Hearing Informed

Since 1989, Knowles Electronics has conducted seven Marke Trak surveys of the US hearing loss population. In one of the most recent surveys from 2007, some disturbing statistics were unearthed. It was determined that there were 1.2. million children ages 0 to 17 in the United States: 1) whose parents admitted that their children had “hearing difficulties” and that 2) that children did not use amplification. That leaves out the estimated 300,000 dependents aged 18 to 21 with unamplified hearing loss. In some of these cases a hearing aid wouldn’t be the answer. But a vast majority of these children are being left behind by going without hearing aids. It goes without saying that these children are denied a basic right to communication; its effects are like cascading dominoes that lead to mental health problems, social ineptness, lack of self confidence, poor academic performance, and overall broken dreams.

In Marke Trak VII, a targeted survey was sent to 3,000 parents of these dependents that have hearing loss but don’t wear any kind of hearing device. They were asked to discuss four major issues: 1) the nature of the dependents loss; 2)the treatment sought; 3)impact of hearing loss on dependents life, and 4)reasons why dependent does not use hearing aids. Almost 90% of the parents responded in some form to the survey.

These responses shed light on haunting levels of ignorance and denial. Many the letters are downright flippant. There is usually a glaring discrpency between the subjective reporting of their child’s hearing loss level and the realities that are espoused in the letter. In fairness, some of these parents want the best for their children but can’t afford hearing aids or don’t get qualified advice. So many important questions are raised by these letters:

Minimization, Denial, or Neglect?…

“Kept saying ‘what’ at a young age of 4. Doctor said it may get worst or better not sure, but so far stayed the same. She was in special education so school was OK most of the time. At school she sits up close. Music, TV and games she turns up loud. Did not get hearing aids because doctor said it wasn’t bad enough.”—Parent of 20-year-old female described as having a moderate hearing loss in one ear

“The hearing loss was discovered from my daughter’s speech. She doesn’t talk as well as she should. The family doctor has her going to Easter Seals for speech. Hearing testing was mild but not real bad hearing loss.”—Parent of 4-year-old female with mild hearing loss

“When you talked to him, he wouldn’t answer you or he would say, huh? You have to repeat what you say to him. The teacher sets him closer up front of the class. He does not have hearing aids because his hearing isn’t that bad yet.”—Parent of 8-year-old child, with hearing loss described as moderate and inability to hear normal speech across a room

“She has requested seating at the front of the room in school in some classes. She will turn the TV up to a point where it is almost uncomfortable to others. Surgery repaired the rupture to her ear drum and she just lives with the mid to moderate hearing loss. Her hearing loss is not severe enough to warrant hearing aids.”—Parent of 14-year-old female with infection as a child, ruptured eardrum, and subsequent scarring from surgery, described as having a moderate hearing loss

“If she is in a room next to the room I am in, I have to shout or use the phone to call her. If she is in the same room, I have to speak loud and slow. I do not think her hearing is bad enough to warrant hearing aids.”—Parent of 15-year-old female with mild hearing loss and inability to hear normal speech across a room

Professional Recommendations…

Many of the parents in the survey make decisions not to to explore hearing aids for their children based on “professional recommendations” from pediatricians, audiologists, family physicians, or ENTs. Some of the parents received conflicting information from two or more professionals. Most of the information seems to either be egregious misinformation or a severe misunderstanding of competent information. Some of these “professional recommendations” that follow are completely perplexing…

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From the point of view of a hearing impaired person, the iPhone sucks. The features that would make the phone more accessible to the hearing impaired are within the internal chip’s capabilities but they have been purposely crippled by the software that runs the phone.

Paula Rosenthal at Hearing Exchange has this to say,

Apple’s new iPhone is not hearing aid compatible on microphone or telecoil settings. Complaints have been filed with the FCC because HLAA believes that Apple, when designing the phone, could have tested it for hearing aid compatibility implemented standards to make it accessible to hearing aid and cochlear implant users.

A hearing aid like Oticon’s Epoq is Bluetooth enabled: it’ll take sound from an MP3 player or phone (or both) and route the sound wirelessly right into the ears. No headphones, no interference, and because they are tailored to fit, they sound great too. However, Steve Jobs has decided to cripple the iphones nascent features so that the iPhone supports mono, call only Bluetooth. i am not part of the “i” in iPhone.

Thanks to David at Hearing Mojo for bringing this to my attention. Check out this forum discussion at MacRumors and go to the iPhone discussion area and tell them what you think. Also see this locked up thread at Apple’s iPhone discussion area.You can also call Apple’s PR Department at (408) 974-2042 or write Steve Jobs.

For the more technically inclined check out Live Journals “Hearing Aid Hacking”.

Though I couldn’t disagree more with some of her arguments, I’m glad that Erin Biba, at Wired Magazine, chose to touch upon (with her limited perspective) some of the issues with hearing aid technology and their limitations, perversely high cost, and evolving stigma. The article is part of an expose called “Why Things Suck: The 33 Things That Make us Crazy”. I gave a response on at the magazine. I encourage anyone to share their thoughts and its nice to see the media taking on this issue when it does.

Interestingly, Wired Magazine has other articles that praise hearing device technology instead of trashing it. Like this one on hearing aids and their ability to work with MP3 players and phones. Or check out this report touching on how hearing aids reduce the effort that the brain expends understanding speech in noise.

 “U.S. health care spending growth accelerated slightly in 2006, increasing 6.7 percent compared to 6.5 percent in 2005. Total health expenditures reached $2.1 trillion, which translates to $7,026 per person or 16 percent of the nation’s Gross Domestic Product.” Thats higher than any other country.

