The Hearing Loss Association of America During COVID Times

In Episode 4 of the Hearing Tracker Podcast, we had the pleasure of interviewing Barbara Kelley, the current Executive Director of the Hearing Loss Association of America (HLAA). Kelley discusses the challenges her organization has faced as a result of the COVID-19 pandemic. To keep members safe, the HLAA converted its annual in-person convention into a virtual research symposium, and numerous Walk4Hearing fundraising events were moved online. Throughout the pandemic, the HLAA has continued to serve as a critical support hub for people with hearing loss.

Episode transcript

Steve Taddei (Host): Thank you everyone for tuning in, this is the Hearing Tracker Podcast. On this episode, we are joined by Barbara Kelley, and she is the Chief Executive Director of the Hearing Loss Association of America. Barbara, thank you so much for joining us.

Barbara Kelley: Thank you, Steven. I'm pleased to be here.

Host: Can you tell us a little bit about yourself and what you do within the world of hearing?

Kelley: I sure can. As executive director of the Hearing Loss Association of America, we focus on opening the world of communication to people with hearing loss through information, education, support, and advocacy. Our national office is in the Washington D.C. area and that's where we have our national staff. So, I lead that team in the operations of fulfilling our mission, which includes programs and services and our public policy efforts at the national level for people with hearing loss.

Host: And, I know there's a lot of those programs and different services that I'd like to talk to you about today. COVID is obviously a really hot topic right now. Though it provides barriers for all of us and has had a very significant impact in all of our lives, what are some of the struggles that you have seen or heard from the members of your community that are unique to people with hearing loss?

Kelley: There are, I'm glad you asked that. When the pandemic first hit in March, I think everyone, with and without hearing loss, felt that sense of physical isolation from people. So what we heard from people was that when you put hearing loss in that mix, there was an added layer of isolation because of being cut off from the world. And so, we realized that people needed to keep that sense of community together and not feel so isolated. So, we began immediately with planning virtual meetings and online webinars, and we found that people were really craving to stay connected. I think that was going across all aspects of life, not just people with hearing loss. I think we all were feeling that no matter what our circumstances were. But there were other issues, communication access issues that were especially challenging. People were now having to work at home, and with a lot of Zoom meetings and virtual meetings, they needed captioning on these meetings or some type of accessibility. And just because there's a global pandemic, doesn't mean that somebody's civil rights stop. People with hearing loss still need access. There were people all of a sudden taking courses online in college. Then of course, the big barrier was in medical settings, and especially with face masks at the beginning. And, face masks continue to be a really hot button issue because most people use visual cues, even people with mild hearing loss. When you put a face mask on someone, the sound immediately is muffled. And, there's some varying opinions on how many decibels that sound is muffled, I've heard anywhere from five to 25 decibels, the sound is reduced. But also the visual cues with lip-reading. So, the tool that everybody had in their toolbox for lip-reading and visual cues was now all of a sudden cut off with face masks. And then, in some cases you add six feet of social distancing... communication is really tough. So, I would say the hot button issue are face masks. And, we were really pleased when the Centers for Disease Control put something on their website, making people aware that clear window face masks are an alternative. But the problem is, the general public isn't wearing clear face masks. So, it's really a barrier.

Host: The most prevalent type of hearing loss is a high-frequency hearing loss. And, what that means is you are gonna struggle with speech clarity. It's going to sound people like are always speaking with poor articulation or that everyone's mumbling. So you're right. If you do have a hearing loss like that, these face masks are exacerbating the exact issue you are already struggling from. So, what recommendations do you have then for people who are struggling with losing those visual cues and then losing that clarity of audibility?

