Bridging the Gaps: How Consumer Groups Can Strengthen Support for Older Adults with Vision Loss

Welcome to OIB-TAC’s monthly webinars, where our presenters share valuable information and helpful resources to support professionals working with older adults who are blind or vision impaired. Let's check out this month's webinar. 

All right, and we will go ahead and get started. Welcome again, everyone. I'm Jennifer Ottowitz with OIB-TAC, and it is my great pleasure today to welcome Jeff Thom from the American Council of the Blind, and Glen Crosby from the National Federation of the Blind to talk about bridging the gaps, how consumer, groups can strengthen support for older adults with vision loss.

So welcome, gentlemen. Thank you so much for joining us. Thank you.

We're just looking for Jeff to answer our first question about introducing himself and the organization, to share a little bit about its mission and its role in the blindness community. Okay. thank you very much, first, Jennifer, and the, and everyone at the OIB-TAC for having us here today.

My name is Jeff Thom, and I am repre- a- and I am old, which is why I am involved in the aging and vision loss community. and my, the organization that I represent is the Alliance on Aging and Vision Loss. It is an affiliate of the American Council of the Blind. Its, purpose primarily is to try and improve the wellbeing of older adults experiencing vision loss through a number of things, including advocacy, peer support, educating vision rehabilitation programs and other providers, and encouraging adults with vision loss, especially those experiencing recent vision loss, to maximize their potential.

in terms of our role in the community, I'm gonna wait until the next question because it gets to that, aspect of what we do specifically. thank you with that, and I'll turn it over to, Glen for his-

yes, sir. Good, afternoon. As, was announced, I am Glen Crosby, and I, have participated in the National Federation of the Blind for many years.

And right now, I serve as the president of the National Federation of the Blind Seniors. our, the National Federation of the Blind definitely believes that all blind people should live the life we want, so we worked, in that, capacity to help make that happen. The National Federation of the Blind Seniors, was developed, was organized for us to develop programs and to conduct activities which improve the lives of blind seniors.

And obviously, that is a broad speck- spectrum of activity. However, the biggest, the biggest gift that we can bring to any blind person, including our seniors, is the community that we have and the, that we share li- la... lived experiences with all of our folks who are interested. And, we spend a lot of time connecting seniors to resources so that they can find devices, tools, and services that they simply cannot find on their own.

So we spend a lot of time working in that capacity All right. Thank you, gentlemen. this is question number two, and we'll start with Jeff after I read it. Older adults experience vision loss under a wide range of circumstances. What programs, resources, or activities does your organization offer that are especially relevant to older adults?

So like the National Federation of Blind Seniors, since we are essentially a senior affiliate, although you don't have to be a senior to be a member, our programs are for the most part geared towards seniors. And let me, let's go through some of the programs and services that we offer. we've, we have, we do, as does, Glen's organization, we do an awful lot of information and referral, whether it be to, for our members or for individuals who may find us through any, many, different types of methods, and I get calls all the time from people in a number of, regions across the country.

We have a, website that, it, the website is aavl-blind-seniors.org. That's aavl-blind-seniors.org, and it is very rich in all sorts of information relevant to our community. All sorts of things from housing and recreation and, peer support, this, every- whatever you can imagine. We have, peer support calls.

We have both one in our California affiliate and one national, calls. These are weekly calls, that people can be a part of. We have a monthly community call, which is part of the ACB community, American Council of Blind community, and that is usually, our monthly call deals with a topic of concern to blind seniors.

For example, the most recent... actually it wasn't. About two, three months ago, we had a call from a, a professor at the University of Georgia, who has been at the forefront of developing protocols for diagnosing dementia among seniors who are blind and low vision, because up until recently, m- those protocols were generally vision based, and of course, that doesn't, help very much with our population.

and we also are involved with advocacy. We have worked very closely with the VisionServe Alliance and the Aging and Vision Loss National Coalition. We were, out front in trying to get the Older Americans Act amended to have far more references to the issues of concern to seniors with vision loss.

Unfortunately, we were not really successful in that area, but we keep pushing at it. Our most recent initiative, is to make sure that seniors in your local area, seniors with vision loss, are engaged with their area agencies on aging. There's a lot of programs that, that these entities and their senior centers that they fund have that seniors can take advantage of, whether it's Meals on Wheels, and low energy, and all sorts of programs.

