CALIFORNIA, USA — This story was originally published by CalMatters.
A little over a year after California launched a program to provide hearing aids for an estimated 2,300 children annually who lack health insurance, it has provided devices to only 39 children.
There have been multiple problems with the Hearing Aid Coverage for Children Program. The application process is cumbersome and families with partial insurance coverage are not eligible. For physicians, reimbursement time is long, reimbursement rates are low, and some don’t know about the program or choose not to participate, according to parents and advocates who lobbied the state to fund children’s hearing aids.
The California Department of Health Care Services, which oversees the program, refused to say why the program had served so few children in its first year and refused to let CalMatters interview anyone who works with the program. Instead, department spokesperson Anthony Cava emailed that the agency “has already implemented several key improvements to HACCP to increase access, including implementing an online directory to locate a provider for HACCP-eligible children. DHCS is committed to continuing the ramp-up of this important program, through program operations and outreach activities, to expand the program’s reach.”
The typical cost of children’s hearing aids ranges from $3,000 to $10,000. There are about 7,000 hearing impaired children in California and kids typically need new hearing aids every three years.
Hearing aids for 4-year-old Scarlett Kovacevic cost $3,200 this year. She finally qualified for the program after a frustrating six-month long application process, said her mother Mia Kovacevic. But then, her daughter’s provider, the Sutter Audiology Clinic, would not accept the program because of billing issues with the state.
Sutter does participate in state-run programs, company spokesperson Angie Sheets said in an email.
“As we do for new programs, we are reviewing the program’s requirements and processes to determine participation.”
For Kovacevic, the next-closest provider on the state’s program list is in San Francisco, two hours away from where the family lives in Placer County. So the family opted to stay with Scarlett’s providers and set up a payment plan.
“There was nothing I could do at this point,” Kovacevic said.
Scarlett was diagnosed as a newborn with sensor neural bilateral hearing loss when the family lived in Florida. She had her hearing aids by the time she was 5 months old, courtesy of a Florida program for kids without insurance.
“It felt like this (CA) program was literally making me jump through hoops. Like they just wanted to make it as hard as possible and to slow it down. There was no urgency on it,” Kovacevic said. “In Florida, they wanted to get her fitted with hearing aids as soon as possible.”
In its first year, the Department of Health Care Services received $6.7 million to administer the program and $10 million for services like hearing screenings, earmolds and hearing aids. The program is being operated within Medi-Cal, the state’s health insurance program for low-income families, to utilize its providers and billing reimbursement rates.
This year, the Legislature asked for $5.35 million in additional funds to improve the program and expand benefits to around 1,400 children with partial insurance coverage or high deductible plans who meet the income requirements. Gov. Gavin Newsom did not include that request to expand the program in the final budget.
Advocates hope the extra money for expanded coverage will be included in a budget amendment, expected this month.
“Families are struggling to afford the cost of medically necessary hearing aids for their children,” said Michelle Marciniak, a parent of a hearing-impaired child and co-founder of Let California Kids Hear, a coalition working to ensure deaf and hard-of-hearing children have access to hearing aids and expert care. Marciniak said parents rack up debt, host fundraisers, or rely on extended family and friends for financial help, while some children go without hearing aids for months at a time.
“They are making difficult decisions and devastating tradeoffs for their families to obtain hearing aids so that their child can hear, learn and connect with the world,” she said.
California’s program focuses solely on the hearing impaired children without health insurance. The families it serves make too much money to qualify for Medi-Cal, or California Children’s Services, which assists families with children with certain disabilities. Families who qualify for the hearing aid program earn between 138% and 600% of the federal poverty level, or about $38,295 to $166,000 a year for a family of four.
Advocates had hoped the program would ease the burden for families with some insurance coverage, but it does not include them because it focuses only on those without any coverage for hearing services or hearing aids. Commercial health insurers offer a range of coverage, from zero benefits to some coverage, such as $500 to 1,000 toward hearing aids. Medi-Cal and California Children’s Services cover the full cost of hearing aids for enrolled children.
Early access to hearing aids is critical for infants and children who are hearing impaired. Children who cannot access sound as soon as possible lose speech, language, and social-emotional development, according to a 2020 study in the journal Pediatrics. Children have the best outcomes when they receive hearing aids or cochlear implants before 6 months of age, the study found.
Once that development time is lost it cannot be regained, said Dr. Dylan Chan, director of the Children’s Communications Center at UCSF and a pediatric ear, nose and throat doctor at UC San Francisco Benioff Children’s Hospital.
“There is a cascade of effects and all of those things can be mitigated by a kid having easy access to hearing aids,” Chan said. “It is really frustrating because this is something we know works.”
One in 500 U.S. babies is born deaf or hard of hearing, Chan said.
