Advocacy

Shari Eberts, a hearing loss advocate in the front lines, has been working hard to get video conferencing platforms to provide free captioning for people with nearing loss. Google and Microsoft have done so. Please sign this petition to get Zoom to provide captions for free as well. Our goal is to reach 50,000 signatures and we need more support. You can read more and sign the petition at: http://chng.it/BxBmLGZbSt.

Thanks to Terri Charles for alerting us to the following article that was published in The Hearing Journal on April 10.  I know that some of you were able to watch the webinar.

By Alexis Guerra

As hospitals accommodate the increasing number of patients with COVID-19, people who are hard of hearing or deaf are faced with critical challenges in properly communicating with doctors and nurses amid protective masks and physical distancing guidelines. To address this and other related concerns, Chad Ruffin, MD, and Tina Childress, AuD, CCC-A, organized a webinar on April 6.

One of the challenges Ruffin spoke about is the increased restrictions on visitors, making it likely that people who are hard of hearing or deaf will be on their own while at the hospital. Making matters more severe, nurses and doctors will also be wearing masks, eliminating visual cues. Clear masks, according to Ruffin, do not protect health care workers against COVID-19 since they are not comparable to N95 masks.

He also warns that the environment will most likely be noisy and overwhelmed by the sound of the medical equipment and the surplus of patients. However, those who are deaf or hard of hearing should still feel free to request a different nurse or ask to see the accessibility coordinator by speaking to the charge nurse. If care has been rationed or denied altogether, the patient should request an ethics consult and the nursing supervisor.

“A lot of the misconception is that when you go to a hospital for COVID-19, you’re going into a normal hospital setting and that the hospitals will have all the normal equipment and accommodations to provide you the communication tools that you need, and I don’t think this is the right assumption,” said Ruffin. “You are going to be entering a medical disaster scene at some hospitals.”

Despite the challenges that hard of hearing or deaf patients will face during COVID-19, Ruffin points out that a positive effect of the pandemic is the broadening of care with the use of telemedicine. Those who could not be reached prior can now have the opportunity to make appointments with doctors across the country.

If you are someone who is hard of hearing or deaf, Ruffin and Childress suggest doing the following:

• Talk to your Primary Doctor. If you need to go to the Emergency Department (ED), call your primary doctor first so they may help facilitate the process and also give the ED notice of your needs. They may also be able to solve any issues you may have through a telehealth appointment if it isn’t an issue needing immediate attention.
• Prepare with your Family. Develop a communication strategy with friends and family before going to the hospital. Coordinate who will be the point of contact while you are at the hospital.
• Create a Hospital Kit. When preparing to go to the hospital, create your own hospital kit with signage to hang above your hospital bed so others can be made aware of your disability.
• Use Smartphone Apps. Practice using Speech-to-Text apps, such as Live Transcribe, Otter and Ava at home before going to the hospital. Apps such as InnoCaption and Hamilton CapTel are useful for creating captions for telephone or video calls. Make sure to write down login information if an app requires a password.
• Keep a Record. Bring a complete list of medications, medical history, contact numbers to the hospital.  A smartphone, chargers, hearing equipment and headbands should also be brought to the hospital with you.
• Low-tech Solutions. A pad of paper and a pen or a boogie board are also useful communication tools. Bring these to the hospital as a backup tool to your smartphone or hearing device. It’s also important to sanitize any tools that you are bringing with you to the hospital.
• Prepare for Rounds. Learn what time rounds occur during the daily routine of the hospital so your advocate can phone in. This is so they can assist with coordinating your care while in the hospital and after.

A recording of the webinar is available online. A similar webinar recording geared toward people who primarily communicate in ASL can also be viewed online.

 

From: Hanigan, Ami (MCD) <ami.h…@state.ma.us>
Date: Wed, Mar 11, 2020 at 11:43 AM
Subject: Cancelled: Deaf and Hard of Hearing Constituents’ Day: March 30th
To: MCDHH Statewide Advisory Council and MCDHH Community Members

Unfortunately, due to growing concerns regarding the Coronavirus (COVID-19) the Deaf and Hard of Hearing Day on March 30  will be cancelled.

MCDHH SAC members will be working to identify a rescheduled date for the event. This will be communicated as soon as determined.

Thank you all for your understanding in this situation.

Thank you,

Hana Hanigan
Administrative Assistant to the Commissioner
MA Commission for the Deaf and Hard of Hearing
600 Washington Street
Boston, MA 02111

Voice: 617-740-1611
Ami.Hanigan@MassMail.State.MA.US
Pager: 617-939-8556

Betsy Ireland writes on hearatboston@googlegroups.com:

Please save Monday, March 30th from 10am – noon for Deaf and Hard of Hearing Day at the State House!

