When Jagger Winkler lost his hearing to meningitis at 17 months, his parents knew they had to act fast. The inability to hear impedes a child’s ability to acquire spoken language, and the Winklers weren’t willing to pay that price as a result of Jagger’s hearing loss. They decided to invest time and money in a solution.
“It’s a financial drain; there are no ifs, ands, or buts,” says Ellen Winkler, Jagger’s mom. Jagger, now 7, was fitted with cochlear implants and then received auditory-verbal therapy for years afterward—requiring weekly air travel to the therapist. Yet the family feels there was simply no other alternative: they wanted to do everything in their power to get Jagger access to sound.
On the other side of the coin, cross-country motorcyclist Ellana Clarke believed she had no financial options to get her hearing loss assisted. For 28 years, Clarke had been a long-distance motorcycle rider, on the road two to three months at a time, mostly by herself. “I never met a stranger,” she says, describing her outgoing personality. Her gradual slip into deafness changed everything. She began to fear for her safety, and had to stop riding. “I found myself changing from a very outgoing, adventuresome woman to a recluse,” says the Texas woman.
When she finally lost all hearing in 1998, she was in an untenable position. Compounding Clarke’s declining quality of life was the knowledge that she couldn’t pay out-of-pocket for cochlear implant surgery. “I knew I would just have to be deaf the rest of my life because I could never afford an implant on my own,” she says.
Even the cost of hearing aid batteries is too much for some families. Many insurance plans won’t pay for hearing aids, let alone the batteries that power them. Typically, insurance plans will cover cochlear implants, but they often require a six-month trial with hearing aids before approving the surgery; sometimes families can’t afford the hearing aids, even for that trial period.
What can be done? Parents of children with hearing loss, as well as adults with hearing loss and their loved ones, can find success by getting educated about the options, being creative, and standing up for themselves.
Learn about the laws in your area that govern health insurance provisions. Some states now mandate that insurance plans cover hearing aids for children, but this can still vary depending upon whether or not your employer is self-insured. Do the research; talk to experts. Local hearing-loss organizations such as the Hearing Loss Association of America, and others, can help you find expertise and even connect you with other people who’ve been in the same boat.
Winkler has a simple suggestion: “Be organized,” says the small business owner and mother of three. She recommends families document everything and keep all records in one place. “Be vigilant with your insurance company,” Winkler continues. “My husband sat down at the doctor’s office and said ‘Okay, dictate the letter that says my child needs this surgery immediately.’ And it happened.” Jagger received his implants a mere 10 days after he was diagnosed with hearing loss.
Clarke, a retail saleswoman in the Lone Star state, lived with her profound deafness for 14 years, until she met a man who had cochlear implants. “I asked him how he liked them. He said they were wonderful,” Clarke remembers. This stranger encouraged Clarke to pursue the implants and gave her the name of his surgeon. The doctor told Clarke about a local agency that could help: the Texas Department of Assistive and Rehabilitative Services (DARS). “I did nothing,” Clarke says. “DARS did all the work between the Houston Ear Research Foundation, Medicare, and my HMO. All I did was sign a few documents and wait.” In June of 2012, Clarke received her first cochlear implant, “all without cost to me.”
Just reaching out and researching the options was all it took for Clarke to hear again. Others have to get a little creative. “I went to my company and convinced them that our insurance should cover hearing aids for children” says Lewis Mazo, father of 6-year-old Alexander, who’s severely deaf. Later, the dedicated dad entered a contest and won new hearing aids for his son.
My relationships at work have blossomed. I feel my confidence coming back. I feel “worthy” again.
Solutions like these may not work for everyone, but anyone can take inspiration from this make-things-happen approach. Some people borrow money from family, work with local charities, or even hold fundraisers themselves. Others put hearing aids on a credit card; there are special lines of credit just for medical-related expenses. Some sacrifice may be involved, but do the math. Divide the cost of a hearing solution over the months it will take you to pay for it, and then contrast that financial burden with the cost in quality of life.
An animal lover who bred dogs for two decades, Clarke describes the difference implants have made in her life: “I hear birds, the rain and thunder, the wind. My kitty talks to me,” she says. She had forgotten all of these sounds. “My relationships at work have blossomed. I feel my confidence coming back. I feel ‘worthy’ again.”
For their part, Ellen Winkler and her husband believe that Jagger’s ability to hear will open doors they thought were nailed shut. ”He can be anything he wants,” smiles Winkler. “He could go to an Ivy League school; he could be a doctor, or a lawyer, or the President. He can write his own ticket.”