Future Reflections Winter 2011
by Eric Vasiliauskas, MD
From the Editor: The father of two blind sons, Dr. Eric Vasiliauskas (affectionately known as Dr. V) is a leader in the California Parents of Blind Children and a member of the NOPBC board. At the 2010 NFB convention he spoke on a panel that addressed "The Failures of the Education System." This article is based on Dr. Vasiliauskas's presentation.
As a parent, I can attest that many challenges still exist in the current educational system for blind and visually impaired children. I will start with several illustrative anecdotes.
When we began our journey thirteen years ago with our older son, Vejas, Braille books for very young children were virtually nonexistent. We bought some popular storybooks from the children's section of our local bookstore, and my wife Rasa added Braille to the print pages. When she had questions she turned to our first teacher of the visually impaired. It quickly became clear that our TVI was not proficient enough to answer even simple questions about Braille contractions reliably.
Questioning the Professionals
Later we started to ask VI professionals about how a blind person does this or that. All too often there was a telling pause before the professionals came up with an answer. Eventually, to our shock, we realized why so many TVIs and O&M instructors had trouble answering our questions. They simply didn't know or socially interact to any significant degree with successful, independent blind adults.
A few years ago, I attended an O&M lecture geared toward professionals. The topic was grade-level-appropriate O&M instruction. At one point, an O&M instructor in the audience voiced her perspective. She commented that if her students didn't learn concepts "on her watch" it was okay with her. As she put it, "There's always rehab." In the discussion that followed, it was clear that many of the other professionals held the same viewpoint. They did not seem to accept the responsibility of teaching from a paradigm of equal and age-appropriate expectations.
Recently, a colleague in my field contacted me for advice. After extensive evaluation, his ten-year-old had been diagnosed with visual field defects. He can see the beginning and end of longer words, but not the middle portion. He is bright and has been able to fill in the literal blanks based on context, but his desire to read books and his reading comprehension have dropped over the past few years. Having seen how well my sons are doing, the boy's parents wondered about Braille as a possible solution. Their son was very excited about the proposal. Within four weeks, with minimal formal instruction, his fingers were reading at 40-50 words per minute. I wish that were the punch line, but unfortunately it is not. The boy's school district requested a formal assessment from one of the regional schools for the blind. The educator who performed the assessment stated, "We use large print for all kids with visual impairments. Kids who have vision don't need Braille. Braille is not as fast as print."
The Need for Data
When our eldest son made the transition from preschool to the elementary school system, our TVI told us that we were "too involved" and informed us that we would have to "back off" and let the education system take over. Statistics at the time showed that nationally only 45 percent of blind or severely visually impaired, but otherwise capable, students graduated from high school. Of those graduates only 16% went on to earn a college degree. We found these statistics and the subsequent employment statistics for blind adults very sobering. They highlighted the huge discrepancy between the academic accomplishments of sighted and blind children and the undeniable shortcomings of the education system for blind students in this country.
Some may claim that more recent outcomes, or some local outcomes, are much better. If so, where is the actual data? How accurate is it? And who collects it? I am under the impression that academic performance statistics for Braille and large-print readers are not well tracked, if at all--locally, statewide, or nationally. How many programs and states can proudly show data on the subsequent employment and career choices of their former blind students? Without current and accurate statistics, how can parents be asked to "back off" and to put their full trust--their child's future, their child's life--in "the system?" How can we affect change and measure impact if there is no mechanism for accurately recording the current conditions and progress, or lack thereof, over time?
One possibility is to consider an approach being used to answer important questions in medicine, a National Electronic Outcomes Registry. Such a registry could track local, regional, and national outcomes in real time across a wide range of academic and skills areas for informational, comparative, and accountability purposes. It could even include fields for yearly justification of why a given child is not being taught Braille. The performance and accountability data could be used to motivate state and local VI program administrators to shift the paradigm from one driven by the wish to meet minimal legal requirements to one that emphasizes quality, true success, and a given child's best interest.
