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Communicating with Hospital & Medical Staff deaf Education Hard of Hearing Hearing Loss Mental Health & Hearing Loss

Mental Health Myths in Treating Hard of Hearing Clients: With Gloria Pelletier

Our guest this week is Gloria Pelletier, a Licensed Clinical Social Worker, who has become a great connection for us here at Hearing Loss LIVE! She brings a wealth of understanding about how hearing loss and mental health have a long way to grow together. Watch for our ongoing series with Gloria where we will unpack more misconceptions as it correlates to hearing loss and mental health diagnoses.

Change the Therapeutic Milieux
Gloria Pelletier

Gloria: With my last, large hearing drop I no longer could communicate effectively. I could speak but I couldn’t hear what others were telling me. I could still read lips, sort of, but not enough to be able to understand communication.

I decided to go to a mental health professional to learn how to deal with my drastic hearing loss. Unfortunately, what I found was that the experience of losing a sense and the resulting consequences was not well understood in the mental health community. I was given many different diagnoses in an attempt to define my experiences. None of which were accurate. I began to ask my community circle if they had experienced the same phenomena. I did a small survey of those who were doing therapy and no one made any accommodations for hearing loss or understood that there were some adaptations that could look like or were similar to other DSM ( Diagnostic and Statistical Manual of Mental Disorders) criteria.

After a quick literature search it became apparent that this was a common occurrence for Deaf individuals. I was talking to Chelle about the misperceptions in the mental health field and this is how the podcast was born. It is imperative that Hard of Hearing (HoH), deaf, late deafened, Deaf, etc., are understood within the mental health community so that we can get the appropriate treatment.

Hearing loss and the consequences of losing a sense is well understood medically. What is lacking is understanding of how that impacts the HoH emotionally. What does that look like in everyday living?

With the help of Vocational Rehabilitation we explored the technology available now which would assist me in continuing to do therapy. With technology I can communicate with the hearing, and HoH community effectively. I can still do what I love.

My goal is to increase the knowledge within the therapeutic community’s understanding of hearing loss, the consequences and how best serve those with hearing loss. To deconstruct the myths and misconceptions that create confusion for both the practitioner and the client.

I lost my hearing, I didn’t lose my abilities. I have the same abilities I had before, except hearing. There are ways to live with hearing loss that will augment my skills and understanding. Let’s work together to find those, make them known and assist others in knowing hearing loss can be an adjustment not a disease.

Julia: In our Podcast with Gloria you will hear the acronym “DSM.” This stands for Diagnostic and Statistical Manual of Mental Disorders. The American Psychiatric Association is a great place to learn more about DSM and its role in patient diagnosis. 

I don’t know about y’all, but as a kid “mental health” was a dirty word. Almost as dirty as the word “hearing loss.” Mental illness meant you couldn’t perform a job the way a normal person could. Hearing loss meant you couldn’t perform a job the way a hearing person could. Mental illness meant someone unstable who might say something inappropriate. Hearing loss meant someone unstable who might say something inappropriate. 

People around the country are working hard to change the stigma of mental health disabilities and therapy. Thank goodness. But the work is still in its infancy in my opinion. Hearing Loss LIVE! is working to change the stigma of hearing loss disabilities. Thank goodness. But here too the work is still in its infancy.

All patient intake forms should have a section related to hearing loss. 

  • Have you been diagnosed with hearing loss?
  • Has your hearing changed recently?

And so on.

Chelle: With hindsight and new awareness, I’m sure I had hidden hearing loss as a teenager. 

  • Though I could hear in the classroom, I couldn’t hear in the noisy hallways between classes. 
  • I hated being in the backseat of cars because I couldn’t understand what people were saying. I had to lean forward and hang my head in the front seat to hear. 
  • People couldn’t talk to me from another room without a repeat. 

Tinnitus at 18 was suggestive that I might have hearing loss but the audiologist said my hearing was within the normal range. Five years later, I was wearing hearing aids with a more obvious hearing loss.  

Chelle, mislabeled as a typical defiant teenager

Instead of suspecting hearing loss, I was a “typical teenager saying huh” all the time. Or a defiant teenager for not paying attention and mirroring anger with people who were impatient repeating. Years later, I found out while attending a high school reunion people thought I was stuck up, or antisocial.  

These days there are hearing tests for “speech in noise”. When I was a teenager, that wasn’t an option so we just didn’t know. Hearing loss is more prevalent these days. One in five teenagers experience some sort of hearing loss. In a class of 30 kids, that is 6 who may experience hearing loss. If a teacher has five classes a day, that’s 30 kids a day with a possible hearing loss.  

