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 53 spring, 2010 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
The purpose of KABVI NEWS, published by the Kansas Association for the
Blind and Visually Impaired, Inc. (KABVI), is to promote the general welfare of
the blind and visually impaired in Kansas. KABVI NEWS shall reflect the
philosophy and policies of the Association, report the activities of its
members, and include pertinent articles pertaining to blindness and low vision.
Publication Policy: Send us your news, views, articles, and features. Materials in braille, on tape, on computer disk (Microsoft Word, plain text, or ASCII), or typewritten (double spaced) will be considered. When quoting from other published materials, please include dates and sources. Unsigned material will not be considered for publication. If you send a stamped, self-addressed envelope, original materials will be returned. Articles for publication must reach the editor by January 22, April 22, July 22, and October 22 of each year. Editorial staff reserves the right to edit submitted materials.
Membership renewal letters are sent annually to persons who have not paid dues. If responses are not received within a reasonable time, names of those persons will be removed from KABVI’s mailing list and their subscription to KABVI NEWS discontinued. Membership is open to anyone who is interested but is not required for receipt of KABVI NEWS. A membership renewal form on which you can indicate your newsletter preferences can be found at the end of each issue. Thank you for your cooperation.
Table of Contents
Rehab Services Allows Kansas Blind and visually Impaired
to Participate in Stakeholder’s Meeting, By Ann
Notions, By Nancy Johnson, Recording Secretary
KABVI Steps Up to Help, By Michael Byington
Related Story: KABVI Meets with Governor’s Staff, By
2009 KABVI Scholarship Recipients, By Bob Chaffin
2010 Scholarships Available, By Bob Chaffin
KABVI Expands Assistive Technology Recycling, By Michael
KABVI Life Members, By Joanne Hackerott
Report from the Board of Directors, By Nancy Johnson,
New Voice at the KABVI Office, By Michael Byington
Why Light Hurts During Migraines, By Amanda Gardner,
Voices of Our Youth, Compiled By Nancy Johnson
Tantalizing Tidbits, Compiled by Nancy Johnson
Chapter Chatter, Compiled By Nancy Johnson
2010 KABVI Committees
2010 KABVI Directors
2010 Membership Application
Rehab Services Allows Kansas Blind and visually Impaired to Participate in Stakeholder’s Meeting
By Ann Byington, President
In early January,Mike Donnelly, Director of Rehabilitation Services sent out an invitation for stakeholder’s to attend a planning meeting on January 14, at the SRS Building in Topeka. My invitation came to my home email; KABVI did not receive one and neither did Michael. When questioned, mr. Donnelly said that of course KABVI was the intended recipient of the initial invitation. Apparently, representatives of the Centers for Independent Living from across the state and some members of the re-constituted KSBVI Advisory committee were on the initial invitation list. Michael shared the original invitation with approximately 140 more blind or visually impaired Kansans in the KABVI and our home email address books. The meeting was moved to the ballroom at the Plaza Hotel and facilitators from Wichita were hired.
KABVI members attending were: Nancy Johnson, Beulah Carrington, Marilyn Lind, Mikel McCary, Mark Coates, Paul and Trella Berscheidt, Michael and Ann Byington.
Additionally, (though us blind folk did not get any kind of introduction opportunity so I’m a bit less certain of my facts), participants represented the Talking Books program, KRCBVI staff and clients, Assistive Technology Project of Kansas, the National Federation of the Blind of Kansas, Envision, the Whole Person Center in Kansas City, Missouri and AlphaPointe, the Kansas State School for the Blind, and many, many other groups. The purpose of the meeting was to utilize Rehab. Services “guiding principles” to receive input from stakeholders to develop community capacity for delivering services to blind and visually impaired Kansans “where they live, work and attend school.” The only members of this group for whom plans are being made are persons working with Rehabilitation Services to become employed and the group of older blind served by Kan-SAIL. Students in transition from special education to independent living or work activities not covered by VR; persons without employment goals who need rehabilitation services to remain independent but raise children or serve as caregivers for older parents, and older persons who do not meet the narrow Kan-SAIL elegibility requirements were not to be considered in the planning.
Input was received on how to broaden both the guiding principles and particular services to be provided. In smaller groups, we reported back to the whole on how services should be defined, who should deliver them and what qualifications service providers should have. Not surprisingly, the National Federation of the Blind of Kansas (NFBK) urged that providers’ qualifications be based on functional ability; others requested Academy for Certification of Vision Rehabilitation and Education Professionals (ACVREP) certification, and the Independent Living folk acknowledged that persons familiar with the issues of blindness were preferred, as long as they espoused the philosophy/practices of the independent living centers. Real-time captioning of all responses was collected as well as all hand-written notes from each small group; all of which is to be pulled together and reported back to the attendees.
While the activity was good in that many diverse groups were heard, I kept wondering why SRS continues to need to re-invent the wheel. While noting the need to make change, I question Mr. Donnelly’s use of these difficult economic times as the motivating factor. I also feel that by rushing the planning of how service to blind and visually impaired Kansans will be delivered without the expertise or even the availability of the Rehabilitation Teaching program and the Kansas Rehabilitation Center for the Blind and Visually Impaired, SRS is opening the door to untrained, unqualified, service providers as well as accomplishing a fragmented service delivery system. Programs which have worked for fifty years will not be replaced or even established in six months. My biggest concern is that newly visually disabled Kansans will have no direct way of accessing a many-pronged, community-based service delivery system. The service recipients will not be able to request provider accountability, because they have no idea what they have the potential to learn. I hope the meeting was not simply another SRS exercise in futility.
