Thank you so much to everyone who was able to join the October 23, 2020 AFB Town Hall on the impact of COVID-19 on access to healthcare, transportation, and voting for Americans who are blind or have low vision. The archive is now available, for anyone who missed the live conversation or wants to revisit the information. Resources from the first AFB Town Hall are also available.
The Town Halls contain a wealth of information on timely topics important to those with visual impairments, family members, educators, employers, policymakers, and anyone else who is invested in accessibility and inclusivity for those with vision loss. You can read the entire report at www.afb.org/FlattenInaccessibility.
Transcript
John Mackin: Good afternoon, everyone. This is John Mackin, Public Relations Manager for the American Foundation for the Blind. Thank you all for joining AFB's first of three town halls, intended to engage in dialogue sparked by the Flatten Inaccessibility and Access and Engagement reports. And with that, let's jump right into the first town hall where we'll be discussing healthcare, transportation, and voting. Dr. Rosenblum, take it away.
Dr. Penny Rosenblum: Well thanks everybody for making time this afternoon. I know we all spend a lot of time on Zoom meetings these days, and in this sense this really give us an opportunity to come together and support change for people with visual impairment. And the Flatten Inaccessibility report, which is the impetus for this town hall, is a vehicle that we hope each and every one of you is using or will be using shortly to affect change for those with visual impairments. I planned a very short presentation and really want to spend the rest of the time with questions and answers.
All right, so, what is this Flatten Inaccessibility study? Hopefully you've had a chance to go to afb.org/FlattenInaccessibility and view the report, it's there as an accessible PDF. It's also there as a web page where you can go to multiple sections in any order that you wish and share those sections; if you're speaking with somebody around healthcare, make sure you share the healthcare section. The overriding question that guided the study was: how has the COVID-19 pandemic impacted the lives of adults with vision loss in the United States? And we have the Flatten Inaccessibility logo. And basically it's a curve that is above a little curve. You can see the idea is we're trying to flatten this curve and there's a little stick figure representing humanity.
The collaborating organizations and companies behind Flatten Inaccessibility came together very quickly, basically about three weeks at end of March, the first week in April. And these 16 organizations and companies tweeted, emailed, blogged, and shared about the Flatten Inaccessibility study. So we had ACB, AER, AFB, Aira, APH, Be My Eyes, COSB, Humanware, Johns Hopkins University, the National Federation of the Blind, NOAH, Objective Ed, Prevent Blindness, The Professional Development and Research Institute, VisionServe Alliance, and Vispero. We also at AFB want to thank our town hall sponsor, The James H. and Alice Teubert Charitable Trust, and also JPMorgan Chase & Co. So, thank you to both of those sponsors.
All right, let's get down to business. So, we want to know: how is COVID-19 impacting those with visual impairments? Now, this study was open in April from the 3rd to the 10th, when you could not find toilet paper easily; when we were learning about wearing masks and we were wiping down our groceries; when communities were beginning to cut back or cancel services related to transportation; and when there were long lines for drive-up testing COVID sites, if you could find one.
We had 1,921 U.S. individuals over 18 who participated and they represented all the states, Washington, D.C., and Puerto Rico. 59% of this group were congenitally visually impaired. So we are skewed in that congenital visually impairment group. We are also skewed as far as our participants being white with 74%. So, I want you to keep those two things in mind as we go over the data. We had 63% of the participants were female and 42% were over the age of 55. We asked if the people taking the survey had one or more additional disabilities or health concerns, and 45% of the individuals reported that they did. So, that's just a little snapshot of the demographics.
Now, the survey tool itself was divided into 11 parts. Everybody did the demographic and technology sections. People could choose to skip questions, but those were made available to everybody. After that, until we get to the last couple of questions, we had healthcare, transportation, employment, your education, education of your K-12 child, social experience, meals, food and supplies, and voting. At the beginning of each of those sections I just read, participants were asked if they had concerns about that area due to COVID-19 and if they were willing to answer questions. For each section, there was a small number of participants who said, "Yes I have concerns, but I don't want to answer questions on this topic." So, they were skipped to the next section.
We have two pictures. We have a man in his 30s wearing his mask using his cane. He's white, he's walking down an urban street and he's— sorry, a suburban street, and he is holding a toddler in his arms. And we have an Asian woman who is using a smartphone to make a choice of what groceries to have delivered.
All right. So I want to have just a minute to tell you a few things about each of the three areas and then we are going to open it up to questions. So as I said, participants could choose whether or not they wanted to answer questions about healthcare. So of the 1,921 participants, 1,010 or 54%, had concerns about healthcare and were willing to answer the COVID— the questions because their concerns related to COVID-19. Now, throughout the survey, we gave people what we called concern statements. So these were statements such as "I'm concerned that I will not be provided adequate healthcare because of my visual impairment," or something to that effect or "I'm concerned that I can't get my medications because of the impact of COVID-19."
