Joyce Shen was devastated when doctors said her firstborn, Emory, hadn鈥檛 passed her newborn hearing screening. Emory was diagnosed with profound sensorineural hearing loss in both ears as an infant, meaning sounds are extremely muffled.
But Shen and her husband, who live in Ontario, California, faced a horrible situation. Without intervention, they were told, their baby daughter鈥檚 hearing impairment would prevent her from acquiring age-appropriate language skills and likely leave her with developmental problems affecting her education. Pediatric hearing aids can look like modified earbuds and sometimes come in pink, blue, and other bright colors. The ones Emory needed can cost more than , and she would require a new pair about every three years as her ears grow. But the family鈥檚 work-based insurance does not cover those costs.
Shen said she knows all too well what鈥檚 at stake for her daughter, who was born in February 2023. 鈥淚f she had hearing aids, I could start all the speech therapy right now, get her access to most of the sounds. But right now, I can鈥檛 do anything. Just waiting.鈥
The family is not alone in this predicament. California and 17 other states don鈥檛 require private insurance plans to cover hearing aids for kids, so many don鈥檛. But about two or three of every 1,000 babies in the U.S. are in one or both ears, according to the National Institute on Deafness and Other Communication Disorders.
鈥淵ou have to learn to hear before you can learn to speak, and we all speak how we hear,鈥 said , a Los Angeles audiologist who co-chairs the volunteer coalition .
Grassroots action, often led by mothers, helped steer legislatures in 32 states to pass bills that would require private insurance to cover hearing aids for children. Vermont, Virginia, and Washington are the most recent.
The fix, however, is not always an easy one. Bills died at the end of the most recent legislative sessions in New York and Hawaii. And, in California, where only enrolled in commercial plans have coverage for hearing aids and services, Democratic Gov. Gavin Newsom in October that would have required such coverage.
鈥淭here鈥檚 real disappointment among professionals and our California families,鈥 said Phillips.
Newsom, who, by the end of 2023, faced a projected , explained that the bill would 鈥渋ncrease ongoing state General Fund costs鈥 and 鈥渟et a new precedent by adding requirements that exceed the [state鈥檚] 鈥 under the Affordable Care Act. Adding kids鈥 hearing aids to the essential benefits package would trigger a provision of the ACA that requires state coffers to offset the additional expense. Newsom was wary that this 鈥渃ould open the state to millions to billions of dollars in new costs鈥 for expanded coverage.
Nationally, there鈥檚 pressure to pass such state mandates because health plans often don鈥檛 cover hearing aids for kids, . , a pediatric ear, nose, and throat physician at the University of California-San Francisco Benioff Children鈥檚 Hospitals, said hearing aids should be covered the way glasses and tooth fillings are.
Efforts on the ground suggest the push has slowly been gaining momentum.
Jocelyn Ross of Columbia, South Carolina, founded in 2010 after her daughter Alyssa was diagnosed with congenital hearing loss when she was just a few months old. Although South Carolina has yet to mandate coverage of hearing aids, the coalition has become a model for other such advocacy groups across the nation. was launched a year later by Kelly Jenkins, an Atlanta mom whose daughter has worn hearing aids since she was 18 months old. Legislation requiring the state鈥檚 private insurers to cover kids鈥 hearing aids . Advocates in Ohio and Michigan are also pushing for legislative relief.
Though progress in various states is coming in fits and starts, Newsom鈥檚 veto in progressive California was surprising.
Stephanie Wittels Wachs, who founded , has two children who are hard of hearing. Her organization helped push the 2017 passage of kids鈥 hearing aid legislation. But when she moved from Houston to California in 2020, she was 鈥渃ompletely shocked鈥 to learn no such mandate had been approved there. 鈥淐alifornia usually leads the way, and we are falling behind some more conservative states that have prioritized pediatric hearing loss,鈥 she said.
Newsom鈥檚 veto was especially surprising to many advocates because in 2019 he had created the , or HACCP, which offers supplemental coverage of up to $1,500 for hearing aids for families earning up to 600% of the family poverty threshold. Last year鈥檚 legislation would have replaced that program, which has proved so far to not be particularly successful, since it began accepting patients in 2021. Provider participation in HACCP is also low. Meanwhile, it鈥檚 estimated that 20,115 California enrollees under age 20 need hearing aids and don鈥檛 have coverage for them, according to a 2023 report by the .
鈥淲e do a great job of diagnosing these kids, we really do,鈥 said Daniela Carvalho, Emory Shen鈥檚 audiologist at Rady Children鈥檚 Hospital-San Diego. 鈥淎bout more than 99% of kids that are born here are screened. But how can that be a good thing if we鈥檙e not following up at six months and giving them what they need to be able to hear? It makes no sense.鈥
In November, after nearly 10 months, Emory was enrolled in HACCP. Soon she was given loaners, and then she received her own hearing aids in December.
鈥淲e talk to her about everything we are doing,鈥 Joyce Shen said. 鈥淲e tell her about her highchair and her food and the spoon and bowl. Just anything to help develop her speech.鈥
