American Action Fund for Blind Children and Adults
Future Reflections Special Issue: Early Childhood ADVOCACY
by Kimberly Banks
From the Editor: One of the speakers at the 2018 NFB National Convention in Orlando, Florida, was Johnny W. Collett, the assistant secretary of special education in the US Department of Education. When he took questions at the end of his presentation, sixteen-year-old Alyssa Mendez stepped to a microphone. Alyssa explained that for the past two years she and her family have been fighting to obtain Braille materials and technology training from her school district. Sadly, Alyssa and her family are not alone, but their perseverance and resourcefulness can point the way for others who face similar struggles.
My daughter, Alyssa, had severe nystagmus when she was born. When she was six months old she was diagnosed with an eye condition called optic nerve hypoplasia (ONH). Alyssa started school in Georgia, where she got the services she needed from her TVI and the rest of her team. When she entered kindergarten she began learning Braille. Because Alyssa had some functional vision she was a dual-media learner, using both Braille and large print. As she progressed through school we found that Braille was more appropriate for her because she experiences eye fatigue and intense migraines when she reads print for more than a few minutes at a time. At best her visual acuity is 20/350.
When Alyssa entered eighth grade, our family moved to Florida. After months of research we settled on the town of Oviedo, a suburb of Orlando. We chose Oviedo because the schools were highly rated, and we wanted Alyssa to receive the best public education that was available.
We were very happy with the teacher of the visually impaired (TVI) Alyssa had in eighth grade. He was completely on board with Alyssa's need for Braille, and he even attended a teachers' conference sponsored by the NFB. Things weren't perfect, but we never expected infallibility. When an issue came up Mr. P. worked with me, Alyssa, and her classroom teachers to find a way to make things work. At one point Mr. P. even collaborated with the coach of the robotics team to make the class accessible. Alyssa was the first blind student to take robotics at her school. We were a team, and we had the same goal—to provide Alyssa with the skills and materials she needed to access her world successfully, both at school and at home.
Mr. P. was a wonderful teacher who worked diligently to ensure that Alyssa received an education equivalent to that of her sighted peers. Unfortunately, he was retiring at the end of Alyssa's eighth-grade year. Alyssa would have a new TVI when she entered high school. She was on the right track. I had no doubt that Alyssa had the academic ability to acclimate to her freshman year if the appropriate supports were in place.
Alyssa got the Braille she needed in eighth grade, but the school refused to provide her with O&M (orientation and mobility) instruction. She started learning to use the long white cane in third grade, and since then she had always used her cane at school. Until we moved to Florida Alyssa received regular O&M instruction. When Mrs. H., the O&M instructor, evaluated her, however, she said that Alyssa used her vision well enough to get around. In fact, she didn't think that Alyssa really needed O&M at all. She didn't even think Alyssa needed a cane.
We fought for O&M instruction all through eighth grade, and we even requested to have an IEE (independent educational evaluation) done by someone other than Mrs. H. We waited and waited for the IEE to be scheduled. Finally we were told that an IEE could not be done because Mrs. H. had failed to do two key assessments to determine properly whether services were needed.
At the end of Alyssa's eighth-grade year, we also requested that Alyssa receive Extended School Year (ESY) services. ESY services would allow her to catch up on her O&M instruction, but that never happened. When I questioned the district's decision not to provide services, I was told that O&M and ESY were not academic priorities for Alyssa. To make matters worse, Mr. P. had been excluded from Alyssa's final IEP (Individualized Education Plan) meeting of eighth grade. To my knowledge he was never consulted by anyone on the new IEP team, other than me, about how Alyssa would transition from middle school to high school.
At this meeting we were dismayed to learn that Mrs. H. would be Alyssa's new TVI in ninth grade. I had a gut feeling that Mrs. H. was not going to be receptive to Braille.