And blind and low vision seniors, for a number of reasons, which I won't elaborate on, have not really taken advantage of those programs to the degree that we can. And so we wanna make sure that, these area agencies on aging and senior centers know who we are and come speak to our local chapters, a- and our local organizations, and that we become involved on, i- in their advisory councils, that they can learn about the needs of their blind and low vision, community members.

So that's just a few of our programs. Thank you

Okay, and the National Federation of the Blind, of course, Blind seniors can, connect with, other blind seniors as well as other blind people all across the country, to, learn what we are doing and h- how they can i- Include some of the things that we are talking about into their lives.

we also have a, a, a very dynamic website that, it's nfb.org, and you can find, seniors can find information, there, just about at any topic that they, choose. Now, I realize that a number of seniors have difficulty navigating, internet, technology, so if they would give us a call we can help them, with all of that.

So we're happy to do it. But in addition to that, we also, have regular national seniors conversations, and we have a variety of topics that we cover, so that blind seniors can know that they can continue to, do some of the things they did, when they, before they lost their eyesight. we also provide a number of training opportunities, hands-on training opportunities.

We're engaging in that, one of those this very weekend. And for the first time many of our seniors are, experiencing what it might be like or what it is like to use a white cane and travel around safely, and, we're t- teaching them those techniques. also we're talking about braille, h- the advantages of learning braille and how to do it, and how it can help you, in your daily life.

You don't necessarily w- need to read entire, volumes of books to benefit by knowing braille, so we're covering that. We also ta- of course talk about technology. That's the big topic of the day I suppose, and probably will be for years to come. Technology is everywhere and it's growing and it's, expanding enormously.

and, we wanted to help blind people, and we want blind folks to be able to use it. And then of course we also talk about, a little bit about cooking and how they can, pro- prepare, prepare meals for themselves and to how to organize their homes so that it's a little bit more, convenient for them.

And then, right now we are focusing on engaging with the Congress, trying to, we're asking the, the, Congress to include more appropriations for the older blind programs all across the country since those, funds, the funding level has been level for the last 13 years or so. So we are trying to get a, an increase in that funding, and we've been working diligently with our friends in Congress, and we hope to get that done sometime soon.

So we're asking all of our, senior population, fan- friends and families and so on to contact, their Congress folks and try to, help us push that, effort over the g- over the line. And, we're looking forward to, to actually getting more federal dollars into these programs. And that's just a, a little bit of what we do in the National Federation of the Blind Thank you so much, gentlemen.

It's so exciting all the, many opportunities you have for folks and the array of ways that you offer support. I know just a, a couple more to mention, and maybe if we have time later on we can expand on these. But just in general, the American Council of the Blind offers community groups, online community groups on a variety of topics for older adults or anyone with vision loss to join.

and in some states, NFB, National Federation of the Blind, offers their Silver Bells program, which is a, a training program, s- that includes some of the training Glen was mentioning, too. so many ways. But I'm gonna start with you, Jeff, just to share any other thoughts you may have about what needs consumer organizations help address that OIB programs maybe do not always have the capacity to provide.

Sure. before I do, I just wanted to follow up on what you just said. Yeah. If anybody would like to know more about the hundred types of community calls we have every week- Yeah. Sure ... they can get a list by emailing community@acb.org. And believe me, there's... I can't... You can hardly think of a topic that won't be covered-

by those calls. I wanted to. I, I think that, Consumer organizations have an important role to play, for people who are experiencing recent vision loss. avoidance of isolation is a crucial, problem, and by engaging with people in the community who are going through many of the same issues that you're facing, or have come through those issues, people have, that have recently lost their vision, oftentimes that they think that their life is over as they've known it.