Gloria and I discussed this a couple of months ago. I remember the silence as we both processed this new awareness. There aren’t regular hearing screenings in schools so how long does hearing loss go undiagnosed? How many teenagers are labeled as antisocial? Defiant? Maybe even ADD for not paying attention. Are we checking their hearing?

Michele: I recently stumbled onto the empowEAR Audiology Podcast hosted by Carrie Spangler, Au.D, CCC-A, who has hearing loss herself—she was implanted with a cochlear implant in November of 2019. NOTE: Transcripts are available, however, the ASR (automatic speech recognition) captioning isn’t corrected. You know I’m going to contact them about that.

In episode #40, Dr. Spangler’s guest is Matt Hay, a 45 year old man who began losing his hearing his sophomore year of college. He was diagnosed with neurofibromatosis, type 2 (NF2), and underwent an auditory brainstem implant (ABI – 12 electrodes connected directly to the brainstem in the area that processes sound) just after it was FDA approved in 2000. Matt woke up from the surgery with facial paralysis, he couldn’t walk, and had double vision, not to mention all the work it was going to take to learn to hear again with the ABI.

In reading the entire podcast, what struck me most was that Matt had all kinds of physical rehab and therapy, but not much on the hearing loss side that addressed the emotional and mental struggle we all go through. He talks about the things it took too long to learn—self advocacy, realizing you can question professionals, because they don’t always know best or have answers, and the fact that nobody ever came to him and said, “Hey, we have this training that can help you.”   

Matt found himself explaining his frustration to everyone, even his doctors: ”And I remember being so frustrated and saying like, you just don’t get it. You don’t understand why this is hard, why it’s exhausting, why it’s lonely, why [I] can be surrounded by this support and still feel totally on my own and alone.”

Unfortunately, doctors, therapists, and the other medical professionals who treat us, have not been trained to understand hearing loss.

During a follow-up hospital appointment with CART/Textual English Interpreting—I requested CART for the first time for a procedure I had done last week—the Nurse Practitioner was amazed at how well CART worked. She was very curious and asked a lot of questions about it. One thing I made sure to tell her is that without an effective way to communicate, people with hearing loss can exhibit behavior that is misinterpreted as mental health or cognitive issues.

Why the Hard of Hearing might be misdiagnosed or mislabeled:
  • Staring at a speaker’s lips while lip/speech reading can come across as intimidating.
  • The intense concentration it takes to understand speech is often misinterpreted as anger.
  • Needing more time to process information, mispronouncing words, or the confusion resulting from ‘bluffing’ can be misinterpreted as a cognitive disorder or learning disability.
  • Poor voice modulation leads to a client or patient being flagged as depressed or having a health disorder.

Can you think of others?

We are so happy to support Gloria as she works to increase the therapeutic community’s understanding of hearing loss, and to deconstruct the myths and misconceptions that create confusion for both the practitioner and the client.

Watch our companion podcast with Gloria here.

If you liked this topic, try the Emotional Side of Hearing Loss, there are a lot of emotions that take time to process. Meaningful Connections with People is another good one. Gloria is a wonderful addition to our meaningful connections.

If you enjoy our content and find it helpful, please consider donating so that we can reach more people with hearing loss to help them help themselves.

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Accessibility Advocacy Captioning CART (live captioning) Communicating with Hospital & Medical Staff Communication Practices Hard of Hearing Hearing Loss Misconceptions Speech to Text Captions

Hospital Communication for the Hard of Hearing

By Michele Linder

Q: What’s missing in hospital accessibility and language services?

A: CART (Computer Aided Real-Time Transcription or Communication Access Real-Time Translation)/textual language interpretation for the Hard of Hearing! 

Check your hospital’s nondiscrimination policy and/or accessibility/language services information—yes, do it right now so you know—and they likely read similar to mine.

“Essentia Health provides free aids and services to people with disabilities to communicate effectively with us, such as:

  • Qualified sign language interpreters.
  • Written information in other formats (large print, audio, accessible electronic formats, other formats).
  • Provides free language services to people whose primary language is not English, such as: Qualified interpreters.
  • Information written in other languages.”

NOTE: Clicking on the link above you will see that in addition to sign language for the Deaf, I can also get translation in the following world languages: Amharic, Arabic, Bantu, Chinese, Cushite, French, German, Hindi, Hmong, Italian, Japanese, Korean, Laotian, Nepali, Norwegian, Pennsylvania Dutch, Polish, Russian, Serbocroatian, Spanish, Swahili, Tagalog, Telugu, Urdu, and Vietnamese.

