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Blog: Hear Better With Hearing Loss
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My blog now has a new location. To go to the site click on Hear Better With Hearing Loss.
My home page, events, and information about other web sites will stay right here. It's a work in progress, so let me know if you're having trouble.
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Summer is nice for lots of reasons, but for people with hearing loss, it's a vacation not only from work, or meetings, or daily obligations but from the effort of hearing.
i've just started my vacation, at a house in Western Massachusetts that I spend time in all year long. In August I retreat to the house and my garden. Too many tourists in town, too many people in the restaurants, traffic jams and impatient drivers at the area's many summer cultural offerings. But up here five miles out of town, it's pretty quiet. And for once I can hear what people say. I visited a neighbor today and we sat in her yard and took a dip in her pool. She's a New York friend and I have a very hard time hearing her at social events and at the dog run, where we often meet. But sitting by her pool, with a view over the Berkshires, I heard every word she said. We had a conversation! In the garden, I can basically turn off my hearing and focus on the sun, the weeds, the task of giving the flowers or the vegetables some breathing room by yanking out the chickweed that seems rampant this year. Dinner on our screened porch with my husband, the cicadas as background music, is also a time for conversation. Alas, when we retreat from the chill into the kitchen -- my design! -- with its cathedral ceiling and beautiful bare wood floors -- his voice bounces up and around and down and up again and I can't hear a thing. But tomorrow we'll have breakfast on the porch, and instead of cicadas the morning birds will cheep and chirp, and except for the occasional passing car (boy, are they noisy), it will be blissful acoustic heaven. Town Hall, one of Seattle's major venues for talks, lectures, readings and other performances -- and a beautiful historic building -- is at this very moment in the process of installing a hearing loop.
The inauguration will be September 15, and if you're in Seattle be sure to come. Here's a link to the event. I'm the featured speaker, because in a way it all started with me. Town Hall was inspired to install the loop by the record turnout for a reading I did there in February of 2013. The Washington State HLAA arranged for CART and publicity and the audience was full of people with hearing loss who would not have come to an event without hearing assistance. Congratulations to Cheri Perazzoli, of Wash State HLAA for her persistence and energy and organization in getting this accomplished. And many many thanks to Town Hall! Medicare's wrong headed policy about the coverage of hearing aids may be about to get worse. There's already a specific statute in the Medicare law prohibiting coverage for hearing tests and hearing aids.
Seniors with hearing loss either pay for them (at $6000 or more for a pair), buy a cheap substitute (a PSAP -- personal sound amplifying program), or quietly go deaf. And I do mean quietly. Most older people with untreated hearing loss simply retreat from active life, because it's not that enjoyable when you can't hear. They isolate themselves, which is a strong risk factor for cognitive decline and dementia. They're at a greater risk for falls, because hearing loss is associated with dizziness. If they're still in the workplace, they probably give up and go on unemployment. None of these things are good for their health, or for our country's economy. Now Medicare is proposing to withdraw coverage for a kind of hearing aid that is surgically implanted. The Bone Anchored Hearing Aid, or Baha. No one would go this route unless they were seriously hearing impaired, but Medicare doesn't seem to think this is reason enough to cover them. What's really interesting is to read the relevant passage in the CMS proposal. Medicare won't even save a significant amount of money on this! Here's the passage: c. Proposed clarification of the statutory Medicare hearing aid coverage exclusion stipulated at section 1862(a)(7) of the Act This proposed rule proposes to clarify the scope of the Medicare coverage exclusion for hearing aids and withdraw coverage of bone anchored hearing aids. This proposal would not have a significant fiscal impact on the Medicare program, because the Medicare program expenditures for bone anchored hearing aids during the period CY2005 through CY 2013 are less than $9,000,000. This proposed rule, if finalized, would provide further guidance about coverage of DME with regard to the statutory hearing aid exclusion. The proposed rule, if finalized, would leave unchanged coverage of cochlear implants and brain stem implants. HLAA, the Hearing Loss Association of America, just concluded its annual convention, a gathering of people with hearing loss and experts on hearing loss from all over the country. Some even came from out of the country.