Kelley: We have a section on our website just focusing on COVID, and there are some recommendations in there for face masks and we have a webinar on face masks as well... so can go to hearingloss.org. But, a lot of people are using speech-to-text apps. If they get put in a situation where the face mask can't be removed, especially if you're in a doctor's office or a medical situation, they're opening up their speech-to-text apps on their phones and using those. I've heard all kinds of different coping strategies. If you go to visit your doctor, there have been doctors who have been willing to pull down their face masks for communication. But, you know, we also know that these face masks are very important to prevent the spread of COVID. So, we don't really want people pulling down their face masks. It's a tough issue. But the speech-to-text apps have been working... I know some people who have asked other people to wear clear face masks. But, the clear face mask vary in all types of designs and qualities. And, some are homemade, and the clear part of them tends to fog up. So, they're not perfect. There is one that's FDA approved in medical settings. But, again, not a lot of people know about it, and there's just not a lot of prevalence of clear face masks.

Host: Now you had mentioned also that closed captioning is a big issue. As pretty much everything in the professional world and the educational world, and even everything in our personal lives goes to these virtual methods of communication. What resources are out there to provide accurate, real-time closed captions?

Kelley: Well, that's a great question. When HLAA puts on an educational webinar or a virtual meeting, we can follow our own best practices and we hire a real-time live captioner to caption our webinars. But of course, everybody isn't in that situation. So, there are some automatic speech recognition applications out there that people have used with online meetings. Some are free, some you can pay for and have an upgraded service. And, automatic speech recognition has been an option. Of course, there are some very good accuracy rates, but I know when we put on a meeting or a webinar, we will hire a real-time captioner that works very well with the Zoom platform.

Host: And, I believe I've also seen that Zoom itself does offer closed captioning inside of it.

Kelley: I'm not sure, I think you're right. I know they have the option for captioning, but I think you have to plug in that real-time closed captioner in there. However, Microsoft Teams has an automatic speech recognition captioning set up, which is really great, and Google Meet has the same. I know that some people will use the free options of speech-to-text apps like Otter or Ava. They will use those along with a Zoom meeting, and run it alongside with their phone. And, I heard that Ava does integrate really well with Zoom. But there's all kinds of apps out there that people can use, and people are being really creative during this time. But, I think as technology that we're all forced into using, I think that these automatic speech recognition captioning platforms are gonna come along with it. I think we're gonna see greater access, and I think we're gonna see technology innovation, which is really gonna be great.

Host: Definitely. And I know I've seen people, as you've mentioned, being really innovative with their use of common technology. For example, Google Documents has a very good voice-to-text transcription straight within it and you can even use that in real time.

Kelley: Yes, exactly. And Live Transcribe is another one that you can use on your Android phone. It's not available on the iPhone, but people are being creative and that's great.

Host: One of the national programs you have through the Hearing Loss Association of America is Get in the Hearing Loop, and that advocates for loops and telecoil systems. Can you tell me more about that?

Kelley: I sure can. This one just is so amazing to me because it's a national program, but it's really led and driven by passionate volunteers from across the country. Hearing loops are a very basic technology. It's an audio induction loop and it provides direct sound to the hearing aid or cochlear implant by way of a telecoil. And, that blocks out background noise and provides direct audio input. So, Get in the Hearing Loop program is fueled by volunteers across the country who advocate in their communities for public places to have hearing loops. And, on our website, we have a robust offering of a toolkit of information about hearing loops, how you would advocate for one... And, I'm really so pleased to say that there's passionate people across the country promoting hearing loops and accessibility in their communities.

Host: You know, Barbara, I've heard that before. Unfortunately, the burden falls on people with hearing loss to form this almost small political movement to get loops installed in local venues, which is a shame because as you stated, they can transmit signal directly to hearing aid and cochlear implants... ...if you have a telecoil or t-coil, as it's sometimes called. So, it's great to hear that you are offering those exact resources.

Kelley: There are, and you bring up a really good point, is that if people don't ask for these things or know that they're there, then sometimes they don't get used. And also, people who have loops in the facilities, the quality could vary depending on the microphones, and are the microphones working? And, if people don't ask for them and test them and use them, they might never realize the benefits of a hearing loop.

