symbolism has been around for years.
Finally, the name was chosen in appreciation of the American Eagle Outfitter’s Foundation, which provided funding to get the program going.
KABVI’s website, www.kabvi.com, will soon have links to information for parents and youth, and watch KABVI NEWS as the program progresses.
Eaglets to Eagles Program
“So Youth May Soar to their Highest Potential”
Mar 1 Apr 5 May 3 Jun 7 Jul 5 Aug 2
Sep 6 Oct 4 Nov 1 Dec 6
Stay tuned! We’re working on it!
Mom and Dad, what would you like to see us do? Young people, what would YOU like to see us do?
The committee meets the first Tuesday of each month at 6:00 p.m. Location varies. To send suggestions or for information: firstname.lastname@example.org or Kabvi@att.net or phone (785) 235-8990 or toll free in Kansas 1-800-799-1499.
Blindness and Non-24-Hour Sleep Wake Disorder
From the fact sheet provided
Poor quality or quantity of sleep is a common complaint, especially in blind individuals with no light perception. Non-24-hour sleep wake disorder (N24HSWD) occurs in some individuals who are totally blind and lack the light sensitivity necessary to reset the “body clock”. As a result, these individuals suffer from cyclic insomnia and sleep deprivation, which may lead to difficulties with concentration and memory, as well as an increased risk of errors and accidents. For some totally blind individuals, the sleeplessness and daytime fatigue have significant impacts on their social and occupational lives and are considered the most disabling aspect of their blindness.
The timing of human sleep is governed by the length of time since a person last slept and by their internal body clock.
The internal body clock or circadian pacemaker controls the timing of human sleep with a rhythm that is regulated by a tiny region of the brain called the suprachiasmatic nucleus (SCN). Signals from the SCN help us stay awake and counteract the effects of fatigue. These signals peak in the evening, when the drive for sleep is high, and then diminish when bedtime approaches.
The intrinsic circadian body clock regulates biological functions in an approximate, 24-hour cycle. The cycle is usually longer than 24 hours and requires regular input from the environment to help maintain synchrony to the 24-hour day. In most people, circadian rhythms are precisely synchronized to the 24-hour day by exposure to environmental synchronizers such as light. Without light, an individual may “free run” slightly longer or shorter than 24-hours, causing a slight delay or advance in his/her body clock each day.
A misalignment between an individual’s body clock and their sleep/wake schedule may result in a Circadian Rhythm Sleep Disorder (CRSD). Examples of CRSDs include Shift Work Sleep Disorder, Delayed Sleep Phase Disorder, Jet Lag, and Non-24-Hour Sleep Wake Disorder.
Non-24-Hour Sleep-Wake Disorder is a chronic circadian rhythm sleep disorder that occurs when individuals are unable to synchronize their internal clock to the 24-hour light-dark cycle. As a result, the sleep-wake cycle of these individuals moves gradually later and later each day if their circadian period is more than 24 hours or earlier and earlier if it is less than 24 hours.
This condition occurs almost entirely in subjects who are totally blind and lack the light sensitivity necessary to reset the circadian clock. It is estimated that about 1.3 million Americans are legally blind, including, approximately 10% with no light perception. Clinical studies estimate that about 50% of totally blind individuals suffer from N24HSWD. Thus, approximately 65,000 Americans can be estimated to suffer from this disorder.
In addition to problems sleeping at the desired time, individuals with N24HSWD experience daytime sleepiness that often results in daytime napping. The severity of nighttime sleep complaints and/or daytime sleepiness complaints varies depending on where in the cycle the individual’s body clock is with respect to their social, work, or sleep schedule. The “free running” of the clock results in approximately a 1-4 month repeating cycle where the clock continually shifts a little each day (about 15 minutes on average) until the cycle repeats itself. Initially, when the circadian period moves out of synchrony with the 24 hour light-dark cycle, individuals with N24HSWD have difficulty initiating sleep. As time progresses, the internal circadian rhythm of these individuals moves further and further away from the 24 hour light-dark cycle, which gradually makes sleeping at night virtually impossible, and leads to extreme sleepiness during daytime hours. Eventually, the individual’s sleep-wake cycle moves back into alignment with the night, and “free-running” individuals are able to sleep well during a conventional or socially acceptable time. However, the alignment between the internal circadian rhythm and the 24-hour light dark cycle is only temporary. In addition to cyclical nighttime sleep and daytime sleepiness problems, this condition can cause daily shifts in body temperature and hormone secretion, and is sometimes associated with depressive symptoms and mood disorders.
