Special to the Journal
ATLANTA, Ga - Imagine that your newborn baby has just been diagnosed with hearing loss. Now imagine finding out that you won’t be able to give him the hearing aids that would allow him to hear, talk, read, make friends and excel in school, because your insurance company won’t cover them.
Far too often, that is the devastating news that Georgia parents receive because while insurance companies cover newborn hearing tests, most won’t cover the cost of the hearing aids these children desperately need.
Seven-year-old Hayden McKenzie is one of the thousands of Georgia children suffering in silence. Three years ago, Hayden was diagnosed with a disease that caused hearing loss in both ears. Both of Hayden’s parents work full time, which puts their family of five above the poverty line – meaning they don’t qualify for Medicaid, which would cover Hayden’s hearing aids. The McKenzies have medical insurance through their jobs, but it does not cover the $6,000 price tag of a pair of hearing aids, nor does it cover the cost of replacement every few years as Hayden grows. So Hayden has mostly learned to do without, which means missing out.
“He wants to be a part of this world,” said Hayden’s mother Amanda. “And I just saw him becoming very withdrawn. He was afraid to ask questions at school, afraid to do anything wrong, afraid to tell anyone he couldn’t hear. It broke my heart.”
Finally out of desperation, Hayden’s parents took a dramatic step. They bought him “game ears”, the headphones that hunters sometimes wear, so he could try to pick up on what happening around him. The unfairness of the whole situation is not lost on Hayden’s mother Amanda.
“Why on earth would you not do this, especially for kids,” Amanda said. “They pay for contacts, glasses, every kind of prosthetic, knee braces, but not hearing aids? Really? And not for kids?”
Experts agree that hearing aids should never be treated as a luxury, only accessible to wealthy families. “Hearing amplification devices are so important for children with hearing loss,” says Hayden’s physician Dr. Wendell Todd an Otolaryngologist with Emory Healthcare. “They are developing their language and learning. If you deprive them of the chance to hear, you are essentially slamming the door on their potential and tragically limiting their possibilities, with lifelong consequences.”
Sadly, Hayden’s story is not unique. With 12,000 children diagnosed in the U.S. each year, congenital hearing loss is the most common birth defect according to the American Speech Language Hearing Association. The additional cost of insurance coverage for the hearing devices is only 38 cents per year per insured person in Georgia. However, children who do not receive early intervention for hearing loss cost schools an estimated $420,000 and are faced with overall lifetime costs of $1 million in special education, lost wages and health complications according to the Better Hearing Institute.
In Georgia, a group of parents and legislators are working to stop that cycle. Kelly Jenkins and Sara Kogon met at the Atlanta Speech School where their 3-year-olds are enrolled. They were shocked to learn that their children’s hearing aids would not be covered by insurance. So in 2011, they started “Let Georgia Hear” along with several other concerned parents – an organization dedicated to passing legislation that would give insurance coverage for hearing aids to all of Georgia’s hard of hearing children.
“It’s appalling that any parent should have to tell a child that even though the technology exists to help them hear, that this won’t be available to them simply because they can’t afford it,” says Kelly Jenkins whose daughter Sloane is now in a mainstream classroom thanks to her hearing aids and the early intervention she received at the Atlanta Speech School.
There are currently only 20 states that require insurance companies to pay for hearing aids for children. But it’s going to become a hot issue this year with as many as eight states taking it up for a vote. Kelly Jenkins and Sara Kogon are hopeful that Georgia will lead the charge. The Georgia bill is being introduced by State Representative Edward Lindsey (R-Atlanta) in the current legislative session.
“This is common sense legislation that will have a positive impact on Georgia’s children,” said Rep. Lindsey.
Kelly and Sara plan to knock on every door until they get the legislative backing necessary for this bill. And they are banking on the support of hundreds of other families with hard of hearing children, like Hayden McKenzie, who have contacted them and pledged their support when they go to the Capitol this spring to tell lawmakers in person how much their hearing aids have changed their lives.
You can follow the fight to “Let Georgia Hear” and learn how to help them by contacting your legislator at www.letgeorgiahear.org.