KABVI NEWS
Published Quarterly
An Affiliate of the American Council of the Blind
Mission
"To make every blind and visually impaired Kansan a self-sufficient citizen."
Volume 53 summer, 2010 No. 2
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
E-mail: kabvi@att.net
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
Supermom1941@sbcglobal.net abyington@cox.net
Chairman of the Board and President
Ann Byington
909 SW College Avenue
Topeka KS 66606
(785) 233-3839
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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.
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Table of Contents
What’s Happening? By Ann Byington, President
I Am Leaving, but I Am Not Leaving – By Michael Byington
So … What is the Plan? By Nancy Johnson, Editor
Outstanding Individuals Sought – By Kathy Dawson,
Awards Committee Chair
Getting the Most from a Finger Stick – Compiled by Bill
Lewis
Report from the Board of Directors, By Nancy Johnson,
Recording Secretary
Voices of Our Youth, Compiled By Nancy Johnson
An Ultimate Human Gift – By Clara Kilbourn, The
Hutchinson News
Letters to the Editor – Compiled by Nancy Johnson
Tantalizing Tidbits, Compiled by Nancy Johnson
Chapter Chatter, Compiled By Nancy Johnson
By Ann Byington, President
As we head to Wichita for the spring Board meeting, I yearn to quote the first line of Charles Dickens’ Tale of Two Cities: “It was the best of times; it was the worst of times…”
** As we knew it would, the Kansas Rehabilitation Center for the Blind and Visually Impaired officially stopped providing service to clients at the end of March. After some judicious pleading, KABVI has managed to acquire a portion of the braille materials which were part of the library in the training building and dormitory. KABVI has also garnered some equipment, the usefulness of which has yet to be determined. The State provided shelving for the books, as well as several boxes of tractor-feed braille paper. State workers also moved this material and assembled most of the shelving; we are in the process of unpacking it so that boxes may be returned and we may organize it so that we can share what is available. Our agreement with VR is that said materials/equipment will be made available to and used by blind and visually impaired Kansans. While it might appear that the state is doing us a favor by sharing this material, KABVI will need to write grants to pay for the additional office space we have had to acquire to house it.
** One component of Governor Parkinson’s Executive Order 10-01 mandated that Services for the Blind and visually Impaired create an advisory committee to be appointed by the Governor and responsible for developing a written report as part of the state Vocational Rehabilitation Plan. And, now that there are few services to oversee, such a committee has been appointed with Kabvi members on it. Sadly, state legislators did not agree to KABVI’s proposal that the blind of Kansas should have a Commission similar to the KS Commission on Deaf and hard of Hearing. Such a Commission would have had the potential of intervening for service improvement directly to the Governor. We have, however, gained a bit by becoming a committee appointed by the Governor and able to report to him, instead of being one which received lip service from Social and Rehabilitation Services and which was then mostly ignored.
** KABVI hosted a “Vision Awareness Day” on April 22nd with Vince Cianfrone, NanoPac and Ron Miller and Charley Anderson, Freedom Scientific. We learned about new features in JAWS 11, the newest array of scanning devices which work with Open Book, video magnifiers, and much, much more. We hope Vince will be able to bring many of these items to the convention.
** The Horizon Task Force continues to move forward with plans for re-organizing the Talking Books program. Final recommendations are being developed to present to Jo Budler, the new state librarian. Jo is a very personable lady who, though she hails from New York City, has worked and lived in Nebraska, Ohio and Michigan. She attended the most recent meeting of the Advisory Council for the Talking Books program. Jo is adamant that making audio books and services specific to blind users a component of public libraries is just as important as having print books for sighted patrons.
** Though Michael has touched on the coming changes for KABVI in his article, I should note that the next few months hold new adventures for both of us. I go to KSDS May 9th for training with guide dog #6. Two or three days after I come home, Michael heads off to Lubbock, TX for his summer stint of campus life in graduate school. It looks like we will see each other again in Phoenix at the ACB convention. I will be spending a bit more time in the office but Nancy and Brandon will still be holding down the fort.
I Am Leaving, but I Am Not Leaving
By Michael Byington
From roughly 1981 through 1988, and again from 2004 through the present, I have been KABVI’s most frequent spokesperson on systems advocacy, legislative, and administrative issues. I did some of this kind of work during other years as well, although my employment during those times kept me from doing it as comprehensively.
I will be leaving that spokesperson/advocacy role with KABVI as of the start of the 2011 Legislative session . I want to explain why and tell about what I will be doing instead.
I also want to review what I have seen happen with services for blind and visually impaired people, over the nearly 30 year period that I have been involved with advocacy relating to those services. I will make some prognostications as to where I think we will need to go from here.
Lastly, I want to examine how KABVI may be able to continue to do some of the advocacy tasks that I have largely been responsible for doing. That will involve some of you readers.
While working for KABVI, essentially as a volunteer, over the past 30 years, I have managed to make a living in the human service profession. Some of the human services jobs I have held have related directly to blindness and visual impairments. Others have been more general, or have worked primarily with other disability groups. Some jobs have been in the private sector, but from 2004 through late 2009, I worked for the State’s Service unit for blind and visually impaired.
I left State employment in 2009 because it had become clear to me that State officials were going to shut down almost all of State Services for the Blind. They tried to do this before, particularly in 1999, but consumer advocacy, largely with KABVI leading the charged, stopped this from happening. It was clear to me that this time, with the economy of the State being in such bad condition, we were not going to be able to stop the shut down. Indeed, the last remnants of any categorical services for blind Kansans, offered by the State, are no more. By January of 2011, I do not expect there to be any aspect of Kansas Services for the Blind and Visually Impaired left.
With any categorical services for the blind in Kansas being offered only by private providers, I decided that, if I am going to continue to work in the field over the last ten years or more of my working life, I had better get some additional credentials that the private sector wants. I have thus returned to Graduate School and am working on my Certified Orientation and Mobility Specialist (COMS) credential. At the beginning of 2011, I will complete my internship, and will then be working full time as a COMS. This means I will be traveling a lot, and will not have time to do much systems advocacy.