Nominations for Outstanding Advocate, Organization, Service Provider, Legislator and Young Advocate are open. Please send your nominations to Hana Hanigan (contact info at the bottom of each form) by January 31st. This is one of my favorite parts of the day, to recognize great contributions in our community.

Betsy Ireland

Chair, Statewide Advisory Council to MCDHH

Attachments:

Sue Schy writes on hearatboston@googlegroups.com:

Please respond to this petition and survey on live television captioning by September 13th.  Thanks.

———- Forwarded message ———
From: Francine Stieglitz <fstiegli@bu.edu>
Date: Tue, Aug 27, 2019 at 8:42 AM
Subject: Improve the Quality of Live TV Captions –Comments Needed by September 13 !!
To: Francine Stieglitz <fstiegli@bu.edu>

Deaf and Hard of Hearing Consumer Groups and Researchers Call on the FCC to Improve the Quality of Live Captions

On July 31, Telecommunications for the Deaf and Hard of Hearing, Inc. (TDI), the National Association of the Deaf (NAD), the Hearing Loss Association of America (HLAA), the Association of Late-Deafened Adults (ALDA), the Cerebral Palsy and Deaf Organization (CPADO), Deaf Seniors of America (DSA), the Deaf/Hard of Hearing Technology Rehabilitation Engineering Research Center (DHH-RERC), the Twenty-First Century Captioning Disability and Rehabilitation Research Project (Captioning DRRP), the Rehabilitation Engineering Research Center on Universal Interface & Information Technology Access (IT-RERC), and the National Technical Institute for the Deaf petitioned the Federal Communications Commission (FCC) to address long-standing quality problems with captioning for live television programming. The petition was supported by the American Association of the DeafBlind (AADB).

As the petition explains, consumers routinely report serious problems with the accuracy, timing, completeness, and placement of captions on live programming, including local news, sports, and weather. The petition asks the FCC to build on its existing standards for the quality of captions by setting metrics for acceptable quality of live captions. The petition also urges the FCC to provide guidance for new captioning systems that use automatic speech recognition, which have the potential to provide captions with improved timing and lower cost but also routinely cause significant accuracy problems. Consumer groups and researchers also will be submitting additional feedback to the FCC, including an analysis of hundreds of consumer responses gathered by HLAA in a recent survey.

We need your help! The FCC has asked for comments from the public about the petition, and it’s important that they hear from deaf and hard of hearing consumers. If you’ve had experiences with captions for live TV programming that you’re willing to share with the FCC, you can do so online.

Submit your comments to the FCC by September 13:

Questions?  Contact advocacy@hearingloss.org

 

Coming to Terms with Your Hearing Loss?  How to Achieve Your Best Hearing Experience.

Pat Dobbs is a Hearing Loss Consultant and Advocate on a mission.  Currently in her second year of Gallaudet University’s Peer Mentoring Program, she maintains a website, Hearing Loss Revolution, that offers stories of hope, information about technology and communication strategies, and tips for healthy adaptation to hearing difficulties.

Recently,  Pat successfully completed a local pilot of her new workshop. She’ll offer a free on-line version of the workshop, and the format will be a Live Group Chat, i.e., WRITTEN TEXT ONLY (and, therefore, accessible). Participants will  need a computer, wi-fi access and a little computer knowledge.

Participants will be asked to offer feedback on the workshop upon its completion.

Tuesday evenings 7:30 to 9:00 EST:

• March 28
• April 4
• April 11
• April 18

 If you’re interested in participating, please contact Pat at pat@coachdobbs.com.

from HearingLossEvolution: [2020: Previously the  website was www.hearinglossrevolution.com]

“I’ve had a hearing loss since I was 20. Through the years my hearing declined so much that in 2010 I received a cochlear implant. Today I hear in the average range, ‘Yahoo!’

“Through the years I was embarrassed about my hearing loss, and I seldom told people about it. If I didn’t hear what someone said, I was much more likely to “fake it” than ask them to speak to me in such a way that I could hear them. Consequently, speaking to people became difficult and painful. I dropped out of more and more social situations, became isolated, and depressed.

“But at one point, I stopped and asked myself, “Why don’t I just tell people I have a hearing loss and let them know how they can talk to me so I could hear them better?” After all, people talk to me so that I hear them, not so that I give the right facial expressions.

“I realized that I needed to change my thinking and be clear that there is nothing to be embarrassed about. Out of these thoughts came the Hearing Loss Revolution and the Nine Guiding Principles.”

Learn more about Pat Dobbs‘ hearing loss journey on the Hearing Loss Revolution website.

[NOTE:  September, 2020 – Hearing Loss Revolution has changed its domain name to www.hearinglossevolution.com]

 

 

 

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from Betsy McCarthy, Chair of the Massachusetts Legislative Task Force:

The Winter, 2017 issue of Hearing Health  [link no longer available, October, 2020],  an online publication of the Hearing Health Foundation in New York City, is devoted to information about successful management of hearing loss in the workplace.