A Community Under Threat: Why Families Must Act Now to Save Deafblind Programs

On Friday, September 5, 2025, families like mine received news that shook our entire community. The U.S. Department of Education’s Office of Special Education and Rehabilitative Services (OSERS) announced that four State Deafblind Projects will not have their funding renewed. Unless an appeal is successful, these programs will end on September 30, 2025.

The projects slated for elimination are:

• Washington State Deafblind Program

• Oregon State Deafblind Project

• Wisconsin State Deafblind Project

• New England Consortium, which serves Massachusetts, Connecticut, Maine, New Hampshire, and Vermont

  
  

At the same time, we learned of cuts to Braille preparation programs and interpreter training programs—foundational pipelines for the professionals who make education accessible to students with sensory disabilities.

This is not just disappointing news. It’s devastating for families, educators, and children who are deafblind across eight states. And we only have seven days to make our voices heard.

Why These Programs Matter

To understand the gravity of this decision, you need to know what State Deafblind Projects do. These programs:

• Help identify students who are deafblind and ensure accurate counts. This data shapes funding and policy.

• Provide training and technical assistance for school teams, connecting them with teachers of the visually impaired, orientation & mobility specialists, and interveners.

• Guide families through early intervention, IEP meetings, and transition planning—services that most districts cannot provide on their own.

• Reduce isolation by connecting families to one another and to national resources.

  
  

Without these projects, families will be left to navigate in isolation. Teachers will be asked to serve children without the training or support to do so. And newly diagnosed children—those who most need early and accurate intervention—will be the first to slip through the cracks.

My Family’s Story

I know this because I have lived it.

When my oldest son, Conner, was diagnosed with Usher syndrome over 20 years ago, I didn’t know a single other family raising a child who was deafblind. 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 the Washington State Deafblind Program.

Because of that program, we learned how to navigate the IEP process. We had access to trained professionals who could show us how to adapt educational materials, introduce assistive technology, and advocate for communication support. We weren’t alone anymore.

And because of those supports:

• Conner is now employed by Alaska Airlines, thriving in adulthood.

• My youngest, Dalton, is a high school senior taking college classes, working at our local grocery store, on the board of our nonprofit, and planning for his future.

  
  

Their successes are living proof of what is possible when families have access to expertise and support.

What I See Every Day

Today, I work as a family support professional with families of children who are deafblind. Often, I meet newly diagnosed families who don’t know where to turn. They are scared, overwhelmed, and desperate for answers.

I also hear stories that break my heart. Just last week, I learned about another student—this is sadly more common than I would like—who is deafblind and spends his days sitting in the back of a classroom without any communication access, simply because the team doesn’t know how to support him.

This is the reality when schools don’t have access to specialized training and resources.

And part of the challenge is that deafblindness is a spectrum. Most people, when they hear “deafblind,” think only of Helen Keller. But children with combined vision and hearing loss present in a wide variety of ways. Some use braille. Some use tactile sign language. Some use speech paired with hearing aids or cochlear implants. Others rely on assistive technology. Each child’s profile is unique, and their needs are complex.

Without State Deafblind Projects, these nuances are overlooked. Children are too often misunderstood, misdiagnosed, or left without access to education at all.

Why This Is Devastating to Our Community

According to the 2023 National Deafblind Child Count, 305 children in Washington alone currently qualify for services through the DeafBlind Project. Almost 1000 more across Oregon, Wisconsin, and New England rely on their state projects. Nationwide, more than 10,000 children are identified as deafblind.

But deafblindness is a low-incidence disability. No one district can manage this alone. That’s why state projects exist: to provide the expertise that schools and families cannot generate on their own.

Eliminating these programs cuts off a network of support that has taken decades to build. And it leaves families—especially those newly diagnosed—facing a future without the resources they need to help their children thrive.

What You Can Do Right Now

We don’t have much time. Appeals are due this Friday. Here’s how families and educators can take action:

1. Write a Letter of Impact

Your story matters. A short, heartfelt letter describing what the Deafblind Project has meant for your child or school team can make a difference. You can email it to me and I'll forward it along if you don't have the contact information for your state (lanyaelsa@gmail.com)

Family Letter Template:

Your Name
Address

Date

TO WHOM IT MAY CONCERN:

I am writing in support of my DeafBlind project, which provides technical assistance to children, families, and professionals working with children who are DeafBlind like my child. This DeafBlind project is part of a national network serving over 10,000 children according to the 2023 National DeafBlind Child Count. 

Recently,  DeafBlind projects that represent OR, WA, MA, ME, NH, VT, CT, and WI received notices that their grants would be discontinued. These projects are in their 3rd year of funding within a 5 year cycle. All of these projects already have activities planned for family weekends, teacher trainings, and outreach to local schools that are now being halted unless the U.S. Department of Education reverses this decision. 

State DeafBlind Projects play a critical role in helping to identify these students, ensure accurate   child counts, and connect families and educators to essential services. Deafblindness is one of the rarest disabilities. Our children and young adults are highly heterogeneous and many have complex needs. All individuals who are DeafBlind require specialized personnel who have knowledge to support communication, access, and literacy. Without these technical assistance programs, families and schools will lose access to expertise that cannot be replicated at the local level.

My DeafBlind project provides [tell how your project has helped your child].

Please protect this program for my child and all of the others in our state or region by asking the Department of Education to maintain their Congressionally approved funding. 

Thank you,

Your Name

2. Share the Press Release

I’ve prepared a press release that outlines the issue and what’s at stake. Share it with your local newspapers, school districts, and networks or create your own version.

3. Join the Family Town Hall Tonight

The National Family Association for DeafBlind (NFADB) is hosting a Family Town Hall on Wednesday, Sept 10, at 4:30 pm PT / 7:30 pm ET. Register here. Educators and families please join.

This is a chance to learn more, coordinate efforts, and take action together.

4. Spread the Word

Talk with your legislators. Tell your networks. Post on social media. Use hashtags like #DeafBlindKids #ProtectDeafBlindServices #EveryChildDeservesSupport. Ask friends and allies to amplify your story.

The Urgency of Now

We only have seven days.

Seven days to tell our stories. Seven days to show the Department of Education what these programs mean to families. Seven days to fight for the children sitting in classrooms right now without communication access.

My sons’ successes show what is possible when children have the right supports. But every week I meet families whose children may never get that chance if these programs disappear.

This is our moment to act. Please—write your letter, join the Town Hall, and help spread the word. Together, we can protect these programs and ensure that every child who is deafblind has the chance to thrive.

About the Author

Lanya Elsa, PhD, is a mother of four, a special education researcher, and a family support professional. Two of her sons are deafblind due to Usher syndrome. She lives in Sammamish, Washington.