This week on the ACB Advocacy Update, ACB Advocacy and Outreach Specialist Claire Stanley speaks with Stacy Cervanka from the American Foundation for the Blind (AFB). ACB and AFB are working together to encourage Congress to include language in the 2020 Surface Transportation bill that would positively affect the transportation rights and access for blind and visually impaired Americans.
Intro: You are listening to the ACB Advocacy Update.
Claire Stanley: Hey everybody, this is Claire Stanley at the American Council of the Blind with another episode of ACB Advocacy Update. We here at ACB are here again to talk about another issue in the advocacy world as we do every week. I am again the Advocacy and Outreach Specialist and as always, if you have any issues concerning advocacy and blindness, feel free to call us at our 1-800 number or email us at email@example.com. That's firstname.lastname@example.org. So I'm just going to jump in this week because we are fortunate to have a guest with one of our colleagues from the American Foundation for the Blind that ACB is very fortunate to get to work closely with. And our guest today is actually a friend of mine. So why don't we jump in and Stacy, why don't you just introduce yourself to our listeners?
Stacy Cervenka: Well, thank you for having me, Claire. My name is Stacy Cervenka and I am the Director of Public Policy for the American Foundation for the Blind. And as you may know AFB is the oldest national advocacy organization for people who are blind and low vision in the United States. We were formed in 1921 so we're about to celebrate our 100th birthday next year. And we focus primarily on education, employment, aging with vision loss, transportation and technology. And unlike ACB, we are not a membership organization so we don't, you don't belong to AFB. We do primarily research and policy.
Claire Stanley: I love that you said you guys are the oldest organization in the US, I always forget that until you say it, but I think that's amazing and so great to hear about the work.
Stacy Cervenka: I just always have to assert our dominance.
Claire Stanley: Yeah [Laughter]. So I think what you are saying is great to kind of introduce what we've been doing with AFB. So like you said, AFB is not a membership organization, but you guys are a huge asset and a huge, huge pillar in the advocacy world for those of us who are blind or visually impaired. And so you guys approached us in 2019. When this airs it will be 2019 anymore! But you guys approached us in 2019 and wanted to work in a companionship role with other blindness organizations to do some advocacy work. So you wanted to talk a little bit about what that looked like and what you guys were thinking?
Stacy Cervenka: Sure, as you know that the American Foundation for the Blind, we've been kind of doing some strategic re-imagining and one of the areas that we wanted to focus on most was aging with vision loss. And when we really mapped out the aging space and kind of decided which direction we want to go in first we decided that transportation would probably make the most impact because when vision loss is actually one of the primary reasons that seniors enter nursing homes now we know that seniors would disproportionately rather stay in their homes and communities. In fact, 86% of seniors are more afraid of entering a nursing home than they are of death. So we know that they don't want to lose their autonomy. They don't want to lose their ability to make decisions about their own daily schedule. And yet, vision loss remains a primary reason that they enter into nursing homes.
And these aren't people who need constant around the clock, you know, skilled nursing care. These are folks just like you and me, Claire. And so we, when we kind of did some research into why folks with vision loss are entering nursing homes, it's often, well, I can't get around the way I used to or, you know, my mom can't get around the way, you know, she can't get around the town and she can't go to get her groceries. So lack of the ability to get to the grocery store is making people need to give up their entire independence and autonomy and move into medical facilities simply because they can't, you know, get to the store. And to us that seems, you know, ludicrous and you know, inhumane really. And so we decided to really focus on transportation. And we are, we're really hoping to engage other, you know, national organizations in the blindness space, particularly the American Council of the Blind and the National Federation of the Blind.
