Improving Hearing Health Through Education, Advocacy and Community Involvement

Amyn Amlani 0:10
Welcome to another edition of This Week in hearing. This week, I am absolutely excited that we’re having the conversation with the folks at the Northern Virginia Resource Center. I think our viewership is really going to be delighted by the services that this group in this facility offer. And I think it’s fascinating that we’re actually headed back towards our roots. So let’s get started. I’m, again, I’m really thrilled about this whole thing. So with me today, I have three panelists. The first of which is Joan Ehrlich, PhD, Joan, if you wouldn’t mind sharing with with the audience who you are, please,

Joan Ehrlich 0:52
Sure, hi, Amyn, I just want to say real quickly that I am a big fan and listener of your podcasts, I’ve learned a tremendous amount. And so I’m really honored and thrilled to be talking with you today. So my background I worked for over 30 years in the field of deaf education, I worked with deaf and hard of hearing students from preschool all the way through high school. And after, like I said, over 30 years of that when I retired, I went to work for our local community college, which covers a huge amount of territory. And initially, I was the person who coordinated all of the services for the deaf and hard of hearing students who came. And as you’ll find out a little bit later, this area has a larger than usual population have deaf and hard of hearing people. So we had a large group of students who we served. I later became the director for Disability Services at the same college. And since then, since retiring, I’ve come back also to my roots, and now having for NVRC, in the capacity of an outreach specialist for Loudoun County, one of the many counties that we cover. And that’s what I’m doing now. And I’m thrilled to be with this group and Bonnie, when she introduces herself, she’ll talk more about what we actually do as outreach specialists.

Amyn Amlani 2:25
Yeah. And you know, again, I’m really thrilled and thank you for your service to this population. And I know we’ll get into why there’s a larger group of of hearing impaired and deaf and individuals there. Bonnie, would you share with us a little bit about yourself, please? Sure. I

Bonnie O’Leary 2:43
mean, thank you on my name is Bonnie O’Leary. And I am what they call a late deafened adult. And I joined NVRC staff in 2001, basically with a task to develop an outreach program for adults aging into hearing loss because this is a huge demographic. So we developed a three part program. The first part talking about hearing aids, the second part talking about hearing assistive technology, the third part talking about communication strategies and the emotional impact of late onset deafness. And we presented these programs in retirement communities, libraries, assisted living facilities, churches, anywhere where seniors congregate as groups, and actually won a distinguished Partner Award from Fairfax County’s Department of Neighborhood and Community Services. So that was really kind of exciting. And also, it’s very important for hearing people to understand the challenges in communication with people who don’t care well. And so we developed trainings for emergency responders, healthcare professionals, employers, activities, directors, any group where they have to communicate with older people who didn’t hear well. So Joan and Debbie do this as well. And it took a lot of work to get it going. But we really do we reach a lot of people and they appreciate the information.

Amyn Amlani 4:24
Wow, the outreach is just incredible. And I’m looking forward to hearing more. Our third panelist is Debbie Jones, Debbie, if you wouldn’t mind spending a little bit of time and sharing your about who you are with the audience, please.

Debbie Jones 4:39
I’m Debbie Jones assistive technology manager at NVRC. i My connection to hearing loss is that I grew up with a mother who was hard of hearing. She lost her hearing at 13. So I’ve always lived with a person with hearing loss. And then also growing up I was fascinated by sign language and took the opportunity in college to start learning it. And I started here at NVRC in 1995, where I have continued to learn sign language, and learn a lot about communication in general from the folks who work here and come here for our services as well. A lot of what I do is information and referral. So I answer requests for information and help folks find the resources that they need in their local communities. Another big part of what I do is working with the Technology Assistance Program. The Virginia Department for deaf and hard of hearing provides this program which makes sure that specialized telephone and signalling equipment is available to Virginia residents who are deaf or hard of hearing, Late Deafened or have a speech disability. Also deaf blind, making sure they can stay connected with family and friends, and make sure that they can do what they need to get done.

Amyn Amlani 6:05
Wow. All right. So now that we’ve got our panelists introduced, let’s talk about who you are. So what is NVRC?

