EnVision A publication for parents and educators of children with impaired vision Spring 2006 Volume 11 Number 1 Looking Back, Looking Ahead Mary Ann Lang, PhD This year, Lighthouse International has been celebrating a milestone — 100 years of helping people of all ages overcome the challenges of vision loss. A Centennial seems a perfect time to reminisce. However, it is more importantly, a time to take stock and focus on the future. What can our past reveal that will enable us to see the future more clearly and carry out our mission more effectively? The authors in this issue of EnVision share their stories about what they've seen over time — and what they foresee as the challenges still to be met. Gordon and Scharf trace how two educational programs grew and inspire others. Boisvert spotlights the Lighthouse's current service model for children. Fischer and Corn outline the historical progress and needs in childhood vision assessment and optical device use. LaVenture sketches the role that parents have played in assuring that youngsters receive needed services. Campbell reminds us that the changes we've experienced are global in scale and that much is yet to be done. Finally, Ferrell asks us, "What do we really know?" and "How do we know it, really?" Each author, who has written in his or her own voice and with their own perspective, celebrates historical accomplishments — and challenges us to do even better in the future. (Box) Mary Ann Lang, PhD, began her career at the Lighthouse in 1976 and retired in 2005. She was the Founding Director of the Lighthouse National Center for Vision and Child Development, and the Founding Editor of EnVision. Mary Ann was also a guiding force in developing Lighthouse programs in the international arena, and we thank her for nearly three decades of dedication to our mission and service to people of all ages who are visually impaired worldwide. In This Issue - A Brief History of Early Lighthouse Programs for Young Children - The Lighthouse International School: Meeting the Needs of Children with Vision Loss from Life's Earliest Moments - The Lighthouse That Guided My Way - The Evolution of Pediatric Low Vision Testing - Optical Devices: Are We There Yet? - Tracing the Development of the Parent Movement - Education of Children Who Are Blind and Have Low Vision in the Developing World: A Case for Hope or Despair? - The Evolution of Evidence-Based Practice in Education: What Do We Know, and How Do We Know It? A Brief History of Early Lighthouse Programs for Young Children Arlene R. Gordon Re-reading Mary Ann Lang's introduction focused on assessment in last year's issue of EnVision, and ruminating on the Centennial celebrations of Lighthouse International, I could not help recalling the transformation of the Lighthouse Nursery School (LNS), begun in 1933, into the Child Development Center for Visually Impaired Children in 1967, which today, is called The Lighthouse International School. The impact of this transformation was not only felt by the children and their families, but also contributed to future directions of other Lighthouse programs. In 1965, the LNS had only nine children. While numerous applications were pending in the intake file, closing the school was under consideration. The applications were, for the most part, from parents of infants, toddlers and children with multiple disabilities, many as a result of a recent rubella epidemic. What became clear was that these children needed complete and sensitive assessments, and individualized educational plans — and their parents needed help in dealing with their own emotional needs and in learning how to participate in their children's development. To meet all of these service needs, the Lighthouse had to have the talents of a specialized assessment team, as well as close collaboration with parents and with teachers trained in both early childhood and special education. When presented with these compelling realities, the Program Committee of the Lighthouse Board of Directors no longer considered closing the school; rather, the question became one of changing and strengthening our program to meet an emergent need. Growth and Modernization The Lighthouse Board has a long history of always rising to address a community need. Following the retrolental fibroplasia (RLF) crisis in the '50s, Lighthouse Board members had assisted staff to recruit church, synagogue and public school classrooms (65 at its peak) to accommodate the huge number of children with RLF. So when the Board was planning to rebuild the headquarters building in 1960, recognizing that the RLF crisis had passed, the new design included a state-of-the-art nursery school to accommodate about 25 children. In addition to two classrooms, there were observation rooms, a large multi-purpose room and an adjoining roof garden playground. The building opened in 1964 but, by 1965, enrollment had been reduced to nine children, as mentioned on page two, due to changing service requirements. The physical facility was great but the educational focus did not meet the needs of the children and their families. In a relatively short period, we assembled an assessment team comprising a pediatrician, child psychologist experienced in evaluating infants and young children with multiple disabilities, a psychiatric social worker, a language pathologist and a pediatric audiologist. Internally, we turned to our low vision service for the visual assessment that was so critical to the individualized plan being developed for each youngster. To communicate a clear picture to parents, staff, the professional community and the public, we changed the name from the Lighthouse Nursery School to the Child Development Center, conveying the concept that the purpose was to offer an opportunity for the maximum development of the child, not a traditional nursery school program. The Invaluable Role of Families Emphasis was placed on the inclusion of parents, along with the assessment team and teaching staff. Their participation and incorporating their observations of their children's abilities paid off not only by evident follow-up in the home, but also in gaining significant information as to the child's functioning in many different areas. I remember