And we're hoping that the three major national blindness organizations can really work together and coordinate our efforts in whatever spaces we can, so that we don't duplicate each other's work. You know, we have so few resources in the blindness space that we want to you know, make sure that we're not duplicating efforts and resources. And then also hopefully finding some things that we can coordinate our work and work together and kind of pull together in the same direction on certain issues. And so far we are hoping to do this in the area of transportation. So earlier this month we reached out to the American Council of the Blind and asked if they would be interested in doing what we termed a legislative blitz with us on Capitol Hill and meet with as many congressional offices in a short period of time as possible. And we targeted members of the, well, Claire reached out to the members of the house of representatives on transportation infrastructure. And then I reached out to the folks in the Senate on the Senate committee on commerce, science and transportation, particularly their sub-committee on transportation and safety. So I think we had like maybe about 25 meetings.
Claire Stanley: Yeah, somewhere in the mid-twenties. Yeah, it's been great. And I just want to say, just to kind of highlight what you just talked about, Stacy, that it's so exciting that you guys want to work with other blindness organizations because like you said, we don't want to duplicate things and things like that, but I think also just two voices are louder than one and so on and so on and so on. So it's been great to work with AFB and hopefully you know, other groups in the future to just make our voice a little bit louder. So that's exciting. So yeah, we can, I'm going to kind of want to shift towards some of the topics we've been talking about, but before we do that, Stacy, let's just paint a picture of what our experience has been like so far. Like you said, we've met with about 20 odd offices so far, both in the House and the Senate. We have I want to say something like five meetings set up already for the beginning of 2020 and I'm sure that will grow. So how have you enjoyed it so far? I know we've met with a lot of great staff legislative directors and legislative assistants, some really great people out there. For the most part we've had really positive experiences. People at least listen to what we have to say. But what's your been experience? Have you enjoyed it so far?
Stacy Cervenka: I really have. I've enjoyed getting to learn more about ACB's legislative priorities and I, I hope you guys have enjoyed getting to learn a little bit more about ours and you know, as any time you meet or you schedule a large number of meetings, particularly in Congress, some are going to go better than others. You know, if some of the meetings, you know, they kind of hear us out, they write things down, they smile, they send us on our way you know, they say something nice. And then sometimes, you know, they get much more deeply engaged and they often, you know, recommend that we speak with other offices on the Hill or other agencies off the Hill to try to get their support. They tend to direct us toward you know, committee staff and other folks that we should be meeting with. And this really helps us in targeting our efforts and helps us to know which direction we need to go in next. And it's a huge, long process. It's not simply us going in and saying, okay, here's what you should do, us making a really good argument and them saying, my gosh, you're right, let's do it!
It's not quite as simple as like selling, you know, a product. It's you know, it's kind of a complicated system. And so the way it often works is we have to convince the members of the appropriate committees that they want to get language that we're talking about into, you know, possibly the Surface Transportation Bill. And then we have to talk about, you know, what would this cost, if it would cost something, how would we offset that cost? What would we get rid of now? What regulations would we get rid of now? And that can be really challenging. And then we also have to compete with the priorities of hundreds of other organizations. I mean, there are so many transportation priorities when you think about like building bridges, building roads. I mean there's just, there's so many. And so trying to get our little issues, well, they're not little issues, but...
Claire Stanley: In the grand scheme of things, there's so many. Yeah.
Stacy Cervenka: Yes exactly. To get those heard and cared about enough that they make it into the Surface Transportation Bill. And if not we hope to get offices to offer them as an amendment.
Claire Stanley: Exactly. Yeah. And I liked that you said, you know, it's not just something, we're not selling encyclopedias, it's not one and done. One thing that we really see at the ACB national office is building relationships. So we go in, we meet with them, we talk to them, but then we follow up and we might follow up again. And you know, we really tried to build relationships that we can use not just on this issue but on other issues moving forward. So it's an ever, ever growing and evolving process, but it's, it's really fun for us at least here at ACB.
Stacy Cervenka: Oh, absolutely. And like you said, you know, there are some offices that might not bite on this issue. They might not decide that they really want to latch onto it and kind of be a champion for it. But now they know who we are.
Claire Stanley: Exactly.
Stacy Cervenka: They're aware of, particularly the challenges that blind and low vision folks face in transportation. And so that when we come around next time with possibly a different proposal or maybe it's the same proposal but a different vehicle, a different piece of legislation you know, they know who we are, they feel comfortable with us, they know we're legit. They're somewhat well versed in the area already.
