I Have a Disability. How About You?

December 3rd (that’s today) is National Disability Day, a United Nations recognized event also known worldwide as the International Day of People with Disability.

National Disability Day promotes education about the needs of people with disabilities as well as compassion and understanding of the challenges they face.

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Some disabilities are visible at a glance. People dependent on wheelchairs for mobility may have different degrees of severity of physical impairment but if they need a wheelchair, for whatever reason, they are eligible for accommodations under the Americans with Disabilities Act.

Hearing loss, on the other hand, is not only invisible but not everyone with hearing loss is disabled. Mild hearing loss is not usually a disability. Severe to profound hearing loss is, and these people are entitled to accommodations under the ADA. But many who have severe and even disabling hearing loss refuse to acknowledge it, fearful of stigma and discrimination. In order to get accommodations under the ADA, you must acknowledge disability. Many are unwilling to take that step. That complicates advocacy for all of us with hearing loss.

Deputy Inspector Daniel Carione of the New York City Police Department put this eloquently in a talk he gave at a meeting of HLAA’s New York City Chapter last spring. Carione was a 22-year much-decorated veteran of the NYPD when he was forced to take early retirement in 2011. The reason? He wore hearing aids. He decided to fight the ruling. Before he had any legal ground to stand on, he told the audience, he had to make an important admission to himself.

“The Americans with Disabilities Act is not this heroic shield that falls from the sky and protects each and every person who may or may not be disabled,” he said. “You have to be disabled. That was very difficult for me to accept.”

Dan Carione does not look disabled. He was—and is—a powerful physical and intellectual presence. To use the word disabled about himself defied the visible reality. But his attorney knew that admitting disability was essential. “One of the first things she taught me was to use the word disabled. It’s counter-intuitive. It hit me in the head like a dart because I didn’t want to use the word disabled. But if you’re not disabled, the ADA can’t protect you.”

As a hidden disability, and one with stigma attached, hearing loss is often not acknowledged. This harms not only those who refuse to acknowledge it but it also makes getting accommodations for the rest of us even harder. If a movie theater thinks you’re the only person in the audience who needs captions, that makes it easy to say it’s an expense they can’t afford. I go to a movie theater in the small town where I live part time. The audience is preponderantly gray. Statistics tell us that many have hearing loss that is severe if not disabling. Half of those in the United States 75 and over have disabling hearing loss, according to the NIDCD. But you’d never know it because you can’t see it and they aren’t talking about it.

So on this National Disability Day, if you have hearing loss and can’t hear a speaker at a lecture or at your place of worship, can’t hear at a movie, can’t hear that airline announcement, speak up. Ask for a hearing assistive device. Ask for captions. Ask for accommodations. Speak up for yourself, and you will be speaking up for all of us.

 

For more about hearing health, my book “Smart Hearing.” will tell you everything I know about hearing loss, hearing aids, and hearing health.Smart Hearing Cover final

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it.

 

 

 

 

 

“Affordable” Hearing Aids

There’s a lot of talk about “affordable” hearing aids, much of it in anticipation of the Food and Drug Administration’s final approval of an over-the- counter hearing aid. We don’t know the specifics of the future OTC hearing aid but some have speculated that the cost will probably be around $1000.

Comparatively speaking, that is affordable. The cost of high-end hearing aids is approaching $4000 (for one). $3000 is not unusual. Costco’s least expensive hearing aid is $999.  There are less expensive devices, many available online, some of which use the term “hearing aid”, but buyer beware. For some people, they may work well out of the box. Others may end up with hearing aids that aren’t really right for them. As for hearing-aid like devices, PSAP’s or hearables, for some they will be adequate but for others not so good. And if they are too cheap, a 2016 Consumer Reports survey found, they can actually damage your hearing.

But these low-cost alternatives are still a major expense for many Americans, especially older Americans.  Earlier this year a Federal Reserve Board survey found that 40 percent of Americans could not cover a $400 emergency expense without selling something or borrowing.  A $1000 affordable hearing aid is not “affordable” for 40 percent of our population.

