Sharing Solutions Fall/Winter 2007 A newsletter for People with Impaired Vision and Their Support Networks Getting the Word Out With people living longer and the aging of America's baby boomers, by 2010 -- just three years away -- the number of people age 45 and over who self-report vision impairment in the US is expected to reach 20 million! This compelling statistic makes the need for reimbursement for services and devices that restore functioning for people with vision loss more pressing than ever. Although the Medicare Low Vision Rehabilitation Demonstration project has recently expanded its scope (see page 2), there is still no Medicare coverage for low vision and assistive technology devices -- vital equipment for people with impaired vision. The Lighthouse is advocating for this coverage and participating in aggressive public awareness campaigns emphasizing early intervention, access to services and coverage for equipment so that independent living can become a reality for people coping with the devastating impact of vision loss. To assist in getting the word out, we continue to offer you two free resources, which are part of our national awareness campaigns: a brochure called All About Low Vision and a practical kit called Living Better at Home: A Guide for People with Vision Loss. See page 7 to order these for you or your support group. In tandem, we continue the dialogue started last spring on making home life easier (see page 4); and we've created a new column called Ask the Expert, providing practical tips and strategies to answer your questions. We also feature an article on dry macular degeneration to bring you the latest information on this leading cause of vision loss among older Americans. In our last issue, we focused on wet AMD and the exciting possibilities for treatment on the horizon. Finally, we ask for your advice in our next Coast to Coast exchange (see page 8). What would you tell others who are newly facing vision loss to make their adjustment easier? As always, thanks for sharing and enjoy the newsletter! Carol J. Sussman-Skalka Newsletter Editor Looking for solutions to make your life at home easier? Send us your questions. We'll answer them -- and share your helpful strategies -- in our "Ask the Expert" column in future issues. Update on Medicare Coverage for Vision Loss-Related Services Expanding the Medicare Low Vision Rehabilitation Demonstration Project The Centers for Medicare and Medicaid Services (CMS) recently announced expansion of coverage for the Medicare Low Vision Rehabilitation Demonstration project -- changes that benefit people with impaired vision in six sites within the US. Initiated in 2006, the project is designed to study the impact of Medicare coverage for three providers of vision rehabilitation not previously reimbursed by Medicare: certified vision rehabilitation therapists, certified low vision therapists and certified orientation and mobility specialists who are recognized as providers for the Demonstration project. Note that occupational therapists are already recognized providers under Medicare. The project began in six geographic areas: New Hampshire, North Carolina, Washington State, Kansas, New York City (5 boroughs), and Atlanta, Georgia. Effective immediately, the project is being expanded in New York State, enabling residents of eight more counties (Westchester, Putnam, Dutchess, Orange, Sullivan, Ulster, Nassau and Suffolk) to be eligible for coverage. Additionally, Atlanta residents in 477 more zip codes spanning 31 different counties will be eligible. CMS also revised a rule to increase the number of hours of service a person may receive from a lifetime maximum of nine hours to a more generous 12 hours per calendar year. This change, which will become effective in April 2008, is a major step forward. It takes into account that people with vision loss often need a continuum of services over time due to changes in their visual condition or their life situation (e.g., loss of spouse or close family member). Advocating for Coverage for Low Vision Devices On a similar front, CMS recently proposed a rule that low vision aids/assistive technology devices be excluded from Medicare coverage. People with impaired vision know all too well how important these devices can be in restoring function and helping them maintain both independence and safety. The devices in question range from strong reading lenses and magnifiers to electronic magnification systems (closed-circuit television systems known as CCTVs) and other low vision technologies. They help people read, write, cook and perform many other critical day-to-day tasks. To compound the problem, the cost of some low vision devices is prohibitive, especially for older Americans on fixed incomes. Without CMS coverage, an alarming number of people do not have access to necessary equipment and will be at greater