And we can help, along with, counseling and other things, we can help to, change their attitudes in that, regard. of course, we've talked about the different types of calls that organizations have and the, like the training program that, that, Glen was just talking about, to provide knowledge, a knowledge base.

mentoring obviously, can be really important to people with vision loss. for, I ... Just an ex- as an example, in my local area, we have a, blind and low vision theater group. We put on a play every year, and we bring in a- and we include people experiencing recent vision loss, and it's amazing how they blossom when they get into some activity that includes, others like them

That's awesome. Thank you Don, how about you? Oh, one, one, program that we are very proud of is, we have a service we call NFB-NEWSLINE, and that's a audio newspaper information service, that, seniors and any blind and print disabled person can access through a normal regular telephone, or you can use, an app on a smartphone.

you can access it through the Alexa, system, the, the, Amazon system. And but also you can access it on some re- refreshable Braille devices. And we, have almost 1,000 different publications available to the subscribers, and it's available 24 hours a day anytime you want it. And, this gives, particularly seniors, 'cause I think most of us probably are used to using newspapers more than some of our younger friends.

But, nonetheless, there's many, newspapers, from all states. I think in Texas we have, 24 or 25 papers, available. Not to mention that once you get on the system, you can access any of the newspapers that are there. So if you're interested in a different newspaper, in a newspaper in a different state, you can certainly do that as well.

And it, it's very dynamic in the sense that you can choose the article that you wish to, read, or you can skip back to one that you think you might have want to read after you skipped it, it, it has a search feature for topics. you can search for all manner of topics if you, particularly if you have a, maybe a, a sports figure you like to, follow.

you could, you can find that, or you can set that up or, whatever. So it's, a very, interesting, great service that we offer free of charge. And, all that a blind person or a print disabled person needs to do is subscribe with our program, and you would do that at our national center, or f- you can go on our, website and also, subscribe.

So that's NFB-NEWSLINE. And we, also do, a, a number of sp- special training programs at our national center. We bring, teachers of blind students in, and conduct special, training programs for them so that, they can know how that we, that, we approach education for blind students, particularly, that we want them to have decent orientation and mobility, and we want them to be literate so that if they need braille, they're taught braille, and so on.

and those are s- we have a, what we call a Teachers of Tomorrow program. That's an ongoing program, and we bring those folks in regularly and, provide that, that view to them our philosophy. And, many of them, are very happy to, have come and been a part of what we do. We also have, mentoring programs for blind seniors and, we try to pair them up with, a capable blind person that they can connect with and, ask any question or perhaps just get to be friends.

A number of our, participants find themselves developing little, small book clubs if you wanna think of it that way, and they get together, on Zoom and, review the book of the week or the month or whatever, however how they operate it. There's several of those, under, that people are enjoying doing.

it is the community, and we, we do believe, that the blindness community is a wonderful, resource for any, particularly newly blinded person. But we all can benefit, throughout our lives, by connecting with other blind folks across the country and finding out what they're doing and how they're doing it.

in addition to that, we, We provide a number of scholarships for any age student, which means that some seniors receive, scholarships from our, through our scholarship program, 'cause some seniors do go back to school. And, so we're very proud of that, and we, certainly encourage, blind people of all ages, including seniors, the, to go and, to go to school if they want to, and, learn new, techniques or learn new, business skills, whatever they want to pursue.

and we do that through, a scholarship program. And this past summer, let's see, I think, 30 students were awarded $10,000 apiece, so it's a scholarship worth going for. And that, we could go on forever, but, I think maybe we wanna go to the next question. it's interesting, that you bring up s- stu- seniors going back to school.

We've been finding i- in ACB, and I'm sure it's the same, in NFB, that we're getting more and more older students. In fact, I, had a call the other day, through the Alliance on Aging and Vision Loss from a woman on the West Coast, 90 years old, and she wants to go back to school and get her master's degree so she can educate people about how blind people can be independent.

And, will she... will that... will, it happen? Will she succeed? I don't know. But the fact that she's wanting to do that, and she lost her li- vision later in life, so she... I- it's just amazing, and I'm like, "You go, girl." I'm... I just think it's great to see these older students who, have the yen for not only for their own education, but to continue, serving, their, the population

That is fabulous. That's so great to hear We, had a gentleman a couple of years ago, at his advanced age, wanted to, learn how to be a diesel mechanic, and so we helped him get involved in that, and he completed it. Yeah. So he was very happy about that. I don't know if he's a- actually using it, using his, his skills now to earn any money or not.