Several days before the start of ninth grade, Alyssa and I went to an open house at the high school to meet her new teachers and pick up her textbooks. We were shocked to find out that none of her Braille books had been ordered. In fact, only one of her classroom teachers knew that a blind student would be in her class. Mrs. H. assured me that she would request all of Alyssa's books on the first day of school. When I asked her how Alyssa would do her work until the books arrived, Mrs. H. said that she could use her iPad to take pictures of the standard print books and then enlarge them herself. When I asked how Alyssa would receive her assignments if the teachers didn't know that they needed modification, I was told again that Alyssa could use her iPad to enlarge the standard print work and complete the assignments in print. Alyssa had an iPad with a Braille display, and Mr. P. had used it with her successfully in eighth grade. However, the new TVI didn't offer digital copies of Alyssa's materials.
In the first week of school, Alyssa's English class was assigned to read the book The Most Dangerous Game, and Alyssa did not have the book in Braille. I had the audiobook version, but the teacher would not allow her to use it. The book was available on Bookshare, but Alyssa and I didn't know how to download books onto Alyssa's BrailleNote Apex; neither did Mrs. H. Alyssa was given a regular print copy of the book, and again she was told to read it using her iPad. This wouldn't work. Alyssa's blindness prevented her from reading even large print for more than very short periods of time.
Eventually the school got a Braille copy of the book, but the Braille was so bad that Alyssa couldn't read it. The book had been scanned with OCR (optical character recognition), but the scan had never been proofread. There were major errors on almost every page, including lines of complete gibberish.
The debacle with The Most Dangerous Game was only the beginning. There were issues in every class, and every day Alyssa received materials that she couldn't use. She didn't get a copy of her geography book until January. Mrs. H. never figured out how to make graphics accessible. Sometimes Alyssa was given handouts with poor color contrast and print that was only slightly enlarged. She received a map of Europe that was so badly enlarged that I couldn't read it myself. Alyssa never received an accessible copy of the Periodic Table of Elements, but she had numerous assignments that required her to color or visually distinguish one element from another.
After multiple emails back and forth between Mrs. H. and her supervisors, the administration told the classroom teachers that it was their responsibility to provide Alyssa with accommodations. The teachers had no idea how to do that, even if they had the time and the desire to help. I insisted that the TVI be responsible for modifying Alyssa's assignments or at least that she supervise the classroom teachers' work. To my knowledge that didn't happen.
One of the goals in Alyssa's IEP stated that she should learn to advocate for herself. Actually, she has never had trouble letting people know what she needs. Yet for some reason the teachers began to blame Alyssa when her materials were not accessible. They claimed that she did not tell them when she needed materials in Braille. According to her IEP, anything that was more than two pages long in large print had to be Brailled. Sometimes the teachers would print an assignment in large print and give it to Alyssa two pages at a time, handing her the pages every five minutes so that they could say they never gave her more than two pages of large print at once. We later found out that this was how Mrs. H. had instructed the teachers to provide assignments if they hadn't received them from her in Braille in time.
I must have sent at least fifty emails about access issues to the administration that year, but the situation never got better. In our effort to address our concerns, we called multiple IEP meetings during the school year. We wanted to make the IEP goals so specific that they could not be called into question. I brought in a supervisor from the school district; she understood what we were trying to accomplish and was supportive in the beginning. Yet, even with the supervisor's support, things didn't improve. Merry Schoch, a blind clinical social worker and active Federationist, attended the IEP meetings with us as our advocate. After she got a taste of what was going on, she told me that Alyssa should no longer attend her IEP meetings. The teachers spoke about her in such negative terms that Merry felt it was hurtful for Alyssa to have to hear. It became more and more clear to me that, no matter what we said, the administration was determined to back Mrs. H., and the classroom teachers were looking to Mrs. H. for guidance.