By Nancy Johnson, Editor
Another year got away from me! With a new year came a new life style. This “senior” graduated … from employment, I guess. I wasn’t tired of employment, but now I’m “retired”.
Until I can find something I’d like better to do, I’m volunteering two days a week at KABVI’s office, continuing to chair the youth activities and public relations committees, serving on the projects and convention committees, and continuing as editor of KABVI NEWS. Much of this I can do from home, which allows me a little time to read and to spoil Frosty and Sidney … my canine house mates. Occasionally I get out the autoharp and play, and I go work out regularly.
We’ve been able to expand KABVI’s office space. There’ll be room to teach alternative techniques and I’ve volunteered to do some rehabilitation teaching.
A grant request was submitted to American Eagle Outfitters Foundation for funding to expand the Youth Activities Program, thanks to information provided by Linda Bricker. We should have a response after January 26 and still have our fingers crossed. I encourage everyone to keep alert to, and follow up on, information you may pick up in casual conversation and pass it along to KABVI when it might represent an opportunity for us to improve the organization.
Some of us attended a stakeholders meeting about services to blind and visually impaired Kansans called by Michael Donnelly, Director of Kansas Rehabilitation Services. Several people commented to me afterwards, “Aren’t the services they’re talking about the services that rehabilitation teachers have been providing all along?? My answer … “Yes, they are.” My hope is that KABVI can work cooperatively with Mr. Donnelly to develop a plan to provide the categorical services individuals with blindness and low vision need to function independently and, as much as possible, to fill in any gaps in services. We must be a part of the solution … not a part of the problem!
I make the same request every year and I’m going to do it again. This organization belongs to everyone who is interested in low vision and blindness and what happens to the people who live with these disabilities. Let’s start a new year on a positive note. We need the participation of every interested person. We’ll take your comments by email, phone, snail mail … or even in person! Tell us what’s happening in your community. Tell us what SHOULD BE happening in your community. Make suggestions about how KABVI can help and what YOU can do to make it happen … and then DO IT!
KABVI Steps Up To Help
By Michael Byington
KABVI has already reported that we fear massive cuts are coming in terms of programming that the Kansas Department of Social and Rehabilitation Services (SRS) has long been providing to blind Kansans. Those cuts are already starting to arrive.
As of December of 2009, the SRS eliminated seven of the eight state positions for rehabilitation teachers for the blind. Two positions were vacant and will not be filled. Three positions were forced into retirement even though the people filling them may not have been planning to retire; one position was laid off, and one position, though retained, has been assigned duties other than rehabilitation teaching.
Rehabilitation teachers for the blind have long been the first contact for newly blind and visually impaired Kansans and the major gate into the service system for Kansans who learn that they are losing some or all of their vision. KABVI has taken the position that these services are still urgently needed in Kansas,
One problem is that SRS has juggled funds over the years so that funding for many types of people who may need to see a rehabilitation teacher for the blind simply no longer exists. Funding streams that used to support the Rehabilitation Teaching Program can no longer be used for this purpose unless everyone on the caseload is actively preparing to seek employment. KABVI has taken every opportunity to let SRS know how shameful the mismanagement has been that has created this major service gap. Shaming SRS does not fix the problem though.
SRS has agreed to work on the funding conundrums, and KABVI has agreed to work cooperatively with them. It is doubtful, however, that there will ever be state-funded rehabilitation teachers for the Blind in Kansas again. As the economy improves, though, we are hoping to get a system in place where SRS funding will be available to support qualified rehabilitation teachers for the blind working in private practice with the entire population of blind and visually impaired Kansans who need the services.
That last paragraph sounds lofty for the future. It does not do squat, however, to help people who need rehabilitation teaching services today.
That is where KABVI, on a limited basis, is taking on a new venture. One of the rehabilitation teachers for the blind who retired was Nancy Johnson, whom most of the readers of this magazine know as your talented editor. Many readers may not know that Nancy is also a knowledgeable and capable rehabilitation teacher who was not ready to take up permanent residence in the pasture.
KABVI’s expanded office space a bit. Nancy has some classroom and workspace adjoining our offices. She will accept some rehabilitation teaching referrals. She will be able, to a limited degree, to come and see blind and visually impaired Kansans who need such services. Our new office assistant, Brandon Bruton will be available to do some driving for Nancy, so she has transportation to get out to see people even if they are not on public transit lines.
Like all of us who work for KABVI, Nancy will continue to be a volunteer. The rehabilitation teaching services she provides have value, and she should be paid for what she does, but currently there is no money. KABVI will continue to work to establish fee for service agreements so that at least clients currently deemed eligible can be served, and to investigate other funding sources, such as Home and Community Based Services. We hope, if Nancy is needed in the far reaches of the State, we will soon be able to negotiate some fee for service arrangements that will at least pay her travel expenses, hotel, boarding of her dogs, etc., so that no part of the State will be totally without competent rehabilitation teaching services.
One part time rehabilitation teacher for the blind, working out of the KABVI office, can not replace the work of seven laid off State positions. KABVI and Nancy, are teaming up to continue to do as much as we can. It is just one more in a long series of examples where KABVI will be doing a lot with very little.
Nancy has offered to work Tuesdays and Thursdays from 10:00 until 3:00. You can reach her at our office at 785-235-8990 or 800-799-1499.