Host: Another thing I wanted to ask you about is we see cases of music-induced hearing loss increasing significantly in younger people, and this is largely a result of earbuds and increased use. Are there any initiatives through the Hearing Loss Association of America to improve awareness and provide education to families?

Kelley: Yes, October is National Protect Your Hearing Month, so this is a really timely question. You know, Steven, noise-induced hearing loss is completely preventable, yet it's totally irreversible. If you've ever been to a concert and you've come out and your ears are ringing or the sound is muffled, that means that the hair cells in your inner ear have been damaged. Now, that doesn't mean that you've lost your hearing right there, but if you do this over a lifetime, and now we see young kids with earbuds and loud music, and you do this over a lifetime, it's definitely gonna damage your hearing. We're also seeing the other end of the spectrum with the baby boomer generation, who didn't even know about hearing protection, who attended all those rock concerts. So, what we see is age-related hearing loss could just be a lifetime of noise damage... that by the time you're over 50, you start having hearing loss. We do have a section on our website with some resources for protecting your hearing. And, we also partnered with other organizations to put out this public service campaign called Hear Well Stay Well. And, in part of that is some PSAs that highlight younger people in hearing protection. We also see this year at our Walk4Hearing, which has gone virtual.... protecting your hearing is also part of the educational programs at the Walk4Hearing.

Host: And, I really liked that you mentioned earbud use. Everyone nowadays is able to walk around with basically the ability to provide the volume that we would have traditionally seen only in a live venue situation... in their hands or in their pockets. There have been several studies looking at the amount of volume that you actually have, or the sound pressure level in your ear canal from the average earbud, and it is comparable to that of a rock concert. And, it is an injury every time you feel that muffled sound quality after a significant sound exposure or ringing in your ears. Injury has been dealt. Now, normally your hearing does come back, like a quote unquote, normal, but there is that still underlying damage that has already been dealt. And, I know recently I've looked into a few different apps and I do like seeing technology providers having greater awareness of this issue. And, I know I've seen the Health app on the iPhone. They will actually provide headphone audio levels now, and this is not something I knew about beforehand. I think it was something I came across while looking at content on the Hearing Loss Association of America's website. But, it will actually give you averages based on your specific headphone that you are using. And, therefore, you can actually more accurately monitor what is a safe listening level. Ya know, with music-induced hearing loss and noise-induced hearing loss, it is permanent and irreversible. A good comparison that I like to use a sun exposure. When we worry about sunburn, we think about what time of the day is it, so how bright is the sun and how long will we be exposed... and, it is the same with sound... We need to consider how loud is the sound, and how long will we be exposed to it.

Kelley: To what you're saying is now we do have that high quality sound right in the ears of people, then we have these apps where you are able to measure safe levels. But, I think the tough nut to crack is young people, because there's a natural thing about young people that think they're invincible, that nothing is going to hurt them... And, it's really hard to get that message through to them. And I know, our son ... it was a couple of years ago, and he and his friends were going to their first concert. We went through all the safety protocols, and at the end I gave them all earplugs and I explained why they should wear these and everything else. So, they took them and they agreed. And, then when they got home, I saw in the back of the car that those earplugs were never taken out of their package. And, especially given what I do for my life's work, I couldn't believe that these boys ignored my advice. But, they just don't believe that they're going to be hurt by sound. So, it's a really hard message to get through to young people. And, the National Institute on Deafness and other Communication Disorders has a program aimed at young people, called It's a Noisy Planet. And, I think we're going to see a longterm societal impact that's even greater than the baby boomer generation we have today where every single day, 10,000 people turn 65, and a byproduct of that is hearing loss. There's a high incidence of hearing loss in older people.

Host: I know you also offer resources regarding cochlear implantation. Can you give me more information about that?

