Jake Mackey was three years old before he began talking, says his mom, Angel Mackey. But it didn't seem anything to be concerned about at the time. The pediatrician told her that often children with older siblings don't talk early.
"I was thinking about taking him for a hearing test and then a week or two later, he started exploding with talk, so I didn't follow up," she said. When Jake was born in 1999, his home state of Maryland did not require hearing screening for all newborns.
Angel Mackey challenged an insurance company to pay for hearing aids for her then 5-year-old son, Jake.
He completed pre-kindergarten before his first hearing test. Although he failed it, the school nurse chalked this up to his being so young.
But after Jake failed several other hearing tests, Mackey brought him to Dupont Hospital in Wilmington, DE. An audiologist there found that Jake had a moderate sensorineural hearing loss. It turned out that he was making up for problems in communicating by lip-reading.
"I used to think it was strange that Jake would sleep a lot, even with lots of noise in the house. I would think, he's such a good baby," she said.
Testing revealed Jake's hearing loss as genetic. Mackey is missing the same gene, but her hearing loss is mild. She plans to take her older son, Alex, age 14, for genetic testing this year.
"It caught me off guard when the audiologist started talking about hearing aids," Mackey said. She was even more surprised after calling the insurance company and learning that neither hearing aids nor tests were covered.
"The more I thought about it, the more it seemed ridiculous. (Insurance) pays to have a lot of other things done," Mackey said. She began researching the issue, located ASHA's Web site, and found some answers to advocate for Jake.
Making an Exception
"I printed out tons of information from ASHA's Web site that pertained to his hearing loss," she said. A conversation with an ASHA staff member followed. "She sent me information along with some ideas to remember when you talk to your insurance company," Mackey said.
Mackey put together a letter using information from ASHA and from her employer's research plan. She noted that the insurance would pay for expensive procedures such as in vitro fertilization for at least two attempts, as well as for vasectomies and breast reduction surgeries.
"I said that while these are all important, my son's need to hear well is no less important," she recalled. Mackey pointed out that at five years of age, Jake was at an important stage in learning where information would begin to come very quickly. He would begin to develop some independence. Now 7, he is doing well in school.
"My husband and I are nurses and we could have worked overtime to cover the hearing aids, but it bothered me that the hearing of a 5-year-old child wasn't considered important," she said. The insurance company made an exception in its policy for Jake's case and decided to pay for his hearing aids.
"If somebody else were to come with a similar situation, they would take it on a case-by-case basis," she said. "I've been told that most insurance companies don't pay for hearing aids. But that doesn't mean you have to go along with it."