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Summer 2004 Table of Contents
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A Parent's Perspective and Reflections from Capitol Hill: the AFB Josephine L. Taylor Leadership Institute

By Laura Boenig, TAPVI Co-Chair, Portland, TX

Abstract: This article gives a summary of the AFB Josephine L Taylor Leadership Institute, which was held in Washington, DC in March.

Key Words: blind, family, conference, advocacy

I recently had the privilege of being invited to attend the American Foundation for the Blind's Josephine L. Taylor Leadership Institute that was held in Washington DC in March, 2004. It was with gratitude and enthusiasm that I accepted.

I found out that our Washington leaders were misinformed as to what is happening in our nation concerning the special education system. Panel members discussed such things as parents regularly attending initial individual education plan meeting with lawyers in tow and discipline needing to be the same for every child regardless of their disability. One of the panelists stated that special education teams have checklists that are checked off as the child learns a particular skill, and that a three-year Individual Education Plan will help because teams will be forced to look further into the child's future.

After listening to all the presentations, I am now aware that we as parents need to help our nation's leaders understand the parent's point of view. The No Child Left Behind law and Individuals with Disabilities Education Act (IDEA) together will greatly influence whether our visually impaired children get the education they deserve, including appropriate materials in a timely manner. It is critical for parents to have a voice in decision-making. Our leaders are not aware that we struggle every day to have our children receive an appropriate education. They don't know that we give the school months — and sometimes years — to fix problems before resorting to legal action. Nor do they understand that giving a student an individual education plan in the 1st grade and not reevaluating him or her for three years may not identify modifications and skills needed to keep up with his peers. It is our duty as parents to inform them of our experiences and let them know why we feel it is so vital that our child's needs be met. Until we, parents who understand special education, inform them, they will continue to be misguided.

The information that was presented to me spoke volumes on who has the leaders' attention. It is not the parent or those working so hard in classrooms with our children. I believe it is the people running the special education system and the administrators who handle the money. We can help our leaders understand the barriers our children face so that they are not left behind. It will take us working together with other advocates, agencies that serve the visually impaired, and our association memberships to make a difference. One thing that was consistently said was that parents make the most impact on our leaders, by providing personal experiences. We need to write letters to our leaders explaining what we need and why we need it.

You may know that the blindness field is faced with a critical legislative year in 2004. To ensure that children who are blind or have low vision receive comprehensive education services appropriate for their unique needs, the field of blindness will need to continue to be diligent in educating and advocating for appropriate services to school personnel, policy makers, and the general public. Keep up-to-date on public awareness and advocacy activities by joining Choices for Children (CFC). This is an important field-initiated campaign consisting of individuals and organizations representing adult consumers, parents, and students with visual impairments, and professionals who teach and assist them. Go to www.afb.org/idea.asp to find the membership form for Choices for Children or contact CFC cochair, Mary Ann Siller from AFB at siller@afb.net.

Another important resource is the American Foundation for the Blind's Words from Washington. This is a free biweekly electronic legislative newsletter from AFB's Policy, Research and Technology Group. It focuses on the most significant legislative and policy issues of interest to the blindness community currently being addressed in Washington, D.C. Review back issues here and subscribe to Words from Washington via e-mail at wfw-subscribe@topica.com through the advocacy section and more specifically at http://www.afb.org/info_documents.asp?collectionid=3 .

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Last Revision: September 1, 2010