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Two years ago, Norm and Taunya Paxton discovered silence had crept into their home — a silence that would forever change their life: They learned their middle child, Chance, was profoundly deaf.
"It's like being thrown into the deep end of the pool and not knowing how to swim," Norm Paxton said.
The discovery left the couple flailing in their efforts to confront the mixed messages they received from doctors, the lack of coordinated support from hearing advocacy groups and what they say is the surprising indifference of the insurance industry.
"There's absolutely no guidance," said Taunya Paxton. "It was worse than shooting in the dark."
Beyond coping with a new-found disability, the Paxtons were left to discover that hearing aids are not considered "medically necessary" by most private health insurance plans. Rather, they are largely viewed as "cosmetic" or an educational device best left for parents to pay for on their own.
Norm Paxton did his research, and while he found many plans offer secondary insurance or riders that cover dental, vision or even erectile dysfunction medication, hearing aids don't make the cut.
That can be problematic when the devices range from a few hundred dollars to as much as $7,200.
"Part of the industry's denial process is to look at it and say it is a cosmetic issue rather than a sensory issue," says Rich Harward, the state health department's manager for hearing, speech and vision services.
"Most plans pay for eyeglasses; very few pay for hearing aids," Harward said. "By exception, there are some out there who have helped, but that is by exception and by appeal."
The Paxtons, covered under Intermountain Health Care at the time, exhausted their appeals, having been told by IHC officials early this year it would be "irresponsible" for them to modify their plan to include coverage.
But IHC's refusal of coverage is not out of the ordinary.
"There just has not been the pressure for the major insurance plans in Utah to address it," said Harward. "There has not been enough of a groundswell."
Chance, with his bright blue eyes sporting long little-boy lashes, was not diagnosed with any hearing disability at birth.
As best his parents and doctors can guess, they believe a viral infection at the age of 1 left him profoundly deaf.
To the Paxtons' dismay, they found hearing aids were excluded in a four-line paragraph in the back of their benefits handbook — words that had escaped their attention before.
"You never think you are going to have a child who is deaf," Norm Paxton said.
Chance's diagnosis came at an already difficult time for the young parents.
"We thought we were already at the height of our stress level," Norm Paxton said. "We had just built our home, had a newborn baby and were living with a 25 percent pay cut that would last 2 1/2 years."
The stress would escalate as the Paxtons sought to find the best help available for their son to mitigate the effects of his disability.
What they eventually found was a hearing aid that offers digital sound processing programmability, allowing different frequencies to be amplified at different levels.
Certain extraneous noises — or background sounds — can be programmed down low, while critical sounds waves can be amplified. With such a hearing aid that contains 16 different settings, Chance's hearing can be brought up to a mildly deaf level, and now Chance — who turns 5 today — is speaking and "owns" several hundred words, able to string together sentences in common conversations.
Each of his hearing aids cost $2,000, but it's been an expenditure the couple made because they felt they had little choice.
"At his age, every month is critical," said Taunya Paxton. "It's not something you can put off for a few years just because you don't have the money."
Experts who work with young hearing-impaired children agree.
"Technology has made a world of difference to hearing-impaired kids," said Marilyn Madsen, director of the south region of the Utah School for the Deaf and Blind.
"By age 5, children have developed all the basic syntactical structures of English. If the child has not had the opportunity to hear that, if the child has not had that benefit, language development is very, very, delayed."
Those delays, Madsen said, can lead to larger societal costs down the road, from requirements that more money be pumped into special-education resources in school districts to an increased likelihood that as a hearing-impaired adult, government assistance is necessary.
"The need for these devices is not just significant, it is critical," Madsen said. "It is a cheaper thing for society in the long run if we can get them amplified and on a track where they can get into regular classes."
Help is available for those who qualify.
At least three taxpayer-funded programs operating in Utah believe hearing aids to be a medical necessity and will either purchase them outright or help families afford their cost.
Medicaid, the state's Children's Health Insurance Program and Harward's bureau, also administered through the state Department of Health, offer some type of assistance as do many private foundations.
Although the Paxtons exhausted every avenue, they were ultimately deemed ineligible for government assistance or help from private foundations because of income level.
The experience has left the Paxtons seeing a system of haves and have-nots, where hearing assistance is deemed more critical for some people.
"I'm not saying Medicaid shouldn't pay for hearing aids," Norm Paxton said. "I think it is great they do. But I feel if it is good enough for the federal government to think it is important, shouldn't insurance companies as well?"