A diagnosis of N24HSWD can be made with the help of sleep history information, captured in a sleep diary or questionnaire, and by the analysis of biological markers of the circadian rhythm present in the blood and the urine, usually collected over several days. Individuals should address any questions they have about treatment of N24HSWD with their healthcare provider. At this time, there is no treatment approved by the U.S. Food and Drug Administration for N24HSWD in blind individuals without light perception.
Several clinical studies have investigated the effect of natural and synthetic molecules to reset the internal clock in individuals with circadian rhythm sleep disorders, including N24HSWD. While some promising results have been obtained, more studies are needed to develop an effective and safe treatment.
Clinical trials are currently planned to investigate the efficacy and safety of a new experimental treatment in blind individuals with N24HSWD. If you are totally blind with no light perception, have problems sleeping at night or trouble with daytime sleepiness, you can help researchers by taking a brief phone survey (In addition, you will have the opportunity to be informed of upcoming clinical studies recruiting in your area.) See information in “Tantalizing Tidbits” or visit
Clinical Research Study Recruitment: Blind individuals with no light perception needed: A local doctor is conducting research to evaluate a new investigational treatment for insomnia and daytime sleepiness in individuals who are totally blind. Individuals may qualify who:
• are between 18 and 75 years of age
• are blind with no light perception
• have trouble sleeping at night or experience daytime sleepiness
Participants will be compensated for their time and effort and will receive study medication and study-related medical evaluation at no cost. A few things to note about this trial:
· The site will arrange and cover the cost for all transportation to and from the site for participants and guardians. Any other necessary travel arrangements (i.e., guide dogs, hotel) will be accommodated.
· There is compensation for participation in the trial.
· Please note that it is possible that some people may report having some light perception, but also have sleep issues (e.g. trouble falling asleep, trouble staying asleep, daytime sleepiness, etc.); we would encourage these people to call the 1-800 number on the announcement, as it is still possible that they could qualify for the trial.
For more information Call 1-888-389-7033 M-F 9:00 AM to 5:00 PM ET. Christina Fatemi, Outreach Specialist, Vanda Pharmaceuticals Inc. 9605 Medical Center Dr. Suite 300 Rockville, MD 20850. (240)599-4520. Christina.Fatemi@vandapharma.com
Is anyone who is blind or visually impaired experienced selling Avon? It would be particularly helpful to hear from anyone who is completely blind. I need to investigate making some extra money. Please contact me at: email@example.com
Scholarship: The American Foundation for the Blind (AFB) is now accepting applications for our 2011 scholarship program. Visit www.afb.org/scholarships.asp to fill out the online application form. The AFB homepage, www.afb.org, has a link to the form under the "headlines” section as well. Contact Tara Annis, Information Specialist, American Foundation for the Blind, 1000 Fifth Ave, Suite 350, Huntington, WV 25701. Phone: (304) 710-3035. E-mail: firstname.lastname@example.org. Visit our web site at: www.afb.org
Bing 411: Google shut down Google 411in November. The free directory assistance service had accurate speech recognition and even connected you to the requested number for free. Luckily, Microsoft debuted its own free directory assistance last year called Bing 411. It has even more features than Google 411 had. Besides directory assistance, Bing 411 provides news, weather, sports, stock quotes, traffic reports, movie times, and more. When using Bing 411 for directory assistance it will text you the requested phone number or connect you to the number for free. Give Bing 411 a try at 1-800-246-4411.
Cell Phone Course: The Carroll Center for the Blind has created a new online course called “Choosing an Accessible Cell Phone”. In this course you will learn what phones can be made accessible, what products are out there that can make a phone talk or listen, what makes a phone a “smart phone” and much more! And all for only $25.00! The phones currently covered in the course include:
* Verizon SMT 5800 with Mobile Speak
* AT&T Nokia N82 with Talks
* Blackberry Curve with Oratio
* Verizon Samsung Haven
* AT&T Apple iPhone 4.
Learn about the layout of each phone and have step-by-step instructions on how to use each phone’s major features including telephone access, web browsing, emailing, texting, contact management, calendaring and media access. You will also find audio demonstrations of all of these features. You can also view videos of an Accessible Cell Phone Seminar for FREE. Don’t wait for the next generation of phones! Educate yourself with The Carroll Center’s Choosing an Accessible Cell Phone.
