EnVision A publication for parents and educators of children with impaired vision Spring 2004 Volume 8 Number 2 Encouraging Children's Independence While Ensuring Safety: A Fine Line Mary Ann Lang, PhD The question of how do we keep our children safe implicates all aspects of our youngster's lives as they navigate the maze of new experiences encountered on the path to adulthood. Allowing our children to take part in events that may be considered "unsafe" is especially daunting to parents. Should we allow our children to partake in sports? When do we let our children travel independently? Such questions have always plagued parents for they represent the crux of the conflict between encouraging our children's independence and growth while at the same time ensuring their safety. These questions are especially relevant to parents at this moment in time, given today's continued elevated threat of terrorism in the United States and other nations around the globe. In this issue of EnVision, we explore safety and how it affects youngsters who are visually impaired, as well as the parents and educators who ensure children's safety. Martin Yablonski provides an indispensable guide to emergency preparedness with some special considerations for children with vision impairments. Dr. Karen Wolffe examines how young adults transition from school transportation to public transportation and how to manage this shift safely and effectively. Glenda Such relates her perspective on safety and cane use for individuals with low vision and encourages cane use, even in individuals with significant usable vision. And, lastly, in recognition of the American Academy of Ophthalmology's observance of April as Sports Eye Safety month, EnVision applauds the efforts of the many organizations and individuals who promote eye safety in sports. Protecting athletes of all ages, especially children, from preventable eye injuries is an attainable goal to which we can aspire. To support the AAO's initiatives, we feature an invaluable article on how to prevent sports eye injuries by Dr. M. Bowes Hamill, MD, Chairman of the Academy of Ophthalmology's Eye Health and Public Information Task Force. In This Issue - Protective Eyewear Prevents Eye Injuries - Be Prepared: Keeping Your Guard Up for You and Your Children - Transitioning Young Adults from School to Public Transportation - Low Vision and Safety through Cane Use April 2004 is Sports Eye Safety Month Protective Eyewear Prevents Eye Injuries M. Bowes Hamill, MD Americans love their sports as well as other indoor and outdoor activities. These pastimes provide wonderful opportunities for healthy exercise and great memories. But for some, especially for children, preventable eye injuries can spoil such reminiscences. Approximately 42,000 sports-related eye injuries occur every year in the United States. More than one-third of the victims are children. In fact, sports represent the number one cause of eye injuries in children under the age of sixteen. Injuries range from abrasions of the cornea and bruised eyelids to internal eye damage, such as retinal detachments and internal bleeding. Many of these injuries lead to vision loss and permanent blindness. The sports with the highest risk - for which eye protection is available - include basketball, baseball, hockey, football, lacrosse, fencing, paintball, water polo, racquetball, soccer and downhill skiing. In baseball, for example, most eye injuries result from the ball hitting the eye. Batters are the most common victims, though pitchers and outfielders can also be hurt. In basketball, most eye injuries result from the eyes being poked by fingers and elbows. Wearing Protective Eyewear Athletes participating in high-risk sports - especially young athletes - should wear appropriate sport-specific protective eyewear as recommended and properly fitted by an ophthalmologist or other eye care professional. The good news is that athletes today can choose from various types of lightweight and sturdy protective eyewear that look and fit better than those used in the past. Eyewear that is properly fitted and consistently worn does not hinder performance in any way, and can prevent 90 percent of sports eye injuries. Many famous athletes, including NBA All-Star Kareem Abdul-Jabbar, NFL Hall of Fame Eric Dickerson and MLB Hall of Fame Johnny Bench, have excelled in their respective sports while wearing protective eyewear. In Canada, eye injuries decreased by 90 percent after certified full-face protectors attached to headgear were made mandatory in organized amateur hockey. The lenses of the different types of protective eyewear should be made of polycarbonate, which is 20 times stronger than the lenses of typical eyewear. Polycarbonate can withstand a ball or other projectile traveling at 90 miles per hour. Contact lenses offer no protection, and street wear glasses are inadequate to protect against any type of eye injury. Special consideration needs to be given to athletes with good vision in only one eye, or with a history of eye injury. Functionally one-eyed athletes (those whose best-corrected visual acuity is less than 20/40 in the poorer-seeing eye), or those who have had previous eye injury or surgery, should never participate in boxing or full-contact martial arts, for which no adequate eye protection is available. For sports in which a facemask or helmet with eye protectors is required, functionally one-eyed athletes should also wear sports goggles with polycarbonate lenses to ensure adequate protection. The helmet should fit properly and have a chinstrap. Parents' Role in Sports Eye Safety Because many children's sports leagues, schools and teams don't require children to wear eye protection, parents must insist