I don't... I haven't heard from him in a while, but, I thought that was interesting. That'd be cool to do a where are they now. that'd be really cool. All right, the, the next question. On this one we're gonna start off with Glen. I know that this will be back-to-back speaking for you. number four would be, what are some common misconceptions about consumer organizations that OID professionals or consumers may have?

I, I think, a number of professionals do not realize the importance of, the connection that's available to, blind folks, e- especially newly blind people. We, we get calls from families, wondering what, their loved one who maybe just lost their eyesight can do and the, and so on.

So we, I think very often the professionals don't realize the importance of those, experiences that the, that we, that they can, enjoy, if you will, by connecting with other blind people. Not saying that they have to, associate exclusively with blind folks, but, if you don't know any blind people at all, it's very helpful for, those folks to first of all address the issue of isolation, and secondly, to learn how to do some things in their lives to help regain their independence.

So I... that's a key one in my, in, in my view

I think fr- from the consumer side, I think one of the biggest ones is that, there's so much fear of blindness. I think I've seen research that says that after cancer, blindness is one of the things that people fear most. And I think that it's almost like, if I associate with these people, I'll become blind, I'll become more blind, or I'll...

It's like a social disease, and I don't wanna have that, so I'm gonna stay away from them. whether that's a misconception or h- exactly how you'd characterize it, I think that's one of the difficulties, that I think consumer groups have in connecting with these people, and you have to get beyond that at the beginning.

And, when you do, then they start realizing, oh, life isn't over yet. I think from an organizational side, in terms of the blind professionals in the field, I think there's a, I guess these are interrelated, but, I think one misconception is that, we, are generally, en- engaged in a- adversarial, advocacy against such organizations, whereas I think i- in the main we wanna work with them.

Yet there are times where we will have views that won't be exactly the same and entirely in line. But I think, I, I don't think we are at all, adversarial toward them, because we realize how important the field is. I think, and I think along with that, as I say interrelated, is the fact that we want to work together.

We want to make sure that, and we know that our advocacy will go better if the field works hand in glove with the consumer population. We'll accomplish so much more, if we get together and act in a unified manner. and finally, I think that, I think there's some ki- there's a view that consumers don't necessarily understand the concerns, the problems that the, blindness field have.

And of course, we don't understand everything. we're all in a different space to some degree. But generally, we understand the limitations that the field have. We understand, that funding is a problem. We understand that staff shortages are a problem. I, I think that a- an organization like the OIB TAC serves such a good purpose by bringing the field and consumers together.

So thanks for the question. Thank you, Jeff, and I love the idea of the spirit of, you know, working together to help advocacy efforts strengthen and go farther. I appreciate you guys already sharing some examples. I wanted to give you another opportunity just to share a brief story or example about an older adult whose quality of life was improved by participation in your activities.

So Glen, we'll start with you. I've told you about that we do training programs. So we had a participant partic- take part in one of our programs a couple of years ago, and I don't know for sure how long he had, been blind, but we think of it in, recent terms. Maybe, two years, maybe three years, something like that.

and so he, came along and seemed to enjoy the program just fine, and he went home afterwards. and I think he sat around for a few days, but then one day he just got it in his mind that while his wife was at work that day, he was going to bake some cookies, and he was gonna use some of the skills that we taught him and some of the tools that we taught him that he could do and modify and so on.

and so he successfully baked a batch of cookies and presented them to his wife when she came home from work that day. Now, I will tell you, he did not tell us this story, but she was so excited about it that she told us about this, that he had done this. And so that's just one very small story that I think, sh- demonstrates that what we do makes...

I- is meaningful in blind people's lives So yeah, I'll tell one that's, different but similar in terms of its ultimate result. and this, occurred in our California affiliate through the Alliance on Aging and Vision Loss. They have a peer support, a weekly peer support group of their own, and they had a woman who had lost her vision, her usable vision.

