Ask the Audiologist webinar

@judyca7@tonyinmi Do you know other people with hearing loss who are near you? How about turning assertiveness into advocacy. Instead of asking them to set up a short training session, you and anyone else if available, offer to go talk with their staff about how to be more effective with people with hearing loss. I have various ideas as to subjects you could cover. I am pretty sure the HLAA website has something on health advocacy. If you wanted help with more specific ideas as to a presentation or talk with leadership I could produce some.

@judyca7 Judy, that's a good idea to suggest that the ENT and audiologists have a training session but my guess is that most will not follow through. Audiology used to include consultation with the family, aural rehabilitation, and mention of other Hearing Assistive Technology (HAT). They've gotten away from that. This may explain why the Hearing Loss Association of America (HLAA) was formed. There was a lack of a good support mechanism where people could share what they knew with others. My audiologist had an audiologist intern at my last visit. Neither one of them knew about the speech to text apps. This is frustrating. The professionals may not be trying to stay up to date AND the schools are not teaching this stuff.
Tony in Michigan

@julieo4 Thank you Julie for your wide ranging perspective on HLAA's development. I took the liberty of sending your comments to the NYC board.

@julieo4 I should have said "to" the HLAA NYC board.

@julieo4 Thank you Julie for your wide ranging perspective on HLAA's development. I took the liberty of sending your comments to the NYC board.

Thank you barbb. It's evolutionary. We, who live with HL, know what we need IF we have learned that ourselves. So many have not. And, it's the hearing healthcare industry that has failed to teach us. I respect audiologists. I respect ENT medical professionals. However, I know, as you do, that unless you live with hearing loss yourself, it's very hard to understand how it affects a person. I'm in a discussion right now with a healthcare professional who has hearing loss herself. She is devastated by the way people at her work place treat her. She is unhappy and depressed. See's no answers. It's so hard to believe that the people she purchased hearing aids from (I don't know who they are), did not tell her about assistive technology. This goes on and on and on and on.

@julieo4, Interesting situation. There's one you could accomplish a lot with, if she can be open to it! I hope you can report on the progress (or lack of). With you last sentence, I'm not sure which "this" you are referring to!?

@ken82 & Others:

The metamorphosis that HLAA has gone through since being founded by Howard "Rocky Stone", a retired CIA employee, as Self Help for Hard of Hearing People (SHHH) in November 1979, has been interesting. (NOTE: They didn't include the P in the acronym because they didn't want to be referred to as 'sheep'. Hard of hearing people often say they feel invisible or that they have had no one to follow through the process to help themselves. Rocky wanted us to lead rather than follow!)

The hearing healthcare profession did not jump on board to support SHHH in the early years while they assured us that hard of hearing people would not come out of hiding to be involved and that the organization would fail. Many came on board as the organization grew and people learned. The original name, SHHH, was established during a time when the self help/mutual help movement was growing. The name change in 2006 was declared necessary because people were not finding the organization on the internet. It needed 'hearing loss' in it's title. It was a logical change, but I still miss the old name as self help is so important.

I was elected to the first elected national board of SHHH in 1984, and served on the executive committee with 2 years as president during my 14 year tenure on the board. It was an incredible learning experience as we promoted the development of and acceptance of assistive technology that went beyond hearing aids, including cochlear implants. SHHH was instrumental in the founding of the National Institutes of Health/Institute on Deafness and Communicative Disorders. (NIDCD). And was also involved in defining 'communication access' to include all of those technical devices that were developing when the Americans with Disabilities Act was legislated in 1990. Had the organization not been active and in place, that definition would have been totally about manual communication. We were new kids on the block, and we fought hard for that voice.

It took a while for the audiology profession to accept the reality that we were for real. We were becoming educated. We were advocating. We were sharing information that most hard of hearing people had no previous access to. National conventions brought us together. Just learning that we were not alone was life changing. Those of us who were in our 30s and 40s back then realized that hearing loss affected young people too. We wanted more. We wanted better hearing aids. We wanted more assistive technology. We educated and advocated, and we served on the board at our own expense, which mean traveling to Bethesda MD 3-4 times each year. Obviously we believed what we were doing was important.

In the mid 90s, the audiology profession came to us for support. They asked us to support the doctorate level degree as the entry level degree to their profession. We were concerned because masters degreed audiologists were not common. We knew that rural areas were not being served. We agreed to support the profession with some stipulations. Among those was that substantial counseling courses be included in the AuD program, and added to the BS and MS programs. We suggested that hearing aid orientation programs be included in the delivery system, and suggested further than experienced hearing aid users be hired to facilitate such programs. At that time, SHHH developed a 'hearing loss support specialist program', that trained many people on facilitation, peer support techniques, on technology, etc. Further, SHHH helped Gallaudet University develop the Peer Support Program that Tony mentioned. It was hoped that people who completed one or both of these programs, along with their own experiences with hearing loss, would be perfect candidates for hire to facilitate those orientation programs that had been recommended. It didn't happen. Our suggestions fell on 'deaf ears'.

The OTC hearing aid issue came about more recently because data generated by NIDCD and other groups shows that less than 20% of the people who could benefit from hearing aids have them. The main reason identified in research is COST, with lack of insurance. OTC devices, while not having the same quality as those manufactured as true hearing instruments, do help. Many of the OTC devices are similar to the hearing aids many of us used years ago. They amplify. They help. Logic suggests that if someone in the early stages of hearing loss receives help from an OTC aid, they will eventually want a better device. There is no question that more costly newer digital products can do more IF they are properly fit.

HLAA members today continue to do presentations, programs, etc. as volunteers. Like Tony, I have presented at universities, service organizations, churches, schools, businesses, etc. many times over the years. Each presentation brings enlightenment to people with hearing loss, and amazement at how much they do not know even when they have been using hearing aids for years. Most frustrating, is learning how many have never heard of hearing assistive technology in spite of having spent thousands of dollars for hearing aids. How can that be?

HLAA has done so much, but the organization needs the support of all people who care about making hearing loss an issue of national concern. I encourage all who have concerns about hearing loss and how little attention it gets, to join HLAA or donate to support the organization. We all think that HLAA should do more. We all want HLAA to do more. But the reality is....they can only do so much with the resources they have. During COVID19 it has been extremely difficult financially for HLAA. The Walk4Hearing events have been done 'virtually'. They have brought in far less revenue than the fun outdoor events that draw families do. The national convention scheduled for last June had to be cancelled. That affected revenue. Thankfully, HLAA has managed its finances well, and has received support from bequests from early members who so frequently said "SHHH/HLAA gave me my life back! I want to support the organization."

HLAA is currently celebrating Founder's Month, and an HLAA Giving Challenge. I hope many of you will consider providing support to HLAA this year. http://www.hearingloss.org It's our organization. Without support from us, it cannot grow. HLAA is the nation's leading organization representing consumers with hearing loss. It's mission is to open the world of communication through information sharing, education, peer support and advocacy.

Each year, many times, but especially at Thanksgiving, I express my thanks for SHHH/HLAA. It gave me my life back too.

Julie Olson

@julie04, This is a great story. I've read about some of this from my years as a member of HLAA. But you've lived it during its infancy. Thanks for sharing this and for all the years of dedication. If it wasn't for the work of this organization, people with hearing loss would most likely be at the mercy of their hearing care providers. We know that they do not have all the answers, and certainly not always the best solutions. It's exciting to be part of the support network.
Tony in Michigan.