“What Happens If We Go Backward?”: A Mother’s Plea to Protect Disability Rights

It’s taken me a few weeks to find the words. Honestly, I’ve been grieving—grieving the loss of expertise, of stability, and of the systems that families like mine have spent decades helping to build.

Today, I spoke at a national press conference to share what’s at stake for families like mine. I wasn’t there as a special educator or policy expert—I was there as a mom. A mom of four children, two who are deafblind.

What follows is the statement I shared. It’s deeply personal, and I hope it helps others understand why federal protections like IDEA aren’t just policy—they are lifelines. And they should never be up for debate.

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My name is Lanya Elsa, and I’m the mom of four children—three with disabilities. I live in Washington state. Two of my sons are deafblind due to Usher syndrome, a rare genetic condition that causes combined hearing and vision loss.

Before I begin, I need to say this: it took me some time to get here. Not physically—to this microphone—but emotionally. Because for the last few weeks, I’ve been grieving. Grieving the fact that families like mine are once again being asked to fight for what should never have been up for debate: our children’s right to be seen, supported, and included.

All families of children with disabilities are worried right now.

We’re navigating systems that were never built with our children in mind.

Our kids need specialized supports—and those supports are disappearing.

When my sons were first diagnosed—first as deaf, and then with a progressive vision loss that would eventually lead to blindness—I felt lost and alone. 

Deafblindness affects a small number of students nationwide, which means it’s not well understood by many educators or school systems. Not other parents, not even extended family. I didn’t know what it meant either. I only knew that our lives were about to change in ways I couldn’t yet imagine. I had no roadmap, and no one who truly understood what this journey would mean—not just in our daily routines, but in how it would shape every part of our lives.

What I did have was hope—hope for my son's futures. 

My boys started early intervention, and eventually, I found my people. We were connected to a small group of experts who specialized in deafblindness. They taught me how to help my children communicate, how to advocate for their needs, and how to navigate special education systems. Most importantly, they saw my boys not as broken, but as brilliant, capable children who just needed the right supports to thrive. 

Protections like IDEA and the ADA were fought for with sacrifice and determination by the disability community. The fact that they’re now under threat is a painful step backward. 

Families of children with low-incidence disabilities rely on federally funded programs housed within the Department of Education—programs that provide the specialized knowledge most states and districts simply do not have. 

The deafblind community, for example, fought for decades to establish national and state-level programs staffed by experts who understand the unique and complex needs of this population. These programs don’t just provide technical assistance—they fill critical gaps in support, access, and equity for families like mine.

But today, that support has been wiped out. Every single one of those federally funded deafblind experts has been laid off. All of them. The very people who once helped families like mine find light in the dark—literally and figuratively—are gone. Their absence isn’t just a staffing change—it puts everything we’ve worked for at risk.

This reality has left families terrified. Because when expertise and oversight disappear, opportunity disappears with it. My kids deserve better.

My youngest son, Dalton, is 16 and thriving. He’s a high school senior, takes college classes, and works part-time at our local grocery store. He plans to become a financial advisor one day—and because of the education and support he’s received, that dream is within reach. 

My oldest son, Conner, is 26, a college graduate, and now proudly employed at Alaska Airlines. His success was, in part, made possible through our state’s Vocational Rehabilitation (VR) program, which helped him build skills, gain confidence, and find meaningful employment. Those programs led him to not just find a job—but independence and pride.

And yet, VR programs are also now at risk. What will that mean for individuals with disabilities like Conner who want to work, contribute, and be part of their communities, but just need a little support?

And I keep coming back to this question: What happens if we go backward?

If my children had been born before IDEA, they likely would have been segregated from their peers, or sent to live in institutions, or worse. The opportunities they’ve had—to attend school, go to college, and live and work independently—simply would not have existed.

IDEA made all of that possible. It created a world where my sons could be included, supported, and valued for who they are.

And yet, there are proposals not only to move IDEA oversight to the Department of Health and Human Services, but also to shift more responsibility to states. I want to be clear: that won’t work either. States and local districts do not have the depth of expertise or the nationwide perspective needed to support children with disabilities, especially those like mine with low-incidence disabilities. Families like mine will fall through the cracks.

I fear we will return to a mindset that sees children like mine as something to be fixed—as medical cases instead of children with dreams.

That is the exact opposite of the message I want my sons to carry with them.

They don’t need to be fixed. They are amazing, capable, thriving young men who show us what’s possible when the right supports are in place—when they have opportunities.

Families like mine have fought too hard, for too long, to be seen. And I worry that if we lose these laws, programs and the expertise behind them, the next generation of children with disabilities will lose something even greater: the belief that they belong.

My youngest son is a senior in high school—maybe he won’t be as impacted by all of this. But I am also a family support professional, and I speak with newly diagnosed families all the time.

What keeps me up at night is what this will mean for them—for their children.

Twenty-five years later, I still remember the words—“Your child will be deafblind”—like it was yesterday.

I shudder to think about what would have happened if I had heard those words and there had been no resources, no support, and it was up to us to figure it out alone.

That is what I fear.

All kids deserve the same opportunities and support that my kids had.

This is not a partisan issue. This is a basic human rights issue.

Thank you for listening. My hope in sharing our story today is that you understand what’s at stake—not just for my children, but for all children.

Because when we value and include those with disabilities, we build something better for everyone.