by Barbara Cheadle
From the Editor: Untidiness is one of the hallmarks of real-life struggles. Even reduced to words on paper, where they inevitably lose some of the blurriness of their outlines, true human dramas resist being tucked into the comfortable beginning-middle-end story structure. The following is a memorandum that Barbara Cheadle, President of the National Organization of Parents of Blind Children, wrote to President Maurer reporting on a case that the NFB has become involved with during the last couple of years. It would be pleasant to report that all is now well with Isa Hullender and that she will from now on receive the Braille services she deserves. In fact that may well happen. Her Individual Education Plan (IEP) now includes a significant amount of Braille instruction, but, as every parent of a blind child knows, a good bit of slippage can occur between the IEP and the child's classroom experience. Here is the story of a determined mother and the NFB advocates who are helping her fight for what her daughter needs.
Date: February 14, 2001
To: Dr. Maurer, President
National Federation of the Blind
From: Mrs. Cheadle, President
National Organization of Parents of Blind Children
Re: NFB helps a child in Georgia get Braille
As of Friday, January 12, 2001, with the help of the National Federation of the Blind, eleven-year-old Isa Hullender of Trion, Georgia, will finally receive Braille instruction at a level that should allow her to become a competent Braille reader.
The school district had been on the verge of pulling the plug entirely on the infinitesimal Braille instruction Isa had been receiving. That all changed, however, when NFB advocates--Pat Jones (President of the Tennessee Valley Parents of Blind Children) and her two blind teen-age granddaughters, April and Amanda--presented the IEP team with the NFB independent learning media evaluation. Despite Isa's low vision and capacity to read some print, the result of the independent evaluation (conducted by Janet Bernhardt of Louisiana on contract with the NFB) was unequivocal: "Isa needs Braille instruction...in the exact same proportion that her sighted peers have print reading and writing language instruction." (Although unable to be present at the IEP meeting, the assessor, Janet Bernhardt, participated in the meeting by conference telephone call so that she could answer questions about her assessment.)
The case was made so strongly that the amount of instruction time was increased on the IEP from two hours a week for all services from the teacher of the visually impaired (seldom did Isa get even an hour of that time for a Braille lesson) to daily Braille instruction of almost an hour a day. (She now gets one hour a day four days and forty-five minutes one day a week.)
Isa Hullender's situation is a classic example of the way school districts can and do subvert the intent of the Braille provision in the 1997 IDEA amendments. IEP teams do not actually refuse to put Braille instruction in the IEP if the parent insists; instead they provide for so little instruction time that the child is doomed to fail. Sometimes the amount of time for direct Braille instruction is never specified. The hours for all the so-called vision services provided by the teacher of the visually impaired are all lumped together, essentially allowing the TVI [teacher of the visually impaired] arbitrarily to choose just how much time he or she will devote to Braille instruction.
Even when the instruction time on the IEP is adequate, the child may never make any progress because the school doesn't hire a competent Braille instructor. School districts can dodge their responsibilities under the law in many ways. And that's exactly what three different school districts did to Isa Hullender for the first five years of her education. Here, briefly, is the sad history of Isa's struggle, as related by her mother, Tammy Pettyjohn, to learn to read and write Braille:
First Grade: Gordon County, Georgia: Braille is on the IEP, but Isa doesn't get any instruction because the county doesn't have a Braille teacher.
First Grade: Isa is held back a year at mom's request. A teacher of the visually impaired (TVI) is hired. The TVI gives Isa a brief trial with Braille (Tammy reports that it was three days), and decides not to pursue it.
Second Grade: Braille is taken off the IEP. Mom (Tammy) finally gets the team to put it back on the IEP about half way through the year (December). The IEP provides for fifty minutes--less than an hour--of Braille instruction per week. By the end of the school year Isa has been introduced to the Braille alphabet. She has not been introduced to the Braillewriter.
Third Grade: Parents move to Walker County, Georgia. The TVI in this county doesn't know Braille but is willing to learn. Mom gets the Braille instruction increased to three hours a week on the IEP, but instruction continues to be sporadic and rare.
Fourth Grade: Parents move to Chattooga County, Georgia, in search of a better program. The TVI knows Braille, but, because Isa has some vision, the teacher is opposed to teaching her Braille. The IEP hours for all TVI services are cut from three hours a week to two. The TVI constantly complains about teaching Braille, often finds other things to do with Isa during the time she is supposed to be giving Braille instruction, and tells Isa that she (the teacher) doesn't think Isa needs Braille. Finally, the TVI tells Isa's mother, Tammy Pettyjohn, that she is going to recommend that Braille instruction be taken off the IEP.
Because Isa is not getting even the limited service required on her current IEP, and because she is fearful of losing even more, Tammy files a complaint with the state department of education and asks for another IEP meeting. The team meets and at the parent's request decides to request a battery of assessments, including a Learning Media Assessment for Isa from the Georgia Academy for the Blind. As the time grows closer for the assessment, however, Tammy begins to have doubts about the quality of the assessment she will get.
