SACRAMENTO, Calif. — This story was originally published by CalMatters.
Two of Johanna Wonderly’s four children depend on hearing aids, and the other two will probably need them in the future. At roughly $6,000 per child, the cost adds up quickly.
But the Roseville family can only afford them when Wonderly’s husband, Paul, is called to active duty for the California Army National Guard, because that’s when federal coverage kicks in. The family’s standard insurance does not cover hearing aids.
Her second oldest daughter, Cara, was born while Paul was working at his then-private-sector job as a bartender. His insurance denied their claim for a hearing aid. A state-run program for children with disabilities or chronic medical conditions said the family made too much money to qualify for help. The Wonderlys applied for assistance through a national non-profit and crossed their fingers.
“We were living paycheck-to-paycheck back then. We didn’t have savings if my husband lost his job, let alone pay for an unexpected $6,000 expense,” Johanna Wonderly said. “We were going to have to say ‘Sorry, Cara. You don’t get hearing aids.’”
The Legislature this year unanimously passed a measure that would have helped families like hers by requiring health insurers to cover hearing aids for anyone under 21. Most private health insurance in California designates children’s hearing aids as cosmetic or elective devices.
But over the weekend Gov. Gavin Newsom vetoed the bill, citing improvements made to an existing state program established in 2021 to help families afford hearing aids. It’s the second time Newsom has effectively blocked this legislation and pointed to the state’s Hearing Aid Coverage for Children Program as an alternative. Advocates and some legislators say that program has failed.
In his veto message, Newsom cites concern about creating a costly precedent by adding benefits to the state’s Affordable Care Act insurance exchange, known as Covered California. A legislative analysis estimates the added cost at about $11 million.
Newsom also said improving access to children’s hearing aids remained a priority for his administration.
“We can, and we must, do better for these children and their families as we implement” the Hearing Aid Coverage for Children Program, the message said.
Children’s advocates say the program will never work.
“There’s been two years of oversight hearings on this program. It’s not working, so to double down on a failing program it’s not only harmful to children, it’s wasting, you know, millions of taxpayers dollars,” said Michelle Marciniak, co-founder of Let California Kids Hear, a parent advocacy group that sponsored the legislation. Marciniak’s daughter lost partial hearing after a viral infection.
Lifelong impact of hearing loss
Research shows infants and children who cannot hear can develop permanent speech, language, and cognitive deficits. They quickly fall behind in school, suffering delayed reading comprehension and social and emotional problems. Those who get an assistive device like a hearing aid within the first six months of life have much better outcomes.
“If you have a child that’s born with hearing loss and doesn’t get hearing aids until the age of 3 or 4, this kid is going to be delayed for the rest of their life,” said Dr. Daniela Carvalho, director of Rady Children’s Hospital-San Diego’s hearing program, who testified in support of the measure.
Dr. Dylan Chan, director of the Children’s Communication Center at UC San Francisco, said the impact on a child’s life is so profound that hospitals are required by state and federal law to test every newborn for hearing problems.
“But identifying kids with hearing loss does no good if we don’t have the ability to provide the appropriate interventions,” Chan said. “It would be like being able to diagnose a child with asthma but not giving them an inhaler.”
Carvalho said several of her patients’ families were waiting for the legislation to pass to be able to afford hearing aids.
“They have their hands tied. I mean it literally is a choice that the family needs to make. It’s a huge financial decision,” Carvalho said.
Support for hearing aid bill
Marciniak, the advocate who has helped lead the fight for coverage since 2019, said lawmakers brought the bill back this year because the Hearing Aid Coverage for Children Program has been ineffective since it launched in 2021.
“This is definitely a broken promise,” Marciniak said. “And it’s disappointing because they haven’t been willing to come to the table to solve this with us in a meaningful way.”
Most states already include hearing aid coverage in their insurance exchanges. Thirty-two states require private insurance to offer some level of coverage for kids’ hearing aids, including 27 that mandate it as a benefit under the Affordable Care Act. California only offers coverage to very low-income families through public insurance like Medi-Cal or the program for kids with disabilities, setting the income cap for a family of four around $40,000.
The state’s coverage gap leaves 20,000 kids and young adults whose families don’t qualify for low-income assistance, according to a California Health Benefits Review Program analysis for the Legislature. That represents nearly half of all hearing aid users between the ages of 0 and 20.
In 2019 a similar bill passed unanimously and was sent to Newsom. At the time, former Santa Monica Democratic Assemblymember Richard Bloom, the bill author, told CalMatters that Newsom asked him to rescind the bill with a promise to create a budget fix.
That “fix” came in the form of the Hearing Aid Coverage for Children Program. The program, which received $16 million its first year, distributed hearing aids to 39 children and has been harshly criticized by legislators demanding accountability. Last year another budget allocation expanded eligibility to about 7,000 kids and doubled the budget. Currently, 255 children — roughly half of all applicants — have gotten hearing aids, according to state data.
Parents say they can’t find providers who participate, the application process is lengthy and confusing, and resources are unavailable for people who don’t speak English.
Kasey Cain, a mom from Lincoln and board president of California Hands and Voices, said she spent nine months fighting red tape. She sent required paperwork to the program in a pre-addressed envelope from the state. It was returned as undeliverable.
“It was a nightmare. I started to receive calls that they were going to close my account because they never received the documents,” Cain said. “I don’t know why your self-addressed envelope doesn’t work.”
Eventually, she and her husband gave up and put the $2,500 charge on a credit card. They couldn’t wait any longer to update their 7-year-old son’s hearing aid. Later, when one of his hearing aids was replaced by a cochlear implant, insurance considered it a necessary medical device and covered it. The family was responsible for a $15 copay.
Newsom’s veto message said the Department of Health Care Services, which manages the hearing aid program, has developed an improvement plan that will be implemented over the next six months.
A representative from the Department of Health Care Services in a written statement said the department has moved its application process online and translated materials into 19 languages. Information about the program is also mailed to all parents’ whose children are identified with hearing loss at birth.
California Democrats want to try again
Sen. Caroline Menjivar, a Democrat from Burbank, co-authored this year’s measure with Democratic Sen. Anthony Portantino from Glendale.
“I’m not sure why we haven’t been able to pass it,” Menjivar said during the bill’s final floor vote. “We are behind close to 30 states that have already implemented this. Let’s be the next one.”
In a statement following the veto, Menjivar pledged to hold the administration accountable.
Wonderly, the mom of four, said it took 14 months for her eldest daughter Cassie’s hearing loss to get diagnosed. She worried that Cassie, who didn’t respond to sound and who had the limited eyesight normal for newborns, wouldn’t know who her parents were.
“Every night I fell asleep with my hand on my baby because I wanted her to know that she was secure, she was safe. That she knew that we were there for her,” Wonderly said.
Wonderly said eventually the national grant program paid for her second daughter’s hearing aids. But soon Cassie, now 9, will need an updated pair, and Wonderly’s two other children, ages 7 and 1, who also have hearing loss, will likely need hearing aids in the future.
The closest provider that participates in the Hearing Aid Coverage for Children Program is more than 100 miles away, Wonderly said.
Supported by the California Health Care Foundation (CHCF), which works to ensure that people have access to the care they need, when they need it, at a price they can afford. Visit www.chcf.org to learn more.
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