People rated those from strongly disagree with a rating of 1 to strongly agree with a rating of 5. So we averaged all the ratings we received and we got a mean or an average. So the means were the statements were over 4, meaning between agree and strongly agree with the statements, 7 out of 17 of these concern statements had a mean over 3.5, and only one over 4.0. So people have concerns. I would anticipate if we did this survey today, there would be more concerns because at the beginning of April, things were fairly new with COVID and many of us did not have somebody in our personal network who had COVID or had unfortunately who had died from COVID.
So topics that really concerned our participants were access to healthcare, medication and healthcare supplies, healthcare not related to COVID-19 (especially eye care), access to COVID-19 testing and access to healthcare if one has COVID. "How am I going to get to the hospital?" So those five areas of concern were ones that participants really recognized as impacting their lives.
Now, in the area of transportation, we actually had more people who had concerns about transportation than healthcare due to COVID-19. So we had 63% of the participants or 1,162 who answered the questions about transportation. There were 11 concern statements such as, "I'm concerned about my safety on public transit. I'm concerned about how I'm going to get to a COVID-19 test site." And for 7 out of 11 of those concerns, the mean was over 4.0. So between agree and strongly agree. So, people had more concerns — a higher level of concern about transportation in April than they did about healthcare. Topics of concern included transportation to healthcare, safety when using transportation, and the impact of policies and schedules. And this would include rear-door boarding, which many locales implemented for public transit.
Now, let's talk about voting which I know we are all inundated with right now – and I don't know about you, I'm ready for November 3rd. This group of participants, the 1,921 individuals who took the study, had a very high rate of registration— registering to vote. So we actually had 91% of 1,625 individuals who answered the question about are you – sorry, let me restate that. Of 1,790 participated who answered the question, 1,625 or 91% indicated that they were registered to vote. We found that for 616 of those 1,790 participants, okay, or 25% roughly, that they did not know how to vote accessibly. So they lacked that information. Now this group was folks with low vision, folks with total blindness, so we wanted to know how people typically voted. Not around COVID, but how do people typically vote. And 41% said that they used some type of accessible ballot marking system; 28% already voted by mail; 18% went to a polling location with sighted assistance; 9% were at the polling location with no assistance; and 4% said that they routinely do not vote. So, we ran the gamut in how people voted.
Now, I know I've only touched the tip of the iceberg with healthcare, transportation, and voting. So, I'm really encouraging you to go to AFB.org/FlattenInaccessbility to look at the report. We also have a link to a blog post that I wrote with our AFB staff about five ways that you can use the Flatten Inaccessibility report yourself, from writing a letter to the editor to contacting your local government official about an issue that's important to you, to offering to give a presentation to a local civic organization and we give you a couple other ideas in there. So, the idea with Flatten Inaccessibility is not for us to shelve this, but for all of us to work together to improve things for people with visual impairments. So, I'm gonna turn it back to John Mackin and ask him if he could please give us some questions.
John Mackin: Thank you, Penny. Let's begin with...let's begin with a comment. Someone says, "Just to point out that many of the problems reported existed before COVID and solutions still need to be found."
Dr. Penny Rosenblum: You know, I 100% agree with the individual who shared that comment. And I have been saying this all along. Flatten Inaccessibility has really identified some systemic issues, meaning that they were here before we had COVID. They were here in January, they were here a year ago in January. They were here maybe for decades. For example, not all apps and websites are fully accessible for people who use screen readers. Or people like myself with low vision who is like, "Where is the button? I didn't know there was one on this site." And what COVID-19 has done, and the Flatten Inaccessibility study has given us a voice, has given us 1,921 people that have had shared experiences, that we have some data that really talks about what are the issues.
You know, if you want to go to your local grocery store and you want to say, "Hey, your app isn't accessible." And they're like, "Well, that's just your problem, lady." You can say, "No, let me share this report with you." And a section that talks about technologies which is our topic next week for our Town Hall number 2. And give you an example. Or with telehealth: 20% of the people who use telehealth apps said they weren't accessible. Those same 20% would have had an unaccessible telehealth app before COVID. But weʼre starting to use telehealth apps more now. They need to be accessible. So thanks for that comment, whoever made that. Excellent point.
John Mackin: Thanks Penny. Next I would like to ask a question in the healthcare category. "What kind of health information were people unable to access, and what is the solution?"