However, there is nothing listed for those of us (over 95% of people with hearing loss) who need Speech-to-Text English Interpretation.
✣ ✣ ✣ ✣

Here is another from the prestigious Mayo Clinic in Rochester, Minnesota, where I have received care: 

“Accessibility services at Mayo Clinic in Rochester, Minnesota

Mayo Clinic is committed to making its buildings and services accessible to all.

Accessibility services can be found all across our campus — and they’re always free of charge. Just ask one of the friendly door attendants or patient care staff at any Mayo Clinic building. They’ll make sure you get what you need.”

Yet, as you scroll down the page this what is listed for Hearing-impaired services on the Mayo Clinic’s website: 

“Sign language interpreters are available at no charge to patients. Simply tell the registration staff or appointment scheduler that you’ll need an interpreter.”
✣ ✣ ✣ ✣

THREE IMPORTANT POINTS TO REMEMBER
  1. Over 95% of people with disabling hearing loss use spoken language to communicate. Providing them with sign language interpretation is useless. They need textual language services in their spoken language.
  2. The Americans with Disabilities Act (ADA) recognizes CART, textual language interpretation, as a reasonable accommodation for communication access. It is the equivalent of ASL interpretation, in that it meets the needs of the HoH community in the same way sign language interpretation meets the needs of the Deaf community.
  3. The world has many misconceptions about the HoH community, and many people with hearing loss are unaware of their right to accommodation and lack knowledge of what is available to them for communication access.
ON A PERSONAL LEVEL

I am a good self advocate and communicator. I am also knowledgeable about the accommodations available to me. Here is my take on the ones I’ve used in a hospital setting:

  • Lipreading & Clear Masks: Because my primary mode of communication is lipreading, I know that it doesn’t always work, so relying on clear masks and lipreading for medical appointments isn’t a great solution where important medical information is being relayed or you need to follow instructions. Also, not everyone with hearing loss can lipread.
  • Pen & Paper: Never underestimate the power of writing it down. It’s a great way to communicate for something simple, however, my recent mammography experience is why it is not a good option in many situations. I had told the tech I wouldn’t understand her at all with masks, she should gesture or do whatever was needed to give me direction, and when all else fails she would have to write it down. The tech continually spoke to me. “You’re going to have to write it down,” I responded each time. To which she would begrudgingly grab her pen and paper—clearly frustrated that I couldn’t hear her. It isn’t a wonder HoH people dread medical appointments and often skip them.
  • ASR (automatic speech recognition) apps for smartphones: Definitely a help, but often not accurate due to background noise, distance from speaker, unclear speech, or poor WiFi/cell service. Take my recent ER visit to Highland Hospital in Rochester, New York. I checked in using Otter after asking if the hospital had iPads with speech-to-Text communication. They did not. Once in the treatment area Otter would no longer work (WiFi was likely the issue as we went into the bowels of the hospital) and I brought up the Notes app on my iPhone. No punctuation, capitalization, or speaker designation, and lacking accuracy.
Interpretation Cart in use at Highland Hospital. I have spoken to the hospital’s Social Work Department, and to the CyraCom (the maker of the cart) to advocate for CART/Text Interpretation.
Screen shot of the poor ASR text in my iPhone’s Notes app. NOTE: PA’s words are highlighted.
  • Interpretation Cart: Some hospitals have a cart on wheels with a tablet or iPad attached to the top to provide language services remotely. I was so excited to see that Highland hospital had one! That is, until the Physicians Assistant (PA) brought up the video with a sign language interpreter even after I told her I don’t communicate with sign language. Expectantly, I asked for CART instead, and was told there was no Speech-to-Text option, only sign language and world language translation. HUGE disappointment! I was forced to continue to limp along with the Notes app. I told the PA they really needed to add a CART option since over 95% of people with disabling hearing loss use spoken language and don’t use sign language to communicate. She said, “Your phone app is working just fine,” so I showed her the text of her speech, which had her saying the “F” word. She laughed and said that wasn’t what she said. I didn’t think it was funny.

Wanting to communicate for myself is NOT too much to ask. And, wanting the accommodation that is most effective is not an unreasonable request. If a hospital is willing to provide ASL Interpretation, they should also offer CART/textual language interpretation.

