Gov. Gavin Newsom just announced a new “first-in-the-nation” effort to lower costs for California families with newborns. But as California celebrates programs for diapers, thousands of families raising deaf and hard-of-hearing children are still fighting for something equally fundamental: access to sound.
Parents need more than diapers when they leave the hospital.
Mothers of deaf and hard-of-hearing children are still fighting to ensure their babies can hear “I love you,” listen to bedtime stories and develop language during the most critical years of brain development.
California once led the nation on this issue.
In 1998, California pioneered newborn hearing screening because early identification of hearing loss was recognized as critical to child development. Today, California trails 35 states that cover children’s hearing aids.
Twenty-eight years later, families are still being told by their health plan that hearing aids are “elective.”
Nearly 95% of deaf and hard-of-hearing children are born to hearing parents — families that must struggle to understand what comes next after one of the happiest moments of their lives. Some babies begin life in the NICU, where hearing loss rates are significantly higher, and 30% also have other developmental conditions.
Families are told that early intervention cannot wait. And as Newsom said, “you want to solve the problem, you’ve got to begin at the beginning,” because “85% of the brain is fully formed by 3.” “We can’t just identify problems; we have to solve them,” and that affordability remains one of the biggest challenges facing families.
Yet after a diagnosis, 90% of parents discover that their insurance will not cover the hearing aids their child needs during the most critical window of brain development.
Families are forced to put $6,000 hearing aids on credit cards, delay treatment, or go without entirely. For many children, access to sound is a lifeline to communication, learning, safety and human connection.
Dr. Daniela Carvalho of Rady Children’s Hospital has repeatedly warned lawmakers that “we do a beautiful job screening babies and fail miserably when it comes to treating them.”
In 2019, Dr. Dylan Chan of UCSF Benioff Children’s Hospital called the lack of timely access to hearing aids for children “a developmental emergency” that is “not only devastating for families, but costly to society.”
By failing to provide early intervention, health plans shift an estimated $1.9 million-plus lifetime societal cost per child onto education, other medical complications and society.
And the cost to solve this problem is remarkably small. For one dime per member per month.
For years, families brought bipartisan solutions to Sacramento with overwhelming support from the legislature.
Yet the Governor repeatedly blocked, pulled back or vetoed those proposals.
California also pursued a federal pathway to add hearing aids, but new rules made that pathway financially unviable given the broader package of benefits.
Instead, the Governor created an alternative program that has cost taxpayers more than $30 million while delivering fewer than 300 hearing aids to children since 2021.
Newsom just released his final budget, and once again, hard-of-hearing kids are excluded.
Recently, my daughter, who has advocated in Sacramento since first grade, testified before the California Senate and asked a heartbreaking question: “Gov. Newsom, after all these years, why aren’t deaf and hard-of-hearing kids included in California for All?”
It is a question California families deserve an answer to.
California led the nation in identifying hearing loss in newborns. It should not become known as the state that identified children early — and then left children and families to fend for themselves.
Michelle Marciniak is a founder of Let California Kids Hear and a former U.S. Senate, CURE Epilepsy, and Children’s Hospital Los Angeles staffer who now advocates for timely access to pediatric hearing aids and specialists.
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