Ask the Audiologist webinar

@ken82 That is so ironic that the audi was talking while the aids were "offline". If I were in that situation I would hope I would immediately tell them that I cannot hear sufficiently when "offline". Like Tony said about using a hearing app, I am trying to train myself to have my Otter at the ready for any "professional visit" or when shopping in a store.

Hi Ken82..... I really like the idea of the audiologist handing out information in a printed form. It would be nice to know what will be happening at the appointment. Also info about treatment plan and options.
When I first experienced hearing loss 4 years ago I could still hear enough to communicate well with my doctors and audi. Now hearing is much worse and I can't hear much even with the aids. Almost the first thing they ask you to do is take the aids out and then boy, it's a total loss.
Last week when I saw the ENT doctor (now called Head and Neck Department) I took a list of questions that I had printed out..... that went great. He took the time to write down all the answers and wrote down his own questions for me. Spent a lot of time with me but I learned a lot. Tomorrow I have an optometry appt. and I plan to do the same thing. Also my daughter will be with me, she is very thorough and will make sure everything gets answered and I understand it. I would really suggest having someone with you when seeing a doctor. It just makes things so much easier.
My visit with my audiologist last week did not go so well, I did not have my list with me. So I e-mailed her yesterday with a list of questions. That is another option that is working for me so far. Good luck to you! Judy

Hi Tony.... I like your assertiveness. I have suggested to my audiologist and my ENT that they set up a short training session for their group and also doctors in other specialties to talk about how to better help those with hearing loss. Maybe bring in one or two people with loss to talk to the group. They all seemed interested but I don't think anything has been done with the idea yet. I will keep bringing it up though.
I found most doctors as well as most hearing folks just don't get it. When I say that I have hearing loss they immediately start talking louder. It's not the volume it's the clarity that is the issue. So yes there needs to be a lot more understand and training. Judy

Good to see that the written word avoids the mystery meetings.. Most of the time I go to a local Clinic in Central Iowa that is served by Epic for medical records...Mayo also uses Epic, so I am able to email my doctors through the "my Chart" app on my computer or phone. I ask for a printout of each visit record..

@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

@barbb, Yes, I know a LOT of people with hearing loss near me. I am very involved with advocacy. Before Covid, I was a guest lecturer at several university campuses. I run an HLAA chapter and am president of HLAA-MI. I ran a monthly hearing loss support group at a local senior activity center and until recently, was a member of my city's disability concerns committee. HLAA has a lot of opportunities to help people learn how to help others. I completed the peer mentoring program at Gallaudet University (http://www.peers4access.org/). Many HLAA chapters are hosting Zoom meetings so, despite the pandemic, the support system still thrives.
Tony in Michigan

@tonyinmi Thank you for all the organizations and such you work with for those with Hearing Loss.. the failure of the Audiologists to get a particular facet of education should be noted in the strongest terms to the Accreditation Agency for that medical Specialty and you and others in the HLAA should take on the Audiology Education folks...Winter is coming to Michigan ..with it's lake effect snow so maybe you have the time. For example .Accreditation Commission for Audiology Education.. (ACAE) ...even look into writing an article for "The Journal of the American Academy of Audiology (JAAA)" The JAAA publishes articles and clinical reports in all areas of audiology. .. I am skeptical of much of the Audiology publications or articles as they are backed by the hearing aid companies.. Ken

@ken82 My former audiologist mentioned to me that "...we are doing this to ourselves" when I asked about the OTC hearing aids that will soon be flooding the market. Audiologists did not support the OTC bill when it was first introduced. It's not easy to research hearing aids from the manufacturers websites. There's very little information. I've always wanted to see an MSRP (manufacturers suggested retail price) but that may limit the amount of money that a hearing health care professional could charge for a device. Most people do not research hearing aids and rely on the audiologist for their expertise. I get frustrated when I hear another horror story. Despite the negativity, there are a lot of reputable hearing health care professionals out there. The OTC's are only targeted to people with mild to moderate loss but may benefit people with more profound loss, which I have. I hope that this will bring the cost of professionally fitted hearing aids down. Keeping my fingers crossed.
Tony in Michigan

@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