Legislative Win for Children with Hearing Loss
In the 2018 legislative session, we fought for—and won—access to healthcare services and hearing equipment for children who experience hearing loss.
Hearing services come with a steep price tag and private insurance companies have often refused to cover them. That changed in Oregon when Governor Brown signed into law HB 4104. This law:
Requires insurance companies in Oregon to cover evaluations, fittings, and hearing equipment for children
Mandates that insurance companies help parents navigate their complex systems, and expands access to pediatric audiologists
This law helps children like Anya. Her family struggled for years to get insurance coverage for hearing aids. Now she has better access to hearing aids, FM microphone systems, and other accessories that she uses in her classroom.
The law was expanded to include adults by the state's Department of Consumer and Business Services under rules required through the Affordable Care Act barring discrimination based on age.
The State of California is pursuing similar legislation because of Oregon's success.
Media Coverage
Bill Requiring Insurance Cover Hearing Aids Awaits Signature (OPB News, February 28, 2018)
Meet the Advocates
Meet Gavin
Meet Gavin — a 4th grader at Tucker Maxon School in Portland. He’s helping to advocate for HB 4104 — a bill that would make sure that kids with hearing loss have access to the tools that they need to grow their language abilities and interact with their peers.
We talked with Gavin and his mother Heather about Gavin’s story and why early detection of hearing loss, early amplification and highly qualified early intervention programs are so important for kids like Gavin.
Q: Can you tell us a little about Gavin?
Gavin is 11 years old. Gavin is an active kid in many ways. He loves learning new things, asking lots of questions about the world around him, and enjoys attending after school sports and being in Boy Scouts of America. Gavin is profoundly deaf but, thanks to bilateral cochlear implants, he is able to hear normal levels of hearing in both ears.
Q: When was Gavin first diagnosed with hearing loss?
Gavin was diagnosed as a newborn through the Early Hearing Detection and Intervention (EHDI) program. Created in 1998, it requires every child born in America to be screened shortly after birth for the possibility of hearing loss. Without the EHDI program, it is likely I wouldn’t have realized that Gavin had a hearing loss for quite some time.
When Gavin was a week and a half old, we scheduled an Auditory Brainstem Response (ABR) test with the audiologist. The ABR test measures the reaction of the parts of a child’s nervous system that affect hearing—specifically, the hearing nerve’s response to sounds. The ABR test confirmed that Gavin had hearing loss.
At just two and a half weeks old, Gavin got his first set of hearing aids. The school for the deaf let Gavin borrow a set of digital hearing aids while I worked on a grant to pay for Gavin’s first hearing aids which were $1.300. Our insurance company would not cover them. They said, “Hearing aids are considered cosmetic.” Our insurance company would not cover the molds or the fitting processes. Luckily for Gavin, the school for the deaf provided these services free of charge to him.
Q: When did Gavin get his cochlear implant?
At 13 months old, Gavin got his first cochlear implant. At that time, children had to be at least a year old. Some states in America, however, are implanting children who are deaf at 9 months of age.
Gavin was bimodal—meaning that he had one cochlear implant and one hearing aid for 9 months until he was able to get his bilateral cochlear implant. Six of the 9 months were spent fighting back and forth with our insurance to cover his bilateral cochlear implant. Finally, Blue Cross Blue Shield said they would cover the bilateral implants, and Gavin got his second cochlear implant in July 2009.
Q: Can you tell us about Gavin’s progress in language acquisition?
Gavin has had a lot of speech therapy in his lifetime. I remember early intervention coming to our house and just working on babbling sounds with him. I remember that a helicopter says, “Wop, Wop, Wop!”
Gavin also has had a lot of mapping/programming of his cochlear implants to make sure he is able to access all of the speech sounds on the audiogram. Just this year, Gavin tested at 100 percent intelligible when he spoke to an unfamiliar listener. Gavin’s speech therapy nowadays is more of a fine-tuning. He can even sing on pitch! Gavin talks so clearly that if you couldn’t see his cochlear implants, you would have no idea he is profoundly deaf.
It’s amazing how fast these kids can catch up to their normal hearing peers. Most children like Gavin are leaving early intervention preschool, listening and talking, ready to go back to their neighborhood schools for Kindergarten.
Q: Why are you advocating for this bill?
This bill would help children like Gavin. I don’t think it’s fair that insurance companies tell parents that hearing aids are cosmetic.