I turned 30 just recently and entered a new epoch of my life. A letter from my health insurance provider -Blue Shield- ushered in this new era. I opened the letter and received the exhilarating news that my monthly premium was being raised from 50 to 73 dollars a month (the cheapest, highest detuctible PPO plan). Apparently the age 30 has entered me into a slightly unhealthier and riskier statistical health category. Basically, the insurance is there if I have to face a catastrophically expensive health problem and I need it there for that reason. That price comes with a hefty deductible of $4,000 and offers me some bare bones services. 73 dollars a month is still some dirt cheap insurance compared to what I see people paying out there. I should consider my self lucky.

Hearing Aid Coverage: 0 dollars. What Hearing Aids mean for my overall mental state of being, health, work productivity: about $6,000 every 3 years but really just a Priceless (no, not my Visa card) health benefit. There is no sound argument for the aids or hearing services not to be covered by my health insurance. I can’t think of any one tangible thing (product I pay for) that means more to my quality of life- not a car, not a house, not my lovely surfboard.

I don’t qualify for what little coverage for hearing aids is out there: California State Employee coverage, Medicare, Medicaid, or Vocational Rehabilitation.

The United States health care system fails me. If I’m broke, they will fix me. Otherwise our byzantine care is utterly useless.

Several states have insurance mandates for hearing aids. Good for them. This is a start. The states include: Connecticut, Kentucky, Louisiana, Maryland, Minnesota, Missouri, Oklahoma, and Rhode Island.

Rhode Island gets props for having first mandate and the most comprehensive- including coverage for both children and adults. God forbid parents of hearing impaired children could afford to have their kids fitting with hearing aids along with adults. The evils of socialized medicine!

Befitting of the byzantine beauracracy of the United States and the quagmire that is called health insurance- requirements vary by state for age covered, amount of coverage, benefit period, provider qualifications, and type of hearing loss.

Let the senator of your State know what you think about this issue.

My outstanding audiologist for 15 years, Gustav F. Haas, Ph.D., left his business rather unceremoniously and left me this sobering communication:

The Hearing Center Update, July 2001

“After 19 years at this and the Hopkins Ave. [San Carlos, Ca] location, the Hearing Center will close on approximately August 15th. I would have liked to see an experienced, knowledgeable, and responsible person take over this office, but a search of over three years as proved fruitless. Development in Managed Care have succeeded in reducing this business to the point where its not possible to make a living. At the same time, expenses have increased (rent more than doubled last October). It is thus not surprising that of a number of people who showed interest in this practice, no one has followed through. Whether or not this will be true of all individual health care practices remains to be seen, but the trend has been for consolidation into larger organizations, often with less personal attention to patients.

… I have enjoyed working with you and thank you for your past support. I truly regret not being able to continue to provide an office at this location, and would especially like to thank those of you who referred others to us. Unfortunately this was not enough; I could not compete with the marketing of large HMO’s and did not want to do fictitious “25% off” promotions.”

Recently, while going through some old unsorted papers I had kept in a box, I came across this communication. Finding this letter again was a catalyst to starting this site..

You can find Gustav F. Haas at www.hearingadvice.org. He provides consulting for consumers and professionals. The service for consumers is intended for current or prospective hearing aid users looking for advice free from any bias for or against specific manufacturers.

Michael Chorost, a cochlear implant user and avid supporter of its use, recently gave a speech at Gallaudet University. Michael is a deaf person who grew up using the English language. He was anxious about giving a speech at Gallaudet:

Before I came here I was worried that I would feel like a minority, and a disliked one at that. I was especially anxious because my book is clearly supportive of cochlear implantation. Yet I felt warmly welcomed on campus, and I was surprised to see that a substantial percentage of the students had cochlear implants.

Michael touched upon some very interesting issues facing the deaf and hearing impaired communities. One these, concerning race, class and hearing technology caught my attention-

… other studies, which I’ve discussed at length in chapter 8 of my book, suggest that in the U.S., access to cochlear implants is still very much conditioned by race and class. You might think, for example, that African-Americans, being 12% of the U.S. population, would also be 12% of the implanted population. In fact, they’re only 4% of the implanted population. And that’s despite the fact that minorities have a higher incidence of disabilities than the Caucasian population. These numbers suggest that most white and wealthy kids will get implants and live entirely in the hearing world, while many nonwhite and poor kids will become signing deaf. The conclusion I draw in my book is that not only is the signing deaf community likely to become smaller, it will become more multiracial, and unfortunately, more economically disadvantaged.

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    One of the most talented and eclectic bass players out there, Les Claypool, lost half his hearing in one ear during a diving accident in 1993. Les Claypool grabbed my attention more than a decade ago with his funky finger tapping and flamenco style strumming in the band Primus. Since then he has worked on an array of interesting projects with bands like Oysterhead, Les Claypool’s Fearless Flying Frog Brigade, and my favorite Colonel Claypool’s Bucket of Bernie Brains. If you haven’t heard his music you should check him out.

He mentions his hearing loss in an interview on JamBase.com:

“Moving back to you personally, I believe I read that you lost hearing in your left ear, is that correct?

In my right ear. Some of my high frequency from a scuba diving accident.

Does that affect your bass playing in any way?

Not really. It affects me socializing with large groups of people. It’s hard for me to discern syllables sometimes. Like if there are a lot of people talking, especially woman’s voices, I just can’t hear. So I try to kind of aim my left ear at people.”

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