Low Vision Resources & Services

BrightFocus Foundation
“Low Vision Resources and Services”
Transcript of Teleconference with Katherine Freund and Karen Keninger
November 23, 2015
1:00 – 2:00 p.m. EST

Please note: This chat has been edited for clarity and brevity.

MICHAEL BUCKLEY: Good afternoon, this is Michael Buckley with the BrightFocus Foundation, and I want to welcome you to our November edition of our BrightFocus Chat, which we provide once a month to answer your questions and update you on helpful hints or news from the medical and research front on low vision.

Today we are going to talk about low vision resources and services, particularly as, for most of us in America, the weather is getting colder and the days are getting shorter. For many people there can be a growing sense of isolation as it gets harder to get out to see family and friends, and a lot of us enjoy reading, but for different reasons—normal aging or conditions like macular degeneration—it gets harder to read. So we thought this was a very well-timed opportunity to bring together two people who help run truly excellent services to help people at this time of year.

The two people we have with us today are Karen Keninger, who runs the Library of Congress’s National Library Service for the Blind and Physically Handicapped, and Katherine Freund, who is the President and Founder of the Independent Transportation Network (ITN America), which is a nonprofit that helps folks with transportation in their communities. Over the next 40 minutes, we are going to learn about talking book services, we are going to learn about a transportation network of rides for people with low vision, and most importantly, we are going to answer your questions.

So, Karen, I would like to start off with you. Tell me a little bit about the National Library Service at the Library of Congress and how you help people with vision disorders.  

KAREN KENINGER: Thank you very much, Michael. It is a pleasure to be with you today and to tell you a little bit about the National Library Service for the Blind and Physically Handicapped. The National Library Service—we call it NLS for short—is a free public library service for people who can’t read standard print. We provide materials in basically two formats. We provide talking books, which are audio books in specialized formats so that we can provide any book that is published in the United States through our service, technically, although we can’t do them all. And we also have magazines. We have thousands of talking books and audio magazines, as well as braille books and magazines.

We provide the books and we also provide the playback equipment that you need to play them back on. They are not done on standard media like CDs, so we have a special cartridge and we have a player that we provide. It is done on loan, and if it breaks you send it back and get a new one. They don’t break though—they are very sturdy. They don’t break very often, I guess I should say.

We also have a mobile. We call it BARD mobile, which is a way that you can download and use our books on your iPhone, your iPad, or on your Android device. For people who are on the go, that is a really good option to be able to download the books and put them on their iPhone and listen to them that way.

So we have several ways to help you find your books and your magazines, find the ones that you want to read. One of them, and one of the best, is a personalized one-to-one service that is provided by specialized reader advisers who live in your area and who are able to go through the catalog with you and find the things that you like to read.

If you are a little bit more into doing this on your own, we do provide catalogs that come out six times a year with the latest additions to your programs. They come out in large print, braille, and audio format so that everyone can read them. There is an order form that comes with them.

We also have online catalogs, as well as—of course—our download service where you can find the books that you want to read. Our goal is to give you a public library service with the full spectrum of materials that you would get in your public library but in a format that you can read. That’s what we do.

MICHAEL BUCKLEY: Well, that is fantastic. Who is eligible to take advantage of this service?

KAREN KENINGER: Anybody who lives in the United States or is a U.S. citizen living abroad is eligible for the service if they can’t read standard print because of a visual disability—blindness or low vision—or a physical disability, such as inability to turn pages or hold a book—stroke, cerebral palsy, things like that often cause those. Or a reading disability that a doctor certifies.

MICHAEL BUCKLEY: How would somebody sign up to participate?

KAREN KENINGER: We have a phone number you can call, which is 888-NLS-READ or 888-657-7323, and that phone number will lead you to your network library where you can get the information that you need. Our services are provided through local and regional libraries and this is the way to find the one in your area. We also have a website, which is www.LOC.gov/thatallmayread. That website also has that information.

MICHAEL BUCKLEY: Well, that is fantastic. Another form of continuing to stay very engaged with your community would be transportation services and Katherine Freund’s organization. Katherine, can you tell us a little bit about the Independent Transportation Network and why you think it helps people?