Dr. Penny Rosenblum: Wow, another great question. I love the fact that people are asking what the solutions are. So, thank you for submitting these questions. You know, one of the big issues for people with COVID-19 was the fact that they couldn't get COVID-19 data. So, things being flashed on the television, websites that have the map for your county or your state that don't have an accessible version, don't have a table that's formatted for a screen reader, using poor color contrast, whatever it may be. So that was one big issue.
Another issue was pharmacy apps that some of our individuals— we had a very high level of people who were technology users and many of them were already getting their medications delivered through apps. But some people had to learn about those apps, and get them set up, and were finding that they were having challenges with that app. And then finally, the thing that really surprised me, John, and our audience, was that we had people who didn't realize that your pharmacy can put braille or large-print labels or you could use ScripTalk with getting your medications. And so I had a couple people who wrote in, "I didn't know you could do that. Thanks for sharing! I'm going to reach out to my pharmacist." So that was a really good questions. Thanks.
John Mackin: Thanks for that, Penny. I'll jump around a little bit categorically speaking. "What are some of the immediate impacts COVID has had on transportation?"
Dr. Penny Rosenblum: Yes. This was one honestly that we heard a lot of people talk about. Probably the biggest challenge was routes being canceled with no or little warning. Or the notice being posted on a website or app that wasn't accessible so that people couldn't be able to find out that, "Oh, all of a sudden bus number 7 has gone to a Sunday schedule and not every 15 minutes, now it's once an hour." So, that was one issue. The fact that to keep drivers safe, many municipalities instigated a back door boarding policy so that passengers needed to board at the back of the bus where there are these large steps and no ability to talk to the driver, many of our participants - I mentioned 45% - reported another disability, arthritis, wheelchair users. And so, they had difficulty if they could get up those steps. So, those were some of the challenges in addition to apps that weren't accessible for the different transportation companies.
John Mackin: Thank you. I have one here that is probably on most of our minds. "What if we get a second wave, a second wave of COVID? I'm afraid my doctor's office will close and I won't be able to be seen for my glaucoma. What should I do?"
Dr. Penny Rosenblum: Yes. And we've heard this. We had several people - we were in wave one when this data were collected - that had eye care needs or cancer-related needs, some type of illness, and weren't able to get the treatment that they needed either because they couldn't get to the doctor's office because they didn't have transportation or because the doctors office was closed and so they weren't able to get that eye care.
One thing I think is important while we're kind of in between this first and what we're anticipating to have is a second wave, is for you to communicate with any of your healthcare providers, whether it's your eye care provider around your glaucoma, or around your heart or your diabetes, and make sure that you have a plan. Do you have the medications that you need? Are all you're orders up to date? Will your insurance company allow you to get medication ahead of time so you have that supply on hand? Is there— does the pharmacy deliver? Can you sign up for mail order delivery if you're not already doing that for your medications? As far as getting monitored for glaucoma, that's a really tricky one because that's is an in-office procedure. So I would make sure that you talk to your eye care provider and make sure that you know the symptoms that would necessitate you needing to seek emergency care. Thanks.
John Mackin: Let's go back to voting for a second. "Who usually helps individuals fill out their vote by mail ballot? Or how do people — excuse me — how do people do the voting ballot?"
Dr. Penny Rosenblum: You know, I think again: visual impairment is a continuum from those with low vision to those who are totally blind. So some of this depends on your individual level of vision. If you have enough vision to use magnification, whether that's a video magnifier or a hand-held magnifier, that's an option. I know one individual who xeroxes, copy machines her ballot so she can enlarge it and then just counts, you know, "I want to go to the third circle on the left-hand side" and fills that in. I know of individuals who will use a service such as Aira, which is a visual interpreting service, or Be My Eyes, which is volunteers, to help them get access. Many individuals, if you're comfortable with a family member or a friend, will rely on somebody else.
But voting really is a private, independent thing, and that's why it's so important that we let our voices be known at the local level because that's where voting decisions are made to ensure that there are accessible ballot options that we can do from home and we can do in the polling location. So we can't let it go on November 4th; we really all need to work on this so by the time we get to the next election, we've each seen improvements in our own locale. Thanks.
John Mackin: By that same token, "Do all polling locations have to be accessible?"
Dr. Penny Rosenblum: I'm glad you guys asked that question. And I was kind of anticipating that somebody might be interested in this. So by law, yes, under the Americans with Disability Act, polling locations need to be accessible. But we pulled up in anticipation we might get this question, that in 2017 a Government Accounting Office study looked at 167 polling locations across the country. And they only found 29 out of 167 were fully accessible. What they found was that 48 had fully functioning accessible voting systems that could accommodate people privately voting. So, this is where you go to a system, it's gonna read to you, if you want it's gonna enlarge the print if you want, there's buttons, you know, circles and squares and triangles that are easy to be felt. So, if you don't know braille or braille isn't your medium, you have a way to move around that ballot and to make your choice.