At this point--October, 2000--Tammy Pettyjohn, who has been on the Future Reflections mailing list since August, 1998, contacts the National Office of the National Federation of the Blind. She wants more information to boost her belief that Isa needs Braille, and she wants someone to go with her on the Georgia Academy for the Blind assessment date and to subsequent IEP meetings.
However, the date for Isa's assessment is so close that it is not possible to get an NFB advocate to go with Tammy and Isa to the school. But McArthur Jarrett, President of the NFB of Georgia, makes plans to go as her advocate at the IEP meeting at which the assessments will be reviewed, and I immediately send her materials about the law and case histories regarding Braille literacy for low-vision children. Tammy sends us copies of Isa's records, and McArthur and I consult with Tammy and each other to plan the next steps. Hours are spent on the phone as we get to know Tammy (and she, us) and provide her with the information, encouragement, and advice she needs.
The Learning Media Assessment report from the Georgia Academy for the Blind turns out to be as dismal and inadequate as Tammy had feared. No attempt is made to determine Isa's current level of Braille decoding skills or Braille reading or writing skills. She is not evaluated to determine how long she can read print before fatigue sets in. Nor is there any attempt to determine if her visual print-reading capacity will be adequate to meet the demands of reading requirements in the years to come. Here's what the assessment states about Braille for Isa: "Potential for Reading and Writing in Braille: Isa demonstrated no reliance on tactile information during the period of this evaluation. During the evaluation, when a page was presented that had both print and Braille, Isa visually noted the Braille and commented. She visually read the information on the page and made no attempt tactually to read the Braille. It is the opinion of this evaluator that Braille instruction is not indicated at this time."
The print evaluation report is no less astonishing. It states that "Isa easily read materials which were presented in clear, bold 24-point print with double spaced lines." and "When asked to read back words she had written, Isa did so more from memory than actually seeing the words and noted as she read that she may have misspelled some of the words."
In November the assessment is reviewed at an IEP meeting. McArthur Jarrett attends as the NFB advocate. Also with Tammy is a parent advocate who has helped Tammy in the past on some OT and PT [occupational and physical therapy] issues for Isa and an attorney from a disability legal service. The Chattooga school district also has an attorney present. McArthur Jarrett articulates a strong case for Tammy's position about Braille literacy, but he is undermined by Tammy's own attorney who does not understand the blindness issues. (Neither does he seem to understand whom he is there to represent--a point he and McArthur have a heated discussion about after the IEP meeting.) According to Tammy and McArthur, the meeting finally deteriorates into a closed discussion between the two attorneys. Nothing is ready to be finalized by the end of the meeting.
We regroup. Tammy fires the lawyer, McArthur talks to the parent advocate to be sure we have an understanding about how we will cooperate as advocates in the future concerning the blindness and non-blindness issues, and I give Dr. Maurer an update and get approval for the NFB to contract for an independent learning media assessment. The law is on our side, but the key to getting the law's Braille provision implemented is in the evaluation. The school district has an evaluation; Tammy does not.
So Tammy tells the school district not to schedule another IEP meeting until she has her independent evaluation in hand, and I proceed to locate an expert who can out-credential their expert from the Georgia Academy for the Blind. From my own experience years ago in going to due process to get Braille for my son, Chaz, I learned that it is not a good idea to get an assessment from a teacher in the same state. There are so few TVIs that everyone knows everyone else. The TVIs depend a lot upon their colleagues' good will for peer support, resources, and information. And no matter how inadequate the state school for the blind may be, the TVIs also depend upon it as a resource for their students and for themselves. It did not seem wise, then, to ask a teacher in Georgia to do the assessment.
However, Louisiana is not too far from Georgia. Sure enough, Federationist Pam Dubel, Assistant Director of the NFB's Louisiana Center for the Blind, was able to point us to an expert that would meet Isa's needs--Janet Bernhardt. Bernhardt, an award-winning educator, has over twenty years of experience as a TVI and is currently the Outreach Coordinator for the Louisiana School for the Blind. She is a low vision specialist who is proficient in Braille and passionately supports Braille literacy.
The NFB flew Janet Bernhardt to Georgia, and on December 2, 2000, Mrs. Bernhardt conducted a Low Vision and Learning Media Assessment for Isa. The ten-page assessment report is thorough and the conclusion concise and meticulously documented: "Isa needs Braille instruction." It was decisive enough that, with the advocacy of NFB members Pat, April, and Amanda Jones, it wins the battle for Braille at Isa's January 12, 2001, IEP meeting.
Of course there is not yet a "happily ever after" ending. Braille is firmly established in the IEP with sufficient instructional hours to begin to make a difference. But Isa still has the same Braille teacher who didn't want to teach her Braille in the first place. Much remains to be done to change attitudes and expectations of everyone--TVI, classroom teacher, instructional assistant, etc.--who works with Isa. But there is now reason to hope and to be optimistic. Tammy reports that, since the IEP meeting and for the first time since she began school in this district, Isa is happy and looks forward to going to school.