Proficiency in Technology
The ultimate goal of the education system should be simple and clear. By the time a student graduates from high school, he or she should not only meet the general academic curriculum requirements, but should also have acquired the blindness skills needed to pursue his/her post-high-school dreams. You would think that a child who has received quality O&M training and VI services for fourteen to eighteen years would have learned the necessary blindness skills and would have the confidence to travel and live independently. Unfortunately, such an accomplishment is the exception rather than the rule. Too many kids turn eighteen without attaining the age-equivalent skills of their sighted peers. These deficits put our blind young people at an avoidable disadvantage as they start college or attempt to join the workforce. Let me be blunt. In many cases the education system is responsible for creating functional handicaps where they need not, and should not, exist.
The scope of skills that blind children need to master is ballooning. Currently, each blind child's fate is to a large degree delegated to that child's IEP team. The team is not a static entity, but consists of a series of transitional teams. Each team passes the child and family to the next level, from preschool to elementary school, from elementary school to middle school, and from middle school to high school. Each team focuses on getting the child through the few years for which it sees itself responsible before "passing the baton." Apart from the family, there is no long-term memory of prior struggles and successes, no vision for the future beyond that particular year or two. Teams tend to focus only on the academic portion of the curriculum. Because there is no clear legal obligation, the education system often does not take responsibility for ensuring that a child learns the additional blindness skills he/she needs to function independently.
Technology is undeniably leveling the playing field in the workplace. Education, too, is shifting more and more toward technology-based and Web-based learning. In fact, at a conference this spring, the Manager of Specialized Media of the California Department of Education stated that within five years school textbooks for all children in California will be provided in electronic formats. Early in the last school year, I received a lot of grief when I requested supplemental e-text files of my son's seventh-grade embossed textbooks. I was told that the files, which the TVI could download from the Department of Education Website, were "not student-ready" or were "not clean enough." Yet at the national and state levels, there does not appear to be a clear proactive plan to ensure that Braille-reading students will be provided with "clean" transcriber-proofed e-text. "Clean" Braille and graphics aside, how prepared are school districts, TVIs, and students for this transition? How are kids in elementary and middle school going to access and process their academic materials efficiently? Currently many of them don't have the necessary tools. They lack screen readers or equipment with refreshable Braille displays. Even if they had the proper software and hardware, few students today have the Braille skills and technology skills to work with electronic texts.
Before my son Vejas entered preschool, I realized that an alarming number of TVIs and O&M instructors were neither comfortable nor proficient with basic blindness technologies. Subsequent experience has only confirmed that impression. In the twenty-first century, it is no longer acceptable for students in TVI and O&M teacher preparation programs to receive superficial instruction about such technologies as screen readers, Braille notetakers, and GPS. "Exposure level instruction" in technology leaves teachers uncomfortable with its use. They incorrectly perceive assistive technology as difficult to use and hard to teach. Lack of familiarity and comfort translates into a natural tendency for teachers to delay introducing skills, claiming that the student is too young or "not ready." It seems self-evident that people who have chosen to make the education of our children their profession should be expected to demonstrate true proficiency in the use and teaching of assistive technology.
TVIs and Braille
As we know, proficiency problems are not limited to electronic technologies. They extend to basic skills such as the slate and stylus and to Braille itself. Too few TVIs are proficient in Braille. Some don't have any Braille readers on their caseloads, which means that if they are sighted, their Braille skills get rusty over time. As a result these TVIs are unlikely to suggest Braille for students with low vision, knowing they will have to relearn it in order to teach it. Unfortunately, those teachers and administrators who are most proficient in blindness skills, the blind themselves, are underrepresented in both academic teaching programs and local VI programs.
Raising the Bar
The bar of expectations for blind students--and their teachers--needs to be raised. The performance of blind students must equal that of their sighted peers. California has taken a step in this direction, becoming the first state to adopt formal grade-level-equivalent standards for Braille math and Braille reading. These standards even include instruction in the slate and stylus. This adoption is very commendable. It represents a significant leap forward and should be modeled in all states and beyond.
Nevertheless, the standards do not go far enough. Reading fluency standards need to be added as well. Quality data regarding Braille fluency is greatly needed. Existing studies of childhood reading fluency may reflect and inappropriately validate the current tendency to accept lower reading rates for Braille users. We need published research that documents what can be achieved with early Braille immersion, appropriately high expectations, and quality training.