Medicare does not cover hearing aids. Some Medicare supplement programs do, as do some other insurance policies. But that 40 percent who can’t find a quick $400 for an emergency probably do not have this level of insurance. The V.A. also provides hearing aids to veterans with service-related hearing loss.

For many, Medicaid is the only solution. Medicaid covers hearing aids for adults in 28 states, including New York State where I live. For a complete list of states and of eligibility requirements for hearing aids, based on the severity of the loss, see this recent article in Health Affairs. Coverage varies widely from state to state, as does coverage for associated services like hearing-aid batteries.

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In this map, the dark red states have the best Medicaid hearing aid coverage. The pink states have no hearing aid coverage. The other states fall in between.

As the Health Affairs article concludes: older Americans “in states lacking comprehensive hearing health care coverage have few ways to access hearing aids or the professional services associated with hearing loss and hearing aid use.” As we know, untreated hearing loss is significantly related to other adverse health outcomes, especially in the elderly.

The Health Affairs study also found that over one-fourth of adults skipped necessary medical care in 2017 because they were unable to afford the cost.

So when we talk about “affordable” hearing aids, let’s remember that that is a relative term.

 

For more about hearing health, read my new book, which will tell you everything I know about hearing loss, hearing aids, and hearing health!Smart Hearing Cover final

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it.

 

 

 

 

 

 

 

Will Your Health Insurance Cover Hearing Aids?

The second installment of Hearing Tracker’s survey of 2000 hearing aid users has just been published, and it includes some interesting facts and figures.

Paying for Hearing Aids with Medical Insurance, the new Hearing Tracker report,  is based on a survey of 2000 hearing aid users conducted earlier this year by Hearing Tracker and its founder, Abram Bailey.

The news is that 25 percent of hearing aid buyers received some insurance reimbursement. The coverage ranged from $1226 (partial coverage) to $2131 (full coverage). Bailey warned readers that these figures are based on recollection and that people should go to their provider to get an exact figure.

There are two ways of looking at the fact that 25% of hearing-aid users received help in paying for hearing aids. The good news is that this figure is up from 13% in 2008. The glass is half full: the number of people with insurance has doubled in the past decade. Or it’s half empty: three quarters of hearing aid users are paying out of pocket, including Medicare recipients.

Here’s a breakdown of reimbursement by insurance provider. Before you decide to change insurance companies, take heed of Hearing Tracker’s caveat: Please remember that the dollar figures below represent recollections and guesses of hearing aid consumers, and may not accurately depict differences among companies. Screen Shot 2018-10-29 at 8.17.14 PM

The comments accompanying the article show that coverage is hugely variable, with many readers writing in to tell their own experiences. There seems to be no definitive answer to what insurance covers what, even in the same state with the same insurance company. This is not unusual in the health-insurance field, as followers of Jeanne Pinder’s ClearHealthCosts.com know.

Three states mandate hearing-aid coverage for adults. Arkansas requires coverage of $1400 per aid every three years. New Hampshire $1500 per aid every 60 months (every five years). Rhode Island $800 per aid every three years. As Bailey wrote: “If you live in one of these states, consider yourself lucky.”

This survey got its start last spring,  when I asked Bailey whether the discussion of over-the-counter hearing aids and non FDA-approved “hearables” had had an effect on the market. I was also curious about insurance coverage, partly because a friend of mine had just gotten two high-end hearing aids, fully covered by his insurance. As far as I can recall, I have never received reimbursement for a hearing aid, so I was surprised.

Bailey responded with the idea of a survey,  which he created. It was sent to those who subscribe to his website, those who follow my website, and to HLAA members. The  respondents represented an experienced and committed group of hearing aid users, and their responses may not be representative of hearing aid users as a whole.