As I look at the last 30 years, I am proud of what KABVI has done, and was pleased to have a role in accomplishing it. Every time State officials decided to cut most of State Blind Services, they were only able to cut a little. KABVI’s advocacy efforts saved the rest. We celebrated a sort of bittersweet victory each time because we only lost a little. We used the logic that, if we lose State services for the blind, we will never be able to get them back, so we were fortunate to keep most of it. The fact is, however, if a little bit is chipped off of a rock each year, eventually, there is no rock left to lean on. This has been the final year. Now there will be no State Blind Services left.
This means that KABVI must take several new approaches. As advocates, we need to build a new service system to insure that blind and visually impaired Kansans will have the services that they need. This time, we probably need to build that system in the private sector. We need to help current private providers of categorical services for the blind and visually impaired, who are doing a good job, expand what they are able to do, and we need to bring new private categorical providers into the mix so that services can still be available on a statewide basis. If we build the system in the private sector this time, then a bunch of wrong headed, selfish, narrow minded State bureaucrats will not be able to take it away from us again. It is very appropriate that the new system should still receive some government monies. After all, if we believe in ourselves as blind and visually impaired citizens, then we should believe that it is worth spending some tax monies to rehabilitate us so we can work and live more independently. The key is to not let the government decide what is best for us. Government officials have simply stopped listening to us, and they do not do what we tell them would make sense. It is probably better if the government simply purchases the results from the private sector and lets us figure out the methods.
Now, the question becomes one of what KABVI’s role should be in this new scenario. In the short term, we have taken on provision of more direct services than we ever have before. This is because no one else is doing anything in many areas of the State, and some services and historical knowledge about what works for blind and low vision people has to be preserved. Nancy Johnson is working out of our office doing rehabilitation teaching, sometimes on a statewide basis. As you will read elsewhere in this issue, we have taken over stewardship of the State’s Braille collection. We are offering a few other direct services as well such as: Benefits advocacy; assistive technology recycling; and, information and referral.
Still, on the longer term, I would advise against KABVI’s developing the goal of becoming a major service provider. For over 90 years we have been the major advocacy voice in the State for blind and visually impaired Kansans. We will need to continue that role. We simply need to do so more with the private sector and deal with the Government only for funding without asking them to define the specifics of service models.
The above may take a different style of advocacy than has been provided over the years by this old, gray- bearded policy wonk. It is probably an appropriate time for me to be transitioning roles.
During my last few months working a lot here in the KABVI office, I intend to do as much grants work and fundraising as possible. I want to stabilize a funding base so we can pay someone to replace some of the efforts I have provided over the years.
That does not mean, however, even if I am fully successful, that the advocacy stuff can be left to the paid staff. KABVI has always been directed in its advocacy efforts, from the ground up, by its consumers. It needs to remain that way. The current KABVI President, Ann Byington, has retired from full time employment. She has already taken over some of the legislative testimony, etc. that I used to do. What is more, she is proving to be good at it. She can not do it alone either however, and is going to need the help of many. So in this article, I am essentially asking for new blood. I want new people to step up.
I am certainly not leaving KABVI. I will be around the office as much as possible, stuffing envelopes, consulting, helping write, helping the new folks learn a few of the idiosyncratic aspects of Kansas Government, etc. I will simply be more in the background. I am just giving notice about some of the types of new blood we are going to need. Check your blood types, and then your pulse. If you have a pulse and have the interest, you may be just what we need. Call the KABVI office at 785-235-8990, or 1-800-799-1499.
By Nancy Johnson, Editor
KABVI was formed because blind people believed they could work and contribute to society. They helped develop a state program with the goal of making this happen. That program lasted roughly 70 years. And it has gone away. It has been a good program and we have appreciated it. We have needed it and still need support for training of persons with blindness and low vision, but it is time we blind and visually impaired folks exert the independence we have been working so hard for.
With help from rehabilitation teachers, many of us achieved the independence and employment KABVI’s founders hoped for. We have had the support of tax payers for these years. We must begin to do what we can for ourselves and others. We can share what we have learned with those who need it. So …
KABVI has a plan to provide some (admittedly minimal) prevocational rehabilitation teaching services to the people of Kansas. People who lose most or all of their eye sight as adults frequently believe they will not be able to live independently or work again. When they learn basic techniques to live with the loss of vision, they may discover that they can live independently with little or no help and go back to work. At that point, they may be qualified for Vocational Rehabilitation Services. KABVI’s program is intended to fill some of the gaps left by the dismantling of the state’s rehabilitation teaching program and to prepare individuals for vocational rehabilitation. It has no age restrictions.
We must make our program as inexpensive and cost-effective as we can. Unfortunately, we cannot afford to provide services at no cost. Think about this for the people in your area. Nancy Johnson was a rehabilitation teacher with Kansas Services for the Blind and Visually Impaired for 29 years. During her career she spent twenty years in the field and nine years at the rehabilitation center. While at the center she worked four years in the independent living skills training program and five years with Kan-SAIL (the older blind program). Nancy has entered graduate training to earn a master’s degree in education with emphasis on adult education and training with a goal of designing a training program that will help KABVI develop a new type of program for Kansans who are blind or severely visually impaired.
She is donating her time to KABVI until a better solution can be achieved. Nancy is at the KABVI office from 10:00 until 3:00 most Tuesdays and Thursdays. When people need help in the Topeka area, they are asked to come to the office. The young man who works with us drives for Ann and Michael Byington and Nancy Johnson. Scheduling conflicts occur. Individuals can use the local fixed route buses as well as the Lift service to get to the KABVI office, which is located in the Casson Building, 603 Southwest Topeka, #304. Please call in advance to arrange an appointment. An elevator is available.