Floppy disks and cassettes available: If you or someone you know needs clean floppy disks and C-90 and C-60 cassettes, About 100 clean cassettes need a new shelf on which to collect someone else's dust. About 100 or more used magazine tapes are also available for re-use. What nobody wants will be tossed away and my home office will never look the same. Bill Lewis, email@example.com or call (316) 681-7443.
HKNC’s CONNECT! Newsletter: The Helen Keller National Center (HKNC) is pleased to announce the September 2010 issue of CONNECT!, an online publication that keeps you informed about HKNC’s many activities. This issue contains articles about: Deaf-Blind Young Adults in Washington, D.C., SSP Training in the State of Maine, Emergency Preparedness for People who are Deaf-Blind, and more! You can read CONNECT! at
http://hknc.org/CONNECT!/2010%2009/CONNECT4.htm or go to www.hknc.org and click on the CONNECT! link.
There is no charge for CONNECT! It can be accessed online with alternate formats of PDF, text, large print and regular print. Braille copies are also available. To sign up for CONNECT! you can contact Beth A. Jordan, representative; Helen Keller National Center; Great Plains Regional Office; 4330 Shawnee Mission Pkwy, Suite 108; Shawnee Mission, KS 66205-2522. Phone 913-677-4562 voice/TTY; 913-677-1544 fax; 866-327-6621 videophone; Beth.Jordan@hknc.org; or www.HKNC.org.
Working Replica of Noah's Ark opened in SCHAGEN, Netherlands. Man Builds Noah's Ark to the exact scale given in the Bible.
The massive central door in
the side of Noah's Ark was opened and the first crowd of curious townsfolk
beheld the wonder. This replica of the biblical Ark was built by Dutch
Creationist Johan Huibers as a testament to his faith in the literal truth of
The ark is 150 cubits long, 30 cubits high and 20 cubits wide. That's two-thirds the length of a football field and as high as a three-story house. Life-sized models of giraffes, elephants, lions, crocodiles, zebras, bison and other animals greet visitors as they arrive in the main hold.
A contractor by trade, Huibers built the ark of cedar and pine. Biblical
scholars debate exactly what the wood used by Noah would have been. Huibers
did the work mostly with his own hands, using modern tools and with occasional
help from his son Roy. Construction began in May 2005. On the uncovered top
deck - not quite ready in time for the opening - will come a petting zoo,
with baby lambs and chickens, and goats, and one camel.
Visitors on the first day were stunned. “It's beyond comprehension,” said Mary Louise Starosciak, who happened to be bicycling by with her husband while on vacation when they saw the ark looming over the local landscape.
“I knew the story of Noah, but I had no idea the boat would have been so big!” There is enough space near the keel for a 50-seat film theater where kids can watch a video that tells the story of Noah and his ark.
HandleEasy 326i gsm by Doro:
It does not talk, but looks easy to use, with only 18 big, easy access buttons.
It is an easy to use mobile phone when you simply want to make and receive calls. Direct memory buttons and a large keypad and display make dialing easier, while a vibrating ringer alerts you of incoming calls. Soft touch surface provides better grip, and there is an easily activated speakerphone for added convenience.
Ergonomic. Here is a link to the pdf file with complete information. http://www.independentliving.com/instructions/812368-factsheet.pdf
Shopping at Meijer just got easier. The Grand Rapids, MI.-based retailer, with 12 local superstores, has launched a grocery delivery service available in all 50 states and internationally. Orders for any of 5,000 items can be made at www.meijerdoorstepgrocer.com. Tack on shipping fees of $7.95 and up, and items will typically hit doorsteps within two to four days. The site offers non-perishable national and Meijer brand items as well as baby supplies, pet food, cleaning supplies, laundry products and health and beauty items. About 3,000 items are individual-sized and the rest are multi-pack or bulk. The grocer will offer a 10 percent discount on orders of $100 or more for a limited time. Customers can enter the promo code "grocery" at checkout to get the discount.
Compiled by Nancy Johnson
Please be sure to send your meeting dates to President Ann Byington at Kabvi@att.net or Nancy Johnson, firstname.lastname@example.org or calling the KABVI office at 1-800-799-1499 or (785) 235-8990. Ann needs the dates so she can arrange trips to see all of you before the October annual meeting/convention.
