Beyond Hearing Aids: Why Assistive Listening Matters

Welcome to This Week in Hearing. I’m Shari Eberts. If you live with hearing loss, as I do, you know that hearing aids are only part of the solution. Mine help me tremendously in quiet one-on-one conversation, but in a theater, an airport, a courtroom, or even a place of worship, distance, reverberation, and background noise can overwhelm even the best hearing aid technology. And that’s why assistive listening matters. Hearing loops, FM systems, infrared, and now Auracast, these are all technologies that deliver sound directly to your ears cleanly and clearly. Today, I’m joined by two people working to make that kind of access the norm rather than the exception. And they’re both with the Center for Hearing Access, a national nonprofit founded in 2024 that grew out of the Shed Institute, a performing arts center in Eugene, Oregon. And it’s a venue that had installed multiple hearing loops and then discovered how few people knew how to use them or even knew that the ADA gives them the right to ask. So our guests, first, Dr. Juliette Sterkens. She’s an audiologist with more than 45 years of experience in in Hearing Rehabilitation and Assistive Listening. And many of you may know her as an advocate for HLAA’s Get in the Hearing Loop. And she’s given hundreds of presentations across the country. She’s received the American Academy of Audiology’s President Award for her advocacy. And her TEDx Talk, “What You Don’t Know About Hearing Aids,” has reached more than 1 million viewers, which is really fabulous. Yeah. And our other— our second guest is Wynne Whyman, and she is the Center’s Director of Communication and Advocacy. She has lived with a progressive hearing loss since childhood, and her advocacy, including helping adding hearing loop accessibility information to Google Maps, earned her HLAA’s National Community Access Award. She has two master’s degrees and experience with executive leadership development, education, and nonprofits. So two fabulous guests, welcome to This Week in Hearing. Thanks for having us. Thank you for the invitation. My pleasure. So Wynne, let’s start with you because you bring both professional communication expertise as well as your own lived experience with hearing loss. So tell us about the Center for Hearing Access. What’s its mission? What does it do? And how do you see it fitting in with other national initiatives and hearing loss groups? The Center for Hearing Access is a nationally serving nonprofit. We first focus on the consumers, educating them about hearing accessibility, and once they have that under their belt, they can translate that into advocacy action. And the second thing is that we work systemically in multiple sectors. It might be senior residences, performing arts, airports, courts, healthcare, and many others, with the goal to improve awareness and increase results for hearing access. Our organization has attracted a number of strong advocates with hearing loss. They’re highly motivated, and they’re already embarking on advocacy projects and looking well into the future with mentors and support within the community. Since there’s numerous needs with 72 million people with hearing loss, the Center for Hearing Access, along with consumer groups, audiologists, hearing instrument specialists, medical providers, and of course state agencies, has a part to make positive changes. Advocacy is a team sport. Well, that’s definitely true. It takes all of us to really get those advocacy initiatives going. So thank you for that explanation. So Juliette, you’re actively working through the center now. So how are you building and expanding on what you’ve spent your last several decades of advocacy and teaching talking about? How are you building on that? Yeah, it’s been 14 years that I’ve been giving lectures, writing articles, you know, reviewing materials. And the Center for Hearing Access, we call it CHAA for short, is a good fit for me. You know, I’ve always been about educating people, and I’m really using all my contacts that I’ve built up in the last 14 years. And on CHAA, there are those practical handouts. Some of them, I mean, we co-write them, but many of them came from my past. Experience. And these handouts are for consumers, they are for the venues, and they are for the providers. So I really believe in providing people with hands-on materials, you know, in paper, on paper, and whether they want to file a complaint, whether they want to take action in their community, or if they simply just want to understand what’s up with their hearing aids, you know, how to use their hearing aids. And frankly, there is an overabundance of handouts on that website. Okay, well, that’s good. More, I guess more is more maybe in this case, right? Definitely. Yeah. So when Juliette was just mentioning sort of all this treasure trove of things on the website, so can you talk a little bit through those resources more specifically and what sort of templates are there, guides for your ADA rights, lists of venues, all those wonderful things that you guys have there. So CHA has 3 main audiences, and just underlining what Juliette said, it’s for consumers, it’s for hearing healthcare providers, and for facility staff. So it’s a place for anybody to explore based on their needs. It’s designed that people can just pick and choose rather than linear, you have to see everything. Just hop on in, get what you need, and go. So it’s a one-stop