KABVI Meets with Governor’s Staff
By Michael Byington
In addition to the cuts in field services for blind Kansans being initiated by SRS, the Kansas Facilities Closure and Realignment Commission has recommended that the Kansas Rehabilitation Center for the Blind and Visually Impaired (KRCBVI) be closed. These recommendations were sent to Governor Parkinson and, as this magazine goes to press, we have just heard definitively what the Governor will propose. The Closure Commission also recommended eventual closure of Kansas Neurological Institute (KNI), which houses many residents who are blind among its multiply disabled residential population. Governor Parkinson has said that KNI will remain open for at least the time being. He has ratified closure of the KRCBVI.
Realistically, the field program for Kansas Services for the Blind and Visually Impaired is going away, and the facilities based program is closing as well. This means that almost no identifiable state services for blind Kansans will continue to exist, KABVI made this point with the Closure Commission, and they agreed that this was a valid concern, The Closure Commission thus adopted a motion stating, that although they felt the KRCBVI should close, they supported the development of a strong advisory and planning commission to give input and planning to SRS and the Governor concerning services and issues of concern to blind Kansans. This body would be similar in structure to the Kansas Commission for the Deaf and hard of Hearing (KCDHH).
A couple of weeks prior to the release of the Governor’s responses to the Closure Commission’s recommendations, KABVI President, Amm Byington, and C.P.O., Michael Byington, were eventually able to meet with John Polzar, the person on the Governor’s staff in charge of dealing with the closure Commission’s recommendations. The meeting seemed positive, and Mr. Polzar seemed to understand the problems and the need. The Governor did create, by executive order, an Advisory Committee for Blind and Visually Impaired. The Executive Order issued, which is number 10-02, however, does not create an advisory and planning body with parity to KCDHH, or which would offer the necessary visibility for a Statewide presence of services for the blind and visually impaired to be maintained. KABVI has thus written to Governor Parkinson, thanking him for his efforts on behalf of blind Kansans, but explaining that what is needed is a body that is actually as legislatively empowered as KCDHH. KABVI has therefore stated its intent to request legislation which would in fact create a Commission for the Blind and Visually Impaired that has parity with KCDHH. This would be a much stronger planning body than the Committee created by the Governor’s Executive order.
2009 KABVI Scholarship Recipients
By Bob Chaffin, Scholarship Committee Chair
Editor’s Note: My apology to Bob Chaffin and scholarship recipients! Bob sent this important information for the last issue of KABVI NEWS and I missed getting it in.
Brenna Koch was awarded a KABVI scholarship for the third year in a row. She is from Auburn, Kansas and is attending Washburn University in Topeka. Her major is Business/Accounting. She has a very respectable grade point average after completing her first two years of college. Brenna is pursuing a Bachelor’s Degree with plans to follow that with a Master’s Degree in Accounting.
Brenna was actively involved in a 4-H program for 13 years. During that time she learned to care for and show cattle and learned the skills of cooking and needle arts such as quilting and cross stitch. During her first year at Washburn University, she was instrumental in getting a collegiate 4-H group started. She has served as President of the group for the past two years and has seen the group grow in numbers. Brenna would like to one day own her own business. She wants to earn a minor in Spanish so she can work with people in the Spanish community.
Brenna has lived with low vision from a young age and has learned to accept her disability and make necessary adjustments to be able to function in a sighted world. During high school she was in the National Honor Society, FFA, and band. At college she is involved in business clubs, Bible studies, and is on the leadership team of a ministry group. She has many activities to keep her busy and to help her be a well adjusted person.
Sarah Peterson was awarded the other scholarship this year. She graduated from Larned High School this past May and is attending Bethany College in Lindsborg, Kansas. She is working toward a Bachelor’s Degree in English education at the middle to high school levels. After completing her Bachelor’s degree, Sarah wants to pursue a Master’s degree for teaching the visually impaired.
Sarah was very involved in extracurricular activities during her high school years. Among those were membership in the National Honor Society in which she was secretary, president of her school’s Fellowship of Christian Athletes and participation in vocal music. As a result of her musical endeavors, she received superior ratings in regional and state solo contests and joined the KMEA State Honor Choir. The list of other honors and activities includes having poetry published in the “High School Writer” and “Creative Communication”. Sarah has been involved in many community activities outside of school. She has done volunteer work at the local movie theater, blood drives, her church nursery, and delivering food baskets to needy families. She has especially enjoyed serving as a historical interpreter/volunteer for the Fort Larned National Historic Site. In spite of all these activities, Sarah maintained a very high grade point average during her high school years.
Sarah was not always so outgoing and involved as she is now. Her early years were ones of shyness and living in a shell due to her poor vision and sensitive spirit. It was during her middle years of school that she decided to step out from the shadows and be a leader in her school and community. She has apparently succeeded in that quest. She says her lack of vision has taught her to see with her heart as well as with her eyes.
Keep up the good work Brenna and Sarah. A third well qualified person also submitted an application. Unfortunately, we were only able to award two scholarships this year. These students set an example of achievement and involvement that far exceeds that of most of the students in our education system today. We wish them the best as they continue their journey through their education and eventually careers.
By Bob Chaffin
Once again KABVI will be making two $1,000 scholarships available to blind or visually impaired students. To be eligible the student must be a resident of Kansas and attending a post-secondary school or college during the 2010-11 school year. Applications are available from the KABVI office or by contacting Bob Chaffin at firstname.lastname@example.org. The application can also be downloaded from the KABVI.com website. The deadline for submitting applications is April 15, 2010. Encourage anyone you know that meets the criteria to submit an application.