At the end of her ninth-grade year, Alyssa had failed English. In that class Alyssa received the majority of her assignments in print. If she received Braille, the Braille was regularly not readable and arrived weeks and sometimes months after the materials were assigned. On the county's standardized assessment, however, Alyssa earned one of the highest scores in the district and the highest in her class. She received a D in geography, but she got a 4 on the AP geography exam, a score high enough to earn her college credit for the class. Those standardized tests were provided by the state or the College Board, and they were given to Alyssa in Braille. Alyssa also failed math, another class where she regularly didn't get accessible materials. We were told that Alyssa would need to attend summer school for English and Math.
Because Alyssa would need to complete summer school, she was denied ESY again, even though she had shown extreme levels of regression academically and hadn't received any instruction in technology from Mrs. H. Again I was told that ESY wasn't an academic priority. Summer school was offered via an online platform that wasn't accessible with a screen reader or a Braille display. When we brought this to the attention of the administration, we were told that if Alyssa couldn't access the program visually she would need to retake the classes in their entirety in tenth grade.
At that point the administration shared that if Alyssa could pass the competency portion of the online summer school classes, she wouldn't have to complete the full curriculum visually. Because the online test was inaccessible, I requested that Alyssa's scores on her standardized exams be used to replace the competency test. That request was denied. Alyssa decided that she use her limited vision to take the math competency exam. She completed the test with an A in a few hours. When I picked her up from school, she was experiencing a migraine so severe that she was weeping. She was in physical pain for several days, preventing her from attending summer school for English. The district still would not allow Alyssa to prove her competency for English with her standardized exam grades, nor would they provide the materials to Alyssa in Braille. However, they ultimately agreed to allow me to act as a sighted reader for the class.
At the beginning of tenth grade, the school district asked us if we would like a different TVI. We said we would be willing to continue working with Mrs. H. if Alyssa got the materials she needed. The district decided to change the TVI anyway, on the basis that perhaps there was a personality conflict between us and Mrs. H. Alyssa's new TVI would be Ms. L.
Ms. L. was a lovely person, and she tried to start off on a good note. This time, when classes began, Alyssa had most of her Braille textbooks, and she started getting her tests in Braille as well. However, she still had daily problems with class handouts and worksheets. She simply wasn't getting the materials she needed to do assignments. In ninth grade Alyssa kept a log of the inaccessible materials she received. She continued documenting when she received things that she couldn't use in tenth grade.
In Alyssa's IEP we had laid out several goals for technology training. The IEP stated that Alyssa would use a refreshable Braille display to edit and format documents. Like Mrs. H., Ms. L. did not know how to use a refreshable Braille display. Alyssa struggled in English because no one could help her download the short stories she needed onto her BrailleNote Apex. She could create documents on the Apex and save them to a USB drive, but her teachers refused to let her turn in assignments on a USB. Furthermore, due to administrative blocks on the district's network and on the device itself, she could not send assignments to her teachers via email. They wanted her to print out her work, but there was no printer in the classroom. To use a printer she had to leave class and go to the office.
So that she would receive credit, throughout ninth and tenth grades Alyssa turned in handwritten work to her teachers. Her handwriting is actually very neat, but she can't read what she has written. She can't make changes or corrections to her handwritten work, and she can't use it to study. She preferred Braille, but when Alyssa turned in assignments in hardcopy Braille they regularly didn't get transcribed or graded, and Alyssa would receive a zero.
Since Ms. L. could not provide technology training, at the suggestion of the district we tried to get instruction through our local Lighthouse for the Blind. Lighthouse said that technology instruction for school-aged students was the school's responsibility. Even if we did receive training through their adult program, they would have no way to ensure the implementation of the training in the classroom.
One of the biggest problems we ran into involved math class. For the most part Alyssa had been using large print to do math. When the materials were enlarged to 24-point font it worked reasonably well for her, though getting appropriate enlargements remained an issue. At this point I thought that if we removed print altogether from the IEP, the confusion over enlargements would end. We also knew that for higher-level mathematics, Alyssa would need to start using Braille. She needed to learn Nemeth Code and to get experience with tactile graphics. However, Ms. L. did not know Nemeth Code, and her knowledge of tactile graphics was very limited.