vividly one parent who insisted that her toddler did have some vision despite all reports to the contrary. Staff were skeptical, but a teacher closely monitored the child's activities and realized that she did manage to avoid obstacles in a manner that could only mean that she was seeing them. This event early in the development of the new program led to much greater inclusion, and continual participation by, the ophthalmologic and optometric staff. While the low vision service had, for many years, evaluated children's vision, they had formerly not been involved with babies and toddlers. Adding enormously to the depth of the program was the utilization of consultants for regularly scheduled observations in the classrooms beyond assessment, and for in-service training of the staff (professional and paraprofessional). Parallel to the growing expertise of the team, the CDC linked with universities and paraprofessional training programs, and soon became an internship site for students. Following a reorganization that integrated children and adult social work services, a social work training unit was added to the CDC. Scholarships were provided for preschoolers when the assessment of their development indicated readiness for attendance at community nursery schools. And the Lighthouse provided ongoing consultation. Today's School has an integrated preschool for children with impaired vision and those who are sighted. Additionally, there is a preschool class for children with special educational needs, along with an infant intervention program and classes for toddlers not ready for integrated classrooms. See Kathy Boisvert's article, "The Lighthouse International School: Meeting the Needs of Children with Vision Loss from Life's Earliest Moments," on the next page to learn more about current services. The Role of Research The origins of what is today a complex and highly sophisticated Lighthouse research program in vision science and social and behavioral research can be traced back to the CDC. Earlier, the Lighthouse mission to support research had been carried out by collaboration with the Ophthalmological Foundation, which awarded small grants to hospital ophthalmological studies. Then in 1969, a request by myself and Louise Hodell, the Director of the CDC at the time, was made to the Lighthouse Board for a grant to underwrite a follow-up study by staff and a psychiatrist of former nursery school children. It was the first grant made for internal study and it was the forerunner of what became a Lighthouse research division of evaluative studies. This effort soon broadened to encompass most Lighthouse programs and, eventually, became an integral component of our Research Institute. With that first small step in evaluation and its subsequent extension to more and more Lighthouse services came the awareness of the need for much more accurate, standardized data collection and retrieval systems. This, in turn, led (through many progressions) to the development of our first agency-wide computerized Client Information System (CIS) in 1978. The CIS has certainly undergone many changes since then, and has evolved into the Electronic Vision Rehabilitation Record (EVRR), which was launched by the Lighthouse in the last few years. As the Lighthouse moved into broader areas of education and training of professional and paraprofessionals, it established the National Center for Vision and Child Development in 1988. And today, this Center, along with the National Center for Vision and Aging, is consolidated under the umbrella of the Lighthouse Center for Education. This issue of EnVision celebrates 100 years of Lighthouse leadership, and I hope this brief description of the history of children's services illustrates how one small program can plant the seeds for broader change. Arlene R. Gordon, Member of the Lighthouse Board of Directors, was the Associate Executive Director of the Lighthouse from 1973 until her retirement The Lighthouse International School: Meeting the Needs of Children with Vision Loss from Life's Earliest Moments Kathy Boisvert, EdD Lighthouse International has been a pioneer in improving educational opportunities for children with vision impairments for the last century. In 1909, the Lighthouse was instrumental in persuading the New York City Board of Education to admit children with impaired vision to public schools for the first time. And as outlined in Arlene R. Gordon's article, "A Brief History of Early Lighthouse Programs for Young Children" beginning on page 2, the Lighthouse opened its doors with a nursery school in the 1930s followed by the Child Development Center (CDC) in 1967. Since then, the CDC has grown significantly and today, under the name of The Lighthouse International School, it provides comprehensive services for children with vision loss from birth through age five. Home-Based Services The school's Early Intervention Program offers home-based services where specially trained teachers of the visually impaired (TVI) work one-on-one with parents and their child who has impaired vision. The main goal is to design and implement a plan that allows the child to become as independent as possible from the earliest moments. Some of the specific goals for children include: visually exploring their surroundings, visual shifting of attention, tracking objects horizontally and vertically, as well as demonstrating an interest in the world around them.1 TVIs are also responsible for assisting families in gaining a deeper understanding of their child's disabling condition. They conduct vision and/or special instruction sessions with the parent and child, giving the parent the opportunity to participate in each lesson and then to receive immediate feedback. Teachers and families work together on improving the child's functional vision, as well as his/her basic skills development. Center-Based Services Our school currently has eight classrooms with three different environments: self- contained, integrated and toddler. The specially trained staff is the school's most valuable resource. Classroom teachers and therapists provide instruction and modification of the preschool curriculum for children with vision impairments. Some of the tools teachers use