The situation is more difficult for those outside of Topeka. Nancy will occasionally set up group training in the further-removed areas. Whenever possible, an element of this training will be peer support. Someone in your community needs to locate a facility for the training. You need to share among the group the cost of board and room for Nancy and two little dogs. It works well for blind or visually impaired participants to bring sighted assistance – NOT to do things for them, but to have someone who can later remind them of the techniques discussed and to apply adaptations in the home. When the training is finished, the sighted friend will have heard the same information the participant heard and will know better how to help. The peer support person will also be available to answer questions. Remember … the goal of this program is to teach individuals techniques that will help them retain or increase independence and, whenever possible, to prepare them to move on to vocational goals. How far Nancy needs to travel and how long she needs to stay will determine the cost to your group. When you plan a local training program, investigate the possibility of including or scheduling training for caregivers in the area who work with the independent living center, Department on Aging, or community health agency.
The training activity can include information about any or all areas of living independently as a visually impaired or blind citizen. By including time to share experiences, participants can develop coping techniques and strategize about how to deal with problems they might encounter in the community. The cost of supplies should be minimal unless practical applications of cooking techniques are desired. A charge for supplies will be included.
Some individuals may be isolated – the only blind or severely visually impaired person in the area. KABVI wishes the organization could offer to come to each of you. Unfortunately, the cost would be prohibitive. You might mention to your local agencies that KABVI’s program is available and provide them with the organization’s contact information. You can also contact resources listed at the end of this issue of KABVI NEWS. Many more exist. These are some that people have found to be particularly helpful. If you’ve used a resource that worked really well for you and is not included, please let us know about it so it can be added to the list.
Outstanding Individuals Sought
By Kathy Dawson, Awards Committee Chair
It’s Time to Put Your Thinking Cap on Again! Now is the time for all KABVI members to think about the people we know who demonstrate that special spark that makes them stand out among their peers. We’re again looking for two outstanding individuals to be recognized state-wide with the Eleanor A. Wilson and Extra Step awards. Recipients will be honored at the 2010 annual meeting and convention
The Extra Step Award is presented to a visually impaired individual for unique courage and successful personal rehabilitation. The nominee shall have demonstrated initiative and ingenuity, in meeting the unique challenges in life, and shall have contributed to society in an outstanding manner. The nominee shall be a Kansas resident, at least legally blind and shall be selected without regard for affiliation with any organization of or for the blind.
The Eleanor A. Wilson Award is presented to a sighted or visually impaired individual who demonstrates outstanding service to the visually impaired and blind in Kansas. The nominee should, through personal characteristics and activities, promote public acceptance and understanding of visually impaired and blind persons as capable and productive members of the community. The Eleanor A. Wilson Award emphasizes contributions beyond those achieved through the nominee’s regular employment. The nominee shall be a Kansas resident and shall be selected without regard for affiliation with any organization of or for the blind.
Nominees for both the Extra Step and Eleanor A. Wilson awards shall be invited to attend the annual meeting and convention in October. Travel, registration, and one night’s hotel expense may be covered for award winners, if requested and when funds are available. The award ceremonies are an expression of KABVI’s genuine appreciation for what these extraordinary individuals have contributed for the benefit of visually impaired people in Kansas.
No members of the Awards Committee or their immediate families are eligible to receive an award. Members of the KABVI Board of Directors may be nominated. Please send nominations to: KABVI, 603 SW Topeka Blvd, Suite 304, Topeka, Kansas 66603 by July 16, 2010.
Getting the Most from a
Finger Stick
Suggestions from ACBDA Members
Compiled and Edited by Bill Lewis
One of the most frustrating problems for a blind person with diabetes is trying
to obtain a glucose reading at various times of the day. Blood circulation
varies between the morning, afternoon, and evening, and changing hand and body
temperatures influence the amount of blood just under the skin.
To prepare for a glucose test, we must select a clean testing location,
prick the spot, locate the blood drop with the test strip, listen for the
tell-tale beep, and await the readout.
The toughness of the skin, test location on the body, skin cleanliness,
adequacy of the blood sample, and the
cleanliness and age of the test strip can skew the score. But in practice, most
of us simply prepare ourselves, stick the finger, look around for the blood
sample, then take a reading and skip the details. Here are some suggestions to
keep in mind.
1. Dry or thickened skin on the fingers may distort the glucose numbers, so
try using a good quality hand lotion to help keep your hands and fingers soft.
2. To avoid scarring, don't use just one place on one finger day after
day. Use each finger in turn on both hands to spread the experience more
evenly.
3. Alternative locations for the finger pads, such as the
sides of the finger, a location on the hand, arm, torso, or leg may sometimes
serve as alternative test locations. Adjusted scoring parameters are necessary
when using alternative sites.
4. To increase blood flow in cold hands, soak your hands in very warm water
for a few minutes to stimulate blood flow in the capillaries just beneath the
skin. When done consistently, this should increase the chances for a successful
glucose test.
5. "Milk" your finger by squeezing the finger, then sliding the gripping
fingers from the base of the test finger down to the tip, to massage the blood
toward the fingertip.
6. Sometimes letting your arm and hand dangle straight down from your
shoulder for a minute or two will improve blood flow; and shaking your hands
vigorously at the same time can help, too.
7. Usually the blood flow in our hands varies considerably throughout the
day. Obtaining a measurable drop in the morning may be difficult but very easy
in the afternoon, when you're up and around. Remember the time of day you get
the best and worst results for your efforts, then use the above suggestions as a
counterbalance.
8. One of the most frequently expressed frustrations from persons who are
diabetic and also blind is the problem of finding the blood with the test
strip.
Trial run: With the lancet un-cocked, touch the lancet to the
chosen spot on the selected finger. Use the thumb on that hand to reach across
the palm of the hand and touch the plastic case of the lancet device. Press the
thumb to that spot on the finger. The thumb will be used as the starting
reference point to locate the blood drop.
With the side of the lancet case slightly touching the
thumb tip, prick the finger. Lay the lancet aside. Pick up the meter with the
inserted strip. Now bring the meter and strip toward the thumb tip. Let the
flat side of the strip barely touch the thumb tip. With this as the starting
place, slowly slide the strip away from the thumb tip. The blood drop should be
only about one-half inch away from the thumb tip. If you don't find it the
first time, move back to the thump tip and slowly move the strip out again. As
soon as the sensor notch in the strip contacts the blood, it will beep. Halt
the movement immediately and listen for the readout. It may take a number of
dry runs to calculate the needle location in reference to the thumb tip. For
other reference location, you can use the thumb tip, a ring, a string around the
finger, an adhesive dot, or other possibilities.