Kelley: Sure, people in the HLAA community are people who want to stay in the hearing world with technology. And, that is everything from hearing aids to cochlear implants, to assistive listening technology, to apps on the phone. And, cochlear implants are a viable option for people with severe to profound hearing loss who can no longer benefit from hearing aids... and our community, there's a higher uptake of cochlear implant use. I think it's about 21% among our community of people who choose cochlear implants as an option. However, in the United States, only 5% of people who can benefit from a cochlear implant have one. And, we hope that we're part of educating people of all their options, and that's what we try to do... We just believe you give people really solid, great information so they can make their own choices about their own hearing healthcare. (music)

Kelley: Well, that's the big question of the year, Steven. I think that anything that we were doing in January of this year is not what we're doing now. And, the upside of COVID is that we always planned to do more things virtually. We have chapters across the country holding virtual meetings and offer more digital content. So, COVID kind of accelerated this for us. And, I think it did for a lot of people, which could be the new reality of how we're gonna to operate. For all the online interactions, you can't replace that face-to-face interaction and that peer-to-peer support. So, I'm glad our Walk4Hearing is one of our most fun awareness creating in the community events. And, it takes place in 20 cities across the country, in the Spring and in the Fall. And, this is where we see the families... and that's why it's so much fun. We see children with hearing loss with hearing AIDS and cochlear implants. and their parents and their families, and everybody comes out. And, children can see other children. They may have never met another child with a hearing aid or cochlear implant. And parents can share resources. So, it's a really fun event. It's also a fundraising event. There are teams and there are people who fundraise and sponsors, but it's also an awareness event. So of course, when COVID hit in March, we couldn't have our in-person Walk4Hearing's. So, we pivoted very quickly to virtual walks, and I have to admit, we really didn't know what that was going to look like. And, it was so funny because I would say to people, we're gonna have a virtual Walk4Hearing, and they would say, well, how will that work? And I would say, I really don't know, but we're gonna figure it out. And we did figure it out. And, this fall we've already had three big walks, and this weekend we have the San Diego Walk4Hearing, the North Carolina Walk4Hearing, and the New Jersey Walk4Hearing. And we have the Chicago Walk4Hearing, the New York City Walk4Hearing, and the Buffalo walk all behind us. It's about a 40 minute celebration where people come together, there's educational aspects of it, there's fun aspects of it, and then people get to share in real time, and then people go out and take a walk. So, I have to admit, they are a really delightful part of my weekend because I get to go to every single walk this year. Portions of the event are prerecorded because that's where we get our best quality of things, but then the meeting or the walk is opened up. This year, we have an educational partner who's the American Girl doll. And, American Girl's doll of the year is named Joss Kendrick, and she wears a hearing aid. So, they've chosen HLAA to be their educational partner. So, with the Walk4Hearing, because we have so many children, we have a contest for children to either draw a picture of why they walk with Joss or submit an essay. And, in each walk, we have a winner. It's usually a girl who wins the doll and we show her... She's usually at the walk and she's so excited to learn that she won this doll. And, then we have a lot of families talking about why they walk and how much it's meant to them. We also have alliance partners in the Walk4Hearing, which could be speech and audiology departments in hospitals or universities who are raising money for their program. And, we have a revenue share where they can raise some money as well. It's just a really fun and inspiring sharing, and it is done on a Zoom platform.

Host: There is a lot of information that is provided on the Hearing Loss Association of America's website, hearingloss.org. If you could go to the website and recommend one thing for people to go and look at, what would you say is the first thing to check out, or what would you not want to miss?