KATHERINE FREUND: Independent Transportation Network (ITN) is a car service that basically picks people up at their door, at their work, at their doctor’s office, and takes them where they want to go and then brings them back again. It is available 24 hours a day, 7 days a week and for any purpose at all. It is a membership organization, and different communities have ITN affiliates all over the country. We have 18 now in 20 states delivering rides and two more starting service soon. People join the organization. They set up something called a Personal Transportation Account, which is like a prepaid account, like cars have on the turnpike. Then you call and schedule your ride, and someone will come and take you where you want to go.

We provide arm-through-arm, door-to-door service, so that people who have difficulty with depth perception or any kind of visual impairment, we make sure that they are safely to the door of where they need to be. The short version—that’s the long version—is that it is like having your own car.

MICHAEL BUCKLEY: Yes, that is absolutely wonderful. To remind our listeners, this is a nonprofit cooperative undertaking. Katherine, we were fortunate to have you on a Chat about 10 or 11 months ago, and since then I know you embarked on a tour of the country to visit some of the ITN chapters. Do you have one or two main, powerful reflections on that time? Getting out and seeing the service in person?

KATHERINE FREUND: Yes. I did more than 100 interviews. I drove almost 12,000 miles. I made over 25 stops. Just this morning I put the snow tires on my car here in Maine and the man at the auto place remembered that I left on the storybook tour and he said, “Was it fun?” and I thought about it and I said, “Fun would not be the way I would describe it.” I would say it was a once in a lifetime experience that so many people all over the United States who had never met me would sit down and tell the most compelling and honest and open stories. It was—well, you know you hear people say, “It was a privilege to do this”—it was a privilege to do this. They just told stories from their hearts, from their own experience. I could give you so many, there were more than 100.

Just to pick one or two, there was a woman who seemed like anybody’s mom. Sweet, nice, soft-spoken lady. She was from ITN St. Charles out in Missouri and had macular degeneration. Her father had it and she had it, so she kind of knew it was going to happen. She had a terrible car accident and decided that she was afraid to drive after that, and her son helped her sort through the different transportation alternatives that were available to her in the community. He looked at public transportation and paratransit and so forth, and he told her that she should try this new service that was coming along called Independent Transportation Network and that she could try it for a year, and if she didn’t like it she could move on to something else. And she just loved it. She said that she admired the people who volunteered to drive, because about half of ITN’s rides are delivered by volunteer drivers who give their time and the use of their car to help others in their community.

For the people who use the service, it is a very affirming experience that there are people in the community who are willing to give a little bit of time and reach out and make sure that other people have transportation. One of the most important things that she did—and many of the other people did this—I should back up for a minute.

I asked everybody the same question all over the United States, and this was the question: Can you tell me a story about how access to transportation has changed your life or the life of someone you know or love? And then I just shut my mouth until they told their story. But, at the end of their telling their story, I would also ask them if they had advice that they would like to share with other people that they thought was helpful or useful. Very often they did. Shirley Master’s advice, this was the woman in St. Charles, Missouri, was for people to have a positive attitude and to do what you have to do to make the best of it. To be brave and to not be afraid.

That story was echoed again, and again, and again across the United States. From California to South Dakota to Iowa, Kentucky, Pennsylvania, Maine, Tennessee, Florida—everywhere. People were talking about how important it was to reach out, how important it was to try things, and how important it was to be brave about your life. It was very inspiring.

MICHAEL BUCKLEY: Wow! What an amazing story. Thanks for sharing that with us. Just a quick follow-up question, Katherine. How can someone sign up to find an ITN network in their community?

KATHERINE FREUND: There are a couple things people can do. You can go to our website, which is www.ITNAmerica.org, but for a lot of communities in the United States there is not an ITN yet. But you can call our office and speak to Magda Darling. Her number is 207-591-6939. There is also another number, and this number is also very important. It will take you to a call center we have here called Rides in Sight. That call center has people trained to answer questions and help you find whatever transportation there is that is available in your community. The telephone number for Rides in Sight is 1-855-607-4337.

Rides in Sight has 15,000 transportation services listed in it. If you can use a computer, the database is searchable online. But if you prefer to call, you can call the Rides in Sight number, and a trained person will speak with you and find transportation for you in your community. If by some chance we don’t have your community in the database, we will call you back within 24 hours and will do the research for you. If there is something there, we will connect you with it.