shopping, pulling all sorts of resources together, the best resources that we can find so that people can learn, and then action-oriented templates for the providers and the facility staff. Because we— there’s just so much repetition. You don’t need to reinvent the wheel. What works in one part of the country is going to need to be adapted, and then working will work fine in another part of the country. So some examples of some of the handouts that people can use is understanding the differences between an assistive listening device and an assistive listening system, or understanding why telecoils are essential for ADA compliance, or maybe they want to learn about the many ways that they can connect to Auracast broadcast assistive listening. Maybe they’re a beginner and they don’t know what questions to ask facility staff when they’re asking for the devices. Or if things don’t work, a template for submitting a complaint, either to healthcare or some other formal complaint that they need improved communication access. So there’s a lot to choose from, and it’s hopefully there that you can search for it. Or you can go into the particular audience and find what you’re looking for. Excellent. So Juliette, I know you’ve often said that audiologists and hearing care professionals sometimes are maybe a missing link here, or that too many people leave the clinic without even hearing the word telecoil or even assistive listening device in general. So what specifically does the center offer these clinicians and— What are your thoughts in terms of what needs to really be included in the fitting process about these assistive listening options? Yeah, you know, we’ve already mentioned telecoils. We’ve already mentioned Auracast. I mean, in effect, they are both ways to connect to sound. But the biggest thing that, in my opinion, needs to change is that patients need to be set up for success. And that means including both telecoils in hearing aids and Auracast, at least for for the next generation of hearing aids, so maybe 5, 6, 7 years, patients need to be educated about the limitations of their hearing aids, which then automatically leads into that discussion on assistive technology. And when a patient is told about limitations of hearing aids, the audiologist can immediately reassure that we’ve got that covered. I’ve got you covered. We’ve included some features in these hearing aids, you know, that I’m not immediately going to overwhelm you with because there is a lot to learn when you’re first learning about hearing aids. But a handout, you know, at the time of the order of the hearing aid, why you’re including some of these features can go a long way. And those handouts obviously exist. And if they have both, they can benefit from the existing infrastructure, you know, the FM systems, the infrared systems, and hearing loops. And they are all set up, they’re poised to start benefiting from Auracast as well. And both are going to coexist for, you know, years to come. And you can’t talk about one without talking about the other. If your patient finds out Auracast works, but that in a theater 100 miles away, they use neck loops, they’re going to need a T-coil, right? So, and I can assure professionals that it’s an exciting time. It was super exciting for me to be able to offer a solution, you know, literally sending patients to places to go try it out and have them go back, come back to your office 2 weeks later going, I could hear every word. It was just, it was transforming for my practice. And I really believe Auracast is going to be doing that as well. But in the meantime, we need our patients to have it all in their hearing aids, right? So there’s lots of provider information. There’s also CEU training links on the website. We hate, I hate to sound like a broken record, But I mean, there’s so much that we really can’t talk about it in a very short interview, right? No, absolutely. Yeah. Yeah. And I love that. I love that we can all sort of share our advice with the industry and with practitioners in general because we’ve seen it and we’ve experienced it, right? These life-changing moments. So that can be very important. The other thing that I would add just personally is that in addition to the technology, there are so many other of things that people need to live well with hearing loss, right? They need to have, you know, a mindset where they’re willing to take risks, where they’re willing to accept it, where they’re willing to ask for help, as well as just different communication behaviors that are not technology related. But all of those things together. But of course, having an understanding of the limitations of the technology opens you up to all those other tools, right? And when you have all those other tools, then you can take charge and really communicate well. And that’s That’s the goal, right? That’s the goal that all of us have and all audiologists have as well. So it’s wonderful when we can all be on the same team like that. I love that. Yeah. Yeah. So, Wynne, let’s talk a little bit about a script for listeners because sometimes it’s hard, right? You go to that theater or courthouse, you ask for the assistive listening, maybe it doesn’t work, maybe nobody knows what you’re talking about. So can you just tell us, walk us through it? You know, who do you ask? What words do you use? Do you mention the ADA, or when do you mention that, and how do you follow up? So let’s get to like the brass tacks here. I’ll