"No One Can Stop Them:" Meet the Families Behind the Push for Insurance Coverage for Montana's Deaf Children

Nine years ago, doctors diagnosed Caden Shrauger with stage-four neuroblastoma, a rare cancer that developed in his nerve cells and spread throughout his body. At the time, doctors told his family he had a 50 percent chance of survival.

Caden underwent numerous rounds of treatment to fight back, and eventually, he won his battle -- but not before the chemotherapy damaged his hearing.

Now, the 12-year-old Bozeman boy is on his second pair of hearing aids, which, he told lawmakers on the Montana House Human Services Committee, help him do everything from safely cross the street to keep up in class.

"I do feel bad for kids with hearing loss who can't afford hearing aids," Caden told committee members. "They must miss out on so much because of that. Mine have been an important part of my life and success in school. This is why we feel this bill is important for Montana's children like me."

Caden and his mom, Pamela Shrauger, testified in the committee on Monday, Feb. 15, in favor of a bill that was carefully crafted by a team of families like theirs who have dealt firsthand with the extreme cost of providing for their deaf and hard-of-hearing children in Montana. The state is among half of the states in the nation that don't require private insurance companies to cover hearing aids or audiological services for minors.

The bill in question -- House Bill 291 -- would change that. It is sponsored by Rep. Moffie Funk, D-Helena, who told committee members that "HB 291 is the culmination of years of tenacity, research and action by a group of moms and dads who need help."

The bill hearing drew families who shared deeply personal stories of their struggles with hearing loss and the great expense of treating it. It did not, however, draw any opposition -- even from insurance companies. That has left many of the families pushing for the bill hopeful that their hard work is about to pay off.

After years of expensive cancer-related travel and treatments, Pam Shrauger said their insurance premiums were sky-high -- but the treatments were covered. Then the bills came for Caden's two sets of hearing aids -- $6,000 each time, completely out-of-pocket.

"No one wants to be in the position of having to face financial ruin or the wellbeing of their child," Shrauger told committee members.

For Funk, HB 291's origins trace back to a July 2019 meeting at the Staggering Ox in Helena with two moms of hearing-impaired children -- Nicole Thuotte and Moriah Cochran -- who had an idea.

"I get a little emotional, because these moms are just amazing," Funk said in an interview, reflecting on that first meeting. "Talk about a grassroots movement -- that's 100 percent what it was."

Thuotte and Cochran started the group "Let Montana Hear" with a single purpose: pass HB 291.

The most recent data from the CDC shows that out of 11,273 newborns screened in Montana in 2018, 12 were reported to have hearing loss of some kind. From 2014 to 2018, an average of 21 babies were flagged per year as hearing impaired. Thuotte told committee members that about 400 children in Montana currently have documented hearing loss.

Thuotte's 6-year-old has needed hearing aids since the age of three. While Medicaid initially covered some of the expenses, she's had to shoulder the cost of multiple pairs of hearing aids and related appointments with audiologists, leaving her finances hurting.

Thuotte had been part of a different Facebook page for parents of deaf and hard-of-hearing children, where she met Cochran, a mother to a four-year-old with severe hearing impairments. Cochran mentioned an organization called "Let America Hear" that was pushing for legislation to cover hearing aids in states around the nation.

As Cochran tells it, her pairing with Thuotte was a match made in heaven. As a long-time Helena resident, Thuotte had familiarity with the legislative process, something Cochran lacked. Cochran, on the other hand, had an extensive web of connections to families with hearing-impaired children around the state through her work with Montana Hands and Voices. Together, they assembled a few fellow parents of deaf children and connected with Funk, whom Thuotte had known for over a decade, to gauge her interest in sponsoring the bill.

For her part, Funk said the determination of the moms blew her away.

"I was so inspired by them and their tenacity," Funk said. "These two moms, no one can stop them. I want them to have this."

The group modeled HB 291 after two prior pieces of legislation that were successfully signed into law: Senate Bill 234, passed in 2009, required health insurance companies provide coverage for autism treatments, while House Bill 318 in 2015 did the same for Down Syndrome. Both bills were largely unchallenged, and Thuotte knew that would be critical for the passage of HB 291.