to improve a child's visual functioning include light boxes to work on visual tracking, slant boards to improve the angle of an activity presented, as well as modified images that are high contrast, bold and uncluttered. TVIs in preschool classrooms work on more advanced vision goals with children, focusing on vision skills, including: demonstrating an interest in books/pictures, showing an interest in items that move, as well as the matching and sorting of various items.1 Early writing skills can be greatly impacted by a vision impairment, such as the imitation of marks from simple to advanced, tracing over shape outlines/letters, and the copying of letters and symbols.1 Teachers work with students on developing these skills. Some teachers also incorporate sensory stimulation activities into their curriculum to increase the sense of touch by children who are visually impaired. The goal of sensory integration is to increase tolerance of a variety of textures/objects, so that children can explore the environment with a greater sense of control over their hands and body. Some items used in these activities include rice tables, all types of water activities, hard or soft clay, and even sand, as well as art materials. The program is successful due to the ongoing communication both within and beyond the classroom. Teachers act as liaisons among parents, school personnel and outside agencies to arrange evaluations and future educational placements. Educators report and modify Individual Education Plan mandates for each child to reflect his/her learning needs. Finally, all members of the child's educational team work with youngsters in the least restrictive educational setting possible to increase opportunities for children with disabilities to learn alongside children without disabling conditions for the most enriching educational experience available. Program Advantages The three different types of classroom settings have considerable advantages for the population they serve. The self-contained classroom offers extensive educational support services for children with significant developmental and cognitive needs. The toddler room offers a half-day program that makes the transition into a preschool classroom setting easier for three-year-olds. And the preschool offers an integrated classroom environment in which children with vision impairments are taught in an inclusive setting that is diverse and stimulating. Affording children with vision impairments the opportunity to learn alongside their sighted peers encourages children with vision loss to master their developmental milestones at an earlier age. Overall, The Lighthouse International School offers a variety of services and educational opportunities for children with visual impairments, from infants to preschoolers, equipping them with the skills and confidence they will need to fulfill their greatest potential. Reference 1 Anderson, S., Boigon, S., Brown, D., Davis, K., Methvin. J., & Simmons, V. (1991) The Oregon project for visually impaired and blind preschool children: Skills Inventory, 5th ed. Medford, OR: Jackson Education Service District Kathy Boisvert, EdD, Integrated Preschool Teacher, The Lighthouse International School The Lighthouse That Guided My Way Battia Scharf Looking back 29 years, from my position today as the Professional Director of three branches of ELIYA (the Israel Association for the Advancement of Blind and Visually Impaired Children), there is much to be said about the Lighthouse that guided me throughout the years. I began as a young teacher, just out of college, at the Lighthouse Child Development Center (CDC) in 1971. Louise Hodell, the Director then, spent a great deal of time training me. Her supervision provided inspiration and encouragement to develop and grow as a creative teacher of preschool children who are visually impaired. Louise's warm and encouraging personality, along with her insight, organization and enthusiasm, became a model for me as a young director later on — and to this day. The outstanding professional consulting staff at the CDC enriched my professional knowledge and gave me the basis for understanding the development of young children with vision impairments, which guides me today. And the in-service training provided by the consulting staff became a model I use at ELIYA. In 1974, when I became the Director of the CDC, it was Arlene R. Gordon, then the Associate Executive Director of the Lighthouse, who never ceased to challenge my ideas and decisions in our supervisory meetings. Discussions with her only sharpened my ability to analyze situations, developed my confidence in the professional decisions I needed to make and instilled in me the belief that "the sky is the limit." Both her personal example and her joy in taking part in creative ventures have remained a source of inspiration for me. Arlene traces the early days of Lighthouse children's programs in her article beginning on page 2. My Move to Israel I left for Israel in July of 1979 with a blessing from the Lighthouse, a suitcase laden with professional and administrative knowledge, and a dream to set up a center for visually impaired preschoolers. The day the movers came to pack, I was still busy recording material for a book, which I was writing with the late Shulamith Kastein, the language consultant at the CDC, and Isabelle Spaulding, a senior teacher at the CDC. The Lighthouse supported this project by transcribing all the material we recorded. The book was published in 1980 under the title, Raising the Young Blind Child: A Guide for Parents and Teachers. My first three years in Israel were spent setting up a unit for children with vision impairments at the Child Development Center of Sheba Hospital. I had been asked to head this unit while I was still in the US. Word got to the CDC at Sheba Hospital that the Director of the Lighthouse CDC was about to leave for Israel — what a good recommendation and a perfect background! Later on, when the unit at the Sheba Child Development Center closed, disappointed parents set up a parent's organization and named it ELIYA, to assure that their children receive the care they need throughout their development. And in 1982, some of these parents approached