Sharing Solutions Spring 2006 A newsletter for People with Impaired Vision and Their Support Networks A Medicare Milestone For the past few years, we have kept you up to date on the progress in obtaining Medicare coverage for vision rehabilitation services. And we appreciate your ongoing support of this important advocacy issue by calling and writing to your legislators. We're happy to announce that a Low Vision Rehabilitation Demonstration Project was authorized by the Centers for Medicare and Medicaid Services to begin on April 1, 2006. This breakthrough enables certified vision rehabilitation professionals to provide services under Medicare in the settings where people need them, including their own homes and community locations. Read more about it on page 7. Also in this issue, we discuss two of the more difficult decisions that people with vision loss face. The first is whether or not to use a long cane. While a cane has many benefits, the decision to use one can stir up strong emotions. The second decision involves driving. We explore the concerns people have - and the changes they make in their driving behavior - when vision problems arise. And thanks to everyone who shared their experiences with overprotection. We hope you'll find solutions that will help you and those close to you. Enjoy the newsletter! Carol J. Sussman-Skalka Newsletter Editor What a Cane Can Do for You By Michael Honan, MS, COMS, CLVT "A cane is for blind people. And I'm not blind!" As a Certified Orientation & Mobility Specialist (COMS), I hear this all the time. It's a common myth that is hard to change. In fact, the long cane can also benefit people who are partially sighted. However, the decision about whether or not to use a mobility device can be a very difficult one. If you have some usable vision, you may wonder if it's really necessary. There are also your emotions - how you feel about being identified as a person who is visually impaired. You may also feel uneasy about how others will react and how you will deal with that. These concerns are common and normal. Fortunately, there are professionals you can turn to for guidance and help. I'd like to share some information that may assist you to make choices that work for you. Travel Problems You May Experience Depending on the type of vision loss you have, you can experience a variety of different problems as you navigate your surroundings. Here are some common ones that you may identify with: - embarrassment at your inability to see and identify faces, causing you to ignore someone you know - inability to differentiate between a puddle or a hole, or to know when you are approaching curbs or steps - difficulty determining the height of a step or curb - trouble discerning if the "walk" signal is on or off, or reading street signs l not feeling safe when crossing streets l bumping into people or things l not noticing obstacles in your path or landmarks If you experience any of these problems, it's a good idea to consider an evaluation with a certified orientation and mobility specialist. What to Expect in An Evaluation A COMS will ask you questions about your travel experiences and also observe how you move around. There are a number of factors to consider when determining if a cane can be helpful: - your walking pace - walking style (shuffling, marching) -l use of feet to probe ahead, or to trail the grass or building line - over- or under-stepping an object - number of critical incidents, such as bumping into, or tripping over, objects - ability to detect drop-offs, such as curbs and stairs - position of your head when walking - use of existing vision - management of irregularities (cracks and bumps) on the ground To travel safely using your sight alone, you need to have adequate forward and side vision to react in sufficient time to people moving about you, and you must be able to see and react to dangers such as curbs, stairs, holes, puddles or other obstacles in the sidewalk, or furniture in your home. Why Use a Long Cane? Any technique or skill taught by a COMS is designed to provide advance notice of what is within your environment. A cane is a tool that is like an extension of one's arm. It is used to preview what's ahead and can help with detecting obstacles, ground irregularities and curb or step drop-offs before you reach them. Advance warning is critical for safety, allowing you to have sufficient time to react. Learning how to gather information using hearing and touch, in addition to existing vision, is also part of cane training. The goal is to be a "proactive" rather than a "reactive" traveler. For some people, the cane may be needed just for identification, such as alerting drivers and pedestrians. Or, the cane may be helpful in very specific situations such as in crowded places or at night. Once the need is established, a COMS will recommend a cane size based on a few general rules. Some instructors start with a base measurement from the ground to the sternum or breastbone, while others may initially recommend a longer cane. The instructor will factor in a person's health, physical condition, walking speed and the distance a person moves in one full step. The key is to ensure that the cane provides sufficient reaction time and distance to maintain safety when traveling. Types of Canes Three types of traditional canes are currently used: the straight or rigid, non-collapsible; the folding, which usually has between four and six sections and is held together by an elastic cord; or the telescopic, which collapses. The folding and telescopic canes are easily stowed in briefcases or pocketbooks. Canes are generally made out of fiberglass, aluminum, graphite or plastic. There are three basic parts: the grip, where the hand is placed; the shaft, which has white and red reflective tape; and the tip, the part of the cane that comes in contact with the ground. Tips are available in various styles and colors. They are named after shapes and sizes, such as the pencil, mushroom, marshmallow, rolling, jumbo rolling, rolling ball, rolling wheel and the metal glider. The selection of the most effective tip depends on where the person lives and the area traveled. For example, the marshmallow tip is designed to "roll over" cracks. The