Bonnie O’Leary 6:15
Okay, well, I’ll start off with that, if it’s okay, we’re actually a 501 C3 nonprofit organization. And we have a mission to empower deaf and hard of hearing individuals and their families through education, advocacy, and community involvement in town.

Joan Ehrlich 6:40
Yeah, so as a nonprofit, we are guided by a board of directors. And as stated in our bylaws, our directors have to be at least 51%, representative of Deaf, the deaf or hard of hearing community. It turns out, in fact that we have larger than 51% serving on the board who have some kind of hearing loss. The other part of that is that all of our staff, and our directors really represent the whole gamut. So we have culturally Deaf people who, for whom ASL is their primary choice of language. We have late deafened members, hearing people who are hearing who sign some of us sign and signing use cued speech, I really embrace and I will say that as somebody who has been in the field of education for as long as I have, when I first met NVRC, which was really many years ago, one of the things that I just loved about it from the start, is that we embrace every means of communication. So we welcome sign language captioning, all kinds of assistive listening technology. So that because our goal above and beyond everything is for, for communication, like Bonnie said, for communication to happen across the board, we also represent probably every age range. And we’ll talk about that a little bit more later. But also, you know, really pretty much from birth, all through every generation Gen X. Millennials. Of course, as Bonnie said, you know, the the baby boomers, you know, we really cover all of the different age groups. So we really are a mix of of everybody.

Amyn Amlani 8:37
Wow that’s incredible.

So now that we know who you are, tell us a little bit about what you do.

Debbie Jones 8:44
Since I, I have been here at NBRC. Now the longest. Just to let you know a little bit, as as was mentioned, we were founded by the community. In 1998, a group of local leaders from the deaf and hard of hearing communities got together and advocated for funding from Fairfax Arlington, all the local counties. In this area, we’ve got about 250,000 folks with hearing loss. And over 5000 of those are deaf. So we’ve got a large area, a large community. We are located so close to Washington, DC, and there’s so many deaf and hard of hearing folks who are in this area because they work for the federal government. You know, Gallaudet University is here in DC, the only liberal arts university for the Deaf. Industry, military, there’s there’s, as we mentioned, the mix of folks that are involved. And so helping those folks find the resources that they need in the community, you know, and from folks who know how to communicate with them has always been a big part of this. We’re located in Virginia, but we actually have a farther reach than that. Between our email news and our website, and some of the advocacy we do, we actually do touch quite a large population.

Amyn Amlani 10:21
Wow, that’s incredible. That’s incredible. So you have this large reach you provide all of these speech, communication tools for these individuals, which I think is fantastic. How do you do it?

Joan Ehrlich 10:37
So here’s a number of things that we we the services we provide are just the programs were engaged with. At the beginning, I think Debbie mentioned this, a lot of nvrc was looked upon as just a gathering place for people who are deaf or hard of hearing, to be able to come in and interact with family, friends and other members of the community. As time’s going on, we’ve collaborated in many ways with other facets of the community. So for example, sometimes we get involved in community fundraisers, as again, as a nonprofit, we do have to find a number of ways to keep ourselves afloat. So sometimes we’ve partnered, let’s say, with a local restaurant, or you know, a county event, where when money is made, we get a little bit of the proceeds from that money that comes in. And that’s another great way for us to get out in the community and mingle, let people know we’re here. Lots of deaf people will come to our events because they know there’ll be other people there who they can communicate and socialize with. We have collaborated with our local school districts. Our executive director right now is a mentor in the elementary school nearby, and goes to spend time once a week with deaf students and they get to have deaf adults because our executive director is deaf. They get to have a deaf adult as a mentor. We’ve done and I know Debbie has done a lot of this, Debbie has gone out and done presentations, and assistive technology demonstrations to school aged children and their families. never too soon to start teaching these kids how to use assistive technology. Recently, Bonnie did several online Oh, and Debbie as well did some online presentations for AARP. And that wasn’t, you know, a national audience right there. We’ve also collaborated in many ways with the Hearing Loss Association of America. And their headquarters is in our backyard up in Bethesda, Maryland. You know, we’ve helped with some of their conferences, we’ve done their Walk For Hearing every year, we’ve collaborated with them in many ways. Also, our executive director currently is a tester. She calls herself Oh, they call it a trusted tester for Google. And what they did is they’ve given her a phone. And then she can, whenever they have apps available, she can download those apps and test them for efficiency and quality and things like that. We’ve, we’ve collaborated with our local governments, when they’re create doing some new construction on senior community centers, senior living communities, or even the rec centers, I know Bonnie’s gone in and help them and advise them on the acoustics because there’s a lot of modern aspects in in construction. Now, that is very glossy and nice to look at, but not always the most listener friendly. So she’s been a real help in that area. And another a few others is we have a resource fair that we’re very proud of that we call celebrate communication. And that happens once a year. And again, we have exhibitors and sponsors and members of the community come and learn all about new gadgets and new strategies for communicating and those kinds of things. And we also go and we will go to the resource fairs of other localities like the community centers and senior living facilities. We will go in and exhibit our assistive technology and just let them know more about our resources. It’s so kind of a whole range of things they’re well,

