When my oldest son, Conner, was diagnosed with Usher syndrome more than 20 years ago, I didn’t know a single other family raising a child who had combined vision and hearing loss. I was overwhelmed, and my school district didn’t know what to do. Specialists were hard to find. I wasn’t just grieving the diagnosis — I was grasping for a lifeline.
That lifeline came in the form of Washington’s DeafBlind Program, a federally funded initiative connecting families, educators and service providers with the expertise needed to support these children. Without it, I don’t know where we’d be today.
Washington was recently notified that funding for the Deafblind Program will end Sept. 30 unless an appeal is successful. Seven other states received similar notice. If nothing changes, families will lose critical support.
According to the 2023 National Deafblind Child Count, 305 children in Washington were served by the state — including infants, preschoolers, K‑12 students and transition-age youth. Identifying students who are deafblind is complex, and state deafblind programs play a crucial role in helping families and districts recognize and accurately count these children — data that directly informs funding and policy decisions.
Those 305 children represent classrooms from Seattle to Yakima to the smallest rural districts. Without the program, many schools will be left scrambling, because few have the resources or expertise to meet such rare and complex needs. Behind every number is a family like mine: parents searching for answers, teachers trying to do their best, and children waiting to be seen and supported.
Through this network, my sons — my son Dalton is also deafblind — learned to communicate, move confidently and access educational materials through Braille, tactile graphics and assistive technology.
Because of the DeafBlind Program, our family learned how to navigate the process for special education services, access qualified teachers and advocate for interveners, the paraprofessionals with specialized training to support deafblind students.
Today, Conner works for Alaska Airlines and is thriving in adulthood. His younger brother, Dalton, is a high school senior preparing for college. He takes college classes and leads a nonprofit that raises awareness of Usher syndrome. While I celebrate my sons’ achievements, I think about the newly diagnosed families I support each week. What will happen to their children if this support disappears?
Across Washington, children with rare disorders are learning to read, socialize and dream big because someone believed in their potential. Because someone from the DeafBlind Program came to their Individualized Education Plan meeting. I remember one of those early meetings when a specialist helped interpret medical reports, drafted goals reflecting my son’s communication style and coached the team on how to include him in a meaningful way. That moment changed the trajectory of his education — and ours.
That someone is often a project coordinator, specialist or family engagement lead whose salary is funded through federal grants. Those grants are not extras. They are lifelines. And yet, those lifelines are now at risk.
Discontinuing the Washington DeafBlind Program would not just eliminate funding. It would cut off access to a network of expertise that has taken decades to build. Deafblindness is a rare disability, and most districts, especially smaller ones, simply do not have the resources or staff to meet these complex needs on their own.
This isn’t just about Washington. It’s about what kind of nation we are.
Will we uphold the promise of Free Appropriate Public Education for every child, knowing that my sons’ success depended on that promise being kept? Will we continue to invest in preparing personnel who understand the complexities of deafblindness? Will we stand with families like mine — families who have built lives of possibility because someone believed we mattered?
We call on national decision-makers to reconsider this discontinuation. Our children deserve more than a budget cut. They deserve a future.
When we invest in specialized support, we don’t just change one life. We create pathways to inclusive classrooms, competitive employment, independent living and communities where all children, regardless of their disability, can belong and succeed.
I know. I’ve lived it.
