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Don't Roll Back Disability Rights!

  • Writer: Meg O'Connell
    Meg O'Connell
  • Feb 4
  • 3 min read

Updated: Feb 5

The abandoned Central State Hospital, in Milledgeville, GA. In the 1800's the facility was called the Georgia Lunatic, Idiot, Epileptic Asylum.
The abandoned Central State Hospital, in Milledgeville, GA. In the 1800's the facility was called the Georgia Lunatic, Idiot, Epileptic Asylum.

Nine states are suing to challenge Section 504 of the Rehabilitation Act, specifically the rule requiring services for people with disabilities in the most integrated setting—in their homes, their communities, not institutions.


This isn’t just a legal debate. It is about where disabled people live, who supports them, and who makes those decisions.


What Section 504 Means for Families

Section 504 says organizations receiving federal funds—like hospitals, clinics, and nursing homes—cannot discriminate against people with disabilities. Courts have ruled this means services should happen at home or in the community whenever possible, not automatically in facilities far from family and friends.


If this lawsuit succeeds, states could more easily say:

  • “We don’t have to fund in-home care.”

  • “Your only option is a nursing home or institution.”


For families, that’s not freedom of choice. It’s a return to limited options and separation not only from their families but limiting the ability to participate in the community.


A Painful History We Can’t Forget


We’ve seen what happens when institutions become the default. The most famous example of systemic failure for people with disabilities is the Willowbrook State School in New York. Willowbrook was exposed by Geraldo Rivera in 1972— showing how children and adults were forced to live in neglect, abuse, and isolation.


While the expose was focused on Willowbrook, ALL 50 states had institutions that housed people with disabilities. The horror exposed by the Willowbrook documentary sparked reforms and the push for community living under Section 504. Before anyone advocates for the return to institutions they should be required to watch this documentary.


Even today, facilities often mean less oversight, fewer visitors, and less say over daily life. Community services let people stay connected to jobs, schools, faith communities, and loved ones.


The Activists Who Made This Possible


We must fight to continue the work done by disability activists and leaders that came before us.


Ed Roberts, who needed an iron lung to breathe, started the first Center for Independent Living. He showed disabled people could be educated, learn skills, contribute at work and thrive in their communities with the right support.


Judy Heumann who is known as the "mother of the disability rights movement" led the 1977 504 sit-ins, occupying a federal building for nearly a month until regulations were signed creating better access and equality for people with disabilities.


They both fought for one core idea: disabled people should control their own lives and where they receive care.


Practical Reasons to Protect Community Living


This isn’t just moral issue—it is a practical one:

  • Cost-effective. Community services are often cheaper than staffing large institutions around the clock.

  • Better outcomes. People in communities have higher employment rates, better health, and stronger social ties.

  • Family relief. Home care prevents families from becoming full-time, unpaid caregivers at the cost of their own jobs and well-being.


Let's be clear. Weakening Section 504 doesn’t save money. It shifts costs and risks back to families and disabled people.


What You Can Do Right Now


We can protect these hard-won rights. Here are three steps:

  1. Share the story. Tell friends and family: “Nine states want to make institutions the default again. Section 504 protects community living.”

  2. Contact your representatives. If you live in Alaska, Florida, Indiana, Kansas, Louisiana, Missouri, Montana, South Dakota, or Texas, ask your state and federal officials to defend Section 504’s integration protections.

  3. Support disability-led groups. Donate to or amplify Centers for Independent Living, Yes! Access, and organizations like DREDF that are fighting this lawsuit.


The Promise We Must Keep


Ed Roberts, Judy Heumann, and the Willowbrook families didn’t fight for nothing. They built a world where disabled people could choose their homes, their helpers, and how they live their lives.


Nine states challenging that progress puts decades of advocacy at risk. Let’s stand with disabled people and their families to protect community living.


This isn’t just their fight—it’s ours too.


 

 
 
 
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