KABVI Expands Assistive Technology Recycling
By Michael Byington
For a number of years now, KABVI has attempted to do community service projects in “recycling” assistive technology among blind users. Blind and visually impaired people, or the families of such people who have died, donate assistive technology items useful to the blind and visually impaired. KABVI then stores the items until someone else needs them, and then “recycles” such items back into the community to serve additional visually impaired or blind users. We charge nothing for smaller, less expensive items, such as talking clocks, white canes, talking calculators, etc. We charge very low fees for larger ticket items such as Braille writers, closed circuit television magnification devices (CCTV’s), etc. The charges for the larger ticket items are perhaps ten percent of what the gadget is worth, and we do not make any money from them, but this helps us pay the rent so we can afford storage space to continue operating this program.
From the inception of the program, we have also wanted to help with recycling of computers and to help blind and visually impaired users find low cost screen-reading or other access software so they can use these computers. The technological knowledge and need for parts and software to refurbish has caused this part of our recycling program to get off of the ground much more slowly. We are now pleased to be able to report a couple of giant steps forward.
KABVI is now a fully licensed Community Microsoft Authorized Refurbisher, (MAR). With this credential, we can purchase refurbishing software, and some hardware, at vastly reduced prices.
We have gotten donations of a whole room full of computers from five different large firms and from at least four individual users. These were all stacked rather haphazardly in a room that is about twelve feet by nine feet, along with all of the other assistive technology recycling stuff. It was hard for our volunteer technicians who come in to work on computers to do much actual refurbishing work because that room was just too small and too crowded to provide adequate work space. The computers would thus have to be gotten out, put on one of the conference tables to be worked on, and then, when the volunteer technicians had to leave, they had to put everything away. These inconveniences have resulted in a very low number of computers getting recycled thus far. I think that to date, a total of two have been put back out into the community..
Thanks to a grant from Envision, this is changing. As this magazine goes to press, things are in transition, and are a mess at the moment, but it is going to be a wonderful transition. We have added a total of 310 square feet of office space to the KABVI office suite. We still have a conference room/class room, a Braille production office, and a couple of other offices for attempting to keep everything afloat, but the big addition is that we will now have a roughly 370 square foot assistive technology/Microsoft Community MAR recycling area. This will allow us to store 50 to 100 desktop computers for parts and recycling, and to additionally have permanent work space for our volunteer technicians.
We are not up and running yet, but the M&M guys, (Mikel McCary and Michael Byington) have been busily putting together shelving units this week and getting equipment that we already have collected stored onto them. Mikel McCary has designed the work stations, and he and another volunteer technician, Jeff Eason, plan to get the wood to put these units together within the next month.
Have patience folks. We are just a bunch of part time volunteers around this joint, but KABVI is moving forward and doing stuff, and some of it is definitely going to mean increased activity in assistive technology recycling.
Thanks to Envision for the money to make this expansion possible. Thanks to Mikel McCary and Jeff Eason for all of their hard work, and thanks to all of our members and supporters who have, and will continue, to donate computers and other still serviceable assistive technology.
Even when the State claims it has no money, it has a lot more than we do at KABVI. Yet the State says it can do almost nothing, while with a little help from some of our other not-for-profit friends, it is amazing how KABVI manages to do so much with so little.
KABVI Life Members
By KABVI Elder, Joanne Hackerott
I am so pleased to learn that a long time KABVI member has recently sent in life membership dues. Don Enos, a member of KABVI and WAVH for many years, has decided to join that small group.
Don retired from Beech Aircraft in 1997 after working there for thirty-five years. Jeannie, his wife of forty-six years, died in 2006. He has a son, Dean Enos, who lives in Wichita, and a sister who lives in California. Don grew up in Wood County and attended school in Toronto. He first met Jeannie at KSSB, then again at the shop in Wichita. They dated for two years, and then married. Don had been thinking about becoming a life member for some time, finally decided the time was now.
I could not remember anything about Life Member Marion Armstrong so gave her a call and enjoyed learning a little about her. She worked at Menninger's as a transcriptionist for twenty years. She then moved to Alma after she retired in 1975. .
KABVI Life members include: Marion Armstrong, Alma; Floyd Britting, El Dorado; Ann Byington, Topeka; Michael Byington, Topeka; Don Cox; Mike Dreiling, Wakeeney; Don Enos, Wichita; Joanne Hackerott, Wichita; Rebah Hubbard, Wichita; Archie King, Parsons; Joy Lingle, Oklahoma; Eleanor Dockers; Perry Schuetz; and Jo Wullenschneider.
Records have somehow gotten rusty. We would like to ensure that our Life membership list is correct. If you have knowledge of any other Life members, would you please let us know?
This year would be a great time to upgrade your KABVI membership. A donation of $250 makes you a Life member. Becoming a Life member entitles you to membership in KABVI for the rest of your life without your having to pay dues ever again.
Report from the Board of Directors
By Nancy Johnson, Recording Secretary
President Ann Byington convened a meeting of the KABVI Board of Directors in the conference room at the KABVI corporate office on January 30, 2010. Present were ten directors three of whom attended by Skype and one by speaker phone. Two directors were absent. No guests attended.
KABVI received a $2000 donation, which was deposited to the scholarship account.
Office expansion has made it possible to better organize KABI’s space so there is an office for the CEO, one for braille production, and one for the office assistant. The Technology volunteers have a work space with shelving and everything up off the floor. They still need a good work table. KABVI was able to obtain a large room adjacent to the existing area, which provides conference room space for meetings and a work space that can be used for teaching. As rehabilitation teaching services are needed, Nancy Johnson, who has volunteered two days per week in the office for that purpose and to assist with other work, will teach from there. An office assistant was employed with a grant given to KABVI to hire persons with disabilities. He works 5 hr per day. His duties include driving, making copies, preparing large mailings such as the membership mailing, answering the phone, reading, and other activities as needed. For the first time, KABVI had to sign a lease for office space. Additional liability insurance had to be purchased at $300.
