The Rapid Unraveling of Disability Protections: What's Happening and What's Next

I have never been someone who speaks about anything remotely political. It makes me uncomfortable, and I don’t like placing blame. But I can’t stay silent anymore. I know others may not agree with my views, but I have to speak up—not just for my kids, but for all the families I help. As a mother of three children with disabilities and as a special education researcher, I find myself struggling to sleep at night. The weight of my worries is heavy.

So much has changed in just a few short weeks. Protections that families like mine rely on are being challenged, and progress we’ve fought so hard for is at risk of being undone. We cannot let this happen. Below are some of the most pressing concerns affecting children with disabilities, families, and the professionals who support them.

What Has Happened So Far in Disability and Education

Before I dive into these issues, I want to acknowledge something personal. I am also scared for my own family, for LGBTQ+ protections, and for the rights of so many others. There are so many threats happening all at once, but for now, in this blog, I am choosing to focus on disability and education. This is where my lived experience and professional expertise intersect, and I need to shine a light on these critical issues.

Proposed Changes to the Department of Education

There have been discussions about significant changes—or even the potential elimination—of the Department of Education. This is terrifying. It’s already hard enough to secure a Free and Appropriate Public Education (FAPE) for children with disabilities, and without federal oversight, it could become nearly impossible.

The Department of Education plays a crucial role in ensuring educational equity, enforcing disability rights, and funding special education programs. It oversees Title I funding, which supports schools in low-income communities, ensuring that all students—regardless of socioeconomic status—have access to quality education. It also administers grants that provide resources for special education services, teacher training, and disability-related research. Without these programs, children with disabilities and those in underfunded schools will face even greater obstacles to success.

Without it, who will enforce these protections? Who will hold states accountable for providing the services that children with disabilities are entitled to? The uncertainty of this situation is overwhelming and deeply distressing. We cannot allow this to happen. Without federal oversight, the quality of special education services could vary drastically from state to state, leaving countless children without the support they need to succeed and leaving parents with nowhere to turn when their children are denied services.

Medicaid and Its Impact

Medicaid is a lifeline for so many families in the deafblind and low-incidence disability community. It provides critical healthcare services, support programs, and assistive technologies that make independent living possible. The recent discussions about cutting or restructuring Medicaid are terrifying. If these changes move forward, thousands of families will lose access to essential medical care, therapy, and support services. For those with rare diseases like deafblindness, losing Medicaid would be devastating, stripping away necessary care and leaving many families without options. We must fight to protect this essential program.

Section 504 Protections

Section 504 ensures that students with disabilities have equal access to education. Recently, lawsuits have been filed challenging these protections, and while they do not directly impact my state, the implications are nationwide. Without Section 504, children with disabilities may lose critical accommodations that allow them to succeed in school. The thought of losing this essential protection fills me with dread. It would mean fewer opportunities for inclusion, fewer services, and more barriers for children who are already facing so much.

At the core, this just makes me sad because it eats away at all the progress we've made toward inclusion. We've worked so hard to build systems that welcome and support children with disabilities, and now, it feels like those hard-won rights are being chipped away. And if Section 504 is not safe, is IDEA next? We must not sit back and wait for this to happen—we need to act now.

NIH Grants and Medical Research

With the new caps on indirect cost rates for NIH grants, medical research is slowing down, particularly for rare diseases. As a past grant administrator, I know that universities and hospitals rely heavily on these overhead dollars to fund research. They built these funds into their budgets, and now, suddenly, those financial structures are at risk. This means fewer studies, fewer breakthroughs, and slower progress for diseases like Usher syndrome and other rare conditions. But it's not just rare diseases—this also impacts cancer research and so many other areas of medicine. Just when we were making headway, funding restrictions threaten to halt the advancements we so desperately need across all fields of medical research. We must demand that this funding be restored.

Diversity, Equity, and Inclusion (DEI) Programs

DEI programs were designed to ensure that all individuals, regardless of their background, ability, or identity, have fair opportunities. The recent elimination of DEI programs makes it harder for people like my son, Conner, to secure a job. DEI wasn’t about giving anyone an unfair advantage—it was about removing barriers. Without it, I worry that qualified individuals, particularly those with disabilities, will face more discrimination in the workforce. These programs helped level the playing field, and now, that safety net is gone.

Additionally, accessibility—especially digital accessibility—is rapidly deteriorating. In just three short weeks, many online resources are no longer compatible with screen readers, making it significantly harder for individuals with vision loss and other disabilities to navigate essential information. And it's only going to get worse. So many people rely on digital accessibility for education, employment, and everyday tasks, and yet, these necessary accommodations are being stripped away without consideration for the impact on the disability community. This is unacceptable.

Pulling Federal Funding

Federal grants that support my colleagues’ work—work that helps families like mine—are being pulled or placed under uncertainty. Some jobs may be lost. We were told our work with the Deafblind Projects is safe right now—but is anything really safe anymore? With fewer federal resources, programs designed to support children with disabilities, educators, and researchers are at risk of being cut, leaving families without crucial assistance. We cannot stand by and let this happen.

These are just the changes that have taken place in a few short weeks. I fear for what’s to come.

What Is Next? We Must Act Now

I keep asking myself—what happens next? If these changes have come so quickly, what will the coming months and years bring? Will IDEA protections be challenged? Will funding for special education be cut even further? Will families who rely on crucial support systems be left without help? We cannot afford to wait and find out. We have to take action.

I worry about my children, about my friends, and about the families I work with every day. I worry about our community, about those with rare diseases, about the deafblind community, about the educators and researchers who dedicate their lives to making things better. I feel the uncertainty creeping in, and it’s overwhelming. But I also know that staying silent is not an option. We have to keep asking questions, keep pushing for protections, and keep advocating for those who need it most.

If you’re feeling this way too, I see you. You’re not alone. And I truly believe that love, community, and resilience will always be stronger than fear.

Let’s keep showing up. Let’s keep fighting for our kids. Let’s keep believing that a better future is still possible. Through it all, we need to spread kindness and love because we never know what someone else is feeling or going through.

One way we can make a difference is by reaching out to our legislators. Call, email, or meet with them to share your concerns about these critical issues. Let them know why protections like Section 504 and IDEA matter. Advocacy starts with our voices, and together, we can ensure that our children and families are not forgotten.

Because they deserve nothing less. They deserve a bright future—we must make sure they have it.