that children wear eye protection every time they play. In addition, they should set a good example by wearing eye protection themselves whenever they play sports. Parents can get involved at the local level and help pass ordinances that require children under the age of 16 to wear batting helmets with protective face shields when playing baseball, as the City of Baltimore did recently. Also, they can work to mandate the use of softer baseballs, which are available (and would cause fewer head injuries), but are generally not used. Similar requirements could be applied to other sports as well. The key is to take active, preventive steps to ensure that we all protect our most valuable sense - sight. M. Bowes Hamill, MD, Associate Professor of Ophthalmology, Baylor College of Medicine; Spokesperson, American Academy of Ophthalmology and Eye MD Association; Chairman, Eye Health and Public Information Task Force, Academy of Ophthalmology Be Prepared: Keeping Your Guard Up for You and Your Children Martin Yablonski, MEd, COMS, TVI No one could have predicted 2003 - firestorms in California, electrical outages on the East coast, hail in Los Angeles, earthquakes, horrific heat waves in Europe, student shootings and continued terrorism through out the world. In the same vein, we will not be able to foresee if terrible events will happen in the future. If a disaster does happen, we won't know if we or our children will be affected. Despite such uncertainty, we still need to prepare - and be prepared at all times - in case of catastrophe. Experiencing the New York City Blackout Even with planning, I, for one, was not prepared for the blackout of 2003 in New York City this past August. Along with 25 of my colleagues, I slept on my office floor with no air conditioning. I was only able to get home the next day. While we had food, shelter and companionship, I did not have my daily medications, a change of clothes, a toothbrush or extra cash. Luckily, our chef was also among those stranded. Since we have gas stoves in the cafeteria, we ate well starting with melting ice cream around 5 o'clock pm. I did have a flashlight, a whistle and a wind-up radio in my office so I was able to listen to the news media. I had a cell phone but it worked only intermittently. I was glad to have the flashlight as I was shocked at how dark it gets at night in the city when there are no neon signs, streetlights or traffic lights to illuminate the sky. I experienced the blackout first hand. During and immediately after this incident, I realized even more strikingly the need to prepare thoroughly in the event of calamity. Here are some guidelines. Things to Do Now 1. Set up a system for contacting and meeting family and friends. Prepare a phone tree detailing who will call whom. Your system for meeting family and friends should include different locations - one close to home or office, if you just need to evacuate a building, and another farther away in the event of a major disaster. Understand that cell phones often work sporadically when everyone is attempting to use theirs at the same time. Not being able to check up on others or to let them know you are okay creates another layer of worry for everyone. A phone tree or call central where everyone phones to let one person know they are safe may avoid additional anxiety. 2. Have a plan. In the blackout, many people immediately left their offices and started home without knowing how long it would take. For some, it took over 12 hours. Many people got into elevators only to be stuck for varying amounts of time. Know yourself and your responsibilities while balancing this with your health and abilities to make rational decisions. Plan your options in advance. In December of 2003, many of those in Southern California did not have time to think of what they should do when the mudslides began - they waited too long. Do not wait until a disaster strikes in order to decide what you will do. 3. Find a "buddy." In the event of an emergency, buddying up with a friend, neighbor, coworker or family member who knows you well or lives near you can help you both. Plan with your buddy what you would do in the event of a crisis. With the heat wave in Europe this summer, for example, many deaths could have been prevented if buddies had been able to check in to see if older adults were receiving sufficient hydration and calling help if need be. 4. Hide and hold extra cash. We now depend on instant cash from ubiquitous ATM machines, but when the electricity goes out so do the machines. Even if the electricity does not go out, everyone will be trying to use ATMs during an emergency. Be prepared, have sufficient cash funds with you at all times and hide that little bit extra. 5. Carry extras. This includes medications, an extra set of glasses or contact lenses, water, flashlight, etc. Don't forget that disasters often create smoke or polluted air - make sure you have something with which to cleanse your eyes and a face mask. For those with breathing problems, determine in advance a place to go where there will be backup air-conditioning such as a local hospital. If you need oxygen, plan on how and where you will replenish your supply when needed. 