In early May, I had my annual physical and mammogram. It’s colonoscopy time again. Oh Joy! My doctor referred me for a telehealth appointment prior to colonoscopy to discuss some other GI issues I am having, and also put in a request for CART (my mammography experience is why I asked my doctor to request CART in her referral) for the procedure itself. In addition, I have a spot on my hand that my doctor wants biopsied, which means a Dermatology (Derm) appointment.

Turns out getting the Derm appointment and scheduling telehealth with Gastroenterology (Gastro) isn’t so easy, as their departments do their own scheduling. I can’t make appointments with them online like I can with my other doctors. It’s been a month and no one has called, as I was instructed they would, so I stopped in at my clinic closer to home to see if scheduling could give me some help. I was again told, “You have to call them, we can’t schedule those departments.” I’ve tried for weeks, only to reach a recording and being put on hold for over ten minutes and still not getting through. I can’t in good conscience expect an InnoCaption CA (call assistant) to waste their precious time on hold for an indefinite length of time. 

I get the recording every time, no matter what time I call.

So last week I went to the hospital. 

  1. To try to find the point person for scheduling accommodations. My doctor requested CART with the colonoscopy referral. I received this email response from the Gastroenterology (Gastro) Department: “Hello! After speaking with my manager he would like you to bring a visitor with you that can help with communication between nursing staff and yourself. Otherwise if you use sign language we can always bring in an interpreter.” Um, just NO! And, how will I be able to lipread a masked “visitor” any better than masked nursing staff?
  2. I need a timely appointment with Derm.
  3. I need a telehealth appointment with Gastro before my colonoscopy.
  4. I want to speak with a Patient Advocate, a Social Work person, or an Accessibility Officer who can help me get the hospital up to speed on providing CART. 

The Derm appointment was a breeze, but it’s not until November. Sigh…

I had success in getting contact info for the accommodations person, but here is how that went:
Me: Addressing the Guest Services Volunteer (GSV) at the information desk: Hi, I’m a lipreader and that’s impossible to do with masks, so I’m going to bring up a captioning app on my phone so I can read the text of what you say.” 
GSV: He begins talking and signing before my captioning app is enabled: “Blah, blah, blah, blah, blah,”—that quote is for both speaking and signing, because I can’t hear what he’s saying and I don’t know sign language.
Me:I’m looking for someone in charge of scheduling accommodations, an accessibility officer, or a patient advocate.”
GSV: He starts talking and seems perturbed because I’m not watching him talk. He keeps trying to take my attention away from my phone screen with the text of what he’s saying. 
Me: “I can’t look at you while you speak, I need to look at my phone screen to read the captions. No, I don’t need an interpreter, I don’t know sign language, I’m a lipreader.”
GSV: He seems to know just who to call, and does. Once she picks up, he tells her what he assumes I want to talk to her about. He treats me like I’m helpless and have no idea about what I need.
Me: I interrupt, because I’m reading the text of what he is telling her on my phone. “That’s not what I want, I’ve already made the CART request, but I’m having trouble getting the accommodation I requested.”
GSV: He puts the phone on speaker and shoves it toward me to speak with the ASL Interpreter on staff who is the program manager of language services. 
Me: I tell her what I’m trying to do. She responds, “I’m still working on getting CART and what I was told was that it would take a long time to get CART but I’m trying my best to make this accommodation for you.” She continues explaining that getting CART is hard. I tell her it isn’t hard, or any harder than getting an ASL Interpreter, but that if you don’t do it routinely, you need to learn how. I suggest we exchange emails and she agrees that would be best and after we exchange information the call ends. NOTE: The language service manager and I have continued to correspond via email and I sent her the contact information for a CART provider I have used in the past at a political convention who provides medical CART at the Mayo Clinic, Minnesota.
GSV: After the call ends, “So have you done anything with DHHSD (Deaf and Hard of Hearing Services Division) at all? 
Me: “Yes, I have dealt with DHHSD various times, but the local director, who is culturally Deaf, does not have a good understanding of HoH needs, they are more focused on the Deaf community and sign language.” NOTE: I’ve since learned that the director I’ve dealt with in the past has retired and I’m in the process of connecting with her replacement.
GSV: “DHHSD would be the best way to go.”
Me: ”Actually, the hospital should know how to provide any accommodation request without relying on patients to provide their own devices for text. It’s pretty ironic that I’ve shown up several times (pre-Covid) for appointments or tests at the hospital to find an ASL Interpreter waiting when I hadn’t even made an accommodation request. But, when I make a request for the accommodation that meets my communication needs—CART—it seems it’s “TOO HARD” to get it.”