Amyn Amlani 15:05
and you guys are quite extensive in the in the, you know how what you do and how you do it. Is there anything else that we wanted to add? It talks about free hearing screenings and all that is that part of this, this equation here that I have I on my sheet,

Debbie Jones 15:22
as John mentioned, we do work with technologies, a lot of what I do is in our technology demonstration room, we have a full room setup where folks can come and try headphones, signalling systems, TV listening devices, personal amplifiers, all kinds of signaling devices, doorbells, alarm clocks, that sort of thing. Because NVRC doesn’t sell any devices, we only demonstrate. So we try to be kind of a neutral space where folks can come and then try things out and ask questions, and see if if these devices might meet their needs, before they make the decision to either purchase it or to apply for something through the state program. The Technology Assistance Program is administered by the Virginia Department for deaf and hard of hearing. And as I mentioned before, I’d specifically telephone and signaling equipment at a lower cost. So it helps folks who qualify, get the equipment low cost or free, depending on their financial situation, to make sure that they stay connected with the world around them

Amyn Amlani 16:34
deand Debbie, can you talk a little bit about how these individuals get to your facility, so they can try these these tools?

Debbie Jones 16:42
Sure, we, a lot of times, we will make appointments for folks to come in, they can contact us by phone or email to set up an appointment and we can sit down with them in the tenant in the demonstration room. We’re located in Fairfax, we’re real close to where 66 and route 50 Cross. So we’re fairly easy to get to, it gets a little twisty back in the neighborhood where we are. But we have been able to get folks to us. That’s always the ideal situation if they can come to our center, and try things out. Because of course we have everything hooked up in that room. For folks who are not able to travel who are not able to get to us, it is possible for us to make appointments to take equipment out to them and see, you know, what might be helpful for them. So that they can try that. Try it, you know, in their home where they are.

Amyn Amlani 17:38
Yeah, in just to clarify, do you have private practitioners and other potential colleagues in the neighborhood that refer to you? And do you have those relationships? So how does that work?

Debbie Jones 17:53
We certainly try. We have definitely developed relationships with the local county services. So many of the local counties, social services, Family Services, Area Agencies on Aging, will refer folks to us to find to find us and access these programs. We do have some local audiologists as well. Although recently there’s been some turnover of the audiologists and we haven’t found the new ones yet. But we always do try to make those connections to be a resource for the entire community.

Amyn Amlani 18:33
Wow, that’s incredible.

