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Spring 99 Table of Contents
Versión Español de este artículo (Spanish Version)
By Lars Anderson, Vice President NAPVI, Vice Chair AVIT and Parent of 10-year-old Kari
who is totally blind
e-mail: email@example.com or phone (972) 952-4958
First, I would like to thank Texas School for the Blind and Visually Impaired (TSBVI) and Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) (TCB) for generously sponsoring my attendance at this year's conference. Without their assistance, I would have been unable to attend. I would also like to say that the American Foundation for the Blind (AFB) had four scholarships, for parents who had never before attended JLTLI,go unclaimed this year. I hope that the many active parents in Texas are able to snap those up in the future.
A little over 5 years ago, my wife LeiLani and I were "typical" parents. When Kari was diagnosed with retinal degeneration, our lives changed forever. We were slapped in the face with the alphabet soup: ARD, IEP, VI, LRE, IDEA, TSBVI, TCB, TEA, O&M, and it took quite a while to get our bearings. Since that time, we have timpaired to stay active - in order to know enough to help Kari directly, and to volunteer time to help `the cause'. We joined the National Association for Parents of the Visually Impaired (NAPVI), which was started in Texas 20 years ago by the way, and I made contacts with the Dallas offices of TCB and AFB. We found both of these to be of great help, and the staff to be very friendly and knowledgeable. Through AFB, I became involved in the Alliance of and for Visually Impaired Texans (AVIT).
From what I have seen and learned in the last 5 years, I want you to know that Texas has a system of support for persons with visual impairments that is nationally outstanding. Certainly there are things that can be improved, and most of these are nationwide problems as well, such as not enough certified teachers of the visually impaired being graduated to serve the national needs, etc. Also, there are pressures from all corners to change the system that we have, and not always in ways that improve services. This year, Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) escaped being combined into a "generic" rehabilitation organization, in large part due to the grassroots support of parents and others who wrote letters, visited congressmen, and personally testified during the open hearings in Austin last fall. I want you to know that the system in Texas is worth defending, and I urge you to do what you can to keep Texas services for the blind and visually impaired the envy of the nation. At a recent meeting at TSBVI regarding Parent/Child programs/services there were three observers from Wisconsin in attendance. Obviously those people felt it was worth their time and money to travel 1000 miles to see how we do things in Texas. (Editor's note: At this time, there are many proposals still being considered by the Texas Legislature that might have an impact on TCB's services.)
The Josephine L Taylor Leadership Institute 1999 was held in Washington, DC on March 5 - 7. It is a forum for exchanging ideas, working on common goals, networking with other professionals in the field, and nurturing future leaders. The keynote speech was given by retired congressman Representative Fred Grandy, who is now CEO of Goodwill Industries. (Before becoming a congressman, he played Gopher in the Love Boat - believe it or not.) Fred's speech was very entertaining and informative, but one key point I want to share is how important it is to focus on the mission, on the goals of the organization - then do what you can to accomplish those goals. This advice is not only useful for nonprofit organizations, but for parents who have a torrent of sometimes conflicting input and concerns when planning on behalf of their children. Focus on the goals, compare your actions to the accomplishment of those goals - and that will be your compass.
Advocating for our children at ARD meetings and advocating for services with our representatives share a common thread; both involve negotiation, and both are less stressful if we know our rights as parents, and the rights of our children. JLTLI-99 had a special session this year on "principled negotiation," in which we were trained in methods of reaching agreement, even when you feel "out-gunned." Some of the main points that were stressed in this training were: "be hard on the issues, but soft on the people," and "try to get to the why behind the what." The first point relates to digging in your heels without creating enemies, always a fine line to walk. The second point relates to the fact that frequently agreement can be reached if you can get to the underlying concerns of the stated positions. The example was given of two people sharing a table at a library who were arguing about whether the window should be open or closed. There appeared to be no compromise possible, until the librarian asked them what their concerns were. The first person said he needed fresh air and the second said his papers would blow off the table if the window were opened. After getting to the `why behind the what', the librarian opened a window across the room and both were satisfied.
If you are not already familiar with the goals of the National Agenda, I urge you to take the time to get acquainted. TSBVI Superintendent, Phil Hatlen, is one of the directors of the national project which aims to improve services and education for children nationwide. Two specific National Agenda goals were specifically addressed this year in the Education Working Group of JLTLI-99. The two goals were 1) ensuring that adequate numbers of certified teachers are produced by programs nationally, and 2) that textbooks for students are produced in accessible formats. I attended the electronic textbook sessions and was not surprised to find out that again, Texas is leading the way. There is much to be accomplished, but the breadth of expertise present in the working group sessions was impressive.
AFB held a reception at JLTLI-99, and the president of AFB, Carl Augusto told me he feels a special affinity for Texas. He made me promise to call him `Carl Bob', to affirm his status as honorary Texan. There were tons of Texans (and ex-Texans) there. I would say that there were probably 20 Texans at JLTLI-99, which again speaks volumes as to Texas's role in this field nationally.
NAPVI held a free parent training session on IDEA after JLTLI closed. Delta Gamma Sorority provided day-care for children of the attendees (thank you Betty Guthrie), and the session was well attended by about 40 people from across the US, including one gentleman from Japan. The presentation was very focused and inspirational, even though the final regulations for the IDEA legislation are not yet released. NAPVI will have more parent training sessions on IDEA in the near future, and definitely some in Texas. (Editor's note: The final IDEA regulations have just been released. TEA provides information about the new IDEA on their website at http://www.tea.state.tx.us/special.ed IDEA99/ .)
NAPVI and the American Council of the Blind are cosponsoring the ACB-99 conference in Los Angeles in July of this year. There will be family events, IDEA training, events for children, and more. For more information contact ACB, or NAPVI at (800) 562-6265. Also, please call NAPVI for general information on our organization.
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