Alyssa's IEP stated clearly that she cannot effectively use a CCTV, due to nystagmus and visual fatigue. On one occasion the math teacher told Alyssa to use the CCTV to read her graphing calculator. When Alyssa reminded her that she cannot use the CCTV, the teacher told her, "You should try harder. You need to try harder to see better." Alyssa knew she would get a zero if she didn't do the assignment, but the teacher was asking her to do something that was impossible. She walked out of class and called me. Very upset, she asked me to pick her up from school.
When I got to the school forty-five minutes later, Alyssa was distraught. "I can't do what they want me to do!" she sobbed. "I can't see better! I wish that I weren't blind! I wish I could see!" We had known for months that the problems at school were taking a heavy emotional toll, but this incident was the final straw.
Eventually we requested mediation to try to work out some solution to the district's inability to provide instruction in technology and O&M and to attempt to get Extended School Year services moving forward. We also needed some resolution to the ongoing access issues Alyssa faced on a daily basis. The district ultimately agreed to several conditions. One was that they would pay for Casey Robertson, a TVI and instructor at Louisiana Tech, to provide Nemeth Code and technology instruction for Alyssa through distance learning. The district also agreed to have Alyssa use a BrailleNote Touch on a trial basis. The BrailleNote Touch has a screen that would allow the classroom teacher to see Alyssa's work and actively engage with her during classes without needing a transcriptionist. The district also promised to provide sensitivity training to the school staff.
Unfortunately, the school failed to comply with the mediation agreement. Alyssa got twelve weeks of instruction with Casey Robertson on using the BrailleNote Apex, but that was all. Alyssa flourished with Casey and her staff. She picked up Nemeth skills quickly and was back on track with her BrailleNote skills. Casey attempted to work with the school staff after discovering administrative issues that prevented Alyssa from implementing the skills she had learned with Casey. Unfortunately the district was not receptive to the guidance Casey was providing.
After the failed mediation we decided that due process was our last resort. Due process is a type of court proceeding. Each party presents its case before an administrative hearings judge. The process is substantial and costly. It takes several months, and it culminates with lawyers on both sides questioning witnesses. The prep work involved is extensive, and our attorneys, Kelly Hedum and Sam Filler, worked tirelessly to get us ready for the hearing.
Entering due process Alyssa had a GPA of 2.1, which is about a C average. We wanted to show the court that she had been graded unfairly because she didn't have the materials she needed. She did well when she had Braille materials, but otherwise she did poorly or couldn't complete her assignments at all. We also wanted the district to compensate Alyssa for the two years of technology, O&M, and ESY instruction that she had not received.
During the hearing one of the first questions the school's lawyer asked me was whether I am a certified TVI. I was also questioned about my involvement with the NFB. As the questions continued and more witnesses were called, I sensed that the school's attorney was trying to establish that my expectations for Alyssa were too high. I was pushing her to take classes that were too difficult for her. The attorney for the district never questioned witnesses about Alyssa's performance on standardized tests or asked about her academic success prior to entering high school.
Ms. L. testified that Alyssa is a kind, sweet girl, but that she didn't always use the equipment she was given. Opposing counsel never asked Ms. L. to explain the difficulties Alyssa experienced when she attempted to use her equipment or to acknowledge that some of the equipment that was provided to Alyssa was never even functional. Our counsel did.
Several classroom teachers testified that Alyssa was well mannered and bright, but that she rarely advocated for herself. If she did, she'd do so too late. They didn't willingly share the emails, chat logs, and notes that Alyssa had sent to them regularly, sharing her frustration that she wasn't getting what she needed in their classes. Kelly Hedum, our attorney, was able to show through the district's own evidence that Alyssa was regularly advocating for herself, even when no one was responding to her.