first talk about asking and some of those mindsets that you mentioned, because I think that’s absolutely critical with that. And then I’ll talk about when things don’t work out so well and some of the options to do. So first is that mindset. It’s just to accept yourself for where you are. So for people new to hearing loss, they don’t know the vocabulary, they haven’t used this stuff, they may have never seen anybody use it, and all they can do is say, “I want that hearing thingy.” They don’t— they can’t even call it anything but a thingy, and that’s okay. And then on the other end of the spectrum is that there are experienced users, So if I walk in, I’m going to know exactly what I want, and I’m going to have that vocabulary, and I can specifically ask for it. And both are fine. The ADA does not say you have to be an expert. The ADA simply says you have the right to understand as clearly as somebody with typical hearing. And so however you ask for it and however you get to it is what’s important. That you don’t want to say, “What do you have for me?” Because we have horror stories where people use that vague language and they get weird stuff that doesn’t work for them. So some people were offered front row seating and no assistive listening, and that’s not acceptable. So the more clear that you can be and the more persistent, the better. So here’s a non-technical, simple script for people: I have hearing loss and require assistive listening to participate. Please tell me what assistive listening you have and where am I going to pick up any additional equipment to access the system. Simple. Done. So hopefully that’s going to work the majority of the time. That sometimes staff turns over, sometimes weird things get asked. You know, we all have 100 stories with it. So for bumps in the road, my basic rule of thumb is I give staff one chance, and then I move up the food chain, and I start weaving in that ADA language. And people don’t have to know all of the ADA inside and out. We have a one-page handout. They can simply attach it to their email. They can confer to others. They can talk to the ADA Center, whatever they need, but just ask and, and give them some more specifics. And then if things don’t work out, the consumer has the choice. They can submit feedback or a complaint, and people shy away from the word complaint. But that’s just really formal feedback to me. That’s all it is. And they can submit that either of that feedback or that complaint internally directly to the facility so that they can work with it. There’s sometimes some education or externally on the state or the federal level. CHA has complaint templates to make it easier. And what’s important to remember is that mindset. That mindset is changes for the person themselves or for others are only made when people speak up. We need to be speaking up more and more, asking for it and saying something if it doesn’t work. Yeah, no, I totally agree with that. And some people don’t want to do that, right? They feel shy or what have you. But I like to think about it also as anytime you advocate for yourself, you’re actually advocating for other people, the whole community. So it’s not a selfish thing to do, right? If anything, it’s, you know, it’s a benefit to lots and lots of people. So I always try and think about it that way as well. And I love that you have these templates because it’s so easy to do this in advance, right? I think sometimes if we show up and we ask the question, it should work. But maybe if you do it, you know, a week in advance or even a couple weeks in advance, it gives that venue time to sort of figure out and refresh their own memory maybe of what it is that they offer so you can have a more successful time when you’re there. So you’re right, it’s up to us to do that legwork, to know what we’re asking for and to give that lead time just to, you know, help have the odds be stacked in our favor, right? Yeah. And that’s a delicate balance, isn’t it, about those odds? Because we want— when we go there, we want to hear— we pay for it. We’re looking forward to it. We want to do everything we can. And yet it’s a right. It should be. It’s part of the built environment. It should be there. We should be able just to walk in, but we know weird things happen. So that’s a balance to always be juggling. Absolutely. But there are also some good experiences to talk about, right? So Juliette, maybe you can share sort of a win-win situation where hearing access was just transformational. Yeah. And, you know, I have about 1,000 loops under my belt in Wisconsin, and it’s always been about helping people hear in places that are important or meaningful. So for clinicians, it means getting in the head of the patient and figuring out what’s important to them. Is it a book club members where people talk very quietly, or is it hearing at the weekly Rotary meetings? I mean, or is it hearing a sermon in a place of worship. And my initial successes were in those places of worship. And then when a parish priest calls you on a Monday morning to explain how much difference the hearing loop made for several parishioners over the first weekend, it’s amazing. You know, when a patient calls you in tears and says, “I was able to hear the minister lick his lips,” it lifts you up. As a professional, right? I mean, that’s why I became an audiologist. My other story is that I don’t know if you know, but I live in a continuing care retirement community. And back in 