I thanked the GSV for trying to help me and headed to the Gastro department through miles of skyway. To my surprise, I bump into the same GSV near the elevators that will take me to the Gastro Department. He says he’ll meet me there as he rushes a patient away in a wheelchair. 

I approach the Gastro registration desk and begin talking to the woman behind the plexiglass. The GSV rushes in, barges in front of me, interrupts, and starts telling the woman what I need.

Me: “Excuse me, I can communicate for myself. I don’t need a communication go-between,” and take over for myself. I can tell the woman behind the plexiglass is silently cheering me on. She sends me to another woman at a desk and we discuss the telehealth appointment my PCP wants me to have with the Gastro doc before my colonoscopy. The GSV continues to interrupt every time the woman at the desk is busy on her computer, talking when I don’t even have my captioning app enabled and not being patient enough to wait for it to kick in. I tell him, “I really am deaf, I can’t hear anything you are saying behind your mask. It may seem like I can hear because I can talk, but I can’t hear.”
GSV: He continues to try to talk to me while I’m trying to talk to the woman behind the plexiglass.

I’m sure others encounter well-meaning but insensitive people in their medical appointments. Here is what those people need to know about how to communicate with someone who is Hard of Hearing:

  • Listen closely to the person when they are telling you what you need to know about their hearing loss and communication needs. Over 95% of people with disabling hearing loss do not sign, so don’t start signing right off the bat.
  • Assumptions cause offense. Hearing loss is diverse and each person is different. One size does not fit all. If the person doesn’t give you direction on how to communicate with them, ask.
  • Be patient with people who communicate differently and need more processing time.
  • Treat the person with respect. Assuming a person with hearing loss is helpless and uninformed is offensive.
  • A person with hearing loss cannot focus between two conversations going on at once. Wait until they acknowledge you before you start speaking.

Hospital volunteers need sensitivity training.

I’ve been researching and finally found this Interpreters and Translators, Inc. (ITI) blog, Top 5 Video Translation Services in Healthcare that states this truth: 

Access to healthcare for deaf and/or hard-of-hearing people is often overlooked, but it is an enormous issue. The American Journal of Preventive Medicine reports that deaf and/or hard-of-hearing individuals go to the doctor less often and make more trips to the emergency room.

“CART services are also necessary to help organizations remain compliant with the Americans with Disabilities Act. While it is true that an ASL medical interpreter is often used in a healthcare setting, the majority of deaf and/or hard-of-hearing people rely on CART services.”

Symbol for ASL Interpretation on the Interpreters and Translators, Inc. (ITI) website. There is no similar or clearly defined CART symbol on the homepage. You find CART & Text Interpreting in the dropdown menu under “What We Do”.

And yet on their homepage CART & Text Interpreting isn’t highlighted specifically with any recognizable graphic. You have to hover over the “What We Do” tab to find it in the dropdown menu. Many HoH people will not look past the homepage. That’s a big issue for me, CART deserves equal billing with ASL Interpreting on website homepages and anywhere ASL Interpreting appears.

It occurs to me that we need a symbol other than CC for CART. And, maybe Text Interpreting, Speech-to-Text Interpreting, or Textual Language Interpretation are better labels? Does anyone have other suggestions?

Something has to change. The HoH community needs to start a CART movement NOW! CART is the most effective and accurate communication access accommodation, and it is time that hospitals and companies like CyraCom (maker of the Interpretation CART used at Highland Hospital ER) add CART/Text Interpretation to their language service options.

Until CART has equal billing with Sign Language Interpretation everywhere, including hospital and medical facilities, the HoH are going to remain unaware of the communication access accommodations available to them. Expecting the HoH to provide their own devices for captioning apps is not going to cut it, as some may not have a smartphone, and even more will have no knowledge of captioning apps.

Last, I know that healthcare workers would also benefit from iPads or tablets with software for text communication, because I ask. Every time I go to the doctor or hospital, I have a routine that I go though with every medical employee I encounter: “Twenty percent of the population has hearing loss, I bet you get a lot of Hard of Hearing patients and communication is challenging?”

“Yes, we do!”, is always their response.

“Wouldn’t it be great if your hospital provided you with screens for text communication, which is what over 95% of people with hearing loss need for communication access?,” I add.

How can we get this done? It shouldn’t be this hard for the Hard of Hearing to have equal access to communication at the hospital. Their life may depend on it!

We don’t have a companion podcast for this post. If you liked this post, you might like Self Advocacy and Defining the Hard of Hearing.