The first report on the survey was published in June 2018 and focussed on the cost of hearing aids. You can read that report here.

I said above that there is no definitive answer to what insurance covers, even in the same state with the same insurance company. Actually, there is one question with a definitive answer: Does Medicare cover hearing aids? The answer is a categorical No.

 

For more about hearing health, read my new book, which will tell you everything I know about hearing loss, hearing aids, and hearing health!Smart Hearing Cover final

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it. 

 

 

My New Book

SMART HEARING: Strategies, Skills and Resources for Living Better with Hearing Loss. Smart Hearing_Cover_highres

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook.

If you’re one of the the millions of Americans who have experienced hearing loss, whether newcomer or longtime veteran, this book is for you. It’s also for your friends and family, employers, counselors, clergy. Hearing loss is much misunderstood.

If you follow my blog, you’ve read some of this, but there’s much much more. Smart Hearing is an easy-to-read, comprehensive look at a big, confusing field. I hope you’ll read it, and share it with others who don’t seem to fully get what it is like to have hearing loss.

The opening chapters are about the basics: how to find an audiologist, how to buy a hearing aid, and how pay for it. Later chapters guide you through the world of assistive listening technology, CART captioning, hearing loops, and telecoils. Find out what a cochlear implant is, and who can benefit from one. Chapters on tinnitus and vertigo offer suggestions for prevention and treatment. (In the case of vertigo, some of the suggestions are from personal experience.)

The past year has been a tumultuous time in the hearing-health field. Smart Hearing untangles the confusion about over-the-counter hearing aids, PSAPs, the FDA and what it approves and what it doesn’t.

Everyday experiences are often frustrating for those with hearing loss: dinner parties, travel, work, restaurants. There’s a chapter on managing each of these challenges.

Finally, Smart Hearing urges reader to take note of the sometimes significant health costs of not treating hearing loss.

I hope you’ll read it and share it, and maybe even get your library to order it.

Hearing Aid Facts and Figures

Almost a year after the passage of the Over-the-Counter Hearing Aid Act of 2017,  I was curious to know if the bill and the attendant publicity had affected the hearing aid marketplace. So I asked an expert: Abram Bailey of Hearing Tracker.save-money-image

OTC hearing aids won’t be on the market for months, if not years. But the one-year anniversary seemed like a good time to try to establish some kind of benchmark in terms of sales, prices, location where purchased, brands, cost and other issues that may begin to shift after OTC hearing aids become available.

The bipartisan OTC bill, sponsored in the Senate by Republican Chuck Grassley and Democrat Elizabeth Warren, was signed into law by President Trump in August 2017. The FDA, which regulates hearing aids, has three years from the time the bill was signed for comments and questions. The final regulations will reflect the views not only of consumer advocates but also of audiologists and other medical professionals as well as hearing aid companies and dispensers. Until that comment period is over, there will be no OTC hearing aids.

Abram Bailey constructed a survey that was filled out by over 2000 consumers. (Here is a link to the survey) The respondents were a self-selected group, already aware of their hearing loss and many already wearing hearing aids. The survey was sent to Hearing Tracker followers, HLAA members, and people who follow my blog.

Part 1 of the survey was published last week. Parts 2 and 3, focusing on hearing-aid preference and recommendations, insurance coverage, and purchase of accessories (assistive listening devices, for instance), will be published in the coming weeks.

The survey first established the demographics of the respondents: 54.7 were female and 44.2 male. More than three-quarters were over the age of 55, with pretax income that reflects that of the population at large. More than half were retired. Their self-reported levels of hearing loss ranged from mild to profound, with 18.2 percent reporting that their hearing loss was profound, and 31.4 percent reporting severe hearing loss. As would be expected from the respondents surveyed, many were experienced hearing aid users, over half with 10-plus years of use. This is a very different sample from those who are just now becoming aware of their loss and buying hearing aids, but the trends are interesting.