Ann and Michael Byington plan to attend the American Council of the Blind (ACB) annual President’s meeting and legislative seminar in Washington in February.
About 140 people attended a Stakeholder’s meeting January 14. The purpose of the meeting was to discuss ways community agencies can assume responsibility for providing rehabilitation teaching services. Stakeholders were generally well represented.
KABVI entered an agreement with Nanopak, a distributor of assistive technology, to provide space in Topeka for them to host a demonstration of equipment for an estimated 40-50 participants sometime in February. Because the Rehabilitation Center for the Blind is closing, that facility is no longer available for such events. The event will cost KABVI no money. The organization is responsible only to provide space. KABVI does not support any specific brand of equipment or venue.
The library’s Horizons Task force developed two new programs to improve Talking Book Services. Recommendations will be made to the newly hired state librarian, who will come to Kansas from Iowa. There seems to be a move to debunk Emporia as the state library. A tour has been arranged for sometime in February. Plans are for the present building to be renovated and more space made for Talking Books materials. Emporia is the least expensive space available. Ann Byington will meet with SRS budget representatives concerning saving Talking Books services for individuals who do not have the technology, knowledge, or ability to do their own downloads. She will represent that group at Monday’s budget meeting.
Microsoft disks are here. The technology recycling program is expected to begin taking applications for all types of equipment in the near future. Please contact KABVI or go to www.kabvi.com to get an application. Knowledgeable volunteers are still needed to help check donated computers. Jeff Eason is now employed and hasn’t as much time to donate to KABVI. The application lists equipment in addition to computers and CCTV’s. Donated equipment is being sorted and stored. It will then be checked and an inventory created. A donation of $150 is expected to cover the cost of a refurbished computer with assistive technology.
www.kabvi.com, the organization’s web site, receives up to 45 hits a day. Recent additions to the site include a picture of the office building, a scrolling marquee, and a legislative section with links to the bill on quiet cars. KABVI’s updated scholarship information will be put on the web site, including the request that students notify KABVI when they receive their scholarship checks. The Scholarship deadline is April 15. KABVI now has a page on Face Book that includes a link to ACB’s scholarship information.
The quiet car bill could be moved onto the floor with the possibility of passing.
SRS apparently has no interest in providing services to blind individuals who are not looking for work. Closure of the Rehabilitation Center for the Blind has been announced to occur between April and July. The Governor’s office will ask for a commission for the blind and visually impaired that would be similar to what the deaf have. KABVI was asked to write those requirements. The governor decided to make the changes through an executive order. Executive Order 10-02 does reinstate the advisory committee but doesn’t provide a commission equal to the Kansas Commission for the Deaf and Hard of Hearing (KCDHH), which is what is needed. The legislation should be drafted by February 1, but it doesn’t help to build back services. A letter, supported by the Board of Directors, was written to the governor expressing KABVI’s concerns and the need to parallel KCDHH.
Applicants who have previously received scholarships are asked to update their biographical sketches. Boards of education, departments of Special Education, and teachers of the visually impaired are asked to make students aware of the availability of scholarships from KABVI and to have them submit their applications by April 15.
Three hundred membership renewal letters are going out soon. KABVI has 538 names on the mailing list. KABVI NEWS goes to 116 email, 34 braille, 8 disk, and about 300 tape and print readers. In March of each year, KABVI sends membership dues to ACB. The number of members submitted determines the number of voting delegates Kansas can have at the annual ACB convention in July, so we need your information returned quickly.
Consensus was for the convention to be held in Wichita in October in collaboration with Envision.
Nancy Johnson participated in a telephone conference with members of the American Eagle Outfitters (AE) Foundation Grants Committee in which she explained that KABVI is an advocacy organization and does not provide medical help. To reach blind and visually impaired Kansas youth and their parents, KABVI has attempted to work through the teachers of the visually impaired, who must get the information to the parents and students. AE wondered if legislators might be able to pass the information along to school boards across the state. They also thought perhaps KRCBVI and KSBVI could pass the information along. Nancy explained that these are the services that have gone away.
If the grant is received, KABVI would use the requested $2,500 by giving one or two more scholarships totaling $1,000, using $1,000 to develop a program and carry it to young people throughout Kansas, and using $500 for Public Service Announcements to make people aware of the program. The committee has not developed a statewide program because no funding has been available to carry one out. If KABVI is fortunate enough to receive the AE grant, planning for a statewide program will be set in motion.
Planning is in progress for the third annual Eyes Wide Open golf tournament sponsored in conjunction with Topeka Lions. Several types of sponsorship are available. Members across the state are asked to let KABVI know of businesses that might be interested in becoming sponsors. Contact KABVI for brochures. The more sponsors KABVI has, the less KABVI must spend. Also, KABVI needs sports-related items to use as door prizes. The tournament date is August 20 at Cypress Ridge in Topeka.
Skype still needs work before it can be relied upon for meetings. Free conference calling is being considered until the Skype system can be made reliable.
The next meeting of the KABVI Board of Directors will be in Wichita on May 1.
New Voice at the KABVI office
By Michael Byington
When you call the KABVI office, you may hear a new voice answering the telephone. You may hear, “KABVI, Brandon Bruton Speaking; how may I help you.” That’s our new guy.
You ask, “How could KABVI afford to get a new guy?” After all, everybody knows we’re a poor, not-for-profit, struggling to remain afloat like many others.
