Hearing Loss LIVE! Podcast

Hearing Loss LIVE! Talks State Services

January 24, 2022 Hearing Loss LIVE! Season 2 Episode 4
Hearing Loss LIVE! Podcast
Hearing Loss LIVE! Talks State Services
Show Notes Transcript

Hearing Loss LIVE! tackles a big subject with this week's podcast.

If you need help from your State Services what does that look like?

We don't like the answer. 

Whether you are new to hearing loss or raised with a hearing loss and use English reading/writing for you primary communication, you need communication accommodations that work for you when you have to meet with an employment counselor. And we strongly feel state services lack training on what those accommodations are.

This week is all about letting states know we see what is offered and we are here to tell you it's time for change.

You can find the video version of this podcast at: https://youtu.be/IEE4MFzCQng

Support the show

Hearing Loss LIVE! Talks State Services. 
Julia Stepp: Hello, from Hearing Loss LIVE! Thank you for joining us today. Today, we're going to talk about state agency services and some of our experiences, and we hope to help you with some thought process, if you have to go to your state agency and get services, on information you can take with you for what you might need for your hearing loss that you may not have thought about. And we kinda hope that you will direct your state agencies to us, and maybe they can get some ideas of what hearing loss looks like because we all know it's not one size fits all. Well, we don't all know, and that's what we want to share with you today. I will turn it over to Michele and Chelle. Who wants to go first and talk about their experiences with their state agency? Michele?  

Michele Linder: Okay, I'll go first. I was realizing I didn't turn my microphone off while you were talking, Julia. Bad Michele. The first thing that's amazing to me about state agencies is that you never hear about them from your audiologist. All the years I went to audiologists and I moved all around, no one told me there were any kind of services available to me, even though I would ask. And so when I moved to Minnesota in 2006, I had just had a really drastic hearing dip before leaving Atlanta. And of course, because we moved, I had to look for a new job and I qualified for job seeker services at the Minnesota workforce. And they mentioned the Deaf Hard of Hearing Services Division. And they had an office in Duluth and that was the first I'd ever heard of them. 

And they suggested that I make an appointment there to see what kind of services they could offer me in my job search. And I did that. I spoke to the director and she was culturally Deaf although she wore a hearing aid. And we talked about the kinds of things that they do to partner with the workforce. If any issues came up in my job search, if an employer expressed some kind of a concern over my being able to do a certain aspect of the job with hearing loss, they would advocate with me and actually try to solve any issues that came up with equipment or whatever. Some of the other things, I learned about caption telephones, but back then you still needed a second landline. And then right soon after that, they became easier to have a caption phone. And I learned about mobile CapTel.

So I did learn some really good things there, but also the things I could have done without was the lecture on not using hearing impaired. I felt like I was a kid in the principal's office being counseled to not use hearing impaired because that lumped all of us together and we were very different. And we are very different. I have no problem with that aspect of it, but I almost left in tears because I just felt like I was being berated for using that term. I didn't really label myself before then. So I was offered sign language books from the library there at the state office, and I came away feeling like their office was focused more on somebody who was part of Deaf culture, even though I did get some good information. That was my initial impression of the Minnesota, Deaf Hard of Hearing Services Division. 

I really didn't go back very much or consult with them. I didn't really have any issues in my job search, which Duluth was very economically depressed when I moved here, so there just weren't a lot of jobs. And I finally gave up my job search after a couple of years. And then the next time that I went to the same office, it was actually my political party who contacted them. I had volunteered to be a delegate at the local convention that year. And they had requested a remote CART provider. The remote CART provider, after asking me questions about the convention and what went on because I had been a delegate previously, she recommended to the organizers that remote CART wasn't the best option. It would be better to have an onsite provider. So they contacted that same office and that same director. And she told them that they probably weren't going to get an onsite CART person because it was March and because of the NCAA basketball tournament and there were only 200 captioners in the United States, so we probably weren't going to find an onsite CART provider.