me to help establish a program for six visually impaired toddlers. And so, with those blessings I received when I left the Lighthouse, the encouragement to pursue my dreams and the confidence to believe the "the sky is the limit," we (a group of volunteers, parents and professionals) set up a preschool in a tiny house we rented. Since then, ELIYA has grown to become a world-renowned program for preschool children with vision impairments. Today ELIYA has three branches: Petach-Tikva, serving the central part of Israel, with 40 children, housed in a specially designed building, with a playground and hydrotherapy pool Beer-Sheva, serving the southern part of Israel, with 35 children Jerusalem, serving the eastern part of Israel, with 15 children (we hope to move to larger quarters next year, enabling an increase in enrollment) The center-based programs include: day care, six days a week for toddlers functioning close to age level, and for multi-handicapped children (1-3 years old); a preschool program with partial integration for 3-4 year-olds; and an infant\parent program (from birth through 12 months). All these programs are run by special education teachers and a professional staff of physiotherapists, occupational therapists, language pathologists, low vision teachers and music therapists. Special emphasis is given to support parents through individual and group support services. ELIYA also provides: special programs, including hydrotherapy, therapeutic riding, music and Shiatsu - toy lending library for parents - holiday and summer day camp program for school-age children - four-day family summer holiday program consultation and training for parents and professionals The joy and fulfillment I have experienced working with children who are visually impaired during these 35 years have had a great impact not only on the development of ELIYA, but also on the growth and development of my own family, including my dear husband, children and grandchildren. One can definitely say that the light shone from Lighthouse International has provided guidance, direction and hope for so many. I want to express my gratitude and sincere congratulations for continued success. Battia Scharf, Professional Director, ELIYA (Callout) The outstanding professional consulting staff at the CDC enriched my professional knowledge and gave me the basis for understanding the development of young children with vision impairments ... The in-service training provided by the consulting staff became a model I use at ELIYA. The Evolution of Pediatric Low Vision Testing Michael Fischer, OD, FAAO Examination techniques for assessing children with low vision have evolved dramatically over the past 50 years. As our understanding of visual development and visual function has increased, better testing procedures have been incorporated into the exam to allow more accurate assessment of children's vision at all ages. In the early days of low vision examination here at the Lighthouse, testing the visual function of a child was more qualitative than quantitative. Evaluating an infant's vision was often merely noting if the child could fixate and follow a target, or respond to an optokinetic drum. But it was also a challenge to examine a toddler or preschooler with low vision. Eleanor E. Faye, MD, one of the pioneers in low vision care and the Director of the New York Lighthouse Low Vision Service for three decades, recalls the difficulties in examining preschoolers, "Vision in those days was recorded as 'TYTT' (too young to test) up until about age four, when kids learned the alphabet. We would estimate vision with different sized balls that we rolled around the floor, and then simple objects like keys or coins. It was hit or miss." Appropriate test materials did not exist for examining young children with reduced acuity. Dr. Faye notes, "There were symbol cards, but the (American Optical) card was totally outdated with items like button shoes and sailboats, which our population had never seen." Then, in the late 1950s, Dr. Faye and Charles Koehler, also from the Lighthouse, created the "Apple, House, Umbrella" test. Dr. Faye described the process of developing the test, "At that time, Schering Drug Company printed a small pediatric vision card, which was made up of the apple, house, umbrella and one other symbol. I obtained permission from Schering to adapt their symbols for pediatric low vision testing. … Charlie (Koehler) and I made various sized copies of the symbols and set about testing them against Snellen letters up to the 200 size." Dr. Faye found that correlating the symbols with standard Snellen letters was a bit of a challenge. She and Charles Koehler enlisted the help of Dr. Arthur Linksz, a Czech refugee and an ophthalmologist who was an expert on aniseikonia and geometric optics. "(Dr. Linksz) sat with us and helped us figure out how to correlate the various figures with their Snellen equivalents. … When we had the design established, we took the cards to the Shield of David, a school for children with learning disabilities. First we taught a class on the symbols and then on standard Snellen letters. We ran over 100 tests to try to standardize our symbol sizes. It took about a year, but we finally published them as flash cards first, then later as a small single test card." With the introduction of the test, Dr. Faye and the Lighthouse proudly announced that acuities could be obtained in children with low vision as early as age 22 months. The Lighthouse Apple, House, Umbrella test became the standard for testing young children for many years. It was almost 20 years later before the next significant change in the symbol test design was introduced. In 1976, Dr. Lea Hyvδrinen, a pediatric ophthalmologist from Finland, designed the LH optotypes (after her initials), which eventually came to be known as the Lea Symbols. The Lea symbols include an apple, a house, a circle and a square, which are calibrated against the reference optotype of Landolt C. An important feature of the Lea symbols that differs from the Lighthouse test is that the symbols blur equally — all four shapes blur to a circle. As such, when the acuity threshold is reached and the child is no longer able to distinguish the