Brandon is provided to us through assistance from a business group called Around Town Media Group, a public education and public relations firm that works with many other companies doing work to reclaim troubled areas and to craft partnerships between the not-for-profit sector and the business sector. Currently, Around Town Media Group, for example, is working with companies that are restoring the 9th Ward of New Orleans.
We appreciate their reaching out to help us advance our advocacy and service building agendas for blind and visually impaired Kansans by providing us with an extra set of capable hands to do some of the day to day tasks around the office. The length of the assistance from this source has not yet been determined, but until further notice, and for the foreseeable future, Brandon will be with us five hours per day, helping with telephone, mailings, filing, office organization, driving for blind KABVI officers and other volunteers who need to attend meetings, and doing that all-important “other duties as assigned” kind of stuff.
Why Light Hurts During Migraines
By Amanda Gardner, (HealthDay News) – Jan. 10
Researchers believe they know why light exacerbates the already debilitating pain of migraines, even in some blind people.
A report published online Jan. 10 in Nature Neuroscience reveals how visual and pain pathways in the brain converge to produce this phenomenon.
Although the findings are
unlikely to help migraine patients in the near future, "this gives us a little
better insight as to the theory and mechanism behind migraine," said Dr. Michael
Palm, an assistant professor of neuroscience and experimental therapeutics and
medicine at Texas A&M Health Science Center College of Medicine, College Station, and director of the Parkinson's and Headache programs at Texas Brain and Spine Institute in Bryan.
"We are making progress in understanding this phenomenon," he said.
The Boston-based researchers report there are cells in a part of the brain called the thalamus "where information from the visual system and information from the pain system converge, and that anatomic convergence provides the first available explanation for how it could be that light makes pain worse," added Dr. Richard Lipton, director of the Montefiore Headache Center and professor of neurology and epidemiology at Albert Einstein College of Medicine in New York City.
About 85 percent to 90
percent of all migraine sufferers report having photophobia, which is when light
makes the pain worse, said study senior author Rami Burstein, an associate
professor of anesthesia and
neuroscience at Beth Israel Deaconess Medical Center and Harvard Medical School in Boston.
"We had no clue in the world where in the world light and pain talk to each other in the brain," Burstein said. "They have completely different pathways in the brain."
"For light to make pain, those pathways would have to converge at some level," Lipton noted.
To solve the paradox, the
team studied 20 blind individuals, all of whom suffered from migraines. Six
participants had no light perception at all and no functioning optic nerve.
These individuals also
experienced no photophobia. The remaining 14 people could sense light and dark and also experienced photophobia.
"This told us that the optic nerve is critically needed in order to produce photophobia or exacerbation of the headache by light," Burstein explained.
The researchers next discovered that a set of photoreceptors called melanopsin project onto neurons on the thalamus that also process pain signals.
"If we wanted to understand how light makes the pain worse, we needed to follow in the brain the pathways that lead from the eye into the brain using the third group of photoreceptors," Burstein said. "That is the connection so at that point we shifted to animals."
The thalamus is the brain's sensory switchboard, receiving sensory signals from different parts of the body then redirecting them to various sensory, motor and cognitive areas of the cortex.
"We identified a new
pathway in the brain that originates in the eye and goes to the brain areas
where neurons are found that are active during migraine attacks," Burstein
said. "The light can increase the
electrical activity in neurons that are active to begin with."
The findings should put to rest any thoughts that patients exaggerate their sensitivity to light, Lipton said. "This provides an anatomic and physiological basis for a common experience -- that light makes pain worse, not because you're a whiner, but because there is an anatomic pathway that links the visual system to the pathway that produces head pain," Lipton said. "That odd bit of clinical symptomatology has a firm basis in brain science."
The Voices of Our Youth
Compiled by Nancy Johnson
KABVI applied for a grant through the American Eagle Outfitters Foundation. Details can be found in “Report From the Board of Directors” in this issue of KABVI NEWS. We should have results soon.
Do you remember being young? I do … and I remember some of the things that were important to me. I want you to:
· Believe in me so I can believe in myself. Believe I’m a good, capable person.
· Know that you’re important to me, even though sometimes it’s hard for me to tell you.
· Be fair and respectful and treat me as an equal even though I’m young and inexperienced.
· Acknowledge my differences. They make me the unique individual that I am.
· Recognize my changes. Help me work through them.
· Have conversations with me often. Respond sincerely when I initiate a dialog. Sometimes that’s hard for me.
· Listen to me … don’t just hear me. I have ideas and thoughts to share. I need your understanding and your feedback.
· Tell me clearly what you expect of me and keep those expectations consistent. I become confused and frustrated when I don’t understand what’s wanted or when expectations change from day to day.
· Help me prepare for adulthood while at the same time respecting my youth. Teach me to channel my energy and creativity toward positive goals.
· Learn to know ME … the PERSON I really am!
Aren’t these the same things we want from one another when we’re “grown-ups”? As I look back from the vantage point of an adult, I realize I wanted these things even when I was very young. Those who gave them to me as I grew are the people I now credit with helping me develop into the person I’ve become.
Compiled by Nancy Johnson
Census to Begin:
With the U.S.. Census process beginning, the Better Business Bureau (BBB)
advises people to be cooperative, but cautious, so as not to become a victim of
fraud or identity theft. The first phase of the 2010 U.S. Census is under way
as workers have begun verifying the addresses of households across the country.
Eventually, more than 140,000 U.S. Census workers will count every person in the
United States and will gather information about every person living at each
address including name, age, gender, race, and
other relevant data.