rolling tip features a ball bearing to reduce contact friction and wear due to the rolling action while moving the cane from side to side. Your Emotions Making the decision to use a cane can stir up a variety of emotions and many people have a hard time accepting its use. For one thing, people often associate the cane with blindness, and family and friends may not understand why someone with usable vision would need a cane. Others find that they're concerned about letting the world know that they have vision loss. Or they may feel vulnerable, embarrassed or worried that people will feel sorry for them. All of these feelings can get in the way of learning about, and evaluating the benefits of, a cane in one's own life. It's not easy to come to terms with all of these issues and it may be helpful to consider individual or group counseling with a social worker. Also, sharing concerns, experiences and coping strategies with others who are in a similar situation in a support group can be beneficial. People who receive cane training are often amazed about the advantages of their increased independence, control and safety. As one client stated, "I would rather look like an independent person with vision loss than a person who is stumbling around and bumping into things." Next Steps The decision to use a cane is best made in collaboration with a certified orientation and mobility specialist who can provide the expertise in evaluation, cane selection and training in its use. There are also many techniques and tips for safe travel that can help you remain safe with and without a cane. One client stated, "It has given me the ability to remain independent and to continue with my life. It's true I cannot drive but I still can reach my destination. I have less hesitation and I feel more secure when walking in my community." And that is what it's all about - being safe, having independence and maintaining your quality of life. - Michael Honan, MS, COMS, CLVT, is the Clinical Supervisor of Orientation & Mobility at Lighthouse International. Are you helping an older relative or friend with vision loss? Do you sometimes feel stressed or down? You're not alone! And you may be eligible to participate in a free telephone discussion group for people helping someone age 65+ who is visually impaired - from the convenience of your own home, no matter where you live in the US. Led by a Masters- level counselor, this support group will "meet" over the phone every two weeks for 9 one- hour sessions. We'll discuss common concerns and issues, and offer suggestions for: - understanding vision loss - enhancing communication - when and how to offer help - dealing with stressful situations and more Interested in participating? Please contact Verena Cimarolli in the Lighthouse Arlene R. Gordon Research Institute, at (212) 821-9376 or via e-mail vcimarolli@lighthouse.org. Driving and Vision: A Lighthouse Study Update A year ago, we told you about a Lighthouse study, funded by the National Institute on Aging, exploring driving transitions among people with vision problems. The five-year study focuses on current drivers with vision problems to identify what influences them to change their driving behavior or to stop driving - and the psychological impact of these decisions. We are grateful to Sharing Solutions readers who helped us in the planning stages by sharing their driving experiences. Here's a look at our progress to date: Some Results Are In We have preliminary data based on interviews with 100 people who ranged in age from 55 to 90, with the average age of 75. Almost all made changes in their driving once they began having vision problems. The top five changes include not driving: at night, in snow/rainy conditions, during rush hour/busy traffic, in the city and in unfamiliar places. About 75 people reported vision problems causing some difficulty with driving. A person's self-rating of his/her vision problems was more strongly related to the number of changes made to driving behavior or to considering not driving, as compared to objective vision measures such as visual acuity, contrast sensitivity and visual field. Only 44 people considered the possibility of not driving in the future. Yet some report that they're looking ahead for alternate plans when driving may not be an option. We asked participants who they talk to about their concerns, what they talk about and whether or not these discussions influenced their driving decisions. Findings showed that about one-half spoke with family members and more than one-third each spoke to friends and to doctors. Some talked with more than one person. Most discussions involved general comments about vision and driving problems. For example, one 80-year-old man said, "What if there's a time in the future I can't drive - maybe because of dementia or cataracts. My wife knows this, and it's very important to me that she learns to drive." Other conversations with family members or doctors were about limiting or stopping driving, while some exchanges with friends provided emotional support around driving concerns. Some family members and friends have discussed giving the driver a ride if needed. For example, a 72-year-old woman described a conversation with her friend, "One day I might be dependent on my friends to pick me up and take me shopping, and I talked to her about that. She said, 'Great! I will take you anywhere you need.'" Yet about 80% indicated that these conversations did not change their driving behavior. A majority reported that doctors, spouses and children would most likely influence driving decisions. What can make driving transitions less stressful? We hope to gain insights that will assist people to make timely decisions about driving, and to successfully adapt to changes in their driving or to the transition from driver to ex-driver. You Can Participate If you (or someone you know) are 55 or over, have some problems with your vision, are currently driving and live within 100 miles of New York City, we invite you to participate in our study. You will receive $25 for a 90-minute interview conducted in your home. All responses are kept completely confidential. To learn more, please contact Dr. Steven E. Mock, Project Director, at (212) 821-9531, or via e-mail at smock@lighthouse.org. - Thanks to Steven E. Mock, PhD; Joann P. Reinhardt, PhD; Amy Horowitz, DSW; and Kathrin Boerner, PhD, of the Lighthouse Arlene R. Gordon Research Institute, for providing the information for this article. Coast to Coast: Readers Share Insights on Overprotection In our last issue of Sharing Solutions, we featured an article about how overprotection by family members and friends can have a negative impact on a person's ability to adapt to vision loss. People can feel overprotected when others provide unnecessary assistance, encourage dependence, shield them from stress or overly restrict their activities. We asked you to share your experiences and include your family members' perspectives as well. Here's what you had to say: Overprotection Has Many Forms People told us that family and friends are usually well-meaning and want to help. Yet, sometimes their actions are misguided, causing feelings of frustration, hurt or even anger. Some examples include when people: - Make assumptions about what you can and cannot do: "They assume I want my food cut up, that I don't want to go bowling or that it's too difficult to surf the Internet." - Do too many things for you: "They don't have the patience to allow me to do them in my own time and way." - Expect little or nothing from you: "They tell me I do not have to bring a potluck dish but I always bring something I enjoy making." - Restrict your movements: "They try to hang onto my arm and do not want me going out alone." - Express worry and concern about using public transportation: "I explain that I have been trained to use a cane and can always ask for help." - Try to convince you to move to an assisted living facility: "I can still take care of myself." These exchanges can cause a range of reactions. While some people take it in stride and accept the help, others feel hurt or diminished when their capabilities are underestimated. And still others feel angry and indignant, including one person who admitted, "Sometimes, I get angry and I just explode. Then I have to calm down because anger will not solve anything." One woman said simply, "When there is too much help, I feel robbed of my independence." Handling Overprotection People deal with overprotection in a variety of ways. Some accept unneeded help, including one woman who said that she "goes along to keep the peace," knowing that her daughter just wants the best for her. Others show appreciation for the offered help even when they don't actually need it because they don't want to risk discouraging someone from offering it in the future. One person commented that she "allows people to do for her because they want to do it and it makes them feel good." This statement sparked a provocative response from a fellow support group member who said, "How would you feel if someone took you by the elbow and pushed you to a restroom?" The woman replied, "Well, it depends how badly I had to go!" Although people couldn't help but laugh, it pointed to the struggle and differences on how best to deal with these situations. Many people gave examples of how they express their preferences and feelings. One person said, "I explain how and why I can do something myself. Sometimes, I even give them a demonstration to put their minds at ease." Another tells over-zealous helpers what works best and explains the difference between what's helpful and what's not. For example, one woman realized that others thought they were being helpful by opening the car door for her. However, what she really needed was help locating the door handle because she felt better oriented to the car when she opened the door herself. In another situation, a man found himself being pushed forward by someone trying to move him in the right direction. Knowing that this was not safe, he tactfully explained sighted guide technique and asked the person to lead the way. One reader commented, "I try to be nice and not hurt their feelings, but I do let them know I want to do some things on my own." And another shared, "People will say, 'let me do that,' and I will either let them or respond that I can do it myself." Family and Friends on Overprotection While some family members admit that they sometimes take over to get things done faster, they usually realize that it's not helpful, including a spouse who said, "Mostly, we work very well as a team." And open communication helps. Another relative said, "I want to know how best I can help. I ask if help is needed." Members of a low vision support group agree, "talking openly with family members about your vision and abilities is the key to satisfying solutions." A number of spouses who attended support groups with their partner who is visually impaired felt that they encouraged their partners to be as independent as possible. One wife shared, "I try to let him do as much as he can. I watch to see if he is struggling." But another spouse said, "If danger is a factor, I act first and explain later." Similarly, people who felt that overprotection was not an issue pointed out that their friends and family usually asked before stepping in and helped only when needed. What You Can Do If you have a vision impairment, there are things you can do to help others better understand how, how much and when to help. Here's some advice from fellow readers: - Be proactive: If you're the person with the vision impairment, it's important and helpful to ask for assistance when it's needed. - Set boundaries: When others want to do things for you that you want to do yourself, it's okay to say no. - Educate others: Tell people what you can and cannot see or do. Give examples. - Be decisive: Know when you want help and when you don't, and communicate with people around you. - Be specific: Let people know how best they can help you. For example, be precise about what particular part of a task is troublesome and what parts you can do on your own. - Suggest observation: Encourage family members to learn about the skills you're learning either through attending seminars provided by your local vision rehabilitation agency or by observing some of your training sessions. - Change roles: Ask a family member to think about how it would feel to