A Loss for Accessibility: 17 States Sue to Repeal Section 504

“Section 504 is the reason why accommodations exist at school—and I was just able to receive the two I need to pursue my education—the ability to use the bathroom whenever I need to, considering the paralysis of my bowels and bladder, and the ability to turn in work on a later date due to my infusion schedule. Now, I worry my ability to access my education is at risk.” —Landy Thomas, SRNA member and Program Associate.

SRNA represents and supports those with rare neuroimmune disorders. Our community is made up of thousands of distinct stories—stories of people who are passionate, genuine, and complex, and many people who also live with disabilities. The conditions we represent, Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), and Transverse Myelitis (TM), can lead to becoming disabled due to cognitive, visual, or other physical changes. Adapting to being disabled can be difficult, as disabled people must navigate life differently than those who are non-disabled.

This is why accessibility is important—in order for a person with a disability to be able to have the same level of independence and autonomy as those without a disability, they utilize adaptive tools. By using a wheelchair, a person can have mobility even if they cannot stand or walk for long distances. By using an elevator, a person is able to go up and down floors even if they are unable to hold their balance or exert physical effort. By using an automatic door, a person is able to exit or enter a building even if they do not have use of their arms or cannot push a heavy object. And these are just examples of the use of adaptive tools to manage physical disabilities—there are so many other types of disabilities.

Full participation in school, work, and public life is not dependent only on the disabled person’s ability to adapt, but on the accessibility of the space. In the United States, legislation has been passed to ensure people with disabilities have equal access to opportunities. Section 504 of the Rehabilitation Act of 1973 is one such piece of legislation which ensures places that receive federal funding or accept Medicare, such as schools, hospitals, and doctors’ offices, cannot discriminate against people with disabilities.

In February of 2025, seventeen states sued the United States government to repeal Section 504. If successful, people with disabilities in the United States will lose part of their rights, meaning that schools and medical facilities that receive federal funding will no longer be legally required to provide accommodations.

The loss of this legislation would negatively impact students. Life with a disability can be incredibly hard. Attempting to pursue an education while managing doctor’s appointments, hospitalizations, and ongoing symptoms and disabilities is impossible for many in our community and in other disabled communities without accommodations. Section 504 ensures the ability to have a flexible due date if a person’s health takes a turn or the ability to receive an audio-version of a PowerPoint slide if a person is blind. Without accommodations, a person who is blind, a person whose life is in flux due to chronic illness, and most other people with disabilities cannot access education. The loss of Section 504 would be devastating. It would mean the difference between whether someone could or couldn’t pursue their dreams.

Landy Thomas, SRNA member and Program Associate, again shares her perspective:

“After attending last year’s Quality of Life Family Camp and hearing the story of families attempting to keep their children in school despite the difficulties their child with a rare neuroimmune disorder faces, I worked on developing and publishing the SRNA Back-To-School kit, which included a step-by-step guide to getting accommodations for a child with a disability. As someone who grew up with NMOSD, I recognized the need for this kit—I too was disabled and had such a hard time getting my education, spending a third of the school year hospitalized, but now, with Section 504 potentially being repealed in seventeen states, I fear that the life these kids are leading will become exponentially harder.”

This law is also foundational to the Americans with Disabilities Act (ADA) passed in 1990, a comprehensive law that prohibits discrimination against people with disabilities in several areas, including employment, transportation, public accommodations, communications and access to state and local governments’ programs and services. Considering the similarities between the ADA and Section 504, this may have further ramifications impacting the ADA, which would fundamentally change the treatment of those with disabilities as a marginalized group.

As the National Organization for Rare Disorders (NORD), of which SRNA is a member, puts it in their statement, “In times of change, the rare disease community’s voice must remain at the forefront of discussions that shape policies impacting medical and scientific research and discovery as well as access to medical care and treatments.” As a part of the rare disease community, we amplify the stories of people diagnosed with rare neuroimmune disorders to raise awareness. These stories make an impact when they reach policymakers and government officials, ensuring no one in the SRNA community face discrimination due to their disabilities.