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Holding the Line: A Mother’s View of What’s at Stake for Disability Rights

By Lanya Elsa


It’s taken me some time to write this. Honestly, I needed to step back, breathe, and take care of myself and my family. What’s happening in our education system has shaken me to my core. This isn’t just a sprint—it’s a marathon. And it’s far from over.


I’m deeply grateful that the DeafBlind projects in Washington, Oregon, Wisconsin, and the New England Consortium (serving several northeastern states) will continue to receive support this year—but that support comes through rerouted funding via the National Center on Deaf-Blindness (NCDB), not direct project renewals. These states appealed after being denied funding, and their appeals were rejected. The reroute is a temporary patch, not a restoration.


And what makes this worse is why it happened. These state projects were penalized for their DEI responses—answers to questions they were required to complete. Programs that serve some of the most vulnerable children in the country were punished for affirming inclusion. That should never happen in a nation that claims to value equity or education.


Undoing Decades of Progress

When Congress passed the Individuals with Disabilities Education Act (IDEA) nearly fifty years ago, it was revolutionary. For the first time in U.S. history, children with disabilities were granted the legal right to attend public school. Before IDEA, more than 1.7 million children were excluded entirely, and another 3 million were warehoused in segregated programs offering little instruction.

IDEA didn’t just open doors—it built systems of accountability and inclusion.

IDEA didn’t just open doors—it built systems: procedural safeguards, due-process protections, individualized education programs (IEPs), and federal oversight to ensure accountability. It established that the U.S. Department of Education would hold states responsible for compliance, not merely through guidance but through enforceable monitoring.


For decades, we saw slow but steady progress:


  • Schools began to include students with disabilities in general classrooms.

  • Teachers received training in communication access, technology, and differentiation.

  • Families gained a genuine seat at the decision-making table.

  • Experts within the Department of Education ensured that IDEA’s promise translated into practice.


That system wasn’t perfect—but it worked because it was structured and funded. It relied on national coordination, specialized knowledge, and consistent enforcement from the top down.


Now, those safeguards are crumbling.


The recent layoffs at the U.S. Department of Education have gutted offices responsible for ensuring IDEA compliance. Staff who once guided states through complex legal and technical issues are gone. Without their oversight, who ensures that states fulfill their obligations? Without federal accountability, why would they?


When Oversight Disappears, So Does Compliance

I often hear people say, “Leave it to the states—they know their students best.” As both a researcher and a parent, I know that isn’t true. Not all states protect children equally.

IDEA is only as strong as its enforcement.

Some have invested deeply in inclusive practices and partnerships with families. Others barely meet the legal minimums. When oversight weakens and resources shrink, children with complex needs—like those who are deafblind—are the first to lose services.


IDEA is only as strong as its enforcement. When the federal government lacks the staff, expertise, and will to monitor compliance, states interpret the law on their own. Districts begin to cut corners—not always out of malice, but from confusion or cost. Once that pattern takes hold, the rights of children with disabilities depend on geography and politics rather than law.

When oversight weakens, children’s rights become a matter of geography—not justice.

And this erosion is magnified by chronic underfunding. Congress pledged to cover 40 percent of special-education costs; most years, it contributes around 13 percent. Now we face a perfect storm:


  • Weakened federal oversight

  • Inconsistent state accountability

  • Insufficient funding


Together, these forces threaten to undo everything IDEA promised.


If we dismantle the systems that ensure compliance, IDEA becomes little more than words on paper. Children like Conner and Dalton—who have thrived precisely because IDEA was enforced—will have far fewer guarantees in the years ahead.


Conner graduated from college and is working successfully. Dalton is a senior in high school, dual-enrolled in college courses, working part-time, and planning for his next steps. That’s what success looks like when IDEA works—when the system is resourced, monitored, and believed in. Remove those structures, and that success becomes harder to replicate.

My sons’ success is not a miracle—it’s what happens when IDEA is honored and enforced.

This isn’t an abstract policy issue. It’s a question of whether we still believe that education is a right for every child, or whether we’re willing to let fifty different states decide who counts and who doesn’t.


The Shift Toward HHS: A Dangerous Message

The growing discussion about moving the U.S. Department of Education under the Department of Health and Human Services (HHS) terrifies me. On paper, it looks like an administrative change. In practice, it’s philosophical—a shift from education as a civil right to disability as a medical condition.

If that happens, what message does it send to my sons? That they need to be fixed. That their existence is a problem to solve rather than a life to value.

My children do not need to be fixed. Society needs to be designed for their success.

My children are not broken. Society simply wasn’t built with them in mind. The barriers they face—whether in communication, access, or opportunity—aren’t evidence of their failure; they’re evidence of a system that still hasn’t caught up to true inclusion.


And yet, in spite of that, they have thrived. Conner graduated college and works in a field he loves. Dalton, a high-school senior taking college courses, holds a job and is preparing for college. Their success isn’t a miracle—it’s the product of supports, advocacy, and a system that once believed in their right to belong.


If those systems crumble—if expertise is lost, oversight weakened, and education redefined as “care”—we will lose the conditions that make this kind of success possible for future generations.

We risk building a future where disability is treated, not taught—and where belonging is conditional.

The Broader Crisis

This isn’t just about deafblindness. It’s about all children with disabilities.


The mass layoffs within the Department of Education have dismantled offices charged with enforcing civil rights and guiding local districts. The specialists who understand complex conditions, interpret federal law, and advise states—many of them are gone.


Without specialized oversight, states may deprioritize complex disabilities. Without federal experts, local teams are left to guess. Without accountability, rights become optional. Families will once again have to fight, IEP by IEP, to secure what the law already promised.

When the system stops protecting our children, families must fight to do it themselves.

What We Must Do Now

We cannot lose focus, even when we are weary.

  1. Defend IDEA as a civil-rights law. Oppose any move that reframes disability under a medical model. Our children deserve education, access, and belonging—not pity or correction.

  2. Protect and rebuild expertise. Demand restoration of positions that serve children with low-incidence disabilities. The knowledge lost in these layoffs must be replaced, not erased.

  3. Oppose dismantling of the Department of Education’s special education structure. Speak out against the mass layoffs, restructuring, and any proposal to move IDEA oversight to HHS. These shifts threaten to unravel the federal protections that make inclusion possible.

  4. Advocate for permanent funding. The four DeafBlind projects must be fully funded for the rest of the grant cycle. Temporary rerouting for one year is not enough; sustainable, state-based systems are essential.

  5. Tell your stories. My journey from “just a mom” to advocate taught me that storytelling is policy work. When families share real examples of what success looks like, it changes minds.

Storytelling is policy work. When families speak, systems listen.

A Blessing and a Warning

I am grateful for this year’s reprieve—for the rerouted DeafBlind funding, for the families and professionals who refused to give up.


But gratitude cannot silence fear. This isn’t stability—it’s survival.


We are standing at a crossroads. We can either continue the promise of IDEA—an America that values inclusion and education for all children—or slide backward into segregation and silence.

We can’t let fifty years of progress unravel on our watch.

My sons’ stories prove that inclusion works. They are thriving not because society fixed them, but because they were given access, opportunity, and belief. That is the legacy of IDEA—and that is what’s at stake now.


This year’s outcome is a blessing. But it’s also a warning.And for families like mine, silence is not an option.



FURTHER READING:


Deafblind funding at risk


Deafblind funding restored


Layoffs at the U.S. Department of Education (ED)


Move of ED to HHS (or shifting oversight of special education)


 
 
 

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