Claire Stanley: So you started talking about the Surface Transportation Bill. And that's what we're hoping to get the two different issues plugged into. So we can give a quick little background on that and then let's jump into the topics. So the Surface Transportation Bill has to be re-upped by the fall of 2020. So just in this next year and the different issues that Stacy and myself will both talk about are things we're hoping to get included. If that doesn't work right away. We have other ideas, but that's kind of what we want. The driving force, bad pun, I know. Some people call it the fast act too, so we usually we'll say Surface Transportation Bill, but it's been called the fast act in the past as well. So you might hear a different jargon thrown around, but that's just kind of some context for our listeners. So Stacy, do you want to jump in and talk about the issue that AFB has been working on?
Stacy Cervenka: Well, as I said previously you know, AFB is really concerned about the transportation options that are available and mostly not available to older people with vision loss. And you know, when you build systems that are more conducive to older people with vision loss remaining or remaining independent in their homes and communities, you also make it easier for working age blind and low vision to work because a lot of those services that enable people to be independent in their homes or the same services we, you know, Claire and I need. And so one thing we're, we're also seeing a lot with working age blind and low vision folks is that transportation significantly affects their ability to get and keep a job. You know, the ability to you know, attend a job interview, the ability to attend, let's say a job fair, the ability to accept a job once they, you know, once it's been offered to them.
And then many folks accept jobs and then realize that it's not cost effective to keep that job because the transportation to and from the job is so expensive that it would actually be better for them financially to remain on SSI or SSDI. I am aware of quite a few blind people who have had jobs and you know, perhaps they pay minimum wage, perhaps they pay, you know, eight or nine or $10 an hour and it costs them, you know, $15 each way to get to work. And that's, you know, that can be $30 a day. That could be three hours of your shift of an eight hour shift. And then when you take away taxes and you take away you know, insurance, a lot of folks work eight hour shifts and they make 20 or 30 bucks for their work.
And so, you know, they have rent, they have families. I mean, they can't afford to do that. So then often they have to leave their jobs and go back on to public assistance. And it's completely understandable because it's simply a numbers issue. You know, up until recently I actually served as the chairperson of the National Federation of the Blind blind parents group. And one thing, you know, parents were constantly approaching me saying, I want to work so much. I live in poverty. I don't want to live in poverty. I am tired of this. My life is so hard. I want more money, I want a better quality of life, but I have no way of getting my children to daycare or to school and then going on to work. Then continuing on to work because where I live doesn't have great bus service and paratransit does not allow me to make a stop to drop my kids off and then go on to work.
And you know, I look at my family, my daughter cannot be dropped off at preschool earlier than 7:30. The doors don't open until 7:30, so that's the earliest we can drop her off. Then my husband has to be to work at 8, so it would be impossible for him to drop her off at 7:30. Sign her in, walk to the bus stop, take a bus, transfer buses, walk, you know, walk two and a half hours. It's just, it's not, it's not a matter of having a good attitude or having good cane or guide dog skills. It's just not possible. Our paratransit company does not allow you to schedule rides less than 90 minutes apart. So he can't drop off Josephine and then schedule, you know, on paratransit and then schedule an additional paratransit ride because he'd be stuck at her preschool for 90 minutes.
And A - that would be rather creepy to have some dad just hanging out on the playground, like playing on the monkey bars. But I know he, he'd enjoy that, but, but, but also really, he can't do that because he has to be at work. And now Greg and I are extremely fortunate because we both have jobs and we can afford to take Uber and Lyft every day, but it is a huge expense to our family and it really cuts in to our monthly income. In fact, it costs Greg $13 to drop Josephine off at preschool and then go to work. That's $26 a day. That's $13 one way, $26 a day, over $125 a week and over $500 a month. And that's not our entire transportation budget. That's just getting Josie to school and Greg to work. That's, that's not anything else other than getting Greg to work. That is the cost essentially of him working. But again, we are reminded all the time that we are fortunate because there are many people who could, this just simply wouldn't work for their budget, but they could never, daily Uber and Lyft would not even be an option.