6. Keep emergency supplies ready. They should be kept in an easily accessible location so you can grab them and run. Some of the supplies should always be on your person per above (medicines, glasses). Others should stay in your car, workplace and home. The following are suggestions of what you should have ready. - cell phone with battery charger - extra cash - minimum five-day supply of medications - a list of medications and dosages as well as the prescribing doctor's name - list of allergies - statement of blood type - minimum three-day supply of water - minimum five-day supply of prepared foods not requiring refrigeration or cooking - manual can opener - extra glasses or contact lenses - sunglasses - change of clothes - bad weather gear - comfortable shoes for running or moving fast - paper and pencil - hand sanitizers - toilet paper - minimum five-day supply of pet or service animal (guide dog) food - list of emergency contacts in the event you can't remember numbers - list of important phone numbers - doctor, pharmacist, family, friends, religious contacts - flashlight - whistle - health care information - face mask - your plan of action Special Considerations for Children In your planning, keep in mind how your children might react in the event of a disaster and include them in the preparation process. FEMA, the Federal Emergency Management Agency, has a special web site that brings children into the planning process in an interactive manner (http://www.fema.gov/kids/). You may also want to make sure your family's disaster kit includes age appropriate emergency supplies such as: - books and games - a CD player (with extra batteries) and CDs - comfort food - emergency phone numbers - diapers - baby food - pictures of your child and a picture of your child with your family (in the event you get separated) - comb, brush, toothbrush and toothpaste - kids activity kit including a favorite stuffed animal or blanket - juice boxes The Redmond, WA Fire Department has written the following considerations for children in disasters. "During a disaster, children look up to the adults for help. How you react gives them clues how to react. As an adult, try to keep control of the situation. Immediately after the disaster, try to reduce your child's fear and anxiety." To do this: - Keep the family together and make the children feel part of what you are doing. - Talk to your children about the disaster. Be calm and firm telling them what you know and what may happen next. Interact with them on their level and don't forget that they will be getting information from others, the radio and possibly the TV. Let them know the truth and answer all of their questions. - Listen and listen carefully - a cardinal rule with all children. Make sure to involve them and let them know it is okay to express their feelings. - Think of what your child will be afraid of next. - Be aware that, after any disaster, children are most afraid that the event will happen again and that they will get separated and be left alone. - Avoid inactivity, maintain control and make necessary decisions for the child. Special Considerations for Children with Vision Impairments Children with vision impairments need additional considerations in times of emergency. If one of your children is visually impaired, your disaster kit should include items specific to your child's visual needs such as: - an extra cane - low vision devices that your child uses - an extra pair of glasses - bold point pens and bold lined paper - slate and stylus - Braille paper - labeled pictures of your child and your child with the family When necessary, children should be prepared to tell others they have a vision problem and what assistance (if any) they need. In addition, family members should be aware of the following: - A child with partial sight is only going to see part of the situation. Talk and describe the rest to the child. Don't make the child try and fill in the missing blanks themselves. - A child with reduced or no vision may know how to escape in a panic situation, but adults should provide help by guiding and taking the child out of danger in a firm, responsible manner. - Due to the nature of a disaster (wind, fire, smoke, glare), vision can be affected. Assume that the child's vision will be worse and help accordingly. - Make sure your child knows how to seek assistance, how to clearly ask information and how to give instructions in a confident manner. - Make sure your child's eyes are protected. Wearing glasses or wrap around sunglasses will reduce the risk of exposing an eye with some sight to danger. - Keep your child active and involved - listen to them and be partners. It is important to involve children in disaster preparation. If a disaster occurs, take a firm controlling lead and allow children to be participants in your handling of the disaster. Plan how to handle a disaster - do it now, not later. For more information on emergency preparedness, please visit the FEMA (Federal Emergency Management Agency) website at http://www.fema.gov/. Martin Yablonski, MEd, COMS, TVI, Vice President for Direct Service Administration and Clinical Director of Orientation & Mobility, Lighthouse International Transitioning Young Adults from School to Public Transportation Karen Wolffe, PhD One of the most trying transitions young people with visual disabilities face when exiting the public school system is the challenge of finding new transportation modes for traveling to and from work or postsecondary training. Unfortunately, many students and their families come to rely on the transportation means offered by the public school system and don't make adequate plans for future travel needs inherent in an independent adult lifestyle. Ideally, what does a young person with a visual disability need to accomplish before high school graduation in terms of planning for future transportation needs? Failing good in-school preparation, some alternatives to simply staying at home do exist. While youngsters are still in school, working closely with an Orientation and Mobility (O&M) Specialist is crucial. In addition, practicing learned traveling skills in the community with family and friends, as well as independently, is key to providing young adults with the confidence they