Congratulations to Pat Hall, Eleanor Scott, and Marion Layher, new officers of the Northwest Kansas Association for the Visually Impaired (NKAVI). Members learned about depression and vision loss and about environmental changes and adaptations that can help with adjustment to vision loss. Fraud prevention was another presentation topic. They enjoyed some fun and entertainment at a Christmas party as well.
Southwest Kansas Association for the Visually Impaired (SKAVI) members had a holiday luncheon and fun with a skit about old fashioned aprons. They learned about how visually impaired students in their area are served by an itinerant teacher of the visually impaired.
The Central Kansas Association for the Visually Impaired (CKAVI) was assured that the low vision area will remain at the Great Bend Library after the reorganization of the Talking Books program. Congratulations to CKAVI’s new officers, John Stoskopf, Trella Berscheidt, and Ruth Claphan. CKAVI has already set July 17, 2011, as the date for a summer potluck event.
Western Kansas Low Vision Support will no longer meet because of “lack of interest.” Faithful participants were encouraged to become involved with the IKAN focus groups being held in January and February.
The Topeka Association for the Blind and Visually Impaired (TABVI) meets the second Saturday of each month. Program topics have included fire prevention, “Paranormal Adventures,” Starlight Theater performances and Peggy Sampson’s experiences teaching and providing audio description, a taped presentation of Narrator David Hartley Margolan reading from "Marley and Me," and a video highlighting momentous events in Kansas City's WDAF 's 60 years. Other events included attendance of the Topeka Civic Center Academy presentation of "The Country of the Blind" by Kansas author Frank Higgins and performed by elementary, middle and high school students. None of the actors were blind. The directors requested and received instruction from Nancy Johnson, Ann and Michael Byington, who were available afterwards to talk with people about KABVI and/or other blindness issues. Members enjoyed the annual covered dish meal, Thanksgiving dinner, and Christmas party. Members frequently attended and spoke at board meetings of the Topeka Metropolitan Transit Authority and have been present at City Council meetings to ensure preservation of evening and Sunday transportation services that were threatened with discontinuance because of the budget deficit. Nancy Johnson represents KABVI and the local visually impaired community as a member of Topeka Transit’s Advisory Committee on Accessible Transportation Services (ACATS).
Victor Eugene Smyth died Thursday, November 25, 2010, at the Atchison Senior Village. Victor was born December 20, 1926, in Dodge City, KS, the son of Lester H. and Pearl Leona (Walker) Smyth. He graduated from the Kansas State School for the Blind and had worked as a mattress packer for Kansas Industries for the Blind. Vic enjoyed listening to the radio, news, weather and reading western books. Vic married Goldie B. Shockey on May 8, 1971, in Wyandotte, KS. She survives at the home in Atchison. Additional survivors include his step-daughters, Louise (Ron) Popplewell, Howardwick, TX; Willa Fowler, Pattonsburg, MO; Diane (William) Craine, Waldron, MO; a brother, Lester Smyth, Jr., Ulysses, KS; 2 nephews, 14 grandchildren, and numerous great-grandchildren and great-great-grandchildren. Vic was preceded in death by step-sons, John and James Shockey and a step-daughter, Sandra Chronister.
Memorials are suggested to the American Cancer Society or the Kansas Association for the Blind and Visually Impaired and can be sent in care of the funeral home: Becker-Dyer-Stanton and O’Trimble Funeral Homes; 800 Kansas Avenue; Atchison, KS 66002. Online condolences may be left at www.beckerdyer.com.
2011 KABVI Board of Directors
send all correspondence e-mail, surface mail, or phone contacts, to: KABVI, 603
SW Topeka Blvd. Suite 304, Topeka, Kansas 66603. Telephone: 785-235-8990 or,
in Kansas only, 1-800-799-1499.
E-mail: email@example.com. Web site: www.kabvi.com.
Note: Shown after the Directors' names is the year their current terms expire.
* Appointed to serve until elections are held during the annual meeting.
