Relationships, Relationships, Relationships…and Persistence in Oregon

In 2013, pediatric audiologist Dr. Shelby Atwill moved to Oregon, one of only 18 states at that time to have a hearing aid insurance mandate for children. Unfortunately, the mandate was quite limited. Coverage included a set of hearing aids every four years, earmolds and batteries at the initial fitting, and surgery for bilateral cochlear implants (CIs), but not those needing only one CI.

There was no guaranteed coverage for ongoing audiology services or related equipment and supplies—all necessary for kids to hear well. As with all state mandates, it only applied to commercial insurance plans covered by Oregon’s Insurance Division. The mandate did not include any out-of-state insurance plans, the state Medicaid plan, or self-funded plans. This left a very narrow slice of the pediatric population benefitting from the law.

This same year, George Okulitch and Regan Gray, government relations specialists, learned that their daughter was hard-of-hearing and needed hearing aids. They were told that their insurance covered hearing aids due to the state mandate and were given a list of audiologists to call. No one on the list could help their daughter. Ultimately, their daughter spent more than a year using loaner hearing aids provided by her early intervention program until they switched to an insurance company that did cover her.

Creating Legislative Change

Determined not to let other parents face the same challenges, George and Regan channeled their frustrating experience into an opportunity for change. This involved collaborating with many state-run agencies, local community programs, politicians and other associations to draft legislation and advocate for it to be passed into law.

In 2016, they contacted the Oregon Early Hearing Detection & Intervention (EHDI) program to learn about areas that needed their legislative advocacy. Improving insurance coverage for hearing devices and services rose to the top of the list. In collaboration with the Oregon EHDI program, Oregon’s Regional Programs, and Dr. Atwill, George and Regan gathered input from local communities and professionals and together they created a draft bill to revise the insufficient law.

In 2018, Regan found two chief sponsors for the bill who were key members of the Senate and House Health Care Committees. Next, she created a diverse coalition to support the bill, including children’s health advocacy organizations, the Deaf community and public employees’ unions—the Oregon Education Association and Oregon Association of the Deaf being two key partners. Their support was necessary to surmount the bill’s state budget fiscal impact in public employee’s insurance plans. In addition, she negotiated with friendly insurance lobbyists to be “neutral” on the bill by appealing to their desire to look good on this kids’ issue and explaining the small number of pediatric cases.

While other insurance companies presented significant opposition, this preliminary work proved fruitful during the 2018 state legislative session. Compelling testimony from parents, children and professionals ensured swift committee passage in the House and Senate, even bypassing the budget committee. HB 4104 passed during its first legislative session, expanding the requirements for hearing aids, adding in requirements for CIs, and expanding professional services, i.e., increasing the number of audiologists.

Updating Gaps in the Revised Law

The revised insurance mandate rolled out slowly. Some commercial plans had to begin coverage right away, while others had an extra year before they had to offer coverage. The insurance division’s guidance was vague, allowing insurance companies to interpret the new rules to their own benefit. Many insurance plans seemed to raise deductibles to offset the new coverage, so families had to continue to pay out of pocket. Audiologists and families remained unclear about what specifically was supposed to be covered. The revised law was an improvement over the existing mandate, but it was not being implemented as intended.

In 2021, the Pacific Northwest (PNW) Chapter of AG Bell formed the Oregon DHH Legislative Group to work collaboratively to find ways to make the insurance coverage mandate more clear for everyone involved, most importantly for children who are deaf and hard of hearing (DHH).

Using her personal connection to Representative Lisa Reynolds, PNW Chapter President Janet Weill invited Rep. Reynolds to meet with the legislative group, and she immediately threw her support behind improving insurance coverage for DHH children. This began another several-year process of discovery and advocacy.

Creating Legislative Change (Again!)

The legislative group worked together to meet with state representatives who would champion their cause. First, a one-page list of talking points provided a quick overview of the issues regarding DHH insurance challenges that had emerged after the passage of the 2018 bill. “A one-pager (max) is critical to starting the conversation. Legislators are busy with literally hundreds of issues. An easy, digestible summary of the issues is key to hooking their interest,” said Doug Baker, chair of the legislative committee.

Second, sustaining interest requires a willingness to add more depth to the conversations over time, providing expertise on the issues as bills are being drafted, and an ability to bring supportive experts, families, and professionals to the conversation as it progresses. The legislative group then began meeting regularly with the state representatives who were willing to not just sponsor, but also champion the bill including Representative Hai Pham, who was the final sponsor of the bill.

Legislative group members visited the offices of legislators, shared the one-pager, and made the case with personal stories from their families. The group also met with individual legislators on Zoom. The meetings and the one-pager showed the importance of early intervention for children’s development, the reduced costs to schools and how these children can work and thrive in the world outside of school.

Third, expert testimony is absolutely necessary to establish the legitimacy of the research being used to support the importance of making changes to existing legislation. The group had to wait until 2023 to introduce their bill during a longer legislative session. That additional time allowed them to build a case and build constituent support with parents, school leaders, audiologists and speech/language professionals.

The legislative effort included building a case statement for the bill, sharing it with legislators, working to build a group of 200 people who wrote supporting letters, organizing expert testimony (including Dr. Atwill and the President of the Oregon Academy of Audiology, Dr. Bryan Greenaway), as well as three families with DHH children.

“This is a team sport AND we always welcome your input – testifying on a bill (in person or remotely), submitting written testimony, or calling/emailing your legislators (your state rep and your state senator) to ask them to vote a certain way on a bill that is important to you,” Rep. Reynolds would say to encourage her constituents to engage in the legislative process. That encouragement proved to be prophetic.

The most compelling testimony often comes from the stories of families. Stories from the heart of a parent worried about their child, and then hearing from a thriving child who was able to succeed because of the support received are often the antidote to concerns expressed over related costs.

All of this work was successful in helping pass the bill out of committee on a unanimous vote. Throughout the subsequent committee hearings, the legislative group continued to send supportive letters, emails, and phone messages. Ultimately, the bill passed with minimal opposition.

Finally, upon passage, it is important to thank the supporters of the bill. The legislative group wrote thank you notes to the sponsors and personally thanked them at the signing ceremony with the Governor. Now the legislative group is poised to take on another round of legislative goals dealing with improving DHH teacher training and the number of teachers in the pipeline. The experience has helped them build a supportive DHH network and its members have felt their efforts came to fruition.

To learn more about the challenges and support needed to effect change, please watch this interview with Rep. Pham.

Shelby Atwill, AuD, is a pediatric audiologist at soundSTART, a non-profit hearing clinic serving children throughout Oregon. Dr. Atwill is also the audiologist on the Oregon Early Hearing Detection and Intervention (EHDI) program team. She is a Board Member of the Pacific Northwest AG Bell Chapter, the Oregon Academy of Audiology and the American Cochlear Implant Alliance.

Doug Baker, Ph.D., is a retired university president and business professor. He started working on deaf and hard of hearing rights issues 30 years ago when his hearing-impaired daughter was denied needed services. He chairs the PNW AGB Legislative Advocacy and Fund-Raising Committees. He also serves as the President of the Big River Community Land Trust Board.

Janet Weil, M.S., is the President of the PNW AG Bell Chapter and is a lifelong AG Bell member. Janet has worked as teacher of the deaf at the Weingarten Children’s Center, San Francisco Hearing and Speech Center, and Principal/Executive Director of Children’s Speech and Hearing Centre of British Columbia.