The big question is - how do you tell the difference between a U.S. Census worker and a con artist? BBB offers the following advice:
· If a U.S. Census worker knocks on your door, they will have a badge, a handheld device, a Census Bureau canvas bag, and a confidentiality notice. Ask to see their identification and their badge before answering their questions. However, you should never invite anyone you don't know into your home.
Census workers are currently only
knocking on doors to verify address information. Do not give your Social
Security number, credit card or banking information to anyone, even if they
claim they need it for the U.S. Census. REMEMBER, NO MATTER WHAT THEY ASK, YOU
REALLY ONLY NEED TO TELL THEM HOW MANY
PEOPLE LIVE AT YOUR ADDRESS. While the Census Bureau might ask for basic financial information, such as a salary range, YOU DON'T HAVE TO ANSWER ANYTHING AT ALL ABOUT YOUR FINANCIAL
· The Census Bureau will not ask for Social Security, bank account, or credit card numbers, nor will employees solicit donations. Any one asking for that information is NOT with the Census Bureau.
· AND REMEMBER, THE CENSUS BUREAU HAS DECIDED NOT TO WORK WITH ACORN ON GATHERING THIS INFORMATION. No Acorn worker should approach you saying he/she is with the Census Bureau.
Census workers may contact you by telephone, mail, or in person at home.
the Census Bureau will not contact you by E-mail, so
be on the lookout for E-mail scams impersonating the Census. Never click on a link or open any attachments in an E-mail that are supposedly from the U.S. Census Bureau.
PLEASE SHARE THIS INFORMATION WITH FAMILY AND FRIENDS.
The Foundation Fighting Blindness will host its 3rd Annual Kansas City VisionWalk on Saturday, June 19, 2010 at Frank A. Theis Park. Registration begins at 9:00 a.m. and the Walk will start at 10:30 a.m. This 5K family friendly walk features plenty of things to keep everyone busy in the morning, including a bounce house, DJ, LuLu Bell the Clown, facepainting, mascots from local teams to entertain the kids, and light refreshments.
The event will raise money for the research that will lead to cures for retinal degenerative diseases, including retinitis pigmentosa, macular degeneration, Usher syndrome, Stargardt disease, and numerous others. These diseases affect more than 10 million Americans of all races, ages, and ethnic groups,.
Beautiful Theis Park is located right next to Kauffman Memorial Gardens (where you can park) and just south of the Nelson-Atkins Museum of Art at the intersection of Oak and 47th Streets (47th is also called Emanuel Cleaver II Boulevard). The event will take place at the small outdoor amphitheater right along Brush Creek at the south end of the park. The site will be easy to spot with tents and our huge blue and yellow balloon arch!
Last year, the walk raised over $75,000, with large sponsorships from the PGA Tour, Cosentino’s Price Chopper, Walmart/Sam’s Club, Frye’s Electronics and others. The Foundation Fighting Blindness is the world’s largest private funder of research for retinal degenerative diseases, and has raised more than $370 million since its inception in 1971. Our urgent mission is to drive the research that will provide preventions, treatments and cures for people affected with diseases such as retinitis pigmentosa and Usher syndrome, which are inherited diseases commonly diagnosed during childhood or young adulthood.
To participate in the Kansas City VisionWalk, or to learn more about supporting local or national VisionWalk events or the Foundation Fighting Blindness, visit www.VisionWalk.org and click on the Kansas City VisionWalk link. Or call Steve toll-free at (866) 782-7330.
OH SAY, CAN YOU SEE - National Braille Press now offers tactile American flags for $5 each. The stars and stripes are tactile; the red stripes are indicated with a braille “r” and the white with a “w." Flags measure 7 1/2” x 9 1/2”. These flags also include The Pledge of Allegiance in both braille and large print. Flags are available in contracted and uncontracted braille. To see one for yourself, visit www.nbp.org/ic/nbp/FLAG.html. For more information, call NBP at 1-800-548-7323.
How to Get Free Or Low-Cost Prescription Drugs: Unfortunately many Americans, including people with disabilities, cannot afford to buy prescription drugs because either they aren't insured or their health insurance doesn't cover their medications. Thankfully, there are several organizations that are there to help you get the prescription medication you need.
Many local drugstores
located inside of grocery stores are trying to bring in customers by offering
free antibiotics. To find a local drugstore near you
participating in this offer for free antibiotics, you will have to call all of the grocery store drugstores in your area. Many grocery store clubs will send out a post card with this offer so keep your eye on the mail. It is a good idea to sign up with all of the grocery store clubs in your area to get these offers. Some of these offers are only good for club members. Visit the Partnership for Prescription Assistance website. Here you will be directed to the prescription drug assistance programs that fit your personal needs based on eligibility. Montel Williams is the spokesperson for this program so you may remember seeing his public service announcements or his plugs on his television program for prescription drug assistance. For more information on this program, call 1-888-4PPA-NOW (1-888-477-2669) or visit their website at www.pparx.org.Talk to your doctor about your need for free or low cost medication. Very often your doctor will have free medicine samples in his/her office and they will be happy to give them to you. Be sure to ask your doctor for generic prescriptions when possible. Not all generic drugs are as good as their name brand counterpart but many of them are just as good. Many insurance companies will offer reduced co-payments for generic drugs that may be more affordable.
Your doctor may also have
coupons for free prescription drugs given to him/her by the drug manufacturer.