Claire Stanley: Well, I know it's really struck me as I've heard you talk about this a lot, that we constantly hear the statistics out there that 70% of persons who are blind are unemployed or underemployed, 70% and so this is a great telltale sign that it's not just that people can't work, if you can't get to work how are you going to work? Like you said, if it's going to, you're only going to be bringing home, you know, $20, $30 $40 out of your daily paycheck because you know, you can't take paratransit and Uber and Lyft are ridiculous then. Then yea, how are you ever going to be able to get a job or sustain a job?
Stacy Cervenka: Well, and I think there are some folks too who will say, well then why don't you live in an area where there's great public transportation. And I think when you live in a large city, that's easier to do. Where when you let, you know, I live in Lincoln, Nebraska and it doesn't take too much. I mean Washington DC has, has really excellent transportation. But in just about every other city in the country the public transportation isn't really that robust and it's not really conducive to living a full and active life. And even in a lot of cities are larger. It's like, okay, if you are going to be reliant on public transportation, you can only live in a few areas. And I don't want blind people to be constrained to, okay, we all have to live South of town or you know.
Claire Stanley: That's, it's the give and take too because you know, I lived in Washington DC for a long time and I love it. But you also pay a really high rent as a result. So then there's that give and take of, oh so you can have a job and get there, but you're paying a whole lot of money to live there. So you know, so it's, it's a, it's a constant battle for sure.
Stacy Cervenka: Well, and then the blind folks who live in the suburbs in the DC area, I mean the housing cost is lower, but then they end up spending just obscene amounts of money to get to work everyday and it ends up costing the same, if not much more than actually living in the district or living in the city. So it's, I mean, as I'm sure your listeners know, I'm sure that everyone is pretty much nodding in agreement
Claire Stanley: Exactly.
Stacy Cervenka: One of the largest logistical barriers of, of blindness. But so what we really wanted to do is we would really like to overhaul the paratransit regulations that are put out by DOT. And we would like, we see paratransit as an underutilized resource and a real missed opportunity because right now, paratransit systems in most cities are, I mean, they're just not robust and good enough to support people living independent integrated lives, they have a lot of outdated policies. Paratransit was kind of conceived at a time when folks with disabilities maybe needed to go out once a week. Okay. You know, to a medical appointment and some sort of thing. It wasn't meant for okay, we're going to use this to get to jobs, we're going to use this to drop our children off at school to go to community events. And so we would really like to see paratransit be the type of resource that people can use to, to supplement other resources such as alternative transportation, but that can be a real tool like that can be a, you know, a genuine resource that people can use.
And right now the DOT regulations they, they don't require paratransit agencies to make stops, to allow riders to make a stop on the way to a final destination. So we would like to see those rules amended. So that every paratransit agency allows riders to make at least one stop of up to 10 minutes in duration when that stop falls into certain categories such as education, childcare, elder care, pharmaceutical pickup, so that parents who are blind can drop their children off at school, can drop their children off at childcare and continue on to work so that older people or any of us really can stop at the pharmacy, run in, pick up our prescription and not be stuck standing at Walgreen's for 90 minutes and then can head onto another errand. You know, people who drive cars, I mean, they often run three or four errands kind of bing bang, boom.
Claire Stanley: Exactly. Yeah.
Stacy Cervenka: Like one right after the other where we cannot do that. And so I think this would, would help allow us to be more efficient and it would allow a lot of people to be able to work. We would also like to see some reciprocity among paratransit agencies so that if you move to a new location, your audit, you can submit proof that you were paratransit eligible where you used to live and you will automatically be made eligible in your new accounts. As an example for me, I, you know, was eligible for paratransit services in Chicago and Minneapolis and Sacramento in DC and I rarely used it because those cities had great transportation. But I did know that I had it in my back pocket if I needed it. And then I moved to Lincoln, Nebraska and I got denied.