risk for accidents and injuries, further straining our over-tapped healthcare system. Lighthouse International joins other leading organizations like the American Foundation for the Blind in urging CMS to consider the coverage of low vision devices. These devices do not correct visual acuity through the correction of refractive errors; they are prosthetics that replace part of the function of a non-functioning organ. The Congressional Vision Caucus has written a letter to CMS explaining the issues and the importance of instituting coverage. Please stay tuned for information in the next Sharing Solutions for how we can work together on this issue to benefit people with impaired vision nationwide. Stay up to date on important advocacy initiatives Sign Up for a free advocacy newsletter at http://lighthouse.org/advocacylist or call (212) 821-9485 for a copy downloaded from our Web site Understanding Dry AMD By Richard Spaide, MD With age, changes may occur in the macula, a small area in the back of the eye used for detailed vision. These changes are common, fairly specific and associated with a potential for deterioration of vision. Therefore, they're called age-related macular degeneration or AMD. When talking to patients about these changes, retinal specialists use terms to describe various AMD findings. There are two broad categories: dry and wet. Wet AMD refers to an invasion of blood vessels and other cells that can lead to severe, permanent loss of vision. The term dry AMD covers many different manifestations in the eye, including drusen, pigmentary changes and geographic atrophy. Dry AMD precedes wet AMD. Both wet AMD and geographic atrophy, a component of dry AMD, can lead to severe vision loss. Wet AMD and geographic atrophy are sometimes lumped together in a term called late AMD -- also referred to as late age- related maculopathy or late ARM. Here, I will focus on important aspects of dry macular degeneration that are risk factors for progression to late AMD. Drusen Drusen are accumulations of material that build up under the retina and are commonly found in the macular region. These appear as small yellow-white dots or mounds. Contained within drusen are lipids and proteins, some of which have suffered oxidative damage. Also found in drusen are proteins related to the immune system, particularly those from what is called the complement system. We know that a particular type of drusen -- soft drusen -- carries a higher risk of progressing to wet macular degeneration than other types. The more soft drusen present, the greater the risk for progression to wet AMD. Pigmentation Pigmentation in the back of the eye can change with age as well. We are all familiar with spots and splotches of pigment on our skin that appear with age. In the eye, there can be minute accumulations of pigment under the macula. Curiously, these accumulations also carry a risk for progression to late forms of macular degeneration, including the development of geographic atrophy and wet AMD. Geographic Atrophy As people age, it's common to see the loss or withering of some cells in the body. Everyone loses some hair with age -- some people more than others. Just like a person becoming bald, some people lose retinal pigment epithelial (RPE) cells in the macular region. This loss occurs in ovoid shapes with irregular margins that look like countries on a map. For that reason, the areas are called geographic atrophy. As RPE cells grow older, they contain a waste material called lipofuscin. Most of the material in lipofuscin is related to abnormal products formed from vitamin A-related molecules. Ordinarily, these molecules are used by the eye to sense light. However, light can lead to damage of these molecules and the cells in the eye have a difficult time metabolizing these damaged molecules. Instead, waste material is stored in bags distributed throughout the cell. An interesting feature of lipofuscin is that it can be made to glow with the application of certain wavelengths of light. Using this feature, we have developed a method that photographically records areas of geographic atrophy. By eliciting this glow and photographing the result, we can create accurate maps that reflect the health of the cells. What's Ahead On average, people in their 70s develop wet macular degeneration, while the average age for those who develop geographic atrophy is usually in their 80s. With our growing aging population, the number of people with geographic atrophy is on the rise. We have many treatments for wet AMD, but currently we have no treatment for geographic atrophy. Many patients with geographic atrophy have a difficult time reading and seeing fine details. Low vision devices, although sometimes frustrating to use, are usually helpful for patients with geographic atrophy. Unfortunately, geographic atrophy is a "tough nut to crack." When cells