will need while traveling autonomously. When negotiating for O&M skills training on a student's Individualized Education Program (IEP) plan, parents and students should request training in the community on a variety of routes using multiple types of transportation - buses, trains, taxis, shuttles, paratransit and so forth. The greater the familiarity a student has with different travel options, the better prepared the youngster will be to use available services well. Driving as a Rite of Passage Although driving a car is rarely an option for young people with severe visual disabilities, that does not mean that they shouldn't be familiar with cars and the rules of the road. In fact, it behooves them to take, at a minimum, the classroom portion of a standard driver's education course. Blind and low vision students will often be passengers in others' personal vehicles and they need to know what is transpiring even though they are not driving. Likewise, they should know basic automobile care and maintenance - for example, how to change a flat tire, fill up the gas, clean the windshield, add oil and washer fluid, etc. When riding with friends, one of the ways a youngster with a visual impairment can repay the favor is to gas up the friend's car. Finally, it is critical that they know where they are going and how to get to and from their final destination so that they can share directions intelligibly with the driver. Some sighted drivers may need more than a street address. As a result, riders will need to know not only street addresses but also routes and significant landmarks to help the driver arrive at their final destination. For parents, it is essential to understand that learning to drive, with the resultant freedom this engenders, is an important rite of passage for teenagers in western society. Students with visual disabilities need to have an alternative rite of passage awaiting them. Suggestions include saving for a trip across country - or, on a smaller scale, across town - to visit a friend or relative independently by bus, train or airplane. If parents are assisting a sighted sibling to acquire a vehicle or to pay for insurance so that she can drive a family vehicle, they might want to consider putting a comparable amount of money into a "transportation account" for the child with a visual impairment. These funds could be used for independent travel by taxi, bus, train or another alternative. Evaluating Transportation Options Students with severe visual impairments must understand and accept that it is unlikely they will become drivers. Therefore, they should identify what transportation options are available and evaluate them with respect to convenience, cost and their impact on independence. In addition, they must have the social skills to request rides from others, when appropriate, and reciprocate as necessary. To make good decisions about available transportation, young people may want to chart their options analyzing which travel mode is the most desirable option. A way to facilitate this process is to assign a numerical value to each mode according to the following considerations - cost, convenience and independence - and to then tally the scores for each choice (Erin & Wolffe, 1999). See box "Evaluating Transportation Options" on page 9 for an example of this methodology. Whether a young adult with a visual disability has postsecondary plans to work, study or engage in other activities, she will have to find and use alternatives to the loyal yellow school bus. If a graduate leaves the public school system without the skills necessary to travel independently in the community, she will need to make arrangements either through the local public or private rehabilitation agencies for O&M training, or work with private O&M contractors. Where to Find Help To identify public and private rehabilitation providers, youth and their families can search the American Foundation for the Blind's Directory of Services online at www.afb.org or contact Lighthouse International's Information & Resource Service at 1-800-829-0500 or info@lighthouse.org to inquire about local service providers. Finding local O&M private contractors may be slightly more challenging, but can be accomplished. Oftentimes, the local rehabilitation agencies or Centers for Independent Living will maintain listings of private O&M contractors. Word of mouth is perhaps the most common way to connect with local private O&M professionals. To gain access to this kind of information, young adults can participate in consumer group meetings. The two largest consumer groups are the American Council of the Blind (www.acb.org) and the National Federation of the Blind (www.nfb.org) and both have chapters throughout the United States and Canada. For additional information on transition with transportation issues, please consider reading Transition Issues Related to Students with Visual Disabilities (Erin & Wolffe, 1999). Karen Wolffe, PhD, National Program Associate, Employment and Education, American Foundation for the Blind; Career Counselor and Consultant, Private Practice (wolffe@afb.net, 1-512-707-0525) References Erin, Jane N., & Wolffe, K. E. (1999). Transition Issues Related to Students with Visual Disabilities. Austin, TX: PRO-ED. Evaluating Transportation Options 1. In the column on the left, list all the modes of transportation available for traveling to a chosen destination. 2. Score each method according to cost, time and independence. 1 = an advantage 2 = neither an advantage or disadvantage 3 = a disadvantage 3. Total the scores together for each travel mode and write the total in the column on the right. 