Kelley: The one that gets the most hits is our hearing help. Most people who come to the website, they've just learned they have a hearing loss, or they think they have a hearing loss. And, even before they've admitted it to anybody else, they can get some basic information there on the website, and they can learn ... I think ... very quickly that they're not alone. This is not a problem that just affected them. And, I think the main message of our website is that you can do something about it. There are things you can do about hearing loss. A few weeks ago, our California State Association held a virtual meeting, but they opened it up to everyone in the country. I was on that meeting because I was the guest speaker. And, during the question/answer period, a woman came on and she said, she didn't have a question, she just had a comment. She said, I just found your website, and I saw this virtual meeting and I was so excited. She said, I didn't know that there were other people like me. I didn't know that there were meetings like this. And she had tears in her eyes. I think everybody in that meeting, including myself, were feeling that sense that we found the community. And, that's what we hear all the time, is people say, I didn't know about HLAA. Why didn't my audiologist tell me about HLAA? And, they were so happy when they finally learned about us. The other part of the website that I think is really interesting, where if people are ready, they can dive a little bit deeper and they can go into our webinar learning sessions, which are all recorded for playback. And, we have these webinars very frequently, usually monthly, and they're open free to the public, and they're captioned and then we record them. And they're on various topics. Like I said, we had one on face masks this year... We have audiologists speak. We have all kinds of topics. So, I think if people are ready to dive into those, they can really learn some really good information. We've had one on speech-to-text apps and on technology. So, there's always something there for somebody who's ready to go a little bit further.

Host: That is a fantastic takeaway that if you are struggling in your life, if you've just found out that you or a family member does have hearing loss, you are not alone. There are plenty of people out there providing resources, eager to help, eager to share their story with you, so hopefully then you can get back to living your life as good as possible. Is there anything else you would like to add or you'd like to share?

Kelley: Well, another thing that happened to us this year because of COVID, that happened to a lot of people across the country, 'cause we couldn't hold our annual convention, we have an annual convention each year and it was to be held in New Orleans. This is where people with hearing loss come and we have an exhibit hall and trade show, where there are companies there... We have a research symposium sponsored by NIDCD. We also have workshops. And, there's all that, but there's also a lot of fun and a lot of peer-to-peer support. So, that had to be cancelled. So, what we did was a mini conference online in June, which included the research symposium on tinnitus, And, that's all available on our website for playback as well. Right now, what we're trying to do is offer more digital content. We know that more than 50% of our community subscribes to our free online e-news, and that is just chock full of information that comes twice a month. So we're trying to meet people where they are and just give really good information... solid information, and be the unconflicted voice so people can make decisions about their own hearing health care.

Host: Is there specifically an area on your website that you would direct people to go to if you just found out you had a hearing loss, you want to speak with someone. So, is there a group chat element or an email for people to contact?

Kelley: Yes, there is. There are several mechanisms. We have local chapters across the country who meet with great programs, with peer-to-peer support. We also have Facebook groups. If people go on, they can click the icon. We have a group for cochlear implant recipients or people interested in cochlear implants. We have one resource that is really terrific, which you can find on our website, is Mayo Connect. And, this was really interesting because it's the Mayo Clinic, and it's like a chat forum where people can go on and choose a topic of a medical condition and chat about it. And, we found that there was no option for hearing loss, which is absolutely incredible because one-in-seven people in the United States has a hearing loss, and it's a third most prevalent health condition in the United States. So, with the help of our partners in Denmark, the Ida Institute, we approached Mayo Connect and there is now a chat on hearing loss. And, while you might not find HLAA specifically mentioned in there, we do have people go on who are part of our community and talk about HLAA so people coming can know about our organization.

Host: Hearingloss.org is a fantastic resource for pretty much anyone who could be associated with hearing loss, a family member who has hearing loss. I know you offer communities for parents, for kids, for veterans, cochlear implants, as you mentioned. I've seen information on there about financial assistance and various state agencies and programs such as amplified telephones. I even came across a section that talks about legal rights and legislation regarding accessibility and hearing loss. And, that is all found on hearingloss.org. Barbara, thank you so much for everything you do for the community and your tireless efforts to provide better information and improve people's quality of life.

Kelley: Thank you, Steven, I really appreciate this opportunity and we welcome anyone to get in touch with us any way you can. We're happy to reach back out to you.

Host: Thank you again, it's been a pleasure having you on. If you want more information, you can check out hearingloss.org. Thank you everyone for tuning in, this has been the Hearing Tracker Podcast.