2010, I had a ton of patients living here. But the executive director made it clear that, oh, he didn’t really see a need for hearing loops. No one had ever complained. I mean, there you go, right? Well, Residents who experienced the hearing loops in local churches took it up with him, and there are now 3 loops. And recently, one of the amplifiers needed some routine repair. Well, you should have heard the uproar among the residents, right? So to me, that unhappiness that they noticed that the loop wasn’t working, that’s a success story. You know, and the fact— Exactly. And that they continue to be installed, that I get messages from installers saying, oh, we just did another auditorium at a high school in Manitowoc, Wisconsin. So that’s how those loops, you know, just kind of move forward. It’s not an incredible wave. It’s just word of mouth, happy users. Who then help spread the word. Absolutely. I love that. Yeah. And that leads into your next question, doesn’t it? So let’s talk about our cast, Juliette and Will. So it’s the big topic of the day, right? And I’m a big fan, actually. I’m very exciting— excited about it. And I think that excitement is real. But there is still some confusion out there, obviously. So Juliette, tell us what your thoughts are about— Auracast, how it fits into the future, and what has to happen to get us there? Yeah, yeah. My honest assessment, Sherry, is I vacillate between it could happen soon to maybe 2 or 5 years, or it’s going to take some more time yet. And sure, for many techie folks like yourself, you whip out your phone, you find the Auracast stream, you find the app, you choose the proper stream. Easy peasy, right? But for others, just last week I gave a lecture to about 55 Kiwanians. I don’t know if that’s a word, but a Kiwanis club in Appleton on the future of assistive listening and Auracast, right? And after the lecture, 4 hearing aid users came up to me. None of them knew the brand of their hearing aids. And when I said, “Can you just open the app on your phone?” None of them were able to open up the app on their smartphone. But yet two told me that every Sunday they sit in church and they push on the button of their hearing aid. So my big request to the industry, I think it needs to be part of this, we need easy button access. You know, and it was promised years ago that it’s going to be just as easy as accessing a hearing loop, push a button. Is that going to happen? We don’t know. And of course, you know, Bluetooth SIG, and now this is, I think, 2023 or 2024, they said a transition could take a decade. And personally, I think that is not an unrealistic timeframe. But I am looking ahead, and there’s a high school auditorium being built as we speak right here in Oshkosh, and it’s going to open in the fall of 2027. And I am right now laying the groundwork to make sure that Auracast gets installed. And that means educating the audiologists in the community, making sure that we have information on the websites and handouts, and that people are educated about this, but a lot of pieces have to fall into place. I wish it was just easy. It’s going to take time. We’re in this transition time. And I know some people have accused me of being somewhat negative. Now, I’m realistic. I know it took years to get hearing loops to just get going. And Auracast is going to be easier to install, no doubt about it. But then we’re also needing to deal with all the users who don’t know they have an app, they know they have an app, but they can’t find it on their phone. So it sounds like some more work to do there, but definitely an exciting option for the future. And I always think that the more options we have, you know, the better off we’ll be. One of the things I really find exciting about Auracast is that people without hearing loss also find it very helpful. And so I think if it’s being demanded not just as sort of an ADA listening assistance tool, but a better listening experience for everyone, maybe that helps accelerate the process. So I’ve got my fingers and my toes crossed. I’m pretty excited about it. But let’s talk— we’ve talked a lot about audio access, but I want to talk a little bit about visual access as well. So, Wynne, I don’t know if you could talk a little bit about where captioning fits into a truly accessible venue, because captioning is something I, I really like to use a lot as well. So you’ve described it well. It’s about full accessibility, and having both can be life-changing. Some people like one, sometimes they like the other, sometimes it’s both. So the way I think of it is assistive listening should always be provided. It’s required in a lot of places. That’s kind of the bread and butter. And then adding captions, and so that might look like performing arts has assistive listening, but they have one or two shows with open captions. Or there’s a school board meeting that has assistive listening and they have computer-generated captions. Or there’s a film festival that has assistive listening, and they also require a minimum of one showing to have open captions so that that full accessibility is there for everybody. Inclusion is there for everybody. And I do want to footnote and say captions are complex. That was a very simple explanation, and I don’t, you know, I don’t want to be going into a long conversation. So to encourage staff to look at their mission seeing who they are reaching, who they are not reaching, and then also consult the laws and the