And the reason was they told me that I could walk up and down the stairs onto a bus and they had me like walk up the stairs and walk down the stairs. And because I was able to do this, they were like, you know, you don't qualify and what they weren't, what they weren't taking into consideration is that the department of transportation regulations stipulate that you can also be eligible for paratransit if you have difficulty getting to the bus stop. If you have difficulty getting from the bus stop to your final destination, if weather impacts your ability to travel independently. For example, if there's snow and ice. In my situation I was carrying my one year old daughter in a front carrier. It's absolutely dangerous to do that when there's sidewalks with ice. Lincoln is not great at plowing, you know, crosswalks. And so often I would have to climb up snowdrifts and down the other side with my daughter attached to me or sit down on the snow drifts. And I mean, it was absolutely dangerous, like, and it made me really feel confined to my house. And so I appealed this, but what I learned was that there are a lot of blind folks who get denied paratransit because paratransit agencies don't, the folks who are doing the eligibility determination, don't know what the regulations actually are.
Claire Stanley: We often hear that they're not, you know, O&M instructors or things like that. They're just, you know, probably low paid individuals who are just kind of given a check sheet and said, you know, go at it. And so unfortunately they don't have that be necessary.
Stacy Cervenka: Exactly. I mean, they're entry level. I mean, eligibility determination is often just an entry level job. And you know, I have a, I have a coworker who her test, her eligibility test was, they set up some orange pylon cones and they have her navigate them with her cane. And because she was able to do that and not fall over the cones and kill herself, they were like, well, you don't need paratransit. And she was like, I'm not, I'm not concerned that I'm going to run into a cone, I'm concerned that, you know, I may get, get off the bus and not know how to get to my final destination or when I get out of a final destination, I might have difficulty locating the bus stop in an unfamiliar area, or it might be a windy day and it might be unsafe for me to cross the street because I can't hear traffic. So, I mean, there are so many reasons that a person might need paratransit that go far beyond the ability to get on and off a bus. So we, we just think that if you're eligible for paratransit in one place, you should be able to submit proof of eligibility when you move and that should automatically guarantee you eligibility.
Claire Stanley: I love that you are working on that because I'm originally from California and I qualified for paratransit in Southern California where I grew up. And then in college when I moved to Northern California, I applied and I remember just the stress of having to be reapproved and I thought this is ridiculous, I'm in the same state. And even then just having to be reapproved it's, it's a really you know, stressful process and it shouldn't be. I love that you guys are working on all these issues cause I think all of our listeners who are blind are nodding their head because we've all used paratransit. And like you said, it's such a great tool to have in your back pocket and it could just really, really help. But I know a lot of us are probably kind of giggling to ourselves because we know we tend to avoid paratransit for all of these reasons. So it's, you know, it's so frustrating that it's a great tool, but at the same time we're like, Oh, but there are all these problems. So the fact that you guys, AFB, is looking to remedy some of these issues is great.
Stacy Cervenka: Well, and I think it's one of those things where paratransit is just not a sexy topic like in the transportation community or even in the blind community. It's like eesh, paratransit, it's like the you know, mercy mobile. I mean, it's, not effective. You know, in Lincoln, Nebraska, they call it the handy van.
Claire Stanley: Oh geez.
Stacy Cervenka: It's so awful. But the point is like, it's so, the policies are so archaic and so undignified, the policies of writing it are often so paternalistic and infantilizing and undignified that we just avoid it all together. Where it's like, you know what? We have this system. How can we improve it? I mean, the system exists. How do we build it up?
Claire Stanley: Great. Well, I know we could talk about this topic all day because as we know, transportation is probably the biggest issue the blind community faces. But that's the first topic that AFB's brought to the table to talk about. As we've gone to the Hill, which has been really great. But for time purposes, we'll jump really to our second topic. And I know, again, we're going to have lots of comments on these topics because they're huge. So feel free to email us email@example.com if you have any questions or comments or suggestions on this topic because again, as we can see from our excitement, it's a big issue. But to coincide with this issue that AFB has been working on and advocating to get into the transportation, Surface Transportation Bill, we also want to talk about audible or accessible pedestrian signals and how they're paired up with leading pedestrian interval signalization.