want to die, it's difficult to prevent that from happening. While sunlight exposure has not been shown to be definitively associated with wet AMD, there are theoretical reasons to think that light exposure, particularly blue light exposure, may activate lipofuscin in retinal pigment epithelial cells. Activated lipofuscin may then cause oxidative and other forms of damage in the cells, ultimately leading to cell death. Promising research interventions target the processing of vitamin A, reducing the amount of vitamin A available to the cells to use in vision. This strategy may result in less vitamin A waste material, which is toxic to cells, but may also adversely affect night vision. Other strategies are examining cell survival factors -- chemical signals that may prolong the life of cells. Richard Spaide, MD, is an ophthalmologist with Vitreous, Retina, Macula Consultants of New York, and is affiliated with the Manhattan Eye, Ear and Throat Hospital Coast to Coast: Readers Share More Solutions to Make Home Life Easier In our last issue of Sharing Solutions, we published some of your suggestions for making home life easier, safer and more comfortable. Since we have continued to receive such a tremendous response on this broad topic, we're extending the conversation here. Lighting Is Critical Most people told us that effective lighting can make the difference in being able to accomplish everyday tasks easily and safely. At the same time, there are so many lighting choices that figuring out what's best can be overwhelming. That's why many of you emphasized the value of seeking guidance from an eyecare professional. In addition, your responses confirm that lighting preferences are individual and depend a great deal on your eye condition. As a result, solutions that work for someone with macular degeneration may not be as helpful for someone with glaucoma. Finally, we heard a lot about the need to experiment, and how lighting solutions can vary depending on the particular task at hand. Here are ten home lighting strategies that have worked for you: - Mount under-cabinet lighting in the kitchen; one reader found it easy to install fluorescent lights with adhesive backing. - Keep small flashlights near appliances and work areas. - Use nightlights in hallways, bedrooms and bathrooms. - Install lighting along walls, marking a path from the bedroom to the bathroom, and alongside treads on stairs. - Use lighting with dimmer options. - Use flexible-arm lamps (tabletop or floor-based) to focus light on activities like reading, cooking, sewing, paying bills, managing medications, etc. - Install track lighting with adjustable fixtures so that lights can be positioned on specific locations. - Brighten up a room with a torchiére lamp with a halogen bulb shining up to the ceiling. - Place home and porch lighting on a remote switch system; use a hand-held device to turn lights on/off and to adjust illumination levels. - Use motion sensor lighting outdoors. How Others Make Your Life at Home Easier Family members and friends can offer much support and help -- from communicating changes in the surroundings to ensuring that things are put back where they belong. One reader tells her guests "not to rearrange my stuff!" Several people commented that reminders to relatives are often necessary because it's easy to forget that shoes lying around, drawers left open and partially ajar doors all can be dangerous to a person with impaired vision. When you have vision loss, offers of help are usually appreciated. However, you may need to be specific about the kind of help you want. One woman told us, "They can help put groceries away, but they need to understand that they are assisting me. I need to have a voice in whatever is being organized." Another woman told us that her daughter-in-law kept offering opinions while helping her complete a survey. This reader had to put her foot down, saying, "This is my survey and my opinions, not yours!" But she faced the situation with good humor, adding, "You have to laugh and enjoy the moment!" Sometimes, social situations can be awkward for people with vision loss. Some popular suggestions include asking people to introduce themselves so that you know who's in the room, and asking that they say your name when initiating a conversation. Overall, people with impaired vision do not expect relatives and friends to make big changes in their homes. However, people with impaired vision do suggest that others can make visits more comfortable by: - Offering a tour and identifying the location of basics like bathrooms. - Pointing out obstacles, such as coffee tables or free-standing lamps. - Ensuring that hallways and stairways are kept clear of objects. - Identifying food selections on a buffet table or hors d'oeuvres placed in different locations. - Keeping pets at bay. Final Thoughts While family and friends provide