This year it was held in Austin. I was too busy at the convention to do much sightseeing but I did spend one afternoon at the LBJ Library, which was a surprisingly moving experience, and not to be missed. This year, as other years, we heard about new advocacy initiatives that HLAA is pursuing in the interest of equal accommodations for people with hearing Loss. Anna Gilmore Hall, the new executive director, spoke about a Consumer Technology Initiative that should help hearing aid users deal with the complications of technology. We also met the new National-Chapter coordinator, who is working to make the national and state and local chapters cohere into a unified whole. There were workshops and symposiums all day Friday and Saturday, as well as a three-hour science symposium, which this year was more about technology than science. But technology is the story of the hour, with new products coming on the market almost daily. We heard about some particularly interesting ones, including an FM system that allows four people with hearing loss to both speak to and hear each other in a noisy place. A new cell phone captioning system was also introduced. I haven’t tried it so I’m not going to write about it but it looks promising. Captioning has always been a weak link, slow and garbled much of the time, but this system seems much more accurate and much faster. It will even translate messages left on your voice mail into text. Richard Einhorn gave a moving keynote address about his midlife hearing loss. Richard is a composer and showed a clip of one of his pieces set to a silent film, The Passion of Joan of Arc. But he was also a classical music producer and if anyone knows about sound and acoustics, he does. Nevertheless, even he is jury-rigging systems and trying this and that trying to find the right technology for his hearing loss. And if he finds it, that doesn’t mean it will be right for my hearing loss, or for yours. Hearing assistive technology is right now a promising, exciting chaotic mess. The workshop that I found most enlightening was a panel of veterans, Heroes With Hearing Loss, who told about their experiences. How they lost their hearing, how it overlapped and exacerbated – or was exacerbated by – Post Traumatic Stress Disorder and Traumatic Brain Injury. Tinnitus is almost a universal condition of returning veterans. And hearing loss is by far the single largest category of disability claims. The VA does provide hearing aids for those who qualify, but as we all know the VA has been having trouble of its own. It takes months to get an appointment with an audiologist and when you finally do, the panel said, a hearing aid is prescribed and it’s out the door. It can take six months to get a follow up appointment. Ideally, you should go back to the audiologist two or three times in the first month for reprogramming and other adjustments. The veterans on the panel were articulate and deeply moving. Their hearing problems were sometimes one small part of much larger injuries. But they’ve banded together to share their experiences with other veterans and to encourage others to seek help. As one of them said, vets are stubborn, but they will take advice from a fellow vet. The Heroes with Hearing Loss panel travels around the United States with its message. If they come to your area, be sure to get to the event. Saturday night was the banquet, everyone in slightly nicer duds than they’d worn the rest of the time. Dinner was something for everyone on a single plate. (No need to advance order a special dietary menu, you just picked and chose). Fish, shrimp, steak, something that I think was mashed squash, asparagus. Gael Hannan was the evening’s entertainment. Gael’s both a performer and a well known blogger about the experience of hearing loss. Her 20-minute routine poked fun at herself and all of us with hearing loss. Our quizzical expressions when someone is talking and we want them to think we understand them. The various head tilts to get your hearing aid or implant into the best place for hearing. The “un-huhs,” and “mmms” and nods that we all resort to when we haven’t quite gotten what was said. It was sharp – I certainly felt the sting, as I’m sure others did – but completely on target and truly funny. This morning as I took at taxi to the airport at 6 am, I found myself thinking of Gael’s hilarious portrayal of the deaf-ish person who just doesn’t want to bother explaining. As the driver yakked for the 40 minutes of the trip I nearly had to laugh as I found myself saying, “Mmmm…” and “Un-huh” and laughing where it seemed appropriate. Finally, back to that term “deaf-ish.” As Gael pointed out we have no quick and easy term for ourselves. We’re people with hearing loss, hearing impaired (some people don't like that one), hard of hearing, hearing challenged, whatever…… Gael suggests we just call ourselves HOH’s – Hard of Hearing-s. And her schtick on that had the HOH’s in the audience roaring with laughter. Thank you Gael! There’s a lot going on at HLAA right now. We have a dynamic new Executive Director, Anna Gilmore Hall, who in her first year has made tremendous strides in bringing the local chapters, state organizations and the National organization into a coherent relationship. Some chapters, including my New York City Chapter, have adopted a One HLAA membership structure. When you join the NYC chapter you automatically become a member of the National Organization, and vice versa. A portion of the membership fee goes to National and a smaller portion to the chapter. In New York we all feel that this has already made us a more coherent part of a powerful national advocacy organization. Anna has lots of other plans, including the institution of a Consumer Technology Initiative. As I said earlier, we are all confused by the plethora of technologies out there – even tech genius Richard Einhorn. So this is a very welcome initiative. If any readers were also at the convention, please add your comments on the convention and tell us about your experiences. Couple of photos of Austin from the air. More tomorrow on the events at the Hearing Loss Association of America. Interesting lineup of speakers so I"m sure there will be much to report.
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