They found that 70% of the accessible voting systems weren't even set up or turned on and that 8% of the officials interviewed said they did not receive any training on how to use these accessible voting systems. So yes, they might be there, but they might not be working or they might not be accessible. And we really found a couple of our participants had concerns about that. So one of our participants, this is actually a quote from the study, "I voted in the primaries, but the polling place did not have a ramp. They offered to bring the portable voting booth out. They would only do that if I parked — sorry — they only would do that if you parked your car in the designated spot. Since we got dropped off by Lyft, we did not have a car. So two citizens from the voting line outside had to help lift my wheelchair onto to the curb." That's totally unacceptable in 2020. We cannot assume, A: that everybody has a car. B: we cannot deny somebody access to a portable, accessible voting machine. That is so wrong and infuriated our research team when we read quotes like that. Thanks, John.
John Mackin: Thank you. And we're getting some good questions in the chat right now, so I'm going to jump over to that for a second. Forgive me if I misread it, I'll correct myself as I go. "Aren't there people at the voting sites that can help fill in as long as there are two people from the two different parties?"
Dr. Penny Rosenblum: Voting— people who are volunteers at voting sites are trained in the voting procedures. One of our staff members, Sarah Malaier who has volunteered to be at a polling site in the Washington, D.C. area next week, said there was very minimal training that she just went through around disabilities. Here in Pima County, Arizona, where I live - I live in Tucson - I have two friends that are volunteering next week and I asked both of them, "Hey, did they teach you anything about people with disabilities?" My one friend said that they mentioned that there's a machine but that they don't typically set it up cause they never get anybody for it. And my other friend said they show would us about a 1-minute video. So...
John Mackin: Still more great questions and comments in the chat. So I'm going to also read a comment or two now. One person points out that Aira is offering a special to help people vote. And our colleague Liz shared that information in the chat feature. And we have another nice comment that, "I know some states like Oregon offer the ability to accessibly vote over the computer, but you still need to sign up— I'm sorry, but you still need to, you still need help to sign it after printing, which doesn't account for addressing the envelope." And they also points out taking examples from other nations. New Zealand lets you do anonymously over the phone verbally.
Dr. Penny Rosenblum: Yes, I think we have a ways to go and the challenge in the United States is that there's no national voting law. Each state makes their own policies and then those are implemented differently within each locale. So, this is where I think using your experience as a person with a visual impairment or if you're an individual who works with people with visual impairments, and pointing to the voting section of Flatten Inaccessibility, and sharing that with your local voting Recorder's Office folks (probably maybe wait 'til December), and making an appointment and saying, "I want to share my experiences as a voter in this community. I want to share this national data with some of the recommendations that are made."
And I didn't mention that early on, but in each section of the report - so in the healthcare, transportation, voting and then the other sections I discussed - we do provide recommendations. So, we're giving you concrete information based on the data that are recommendations that we are hoping all of us will work together to get implemented. Thank you, John.
John Mackin: Thanks, Penny. Going back to healthcare for a moment. "What should be done to give people access to walk-up or drive-through testing?"
Dr. Penny Rosenblum: Yes. This was a really big one and people really expressed concern about it. Let me read you a quick quote because I like to hear the voices of the participants. "I'm not sure how I would get to a mobile testing site. I wouldn't feel comfortable using public transportation or ride share services for fear of backlash for spreading COVID-19."
So, this has really been a challenge and continues to be a challenge. One of the things that I think we need to advocate for as a community is at-home testing. That locales need to have in their healthcare plan, that the CDC, the Centers for Disease Control and Prevention, needs to put in language to really encourage health departments, and funding needs to be appointed by Congress so that those who cannot safely get themselves to a test site have the option for the test site to come to them at home. And this is really a problem. We had one participant in the study who was an older participant, I want to say over 75, who had actually spoken with her insurance company to come up with a plan on how she would get tested and how she would get to the hospital if she needed healthcare as a visually impaired person who was a non-driver. And I don't have a simple solution. I hope we're all gonna work together to create solutions and make our voice be heard.
John Mackin: Thanks, Penny. I'm going to go back to the chat for the a moment. It seems like most of these participants are really interested in the voting aspect. So I'm going to read a comment and then a question and then there are a couple more that I'll jump to. One participant says, "I went to my polling place with my mother and voted early. The audible voting system didn't work for me, though the election officer said she was trained on it and it worked for her. My mother had to read the ballot for me. I contacted the Election Protection Hotline, but is there anything election offices can do to ensure that the audible voting system works properly?"