Once you have learned to locate the blood drop, the remaining problem will
be that of guessing how long it will take for the blood sample drop to show up.
Diabetics in Action News is the quarterly publication of ACB Diabetics in Action, a Special Interest Affiliate of the American Council of the Blind.
Report from the Board of Directors
By Nancy Johnson, Recording Secretary
The meeting of the board of directors of the Kansas Association for the Blind and Visually Impaired (KABVI) was convened by president Ann Byington at 10:00 in the conference room at Envision, 610 North Main Street, in Wichita. A tour of the facility was provided by Danielle McIntyre of the Low Vision Rehabilitation Center. The meeting was held in this facility because directors are interested in using it for the annual membership meeting and convention.
The business meeting followed the tour. Present were eight directors and no guests.
Nancy reported that, at the request of the job placement specialist, she spent a week in Hays reviewing basic mobility techniques with a client. The individual’s appliances were tactually marked and his canned goods were organized. Nancy will provide magnetic labels after her return to Topeka. While work was done with the individual, Nancy also trained two individuals in techniques to work with him. One of these was given information about the kinds of things the individual needs to learn when going for an interview and on the job. Routes to four destinations within walking distance of the individual’s home were reviewed. He demonstrated that he could safely travel to each of them. The plan is for the assistants to carry on what was begun. Each now has some rudimentary knowledge of mobility and knows how to adapt an individual’s home.
Kabvi has obtained the Braille library that was housed at the Rehabilitation Center for the Blind (RCB). It was necessary for the organization to rent more space to house it. Had that not been done, the library might have gone to another state. As it is, the materials are housed in Topeka and can be used by anyone who happens to be in town and wishes to use them. They are still being organized and catalogued. A check-out system needs to be developed. Grant requests will be written to pay for the additional space. Brandon Bruton, KABVI’s office assistant, is commended for his work in unpacking and shelving the books. A computer will be placed in the library to handle record-keeping. . Rent and insurance for the library have been paid for the remainder of this year. Donations from chapters or support groups for support of the library will be accepted with gratitude.
Office operations in June will be handled primarily by Brandon, Nancy, and Ann. Brandon is learning to whom he should direct calls. His hours are Monday through Friday from 9:00 until 2:00. Nancy will continue to be there Tuesdays and Thursdays from 10:00 to 3:00. Ann’s hours are not specified.
The grant that pays for Brandon’s help is a training grant, to help him develop work skills. Its duration is indeterminate. Other arrangements need to be considered for the future.
The governor provided an advisory committee for Kansas Services for the Blind and Visually Impaired (KSBVI), though it does not have the same strength as the Commission for the Deaf and Hard of Hearing. It will, however, be required to report to the State Rehabilitation Council and will, therefore, have a bit more strength than the previous advisory committee had. Ann Byington and Marilyn Lind will represent KABVI on the advisory committee.
Thirty-five people attended Vision Awareness Day on April 22. This was a joint venture with Freedom Scientific, NanoPac, and KABVI. The latest updates to JAWS were demonstrated and the new Pearl scanner was shown. The newest low-vision equipment was also demonstrated. A presentation was provided by a speaker from the Seeing Eye.
Ann reported on her trip to Washington, D.C. for the American Council of the Blind (ACB) presidents’ meeting and legislative seminar. A number of topics were discussed including the fate of schools for the blind, streaming of conventions on ACB radio, legislative law, pedestrian safety, readers’ rights, quiet cars, and telecommunications. This is an interesting and fast-paced meeting. Visits to legislators are scheduled.
Paul Berscheidt has become a dealer for Independent Living Aids, a company that sells specialized products for persons with blindness or low vision. No additional information was provided.
The technology recycling project is slowly moving forward. Additional volunteer help is being sought. Nancy offered to develop and maintain waiting lists for computers and other equipment. Equipment needs to be checked and inventoried.
Not a great deal has been done legislatively. A bill is awaiting passage which will include language that will allow blind and deaf individuals to work as day care providers.
Bob reported three applications for scholarships have been received. Permission had been given to provide only two this year. However, because of the grant from the American Eagle Outfitters Foundation and the Home Readers donation, three could be given, including the Esther V. Taylor scholarship. Consensus was that the committee should be given the latitude to present three scholarships if all applicants are deemed worthy.
Mikel M reported KABVI has seen a small increase in membership. Twenty more names were sent to ACB this year. Bob reported he has received ten since that time. Some of these are people who had been members and had dropped out for a while. “Welcome back!” to these members.
Youth Activities Day in Topeka will be August 7 at the Topeka YWCA, 225 SW Twelfth Street. More information will be sent to interested persons upon request. Please contact the KABVI office for additional information or to register.
The third annual “Eyes Wide Open” golf tournament will be held Thursday, August 19. For more information, please contact the KABVI office.
Convention week end is October 8-10. It will be held at the Envision facility at 610 N. Main Street. Plans have not been solidified. We hope to have Rebecca Bridges, National Association of Blind Students, as our primary speaker. Mailings will be sent out in the summer. Final details will appear in the next KABVI NEWS.
By Nancy Johnson, chair, youth activities committee
The youth activities program is progressing. The first activity is planned for August 7, 2010, at the Topeka YWCA, 225 SW Twelfth St. Final details are forthcoming. Activities will be held for youth and parents separately.
A panel of persons, some congenitally severely visually impaired and some congenitally blind, will discuss a variety of topics about growing up and becoming successful blind adults. Discussion time for each topic will be included. Input from parents regarding what they might find most helpful from KABVI will be requested.
The youth track will include some discussion time with youth but will also include some recreational activities. Volunteers are planned to assist the young people as needed. Youth activities will be dependent upon the number and ages of young people who attend.