As of July 6, 2022, the program has received about 200 applications. Of those, 83 have been enrolled and 92 applicants have been denied. Families were denied because their incomes were high enough to exceed the program’s limits or low enough to qualify their children for Medi-Cal. Others were denied because they had some insurance coverage, or they submitted an incomplete application, according to the Department of Health Care Services.
One of the chief complaints from providers and families, said Marciniak, of Let California Kids Hear, has been providers not being reimbursed quickly or at all because the billing system was not fully set up for the program. Kovacevic said this is why her daughter’s doctors in Sacramento weren’t participating in the program.
During a hearing in February, Department of Health Care Services chief deputy director Jacey Cooper told senators that the agency released billing codes for the program over several months and that more would go live between February and May. But in June, the agency was still tweaking the program and releasing codes.
The email the department spokesperson sent CalMatters said the department has improved its billing code system after consulting with experts.
Doctors can opt onto the list, but very few have because they do not treat children or have chosen not to participate. In Los Angeles County, there are three providers. In Sacramento County, there are none.
Marciniak, of Let California Children Hear, said many of the state’s largest providers are not taking the program based on a survey by the organization.
Katharine Weir-Ebster, spokesperson for the Department of Health Care Services, wrote in an email that while the number of doctors on the program list is limited, any of the thousands of Medi-Cal providers can see the children in the program “within their scope of practice.” Medi-Cal providers include 84 enrolled audiologists and an additional 1,010 early and periodic screening, diagnosis and treatment providers. The department does not know how many of these are pediatric providers who specialize in working with children.
Advocates say most Medi-Cal providers do not have the qualifications or equipment to serve children. In order to get hearing aids in California, a child under 16 must get a recommendation from “both a board-certified, or a board-eligible physician specializing in otolaryngology, or the head and neck, and by a state licensed audiologist,” according to state law.
Pediatric audiologist Dr. Mary Frintner said she understands why many providers are not taking the program. They may only treat adults, and adding children means buying more equipment and adding expertise. In addition, they may not have the right systems to process the paperwork required to get paid.
Frintner, who was the only practitioner in Los Angeles last year and is now one of three, said treating children is more than just having different equipment or smaller ear molds on hand. It’s understanding how hearing loss impacts the whole child.
“Their brains are developing, their speech and language is developing. You have to have different skill levels, different test equipment and a different knowledge base,” Frintner said. “For me, it’s the patients I’ve already been seeing.”
But she is considering opting out, she said. It’s a lot of paperwork, data entry and approvals even before the child visits for the first time. Reimbursement is slower than it is with other state programs, she said, and her office staff often are submitting and resubmitting information to the state.
Frintner said she has not been paid for any of the services or hearing aids she provided through the program since she joined in July 2021.
Every child she treats on state programs is considered a financial loss, she said. Which is why she sometimes finds that after paying her staff and other bills there isn’t money left to pay herself.
“Thankfully I have a small staff and we work our buns off,” she said. “I love all my patients, the joy I see when I put a hearing aid on a child for the time or new ones or when I test a child and we are able to tell parents that their child is OK. That’s what I get, which makes me rich.”
In 2019, legislation that would have required private insurers to fully cover children’s hearing aids was headed to Newsom’s desk, said Mike Odeh, of Children Now, which supported the effort.
The bill was opposed by the California Association of Health Plans, the Association of California Life and Health Insurance Companies, and America’s Health Insurance Plans.
Before it could get to Newsom, Santa Monica Democratic Assemblyman Richard Bloom pulled the bill. Bloom’s office said it was pulled because the hearing aid program was going to be included in the budget.
In Sacramento, Kimberly Nguyen, a deaf single mom of two girls who are hard of hearing, thought her daughters would qualify for the program, even though her insurance pays $1,000 toward hearing aids. Her daughter’s devices run about $6,000 for each girl every three years.
“I was thrilled when it passed. I was shocked to find out that I didn’t qualify,” said Nguyen, who had advocated for the bill and testified before the Legislature with her daughters. “I felt it was a waste of time. I waited three years.”
Every month Nguyen saves money for the next round of hearing aids for her girls, 10 and 7, and herself. She has foregone vacations, days off work and extra activities for her kids to put money away for the hearing aids. Only recently did she pay for a soccer program, which the girls love.
“My kids love to sing, love to dance, love to watch movies. It’s a quality of life issue,” she said.
Chloe, the 7-year-old, has been wearing her old hearing aids while her mom waits for the program to include kids with partial insurance. Chloe said she wants purple devices but said her mom told her to be sure because she will have them a long time.
Nguyen, who works for the California Department of Rehabilitation, is already thinking about how she will have to buy Chloe’s new pair of hearing aids soon because the state may not change the program soon enough, or ever.
“I feel it’s not fair. She is losing access to the world,” she said. “I’m going to have to buy them.”
CALmatters.org is a nonprofit, nonpartisan media venture explaining California policies and politics.
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