She was an accountant, and she lost her job, and she figured she probably would never be an accountant again. she was not... She was a Department of Rehabilitation client, but she wasn't really getting services. So we advocated for her to make sure that she got the services she needed, computer training, other things.

there were also cultural issues. Her husband, didn't want her to cook anymore or to do other things. He felt that a blind person could not do that. Worked with the family, and she's now, cooking again. She i- is not back to work yet, but she is, realizing now that yes, maybe she can become an accountant again.

and I think that's a real, successful story, and there's no telling how far she'll go Yeah. Those are, the stories that more and more people need to hear. this is, question number six. Looking ahead, what opportunities do you see for stronger collaboration between consumer organizations and OIV programs to better support older adults with vision loss?

And Glen, we'll start with you. I, I think that, the, the tech is a good start, with what the, what you guys do here or what we all do together since I volunteer on the advisory, council. and, so I think that's a good start, but, I think sometimes it gets lost as it goes down, the chain, so to speak.

And, I would like for, it to be easier for, blind seniors to learn about the programs that, that or- that exist. and again, we don't mind doing the referral, but, it's very difficult for newly blind people to g- to find some of these programs. So I don't know the solution exactly, but I do think working together we could found...

we could find a solution, so that it's easier to access some of these programs. I also think that, the, professionals in the field could, engage more themselves with, consumer organizations and, some do. Some do, but, many of those folks, they have families of their own and they don't wanna give up, up more time than they do already.

But if they could find a way to, engage a little more and get to know what we do more, than they do, would be very helpful. So th- those... that's the where I go with that. Yeah, so there's, a number of ways in which it is important, and I would say absolutely essential, that the consumer organizations and the provider organizations do a better job of collaborating on advocacy.

sources of funding, are-- Some of them are getting tighter, and some of them are ones that we've just never appropriately explored. For example, people with disabilities, they have lots of money through the Medicaid program that funds home and community-based services. And yet very few states, a handful, but very few, use Medicaid money for services that are provided under the OIB program, like, O&M services and technology services.

And this is another pot of money that we should be working toward getting a share of, and that can expand the money we get for OIB. Because we know, even though both organizations and, groups are provid- are seeking more money for OIB at the federal level, we know it's probably not gonna happen in the near term.

It's probably gonna take a while and active. Medicare, we need to be working harder together to seek more money through Medicare. There's-- And w-we're happy to help in AAVL people at the state level that want to advocate together between the provider field and the organization. we are working much more closely in recent years with NFB, and, we're just thrilled that is happening.

so there's a lot to do, but there's an awful lot more to do. So thanks for the question. Thank you, gentlemen, for all the thoughts and suggestions. And our last question, and, we'll, stop the recording after this and open it up to questions from folks. But the last question to both of you is that if participants remember only one thing about today's webinar, what would you like them to know about the value of consumer organizations?

And Glen, we'll start with you. very good. I, I think we've tried to explain to you, already the value of, what we can do. And so one thing you can do, on an ongoing basis, and some, some programs are doing it, you reach out to us, for help. we, we... That happens on a regular basis.

Sometimes, we get calls from, professionals o- in various fields, but, all connected to a blind person in one way or another. there's actually, An optometrist in the Central Texas that calls, the Older Blind Program regularly 'cause he has a, a customer, patient that, needs more than what he can provide.

I think that, w- that we can... We are a resource to a lot of, other programs that are out there and a, a lot of other services. And w- I encourage, folks to use us as a resource. And, the other thing I think that can happen is that the, we can have discussions with staff, people, so that they know a little bit more how to, be respectful to blind people and to, to know how to engage with us a little bit.

I can tell you from personal experience, working with the, say, the medical profession, for example, everybody intends to be very cordial and very nice, and they are, but on the other hand, they have very low expectations. I had one nurse ask me, for example, did I need for her to remove my shoes for me, and things like that.

And those are... And I get it. I understand that, they're, this is not part of their formal training, but I am saying that perhaps we, all of these programs can... we could help out with that. And there's materials available to, to help with it, but also we have s- we have individuals who can help with, who help also I guess if I had one thing I would want to impart about consumer organizations, it would be that the role models that we provide through interaction between people experiencing recent vision loss and people who have had, gone through that struggle through most or all their lives, we are h- sh- give the best chance of enabling, people with new vision loss to realize that blindness is not the end, it is just a new beginning

Love it. Love all the, the closing thoughts. So thank you so much, gentlemen. 

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