Dr. Penny Rosenblum: You know, I don't have an answer for that one. I would really encourage you to follow-up with them after the election. Is it a matter of that individual needed more training? Is it a matter of the directions that are given to you as the voter aren't clear enough? I don't have a good one for that. But you're not the first person we have heard that from.
John Mackin: Another participant points out on this same topic that the National ADA Center has a webinar on voting.
Dr. Penny Rosenblum: Yes.
John Mackin: And I believe she also shared the link in the chat.
Dr. Penny Rosenblum: Yes. And there's — sorry, I've got lots of paper here trying to be organized. But there's a report that was put out, and I'm looking on that just real quickly. I had that here and highlighted. But there's a report that Sarah Malaier, our public policy person said is a good report for us to know about. And Liz, I'm going to ask you if you can put that in there. And that is the AAPD put out a pretty comprehensive resource on disability voting practices. And so, that is AAPD.com and then if we could locate that report and put that in the chat, Liz.
So, there are some resources out there. But I think the important thing that we all need to focus on is it's really easy after November 3rd to let this go into the next election. And all of a sudden it's like, "Oh wow, things aren't accessible." I really encourage folks December, January, February, let's work with our local communities and our consumer organizations would be great leaders on this to ensure that we can get some changes in place before the next election. Thanks, John.
John Mackin: Thanks, Penny. "Some hospitals or doctors won't let someone come in with you. This scares me. What can I do?"
Dr. Penny Rosenblum: Wow. This really scares me too. And we also have doctors offices saying, you know, "Wait in your car until it's time for your appointment." And that has become an issue for people as well when you don't have a car. I got to stand outside in 105 degree weather for 20 minutes when I had an eye doctor appointment and they weren't letting people in until their time. I think one of the things with needing somebody to come in with you, it's really important to call ahead and explain why. Not just, "Hey, I want my friend, my spouse, my neighbor to come with me because I get nervous in the doctors office." But what specifically will this individual help you with access? Filling out the forms? You know, letting— reading to you the brochure that they're going to give you about the surgery that's coming up. Helping you locate where the radiology office is where you need to go down five different hallways to go get your X-ray taken.
So, if you can let the healthcare folks know why you need somebody to come with you. And if they're saying, no, then they absolutely can't, then you need to really say to them, "Then I need a staff member who can do these things with me, for me, assist me." But if you just show up with the person at the door, you're putting stress on them because they have a protocol that they have been told to follow by their administration. So, if you can work that out if at all possible ahead of time, and the solution is. If there's no way they're going to let you bring somebody, and there's no way that they're going to provide help to you, I suggest that if you have a device, a phone or an iPad or an Android tablet, that you get Aira app or Be My Eyes app set up on that ahead of time, do a little practicing at home. Find something in the refrigerator, something low stress, so that if you need to bring on a person to assist you, that you're familiar with how to use that app and then you can help get that person to help you. Aira is doing 5 free minutes, Be My Eyes is free.
John Mackin: Thanks, Penny. Here's a good one and it's related, both healthcare and accessibility. Regarding healthcare, "Do any of the key federal agencies tracking COVID-19 and offering COVID-related health and medical guidance have accessible websites? If not, have they tried to change them during the pandemic to make them accessible?"
Dr. Penny Rosenblum: I do not know about that specifically. I will tell you I had a very positive conversation with the New York City Mayor's Office has a group that focuses on New York City residents that have disabilities, not just visual impairments. And they were spending long and hard hours and money to work with their vendor that develops their software for COVID-19 statistics to get those accessible. And 7 months into it, even though they had started at the beginning of the pandemic, their statistics on their website were not accessible and they knew this.
And that really raised a question, conversation when I was speaking with these folks in the New York City Mayor's Office on Disability about the fact that it really goes back to when these systems are being designed. Which I know doesn't help us as visually impaired people. But if we could advocate, as visually impaired people, with companies that are designing the tools that governor's offices, hospitals, the CDC, whoever is using, that they're inclusive from the beginning and not that we're trying to go back and do a fix at the end. We're going make them better for everybody, not just our community of people with visual impairments, but other people as well.
So, this is where I really think our advocacy work is so important and why we need to gather together and we need to use the data in this report to really support the changes that we want to see on both systemic issues and COVID-19-related issues because they definitely overlap.
John Mackin: Thank you. And I know I'm jumping around a little bit topics-wise, but I just wanted to share a good comment. This goes back to voting. "If you experience any accessibility issues on the day you vote, contact your State Protection and Advocacy Office. They can offer day-of legal assistance." I think that's really good information for the audience.