need help and imagine yourself as the person wanting to help. Putting yourself in each other's shoes can lead to a better understanding of both perspectives. Overprotective exchanges can be trying for everyone. While many people with vision loss ask for and accept help, they often struggle with when to draw the line. As one person said, "Let me try to do certain things. If I cannot, I will feel better for having tried. It helps me determine my limits." But this does require others to be patient and not to jump in at the first sign of difficulty. One support group leader recommends that family members ask, "Can I help you with that?" Also, people often appreciate when family members notice new accomplishments. Another support group leader shared the following story, "After one of my lectures, a kind gentleman helped me on with my coat, which, being a lady, I didn't mind a bit. But what I did mind is when his wife started to button it up!" There are times you need to speak up and help people "get it." If you don't, who will? - Send Sharing Solutions to a family member or friend! Just e-mail sharingsolutions@lighthouse.org and indicate the preferred format (large print, audiocassette, online or braille) or call (212) 821-9485. Medicare Low Vision Rehabilitation Demonstration Project Launched As this issue goes to press, we are happy to announce that the Centers for Medicare and Medicaid Services (CMS) has authorized a demonstration project in six geographic areas to study the impact of Medicare coverage for vision rehabilitation services. Under the project, Medicare beneficiaries with a diagnosis of moderate to severe vision impairment that cannot be corrected with medication or surgery will be eligible to receive up to nine hours of rehabilitation services when prescribed by their ophthalmologist or optometrist. This is a major breakthrough because it provides Medicare reimbursement for services provided by specialized vision rehabilitation professionals - certified vision rehabilitation therapists, certified orientation and mobility specialists, and certified low vision therapists - as well as occupational therapists. In addition, services can take place in community settings, including a person's home without the need for the supervising eyecare professional to be on the premises. The provisions of the project do not cover low vision devices. To be eligible, you must live, and your eye doctor must practice, in one of the six designated locales: New Hampshire; New York City (5 boroughs), New York; North Carolina; Kansas; Washington State; or Atlanta, Georgia. The demonstration will run for five years, from April 1, 2006 through March 31, 2011. At its conclusion, the data collected during the study will be used to determine whether low vision rehabilitation services should be covered for all Medicare recipients across the country. "The Lighthouse is excited to participate as a demonstration site because of the positive impact it will have on quality of life, safety and independence for people with impaired vision. It is our hope that the project will ultimately result in access to vital vision rehabilitation services for all Medicare recipients with vision impairment around the nation," says Tara A. Cortes, PhD, RN, President and CEO of Lighthouse International. If you live in one of the designated locales and want to know more about how you can benefit, contact your local vision rehabilitation agency or state agency for the blind. To locate agencies in your community, click on Help Near You on www.visionconnection.org or call (800) 829-0500. - We are able to provide Sharing Solutions thanks to the support of caring people like you. You can help support this and other Lighthouse services by making a secure credit card donation by calling (212) 821-9437 or visiting www.lighthouse.org/donate. Checks made payable to Lighthouse International can be sent to: The Sol and Lillian Goldman Building, 111 East 59 Street, New York, NY, 10022-1202 Attn: Sharing Solutions. Thank you! Thanks for sharing . Tracy Butler, Program for Visually Impaired Adults Support Group, IN; Betty Cain, Low Vision Support Group MAX II, SC; Kate Chamberlin, The Lemonade Society, and Jim Fleming, The Webster Visionaries, NY; Janet Hargreaves, Sebastopol/Santa Rosa Macular Degeneration Support Group, CA; Sandy Neyhart, Pierre Area Vision and Encouragement Support Group, SD; Linda Scribner, League for the Blind and Disabled Support Groups in Auburn, Decatur, LaGrange and Fort Wayne, IN; Karolina Smiley, Montcalm and Mecosta Counties Visually Impaired Support Groups, MI; Frank Vance, Getting Your Self Together Support Group, AZ; Delores Wussler, Insight Support Group, FL. Sharing Solutions Cynthia Stuen, DSW/PhD Senior Vice President for Services Carol J. Sussman-Skalka, LMSW, MBA Newsletter Editor Karen R. Seidman, MPA Director of Education and International Programs Laurie A. Silbersweig Editorial Manager, Marketing Jaine M. Schmidt Director of Creative Services Photos by Robert A. Lisak 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 c 2006 Lighthouse International  Printed on recycled paper Take Part in Our Next Coast to Coast People often assume - mistakenly - that a long cane is only for people who are blind. As discussed on page 1, a cane can also have valuable benefits for people with partial sight. However, making the decision to use a cane often stirs up a lot of emotions. In our next issue of Sharing Solutions, we will feature an exchange on your experiences with cane use. Discuss the following questions at your next support group meeting or with family and friends: - What were some of the factors that made you realize that you needed a long cane? How has it been helpful for you? - What concerns or feelings did you have about the cane prior to your cane training? How have they changed? - What have you found to be the best ways to educate people about how a cane helps? - How do your family and friends support or hinder your cane use? - What advice would you give to other people who are considering a long cane? Please respond by August 15, 2006, so 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, The Sol and Lillian Goldman Building, 111 East 59th Street, New York, NY, 10022-1202.