Your doctor may also be able to sign you up for free prescription drug
programs. Here is a source for additional assistance, but be cautious when
dealing with third-party concerns. There are often costs involved that may not
be obvious. Free Medicine Help Through Prescription Assistance Programs
Above information was
Braille Knitting Patterns: http://www.lionbrand.com. In response to an email from a blind knitter who wanted to use our patterns, we programmed a template so that all of our over 1,000 free patterns could be ready by a Brailler machine, that creates Braille from text or by a text to speech reader. The response was overwhelming, with the most (in terms of enthusiasm and quantity) positive comments we have ever received. Our site has been up since 1995. Most people who responded were not blind. They just appreciated what we did so much that they swore to buy our product exclusively from now on. Our next programming adjustment will be to make all of our patterns available in large type. The motivation to do this evolved from our first modification when we realized that appealing to people with special needs was good all around.
Compiled by Nancy Johnson
Central Kansas Association for the Visually Impaired (CKAVI) bought Christmas gifts for three children. CKAVI has 24 members, ten of whom are Life members.
Topeka Association for the Blind and Visually Impaired (TABVI) enjoyed a Christmas party at the home of Michael and Ann Byington. Good music, good food, gift exchange, and good company were shared. January, the month of icicles, found nearly everyone snowbound, so no meeting was held.
Northwest Kansas Association for the Visually Impaired (NKAVI) learned how treatment for back pain is treated on a decompression table. They enjoyed a white elephant gift exchange. Members were informed of the changes taking place in state services to the blind and visually impaired and what KABVI is trying to do to help.
Southwest Kansas Association for the Blind and Visually Impaired (SKAVI): Daisy Wasson’s receipt of the Extra Step Award from KABVI was recognized.
May 2010 be as productive as 2009 has been … or even more so. May all of you and yours enjoy health and contentment. And please don’t forget to keep sending those chapter newsletters. This column wouldn’t happen without them. Thanks for your contributions. They ARE appreciated!
Bertha Adams died December 16, 2009. She was the mother of Barbara Alexander. Barbara is the wife of Sanford Alexander, who was president of KABVI for several years. Mrs. Adams requested no funeral or special services.
Mike Dreilling, Wakeeney, had his newsletter returned to KABVI marked “deceased”. We have received no other information.
2010 KABVI Committees
Awards: Chair - Kathy Dawson; Members - Joyce Lewis, Nancy Chaffin, Paul Berscheidt, Darlene Howe, Marilyn Lind
Convention Planning: Chair - Michael Byington,
Arrangements: Michael Byington, Mikel McCary, Joyce Lewis, Terese Goren, Kathy Dawson
Program: Mark Coattes, Ann Byington, Joyce Lewis, and Nancy Johnson.
Education: Chair - Ann Byington: Members - Phyllis Schmidt, Marilyn Lind, Katie Kincy
Local Communities Projects: Chair - Paul Berscheidt. Members – Nancy Johnson, Mikel McCary, Phyllis Schmidt. (Note: The goal of such a program is to insure that Kansans of all ages and their families, wherever they are in the state, will be able to receive the categorical training that will allow them to achieve maximum self-sufficiency and employability.
Finance: Chair - Robert Chaffin. Members - Marilyn Lind, Michael Byington, Ann
Byington, Ron Kaplanis.
Legislative: Chair - Mark Coates. Members - Michael Byington, Beulah Carrington, Terese Goren, Ron Kaplanis, Marilyn Lind, Katie Kincy, Henry Staub.
Membership: Chair - Mikel McCary. Members –Linda Bricker, Beulah Carrington, Nancy Johnson
Public Relations: Chair - Nancy Johnson. Members - Bill Moore, Paul Berscheidt, Ann Byington, Darlene Howe.
Technology: Chair - Mikel McCary. Members - Paul Berscheidt, Michael Byington, Terese Goren, Ron Kaplanis, Bob Chaffin, Jeff Eason.
Scholarship: Chair - Robert Chaffin. Members - Phyllis Schmidt, Ann Byington, Katie Kincy
“Eyes Wide Open” Golf Tournament: Chair - Mark Coates. Members - Michael Byington, Ann Byington, Marilyn Lind, Paul Berscheidt, Nancy Johnson
“Dinner in the Dark”: Chair - Mikel McCary. Members - Ron Kaplanis, Michael Byington. (Note: This project was tabled until a later date.)
Resolutions: Chair - Michael Byington. Members - Mark Coates, Mikel McCary
Youth activities: Chair - Nancy Johnson. Members - Julia Fonseca, Phyllis Schmidt, Beulah Carrington, Mark Coats, Terese Goren, Linda Bricker, Ann Byington.
2010 KABVI Board of Directors
Please send all correspondence e-mail, surface mail, or phone contacts, to:
603 SW Topeka Blvd. Suite 304 B,
Topeka, Kansas 66603
Telephone: 785-235-8990 or,
in Kansas only,
Web site: www.kabvi.com
Note: Shown after the
Directors' names is the year their current terms expire.
1. Nancy Johnson, Recording Secretary and KABVI
NEWS Editor, 2010
2. Beulah Carrington, 2010
3. Ann Byington, President and KABVI NEWS
Associate Editor, 2010
4. Katherine (Kathy) Dawson, 2010
5. Ron Kaplanis, 2011
6. Bill Moore 2011
7. Paul Berscheidt 2011
8. Terese Goren, 2011
9. Michael Byington, CEO and Corresponding
10. Robert (Bob) Chaffin, Treasurer, 2012
11. Mark Coates, Vice President, 2012
Mikel McCary, Membership Secretary, 2012
2010 KABVI Membership Application
____ Enclosed is $10.00 for my 20010 KABVI dues.
____ Enclosed is $250 for my Life Membership.
_____Legally blind _____Visually impaired
I would like the KABVI NEWS and THE BRAILLE FORUM in:
_____Braille _____Large print _____
_____ Cassette _____Regular print ______Email
_____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.