shapes, all of them may be called a circle. Dr. Hyvδrinen went on to develop a series of tests, the Lea Test System, for evaluating children in different age groups. While the use of symbols allowed for measuring acuity in some toddlers and preschoolers, up through the mid 1980s, there was still no good clinical test for evaluating the acuity of infants or of children with the inability to respond to a test that required identification of a target. Then, in 1986, Drs. Davida Teller and Velma Dobson and their research team at the Department of Psychology, University of Washington, introduced the Teller Acuity Cards, which utilized the concept of preferential looking. The cards each have a set of black-and-white stripes placed on one side against a contrasting gray background, with no pattern on the other side. The stripes get narrower (and the spatial frequencies increase) with each consecutive card. The concept is that, if the child can see the pattern, he or she will prefer to look at the pattern (versus nothing), and when the pattern becomes indistinguishable from the gray background, the child will no longer display a preference. Many researchers, including Dr. Luisa Mayer at Harvard University, worked to create norms for the test, which demonstrated the development of subjective visual acuity during the first few years of life. The Teller Cards were the first test that allowed clinicians to measure the acuity of infants and nonverbal children. Other tests utilizing preferential looking have since been introduced, including the Lea Gratings and the Cardiff Acuity Tests. Along with these changes in acuity testing have come better methods for evaluating a child's color vision, contrast sensitivity and visual field. These and other techniques have made it possible to more accurately assess the visual function of all children. But even with these improved tools, testing children with low vision can still be a challenge. Issues such as variable visual attention (often associated with cortical vision impairment) and eccentric fixation often require the pediatric low vision doctor to modify testing techniques further in order to obtain information. And testing the child with low vision often takes more time. However, my experience has been that parents want to understand how their child is seeing and truly appreciate any information they receive. And of course, when children get older, the introduction of low vision devices can help to improve a child's function and independence. We have certainly come a long way from "TYTT"! Michael Fischer, OD, FAAO, Director of Low Vision Services, New York City, Lighthouse International Optical Devices: Are We There Yet? Anne Corn Can a child with low vision truly be visually independent? Can he see a chalkboard from his seat in a fourth-grade class? Can she read a standard print text in 9th grade? Can he read a street sign before crossing a four-lane street? For many children with low vision, the answers to these questions are a resounding "yes." A Brief History Since the 1950s when the first low vision clinics began to dispense individually prescribed optical devices, children with low vision have been given opportunities to access the visual environment. Some children can add a few options for seeing images for a short duration, e.g., viewing an enlarged photograph or reading a menu item; others may use devices to access nearly every visual task they wish to perform, from reading standard textbooks to even driving a car. Over the years, more and more children have received optical devices and instruction in their use. Children who become proficient with optical devices are given more options to see what they want to see — and when they want to see it. They do not need to wait for near vision materials to be enlarged, and they're able to see objects and scenery at a distance that provide information and aesthetic beauty, respectively. In the 1980s, there was a new focus on providing optical devices to children who could benefit in school and home communities. Clinical services that had been more readily available for adults became available for children. Educators began to learn how they could provide instruction in the use of optical devices and they developed position papers and documents that spoke of the need to bring instruction into educational programs. Educators and parents also began to realize that the provision of large print as a sole reading medium could be restrictive in a child's overall access to visual information. In the 1990s, more children with multiple disabilities and preschool children began receiving clinical low vision evaluations and optical devices. Experiences with these children led to increased knowledge about teaching optical concepts and skills that are a prerequisite to handling a near vision device or focusing a telescope. The Expanded Core Curriculum for Students with Visual Impairments (Hatlen, 1996) included "Visual Efficiency" among the special curricular areas available to all children with low vision and blindness. As this curricular approach has received more widespread adoption in educational programs, the use of optical devices is seen as an important component of visual efficiency assessments and instruction. Moving Forward Advances in technologies have provided for more complex prescriptions that address such visual conditions as photophobia, lowered contrast sensitivity and visual field restrictions. Technical advances have also provided for more lightweight devices — and devices that are far more cosmetically acceptable than in years past. In the last decade, there have also been more statewide programs that use educational funds to ensure the provision of optical devices for children. These have been initiated through universities, special schools for students who are visually impaired, medical centers and state departments of education. Textbooks, federal policy guidance papers and administrative guidelines for programs have included content and provisions for optical devices. In recent years, there has also been more research that explores the impact of optical devices on children's literacy skills. The psychological and social benefits of optical devices have also been