If you missed our January 2024 HOPE hearing loss online support meeting, here are the notes. Our topics at this meeting included how to advocate for yourself at a restaurant, help for hearing better during telehealth appointments, and pain after cochlear implant surgery.
You can read more about our program and sign up for a HOPE meeting here.
Notes from HOPE meetings are always available on our blog shortly after the meeting.
- A New Hearing Aid, or a Simple Adjustment?
An attendee shared a success story about their visit to the audiologist. Despite experiencing a 20% drop in hearing, which was very concerning, the audiologist was able to adjust their current hearing aid to provide extra volume, thus avoiding the need to purchase a new, expensive hearing aid. This was a significant relief as it saved a lot of money. Other attendees offered suggestions such as ensuring clear visibility of people’s mouths for lip-reading and asking people to face them directly and speak slower for better understanding.
- Self-Advocacy at a Restaurant
Another attendee shared a success story about advocating for themselves at a fast-food restaurant. They noticed a sign indicating hearing assistance but discovered it was advertising braille menus. They informed the restaurant manager about the mistake, highlighting the difference between accommodations for the deaf and blind. The manager appreciated the correction and promised to investigate it. This story highlighted the importance of self-advocacy for the hearing loss community.
- Telehealth Captioning
An attendee raised concerns about the lack of captioning in group sessions for PTSD treatment, which had changed after the University of Washington switched to a system called Epic. This made it difficult for them to fully participate in the sessions and follow up on video clips without closed captioning. Suggestions from other attendees included contacting Epic’s customer service, using apps like Eye Hear for captioning, and exploring the possibility of getting CART captioning for the sessions. It was also suggested to save transcripts and use Chrome captions for YouTube videos that don’t already have captions. The discussion underscored the ongoing challenges with accessibility in telemedicine.
Note from the Chat: The FCC published a new rule that video conferencing services must be made accessible by next September. “…all online video conferencing services must be accessible and usable by persons with hearing, speech and vision related disabilities…” https://www.dwt.com/blogs/broadband-advisor/2023/08/fcc-video-conferencing-accessible-disabilities
- Doorbell Systems for Hard-of-Hearing People
A participant inquired about alerting systems for the home, specifically for when the doorbell rings and they are unable to hear it. They were looking for suggestions on effective gadgets to use. Other attendees shared their solutions, including plug-in devices that flash the lights in multiple rooms, and special systems that vibrate a bed. It was suggested to check out companies like Diglo.com for such products, and to consider replacing the old doorbell with a system designed for people with hearing loss.
- Insurance Coverage for Hearing Aids in Washington State, Plus a Call for Personal Stories
An attendee wanted to discuss new legislation that went into effect on January 1st, requiring insurance coverage for hearing aids. She was looking for individuals willing to share their stories about how this legislation would help them afford hearing aids or how the lack of coverage had previously impacted their ability to purchase hearing aids. The importance of sharing personal stories to raise awareness and advocate for the hearing loss community was emphasized.
- Post-Cochlear Implant Surgery Pain
An attendee brought up a question about their experience after their cochlear implant surgery, particularly regarding shifting pain in different areas of the head and a sensation of a smaller ear canal. They were seeking insights or similar experiences from others. The group discussed the possibility of the magnet strength being too strong and suggested consulting with an audiologist or doctor. The importance of addressing any post-surgery concerns with a healthcare professional was reinforced.
- Groups That Help Hard-of-Hearing Kids
An attendee asked if anyone knows of any groups that serve hearing-impaired children as she felt it would be beneficial to learn about their needs and how they advocate for themselves. Two groups in Washington state were suggested: 1) Hands and Voices, and 2) Listen and Talk.
One attendee shared a meaningful poem and several jokes which were enjoyed by the group.
There were a couple of good books suggested to read: Deaf Utopia by DiMarco and Successful Aging by Daniel Levitin.
Next month’s HOPE program will bring Dr. Megan Nightingale to speak on “Dementia, Tinnitus and the Impact of Hearing Loss on Brain Health.”
Contact the patient services at UW and let them know Epic does not offer caption capability. You need captions in order to participate. FCC publishes new rule that Video Conferencing Services Must Be Made Accessible by Next September. “…all online video conferencing services must be accessible and usable by persons with hearing, speech and vision related disabilities…”