Bonnie O’Leary 18:35
I would just like to say a few things about the presentations that we do. A lot of people don’t realize how huge a topic hearing loss actually is. We sometimes I’ll get an email from someone who says can you come and talk to our group about hearing loss as they will what would you like to what would you want to talk about it? And you think you have this lens? Do you want to talk about hearing loss as pathological situation? Do you want to talk about hearing aids do you want to talk about here, and they go, oh, so we have an overview program that we do just called ‘Help, Where did my hearing go?’ And that’s a little bit about how we lose our hearing a little bit about hearing aid a little bit about hearing assistive technology and a little bit about communication strategies. And typically what happens is then I will go back because they find a certain topic, very interesting and they want to know more about it. And we also have a topic Joan does one about healthy hearing, and how to keep your how to keep the hearing that you have left, which is of course very, very important as well. And one of the things that is touching to me as the late definite adult is when I do these programs, how many people will come up To me afterwards to tell me that I’ve been talking about their mothers, their husband, their wife, their somebody in the family, almost with tears in their eyes, like I have no idea when I could do to be helpful. So it’s really like double dipping, because in their job now they’ve learned how to communicate with someone they’re caring for. And they also have learned how to help somebody who is in their personal life. So that’s that’s been something that is very, very gratifying. I think all of us are safe at what we do, brings us a lot of personal satisfaction, because we know at the end of the day that we’ve done something really helpful for someone. And communication is so key to living, that when we learn how to communicate better with someone who’s been cut off one way or the other, it helps everybody.

Amyn Amlani 20:57
Yeah, social isolation is, is certainly a damning thing. 100%,

Debbie Jones 21:07
particularly during COVID, that’s been a huge problem for our deaf seniors, for folks who use American Sign Language as their primary communication. So much of their socialization historically, has been in person and having to stay home. And switch to online communications was a real challenge. For our Deaf senior population. We got lucky enough that we had a grant to set up the Deaf Senior stay connected program. And this is a program which originally was focused on helping thing making sure Deaf seniors stayed in touch with each other. But then we also realize that, that we could expand that and set up some online socials, to include college and university students learning sign language, and interpreting students and getting them together with the Deaf seniors, both for socialization, but also to learn the history, you know, her learn the history of the deaf schools, their experience growing up, you know, in the 40s, and 50s, and 60s, and how different that is from nowadays, where we have mainstreaming as our primary educational system. You know, the, having the students learn signs from older deaf folks. And then the older deaf folks have an opportunity to learn new signs, new vocabulary from the ASL students. And so it’s this real exchange, and it’s been a great benefit. And, and we were recently recognized for our deaf seniors stay connected program. So that was, it’s been really exciting to see that develop and grow as well.

Amyn Amlani 23:06
That’s, that’s incredible. That’s incredible

Bonnie O’Leary 23:10
well to talk a little bit about the hearing screenings that we do. And this is a service that a lot of people really enjoy because it’s free. And because we don’t sell anything, you know, that’s, that’s a big point for us, because the whole atmosphere is very relaxed. And the information we give is very objective, so they can make up their own lines and make their decision. So the screening is Starkey, they have a wonderful soundcheck app on an iPad. And it only takes six minutes. And all it does is give them tones. But the point of it is to have a little peek at what their hearing is doing, to see whether they could benefit from going to an audiologist. And that gives them the chance to ask all these questions learn what they should be asking the audiologist and talking about hearing aids in an atmosphere where there aren’t lying in front of them saying this is 5000. This is 7000. You know, so they they do enjoy that. And I think that sometimes we’ll get somebody who has a hearing aid, and they want to complain about it. They want to have it fixed. They want to have it clean. They want to they want us to do things that we’re not qualified to do. We would never touch anybody’s hearing aids. But it gives them the chance to talk about next steps and the kinds of things to consider what new hearing aids are out there. But we try to tell them and this is a message that we give to everybody is their hearing loss is like a fingerprint. And so what works for one person, it’s not necessarily going to work for some Buddy else. So I can talk to them until I’m green about all the different kinds of hearing aids that are out there. But the person who needs to advise them is their health care professional, their audiologist or hearing instrument specialist, they have to do the full evaluation, and then have an idea about this hearing aid would probably work best with your hearing loss. That’s something that we can do. But they do enjoy them. It’s very popular. We screened about went before COVID, about 200 people a year. And we’ve been doing that now for a decade. So we’ve had the opportunity to sit one on one with about 2000 People just in that particular service alone. And it gives us the chance to listen to what their concerns are and where they have the most difficulties. And that helps us think about the kinds of programs we could be developing for them because it service.