Furthermore, insurance companies should not be telling parents that the bilateral cochlear implants are experimental as a way to get out of covering the surgery (In 2009, the surgery cost $83,000). Nowadays, it can cost up to $100,000.
If the child is a candidate for bilateral cochlear implants then the child should receive them. No family should have to fight their insurance companies to the extreme that I did so their child can receive a bilateral cochlear implant.
Let’s give these children what they need. It will cost society far less in the long-run to invest in necessary amplification and highly qualified early interventions early on. Early investments in accessing sound means these children will have a greater ability to obtain a higher education, pursue a career, and live independently.
Q: Why is having access to sound sooner rather than later so important for kids?
There is short window of time during which we can wire the brain for auditory input, which will avoid auditory deprivation. Children who do not develop auditory connections/pathways and learn to listen in the early years of life zero to three, do not get the same opportunity later in life because of the lack of neural plasticity. We like to say “Eyes open, ears on.” These children need to have access to sound all waking hours.
In Gavin’s Own Words:
Q: Why do you think this legislation is important?
To help other kids like me to be able to hear the best they can.
Q: Why are your cochlear implants important for you?
I love to hear! This world is full of sound, everything makes a sound! I enjoy hearing others talking, watching movies and listening to music. I enjoy going into Mcdonalds and placing my own order without the help of anyone. I listen and talk for myself! The only thing I don’t like about hearing is when I hear my mom say, “Gavin, please take the trash out.” I don’t like chores!
Meet Kimberly
Kimberly lives on a farm in Marion County outside of Salem and raises sheep. She experiences hearing loss which requires audiology evaluations and hearing aids so that she can go to school and participate in community activities with her typical peers.
She and her mother, Patie, shared her story and explained why HB 4104 is so critical for young people like Kimberly.
Q: Can you tell us a little about Kimberly?
She’s a very involved young lady. She belongs to two 4-H clubs, the FFA Organization for young people interested in farming, and participates in her church youth group and volunteers at church, too. She’s loves to sing.
Q: When was she diagnosed with hearing loss?
Three years ago, she had a growth in her ear that had to be removed. The growth caused damage and, after the surgery, the doctors weren’t able to completely restore to her hearing. She experiences bilateral hearing loss and has two hearing aids. It was a stressful, scary time for all of us. As a mom, I hope we never have to do this again. On the whole, Kimberly adjusted very well.
After the surgery, we had to wait for close to a year for her body to heal before they could do the audiology testing. During that time, Kimberly’s hearing loss was noticeable. The hearing aids made her quality of life so much better.
Q: Did you have insurance coverage? Did it cover the evaluation and hearing aids?
When I received the initial estimate of the cost, I nearly choked. It was somewhere between $8,000 and $15,000 for the evaluation and hearing aids. Fortunately, between our private insurance and the Oregon Health Plan, it was covered.
At the time, I wasn’t working, so we were a single-income family. Without our insurance coverage, it would’ve been very difficult — if not impossible — for them to pay for that.
Q: What has Kimberly’s life been like since she got the hearing aids?
With the hearing aids, we’ve noticed an improvement in Kimberly’s speech and singing. She loves to sing. We’ve appreciated her ability to sing more when she has hearing aids.
Q: Can you tell me more about her work with the young farmers organization?
Kimberly will receive her state degree in FFA. To qualify, she had to do a six-minute presentation in front of a group people she didn’t know, and document four years of work for her state degree. Her projects focus on animals and fruits and vegetables.
One of her projects is raising sheep. She has to help take care of the sheep, which includes breeding, helping them have babies, giving them shots, trimming their hooves, shearing them, and cleaning out the barn.
Q: Why is this bill important for young people like Kimberly?
Without ongoing access to insurance coverage, her quality of life would be greatly diminished and it would potentially become unsafe for her to be in the community.
In Kimberly’s Own Words:
Q: What difference do your hearing aids make in your life?
It is easier to hear when I am in a group. I am able to understand what others say and can talk with them.
Q: What do you think would happen if you didn’t have your hearing aid?
I would not be able to work as a volunteer with children. I wouldn’t know what I was being taught in school.
Q: Can you tell me about one of your favorite FFA projects?
I will be getting a proficiency award for vegetable production. I really like working in the garden and helping plants grow.
Q: If you knew of other kids who had trouble hearing and needed hearing aids but had trouble affording them, what would you say?
Please help them get hearing aids so they learn and do the things they like.