Dr. Penny Rosenblum: And John, while you're looking for a good question, I do want to mention that our October 29th town hall (same time, 2-3) we're going to focus more on employment and technology. And then on November 10th, (again, 2-3 eastern) we're going focus on education across the life span. And some of you may be aware that AFB took a lead role in the Access and Engagement Study. This examined how COVID-19 is impacting education of children with visual impairments. And that report will be out next week on our website. We already have the executive summary up, and that's afb.org/accessengagement. Liz will be putting that in the chat for you right now. And we're also getting ready next week to launch the second Access and Engagement webs— Survey. So if you are somebody who has a child with a visual impairment or a professional who works with children with visual impairment, is a TVI or O&M instructor, be looking for those next week. How are we doing on those questions, John?
John Mackin: Here's another one, let's keep it to voting. "I worry that those of us who are high risk for COVID and blind are being left behind when it comes to voting. We are unable to vote in person and many states require printing and signing, which I don't think is truly accessible. Many don't have printers at home. I'm lucky to have a friend I trust to help fill out a mail-in ballot. But what are the other solutions? What other solutions are out there to help make sure other high risk individuals can vote?"
Dr. Penny Rosenblum: Wow. Well, I think you named the first one which is, if you have somebody who you trust to assist you with the ballot process. At this point with the election next week, I don't have a real answer for you...to, you know, they're so picky on how you fill in those little circles. I'm not sure how successful you would be with Aira or Be My Eyes, but that might be an option to try as well. I definitely would let my county recorder, voting office, and the ADA office know the challenges that you're having. But as far as getting your vote counted, the only other thing that really comes to my mind right away is, if you are voting in one of the two main parties, the Democratic or the Republican Party, maybe reaching out to your local office to see again if there might be somebody who can assist you. But then that's somebody you don't know and that whole trust/independent factor. So I'm sorry, I don't have a good answer to that. And that's part of our problem here.
John Mackin: Well, that is what we're working on here. I have one here. It's a little bit more of a broad strokes. "How does lack of transportation impact healthcare and voting access?"
Dr. Penny Rosenblum: Yes. So, I think as we're saying, lack of transportation, if you don't have a safe way to get to the polls, let alone feeling safe when you're at the poll, that's obviously impacting a right that you have as an American citizen, which is to participate in elections. And that is definitely something I would be talking to my local voting officials, my ADA Office, about. And I would be staging a complaint. As far as transportation to healthcare goes, many of our participants talked about the challenges of getting to the doctor's office or getting to the pharmacy. I didn't pull up a quote, but there's a quote from a woman who's basically said, you know, "I called the pharmacy and explained I was blind and could they please deliver this specific medication that you have to come in for." And they said, "Well, our drive through window is open so please come to the drive through." And the participant is like, "And exactly what car am I going to do that in?" So this is really challenging. I would suggest with healthcare, if it's access to medication or access to the physician or another healthcare provider, to reach out to that office and to explain. I might also reach out to a local group like a church that might be providing rides or a Lion's Club. Lion's Club's mission is to help people with visual impairments to see if a member might be able to loan assistance to you.
John Mackin: Another suggestion for you, though, Penny. "For trips to the hospital, contact their risk management office to explain your needs. More so for non-emergency trips." But good tip there.
Dr. Penny Rosenblum: Yes, definitely. Thank you participant who shared that.
John Mackin: "In many states, lawsuits have been brought and the desired result is to be a— to vote and submit your ballot electronically. Unfortunately, very few states allow this. But do your research. Your state may be one of the few."
Dr. Penny Rosenblum: Yes. And I think we have a lot of lawsuits going on around voting right now. As a matter of fact, one Alabama lawsuit just went to the Supreme Court this week and curbside voting was struck down by the Supreme Court, which to me was just very upsetting.
John Mackin: We have someone here, this is somebody sharing their story. This concerns voting accessibility. "My wife Joanne and I voted but mail last week. She is sighted while I am blind and have little use of my hands. We are locked down indefinitely in a nursing home. Joe had to fill out my paper ballot, witness, and mail it. Is there any thought on accessibility in my case?"
Dr. Penny Rosenblum: I know who you are, I think we have emailed. You know again, I think it's that idea of use the Flatten Report, use your personal story, share that with the local voting people, the Office. Consider writing a letter to the editor for your local newspaper to let them know what your challenges were. And advocate for electronic voting if that would be what you believe would be helpful to you.
John Mackin: "As a follow-up, what does AFB consider the best resources for accessible healthcare data regarding COVID-19? Is this the best website? Or do you suggest others as well?" And there is a URL that looks like it reads cvstats.net.