Matt Knotts, an advocate with the Disability Law Center, said it has successfully forced government health programs to provide additional coverage for hearing-impaired children, but the battle with private insurance companies has been more difficult.
"It is an issue that can be addressed by technology, but they are not willing to do it. It continues to be overlooked. It's frustrating."
Industry critics also find it ironic and a bit disheartening that a company, Veterinary Pet Insurance, offers just over $700 per calendar year in hearing assistance for cats and dogs of owners who have bought a policy for their pet. The condition cannot be pre-existing, but eligible beneficiaries get coverage for hearing aids, tests and any necessary anesthesia.
"It's incredible," Norm Paxton said.
He and others believe the insurance plans do not offer coverage for hearing aids because:
- Private plans model coverage after Medicare, which has historically not covered hearing aids.
- The loss of hearing is considered a natural process of aging and covering that would break coverage providers.
- Hearing aids of years ago weren't that effective anyway and are largely considered cosmetic.
"I think, historically, people would get a lot of amplification from hearing aids without clarifying sound enough, so people were still struggling so much," said Katherine Evans, president of the Salt Lake chapter of Self Help for the Hard of Hearing.
"The changes we've seen recently with technology are allowing people to hear more clearly."
But with changes come cost — and those in the insurance industry view such coverage for a rapidly growing senior population with dismay and worry that covering a benefit for one population will mean covering it for all.
"The market is so incredibly price sensitive, we are being told to take away benefits rather than add them," said Kevin Bischoff, vice president of public and corporate affairs of Regence BlueCross BlueShield.
Regence, like the other major private health insurance plans in Utah, doesn't cover hearing aids.
"We have not had a lot of demand for hearing issues," Bischoff said.
While those hoping for change would like to see coverage extended to everyone, they assert that at the very least, there should be some help for children.
"That's what blows my mind," Evans said. "Why, when it is so critical for a child who is developing in language, developing in self esteem, developing in socialization, isn't there any coverage? Hearing aids could make all the difference in that child's life."
Paxton believes, in part, that a pervasive ignorance related to deafness and hard-of-hearing issues is to blame.
"There is not an awareness out there. Another parent is going to find out their child is deaf and say, 'Thank goodness I have insurance' and they will find it isn't so. They will go through the same battle we have."
By Amy Joi Bryson, Deseret News
"It's like being thrown into the deep end of the pool and not knowing how to swim," Norm Paxton said.
The discovery left the couple flailing in their efforts to confront the mixed messages they received from doctors, the lack of coordinated support from hearing advocacy groups and what they say is the surprising indifference of the insurance industry.
"There's absolutely no guidance," said Taunya Paxton. "It was worse than shooting in the dark."
Beyond coping with a new-found disability, the Paxtons were left to discover that hearing aids are not considered "medically necessary" by most private health insurance plans. Rather, they are largely viewed as "cosmetic" or an educational device best left for parents to pay for on their own.
Norm Paxton did his research, and while he found many plans offer secondary insurance or riders that cover dental, vision or even erectile dysfunction medication, hearing aids don't make the cut.
That can be problematic when the devices range from a few hundred dollars to as much as $7,200.
"Part of the industry's denial process is to look at it and say it is a cosmetic issue rather than a sensory issue," says Rich Harward, the state health department's manager for hearing, speech and vision services.
"Most plans pay for eyeglasses; very few pay for hearing aids," Harward said. "By exception, there are some out there who have helped, but that is by exception and by appeal."
The Paxtons, covered under Intermountain Health Care at the time, exhausted their appeals, having been told by IHC officials early this year it would be "irresponsible" for them to modify their plan to include coverage.
But IHC's refusal of coverage is not out of the ordinary.
"There just has not been the pressure for the major insurance plans in Utah to address it," said Harward. "There has not been enough of a groundswell."
Chance, with his bright blue eyes sporting long little-boy lashes, was not diagnosed with any hearing disability at birth.
As best his parents and doctors can guess, they believe a viral infection at the age of 1 left him profoundly deaf.
To the Paxtons' dismay, they found hearing aids were excluded in a four-line paragraph in the back of their benefits handbook — words that had escaped their attention before.
"You never think you are going to have a child who is deaf," Norm Paxton said.
Chance's diagnosis came at an already difficult time for the young parents.
"We thought we were already at the height of our stress level," Norm Paxton said. "We had just built our home, had a newborn baby and were living with a 25 percent pay cut that would last 2 1/2 years."
