by Lyn Petro
From the Editor: This article is taken from a presentation given at the 2017 convention of the National Federation of the Blind of Kansas. It describes the struggle two parents must endure to see that their daughter gets to learn to read and write. It is moving for what it has to say about the commitment of two fine people to help their child be successful; it is disgusting in what it reveals about some school districts and their total disregard for helping their students become happy, productive, and contributing citizens. This story is about the fight to get a child Braille, but it is also about what our system does to force a parent to become an advocate and sometimes at significant financial cost. As Lyn says, “My biggest passion in life is my children, but Braille literacy is a close second. Most people really don’t understand how little instruction and materials blind and visually impaired students receive. It’s my choice to educate others. I will not let others make the choice about whether or not my child will be able to read, learn, or succeed in life. It will happen for Brooke!” Here is the article:
Thank you for asking me to share our family's journey with you. Our daughter Brooke is a bright and beautiful eleven-year-old who also happens to be legally blind. She is a Braille reader, but does utilize her limited vision. My husband and I feel blessed to have been chosen to be her parents.
While our family has been fortunate to be able to provide for and fight for Brooke's educational rights, other families are not as fortunate. This is why we have made our fight for Braille literacy as public as possible. This is not just about Brooke. There truly is a Braille crisis in Kansas.
We know of six students across three different Kansas school districts who have stopped receiving Braille in the last two years. Four of the six kids receive services in the school district that we pay taxes in. We are familiar with two other students across the state line in Missouri that the same thing happened to. For some of these students, this was temporary until the parents threatened legal action. For others, Braille was taken away permanently. Less than 10 percent of visually impaired people are Braille readers. Sometimes it's because individuals lose their sight at an older age. More likely, it's because they aren't offered proper time with a trained teacher of the visually impaired to learn Braille. Or maybe the school district refuses to pay for Braille materials. While some educators say that audio books or paraprofessionals can make up the difference in not having Braille materials, it's not true. You can't learn how to spell or use punctuation properly from audio books. Audio books are great for pleasure reading, but not as an educational tool. You can't complete your schoolwork if you don't learn how to use technology. If your aide fills in the answers to your work after you verbalize the answer, you become dependent on someone else. In short, you are illiterate. You will not be independent in school or in life.
When we went to enroll Brooke in preschool, we were told by the Blue Valley School District that she did not need Braille instruction. Brooke has a degenerative eye condition. We knew her prognosis would not allow her to be a print reader for long. Blue Valley refused to help pay for any specialized instruction, so we paid privately for Brooke to go to the Children's Center for the Visually Impaired so that she could start learning Braille at age three. My background as an occupational therapist made me realize that the best time to have the sensory and touch fibers in her hands expand their abilities was at a young age. The brain is plastic. You can mold and change your neurologic abilities much more easily when you are younger. This includes learning another language, including a written tactile language such as Braille.
We met with the school district multiple times before deciding where to send Brooke to elementary school. At Blue Valley Brooke was offered minimal time with a TVI [teacher of the visually impaired], but we were assured that she would get paraprofessional support—a paraprofessional who does not know Braille, that is. As is quoted on the TSBVI [Texas School for the Blind and Visually Impaired] website, "When simply assigned to a student without proper preparation, paraeducators may act as a barrier between the student and peer involvement, improperly direct instruction away from the teachers, or reduce independent skill acquisition. Over-reliance on a paraeducator over time can lead students to develop passivity and dependence on prompts from others." Dependence on others is not at all what we wanted for Brooke.
Because Brooke was not offered a free and appropriate public education, we chose to compromise with the school district. They agreed to pay for her Braille materials at a private school as well as offering her Braille instruction, assistive technology instruction, and occupational therapy for a total of four hours per week in the public setting. In turn we paid for her weekly orientation and mobility training because they refused to take her off the public school campus. We also provided her with three to five extra hours of TVI instruction at the private school each week. Trust me, it has been expensive to say the least. But, we have said from the beginning that Brooke deserved a chance to be independent in life. Illiteracy does not lead to independence.
This was the arrangement until January 7, 2016, when we were told by Blue Valley officials that they would no longer provide her with Braille materials for the next school year. The special education director told us, "I'm sure it feels like the rug has been pulled out from under you." Kind of an understatement, don't you think? They had been advised by an attorney at the Kansas Department of Education that they could change Brooke's Individual Education Plan (IEP) without our consent. Brooke's IEP was changed by a prior written notice. In Kansas, a material change of 25 percent in an IEP requires parental consent. Blue Valley states that because they offered Brooke Braille materials of the Blue Valley curriculum, they did not change her services. They call it a "site change."
The only site change that occurred was when they moved Brooke from one elementary school to another to receive services. The new school had numerous ADA violations specific to visually impaired students according to federal regulations. Brooke was also not offered any O&M training prior to starting at this new building. To get that, we had to refuse to send her to the new school without safety training for emergency evacuation routes and sue the school district to be able to get that done.