considered favorably. Challenges Remain And yet, while more children are receiving prescribed devices, there are still too many others who are not yet referred for clinical low vision evaluations, are relying on large print as their only reading media, or are waiting for funding to give them what today should be considered a minimal standard of care. In the future there must be a way to respond to the barriers that limit children's access to optical devices and instruction in their use. Until then, the affirmative answers to the questions posed at the beginning of this article will not apply to all children with low vision. Every child with low vision has a right to receive greater access to the visual environment. Optical devices provide such access. Reference Hatlen, P. (1996). The core curriculum for blind and visually impaired students, including those with additional disabilities. RE:view, 28, 25-32. Anne Corn, Professor of Special Education for Visual Disabilities, Peabody College, Vanderbilt University Tracing the Development of the Parent Movement Susan LaVenture The National Association for Parents of Children with Visual Impairments (NAPVI) is honored that as part of its Centennial celebration, Lighthouse International is recognizing the importance and development of our association as we celebrate our 25th anniversary. On the Home Front Parents have played a major role influencing the creation of monumental legislation effecting positive policy changes in education, health and rehabilitation services. For example, on the national level in the United States, parent leaders from NAPVI, in collaboration with other leaders from the disability movement, were the driving force behind the creation of key legislation and advocating for the passage of the Americans with Disabilities Act (ADA), which recently celebrated its 15th anniversary. Additionally, the Reauthorization of the Individuals with Disabilities Education Improvement Act (IDEIA) 2004, which was originally enacted over 25 years ago, is the special education law in the US that entitles students with disabilities to receive a free, appropriate public education at no cost to parents. The implementations of both of these laws have impacted the direction and livelihood of hundreds of thousands of people with disabilities to gain freedom and independence through access in countless ways — from education to technology, housing, transportation and employment. Advocates in the United States have been pioneers in the world for ensuring these federal disability policies came to fruition. The US as Role Model Internationally, governmental leaders, parents and professionals in the disability field look to the history of US disability policies as an inspiration to learn from our successes and challenges for their creation and implementation. Furthermore, our parent and disability movement has spawned enough interest from onlookers that other countries have taken our model to introduce similar concepts and structure for the development of parent associations. These associations help pave the way to effect positive change of new disability policies that will impact their citizens. Parents continue to forge ahead in advocating on the national level to be watchful of developments with the ever-changing policies, in tandem with raising their children who are visually impaired. Reaching Out NAPVI is dedicated to giving parents support and providing parent education through workshops, conferences, publications, mentors and connecting them with vital information and resources for their children who are visually impaired, including those with multiple disabilities. Since its founding by parents of children with visual impairments, with initial support from the American Foundation for the Blind, NAPVI has conducted outreach to families of diverse cultural and economic backgrounds in both rural and urban areas within the United States — from making a home visit, and offering support and information to a Pennsylvania Amish family whose baby is blind with multiple disabilities, to creating a vibrant network of families living in the New York City metropolitan area that have opened a NAPVI branch office in the Bronx. NAPVI's outreach to families has expanded internationally. We consult on the development of similar parent associations in countries such as Israel, Australia, Brazil, Canada, and offer expertise and support in regions of Eastern Europe, South America, Africa and Asia. NAPVI, through support of the Hilton-Perkins International Program and LARA MARA of Brazil, created the first forum for parents on the international level by developing a program and a voice for parents at the 10th World Conference of the International Council for Education of People with Visual Impairment (ICEVI) to be convened in Brazil in 1997. As the formation of international parents associations has developed, NAPVI has worked with parent leaders of these associations to continue the momentum by convening at the ICEVI World Conference in the Netherlands; and with plans for a half-day session, "Parents Mobilizing Parents for Advocacy," at the upcoming conference, "Achieving Equality in Education: New Challenges and Strategies for Change" in Malaysia in July 2006. NAPVI joins the Lighthouse in celebrating great progress within the parent movement during the past 25 years, and congratulates Lighthouse International for its 100 years of service to people who are blind and partially sighted, from birth throughout the lifespan. We look forward to what will unfold during the next century. Susan LaVenture, Executive Director, National Association for Parents of Children with Visual Impairments (Callout) Internationally, governmental leaders, parents and professionals in the disability field look to the history of US disability policies as an inspiration to learn from our successes and challenges for their creation and implementation. Education of Children Who Are Blind and Have Low Vision in the Developing World: A Case for Hope or Despair? Larry Campbell Today, it is generally accepted that only 10% of children who are blind or have low vision in the developing world have access to education. Contrast this with the estimate of 2-5% that was being