Well, by that time I had been a captioning advocate for almost a decade and I knew better. I knew it was more in the thousands. There are way more than 200 captioners in the United States. She also recommended InnoCaptions as a speech to text option. I didn't catch it at first, but then later on I realized that's against the FCC rules and actually against InnoCaption's own rules. You Can't be in the same location as --

The two parties can't be in the same location, so that was against FCC rules. I began to feel like my Deaf Hard of Hearing Services Division office here locally doesn't really understand my needs. If they don't know some basic things about captioning and the speech to text captions, then how tuned in are they to hard of hearing needs? So that was the beginning of my experience, and I wish it would've been more positive. Anyway, I'll let somebody else talk and give their side of things and their experience. 

Julia Stepp: Truth is, at a conference when people say, "Oh, just use a speech to text app" or "just use speech to text captioning," that's almost as... Honestly, you're better off getting remote live people who may understand a little better because it's just in a conference setting, you've got to have... A live captioner can just capture so much more. I think I've said that before. And yes, FCC rules are... It's a telephone, right? So if a hearing person is calling another person, you're not sitting in the same room calling each other. So I always equate that rule as how the FCC works. Chelle, what are some of your thoughts and experiences? 
Michele Linder: I'll just respond to that. The local organizer, the office actually sold the organizers on using speech to text. And I said, "No, that will not work. I know it won't work." And then they said, "Well, I'm sitting here with the outreach officer and we're using at my kitchen table and it works just fine." And I said, "That's at your kitchen table in a quiet room. I know. I've used it. It will not work." And so I went back to the organizer and said, "You need to get that remote CART person back because I cannot do this with the speech to text app or anything like that. It will not work." That's part of it. People don't believe that you know what you need. And somebody won't know what they need. A lot of hard of hearing have no clue what they need, but I did. And so I got the remote CART person back. But if they had planned ahead, onsite would've been a better option, which is what I requested. 

Chelle Wyatt: Okay. This is Chelle now. And my head swirls with many thoughts and many things. First I want to say that state services need to learn how to meet the hard of hearing where they are. When they offer sign language, that's not a now fix. They need something right now to help them with their life. Okay? It takes years to learn sign language. And I tried for years, took several classes. And I get by, but I never really became completely fluent. That's because nobody else in my life uses sign language. It was only at work. None of my family, one of my friends did or does, but that's it. I'm not around people enough to become fluent, and that's what it takes. I've seen a lot of hard of hearing people take the sign language classes that we have at the state center, and we learn helpful signs, but I'd tell you after about four of them, they realize for the most part their family's not going to learn it. A few do, and that's awesome. I've probably only known two people who've done that out of hundreds, okay? 

So I would like to have state services meet people where they are, and have answers for the hard of hearing where they are right now to get them by in situations. I first went to vocational rehab, I think in 2009 because I was struggling with trying to keep my hair dressing job. Couldn't hear. I would've done anything. I mean, I had planned to be a hairdresser until I was 80 years old, so I would've done anything. And so the vocational rehab guy, he listened to me, he did talk, but he didn't seem to understand me at all. At the end of it, he goes, "But you can still hear." I'm like, "But I can't hear what I want to hear. How do I hear what I want to hear? How do I keep my clients? How do I talk on the phone?" This is before caption phones came out. So I was like, "I'm losing everything. I'm losing my whole means of life, what I thought I would be doing forever. And all you can say is, 'you can still hear, I'm sure you'll work it out'?" I quit. I pretty much lost hope. Stopped doing hair.
 
So that was the first one. And the second one was when... Okay. I worked at the State Deaf and Hard of Hearing Services. And at first I was an assistant, hard of hearing assistant. First in the whole United States to have a whole program all over the United States--  all over Utah for assistants to go out and help hard of hearing people. It was great. I loved that job. I learned as much as I did teaching people, teaching classes and presentations. I really enjoyed the job so much that after five years I became the hard of hearing specialist. I was the first hard of hearing specialist, I think, ever not to use sign language. They got rid of that requirement because they knew that most hard of hearing people don't sign. And they realized that I represent most of the hard of hearing, so that was a good thing. 