We also had to file due process again due to the fact that the school district changed our child's IEP without our consent. While the Blue Valley School District states that we have no reason to sue them since they don't have to provide our child with Braille materials because she goes to a private school, that's not even part of our lawsuit. We didn't sue them to provide Braille for Brooke. That's another matter entirely. But, what cannot continue to happen is that school districts are allowed to sidestep the laws in Kansas. Just last week we found out that Blue Valley had removed the screen reader, screen magnification, and Braille translation software from the computer that our daughter uses at her school, despite the fact that they are legally obligated to provide those according to her education plan. Brooke could not complete her work until this was reinstalled on the computer. Families should not have to be constant watchdogs over school officials that we pay taxes to support.
Blue Valley told us that they spent $72,000 producing Brooke's Braille materials in third grade. Last year we were able to provide her with Braille materials for about $24,000. That includes the cost of purchasing a new computer, an embosser, updating Duxbury software, and buying paper and office supplies to produce the needed classroom materials. We borrow some textbooks from the Kansas Instructional Resource Center or other libraries for the blind. I type the rest of her required materials. I adapt a math workbook for her to use with her CCTV. Her private TVI produces her tactile graphics. Last year we spent almost $4,000 for a Braille prison program to produce her math materials because we aren't able to do that. We also outsource most of her maps since those can be difficult for us to produce.
That's a lot of materials to cover with $24,000, but I know it can be done. Instead of spending taxpayer's money providing children with Braille materials that statistics say make them much more probable of finding employment, the Blue Valley School District claims to have spent $130,000 of taxpayer's money to avoid paying for our daughter's books. $130,000 is only what they say they've spent on legal costs. Others claim that is not even close to what has actually been spent.
Is it a struggle for us to be able to provide Brooke with what she needs for the classroom? Yes. I cannot work outside of the home because I have to type materials for Brooke. It's financially draining. Is it cheating on the part of the school district? Yes. Is all of this worth it? Absolutely! Brooke is a straight-A student whose dream is to work at NASA. She is also a three-time defending champion of the National Braille Challenge. Since first grade, Brooke has won the highest score in reading comprehension once and twice has had the highest score in the spelling portion of the National Braille Challenge tests. People can say this is because Brooke is bright, but the only way it's possible is because of intense instruction with a teacher of the visually impaired. School districts choose to persecute the most vulnerable students. If textbooks weren't offered to a child who reads print, there would be a public outcry. Teachers who aren't certified aren't allowed to teach mainstream students. Laws protect those kids. But the blind kids can do without books and materials as well as having teachers that aren't certified. I know because that's what my daughter deals with every day. These kids are already blind; why rob them blind when it comes to an education on top of their disability? When I checked the Kansas legal statutes on Braille instruction, there were seven sentences in total. The TSBVI website has a document that is thirty-two pages long. Something has to change in our state. Braille instruction is critical.
The unemployment rate for visually impaired people is 74 percent. School districts and colleges in Kansas are directly contributing to this high rate of unemployment when kids are shuffled through their system without proper support, materials, and instruction. Let me share with you some sobering statistics about blind or visually impaired people in the United States from nfb.org:
With statistics such as these, you can guarantee that visually impaired kids are destined to require public assistance. Why not promote Braille and ensure that these kids can be productive citizens who are able to be employed? School districts in Kansas hide behind loopholes and cheap legal tactics in an effort to justify their failure to educate these children. As a family, we have proven that it can be done. With the help of a tremendous TVI and a school that allows us to provide Brooke with what every blind child should receive, it can be done. I just want to reiterate that the Blue Valley School District has chosen to spend $130,000 of taxpayer's money instead of the $24,000 that it would take to provide Brooke with Braille. At the very least, it's the definition of incompetence; it's certainly negligence, and it's evidence that there truly is a Braille crisis in Kansas. We will continue our fight not only for Brooke, but also for all visually impaired students in Kansas. It's not an exaggeration to say that we are changing the world one dot at a time.
For more than seventy-five years the National Federation of the Blind has worked to transform the dreams of hundreds of thousands of blind people into reality, and with your support we will continue to do so for decades to come. We sincerely hope you will plan to be a part of our enduring movement by adding the National Federation of the Blind as a partial beneficiary in your will. A gift to the National Federation of the Blind in your will is more than just a charitable, tax-deductible donation. It is a way to join in the work to help blind people live the lives they want that leaves a lasting imprint on the lives of thousands of blind children and adults.
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Creating a will gives you the final say in what happens to your possessions and is the only way to be sure that your remaining assets are distributed according to your passions and beliefs. Many people fear creating a will or believe it’s not necessary until they are much older. Others think that it’s expensive and confusing. However, it is one of the most important things you will do, and with new online legal programs it is easier and cheaper than ever before. If you do decide to create or revise your will, consider the National Federation of the Blind as a partial beneficiary. Visit www.nfb.org/planned-giving or call (410) 659-9314, extension 2422, for more information. Together with love, hope, determination, and your support, we will continue to transform dreams into reality.
The National Federation of the Blind knows that blindness is not the characteristic that defines you or your future. You can live the life you want; blindness is not what holds you back. A donation to the National Federation of the Blind allows you to invest in a movement that removes the fear from blindness. Your investment is your vote of confidence in the value and capacity of blind people and reflects the high expectations we have for all blind Americans, combating the low expectations that create obstacles between blind people and our dreams.
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