Dr. Penny Rosenblum: I was going to suggest the CDC website. On our original Flatten Inaccessibility page - I know the chat's not accessible, but Liz, would you— on our original FlattenInaccessibility.com which was a website that Aira sponsored for us, we did have a link to accessible COVID-19 data. So we'll get that in the follow-up, please.
John Mackin: Speaking of follow-ups, the most recent question asks, "Will there be a second follow-up second data collection for Flatten Inaccessibility? A lot has changed since April 2020."
Dr. Penny Rosenblum: Yes, a lot has changed since April 2020. So just as a reminder, I think I said it at the beginning. So the Flatten Inaccessibility study came out of a phone call between Troy Otillio, who is CEO of Aira and Dr. Kirk Adams, who is the CEO and President of AFB. And Aira had done just a very small survey, a couple hundred other users, back in the beginning of March because people were using Aira in a different way due to COVID-19. And so Troy asked Kirk, "Hey, can we do a little survey together?" And the little survey became Flatten. And though we had our 16 collaborating organizations, from a financial standpoint, AFB, my salary and Dr. Chen is more who works with me— her salary and John and his team's salary because they've been doing so much of the behind the scenes stuff and then the report that was put together and published cost, at some point somebody has to pay for it. And right now at AFB, we don't have the resources and the folks to do that. If we could get a donor to support that work, I think it might be something that AFB or another organization would consider in taking the lead role. AFB has made a commitment to do the Access And Engagement 2 study around education for children with visual impairments. And we are actively seeking funding for that. But at this point we don't have the funding to do either. So, we as an organization have opted to go with the Access and Engagement 2. But that doesn't mean these issues aren't important and we wouldn't support anybody else who was taking the lead on doing a second Flatten. It's needed.
John Mackin: Penny, a good question just rolled in. Now, I don't think that what's in the Flatten Inaccessibility Report will necessarily answer this, but it is a good question. It involves disclosing. "Can you be required to identify that you have a disability to be eligible for online voting or accessible voting?"
Dr. Penny Rosenblum: I don't know the answer to that. So, I'm gonna directly say I would contact your local voting folks. And then possibly that report that we're gonna share. I don't have the answer to that. Great question, though. Thank you.
John Mackin: Looks like we have a comment. "If you want to find out how to advocate for accessible voting going forward, check out the National Coalition for Accessible Voting."
Dr. Penny Rosenblum: Thank you very much.
John Mackin: We have about — comments and questions are still trickling in. And it looks like we have about 10 more minutes. So, if folks keep having questions, keep them coming. We'll do our best to keep answering. One person says, "It depends on the state on whether or not you have to disclose a disability to vote via absentee ballot."
Dr. Penny Rosenblum: Thank you. Yes and that really in talking with Sarah Malaier who is one of our public policy folks here at AFB really said, it starts at the state level and then it goes out to the local municipalities. So, it's really important that you check on the local level.
John Mackin: Well, one thing I can do, Penny is our public policy team does a lot of work alongside our research folks like you. And sometime ago, a couple of months, they did— we did send a letter as an organization to the National Governor's Association. And I can share a little bit of that if there's a lull in the questions.
Dr. Penny Rosenblum: That would be great, John.
John Mackin: Okay. This is from our letter to the National Governor's Association. I will tell you when in a sec when this was whenever a colleague texts me that. But this is around transportation policies. And this is to the governors of every state. "Treat transit as an essential service. Don't cut it to the point of it being useless. Protect transportation programs that serve people with disabilities, older people, and low-income communities. Clearly communicate changes in policy. Implement accommodations as part of face covering policies and ensure incentives. For example, free masks are in place to encourage the use of face coverings. Ensure that such new policies comply with the Americans with Disabilities Act."
Dr. Penny Rosenblum: Those are really all excellent points. And again, I think they're common sense points that we can use this disaster, so to speak, of COVID to build on these things that we know that we need and we continue to need and will unfortunately continue to need after COVID-19. So, here's a historical marker that really can let us leverage with the data that we've collected on why those points that we made in that letter are so important.
John Mackin: By the way, that was from late June, that letter.
Dr. Penny Rosenblum: Great. Thank you.
John Mackin: Hat tip to colleagues.
Dr. Penny Rosenblum: You know John, while you're looking for a couple more questions for us to end up with, there was a quote that really kind of stuck with me. It's actually probably my, one of my favorite quotes. And it's, "We keep thing saying that we can outwit this thing and things will go back to normal. Let's overwrite normal and use this opportunity to make it better for all of us. Lemons to lemonades." And we actually used that quote at the beginning of the Flatten Report. And for me, as a person who happens to have low vision, who has had my life impacted by COVID-19, I mentioned waiting outside of the doctor's office when it was 100+ degrees outside because they were expecting everyone to wait in their car and I'm standing there with a bicycle in the sun. From being limited to already where I ride my bike and used to using the bus when I want to go further. Now not being comfortable going in a bus and not being comfortable going in an Uber.