4. Choose the type of transportation that has the lowest score. Activity Attending a concert in the park with friends. Cost Time Independence TOTAL Ride with a friend 1 1 2 4 Take a cab 3 2 1 6 Ask parents for a ride 1 1 3 5 Take the bus 1 3 1 5 Low Vision and Safety through Cane Use Glenda V. Such, Med For many people with low vision, using a cane may make them feel they are negating their useable vision. As an individual with low vision, I have often thought to myself "using a cane is really overkill since I can see so much." After all, I can see the "big" things as I get around, so why carry the large white stick? In response to such a question, a person with low vision needs to consider the "little" things that may be missed and evaluate how this impacts safety. Little things - such as the edges of steps, curbs between streets and sidewalks, a hose across a sidewalk, or even a small child who suddenly darts into one's path - can drastically alter a person's sense of safety. Assessing Individual Safety Needs An individual with low vision can learn to use a cane to fit her specific needs. The user may employ a cane in a conventional way in highly unpredictable areas (e.g. streets undergoing construction, or new and poorly lit environments) while using it in a different way in very familiar and safe areas. The number of times a person with low vision will need assistance to ensure safety will depend on the individual's eye pathology as well as personality. Some eye diseases do not affect acuity but may diminish the visual field drastically. As a result, steps, open doors, moving people and even large trash cans can all be hazards to someone walking down a street. Other people may see well enough to travel with ease in bright lighting (during daytime or in well illuminated indoor areas, for example), but will feel unsure in the dark. For some individuals, safety hazards increase exponentially as light diminishes. Tempering Negative Views about Cane Use For a person with low vision, one of the most difficult barriers to using a cane is often the individual's attitude or belief about what a cane represents. Another factor influencing cane use is safety. An individual may realize she will be safer using a cane despite her adverse feelings towards the assistive device. People who have some functional vision may wait a long time before they will go out in public with a cane. Often, a reluctant individual converts to using a cane once she has twisted one too many ankles or even experiences more serious injuries. After such mishaps, a person with low vision may change her attitude about canes and will usually accept the cane as an auxiliary vision tool. I have gone through all these stages myself and have witnessed this happening to countless others. If you yourself have low vision, I would like to challenge you, the reader, to use a cane to prevent the risk of one more twisted ankle, bumped knee or broken leg. If you have a family member or friend who has low vision, or you are a vision professional working with people who have low vision, I urge you to encourage cane use. Requesting Help from Professionals, Family and Friends When beginning to use a cane, a person with low vision should learn what she cannot see while traveling in various environments. A vision professional, such as an Orientation and Mobility Specialist, or anyone with full sight - particularly helpful being someone who is observant by nature - can assist in this endeavor. As the person with low vision walks about, she articulates what she sees while the sighted counterpart checks to determine what was seen without difficulty, what was missed and what was misinterpreted - mistaking a three foot deep hole in the street for a shadow, for example. This exercise can be repeated in a range of settings with various lighting, including at night as well as indoors and outdoors. Once this is completed, it is much easier to figure out why and in what instances or settings a cane is needed. With that knowledge in hand, mobility cane training with an Orientation and Mobility Specialist will teach a new cane user the skills necessary to maintain safety in low illuminated settings and other problematic situations. Any private or governmental agency specializing in vision rehabilitation can direct people to one or more professionals certified to provide this service. Glenda V. Such, MEd, Director of Computer Training Programs, Career Services, Lighthouse International EnVision Cynthia Stuen, DSW Senior Vice President for Education Mary Ann Lang, PhD Vice President for International Programs Sarah Lloyd Director of Educational Publications Photo by: Robert A. Lisak EnVision Editorial Board Mary Ann Lang, PhD, Chair Darren Albert, MD Kathy Boisvert, MA, EdM Tana D'Allura, PhD Michael Fischer, OD, FAAO Janice O'Connor, BA Norman B. Medow, MD, FACS Karen Seidman, MPA Cynthia Stuen, DSW Glenda V. Such, Med This newsletter is available in alternate formats and on our website: www.lighthouse.org. Lighthouse International Barbara Silverstone, DSW President and CEO Lighthouse International is a leading resource worldwide on vision impairment and vision rehabilitation. Through its pioneering work in vision rehabilitation services, education, research, prevention and advocacy, Lighthouse International enables people of all ages who are blind or partially sighted to lead independent and productive lives. Founded in 1905 and headquartered in New York, Lighthouse International is a not-for-profit organization, and depends on the support and generosity of individuals, foundations and corporations. Lighthouse International 111 East 59th Street New York, NY 10022-1202 Tel: (212) 821-9200 (800) 829-0500 Fax: (212) 821-9707 TTY: (212) 821-9713 E-mail: envision@lighthouse.org www.lighthouse.org (c) 2004 Lighthouse International