I had to start learning sign language a little bit more after that. I had to promise to be more involved with the deaf community. But here's my problem with that. My first staff meeting as a hard of hearing assistant, not long after I joined, I got invited to a staff meeting and they had voice interpreters. I don't think they had CART at that time. No, they didn't, Julia. Julia would know. So they had voice interpreters and they were voicing for me, nobody else in there, so that was nice. They at least did that. But the whole topic of the meeting was how nobody should be using their voice in the deaf center. There should be no voice. Everybody should be using sign language. I was terrified. That was not a representation of me. And I'm sitting in the back wondering how to escape and thinking, I never want to be with these people again in this room. If I don't have a voice at the Deaf and Hard of Hearing Center, what's the point? 
So I took my focus away from the Deaf and worked on the hard of hearing. I had the hard of hearing program, loved what I did, so I just shifted away. But when I come on full time, I had to shift back. But I still found the same sort of attitude of feeling less than because I didn't sign, but I represented my community well. I brought up attendance a whole bunch and brought hard of hearing people in. I could have hard of hearing people walk into my office and give them help now because I knew about speech to text and accommodations and strategies and how to help their hearing people understand hearing loss. And so I could give them help now. And that's what I would like to ask other states to do. Make sure the hard of hearing are fairly represented. We are misunderstood and underserved, truly.
 
So if I could bring up attendance, over the deaf attendance, the last year that I worked, I know it's possible to bring in more hard of hearing people and reach more people. And the more people you have coming, the better. And more hard of hearing people need help. I've had to explain to several of our staff that were hearing and fluent in sign, and Deaf staff, how hearing loss worked. They had no clue. Most of them had the idea like that first vocational rehab guy. "Well, you can hear." But they don't realize we're missing certain sounds in speech. They don't realize we hear some things and not other things. A lot of them think we just have a lower hearing level and it's straight across the audiogram. "So just give them amplification, that'll work." And that's not the answer. 

Julia Stepp: You gave me some thoughts here. So Utah is a little different than most states, I think, than all other states because we do have a community center that hosts classes for hard of hearing and for deaf and for hearing people. All sorts of different classes. And Chelle did amazing work at not only upping the classes in attendance at the center, at the senior centers when COVID hit, putting it online and bumps and bruises and having the ability for people to have some type of way to communicate with their community. But some thought processes go through my head because if I'm a state agency looking at this, this is great for Utah, but what do I do for my state agency? And some thoughts go to my head. Do you have a paper? Do you have a list of speech to text apps that somebody... I'm brand new to hearing loss. I walk into my voc rehab. I'm in tears. I'm about to lose my job. I don't know how to communicate. Does that voc rehab counselor have all the things that can possibly be used?
 
First off, speech to text, cell phone captioning, landline captioning. If I work in a center where they have special phone lines where you can only use them inside your offices, who do I contact and have that company contact? Do I have all of that, number one, to help, and CART. And list how to get ahold of a CART provider and supply all of that. But also, do I know about the social networks? SayWhatClub. Do I have a local hearing loss association chapter that I can say, "Here's a group with hearing loss" that we can guide them to. "Here's Hearing Loss LIVE! They might be able to help you navigate some of this stuff so that you know what may or may not come next." I would really like to see state agencies have a list. If you don't offer classes, do you know where to send this person new to hearing loss to classes in your state, online?

Another thing goes through my head. I know a lot of... Well, I know here in Utah, they have some Deaf culture voc rehab counselors, which I think is so awesome because you understand the culture, you're able to communicate with the client in their culture and be able to educate the business. How do we make a hearing loss Voc Rehab/DWS culture training to understand better? How do we get out there and train those counselors who may just be dealing with a new hearing loss, I guess? I would love to see a workshop where we can get with state agencies to make them understand the difference. Those are some of my thoughts. Michele?
 