MICHAEL BUCKLEY: That is fantastic. Thanks, Katherine. Karen Keninger at the National Library Service, I know a lot of people enjoy the daily newspaper or being in book clubs. Is there a way that the Library of Congress National Library Service can help with that?

KAREN KENINGER: There certainly is. With regard to the newspaper, we support the newspaper service called NFB Newsline. You can sign up for NFB Newsline through our regional libraries. NFB Newsline is a telephone-based service that will read to you with an electronic, but very good, synthesized voice, the newspapers of today. So today’s paper will be on there. You can dial in and move around in the paper and read the parts you want to read and skip the parts you don’t care about. There are over 300 newspapers and magazines on that service now. That is available for anyone who qualifies for our service as well and gives you complete contact with the New York Times, the Washington Post, and a lot more local newspapers.

With regard to book clubs, a number of our network libraries actually host book clubs. Some of those book clubs are held in the facility of the library, but some of them are done over the phone. We realize that transportation is a big issue for people who can’t see well enough to drive—and I know that well since I am one of them—and so we have telephone-based book clubs where people are able to call in and discuss a book. I think that works out well for a lot of people who aren’t able to get to a public library setting for a book club.

Speaking of transportation, we also realize that people are not going to come to their regional libraries. It might be in another town, it might be miles and miles away, and even if it is just downtown in a big city, it is sometimes hard to get to. The books that we have are mailed, through the mail, and they come directly to people’s doors. They are mailed at no cost to the library and you just turn a card over and throw them back in the mail. There is no cost to mail them back either. That makes our service very, very possible for everyone.   

MICHAEL BUCKLEY: Well, that is fantastic. I just want to pause for a moment and mention that BrightFocus has several resources available free of charge that may be able to help. First, we have a free publication called “Safety and the Older Driver.” That is available at our website www.BrightFocus.org. It is also available free of charge by calling BrightFocus at 1-800-437-2423. Additionally, we have resource lists for people with macular degeneration and another resource list for people with glaucoma and for their families. That is also available at the same website address and the same phone number.

Question for Katherine Freund: With Thanksgiving this week and the December holidays just a few weeks away, I can imagine a lot of families coming together for the first time in a few months, family members from different parts of the country gathered together. From what we understand here at BrightFocus, that is often a time when people notice changing medical conditions in a family member. I know this can lead to some difficult conversations over Thanksgiving and the December holidays. I was wondering, Katherine, if you could tell us a bit about your observations about how to best manage these transitions and how the families can best talk about these issues while passing the stuffing and the green beans.

KATHERINE FREUND: Can I just take 15 seconds to tell Karen that I think that having book clubs by telephone is a fabulous idea. It is really wonderful.

Yes, families come together, and often they come together from great distances, and they don’t have many opportunities to come together. And many generations come together. Those are times when people want to try to have a conversation about things that are important to them and the issue of driving and making the transition from the driver’s seat to the passenger’s seat is a family affair. It is very much a family affair. Adult children worry about their parents. They worry about having this conversation. They are often far more frightened of having the conversation than their parents are. I assume it is from that transition of roles or reversal of roles. But national studies do show that older people are willing to have this conversation.

For the adult children listening, I want to say, take a deep breath. You can do this. So that’s one thing. The other thing is that the transition to the passenger’s seat happens over many years. It is not a sudden thing or an overnight thing. People adjust their driving to their diminishing physical abilities and their diminishing cognitive abilities. So they stop driving at night because they lose night vision. They stop driving in bad weather. They stop driving on the interstate because it is difficult to judge the speed and distance of an oncoming vehicle. That is a cognitive issue. People stop driving in unfamiliar neighborhoods, and on, and on, and on. During the years where they are making the adjustments for their safety, they are also losing a lot of their mobility.

