WEST LAFAYETTE, Ind. (AP) - Nine-year-old Zain Hafeez hears the world differently.
Imagine listening to someone with 12 cotton balls stuffed in his mouth and speaking softly with a pillow over his face. That’s what Zain hears.
The West Lafayette boy was diagnosed with moderate-to-profound hearing loss in both ears when he was 3. It was unexpected because he’d passed an earlier hearing screening.
Still reeling from the shock of Zain’s diagnosis, his mother, Shireen Hafeez, was forced to absorb a second blow - the family’s health insurance company refused to cover the cost of hearing aids. The insurer said his hearing loss was “not a medical condition” and that hearing aids are “more cosmetic,” Hafeez told The Indianapolis Star (https://indy.st/1hSbyKT ).
While Medicaid and other programs for low-income families generally cover hearing aids for children, the majority of health insurance companies do not. And for middle-class families, such as Zain’s, that can be a costly problem.
Hafeez and her husband paid about $6,000 for Zain’s hearing aids. To keep up with technology, they will likely pay that cost every three to five years. One family consulted by The Star has already spent $18,000 on hearing aids for their 13-year-old, with more to come.
“It’s so frustrating and infuriating,” Hafeez said. “It’s unforgivable that so many families are needlessly struggling. … It should not be a privilege to be able to afford hearing aids.”
State legislators passed a bill earlier this year that requires the State Department of Health to determine the number of children who are hearing impaired and estimate the cost of either a state program or mandate that would require health insurers to cover hearing aids.
At least 20 other states require health insurance plans to pay for hearing aids for children, according to the American Speech-Language-Hearing Association. The requirements vary state by state.
However, not everyone supports such a move. Michael Ripley, vice president of health-care policy and workforce safety with the Indiana Chamber of Commerce, said he sympathizes with people who struggle to pay for hearing aids, but feels a state mandate would be costly and ineffective for many of those who need it.
He said the mandate would not affect self-insured plans, which means roughly 70 percent of the marketplace would not be affected.
There are roughly 2,500 children with hearing loss in Indiana school systems; about another 200 children are identified every year through the newborn testing process.
Not every child with hearing loss can benefit from hearing aids. But, for those who can and choose to use them, the financial barrier to getting such devices can have significant implications.
Children who don’t develop language - be it spoken or expressive - may have difficulty reading, fall behind in school and have delayed social skills.
“I’m very thrilled the legislature is going to consider this,” David Geeslin, superintendent and CEO of the Indiana School for the Deaf, said through an interpreter. “Our community is so diverse. You can’t define it (deafness) in one person. … But the quality of life is really what counts, I think.”
Greenwood resident Lisa Kovacs said advancements in hearing aid technology have improved the quality of life for her 13-year-old son Anthony.
At 11 months old, Anthony was diagnosed with severe hearing loss. Kovacs and her husband, Brian, decided hearing aids were the best option for him.
Anthony’s first set of hearing aids was covered by Indiana’s First Steps program, which helps children under 3 who have, or are at risk of, developmental delays. But since then, the family of six has spent roughly $18,000 on hearing aids.
“It’s so absurd to me that we don’t cover hearing aids, because we work so hard to test every single child to make sure we test their hearing at birth,” Lisa Kovacs said.
Indiana law requires every newborn to undergo a hearing test before leaving the hospital, or within one month of birth. Babies who don’t pass the initial test are referred for follow-up testing.
“We recognize in our state that kids are being identified very early but still not reaching school with the language skills that they need that are so necessary for learning,” said Gayla Hutsell Guignard, director of Indiana’s Center for Deaf and Hard of Hearing Education. “We have a gap.”
Hutsell Guignard said there is a shortage of providers who have the equipment and experience to fit hearing aids for very young children.
Naomi Horton, executive director of the nonprofit Hear Indiana, said most children ultimately receive hearing aids, but they may be old, intermittent and incompatible with current technology.
Her organization created a program last year to help families pay for hearing aids. Between September and December, it provided 11 families with such devices.
Horton said the program is meant to be a “Band-Aid” until state legislators pass a health insurance mandate.
Susan Pisano, spokeswoman for America’s Health Insurance Plans, said there already are thousands of laws throughout the U.S. that mandate specific health insurance coverage. America’s Health Insurance Plans is a national trade association that represents the health insurance industry.
“The cumulative impact of all of these laws has actually made health insurance more expensive and put it more out of the reach of individuals and businesses,” Pisano said.
Indiana currently requires health insurers to offer employers coverage for surgical treatment of morbid obesity. It does not require employers to actually provide it. However, state law does require employers to provide coverage in more than 20 categories, including diabetes treatment, autism, AIDS and HIV, orthotic and prosthetic devices and breast reconstruction if a mastectomy is covered.
Some mandates vary based on the type of insurance purchased. And again, none of those mandates applies to self-funded plans, which account for a majority of health insurance in Indiana.
Shireen Hafeez said her son’s hearing aids are prostheses he needs to survive. She doesn’t understand why there is any debate about requiring insurance companies to cover the devices.
“It’s not a moral dilemma,” she said. “The only dilemma is why hasn’t this been implemented?”
Other parents interviewed by The Star said they hoped Indiana would adopt a health insurance mandate to cover children’s hearing aids.
Zain Hafeez said he hoped something would change so other kids won’t have to live “in the quiet.”
“Hearing aids help kids learn,” he told a Senate committee earlier this year. “They have helped me to hear the teacher, sirens and fire alarms. They help me hear my friends when I am playing with them, and listen to the TV, or hear my iPad and music. … Kids that don’t get them are going to be cheated from life.”
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Information from: The Indianapolis Star, https://www.indystar.com
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