As featured in CalMatters on September 6, 2022 by Elizabeth Aguilera.

A proposal to expand a year-old California program that provides hearing aids to children was approved by the state Legislature in the final days of the session that ended Wednesday.

If Gov. Gavin Newsom signs the bills, the expansion will add about 2,000 additional deaf or hard of hearing children who have partial insurance coverage and up to age 21 who are not currently eligible for the income-based Hearing Aid Coverage for Children Program. If approved, it will go into effect Jan. 1, 2023.

“For the families that weren’t eligible before this is relief they have been waiting for a long time. Young adults who are aging out of the program will be able to stay on,” said Mike Odeh, senior director at Children Now, an advocacy organization focused on children. “We know hearing aids are not just a nice-to-have medical device. It’s truly important for all sorts of communication, socialization, and development that are important for kids and youth thriving.”

Ensuring more children are eligible is good news for parents and advocates but it raises the question about whether the program, which has been plagued with problems, can actually serve them. In its first year, the program provided hearing aids to a tiny fraction of the 2,300 kids it intended to reach annually. Overall, about 7,000 kids currently qualify but they typically only need devices every three years.

In addition, the application process is complex and takes a long time, families with some insurance coverage are not eligible and few qualified providers who serve children are accepting the program. For physicians and audiologists, the state reimbursement rates are low and they could wait years to get paid, advocates said.

The last-minute addition to the budget bills this week followed a CalMatters story about the program’s challenges, a strident letter from the Republican Caucus to the state about the failure of the program to reach more children, and continued work by advocates and Central Valley Assemblymember Joaquin Arambula.

“I’m so grateful,” said Michelle Marciniak, founder of Let California Kids Hear, an advocacy organization that works to increase access for deaf and hard of hearing children. “It was a huge weight seeing a certain population excluded from this program.”

Earlier this year, as part of the budget process, the Legislature had requested additional funds to improve the program and proposed expanding it to include children with partial insurance coverage. But that proposal did not make it into the governor’s revised budget released in May.

Then last week, Arambula carried the language that was inserted into broader budget bills.

“This budget item means so much to so many children and families. I applaud the advocates whose tenacity helped achieve this, and I’m profoundly grateful to the State Administration for working with us to ensure the Hearing Aid Coverage for Children Program can be expanded this year to underinsured children in need,” he said in an email. “We know these hearing aids and services are vital in helping these children develop and learn and, most importantly, bolster their well-being and connect with the world around them.”

Odeh pointed out that while the expansion is great news, advocates will continue to lobby the state to improve the clunky and long application process, to increase reimbursement for providers and to get more audiologists and doctors to accept the program.

Hearing aids for children typically cost from $3,000 to 10,000 and need to be replaced every three years.

For Brittany Saleaumua, in Torrance, the expansion would be a relief. The last time her daughter Quinlyn, 9, needed a new pair of hearing aids the family received help from the HearAid Foundation, which provides hearing aids for children whose families can’t afford them.

Quinlyn was diagnosed as a baby but it took more than a year to get her first set of hearing aids. For that pair, the family set up a 3-year payment plan for $175 a month to afford the hearing aids that allowed their toddler to hear the sound of their voices.

The family has insurance through Kaiser, which covers $1,500 toward the hearing aids, Saleaumua said. They cost $5,000.

“To have additional coverage to what we have through insurance would be a huge improvement,” Saleaumua said.  “When I was having to figure out how we were going to pay in December, I thought, ‘Do I give my kids a Christmas or not. Do we just not buy presents or do we not pay bills?’”

The program, which debuted in July 2021, currently provides hearing aids for children who do not qualify for Medi-Cal, the state’s insurance program for low-income residents, or do not have any other insurance. Families must meet certain income requirements. It was created after a 2019 legislative proposal to classify hearing aids as medically necessary so health insurers would have to cover them. That bill was opposed by health insurers and was pulled by the author after the Newsom administration said it would fund a program instead.

In its first year, the program dispensed only 39 hearing aids, according to data from the California Department of Health Care Services, which oversees the program. The agency did not say why the program reached so few children in its first year.

On Aug. 12, the Senate Republican Caucus expressed concern about the program in a letter to the Department of Health Care Services and demanded answers. In the letter, they asked why the program has served so few children and what is going to be done to correct the problems.

“It strains belief that, after a year of operation, this program has only assisted a fraction of those estimated to be eligible, and without explanation,” they wrote.

According to the office of Lancaster Republican Sen. Scott Wilk, the caucus has not yet received a response from the Department of Health Care Services.

Agency spokesperson Anthony Cava said it is still preparing a response for the caucus. If the expansion becomes official, Cava said it would update all communication, including websites, applications, and correspondence with the new eligibility information by January 2023.

Getting hearing aids early in life is critical for infants and children. They stand to lose speech, language and social-emotional development if they are not able to hear soon enough, according to a study in the journal Pediatrics.

The goal among physicians is to fit children with hearing aids by the time they are 6 months of age, said Dr. Dan Duran, audiologist and manager of audiology at Valley Children’s Hospital in Madera.

Any delays in getting hearing aids make it nearly impossible for kids to catch up to their hearing peers.

“These delays can impact kids in terms of their speech and language development,” Duran said. “It can also set them back in other important milestones as they are developing and growing.”

Duran said the expansion of eligibility will benefit families who struggle to pay their share of costs after insurance or who wait to gather up the funds or put off getting devices for their children because of cost. He expects the center will be even busier because families come from as far as Santa Barbara and Stockton for care.

Marciniak said the lack of providers accepting the program is a huge problem for families who have to drive long distances to reach them. Expanding the provider list is next on advocates’ list of things to do.

For single mom Kimberly Nguyen, in Sacramento, the expansion comes a little too late for her family to use now but it will be a great benefit in the future, she said.

She had been waiting to see if any changes to the program would cover her family because they have partial insurance. After waiting more than a year and seeing no hope for change this year she used money she saved from working extra hours to finally purchase a pair of hearing aids for her youngest daughter last month.

Nguyen has two daughters, 10 and 7, who typically need hearing aids every three years. Next time she hopes the state program will save her thousands of dollars. That is if she can find a provider in Sacramento. Currently, the closest doctors on the state’s provider list are in San Francisco.

“This is great for all the families who can now access the program and who don’t have to worry about how to pay the difference,” said Nguyen, who has testified before the Legislature and advocated for the change. Her insurance covers $1,000 of the $6,000 hearing aids she purchased.

At the same time this week, the California Public Employees’ Retirement System, which administers health benefits for state and local government employees and retirees, announced that its basic plans would cover hearing aids for children starting in January 2023. That means instead of covering just a fraction of the cost, the insurers will fully pay for the devices.

This is the news Caprice Shular, of Lodi, has been waiting for. Her child Avery, 7, was diagnosed with hearing loss when she was 4 weeks old. Her hearing aids cost $5,000 and insurance only covered 20% of the cost.

A credit card paid for Avery’s first set of hearing aids. The second time Avery needed a new pair, friends held a fundraiser and Shular’s father pitched in $1,000.

Now, the next pair will be covered by their insurer under CalPERS or they can apply to the expanded state program if it is signed by the governor. Either way, Avery’s hearing aids should be covered.

“I’m excited, but still holding my breath until I find out for sure,” she said.

She’s been waiting for this since the hearings for the failed 2019 bill, when she testified about her daughter’s needs.

“You can’t get a redo or get back those first few years when they are developing their speech and communication,” Shular said.