used when I began my career in international development nearly three decades ago, and we have just cause for despair. After all, if you were one of these children hoping for education and knew that it took three decades to achieve a 5-8% point gain, would you feel encouraged? Despite these rather discouraging figures, I remain optimistic as we look ahead. It is at this point that the reader might conclude that the author has exceedingly low expectations. I hope that's not the case and you will read on and look below the surface of these numbers for what I view as some encouraging signs. While the increase in the number of children reached over the past three decades is appallingly low, there are a number of important changes underway that I believe have the potential to dramatically accelerate access to education in the developing world in the decade ahead. Space does not permit an exploration of all of these changes, but the following three, I believe, will contribute to a significant acceleration in the pace of change in the next ten years. Consumer and Parent Involvement When I began my career, consumer and parent involvement was token at best. Today, the situation has changed dramatically and we all benefit from that change. In many developing countries, people who are blind or have low vision and parents are increasingly becoming an organized and effective force whose influence on governments is starting to pay dividends in the form of better public policy and increased services. The power of the consumer should not be underestimated, and the ranks of activist consumers are growing as they build from one success to the next. These are forces for change that deserve recognition and support, and contribute to my feeling that there are brighter days ahead. The speed of that change will, I believe, be linked in large measure to our ability to stand beside and support the potential power of this movement. Changes in Public Policy Thirty years ago, education for children with vision impairment was a privilege afforded to a chosen few; sadly today, in many places, this is still the case. However, government policy makers are increasingly acknowledging a "rights-based" approach that has been encouraged by UN accords such as the Convention on the Right of the Child, the Dakar Declaration and the currently emerging "Convention on the Rights of Persons with Disabilities." In short, "disability" is on the radar screen of politicians in a way that it has never been there before. Smart politicians and policy makers have learned that "nothing about us without us" is serious advice that should only be ignored at ones own peril. The "Education for All" initiative launched by The World Bank, UNESCO and UNICEF has also given much greater impetus to our cause. Perhaps the most encouraging sign in recent years has been the decision by The World Bank to focus special attention on integrating disability into its broader development programs. This effort may do for the education of children with impaired vision what The World Bank emphasis did for "women and development" and gender inequities 30 years ago. This new rights-based approach, combined with the pressures that donors are placing on governments to include the needs of disabled persons into all development efforts, is an encouraging sign. Collaboration There were few organizations with an interest in the needs of children with vision loss in the developing world 30 years ago, and those that were involved made little effort to collaborate. That all changed in 1980 with the creation of the Partnership Committee that was formed to address this inadequacy. While it did not happen overnight, today, active collaboration between international organizations is more the "rule" than the "exception." The three major umbrella organizations concerned with vision impairment; the International Agency for the Prevention of Blindness (IAPB), the International Council for Education of People with Visual Impairment (ICEVI) and the World Blind Union (WBU) have all come to see the value of collaboration — and are turning that view into action. The Vision 2020 Program is probably the best example of how collaboration can lead to significant measurable change. A parallel initiative that will focus global attention on the challenge of achieving educational equity for children who are blind or have low vision in the developing world is likely to be launched in 2006 under the umbrella of ICEVI with the goal of educational equity for all. So as I reflect on "then and now," I remain optimistic that these and other factors are contributing to building a momentum; a momentum that in the decade ahead will increase and result in significant progress in achieving our goal of "educational equity" for all children with vision impairments, no matter where they live in this world. While some may choose to view the glass as half empty, I believe there is real reason to conclude it as half full — and filling fast! Larry Campbell, President, Overbrook International Program and ICEVI (Sidebar) Check out the updated "Assessment Compendium: Instruments for Assessing the Skills and Interests of Individuals with Visual Impairments" at www.visionconnection.org, a one-stop accessible resource on vision impairment and vision rehabilitation. The Evolution of Evidence-Based Practice in Education: What Do We Know, and How Do We Know It? Kay Alicyn Ferrell, PhD Our field — the education of children with vision impairments — has often operated "by the seat of its pants." In spite of our historical leadership in education — the first specialized schools in the early 1800s, the first public school classes in the early 1900s, the first models of inclusion back in the 1950s — the field has not been able to build the research foundation that supports what it does. We have always followed what we consider to be best practice, of course; but sometimes we do so more from folklore than from evidence. The No Child Left Behind Act of 2001 (NCLB) challenges us to document what we do and to demonstrate that it works. NCLB uses the term "scientifically based research" or "scientifically based reading research" 119 times. It defines "scientifically based research" as "research that