So unless I can ride my bus— sorry, my bike, or walk there or my husband happens to be home and happens to be available, my world has really shrunk as a visually impaired person. And for my own self, I happen to be lucky. I happen to have a husband who is sighted and happens to drive. But for some of my friends who live alone who either are visually impaired or have — I have a couple of friends with chronic health conditions. That having to now rely on delivery services like Instacart or Amazon Prime when those slots - especially in the beginning - weren't available was really challenging. And it continues for many to be a challenge. So, we really can use this opportunity to look for solutions.
John Mackin: Thank you for that Penny. And good news: while we were chatting, some more questions came in.
Dr. Penny Rosenblum: Okay. We like the questions.
John Mackin: We like the questions. "What does this report show us how to prepare for pandemics or other disasters in the future?"
Dr. Penny Rosenblum: Thank you. That is an absolutely phenomenal question. I think that it shows us that every community needs a disaster plan. That when they're developing that disaster plan, they need to think about all different groups, whether that's the elderly, whether those are people who are below the poverty level and have limited financial resources, whether those are people with disabilities. That there cannot be assumptions that everybody is— has a car, has the money to put gas in that car, and can sit around driving that car. I think it also helps us recognize that we each as an American have a responsibility to know what resources are available to us, to seek out resources, and when those resources don't exist in our communities, to let our government know. To make our voice be heard that I need a resource.
We had some participants in rural communities who Instacart wouldn't deliver to them, they were too far out. You know, the one van that went through the county three or four times a day had been cut. And so, one of our participants said, "When I run out of what's in my pantry, I don't know what I'm going to eat." And that just is not right for anybody. So, we have to have a plan, but we also need to work to develop long-term plans. I mean, look at our fires in the West this year and how many people have been displaced. So, and we need to get to know our neighbors. I really think that's another thing that has come out of this for me was many of our participants were very isolated and didn't have a network or family or friends to check on them. And that added to their depression and their anxiety and their concern.
The participants who talked about having friends or family or a church family that was checking in on them didn't seem— we did not assess depression, the study did not have any type of depression scale. But from the comments, our research team believes that when people have a network of others that they seemed less anxious and less depressed in the types of things said in the comments. That is not statistically proven; that's just an observation of the team.
John Mackin: I know we're getting close to wraping up, so I'll figure out one or two final. We'll call this the penultimate if we can move quickly enough. "Does AFB have any tips to share about best practices for social distancing for the blind and visually impaired community?"
Dr. Penny Rosenblum: I would say none other than any other organization would. I think one thing we could all advocate for is tactile markings on floors and stores and other public places. If you can't see the stickers on the stores, the Xs on the floors, how do you know how to social distance? I am a really firm believer in Aira and Be My Eyes and other visual assistants. So if you are going someplace, and you're unsure about social distancing, get one of those folks to give you a hand and let you know if you're six feet away.
John Mackin: We just have a minute left, so I'm going to do my best to end this one on a positive note. So the onus is on you here, Penny. "Have you heard of any positive outcomes from the visually impaired community during COVID?"
Dr. Penny Rosenblum: You know, I've had the opportunity to be on several podcasts at this point. Most recently Tuesday Topics with Paul Edwards through ACB. And in talking to colleagues across the vision field, the way people have come together to support each other I think is really important. About, I want to say about 800 of our participants - don't swear me to that number - talked about that they went to a consumer organization for support and information. And so, I really encourage you, if you're not involved with ACB, NFB, BVA, all those acronyms, NOAH. If you're not sure what those acronyms are, Liz let's make sure we give a list to those links to some of the consumer organizations in our follow-up. Reach out and get connected because other visually impaired people may have some ideas and some insights that your sighted support network doesn't have. So, community is so important and we did see that in the data. Thanks, John.
John Mackin: Thank you. This will probably end it as far as timing. Just some very final housekeeping. If folks did ask questions that we didn't get to, you're welcome to send them to us at communications@afb.org. We will still do our best to answer them. I want to thank Monique and Yesenia for their interpreting work today. And I thank everybody for attending today. Mark your calendars; the next town hall, we'll be discussing employment and technology. That will take place Thursday, October 29th, same time, 2-3 p.m. eastern. The information will be available on our website, AFB.org. And we will have that information there and we will send more emails and be sharing on social media. So, thank you.
Dr. Penny Rosenblum: Thank you everybody. And please feel free to email me if I can be of any support to you or questions and it's prosenblum@afb.org. Thank you. END