Michele Linder: Probably the bright spot in my using state services in 2020, I decided to look for a job again, and I was hoping to get something in the advocacy field. I would've loved to apply to the Deaf Hard of Hearing Services Division in Minnesota, but because I'm not fluent in sign language, they wouldn't even consider me, so I didn't apply. But I was paired with a placement coordinator from vocational rehab. And our first meeting in his office, he asked me if I needed a sign language interpreter. And so I explained that I'm a lip reader and what I needed from him on that front. And I used my speech to text app on my phone, which he was really interested in. I talked to him about how vast the hard of hearing community is. He had no idea that the majority of people with hearing loss were not part of Deaf culture. 
And what was really cool about that meeting was he wasn't okay with the fact that he had no idea what I needed. He had had clients who were part of Deaf culture. He knew about sign language and their needs, and that's fabulous. We want Deaf Hard of Hearing Services Division offices to know about anyone's needs because we're a really diverse group, but what came out of that meeting and my educating my vocational rehab guy was that he suggested that I submit a proposal for a workshop at the Health and Human Services Conference coming up later in that year and talk about how there's not one size that fits all. And I did that and they accepted my proposal and I gave that workshop. And I just think a lot of people are under the misconception that we're all alike. 

We all need the same thing. There's a huge difference between what somebody who is hard of hearing needs and what somebody who is part of Deaf culture needs. And not to take away from each other, but just for people who work in those state agency jobs to be knowledgeable about it. So there's a huge need for training. And I have to give credit to my vocational rehab guy because he said, "If I don't know about this, then my coworkers don't know about this." So that was a positive to come out of that, and I wish more people would view those kind of situations as a positive.

Chelle Wyatt: Okay, this is Chelle again. I do want to say real quick that even though I was heartbroken losing my job with hair dressing because really I knew from the time I was 13 I wanted to be a hairdresser. And so to suddenly lose it in my forties, I was just devastated due to hearing loss. And it took a little bit of a healing period and attending HLAA chapter meetings and the state classes that Utah offered for me to finally rise above and learn the new strategies and self-advocacy needed to be successful with hearing loss. 
 So I really don't regret losing my job as a hairdresser because actually I really love what I do now. I love it when I can help people understand hearing loss, whether they're hearing or hard of hearing. I like helping them get that aha moment. Just to go on a little bit further, it's not just technology and accommodations. We also have to learn new strategies. We have to learn self-advocacy. So it doesn't just stop with a list of paper that says here's this. It needs that, you need that, hearing aid hub, assisted listening helps, CART helps, but my God, we need to learn how to self advocate. We need to stand up and say, "This is what I need." And help people understand that.
 
Julia Stepp: This is Julia. That's a really good point, Chelle. I know we talked about it in other podcasts, that there's a fear and maybe it stems from old thought process on hearing loss and culture. But number one, if you're seeking services, kudos to you because you're in that first step of self-advocacy. But yes, I think agencies need to know and employers need to know. That's a big step for somebody with a hearing loss to even get that far. I know there's some rules around what you can and can't say, but that's when you can reach out and say, "What does that look like for you?" And not say, "Oh, well, go learn sign language or do you know sign language?" And that's not a dis on sign language because I love sign language. I can read it more than I can speak it. I'll say it that way. Most of my foreign languages, I can understand it more than I can talk it. But knowing how to help them find themselves because that's the other part. You don't know how much self-advocacy. Man, the work you guys have to do for yourselves is astronomical.

I see it, not every day, but 20 years of experience of watching how somebody has to continually say, "This is not what I need for my hearing loss. This is what I need for my hearing loss," whatever that looks like. And being forced because you can, for whatever reason, say, "No, this is what I'm going to give you." It makes you wonder, employees maybe don't self advocate because they're being told what they can and can't do and they think, "Okay, this is all I can get." And you have to keep pushing and pushing, and how tiring that is. So if it can just even be one person that takes a minute longer and says, "I need to learn more so I can teach others what they can do for those with a hearing loss, just to take some of the burden off." Mama bear comes out in me sometimes and I want to grab people by the face and say, "You're not doing this right. You're not doing right by the person with the hearing loss." Michele? 
Michele Linder: I've been with the SayWhatClub for almost 15 years now. And responding to the new people who come, they're asking the exact same questions. Nobody tells you how to live with hearing loss. You get sent to an audiologist, fitted with hearing aids. Some audiologists might give more information, but a lot of them don't. And of course I'm talking about my experience, which I don't even interact with audiologists that much because I'm profound. I don't have enough hearing to amplify. So hopefully things have changed. But if I'm looking at the new people who I talk to in the various forums about hearing loss, who are asking questions, that seems so elementary to me because I've been doing captioning advocacy and advocating for people with hearing loss for a long time now, and people are asking those same basic questions.