Joan Ehrlich 26:01
Yeah, I mean, if I could just add to that, you know, as I said, Before, I listen to the podcasts a lot. And I’ve heard many practitioners talk about, especially with the advent of the over the counter hearing aids that are coming, I’ve heard a lot of discussion about all the apps that are now available, so that people can kind of run their own baseline test. But we we see from the working with the people we meet that most people don’t want to do that for themselves. They don’t either they don’t know it exists, or they just don’t feel the confidence. And it’s not necessarily just older people, although we do meet a lot of older people, but people just send the general public, if the whole concept of hearing loss is brand new to them, they’re not necessarily inclined to go and download an app and test their hearing for themselves. And equally important, like I think Bonnie said is they don’t necessarily know what the next steps are. So you know, even if some even if the app indicates that there might be a hearing loss than what we know. So that’s one of the reasons why we think this service is so critical.

Amyn Amlani 27:20
Well, and I think you touched on something that’s really, really important to the profession as we move forward into this disruptive age. And that is your services count a whole bunch. And people want the opportunity to be consoled – consulted with so that they can make the right decisions. And they don’t always have that. So, again, this is why I think this is why I was really thrilled about the things that you guys are providing to your community. Because I think it has really large reach, as people start to consider, you know, things that are happening in their respective areas.

Joan Ehrlich 28:00
Yeah, and one of one of the reasons that we welcome this opportunity to talk with you is we would like the providers, you know, the hearing health, the hearing health care providers to understand that for all the all the clients that they might see, in a year’s time, how many, many more are probably out there who are not coming and taking advantage of their services. And it would be great. I know for myself, I would love to think that this might encourage places to group like ours, so that they can serve their communities in a similar manner.

Amyn Amlani 28:47
Yeah, 100%, we haven’t, we haven’t really serviced the masses as we need to do so 100%. I agree with that.

Joan Ehrlich 28:57
We were doing a quick count a little before we came on today. And we figured out that over the course of a year, we probably provide direct service to over 2000 individuals. But then when you look at our the reach of our website, people who visit our website, subscribe to our email news and follow us on social media. We reach out to probably as many as 10,000 people a year. And those those are not. I mean, it sounds it’s a rough estimate. But we keep pretty careful data because of course, as recipients of local funds, we need to report back every pretty much every touch that we make. So so those are pretty reliable figures.

Amyn Amlani 29:47
That’s incredible. That’s incredible. Anything else that you all want to add as we continue to discuss this important service delivery that you all offer?

Bonnie O’Leary 30:00
One thing I would like to say having been at NVRC, for what, 21 years now, the big change is the internet. And when I started at NVRC, our meeting room was always busy, busy, busy, because groups were meeting because they came in person that the internet comes along, and gives everybody the opportunity to get information online, to meet with groups online, to communicate with people around the world online. There’s a lot of great stuff about that. But what we will find when folks do come into us and talk to us is that they’re so happy that they’re finally talking to another person faced if they really need that support, especially if they are late death, and they didn’t know what to do, they go on the internet, they’re talking to strangers, they come to us, and they they connect with us. And for those of us on staff who have a hearing loss, then we understand what they’re experiencing. And so that that personal touch is so important, interesting that our value is just as strong, but in a different way.

Amyn Amlani 31:17
Yeah, in again, I think you you’ve all touched on so many important points. But that’s one that I think we, as a community as a professional community haven’t fully embraced. And that is the value that we bring in the necessity that’s needed for people to move forward. And that has to happen through trust. And trust doesn’t always happen through the internet, it has to happen between two individuals. And so as people are thinking about these disruptive tools that will be available on the marketplace, and it’s going to help some people don’t get me wrong, I think for the overwhelming majority, they’re still going to want to have that relationship with their provider, they’re going to want to talk to somebody. And I think that’s true even with technology. And I’ll give you an example. I’m getting ready to send my daughter off to college. And rather than just buying a computer on Apple, she actually went into the store, talk to somebody and says, Is this the right tool for me, which she wouldn’t have gotten that information just by looking at the specs and things online. So I you know, I think this is this is part of the nuances that we need to better understand as we continue to treat these individuals and service them. And I’m not just saying this, I think what you all have to offer is a model for what some providers are all providers need to start thinking about, and that is the personal touch the need to converse with individuals, I understand that, you know, sales are what generate revenue. But at the same time, you can’t, you’re not going to generate any revenue, someone doesn’t purchase anything from you. And it’s a funnel, right? It’s a sales is a funnel, and you have to start at the top and someone has to end up at the bottom at some point in time. And everyone’s journey is a little bit different. And we need to better understand what those journeys are. And embrace those relationships. So we can get people through these through these cycles, so that they can hear and communicate better, which is, you know why we’re here and the importance of what we do