The stress would escalate as the Paxtons sought to find the best help available for their son to mitigate the effects of his disability.
What they eventually found was a hearing aid that offers digital sound processing programmability, allowing different frequencies to be amplified at different levels.
Certain extraneous noises — or background sounds — can be programmed down low, while critical sounds waves can be amplified. With such a hearing aid that contains 16 different settings, Chance's hearing can be brought up to a mildly deaf level, and now Chance — who turns 5 today — is speaking and "owns" several hundred words, able to string together sentences in common conversations.
Each of his hearing aids cost $2,000, but it's been an expenditure the couple made because they felt they had little choice.
"At his age, every month is critical," said Taunya Paxton. "It's not something you can put off for a few years just because you don't have the money."
Experts who work with young hearing-impaired children agree.
"Technology has made a world of difference to hearing-impaired kids," said Marilyn Madsen, director of the south region of the Utah School for the Deaf and Blind.
"By age 5, children have developed all the basic syntactical structures of English. If the child has not had the opportunity to hear that, if the child has not had that benefit, language development is very, very, delayed."
Those delays, Madsen said, can lead to larger societal costs down the road, from requirements that more money be pumped into special-education resources in school districts to an increased likelihood that as a hearing-impaired adult, government assistance is necessary.
"The need for these devices is not just significant, it is critical," Madsen said. "It is a cheaper thing for society in the long run if we can get them amplified and on a track where they can get into regular classes."
Help is available for those who qualify.
At least three taxpayer-funded programs operating in Utah believe hearing aids to be a medical necessity and will either purchase them outright or help families afford their cost.
Medicaid, the state's Children's Health Insurance Program and Harward's bureau, also administered through the state Department of Health, offer some type of assistance as do many private foundations.
Although the Paxtons exhausted every avenue, they were ultimately deemed ineligible for government assistance or help from private foundations because of income level.
The experience has left the Paxtons seeing a system of haves and have-nots, where hearing assistance is deemed more critical for some people.
"I'm not saying Medicaid shouldn't pay for hearing aids," Norm Paxton said. "I think it is great they do. But I feel if it is good enough for the federal government to think it is important, shouldn't insurance companies as well?"
Matt Knotts, an advocate with the Disability Law Center, said it has successfully forced government health programs to provide additional coverage for hearing-impaired children, but the battle with private insurance companies has been more difficult.
"It is an issue that can be addressed by technology, but they are not willing to do it. It continues to be overlooked. It's frustrating."
Industry critics also find it ironic and a bit disheartening that a company, Veterinary Pet Insurance, offers just over $700 per calendar year in hearing assistance for cats and dogs of owners who have bought a policy for their pet. The condition cannot be pre-existing, but eligible beneficiaries get coverage for hearing aids, tests and any necessary anesthesia.
"It's incredible," Norm Paxton said.
He and others believe the insurance plans do not offer coverage for hearing aids because:
- Private plans model coverage after Medicare, which has historically not covered hearing aids.
- The loss of hearing is considered a natural process of aging and covering that would break coverage providers.
- Hearing aids of years ago weren't that effective anyway and are largely considered cosmetic.
"I think, historically, people would get a lot of amplification from hearing aids without clarifying sound enough, so people were still struggling so much," said Katherine Evans, president of the Salt Lake chapter of Self Help for the Hard of Hearing.
"The changes we've seen recently with technology are allowing people to hear more clearly."
But with changes come cost — and those in the insurance industry view such coverage for a rapidly growing senior population with dismay and worry that covering a benefit for one population will mean covering it for all.
"The market is so incredibly price sensitive, we are being told to take away benefits rather than add them," said Kevin Bischoff, vice president of public and corporate affairs of Regence BlueCross BlueShield.
Regence, like the other major private health insurance plans in Utah, doesn't cover hearing aids.
"We have not had a lot of demand for hearing issues," Bischoff said.
While those hoping for change would like to see coverage extended to everyone, they assert that at the very least, there should be some help for children.
"That's what blows my mind," Evans said. "Why, when it is so critical for a child who is developing in language, developing in self esteem, developing in socialization, isn't there any coverage? Hearing aids could make all the difference in that child's life."
Paxton believes, in part, that a pervasive ignorance related to deafness and hard-of-hearing issues is to blame.
"There is not an awareness out there. Another parent is going to find out their child is deaf and say, 'Thank goodness I have insurance' and they will find it isn't so. They will go through the same battle we have."
By Amy Joi Bryson, Deseret News