valuable support, many readers tell us that they strive to be as independent as possible, including one person who commented, "Doing all one can to be independent is very important to me. Yet, I don't feel less of a person to ask for assistance when I need it." Others look to their local vision rehabilitation agency as a resource when their needs change -- or their vision changes. Losing one's vision is not easy, but taking advantage of professional services can make a big difference. One support group member summed it up well, "When I took vision rehabilitation, I learned not to give up and that the phrase, ‘I can't,' just doesn't exist!" l Five Helpful Lighting Tips - Make overhead lighting and task lighting as even as possible (e.g., avoid using task lighting in a dark room). - Position a task light to reduce shadows; for example, place an adjustable light in front of you or slightly to the side opposite your writing hand and focus it directly onto the task (craft, cards, book, etc.). - Control natural light with shades, blinds or curtains. Make sure that windows are behind you or to your side. - Avoid glare by placing your computer monitor or TV so that light sources don't reflect onto the screen (e.g., a monitor should not face a window). - Ask your eyecare professional about prescribing lenses that reduce indoor and outdoor glare, and improve contrast. They come in a wide variety of tints with varying degrees of light transmission. Thanks for Sharing ... Anne Ahland, Friendship Village of Tempe Low Vision Support Group, AZ; Phyllis Bierdz, Mayslake Village Low Vision Support Group, IL; Beverly Bookbinder and Marion Slacke, Focus on Eyes Support Group, NJ; Ernie Breece, Marion County Eye to Eye Support Group, OH; Betty Cain, Low Vision Support Group Max II, SC; Carolyn Dingman, Vista Center for the Blind and Visually Impaired Low Vision Support Groups, CA; Frances Fisher, FL; Julia Kleinschmidt, VIP Support Group, UT; John McElheron, The Way Eye See It Support Group, Lakeshore Seekers Peer Support Group, and Eye Am Coping Support Group, MI; Antonette Pickering, IA; Jerry Rosenberg, Macular Disease Association of Boynton Beach, FL; Mary Rumman, Turner Geriatric Clinic Low Vision Support Group, MI; Debbie Schramm, NE; Linda Scribner, League for the Blind and Disabled Support Groups in Angola, Auburn, Decatur, Fort Wayne and LaGrange, IN; Eileen Torres, NY; Kathleen VanVoorhis, PA; Delores Wussler, Insight Support Group, FL Ask the Expert: Additional Tips for the Home We asked readers to share a variety of challenges they're facing at home that they have yet to solve. In this column, we include advice from vision rehabilitation expert Nancy Paskin, CVRT, along with solutions offered during support group meetings. Q: What's the best way to identify keys and insert a key into a keyhole? A: Keys can be marked using color in a variety of ways -- with plastic stretchable covers, colored plastic tape or raised marks with brightly colored nail polish. Limiting the number of keys on a chain makes it easier to locate the one you need. Keep together those you use every day and store others separately in an easy-to-find place. To align a key with the keyhole, place a contrasting and/or raised dot on the lock above the hole. Locate the raised dot with the fingers of one hand and hold the key with your other hand. Bring your hand with the key to meet the other one on the dot. Then slowly move the key straight down to find the keyhole. You may also want to use a pocket flashlight to direct light facing down onto the lock to avoid shadows. One reader told us that home appliance/hardware centers sell keys with brightly colored heads with tiny built-in lights. Q: When selecting clothes, how can I coordinate colors on my own? A: First, it's important to establish a system using tactile markings and/or labels to organize closets and dresser drawers. When you begin, you may need the help of a family member or friend. Carefully go through your clothes and identify items that you know by touch, design, fabric and/or use (e.g., yoga, gardening, etc). This will reduce the number of labels needed. Figure out how you want to organize your closet. You can group clothing by color; type; or placing complete outfits along with accessories like jewelry, ties, shoes, handbag, etc., on hangars held together with a twist tie or rubber band. Whatever system you use, keep it simple -- make it easy to remember and follow. You can sew or pin labels or marks indicating a garment's main color directly onto it. Also, you can buy clothing tags, each with a different color written in print and braille. Alternatively, you can make large-print labels (using index cards and a bold-tip pen) for hangars or use them as dividers on a clothing rod. Some people find it easier to use a different number of safety pins to represent a particular color. With this