The Unintended Consequences of Systemic Changes on Caregivers

Feeling under attack by a system that is supposed to help, support, and protect is a terrible experience for anyone. But for a caregiver of an individual with special needs, the consequences can be particularly devastating. The unfortunate reality is that many professionals in this field—those who have taken jobs to assist individuals with special needs—can inadvertently or even intentionally act in ways that retraumatize caregivers.

This happens because those in positions of power hold the authority to make decisions that profoundly impact not only individuals with complex needs but also the families who love, support, and advocate for them. Too often, I find myself feeling threatened—not physically, but emotionally and mentally. Threatened by the fear that no one will understand what we need, that no one will appreciate the complexity of our situation, and that no one will care how desperate we are for support.

I feel minimized and unheard when those in power make sweeping decisions that drastically alter my day-to-day life without truly understanding what that life entails. This is not about politics, and I have no interest in turning this into a left vs. right debate. My concern is simple: when policymakers introduce radical changes to systems meant to provide assistance to those in need, they risk traumatizing the very people those systems are supposed to protect.

These past few weeks, my PTSD has been in high gear. Why? Because the ongoing discussions, speculation, and rhetoric about dismantling the Department of Education (DOE) are not just alarming—they are profoundly destabilizing.

Now, I know better than to believe everything I hear in the news. I understand that social media isn’t always reliable, and I do my own research. But that doesn’t change the fact that the constant bombardment of talk about the DOE’s potential dissolution has real and immediate consequences for families like mine.

For years, I have been researching, exploring, and learning about what the future holds for my daughter, Sydney. Without sharing too many details, I can tell you that the outlook is incredibly bleak. Of course, every state is different, and every individual with special needs has unique circumstances, but where we live, the situation is particularly challenging.

In order to even begin to create the possibility of an independent future for Sydney, I have spent years working tirelessly—and I do not use that word lightly—to secure the resources she needs. Much of this depends on the school district’s willingness and ability to support and fund essential services, which, legally and structurally, falls under their responsibility.

It took years of meetings, discussions, research, and countless hours of educating myself and others to get Sydney’s team on the same page. I have moved mountains to get to this point—and I am not one to toot my own horn. But now, with the unsettling noise surrounding the DOE, all my hard work could be undone. Sydney’s future, which I fought so hard to secure, is suddenly uncertain.

The Department of Education sets the framework for funding and policy decisions at the school level. If the DOE is dismantled, everything that follows—state and local education budgets, school resources, and special education support—could be thrown into chaos. It’s a trickle-down effect, and families like mine would feel the impact immediately.

I am doing my best to stay present, to take this one step at a time, and to wait and see how things unfold. But once again, I find myself in a position of feeling threatened—threatened by people who have no idea what it is like to be me, no inkling of what it takes to be a caregiver for an individual with profound needs.

Yes, I recognize that our systems desperately need reform. But there has to be a better way—one that doesn’t traumatize the very citizens these systems are meant to serve.