involves the application of rigorous, systematic, and objective procedures to obtain reliable and valid knowledge relevant to education activities and programs," including research that: (i) employs systematic, empirical methods that draw on observation or experiment; (ii) involves rigorous data analyses that are adequate to test the stated hypotheses and justify the general conclusions drawn; (iii) relies on measurements or observational methods that provide reliable and valid data across evaluators and observers, across multiple measurements and observations, and across studies by the same or different investigators; (iv) is evaluated using experimental or quasiexperimental designs in which individuals, entities, programs, or activities are assigned to different conditions and with appropriate controls to evaluate the effects of the condition of interest, with a preference for random-assignment experiments, or other designs to the extent that those designs contain within-condition or across-condition controls; (v) ensures that experimental studies are presented in sufficient detail and clarity to allow for replication or, at a minimum, offer the opportunity to build systematically on their findings; and (vi) has been accepted by a peer-reviewed journal or approved by a panel of independent experts through a comparably rigorous, objective, and scientific review. (20 USC 7801, Sec. 9101(37)(B)) The federal government has even created a What Works Clearinghouse (www.whatworks.ed.gov) to evaluate existing research to determine the most effective educational practices that meet these specific evidence standards. A Look at Literacy Research: Evidence Is Scarce The National Center on Low-Incidence Disabilities recently analyzed 40 years of literacy research involving children with visual impairments, applying the same standards of evidence utilized by the What Works Clearinghouse. We identified 652 articles that were published after a peer review, meaning that these articles had been judged to be worthy of publication by at least two individuals working independently of each other. When examined more closely, only 136 articles actually involved literacy research with children who had vision impairments. Another 97 had no control or comparison group, or no specific strategy or procedure was investigated (see paragraph iv in the definition). A few articles could not be located, resulting in only 32 research studies that examined literacy in children with visual impairments. Of those 32 studies, only one-half (16) met the definition of scientifically based research. We could draw few conclusions from these 16 studies, because no two studies utilized the same procedures to examine the same outcomes. The evidence may indicate that, in general, children who used low vision devices seemed to do better on various reading measures after training, and braille readers seemed to do better if they received training on the braille code and the mechanics of braille. Some of the evidence actually contradicted everyday practice — but the evidence was so limited (based on only one study) that it is hard to draw any conclusions. The evidence for other educational practices is likely to be just as limited. Research on children with vision impairments is difficult to do, largely because they are geographically dispersed over large areas, and because they are extremely heterogeneous (no two children, even with the same eye condition, have the same behaviors). Traditionally, educational research has been conducted by college and university faculty who prepare teachers and orientation and mobility specialists for the field, but many of these faculty members operate under the constraint of decreased budgets for higher education, and they find themselves teaching more classes and investing time in grant writing and student recruitment. Under these conditions, it is difficult to implement a research program, and the research base has suffered. As special education becomes more "generalized" and, as technology promises to level the playing field, we find ourselves under increasing pressure to justify specialized services for students with vision impairment. Yet, we have little evidence that what we do makes a difference. Many of the strategies and interventions utilized with students with vision impairments come from the gut — they feel right, they seem to make a difference, they are intuitively effective, and they make sense. To move toward best practice, we need to build a culture of healthy skepticism: What do we really know? How do we know it, really? The answers to these questions hold the promise and the future for the next generation. Kay Alicyn Ferrell, PhD, Executive Director, National Center on Low-Incidence Disabilities, University of Northern Colorado (Callout) We have always followed what we consider to be best practice, of course; but sometimes we do so more from folklore than from evidence. The No Child Left Behind Act of 2001 (NCLB) challenges us to document what we do and to demonstrate that it works. (Sidebar) Lighthouse International is able to provide EnVision thanks to the support of caring people like you. You can help support this and other Lighthouse programs and services by making a donation today at www.lighthouse.org/donate or by calling (212) 821- 9437. Thank you! EnVision Cynthia Stuen, DSW/PhD Senior Vice President for Education and Service Laurie Silbersweig Editorial Manager, Marketing Photos: Robert A. Lisak, Jaine Schmidt EnVision Editorial Board Mary Ann Lang, PhD, Chair Darren Albert, MD Kathy Boisvert, EdD Tana D'Allura, PhD Michael Fischer, OD, FAAO Janice O'Connor, BA Norman B. Medow, MD, FACS Karen Seidman, MPA Cynthia Stuen, DSW/PhD Glenda V. Such, MEd This newsletter is available in alternate formats and on our Web site: www.lighthouse.org. Lighthouse International Tara A. Cortes, PhD, RN President and CEO Lighthouse International is dedicated to helping people of all ages overcome the challenges of vision loss. Lighthouse International The Sol and Lillian Goldman Building 111 East 59th Street New York, NY 10022-1202 Tel: (212) 821-9200 (800) 829-0500 Fax: (212) 821-9707 E-mail: envision@lighthouse.org www.lighthouse.org © 2006 Lighthouse International