Then Mrs. H. got on the stand. She claimed that she had done the two key O&M assessments on Alyssa in eighth grade that we had been told were never completed. We had been denied an IEE because those assessments were never done. During her testimony Mrs. H. said that the year she had Alyssa as a student was the hardest year of her career. She testified that Alyssa was a bully and that she used me as a weapon in an attempt to get her teachers in trouble. At one point she said we used our right to procedural safeguards "almost as a game." Mrs. H. insisted that, in her professional opinion, Alyssa did not need a cane. She went on to say that Alyssa didn't really need Braille, and that I was pushing Alyssa to be blind. She claimed that Alyssa lied about eyestrain, migraines, and back pain to get out of doing her schoolwork. Even though accommodations and goals had been written into Alyssa's IEP, Mrs. H. said she didn't need them because she isn't really blind at all. She insisted that she was the expert; everyone else, including Alyssa, me, and her own supervisors prevented her from being able to do her job properly.
Mrs. H. went on to testify that she was so uncomfortable around Alyssa that after a while she stopped speaking to her! She would simply hand Alyssa an assignment without saying a word. She testified that she felt that, even without speaking to Alyssa, she was able to provide the appropriate level of instruction. It was hard to believe that an adult would treat a child in that way. It was hard to hear a teacher say those things about my daughter.
The things we asked for were very basic: accessible books and classroom materials, O&M instruction, and training with the BrailleNote. These were things any blind student needs to receive a comparable education to that of her sighted peers. Looking back, I think that for reasons I don't understand, the school was unable to provide the things that were required in Alyssa's IEP, things that would have ensured equal access. Rather than working with me and Alyssa and the many blind and sighted professionals who offered the district support in how to appropriately provide access to a blind student, the school went to extreme lengths to avoid serving her. Eventually, the district focused almost entirely on protecting itself.
The day after due process ended Alyssa left Orlando to attend the Louisiana Center for the Blind (LCB) STEP program. While she was there we saw wonderful changes. She was happy again. She gained confidence in her skills. She was mentored by blind adults who understand what she's gone through because they've been there, too.
During this long and sometimes agonizing process, we received invaluable support from the National Federation of the Blind. The NFB also paid to have Casey Robertson testify at the hearing as an expert witness for our case. During these two years of struggle, I have had the loving support of my friends and colleagues in the NOPBC (National Organization of Parents of Blind Children). Sharon Krevor-Weisbaum from Brown, Goldstein & Levy, the firm that handles many of the Federation's cases, provided consultation to our legal team in Orlando, The Filler & Hedum Law Firm.
I'm pleased to share that we received the judge's ruling just before this article went to press. We won! The judge ruled that Alyssa was denied a free and appropriate education (FAPE) for the entirety of her freshman year of high school and much of her sophomore year. The district was ordered to provide Alyssa with 184 hours of compensatory service time. The ruling also stated that a teacher who is not proficient in her specialty can likely not provide a child with a meaningful education. In addition, it said that in order for a blind child to receive a FAPE, a school district must provide accessible materials to that child, at the same time her peers receive them, 100 percent of the time, with no exceptions. Most importantly, the ruling validated Alyssa's experience by stating that she was a credible witness. The ruling said that when the school district's evidence or witness testimony contradicted Alyssa's, her testimony was deemed by the court to be the truth for the entirety of the record.
Unfortunately, not much has changed for Alyssa since she went back to school last week. She is still receiving inaccessible materials daily, and she is still being told to use her vision to access the curriculum. Alyssa has been in school for a week, and we have received no indication of how the district plans to implement the court order.
I don't know what the next two years will look like for Alyssa academically. I do know that Alyssa is blind and that she is not less than because she can't read print. I know that she hasn't been broken by what has happened to her. She is strong and intelligent and kind. I know that when she receives appropriate accommodations she can and has previously proven herself to be academically successful. So I will continue to advocate for her. I will be a support to her as she advocates for herself. Her future is full of potential. I just need to get her through high school.