The time comes when it is really not going to be safe at all. If you want to have a conversation with a parent about this, know that you can do it a little bit at a time, and you can do it in a very positive and supportive way. I always started my conversation with my parents by telling them that I loved them. The first thing I would say is, “I love you. I need to talk with you about something because I have concerns for your safety.” Putting together a plan for how people will remain independent and mobile beyond the years when they are driving their car, either all of the time or some of the time, is really the key to making this transition happen. To ask people to stop driving and to not have a plan in place so that they cannot just get their groceries and go to church or synagogue but also get to shopping, and get to see their friends, and get to see their grandchildren in the school play, and get to play pinochle or go to the casino, or go out to dinner—all of the things that make your life have quality to it. You need to have a plan for how to do that. I’m sure you can understand that once you do have that plan, and you try it a little bit at a time, the fear of not driving begins to diminish.

MICHAEL BUCKLEY: Katherine, related to that, we have a question from Betsy from Virginia, who is wondering, are there any independent or online programs to help assess an older person’s driving? Almost a third party that could be brought into this?

KATHERINE FREUND: Yes, there are a couple of things you can do. There is something on the American Automobile Association’s website, there is a computerized test that is free that you can take. You can also go to an occupational therapist, and they are very skilled at administering tests for older people to measure their skills. That gives you a third-party, trained professional opinion. So there is that free online computer program, but then there is also seeing an occupational therapist. If you need a referral to an occupational therapist, you can almost always get one from your regular doctor or from an eye doctor.

MICHAEL BUCKLEY: Great! That is very helpful. Karen Keninger, we have a question for you from Melanie from Colorado, who wonders, are there any magnifiers or devices that a person who wants to read a book can use, where it scans the book and plays the words back?

KAREN KENINGER: Let me answer that a couple of different ways. There are a number of devices that are intended for a person to put a book under, a closed circuit television camera for example, and then it will put the text of the book up on the screen so that you can read that on the screen, and you can change the size of it as much as you want. There is also a lot of technology that will take a book and convert it to a digital format through scanning, and then you will be able to read it on your computer screen either with synthesized speech or with a screen enlargement type program. So there are a number of ways of approaching that particular thing.

MICHAEL BUCKLEY: Great, thank you. We have another question from Tom from New Jersey. This is for Katherine Freund. He wants to know a little bit about the drivers for the Independent Transportation Network. How are they selected and trained? What is the process for how a person who wants to volunteer becomes part of your Network and provides these services? How does one apply and get screened or trained to best provide these services? 

KATHERINE FREUND: It is easy. Contact your local affiliate—and there is a map on our website to show you where your local affiliate is. Driving itself is a pretty basic skill threshold. We do provide training to help people to understand how to appropriately offer arm assistance, how to guide a person with visual impairment the proper way so that you are being helpful to them and not unhelpful to them, and also how to help people with their seatbelts, how to help a service animal, where they can ride in the car, those types of things. In terms of history, we do a criminal background check, a moving violation check, we do an interview, check personal references, driver’s license, insurance, inspection sticker. We are pretty careful with our selection of our drivers. Does that help?

MICHAEL BUCKLEY: Yes, that is great. The next question is also from New Jersey. Nancy is wondering, is there a fee to use the ITN networks?

KATHERINE FREUND: Yes, it is a paid service and it is charged by the mile. It is generally—this is a generalization because all affiliates set their fees themselves—it is generally about half the cost of a taxi. It is subsidized, not with government money but with local fundraising. The local affiliates are always working very hard to do their fundraising to subsidize the rides. We try to keep the service very affordable. There is no cash changing hands in the cars. That is what the personal transportation accounts are about. You can pay by credit card if you wish, but we do need to cover the cost of the service.

MICHAEL BUCKLEY: Sure, that makes sense. And related to that, Karen Keninger at the Library of Congress, is there a fee for the services you have mentioned today?

KAREN KENINGER: There is absolutely no fee for any of those services, the newspaper service or the library service. The library service is funded by the federal government and state and local government. So is the newspaper service, actually.

MICHAEL BUCKLEY: That’s great. We have time for a couple more questions. Before we close, we will ask everybody to read out the phone numbers and web addresses for the questions we have mentioned. Katherine Freund, why is it that people have more trouble driving at night than during the day? Related to that, does ITN provide rides in the evening for people who may be able to drive during the day?