Claire Stanley: I know mouthful, when I first learned it, I could barely say it. I'm sure a lot of our listeners are familiar with what they are, but I'll give a brief overview just in case. So we all know what audible pedestrian signals are. We all love them. They used to chirp like a bird. Now, thankfully most of them talk instead. But LPI signalization is when Stacy described it, cause Stacy has more vision than me as the little hand or the little man on the other side of the intersection that alerts pedestrians that they can cross. But the way leading pedestrian intervals signalization works now, pedestrians get to cross the street before the cars get to go. So pedestrians get a few extra seconds to cross the street. And that's really, it's great for pedestrians, but it's frustrating if we don't have audible pedestrian signals for the blind because as we all know, those of us who got our orientation and mobility training, we read the traffic.
So we're standing there listening to our parallel street to surge before we cross. Well, if there is LPI technology going on, our sighted peers are already going to start walking. And I think I've experienced this sometimes, they start crossing the street and I'm listening and my parallel traffic isn't moving and I'm thinking, what are they doing? Are they just brave and are crossing the street? But what they're probably doing, not always, but what they're probably doing is seeing the little hand that changed or the little man that changed because they get those extra seconds. And so what we're advocating for through ACB when we go to the Hill is that we need to have audible pedestrian signals installed to coincide with LPI technology so that we get those extra seconds because we need those extra seconds. Some studies done by professional O&M instructors have shown that up to 30% of persons who are blind or visually impaired along with those who are older, and often they coincide, are not making it all the way across the intersection.
And we all know intersections are getting busier, we have slip roads, we have hybrid or electric cars that we can't hear. Things are just getting more complicated. So I'm speaking on behalf of myself, but I'm sure the whole blind community, having those extra additional seconds to get into the crosswalk, to be seen by cars, to be making progress across the intersection would be huge. So ACB is advocating to, our pie in the sky wish would be to get an addition under the Surface Transportation Bill to include that, but if not, we're also talking to the Congress members about reaching out to the federal highway administration to amend a manual that has the regulations, or they're not regulations I should say - they're guidelines, to amend the guidelines that dictate what this should look like. So ACB's advocating along with AFB on the other issue, we're kind of bringing these transportation issues to the table. So yeah, that's, that's a little bit of what Stacy and myself as well as Clark Rachfal and Sarah Malaier from AFB have been doing. We've been pounding the pavement on the Hill throughout December. We'll be out there in January as well and who knows maybe onward, even more. So keep tuned to what we'll be doing as it relates to transportation. Before we end, I know we've been talking for a while, losing time quickly. Do you have anything you just want to end with on behalf of AFB Stacy?
Stacy Cervenka: No, I just really thank you for allowing me to be a part of this podcast and to speak with your members. And you know, I just want to express my hope that you know, folks from across the blindness community can kind of really put our heads together and you know, find different ways to improve transportation for folks who are blind and low vision because as you said, Claire, it really is in many ways the most difficult logistical aspect of blindness and the largest barrier that folks face to employment and to independent living. And so I just hope that we can all you know, find the areas that we agree and push hard in those directions.
Claire Stanley: Yeah. Well put. Great, great way to end. So we will have information on both of these topics for all of our members to come to the leadership conference in February. We will have our Hill visit on February 25th. We hope everybody will be able to come this year because there'll be some of the topics, a little handout literature on so you can bring them to your Congress members when you do your Hill visit. Because again, they're such important topics. And that's just a teaser, topics for our imperatives for the leadership conference are coming soon. So stay tuned. And Stacy, just thank you so much for being on another episode of ACB Advocacy Update with us today.
Stacy Cervenka: Thank you so much.
Claire Stanley: Yeah. And Stacy, we always like to end by saying, keep advocating!