As plans are finalized, they will be shared with the teachers of the visually impaired across Kansas, Kansas Youth Empowerment Academy, and Families Together. Registration deadline is July 23. To learn more as the activity is finalized and to register, contact KABVI by phoning (785) 235-8990 (toll free in Kansas, 1-800-799-1499) email kabvi@att.net, and check the web site at Kabvi.com.
This activity is sponsored through a grant from the American Eagle Outfitters Foundation. There is no cost to participants. KABVI plans to replicate this activity in areas across the state.
By Clara Kilbourn –
The Hutchinson News - ckilbourn@hutchnews.com
Submitted by Joanne Hackerott
Residents attest to the blessings of both donating, receiving needed organs.
Kathy Green insists their stories aren't about her.
But Gordon Ehling, of rural Abbyville, and Georgia Henry, of Sterling, know otherwise.
Ehling, 86, credits Green, an advocate for cornea and organ transplants, with seeing him through near-blindness to having his sight restored to 20/20 vision. Henry, 56, embraces Green for giving her new life with the gift of a kidney.
With March designated as cornea transplant month and April as organ donor month, the two transplant recipients shared details of their lives before and after receiving their transplants.
Ehling, a patient of Hutchinson ophthalmologist Francis Depenbusch, met Green, an assistant to the doctor, 15 years ago. Because of corneal disease, Ehling, then age 70 and nearly blind, had been forced to give up his farming operation and driving.
"It was like he was looking through waxed paper," Green said, in describing Ehling's corneal-diseased eyes.
Serving in the role of patient advocate because she knew first-hand of the success of cornea transplants, she encouraged Ehling to undergo the surgery that would restore his vision.
"He would call me with questions and I could reassure him in terms he could understand, ease the anxieties," Green said.
She told Ehling that the healing and recovery would take some time and his vision would be foggy for a while.
After successful surgical removal of the diseased corneas in two separate surgeries, and transplanted donor corneas in both eyes with no sign of rejection, Ehling returned to his farm work and began driving again. Best of all, he can see the faces of his three grandchildren, seven great-grandchildren and Carol, his wife of 59 years.
"I've had 15 years of good vision," Ehling said. "It's so good I can't believe it. The Lord has blessed me."
Henry's kidney transplant ties her even closer to Green.
The two met when Henry, a diabetic and a Depenbusch patient, began having trouble with her eyes.
With time, Henry's eye problems brought on more ophthalmologist appointments and the two "kind of got along," she said.
"She called me with questions I would be able to explain, told me she trusted me," Green said. "I thought it was a shame as young as she was and a teacher that nobody could help her."
As Henry and Green became better acquainted, they learned they had children about the same age. They liked listening to the same kind of music. That led to road trips for concerts and family visits. Over the past 15 years, they've become close friends.
Henry's type 1diabetes had come on unexpectedly 30 years earlier. For three decades, she controlled it with medication. But three years ago, her condition worsened because of the poison buildup in her body and she became lethargic and easily fatigued, a sign of kidney failure.
Rather than begin dialysis, Henry opted to go for a kidney transplant. Her sister volunteered as a living donor.
When Green learned about the proposed kidney transplant, she urged Henry to find a second donor.
"I told her she better have a backup," Green said.
More than insisting on finding another potential donor, she volunteered that she'd be that person.
"She needed one kidney and I had two," Green said.
When the transplant team eliminated Henry's sister as a donor because of a health situation, Green was ready.
She was back at work after five weeks and up on water skis four months after the June 2008 surgery. Henry returned to her classroom in August. Being a living donor doesn't slow you down, Green said.
What Green gave her is the donation of life itself, Henry said
"People can't understand it," she said. "Her outreach to support the transplant system is truly amazing."
Her friend's diabetes will still bother the healthy kidney, but it has bought her some time, Green said.
Always the jokester, Henry said the only thing she can't do now is play the piano.
"But I couldn't play it before either," she said, adding a happy laugh.
Compiled by Nancy Johnson
Editor’s Comment: I’ve been putting out KABVI NEWS for several years now and have rarely heard from anyone though I’ve encouraged people to write. Even if you’re not an accomplished writer, let us hear from you. A part of my job as editor is to fix things like spelling and grammar for you. Your board and officers need to know what you’re thinking and so do other readers. Following are some comments I’ve received. Your full name doesn’t have to appear, though we do need to know whose comments we’re printing. Thank you to the authors of the following.
From Alfonso Aronowitz: I begin from the premise that blind Kansans and our families are as deserving as residents of any other state of high quality orientation and adjustment services for the blind.
For years, those who have offered judgment about the activity of the RCBVI have concentrated on the numbers; there is agreement that the numbers are unfortunate. The ratio of clients who have gone to work to those who began training to prepare for work is not nearly good enough.
I submit that no matter how uplifting and focused the orientation training clients may receive, the portion of those who find work is unlikely to improve substantially unless the job placement component of the program is changed drastically. Currently, job placement specialists proceed with very little training. As a result, regardless of the acumen and motives they may bring to their work, their incentive is to try to place clients as sighted people who don’t see well.
The lack of thoroughly trained placement specialists is the most blatant, but certainly not the only, example of seriously flawed policy within this program.
Blind Kansans share ability and ambition in equal measure with our peers in other states. The closure of RCBVI is primarily caused by both bad policy and a failure of SRS leadership.
The conduct and rhetoric of some of those near the point of policy formation for this program calls to mind an epigram by a British poet who wrote: “The good old rule sufficeth them; the simple plan that they should take who have the power and they should keep who can.”
From TAH: After reading the Spring KABVI newsletter, I just needed to try to respond in some way to what is (and has been) going on. As a citizen of Kansas, I am ashamed of the shabby way that SRS treated (Nancy). That sort of treatment has real consequences, none of them good … it is a shameful waste ... it's Kansas' loss.
These are pretty chaotic times. And you know what they say about chaotic times. In chaos there is great opportunity. Years ago I had a talk with (a) supervisor at the Independent Living center about the need to provide choice to blind and visually impaired people. I tried to make the case that there was a need for more flexibility in training and the need for some sort of fee for service instruction. I was met with rather dismissive resistance. There seemed to be a real fear of "duplicating services" and a one-size-fits-all view of who the blind population was.