system, consider not marking the most common color in your wardrobe. Then place one or two safety pins horizontally, vertically or diagonally to represent a particular color. Audible plastic tags offer another option. You can record the color and a brief description on the card and place it into a device that plays the message back. Talking color identifiers -- electronic, battery-operated devices -- are commercially available and expensive. However, they're portable, providing assistance when you go shopping. Q: How can I plug in appliances safely with low vision or no vision? A: If you have low vision, enhancing contrast may be all you need. Some of our readers have installed switch plates that contrast with the outlet, or they outline the plug area with a contrasting marker to make it stand out. In addition, you can increase illumination by directing a task light facing down onto the outlet, which will minimize shadows cast by your hand. You or a family member also can place raised dots or contrasting colored marks on the face plate above the outlet at the center of the two plug channels and on the left and/or right of each outlet in line with the plug channels. Visually or tactually find the top dot on the face plate above the outlet and place the tines of the plug so that the dot is between the tines. Use the index finger of your free hand to locate the side dot (on the left or right). Lower the plug to be parallel with your index finger and the tines should slip into the outlet slots. At NO time should your fingers touch the outlet or the tines of the plug -- one hand holds the plug and the finger of your other hand locating the side dots ALWAYS remains on the face plate. It's best to work with a vision rehabilitation specialist who can provide practical visual/tactile techniques and ensure your safety in using appliances as well as performing other tasks around the house like preparing food and cooking. Nancy Paskin, MART, CVRT, is the Editor of the Association for Education and Rehabilitation of the Blind and Visually Impaired's RT News, and former Director of Vision Rehabilitation Therapy at Lighthouse International Free Resources - All About Low Vision: A Guide to the Major Causes of Vision Loss and How to Find Help, made possible by (OSI) Eyetech and Pfizer, includes a poster illustrating how the world looks to someone with macular degeneration, glaucoma and diabetic retinopathy, among other conditions.Order your copy by calling (212) 821-9566 or e- mailing kcheng@lighthouse.org. - Living Better at Home: A Guide for People with Vision Loss contains information about caring for your eyes, normal vision changes due to aging, common age-related eye diseases and their treatments, vision-friendly solutions and more. The kit includes helpful products: a signature guide, a bold-tip pen and tactile dots to mark appliances. Made possible by an unrestricted educational grant from Genentech, these materials can be ordered by calling (212) 821-9567 or visiting www.lighthouse.org/livingbetter. While online, check out a brief video demonstrating products and techniques to make food preparation safer and easier. And view online mini-courses that take you step-by- step through these techniques. Special Thanks! We are especially grateful to the Wallerstein Foundation for Geriatric Life Improvement for providing very generous support for Sharing Solutions, enabling people with impaired vision, their family and friends to access and share vital information and resources. Take Part in Our Next Coast to Coast When vision loss occurs, people cope in many different ways. In our next issue, we'd like to feature your experiences, along with your advice for people who are newly adjusting. Use the following questions as your guide at your next support group meeting or during conversations with family and friends. - In what way has vision loss had the most significant impact on your life? And how have you coped? - Given what you know now, what would have been helpful to know then? - What advice do you have for people who are newly visually impaired? For their family and friends? Please respond by March 15, 2008, so that your responses can be included in our next issue. Call Carol Sussman-Skalka at (212) 821-9481, or e-mail her at sharingsolutions@lighthouse.org. You can also send letters or tapes to Carol at Lighthouse International, 111 East 59th Street, New York, NY 10022-1202. Cynthia Stuen, PhD/DSW Senior Vice President, Policy and Professional Affairs Carol J. Sussman-Skalka, LMSW, MBA Newsletter Editor Karen R. Seidman, MPA Director of Education and International Programs Laurie A. Silbersweig Editorial Director, Marketing Jaine M. Schmidt Creative Services Director 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) 821-9705 www.lighthouse.org © 2007 Lighthouse International Printed on recycled paper J04996/F07/8500/12-07