Bonnie O’Leary 33:26
the profession, the audiology profession can misunderstand what we do. And that has happened a couple of times to the point where they feel like I don’t want my patients going to you, because you might talk them out of the hearing aids, I’ve just sold them. I don’t know where that comes from. But I think they have that feeling because we do have a certain amount of knowledge and education about it. That it might not be to the benefit of the audiologist to have people coming in. But at the same time, what we have found is exactly the opposite. Because by the time we’re finished telling people what they need to know, they go to the audiologist informed. And they know what questions to ask. And they do better with their hearing aids because they know what to anticipate how to adjust to them, which they’ve heard from us first because we wear them. So we are consumers that help them. So I think that in many ways we’ve been able to be helpful to the audiology community.

Amyn Amlani 34:31
Yeah, no 100%. And I’m going to go back to some of Debbie’s technology components, you know, it’s the hearing aid itself is only going to allow you to communicate to a certain point, you need other tools, you know, whether it’s a remote mic or a telephone or whatever, and we need to embrace that whole ecosystem. And I don’t think that our professional community has done that. Like it needs to be done.

Debbie Jones 34:55
Yeah. And having watched the technology change so much over the years, you know, where before it was TTY and amplified phone, and that was about it to now we have captioned phones, we have apps that can download to our mobile phones, to provide captions to provide voice to text. I mean, there’s so many more tools available. And I think people get kind of overwhelmed. Sometimes there’s like, technology, I don’t do technology, I don’t own a computer, I’m like, that doesn’t matter. This is something you can try, it never hurts to try it out. And if it meets your needs, it’s one more tool that you can take advantage of.

Amyn Amlani 35:46
In to your point, I think in some cases, the professionals don’t always know what’s available in the marketplace. So for example, you know, these mobile apps that do speech to text? Now, I’m going to ask a question, and we may have to delete this. But the question is, do you all provide resources that other providers can potentially use, even if they’re on the other side of the country?

Debbie Jones 36:12
For things like mobile apps, we definitely share that information. You know, because those are, those are pretty widely available. We listen to folks in the community, you know, we we do research ourselves and try things out. But we also ask the community, hey, what has worked for you, you know, what are the apps that you take advantage of, and, you know, so that we can try them out and then share that information on? So absolutely. You know, for certain technologies, there definitely is information that can be shared, no matter where you are. Obviously, the technology assistance program that I work with, is specific to the Commonwealth of Virginia. But certainly I could help you get connected with the program in your state, because most states have some sort of technology assistance available, whether through the relay service, or the commission for deaf and hard of hearing, or Department of Rehab, generally, are the ones that cover those.

Amyn Amlani 37:20
And I think you all have the basis for them of a model that other people can now build off of, that will allow them to be successful as we move into the future. And again, that’s why I thought this was really, really important. And I was really excited by it. Because, again, it’s going to be the linchpin between success and failure for private practitioners in the future. And maybe that’s a little too bold. But you know, I look at things from an economic lens. And as you look at consumer purchasing, and their, the way that they are viewing, a spending and with inflation increasing and all that the value proposition is not in the product, it’s in the person. And if you can generate that value proposition in an appropriate way, success is inevitable. And that’s why you see, you know, these these large, expensive entities like the Ritz Carlton, and, you know, Lamborghini, and McLarens, and, you know, all of those companies, Porsche, for example, survive, even in these turmoil situations. And then you find out that these companies that are, don’t have that same kind of customer service, they start to fall apart. And we’ve seen that in our profession, and we’ve seen it in others. And I think as we move forward and as as consumers become more sophisticated, that whole relationship is going to become more and more and more of the, you know, it’s going to become more and more of the important factor in survival. So thank you for what you do.

Bonnie O’Leary 39:05
Just thank you for giving us a little voice here. That’s very nice.