This chaos may give you creative people just the chance you need to make a real difference."
“Alone we can do so little; together we can do so much.” – Helen Keller
Compiled by Nancy Johnson
Editor’s Note: This section is provided for information only and does not represent endorsement or recommendation of the products and services discussed.
Risks for Macular Degeneration: According to the American Academy of Ophthalmology, if you have at least two of these top-five risk factors, you should have a thorough eye examination by an ophthalmologist or other medical eye specialist and learn what you can do to reduce your risks: smoking; obesity; over age 60; hypertension; or, family history of macular degeneration. You can learn more about these risks by reading the American Foundation for the Blind’s Macular Degeneration Guide, possible treatments, questions to ask your doctor, tips for living with macular degeneration and low vision, and how families cope with visual impairment.
Blind students from the Ohio State School for the Blind marched in the Parade of Roses New Years Day, 2010. Each of the 32 band members was paired with a sighted guide who marched with them. Guides placed a hand on the marcher’s shoulder or held onto loops inside the participant’s uniform. This was the first time in the parade’s 121 year history that a band of blind marchers participated.
Oral Hull Foundation for the Blind announces its (28th annual) 2010 summer camps for blind and low vision adults. Adult Adventure Camp 1, July 24-30.
Adult Adventure Camp 2, August 1-7. Alumni and Friends, August 9-15. Modified Adventure Camp, August 17-23.
Where? Near Portland, Oregon. In addition to traditional camping programs, participants may choose to enjoy such activities as skydiving, bungee jumping, white-water rafting, rock climbing, hiking, swimming, and more. Fees range from $375 to $400 (extra fee for skydiving).
For information contact Jeff Lann, Executive Director, P.O. Box 157, Sandy, OR 97055, phone 503-668-6195, email oralhull@teleport.com, or visit the web site, www.oralhull.org.
Prodigy® has received FDA approval for the Prodigy® Count-A-Dose®, which will be ready for release in early April. This medical device allows a blind or vision-impaired person with diabetes to fill an insulin syringe independently, without assistance. Insulin therapy will cost a lot less with Count-A-Dose® versus using insulin pens and prefilled reservoirs! In early April, the Count-A-Dose® can be purchased at specialty stores serving the blind and vision impaired. We will have the Prodigy® Talking Insulin Pump later this year. Prodigy® is the only manufacturer in the diabetes industry to respond to the challenge of producing a fully accessible talking glucose meter system, the Prodigy Voice™, which offers a blind or low vision user total independence. Prodigy’s goal is to serve blind patients with diabetes; so much of their profit goes back into research & development. This year, Prodigy® plans to release at lease three new audible products to serve the blind and vision impaired community. Prodigy® has asked for help so that these products become available through retail chain stores and are covered by private insurance carriers as well as Medicare/Medicaid. Their goal is for Team Prodigy® to get 100,000 blind and vision-impaired people to sign up and work together so that our voice cannot be ignored. Accessibility isn’t just for those with sight. Beginning March 1, 2010 Prodigy® will have their website www.prodigymeter.com set up so you can enter your name and your voice will be heard. For additional information contact Prodigy Diabetes Care, LLC, 9300 Harris Corners Parkway, Suite 450 Charlotte, NC 28269. Contact: Jerry Munden – 704-285-6454 jerrym@prodigymeter.com
Diabetic retinopathy is an eye condition that results from the damaging effect of diabetes on the circulatory system of the retina. The longer someone has had diabetes, the greater the person's likelihood of developing diabetic retinopathy. Changes in the tiny blood vessels of the retina can lead to vision loss. People with diabetes should have routine eye examinations so that diabetes-related problems can be diagnosed and treated as soon as possible. Maintaining strict control of blood sugar levels helps to prevent diabetic retinopathy. Surgical and laser treatments can help many people affected with this condition. Suggested resources: Visual Impairment and Diabetic Retinopathy www.nei.nih.gov/health/diabetic/retinopathy.asp
Sewing A Straight Seam: Place the fabric pieces with right sides together and match the raw edges. Pin the two pieces of fabric together to hold them in place. Cut a piece of electrical tape and adhere it along the raw edge of the fabric on one side. Because the tape is plastic, it feels smooth next to the rough texture of the fabric. This creates a consistent and tactile guide along which to sew. The tape can be reused until it loses its adhesive. Electrical tape comes in a variety of colors so, for people with some vision, color that contrasts with the fabric may be useful. The combination of contrast and touch can make this task even easier. You can find colored electrical tape in local hardware stores. For tips on mending clothes and other household tasks, read AFB Senior Site's article on Keeping House. Or check out Hadley School's course, Independent Living for the Visually Impaired.
Victor Reader Stream CD Edition: HumanWare is pleased to announce the Victor Reader Stream CD Edition, which combines the VR Stream and a special CD player accessory. Stream CD Edition is perfect for people who do not have a personal computer. It is the easiest way to transfer a DAISY book on CD onto one single, portable audio playback device without the use of a computer. Some people who receive DAISY CD books in the mail from their library say they would like to be able to transfer their CD book to the Stream because the Stream would be an ideal player when they are travelling or on the go, but they do not have or want to use a computer.
The Stream CD edition is Ideal for readers who listen to DAISY CD books and do not use a computer. It is easy to use. Just attach the CD drive to the Stream, load the CD book, and press a single button to copy it to the Stream. A short Getting Started audio book explains the steps and plays automatically when you power on the Stream CD Edition. The Stream CD Edition has the full feature set of the standard Stream so if users want to go beyond just listening to their DAISY CD books they can enjoy other types of books and music and even use the voice recorder. All documentation and tutorials are supplied on the SD card. You get one VR Stream with all the usual accessories: Rechargeable battery & charger; ear buds; USB cables; documentation CD; and a 2 GB SD card; and, one VR Stream CD player Accessory especially designed to be used with the Stream. The CD player accessory is also available for purchase by existing Stream users who may not have a computer and are relying on others to transfer their CD DAISY books. Only the CD player supplied by HumanWare should be used as other CD drives have been found not to be electrically compatible and can damage the Stream. For more information visit http://www.humanware.com/streamcd. HumanWare provides products to people who are blind or have low vision and students with learning disabilities. HumanWare offers BrailleNote, the Victor Reader product line of digital audio book players; the SmartView family of handheld and desktop electronic magnifiers; and myReader2, HumanWare's unique "auto-reader."