Almost all (84 percent) bought a pair of hearing aids, as opposed to a single aid. More than half bought what they understood to be top-end hearing aids and more than a third bought mid-range hearing aids. The average price paid was $2560 for a single aid, or $2,336 per aid when purchased as a pair. This is more or less in line with the reports from the President’s Commission on Hearing and Technology (October 2015), which recommended a “basic” hearing aid, and the National Academies of Sciences, Engineering and Medicine (June 2016), which found an average cost of approximately $4700 for a pair of hearing aids.

The top brand purchased by survey respondents was Phonak, with Oticon and ReSound second and third. Eleven other brands were purchased by at least 10 respondents. Not surprisingly, the share of the US market reflected sales figures, with Sonova (Phonak) accounting for 30 percent. William Demant (Oticon) and GN Resound third. All three also own other brands. (The market share statistics date from 2015, and may have changed.)

Did cost affect market share? Starkey (# 4 in market share at 16 percent) had the highest average price paid ($2,674), with Widex (with 3 percent of market share) being the second most expensive ($2,672). The least expensive were Kirkland Signature (Costco’s house brand) at $963.

I was interested to see that the vast majority were fitted by and bought through audiologists (75.18 percent) or hearing-instrument specialists (20.46 percent) Audiology training is far more rigorous than that of hearing instrument specialists. Hearing aids sold by audiologists (1056 responses) cost on average $2,499 per device, those sold by hearing instrument specialists (337 responses) $1944 averaged per device.

The data also revealed, however, that hearing instrument specialists and audiologists seemed to charge the same amount when in similar settings (a local office, for instance). The disparity may reflect the fact that at Costco hearing professionals are mostly hearing-instrument specialists (40 percent) with only 4 percent audiologists. Those who bought at Costco, the survey found, were more than twice as likely to have been fitted by a hearing aid specialist as by an audiologist. Costco’s current estimated market share is 11 percent of all US hearing aid sales.

Costco sells, in addition to its own brand, Phonak and Resound, at vastly reduced prices. How is this? Abram Bailey speculated that it may be due in part to the fact that the aids sold are not the brand’s latest model (usually one generation behind flagship stores) Costco also can purchase in volume, and has very little overhead for its hearing aid sales.

Most surprising to me was the response to a question about the length of time it took for respondents to buy hearing aids once they had learned about their hearing loss. It is commonly said that most people wait 7 to 10 years before buying hearing aids. Over half the survey  respondents reported buying their first hearing aids within two years of learning they had a loss. As Bailey noted, this discrepancy may be the result of sampling bias (the respondents were all already hearing-aid users) or erroneous self-reporting (a respondent might like to think she had bought hearing aids within two years when in fact it had taken her 4-5 to make that decision.)

As the survey says, Stay tuned for more.

 

 

Do Your Hearing Aids Sweat?

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It’s hot. And humid.

Perfect weather for ruining your hearing aids.

Moisture. Whether it’s humidity or sweat, getting caught in a downpour, or diving into the pool, moisture is terrible for your hearing aids. It’s damaging to the delicate inner workings (the microphone, flexible circuit board, disposable battery, receiver and antenna). And it can clog the tubing that connects your behind-the-ear processor to the in-the-ear component.

Wax: Hot weather seems to increase wax buildup, which can block your hearing and makes your hearing aid dirty. If you have a custom mold, waxy buildup may make the in-the-ear mold uncomfortable. If your hearing aid has wax guards, make sure you replace them regularly. If it doesn’t, a small brush and pick to clean wax out of the tubing and ear mold is helpful. Don’t forget to clean the battery compartment.

Full immersion? Accidentally dunked your hearing aids?  Don’t panic. Take the hearing aid out and remove the battery (discard it). Shake the hearing aid to remove any excess moisture. If the water is salt water or dirty, rinse the component with fresh water. Dry it off and then leave it on dry newspaper overnight. You can also use a hair dryer but only on a cool setting. Audicus suggests putting the aid into a jar of uncooked rice. Never expose the hearing aid to heat, and if you’re thinking maybe the microwave would be faster, don’t do it!