1. Marilyn Lind, firstname.lastname@example.org *
2. Bill Moore 2011 email@example.com
3. Paul Berscheidt 2011 firstname.lastname@example.org
4. Terese Goren, 2011 email@example.com
5. Michael Byington, Corresponding Secretary, 2012 firstname.lastname@example.org
6. Robert (Bob) Chaffin, Treasurer, 2012 email@example.com
7. Henry Staub, 2012 firstname.lastname@example.org *
8. Mikel McCary, Membership Secretary, 2012 email@example.com or (work) firstname.lastname@example.org
9. Nancy Johnson, Recording Secretary and KABVINEWS Editor, 2013 email@example.com
10. Beulah Carrington, 2013 firstname.lastname@example.org
11. Ann Byington, President and KABVI NEWS Associate Editor, 2013 email@example.com
12. Donna Sanborn – 2013 firstname.lastname@example.org
2011 KABVI Membership Application
____ Enclosed is $10.00 for my 2010 KABVI dues.
____ Enclosed is $250 for my Life Membership.
CITY: _____________________ STATE: _________
ZIP: _________TELEPHONE: (___) _____-___________
E-MAIL ADDRESS: ______________________________
_____Legally blind _____Visually impaired
I would like the KABVI NEWS and THE BRAILLE FORUM in:
_____ Braille _____ Large print
_____ Cassette _____ Regular print ______ E-mail
_____ I do not want these publications.
I am including a tax deductible donation to KABVI
in the amount of $ ______.___.
SEND this form and your enclosed check to:
Robert Chaffin, Treasurer
1105 Centennial Blvd.
Hays, Kansas 67601.
KANSAS ASSOCIATION FOR THE BLIND AND VISUALLY IMPAIRED, Inc.
Esther V. Taylor Scholarship Application Form
NOTE: Please DO NOT MAKE copies of this application as committee members, who are blind or visually impaired themselves, will be reading Xeroxed copies of your application using CCTV’s and/or scanning software. To request additional copies of this material, call (800) 749-1499 or e-mail email@example.com.
To be eligible for a scholarship the applicant must:
(1) Be a visually impaired student admitted to a post-secondary training program for the 2011-12 school year
(2) Be a resident of Kansas
(3) Submit a completed, application form together with the required supporting documentation postmarked on or before April 15, 2011.
To be considered for a scholarship the student must submit the following items:
(I) A completed application form:
(2) An autobiographical sketch (please update if you have applied previously) of no more than two double-spaced, typewritten pages. This sketch should include goals, strengths, weaknesses, hobbies, honors, extracurricular activities, achievements, etc. This must be typed; hand-written material will not be accepted.
(3) A certified transcript from the school presently, or most recently attended.
(4) Two letters of recommendation from current or recent instructors
(5) Proof of acceptance from a post-secondary school. Entering or transferring students must submit a letter of acceptance from the admissions office.
(6) Certification of visual status on the form attached to this application.
Recipients of this scholarship will receive a one year free membership to KABVI.
I. PERSONAL DATA
A. Name, mailing address, and telephone number:
Phone number: ______________________
B. Are you a U.S. Citizen? Yes No __
II. EDUCATION INFORMATION:
A. Name and address of the school you are currently attending or have completed (Secondary and post-secondary schools)
1. Enrollment status: ____ Full time ____ Part time
2. Number of hours completed to date. __________
3. Major ____________ (GPA based on 4.0 scale)
4. Degree/certificate/diploma sought; BA, BS, MS,
5. Date you expect to receive it. ___________
B. Name and address of the school you plan to attend during the semester for which you are applying for this scholarship (if different from A. above):
1. Enrollment status: _____ Full time _____ Part
2. Number of hours you are planning to take per
3. Major ___________
4. Degree/certificate sought: BA, BS, MS, etc.
5. Date you expect to receive it: ___________
III. FINANCIAL INFORMATION:
Are you eligible for other financially based student aid?
IV. ESSENTIAL SUPPORTING DOCUMENTS:
A. Completed application.
B. Typed autobiographical sketch: include work experience, extracurricular activities, and/or volunteer service.
C. Certified transcript from the school you are attending or most recently attended.
D. Two letters of recommendation from current or recent instructors.
E. Proof of acceptance from a post-secondary school.
F. Certification of visual status on the attached form.
Certification of Visual Disability
(This form is to be completed by an ophthalmologist, optometrist, physician, vocational rehabilitation counselor, or independent living center counselor)
I certify that ____________________________ is known to me and is visually Impaired as specified by the following definition:
"Visual acuity best corrected with conventional spectacles or contact lenses of 20/60 or worse in the better eye, or a visual field restricted to 20 degrees or less in each eye." This also includes those certified as legally blind.
Date of examination: ______________________
This is a permanent condition: Yes _____ No _____
Certifier’s Name: ______________________________
Title/ Agency: _______________________________