For more information about these or other HumanWare products: Call toll free 1-800-722-3393 or (925) 680-7100; Email: us.info@humanware.com.
Tactile World: Computers have become such an integral part of life, in the rich world at least, that even social networking is done online. The blind, however, are often excluded from such interactions. Now a system has been developed to make it easier for blind people to navigate the internet, use word-processing software and even trace the shapes of graphs and charts. Its inventors hope it will enable more blind people to work in offices.
The system developed by staff at Tactile World, an Israeli company, uses a device that looks similar to a conventional computer mouse. On its top it has two pads, each with 16 pins arranged in a four-by-four array. Software supplied with the mouse translates text displayed on the screen into Braille.
In traditional Braille, numbers and letters are represented by raised bumps in the paper of the page being read. The pins on the mouse take the role of these bumps. As the cursor controlled by the mouse is moved across the screen, the pins rise and fall to represent the text across which they are moving. One pad represents the character under the cursor, the other gives the reader information about what is coming next, such as whether it is a letter or the end of the word. This advance information makes interpretation easier. As the user reads the text, the system also announces the presence of links to other websites. And the user can opt, if he wishes, to have the computer read the whole text out loud.
The mouse's software has an "anchor" feature, to hold onto the line of text that is being read. Alternatively, a user can click a button on the mouse and the text will scroll along and run under his fingers without him having to move the device.
When he encounters a graph, map or other such figure, the pins rise when the mouse is on a line. The number of pins raised reflects the thickness of the line. If he strays from the line, the pins fall. He is thus able to trace, say, the curve of a graph or the border of a country. More complex diagrams can also be interpreted. Dark areas of maps, for example, can be represented by raising all the pins, while light areas are places where all the pins are dropped.
Not only is the tactile
mouse more advanced than existing technologies for blind people, it is also
cheaper than existing Braille readers, which plug into a computer and typically
display 40 Braille characters at a time. The tactile mouse costs $695, rather
than $3,500-8,000 for a Braille reader.
Compiled by Nancy Johnson, Editor
Northwest Kansas Association for the Visually Impaired (NKAVI) learned in January that James Buchanan was President of the United States when Kansas became a state. They heard about Crying Nellie’s Escort Service in February. This service was provided by a school teacher who drove from her home in Hays to the local military base daily and took young, frightened brides to visit their husbands. March’s presenter was from the local recreation center. The group learned of upcoming trips to several interesting places near Hays. In April they had a representative from Envision who told them about that organization’s services. NKAVI’s annual All American Breakfast to support their scholarship fund and the seventh annual vision fair will occur on May 2. On May 8, several NKAVI volunteers will provide a booth for the Senior Celebration at the mall. The Vision Fair date is September 25. It will be held at the Sternberg Museum from 9:00 to 4:00.
Topeka Association for the Blind and Visually Impaired (TABVI) meeting was canceled in January because of nasty weather. Participants heard about services of the local fire department in February. In March, Ann and Michael Byington informed the group about activities in which they took part at the annual Presidents meeting and legislative seminar of the American Council of the Blind. In April they heard about haunted houses in Topeka.
Southwest Kansas Association for the Visually Impaired (SKAVI) learned about Louis Braille in January and saw such items as a slate and stylus and a Braille book. They heard an update on low vision in February. The 2010 census was the topic in March.
Western Kansas Low Vision Support Group continues to meet in conjunction with the monthly International Macular Degeneration Support internet broadcasts.
Central Kansas Association for the Blind and Visually Impaired (CKAVI) continues to meet monthly at the convent in Great Bend. The group celebrated the New Year with a potluck meal. They were informed about changes being made in the Talking Books program. A DR-200 ezReader that can be attached to the TV screen will be purchased for trial.
Mildred M. Meck, 91, of GIRARD, died February 13, 2010 at her residence. She was born August 28, 1918 in Girard, the daughter of Gerald and Gertrude Ellen (Crossland) Mills. She attended schools at Girard and Kansas City, KS, graduating from Girard High School in 1938. She married Leo Louis Meck on June 7, 1942. He preceded her in death on January 26, 1957. Mildred worked in Pittsburg teaching Braille and proof reading, in Topeka as a cafeteria manager in the state offices from 1973 to 1980, then in Wichita as cafeteria manager at the Wichita Clinic from 1980 to 1985. She retired in 1985 and moved back to Girard. Mildred was a member of the First Christian Church of Girard, American Business Women, Kansas Association for the Blind and Visually Impaired, American Council for the Blind, Girard Lions Club, and the Girard PTA and was a past president. She served as a 4-H leader, teaching girls to knit and as a Girl Scout Assistant Leader. In her retirement she worked at Envision in Pittsburg for a few years, served in the Hospital Auxiliary as a pink lady at the Girard Hospital, and was a volunteer at the Safe House in Pittsburg. She participated in a study for the blind and visually impaired at Harvard Medical School from 1993 to 1996. Mildred never let her blindness get in the way of or stop her from helping others or accomplishing the things she wanted to do. The way she lived life and her attitude were an inspiration to all. Survivors include sons Nicholas Meck and Judie Cuprisin of Chicago, Illinois; Richard Meck and Vickie of Tecumseh, Kansas; daughters Jerri Dundee and Mike, of Manteca, California, Wilda Pentola of Farlington, Kansas and Peggy Marshall and Jerry of Girard; 14 grandchildren; and 19 great-grandchildren. She was preceded in death by two brothers, a sister, and a grandson. Memorials are suggested to the Mildred Meck Education Scholarship Fund, Girard Medical Center Foundation, or the First Christian Church of Girard and may be taken or mailed to the Smith-Carson-Wall Funeral Home at 518 W. St. John Ave., P.O. Box 258, Girard, KS 66743. Published in Wichita Eagle, February 18, 2010
Deanna Sue Howard,
72, of Manhattan, died April 13, 2010, at The Good Shepherd Hospice House in
Manhattan. She was born October 20, 1927, in Columbus, Ohio, the daughter of J.
