Future Reflections Special Issue on Advocacy
by Carol Castellano
From the Editor: For many parents, the process of creating an Individualized Education Program (IEP) for a blind or visually impaired child can be daunting. "I'm not a professional," parents sometimes say. "I don't really know what my child needs." In this article, author and longtime advocate Carol Castellano shows how a positive philosophy about blindness can inform the IEP process and ensure that a blind or visually impaired child receives the appropriate education.
IEP team members almost fall out of their chairs when I declare that the best thing they can do for a blind/visually impaired student is to forget that he or she is blind. Most of the time, the blindness is the only thing that they can see. It is, they assume, the reason the student needs special education. I try to show them that the blind/VI student needs the same education as everyone else. Only the methods by which we accomplish that goal make the education of blind/VI kids different.
I start with two basic premises. First, blind people can lead normal lives. Second, blind people can achieve what they want in life, according to their abilities and interests. The amount of eyesight a person has does not matter.
How do I know these things? Why do I believe them? I've read about Dr. Abraham Nemeth, blind from birth, who learned the New York City subway system when he was a little boy. He went on to become a college math professor and the inventor of the Nemeth Code for Braille mathematics. I know about Dr. Geerat Vermeij, blind from early childhood, who became a world-renowned marine biologist, and Erik Weihenmayer, blind from adolescence, who has scaled the tallest mountains on earth, including Mount Everest. The stories of these and other ordinary and extraordinary blind people taught me that blindness need not stop a person from achieving a goal or accomplishing a task.
The realization that blind/VI people can accomplish and achieve raises expectations. If that guy can learn the subway system, maybe my kid can cross the street. If that other guy can recognize rare biological species, maybe my kid can take a lab science. If that last guy can climb Mount Everest, maybe my child can take gym. Once we have the awareness and the raised expectations, all that's left is to figure out the how-to.
In order to succeed in school, blind/visually impaired children--like all children--need to reach a certain level of development. They need the ability to interact with other children and with adults other than family members. They need to know how to share, to take turns, and to play cooperatively. They need the ability to sit still for a little while, to pay attention, and to follow directions. Finally, they need to be able to learn from someone new. They also must have the concepts that underlie formal learning, the ability to stay on task for a short time, and enough self-help skills that they can eat a snack, use the bathroom, and hang up their coat and backpack independently.
How does a child get to this point? Normal life experiences enable children to make progress in all the regular developmental areas that get them ready for school--gross motor, fine motor, speech and communication, general knowledge, concept development, and self-help. Families with blind/visually impaired children might need to pay a little extra attention to certain of these areas--for example, motor skills, concept development, and self-help skills. In addition, as parents of blind children, we have to make an explicit effort to ensure that our kids become independent. We need to make certain we don't hold them back because of our own fears (they might get hurt! they might get lost!) or our lack of information (we're not born knowing how blind people cook, for example). We must make sure our children learn to do tasks for themselves and that they internalize this expectation. We must guard against overprotection and learned dependence. It is all too easy for people to do things for the blind/VI child that the child could and should be doing for him/herself.
In addition to the regular developmental areas, blind/VI children must learn to use their other senses--touch, hearing, taste, smell, and body position. They must develop listening skills and memory, spatial awareness and body awareness. These are the predecessors to the formal skills they will learn later, such as Braille, access technology, and cane travel.
Once blind/VI children get to school, the goals for their education will be to participate fully and independently in the classroom and to grow up to be a self-sufficient, independent adult. These, of course, are the same goals that we have for all children.
The process of creating an appropriate IEP for a blind/VI student is the same as it is for any other student with an IEP. Observations and evaluations identify current levels of functioning, strengths, and needs. From the needs come the goals and objectives, and from the goals and objectives come the program and placement.
Academic or developmental plans can be made for the blind/VI student, just as they are for their sighted counterparts, if we first take blindness/visual impairment out of the equation. Think about what you would plan for the student if he or she were not blind/VI. Base the plan on the child's cognitive level, abilities, and interests, just as you would for a sighted child of a similar academic level.
Blind/VI students need and deserve the same information and education as their sighted peers. Blindness/visual impairment should never determine whether or not a student will be expected to learn a certain subject or master a certain skill. For example, blind/VI students take classes in math, the sciences, film, driver's education, and other subjects that might at first glance seem impossible or of no use to them. Blindness/visual impairment should not be the reason the child is placed in a special education or life skills class. Finally, academic plans for a student must be based on his or her cognitive level or developmental profile, not on how much eyesight he/she has.
Blind/VI students fall into three main categories.
1. Children who are progressing normally and are on track for various milestones. These children will have the same academic goals as their sighted classmates. The only difference is that they need materials in accessible formats.
2. Children who have an additional disability that affects their education. For these children, we must modify academic goals as necessary, and then add materials in accessible formats.
3. Children with severe additional disabilities. For these children we might plan more individualized and developmental IEP goals, and then add materials in accessible formats.
Within this framework, children in all three groups will learn the necessary skills and use the tools of blindness/visual impairment.
Whatever category your child or student falls into, the process will be the same. Think about what you would plan for this student if he or she were not blind/VI. Set academic or developmental goals just as you would for a sighted student with a similar learning profile.
If the student has no disabilities other than blindness or visual impairment, modifications in the academic goals will not be necessary or appropriate. The student will be expected to master the standard academic material.
Again, if the blind/VI student has a learning or other disability that affects education, make the appropriate modifications to content, study guides, testing, etc., just as you would if the student were sighted. Then add in the adaptations for blindness/visual impairment as needed, such as specialized materials, hands-on or close-up presentation, and verbal description.
In addition to needing the same education as sighted children, blind/VI students need to be able to perform tasks on an age-appropriate level (or a stage-appropriate level, in the case of children who are developmentally delayed). This is where the special skills of blindness/visual impairment come in. A simple way to decide what specialized skills a child needs is to ask, "What is the task before the child? Does the child have the skills and tools to accomplish it?" If the answer is no, then teach the child the necessary skills so that he/she can accomplish the task independently. Don't accommodate! Teach skills! If you notice areas in which the student lags behind, develop a plan of action to get him or her caught up. Blindness/visual impairment does not mean that the student must lag behind sighted peers.
In order to have a meaningful IEP and make the education of the blind/VI child work, certain basics must be in place:
The IEP should contain an explicit goal of independence so that the student can become independent in the classroom and in all areas. The student should make progress toward independence every day! The team must build in a long-term timeline for independence.
It is important to keep in mind that most of the aide's tasks, including direct assistance, should be aimed at facilitating independence and teaching the student to do tasks for him/herself, not simply doing things for the child. As early as possible, the aide must work toward teaching the student to pay attention to and respond to the teacher. In order for the child to progress in independence, the aide must be allowed, whenever the student is handling a task independently, to step back and do nothing without fear of criticism. Make sure that this, too, is written into the IEP, along with plans for phasing out direct assistance by the aide. Without a plan, it might never happen!
With a philosophy-based IEP, expectations will be high. The student will receive the appropriate level of education, materials will be ready in accessible formats, and teachers will know how to include the student in all activities. The child will learn the skills and be able to use the tools necessary to participate fully, and she or he will be on the way to an independent life.