Many people routinely put their hearing aids in a hearing aid dehumidifier overnight. This would also be a good place for the wet hearing aids as well. Harris Communications offers a variety of these, as does Amazon.com and other retailers..

Do hearing aids sweat? No, it just feels like it.

For more about living with hearing loss, see my books at Amazon.com.

 

Where Hearing Loss is the Norm

There’s one event a year where my hearing loss is not afb_nyc_chapter FB profile factor in my ability to communicate.

That’s the Hearing Loss Association of America’s annual Convention.

This year’s convention was held in Minneapolis June 21st to June 24th. I don’t know how many attended but virtually everyone was deaf or hard of hearing – or accompanying someone deaf or hard of hearing. A few audiologists also attended – it’s great to see their interest in what people with hearing loss want and need.

Convention is a mix of lectures, workshops, parties, seeing old friends and making new ones.

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At Convention, where hearing loss is the norm.

The larger events – the keynote address, the research forum, the awards brunch – offer three different forms of hearing accommodations: a hearing loop, CART captions, and ASL interpreters. The smaller workshop gatherings provide CART, some offer looping as well, and an ASL interpreter was available on request.  My hearing loss is severe enough that I need CART as well as the loop. The Deaf may use CART to elaborate on what they hear through the ASL interpretation. It’s actually thrilling to be in a place that offers so many different ways to hear

This year’s keynote speaker was Gary Shapiro, president and CEO of the Consumer Technology Association. Consumer electronics are playing an ever larger role in correcting hearing loss. Shapiro’s talk was a guide to this exciting new field of hearing instruments.

The three-hour Friday morning research symposium consisted of a panel of four experts discussing listening in noise. They explained why it is so difficult for hearing aids and cochlear implants to correct for background noise, and technological innovations that  may solve this problem.

As always, there was a large exhibit hall where you could try out new devices, find out how to get a hearing dog, how to add an app to your smartphone to make it easier to understand on a cell phone. My cochlear implant manufacturer, Advanced Bionics, even made a minor adjustment to my cochlear implant at the convention, adding a small magnet to my headpiece, which had been slipping.

The themed Get Acquainted Party is always popular with newcomers and old hands alike. This year’s theme was the 70’s, complete with Go-Go dancers and hilarious costumes. On Saturday evening, Mandy Harvey, a deaf singer-songwriter who was also an America’s Got Talent winner, gave a concert for a few hundred people, some of whom could not resist getting up to dance.

Saturday night, a group went to the famed Guthrie Center for a performance of “West Side Story.”

Workshops on four educational tracks occupied the daytime hours. These tracks included Advocacy, Hearing Assistive Technology, Living with Hearing Loss, and Hearing Loss in Health Care settings. The last category is a new one for HLAA, and it addressed how people with hearing loss can make sure an encounter with the health-care system includes clear communication from health-care professional to patient, and vice versa.

In between formal events, friends met for meals, or a walk in beautiful Minneapolis, or took a trip to the Walker Art Museum and the adjacent outdoor sculpture park. Big name tags with large print make it easy to strike up conversations with new people or those you may have met at other conventions. As a person with hearing loss, I find name tags one of the most gratifying aspects of convention. I am bad at hearing names and bad at remembering them, which makes it hard to initiate a conversation with someone new, and sometimes even with people I know quite well, when the mind balks at remembering. Name tags do the work for me.

Almost everyone at Convention is hard of hearing, and accommodations are provided as a matter of course.  It’s fun – and also something of a relief – to be the norm for a change. Next year’s Convention is in Rochester, N.Y., home to what may be HLAA’s largest chapter as well as the Rochester Institute of Technology and the National Technical Institute for the Deaf. If any city in America can be said to specialize in hearing loss, Rochester is it.