Robert and Lillian J. (Howard) Smith, and had been a Manhattan resident >for 35
years. Mrs. Howard was a caregiver. Deanna was a member of Seven Dolors
Catholic Church, Welcome Wagon, Visually Impaired Club and the Book Club. She
was married to Herman J. Howard at St. Paul’s Catholic Church in Athens, Ohio,
on December 27, 1955. He preceded her in death on January 11, 2005. She was also
preceded in death by her parents. Survivors include three children: Teresa L.
Parlor and her husband Louis, Jr. of Charleston, SC, Phillip J. Howard and his
wife Laura of >Indianapolis, IN, and Charles W. Howard and his wife Deborah of
Salina, KS; and seven grandchildren and eight great-grandchildren. Memorial
contributions may be made to either Talking Books or The Good Shepherd Hospice
House. Contributions may be left in care of the
Yorgensen-Meloan-Londeen Funeral Home, 1616 Poyntz Avenue, Manhattan, KS 66502.
At age 69, Deanna began taking violin lessons and French lessons. She served on the state Talking Book Advisory Council for many years. She was a strong advocate for the program and pursued her interest in reading with a passion. As a long-time member of the Manhattan VIP (Visually Impaired Persons) support group, she encouraged others and led by example.
Resources for Persons Who Are Blind or Visually Impaired
Compiled by Nancy Johnson
Following is a list of resources you may contact for information and help. I’ve tried to provide up-to-date information. Such lists are difficult to maintain because organizations change from time to time. I apologize for any changes I may have missed.
Please be aware that many, many companies and organizations provide products and services. This is by no means a complete list. Room is not available for all of them.
Reading Services
Audio-Reader – 800 772 8898 - 785 864 4053 – 1120 W 11th St. Box 847, Lawrence, KS 66044
Dodge City Talking Books – 257 6533
Emporia Talking Books (State) Library – 800 362 0699 – 1200 Commercial St. Emporia, KS 66801
Great Bend Talking Books – 800 362 2642
Manhattan Talking Books – 800 432 2796
Norton Talking Books – 800 432 2858
Topeka Talking Books – 580 4532
Wichita Talking Books – 800 367 2869
Topeka & Shawnee County Public Library – 580 4400 – Toll free 800 432 2925
Library web site – kslib.info/talking books
Music Librarian, Library of Congress – 202 707 9246
Aurora Ministries – 941 748 3031 – P.O. Box 621, Bradenton, FL 34206 –auroraministries.org – Bible and Bible studies on tape, available in 60 languages, upon request.
Audio Editions – 800 231 4261 – audioeditions.com – Online audio bookstore with over 19,000 titles
Services for Independent Living
Free Directory Assistance – 800 466 4411 – 800 GOOG 411
Ears4eyes – Independent Living lessons on tape – 800 843 6816 – Teaches you how to adapt your home and techniques for daily living so you can continue to do the things you need and want to do.
Hadley School for the Blind – Hadley-school.org – 800 526 9909 - 700 Elm St. Winnetka, IL 66093-0209
Kansas Assistive Technology Cooperative (KATCO) – 866 465 2826 or 620 341 9002 – Assistance in obtaining assistive technology with low cost loans
National Do Not Call List – 888 382 1222
Products
Independent Living Aids – 800 537 2118 – independentliving.com
MaxiAids - 800 522 66294 – maxiaids.com
LS&S – 800 468 4789 –
IRTI – 800 322 4784
Envision Every Day Store – 316 440 1680 – 888 311 2299
Nagel’s Visual Aid Systems – 800 874 8835 or 816 257 7781 – nagelsvisualaids.com – P.O. Box 1906, Independence, MO 64055 -Electronic visual aids systems. Sometimes has used equipment.
OCCK (Occupational Center of Central Kansas , Salina) Assistive Technology loan program – 785 827 9383
TAP – Telecommunication Access Program – 785 234 0200 (TTY 785 234 0207) – kansastap.org – 4848 SW 21st St. Suite 201, Topeka, Kansas 66614 – Specialized telephone equipment to make it possible for people to use basic in-home telephone services.
Associated Services for the Blind – 215 627 0200 – 919 Walnut St. Philadelphia, PA 19107 – Braille and recorded items – asb.org, May also have low interest technology loans.
Helpful Web Sites:
Kabvi.com – Kansas Association for the Blind and Visually Impaired
Acb.org – American Council of the Blind
Afb.org – American Foundation for the Blind
Aph.org – American Printing House for the Blind
Lighthouse.org/about/education/newsletters.htm
ss.gov/enews – Social Security E-news (free monthly newsletter)
Disabilityresources.org
Legislation
Public Accommodation Law – 750.502c Sec. 502c
White Cane Laws – 752.52 Sec. 2 and 752.53 Sec. 3
For Computer Users
If you cannot see to read your computer screen with reasonable ease, go to www.satogo.com and follow the audible prompts. System Access is a type of assistive technology – a text-to-speech screen-reading program that you can use to read your computer’s screen and give your computer necessary commands by using the keyboard. (It is not a speech-to-text program.) A tutorial is available when you begin the program.
questions or need additional information:
Nancy Johnson, Rehabilitation Specialist
Kansas Association for the Blind and Visually Impaired
603 SW Topeka Blvd, Suite 304
Topeka, KS 66603
Call (785) 235-8990 or toll free in Kansas 1-800-799-1499
2010 KABVI Membership Application
____ Enclosed is $10.00 for my 2010 KABVI dues.
___ Enclosed is $250 for my Life Membership.
NAME:__________________________________
ADDRESS:_______________________________
CITY_____________________STATE:_________
ZIP:_________TELEPHONE:_____-___________
E-MAIL ADDRESS:
_________________________________
Are you:
_____Legally blind _____Visually impaired
_____Deaf-blind _____Sighted
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.