An additional approach to consider is the creation of a YouTube-type menu with a variety of children and adults reading Braille aloud. Skillfully edited video snippets that show individuals reading fluently and engaging in other activities would send a persuasive, difficult-to-refute message to educators, parents, and the public.
In my professional life, I am an academic clinical researcher. In my search to understand the basis for the philosophical beliefs in the VI/blindness field, I have come to the dismaying realization that there is a lack of high-quality research in the area of childhood VI and O&M. Studies too often fail to differentiate between the abilities of children who have been blind from birth and those who became blind at a later age. Children with low vision are not distinguished from those who are functionally blind. Research seldom takes into account children who have fallen behind due to the delayed introduction of Braille and other blindness skills. Some studies even fail to address differences between age groups. Furthermore, most studies of blind children are not well designed. Study groups are too heterogeneous or contain too few subjects for the results to be statistically sound. Conclusions are often inappropriately overstated, if not by the studies' authors, then by those who quote the studies to defend their positions. As a result, much that is presented as fact regarding blind children is drawn from personal experience, based on small, non-generalizable studies, or extrapolated from the recollections of blind adults.
I would like to point out another fundamental problem in O&M instruction for blind children. Most O&M training programs follow an adult rehabilitation model. When applied to children, this approach is inherently flawed. Children are not simply little adults. Few people would deny that different methods must be used to teach skills to adults, toddlers, preschoolers, and high school students. Yet few O&M programs offer an approach suitable for teaching children to travel independently. Childhood O&M needs to be formally developed as a specialty.
Interface with the Blind Community
The philosophical and functional challenges that exist in the education system in 2010 are significant, but they are not insurmountable. The accomplishments and successes of my children are due to a team effort. Our team extends well beyond our home and our local school system. It involves critical input from the NFB and others in the blind community. By attending a variety of conferences and by reading articles such as those in Future Reflections and the Braille Monitor, my wife and I began to learn about blindness-related issues. We met other parents and came to know educators outside our local sphere. Most important to us were our interactions with members of the blind community, in particular our extended NFB family. Our family has encountered many hurdles along the way, but we have developed an extensive support system. A network of acquaintances, teachers, mentors, and friends provides us with critical perspective and insight.
Through our intense learning process, we have come to realize that there is little difference between what is possible for a blind person and for a sighted person. This conviction has become our operational paradigm. While there are exceptions, this paradigm is not held by many in the current academic blindness/low-vision field.
To educate and prepare a blind child for life, a child's team needs to involve a direct interface with the blind community itself. There also needs to be more direct interaction between academic training programs and the blind community. I sense that some members of the younger generation of student professionals and teaching program graduates are curious about the "alternative" approaches and techniques of the NFB. It's time for us to go mainstream and actively step out into the academic community. We need to put together more NFB-sponsored formal programs at regional, state, and national educators' conferences. I urge O&M professionals to be more vocal on the O&M listservs and TVIs on the TVI-oriented lists. Also, consider the possibility of formally inviting some "traditionally-trained" student O&M and student TVI professionals-in-training to next year's national convention, where they can participate in the activities and interact with blind people from all walks of life. The experience of immersion with the successful blind is sure to be a perception-altering experience. It will surely generate some thought-provoking classroom discussions when the students return to their programs. The ripple effect may be surprising.
I'm going to wrap up with the following thoughts. Behind every truly successful blind child is an involved parent. Show me the parent of a young Federationist, and you will show me someone who is supportive, invested, and informed. Along with many other parents, I would like to see educational professionals--TVIs and O&M instructors--actively collaborate more closely with parents and with the blind community. By working together we can synergize our efforts for the most positive impact.I urge you to intensify efforts to access families much earlier on. Early exposure to the NFB philosophy represents true, meaningful, and life-altering early intervention. The impact of such an investment of time and resources will pay off manyfold. As you well know, today's young children are the NFB's future--the membership and leadership of tomorrow. Having had the privilege to meet and interact with the members of the NFB's Educational Reform Task Force, I am reassured that there is in fact inspired vision, conviction, and hope for positive reform.