So they're still not being reached. They still don't know about state agencies. They still don't know about CART. It almost sometimes seems overwhelming about how we can actually all come together and reach people who don't know anything. That's the thing about my vocational rehab experience because I knew what was available. Then I could actually help the person I was meeting with and educate them. But what if I were one of the people who just knew nothing and just didn't know where to turn? And that person wouldn't know how to counsel me or advise me to get help. And so I really feel for all the people who aren't knowledgeable about what their needs are and the accommodations that are available to them. So it's a big area that needs some great improvement.
 
Chelle Wyatt: This is Chelle again. So Utah has a very unique hard of hearing program. And in several ways I feel lucky that I moved here from Arizona. Not that they don't, I just didn't know anything back there and I didn't live in the city anyway. I was hours away from it. So when I moved here, I was in the city in Salt Lake, 15 minute drive to the state agency office. So I was pretty lucky that I fell into it and that I knew how to look for support groups at the very least.

So the hard of hearing program here in Utah has been very successful, I think. It has helped many people. The classes teach people how to be with hearing loss. So the opportunity is there for other people to reach more hard of hearing people, people who knew that very, very much. The people with hearing loss are lost. And like Michele said, it would be great if we could all work together and point each other out as resources. Bring them in. State agencies, bring them in. Audiologists, please show them support groups or people like us who can have classes and mentor them to be more successful with hearing loss. You have that opportunity. Everybody has that opportunity. And so many people are lost. Wow, that breaks my heart. And that's why I'm here. I don't want them to be lost. I want them to know their way. 
Julia Stepp:
I think of a comment made. Audiologists sometimes say, "Well, they just want a hearing aid from me." But have you asked? Did you ask if that's all they need? Because maybe they don't. Maybe they do have problems and they just don't want to tell their audiologist or don't know that they can tell their audiologist. And even then I think primary care should know more about hearing loss. Gosh, that puts me down a whole new route that has nothing to do with state agencies. As a state agency, I really... First off, people with a hearing loss, do you know what your legislation has for your state agency? I do think that's important that you know and understand and if it follows what you need with your hearing loss. Who's employed? Who is your hearing loss specialist? Who is your hard of hearing specialist? What services they offer and is it because of legislation or is it because the state really just doesn't know any better? And how can you help educate that area? Because that's very important, I think, for state services. We all know each state has their own rules and set up for each of that. Does it fall under health and human services? Here in the State of Utah, our services fall under the governor's office. So there may be a chain there that you can help make understand better your needs.

I really, really, really, really want state services to look at getting a presentation. I'd love it to be from us here at Hearing Loss LIVE! But I'm open to whatever your legislation allows. State agencies, you really need to get some training and understanding why hearing loss is different for each person. There's a lot of things that are alike, but the experiences, what they can hear, the level of loss... And I want it clear... I again have nothing against sign language, but it is not the now fix, just like Chelle said. I am not going to take a day of sign language and be able to go out in the hearing community and meet communication standards. My boss isn't going to know sign language most likely. My coworkers aren't going to know it. My family doesn't know it.
 
