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…

“Both the audiologist and the ENT felt they were not necessary at this time even though she plays radio very loud and TV as well.”—Parent of 16-year-old female with otitis media up through age 11 years requiring PE tubes. Has hearing loss now in low tones and described as having moderate hearing loss

“When my son was about 7, I had him developmentally tested. This was just a precaution as a result of home schooling. He failed the hearing exam. We were referred to an audiologist who also failed him. So we went to his pediatrician. She tested him again in the office using her little machine, which she swears is very accurate. Her test came back with no problems whatsoever. My son is now 10 and he still complains of not being able to hearing some things. The only thing [the pediatrician] did, however, is to keep testing him with her machine and nothing ever comes back bad, and she has refused on two different occasions to give me a referral to go back to the audiologist. She also has stated that he’s just a boy, and he’s probably ignoring us, or even having selective hearing. The reason for not getting amplification is his doctor does not acknowledge he has a problem.”—Parent of 10-year-old boy with a reported mild hearing loss who cannot hear speech across a room; has had behavioral problems at school and difficulty with family relationships

“Couldn’t understand anything she said. Doctors said was nothing to worry about. When she still could not be understood at the age of 4, we knew she needed help. Her doctor still would not help us. She started Pre-K, and the teachers and counselors requested that she be tested. That’s when we were able to get her help. We have sought all methods of help with her hearing. All the doctor specialists, audiologists, and other experts, have told us hearing aids will not work for her. She has no damage to her eardrum. She has a blockage in her ear canal. They will not do surgery. She has been in speech and hearing classes from Pre-K to first grade. She is going into 2nd grade and her speech has improved but not her hearing”—Parent of 8-year-old female with moderate hearing loss who can not hear normal speech across a room “At approximately 18 months of age I noticed my daughter walked like a drunken sailor. She did not respond if I stood behind her and talked to her. I took her to our pediatrician’s office. At first he brushed me off. I persisted until he did a basic audio test. She was flat line—the test would have had a bell curve if she could hear. He referred me to an ENT doctor.”—Parent of 9-year-old female with mild hearing loss requiring speech therapy

“My son was having a speech problem at age 3 and the doctor wanted to check all aspects; he was found to have a high frequency loss in his left ear. The doctor said hearing aids would not help this type of hearing loss.”—Parent of 18-year-old male with high frequency moderate hearing loss requiring school adjustment and speech therapy most of his childhood

“Loss of high pitch in left ear and was told only old farmers have had this hearing loss. Nurse in school informed me. Was told that hearing aids would not help. He adjusts himself if unable to hear.”—Parent of 14-year-old boy with high frequency hearing loss

In pre-kindergarten she was tested and failed the school hearing test. We immediately sought the advice of her pediatrician, who retested her. She failed the second test and we were asked to go to a specialist. The specialist did a series of tests and determined that her hearing loss was minor and that a hearing aid would be too costly for us when she really didn’t need one yet. The specialist suggested yearly reviews to track the problem. If the day comes when she will benefit due to more loss of hearing or new technology, then we will fully investigate our new options and make an informed decision.”—Parent of 10-year-old female with bilateral hearing loss described as mild

“Discovered hearing loss in 4th grade by teacher who suggested a hearing test. The audiologist diagnosed that there is some loss in both ears, more in the right. “Th” and “ch” sounds are not heard. Asked for an annual check-up. Aids would not make a significant difference at present times.”—Parent of 15-year-old female with moderate high frequency hearing loss

Stigma…

About a third of these parents mentioned that the stigma associated with wearing hearing aids impacted their decision not to wear hearing aids. “Stigma” means issues like: (20%); peers make fun of the dependent with hearing aids (19%); people will treat the dependent differently (19%); they are too noticeable (18%), and/or make the dependent look disabled (17%) or mentally slow (14%).

“The stigma attached to wearing a hearing aid has been negative for C___. She does not like to admit there is anything wrong. It’s not cool to wear a hearing aid in her opinion. Hearing aids are really only for old people.”—Parent of 21-year-old female who had childhood ear infections

“His hearing loss is not too severe. He has special seating in school which helps him pay attention more. It’s difficult with new relationships. We must tell people to speak to him face-to-face or on left side. Family was saddened by many surgeries but we speak slow and clear, and louder than normal. He gets very frustrated often. He doesn’t want hassle at this time with hearing aids. Maybe when young adult he may change mind.”—Parent of 8 year old described as having moderate hearing loss in one ear

“Teacher and audiologist didn’t want to make him uncomfortable with learning and made suggestion that, as long as the special seating in classroom was helping, then a hearing aid would not be needed.”—Parent of 18-year-old male with mild hearing loss in one ear and moderate in the other

“The doctor indicated that hearing aids were not an option since her hearing loss wasn’t serious enough to put him through self-esteem problems at this time. He speaks very loudly and can tend to get in trouble at school because of it.”—Parent of 9-year-old male with a 10% loss in his right ear due to damage from prolonged high fever

Financial Considerations…

Nearly 3 in 10 respondents indicated that financial or value considerations impacted their decision not to get hearing aids for their dependent; 22% indicated they could not specifically afford hearing aids.

“We have not gotten hearing aids. I did look into them. The cost was none that I could afford. But he has done very well without them.”—Parent of 14-year-old dependent with otitis media at age 4 and 8 years, and previous surgeries for PE tubes

“Insurance does not cover cost and doctor has not recommended.”—Parent of 14-year-old boy with moderate hearing loss and inability to hear normal conversation across a room

“We stopped at a hearing store one day when she was about 7 or 8 years old. They were offering free testing. Laura threw a big fuss at first but finally agreed. We were told her loss was about 20% in her right ear and 35% in her left ear, but our insurance didn’t cover the devices then, and she hated the idea so much we decided not to buy them.”—Parent of 16-year-old female with otitis media as a child believed by parent to result in eardrum scarring and hearing loss

“When we moved to El Paso, the doctors have told us that the problem was a minor one and did not require any medical treatment or hearing aids. It is my opinion that the military did not want to pay to look at her and this is why were told it was a minor problem. We will be transferring to Hawaii and were told that they have a better track record and will actually try to help our dependent to hear.”—Parent of 7-year-old female with bilateral mild hearing loss requiring front-row seating with attempts to get her FM at school. The school audiologist told the mother it was a genetic defect and her hearing was comparable to that of a 70-year-old “I do not like the way they look in people’s ears and some are so expensive too. It affected my child’s performance at school because she would have to lipread to understand what the person is saying to her.”—Parent of 6-year-old female with moderate hearing loss unable to hear speech across a room

What do my readers feel and think when they read these letters? There is obviously a maelstrom of questions and issues that these letters raise..

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