KATHERINE FREUND: Yes, ITN service is 24/7. That is a very good question, because during the years when people are transitioning, they can often drive safely during part of the day and in certain locations, but not in other locations and not at night. I’m not an expert on visual impairment, so I can tell you what I know about night driving from my memory of reading the literature, and it has to do with your eyes changing with age. I think it’s the darkening of your corneas. I may be wrong, it might have to do with your iris. But it is age-related. It’s not an illness. It is just a normal change of aging—it comes with aging. Sort of like the way you don’t consider wrinkles a problem—it comes with aging, like gray hair. So there are certain changes within your body that mirror the changes outside of your body that come with aging.

MICHAEL BUCKLEY: That is good to know, particularly as it starts getting darker earlier. In many parts of the country it starts getting dark around 4:30 or 5:00 right now. That is a big change. A couple more questions. Alice from Maryland is wondering, for Karen, how many items are in your catalog at the Library of Congress for this particular service?

KAREN KENINGER: For our most recent formats, which is a digital format and digital braille, we have over 80,000 titles. That is the whole spectrum. Everything from mystery and romances to a lot of materials about people who have vision loss, their own stories, and a lot of informational materials.

MICHAEL BUCKLEY: Wow. That is fantastic. We are going to do one more question and then encourage folks to stay on the line for a little bit of a reminder on how to access these resources again. The question for Katherine Freund is from Anita from Ohio. She is wondering, in your driving services, do the people who give the rides help a customer with things, for example, at a store? Do they wait outside? How do the non-driving parts of the trip work with your service? 

KATHERINE FREUND: If an individual who uses ITN needs personal assistance, ITN will transport a friend or a caregiver with them at no additional cost who can help them with what they need. The drivers themselves are really drivers. You can ask your driver to wait for you—it does increase the cost of your ride because you have to pay for them to sit there and wait. But you can also schedule a return trip at a time and a location where you need it. There is no additional cost of that, and the driver will be there at that spot and pick you up and take you home.

MICHAEL BUCKLEY: Well, great. Before we conclude, I want to tell you about the December BrightFocus Chat, which will be December 21, 2015. Here at BrightFocus, we support some of the best scientists around the world who are studying diseases of mind and sight—macular degeneration, glaucoma, Alzheimer’s—and for our next Chat, we are proud to have several of the researchers who we support be on the call to give us an update on the latest research on vision diseases. The next chat, “Research Roundups: Treatments for the Future,” will be December 21, 2015 and we encourage you to register and submit questions in advance. We will be sending you a reminder email.

Last, and most importantly, we want to repeat the phone number and website where you can get some of this information. That is www.BrightFocus.org, and the phone number is 1-800-437-2423, and through that phone number we can get you in touch with both Karen and Katherine and the great services that they provide.

Just to conclude this call this Thanksgiving week, I really want to say thank you to Karen and Katherine not just for joining us today but for providing services that really transform the lives of so many people that are having vision conditions that may prevent them from being as mobile as they would like around their community or enjoying a great book or newspaper or magazine. I really want to say thank you not just for joining us on the call but for everything you do.

For our listeners, thank you for joining us today, and we hope you have a great Thanksgiving. We will talk to you December 21. On behalf of everyone at BrightFocus, thank you for joining us today, and have a great Thanksgiving. Thank you.

The information provided in this transcription is a public service of BrightFocus Foundation and is not intended to constitute medical advice. Please consult your physician for personalized medical, dietary, and/or exercise advice. Any medications or supplements should be taken only under medical supervision. BrightFocus Foundation does not endorse any medical products or therapies.

BrightFocus Foundation: 1-800-437-2434 or visit us at www.brightfocus.org. Available resources include:

• Free publications such as “Safety and the Older Driver.”
• Resource lists for people with macular degeneration.
• Resource list for people and their families with glaucoma.

Library of Congress’ National Library Service for the Blind and Physically Handicapped:  888-NLS-READ or 888-657-7323 or www.LOC.gov/thatallmayread. Resources include:

• NFB Newsline
• Talking books and audio magazines
• Telephone-based book clubs

Independent Transportation Network: 207-591-6939 or www.ITNAmerica.org.

• Rides in Sight: 1-855-607-4337 or www.RidesInSight.org.

American Automobile Association (AAA) website, www.AAA.com.