We all understand gestures kind of sort of. But please, please learn the tools that are more appropriate and can be used in everyday strategies for somebody with a hearing loss. And I say new all the time, but the truth is hearing loss changes, right? And it can be overnight. I remember a client at the Sanderson Center who was hearing, woke up, heard the phone ring, answered it, couldn't hear anything. She thought the phone line had cut out and died. She lost her hearing in that split of a second and was profoundly deaf, profound hearing loss from that day forward. And she shares a lot of other struggles that happened with that because people didn't understand it, not even her doctors or state agencies. So it took finding a self-help group to sit down and say, "Oh, this is a weird loss, but I'm not alone." No matter what it looks like. Very, very important. I think state agencies need to research and know better. Michele? 
Michele Linder: Michele here. One of the last things I want to mention is the state agencies need to pay attention to their websites and their physical offices. Over the years, I've searched different state agencies for someone new to hearing loss, who are looking for help. And so I research the state that they're from and I send them information and I see the different state websites and deaf culture and sign language is front and center. And that's not a bad thing. But the hard of hearing needs and our accommodation should also be front and center. A lot of times you have to go through three or four layers before you ever see anything about CART. And CART is exactly same for the hard of hearing as sign language interpretation for the deaf. And I think the sooner that people clear up that misconception that everybody who has a hearing loss uses sign language, the better. 
I'll give you an example. I guess I don't really even understand why state agencies already don't think outside the box, and know how diverse hearing loss is. Why would you not have every accommodation that you could have? So, a while back, several years ago I was visiting Chelle and I was hanging out at the Sanderson Center and we were getting ready to leave. It was the end of the day and a client came in. So Chelle had to go back to her office and meet with the client. So I sat out in the reception area and watching the news on the TV monitor. And it was the Moth news, which is the sign language news, the news in sign language. And there were no captioning on it. And so I went to the receptionist and asked, "Could you turn on the captioning?" She said, "Well, there isn't any captioning. It's just sign language." And those are the kind of things that when people who are hard of hearing walk into these offices or they look at the websites and they don't see anything there for them, they get the misconception that, "Oh, this must be just an agency that helps people who are part of deaf culture and use sign language for communication."
 
 
And so we're giving the hard of hearing the wrong idea about what state agencies are. They're called Deaf Hard of Hearing Services Divisions or whatever your state calls it. But a lot of times we don't see the hard of hearing when we look at it at that first look, and we walk away because we don't think it's for us. That needs to change. And I have seen some improvement on state websites, but some of them still are very focused on the Deaf and sign language. And again, that's not a bad thing, but we all need to be presented with information that we need. So anyway, that's the other thing I wanted to mention about that. Again, requiring people who work for state agencies to be fluent in sign language, you're weeding out some of the most qualified people to help people who are hard of hearing and can really teach them about accommodations that are available to them. 
Chelle Wyatt: This is Chelle again. It's like my first staff meeting where they said, "No voice allowed." It's very unwelcoming and it's a scary place because we don't feel a part of the hearing world either. And suddenly I was rejected from being involved with the Deaf world too. So it does need to be equal. If it's the Deaf and Hard of Hearing Services, it needs to be more equal. It needs to show that we have an opportunity to participate there as well. So I think we do need to ask to be fairly represented. If you're listening to us and you're just a average citizen with hearing loss, contact the State Deaf and Hard of Hearing Center and ask to be fairly represented or at least get to know the hard of hearing specialist. And if you're hiring for a hard of hearing specialist, make sure it's the person who can best reach the community because they can connect, having had a hearing loss themselves or at least somebody in the family who's had hearing loss. I found both people can represent hearing loss fairly well.
 
But get somebody who's in connection with the community, that they're involved in support groups and attending conventions and stuff like that. Make sure your hard of hearing specialist is connected into the hard of hearing community. And one last thing is know the other misconception. Michele talks about the ASL misconception for the hard of hearing. So yeah, most of us don't know sign and we're not going to learn it either because people in our lives won't learn it. But also the other misconception is, "Just give them amplification, and that works." I mean, look at Michele. Michele really can't use amplification. She does a little bit. She tries it, but it's not going to be the way for her to communicate. I get amplification. I need it, but too much amplification just distorts everything for me. Background noise distorts speech. So it needs to be amplification for some. It's not for all. And just make sure we get the other things to go with it. That's important.

Julia Stepp: Thank you. Any other thoughts before I close it up? No? Okay. Thank you for joining us. We hope you'll share this with your social media and maybe your state agency. We look forward to seeing you next week. We're going to talk jobs and interviews. We'll leave that as a surprise for you. Anyways, thank you for joining us. Share us. See you next week.
 

Next week, Hearing Loss LIVE! talks to you about job interviewing.