standards for their particular situation. And it’s in a lot of younger people, like captioning as well. They really look for that. So it— and that could also drive that provision. I agree. I mean, I think that they watch all their stuff with captions on, like I do, but they watch it for a different reason. But that’s wonderful. Again, if that demand is sort of coming more broadly, hopefully that increases the access for everybody. Yeah. And I’ve actually demonstrated how you can do that in a live lecture using two microphones connected to the computer, and it’s really slick. When you can make it work and people go, “Oh, we’ve never had this before,” and during a lecture. So I see another handout coming, Wynne, about captioning. It’s already here. It’s here. Yeah. Yeah. Yes. So as we sort of wind down here, I thought we would just close maybe with some action items. So maybe Juliette, you can give one for the professionals listening and either Wynne or Juliette, one for the consumers as we wrap up here. And you just think I can do this with one action item, Sherry? Well, no. Get real, right? I know, we’re gonna have to be concise. But I’m gonna make it very short, you know? And in fact, I just had an article published in the Hearing Review. There’s an upcoming article in the ADA magazine, and it’s already on the audiologist’s website. But the list is, you know, in a nutshell, Fit hearing aids that have both Auracast and telecoils. Include written materials. Give demonstrations. And one demo isn’t enough. Do it again and again. Offer a list of places in the community where you can try Auracast and where you can try neck loop devices. And by the way, these new Auracast neck loop devices work really well. So that’s another thing that people with telecoils can now be more assured of, that these neck loops are matched to the receivers. And then basically I nudged my patients to go try it out. I didn’t take no for an answer. You gotta tell them, go try it out for your next appointment. And then as a professional, you always have to try the technology yourself. So pick up the listening devices, listen how they work, because it isn’t just the Auracast system, it’s what’s feeding the Auracast system. The microphone, if it’s just one mic above the stage versus nicely closed microphones. So those things need to be done. And then for consumers, while I’m in this mode, for consumers, I have two pieces of advice. You have to learn how— anybody can use Auracast. You do not need Auracast in your hearing aids. It’s nice if you have it. It’s slick. But if you don’t, you need to figure out how it is that you’re going to connect. Do you have telecoils? Yes and no. If you don’t have telecoils and don’t have Auracast, how are you going to use Auracast? And then the second thing that we’ve already, you know, beaten a little bit up is you got to speak up. Because if you’re unable to hear, there’s other people who aren’t hearing either. And so you need to team up with other hearing aid users, cochlear implant users, you know, there’s hearing loss support groups. But the Center for Hearing Access is also bringing like-minded people together. And if those activities include your professionals, it’s going to be all the better. You know, you can’t go at this alone. And I, well, a third piece of advice, I don’t think any consumer should go see their professional without a piece of information to share with their professional. If they’re aware that a handout is practical, bring it to the professional who’s a busy person and may have never been to the website that the Center for Hearing Access and everything that what it has to offer. So, and I’ll just add, so I just look at things systemically. So looking at the providers to be initiating that conversation about here’s how you can hear better wherever you are and listening to what their needs are. But it’s also on the consumer, user, patient side to be saying, I want to hear, I’ve heard about this, Help me. Here’s a handout with it. And for people who don’t know the difference, we all have stories about just— it is an emotional experience for people when they can hear clearly again. And so they can try it out. We also have 1-minute videos listening in the loop or in the assistive listening system and without. So that you can hear what the difference is, or you can hear it in the provider office. And we need to remember that not everybody wears hearing aids, so people can borrow the headphones. You know, maybe they’re not ready for hearing aids, whatever, they still have the right to hear, and they still can borrow this equipment and use it. As well as, I work a lot with low vision people, And they also love the clarity. And they know what voices to listen. It’s not so much work. ADHD, it’s for a lot of people. And so working with the facilities, working with the audiologists, working with the consumers, it’s about helping people have better hearing access. I love that. Well, so thank you both for being here today on the podcast, and our listeners can find all the resources we discussed today at centerforhearingaccess.org. And just as a final reminder to our listeners with hearing loss, hearing access is your right. It’s not a favor. And the more of us who ask for it, use it, and speak up when it’s missing, the faster it will become the standard everywhere. So thanks again for joining us on This Week in Hearing. Until next time, thank you. Thanks for inviting us. Thank you, Shari. Thank you.