Funk met early on with insurance companies like Blue Cross and Blue Shield of Montana, working to tweak language to ensure they didn't oppose the bill during its hearing.

A representative from PacificSource Health Plans, Jennifer Hensley, told committee members during the hearing that the bill would have a "nominal cost," and that premiums on their plans would not increase if the bill passed.

"It's not like a large number of our members have this need to begin with, and for those who do have the need, it's critically important," Hensley said.

Many proponents of the bill brought up the fact that Montana has long required newborns to be screened for hearing impairments. A bill passed in 2007 mandated all hospitals in Montana implement the tests, and a separate measure introduced that year would have required insurance companies in Montana provide coverage for hearing aids for all people, regardless of age. That bill died due to concern over its large fiscal impact.

Funk highlighted the irony of the state's handling of support services for hearing-impaired youth during the hearing.

"It almost seems cruel that we require testing, but then leave some parents hanging and struggling to pay for services and equipment for their children," Funk told committee members.

While the hearing aids themselves are expensive, the more frequent treatments and appointments can also pose a financial burden to families. Pam Shrauger said Caden's audiologist told them new molds for the hearing aids should be done like shoes: every time he goes up a shoe size, it's time for new molds.

Shrauger said "annual maintenance" of Caden's hearing aids -- including new molds and appointments with the audiologist -- totals around $250. But with a lifespan of three to five years and his last pair purchased in 2017, Caden will soon need another $6,000 worth of hearing aids. In an interview, he said he's acutely aware of how expensive they are.

"I think it puts a bigger burden on me not to lose them or break them," he said, smiling at his mom.

Shrauger said that after all Caden went through while battling cancer, she still doesn't understand how ensuring her son can hear could be so financially draining.

"It feels like an outlier," she said. "He had to have everything under the sun thrown at his cancer treatment, and to then have this odd duck expense -- it didn't make sense."

Proponents at the hearing also pointed out that ensuring hearing-impaired children have access to amplification devices and services early does more than just save families from financial hardship -- it also aids their development.

Cecily Whitworth, a doctor of linguistics who herself became deaf during her high school and college years, said the devices are only part of the solution. Whitworth testified in support of HB 291, but also for another bill designed to improve language screenings for hearing-impaired children, House Bill 328.

"For most families with deaf children, their child is the first deaf person they've ever met," Whitworth said in an interview. "If you first detect [hearing impairment] at four, you're way past when it's time to start solving the problem."

Whitworth brought the concept for HB 328 to Rep. Connie Keogh, D-Missoula, out of concern that current communication tests offered to children with disabilities aren't properly assessing language development in youth who are deaf or hard-of-hearing. The bill would require that the state make a list of available language development tests, including those for American Sign Language in addition to English or other languages, and allow them to be included in assessments of hearing-impaired infants and toddlers to ensure they're acquiring a language.

Whitworth said since hearing loss is a fairly uncommon disability, protections for hearing-impaired people are often overlooked in law. However, she said that doesn't mean deafness doesn't significantly impact quality of life -- especially if it's not addressed early in childhood.

"What [hearing impaired children] do need is access to language of some sort, and accessible communication with their families in whatever form that takes," Whitworth said.

Regardless of the fate of HB 291, Cochran said the movement she started with Thuotte will have lasting implications for families with hearing-impaired children in Montana. In just two years, Thuotte estimated "Let Montana Hear" has grown into a loose group of about 40 families, bridging geographical and social divides along the way.

"When I found out my son was deaf, I didn't know anyone who had a child with hearing loss," Cochran said. "That feeling of being alone and feeling like you're the only one is a really terrible feeling. When we start connecting parents and they see that they're not alone -- that's been a huge thing."

Austin Amestoy is a reporter with the UM Legislative News Service, a partnership of the University of Montana School of Journalism, the Montana Broadcasters Association, the Montana Newspaper Association and the Greater Montana Foundation. He can be reached at [email protected].