09/25/2026
The federal government just removed some of the clearest rules we had protecting disabled people from being pushed into institutions when they could live at home with the right support.
The Section 504 rules were very specific about what states and other programs receiving federal health funding couldn’t do when their policies were putting disabled people at serious risk of institutionalization.
For families like ours, one of the easiest examples is nursing.
A state never has to tell you, “Your child has to live in a facility.” It can simply not provide enough nursing for your child to safely live at home. Technically, you’re still free to keep your child home, but if the care your child needs is only realistically available in an institution, that isn’t much of a choice.
The rules that were just struck down specifically addressed that problem. They addressed making services easier to get in an institution than at home, putting restrictions on community services that weren’t placed on institutional services, and, importantly, situations where someone wasn’t institutionalized yet but the way the system was operating put them at serious risk of ending up there.
Those specific federal rules are now gone nationwide.
And that matters a lot in states where home and community-based services are already underfunded. A state doesn’t have to openly decide that disabled children or adults should live in institutions. If it doesn’t adequately fund the nursing, personal care, providers, and other services people need to stay home, the result can be that institutional care is available while actually living in the community becomes impossible.
For families like mine, this is what scares me. The question isn’t just whether Landry should be able to grow up at home with his family. It’s whether the nursing, therapies, equipment, and other support he needs to make that possible will actually be there.
I’m an attorney and Landry’s parent, and he has disabilities. We advocate for disability rights, and I’d be happy to explain any and everything I can, or connect you with people on a national level who have dedicated their lives to disability rights and justice.
