When Johanna Wonderly’s second daughter Cara was diagnosed with hearing loss at four weeks old, the mother from Sacramento assumed the $4,000 hearing aids her daughter needed would be covered by their family’s health insurance.

Doctors told Wonderly the aids were needed for her daughter’s healthy development. So, she was shocked when a letter from their plan at Sutter Home Plus arrived in the mail, informing her the claim had been denied. That meant the family would have to pay for the hearing aids themselves, which was difficult to do on her husband’s salary as a member of the California National Guard.

“We didn’t have that kind of money,” Wonderly said. “We began having to search for grants.”

The Wonderly family is not alone. According to the advocacy group Children Now, only 10 percent of California children insured under commercial health plans are covered for hearing aids and services. For children insured under Medi-Cal, the total cost of hearing aid benefit services, including sales tax, is only covered up to $1,510. That’s despite Gov. Gavin Newsom’s creation of an initiative called the Hearing Aid Coverage for Children Program in 2021, that was designed to address the coverage gap.

A bill pending in the California Senate known as the Let California Kids Hear Act or Senate Bill 635, aims to rectify problems with the state’s Hearing Aid Coverage program and expand hearing aid access to thousands of families across the state by requiring commercial health insurance to cover hearing aids for children.

Those advocating for the bill say requiring universal coverage of hearing aids would bridge a critical gap in the state’s efforts to detect and treat hearing loss early. In California, over 98 percent of newborns are screened for hearing loss because of programs like the Newborn Hearing Screening Program, First 5 and Early Start. But when it comes to intervention, there is little action to ensure these children are supported.

However, not all members of the deaf community believe that deafness or hearing loss is something that needs to be “fixed.” When children are given more permanent hearing devices like cochlear implants, for example, they can feel alienated from their deaf community, often without a choice.

“Many deaf children of hearing parents are forced into the hearing culture where they were not meant to be,” Michelle Jay, founder of StartASL.com writes. “This is an issue that these implants bring up. Hearing aids can be removed, but implants cannot.”

To many hearing people, deafness can be seen as a handicap, but for members of the deaf community, deafness is seen as a culture that is meant to be explored with informed consent, whether that be using hearing aids or communicating with American Sign Language.

Still, for children and their families who want hearing aids, insurance or financial capacity should not stand in the way, Children Now advocates said.

Originally presented in 2019 as AB-598, the Let California Kids Hear Act received unanimous support in the legislature, but was blocked by Newsom due to concerns that the bill was age discriminatory. The bill was replaced with the Hearing Aid Coverage for Children Program managed by the Department of Health Care Services. Despite $32.8 million in funding, the program has helped fewer than 200 of the approximately 7,000 children in California who are deaf and hard of hearing.

Mike Odeh, senior director of Children Now, said the program’s failure is due to geographic barriers and a general lack of outreach. Many parents of deaf and hard of hearing children don’t even know that the program exists. Those that do know about the program are often unable to find providers within a reasonable driving distance that will accept the program’s services.

For Wonderly, the nearest hospital that accepts the government program is over 90 miles away from their home in Sacramento. Apart from receiving a grant from the United Healthcare Children’s Foundation, her husband had to return to war in May 2020 for her daughter’s hearing aids to be covered, as his military insurance only covers the cost while he is on active duty.  

Kaiser Permanente, one of the largest healthcare providers in California, does not participate in the state program, so those that are insured under Kaiser are not able to access those services.

And it’s not just Kaiser. Only 1 out of every 10 children with private health insurance have access to hearing aids and services, according to Odeh.

The new bill, “takes head on the market gap that exists in the private market,” Odeh said.

By requiring all commercial insurance plans to cover hearing aids and services, the bill would remove the geographic barriers and segmented care issues and ensure that more children are able to access hearing aids in a timely and efficient manner, Odeh said.

Kristina Rousso, an audiologist at the USC Keck School of Medicine said that research shows if a child is diagnosed and treated for hearing loss by six months of age, there is a very high likelihood that the child will develop on par with children who are not hearing impaired.

“That is huge because you can do it super early,” Dr. Rousso said. “There aren’t any typical roadblocks that would get in the way of this other than actually getting hearing aids to the ears.”

Hearing aids typically cost anywhere from $3,000 to $6,000, and with each growth spurt a child goes through they need new ear molds to accommodate their growing ears. Every time a parent has to get their child a new set of molds it can cost an additional $200 to $400.

The Early Hearing Detection and Intervention program ensures all 50 states and the District of Columbia have laws or voluntary compliance programs related to newborn hearing screening and early identification, and recommends hospitals follow the 1-3-6 guidelines for all newborns.

That means completing hearing screening by 1 month of age, diagnosing any hearing loss by 3 months, and selecting and fitting hearing aids within one month of a hearing loss diagnosis. Referral to early intervention services should occur by the time a child is 6 months.

Dr. Daniela Carvalho, director of the Hearing and Cochlear Implant Program at Rady Children’s Hospital San Diego, said that many experts are now pushing for an even tighter standard known as 1-2-3 that cuts the time from screening to obtaining hearing aids in half by encouraging a diagnosis by two months and hearing aid fitting and selection by three months.

The federal government passed the Newborn and Infant Hearing Screening and Intervention Act in 1999, mandating grants or cooperative agreements to develop statewide newborn and infant hearing screening, evaluation and intervention programs.

Health experts generally agree on screening, diagnosing and treating hearing loss in babies. There are currently 27 states that cover hearing aids by either mandate or in state exchange. By 2024, more than 30 states will require private and group health insurance plans to cover hearing aids for children. But so far, California isn’t one of them.

These days, Wonderly is advocating for passage of SB-635. She now has three hard-of-hearing daughters, and a son whose hearing status is currently undetermined, but who doctors suspect could need hearing aids too. In a letter to the Assembly Health Committee in support of the bill, Wonderly said that none of the pediatric audiologists in her area participated in the Hearing Aid Coverage program.

“The lack of accessibility in utilizing this program means it fails to have value to our Sacramento Area families,” she wrote. “By not funding hearing aids for children, deaf and hard of hearing children are being left out.”