KC Cares: Hear2Help

KC Cares

Hear2Help

By Beth Lipoff

Last April, when Whitney Weber noticed that her toddler, Henry, wobbled and fell over more than his older brothers had at the same age, she took him to the doctor.

What seemed like a routine appointment turned into an ambulance ride and emergency surgery on a cyst on Henry’s brain. In the midst of all that, doctors told Weber Henry had hearing loss that would only get worse. He needed hearing aids in both ears.

The situation was heartbreaking for Weber—and there was another shock in store.

“All at once we had the expense of brain surgery, and then they come and tell us hearing is not covered under insurance, which is absolutely crazy to me,” Weber says. “We had Cigna, and they do not cover anything at all. You would think health insurance—your ears are part of your health, but they didn’t offer anything.”

Because their income put them just above the assistance threshold, the Webers couldn’t get a grant from the hospital to help. Between the brain surgery and the hearing loss, the bills were piling up.

That’s when Hear2Help stepped in. Started in 2017, the non-profit works with families to pay for hearing aids.

Within a month, Henry was fitted for his hearing aids.

Terri Steinlage, co-founder and executive director of Hear2Help, started the organization when she moved to the Kansas City area from Oregon.

Insurance companies are required to cover childrens’ hearing aids in 20 states. So, after her move, Steinlage was amazed to find that her 2-year-old daughter’s hearing aids wouldn’t be covered by their new insurance.

Steinlage wanted to help other people facing the financial double-whammy of care for a child with hearing loss and the large expense of hearing aids.

A set of hearing aids might cost between $2,000 and $4,000, and it’s not a onetime purchase.

“If the child takes good care of them, they don’t get dropped in water, [and] the dog doesn’t eat them, typically hearing aids will last four to six years,” Steinlage says.

That’s just for the piece that fits behind the ear. The earmold, which goes where you’d put an earbud, sometimes has to get changed every few months as a child grows. That’s another several hundred dollars a pop.

Additionally, Hilary Schmidt, a doctor of audiology at Children’s Mercy, says that kids should have new hearing aids every four to five years.

“A 2-year-old in a daycare center has different needs than a second grader who’s in school all day,” she says. “They need technology that can evolve with them.”

Schmidt adds, “It’s definitely a financial challenge for our families that they usually don’t have any way to prepare for. Hearing loss can’t be diagnosed until you’re born.”

Insurance denials for hearing aids are some of the most common, she says—only 25% of her patients have any type of related coverage. For a child, not getting hearing aids when they need them can have serious consequences down the road.

“We learn to talk the way that we hear, so if you have any deficit where you can’t hear, you’re going to have trouble learning how to talk. Untreated hearing loss leads to academic problems. You’re more likely to fail a grade,” Schmidt says.

According to Steinlage, if a child passes age 2 or 3 without hearing aids, chances of them learning to speak drop significantly. In the best case scenario, a child should be fitted for hearing aids before 6 months of age.

Schmidt calls Hear2Help “instrumental” in helping families access hearing aids on the right timeline.

“I wish more programs existed like Hear2Help to allow [parents] to feel and take the time they need without worrying about financial stress,” she says.

Missouri joined the list of states that mandate coverage Jan. 1, 2022. A new law passed last summer stating that all health plans existing after that date must “provide coverage to children under 18 years of age for those hearing aids which are covered for children receiving benefits under MO HealthNet.”

MO HealthNet, Missouri’s Medicaid program, allows children to get new hearing aids every four years. In practice, however, Schmidt hasn’t seen much change.

“[Private insurance companies in the area] still continue to deny coverage for most patients,” Schmidt says.

If you’ve ever been frustrated by trying to get insurance coverage for something vital, you’ll know how Schmidt and Steinlage feel.

“Pediatric and adult audiology are lumped together,” says Schmidt. “Insurance companies see adult hearing aids as a quality of life [item] and not a medical necessity. Pediatric audiologists like me will argue until they’re blue in the face that it’s not the same, but insurance companies just don’t see it that way. It can be really challenging for unilateral hearing loss, when you only have it in one ear. Most often, insurance companies will deny those because they say, ‘You have one good ear. You don’t need two.’”

Kansas does not have a law mandating coverage. There is a program called the Kansas Hearing Aid Bank, where kids can get a hearing aid on loan until they’re 3 years old, but parents still have to pay for the earmolds. The program also doesn’t cover older children.

Hear2Help has funded hearing aids and assistive technology for 39 kids from Kansas City metro and across the state of Kansas with money from grants and donations. They keep the application simple at just one page. The aid they give does depend on the family’s financial resources and the impact the payment will have, but typically, Steinlage says, they’ll help anyone 21 or under with a household income under $100,000.

Learn more about Hear2Help and find resources related to hearing loss at www.hear 2helpkc.org/resources.

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