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BRICK, N.J. — Cody and Kaleigh Brendle grew up near the Jersey Shore, going out on their grandfather's boat on weekends, learning to swim and riding bikes together.
"I was the annoying little sister — like, 'Wait for me, wait for me!'" said Kaleigh. She remembered standing by in awe at summer camp as her fearless older brother scaled rock-climbing walls and went down waterslides. "I was like, 'Wow, he's doing all this — maybe I can try.'"
The siblings said they've always relied on each other for support navigating life as two blind kids, now adults. Cody, 27, lives at home with his parents, and Kaleigh, 23, is starting law school across the country.
Both say there were, without question, many challenges growing up with disabilities. But the two of them are also part of the "ADA generation" — people who came of age under the safeguards of the Americans with Disabilities Act of 1990.
And in 1999, the year Cody was born, the Supreme Court handed down the Olmstead decision. It reinforced the ADA's integration mandate, which says people with disabilities should get to learn, live and work in their communities rather than in institutions. The government made that promise after people with disabilities fought against segregation in institutions, which have a long history of abuse and neglect.
"That affects everything," said Kaleigh. "The integrated setting affects school. It affects where you can work. It affects community-based programs like what my brother uses."
Now, the integration mandate — and an entire system of community-based disability services that more than 8 million Americans rely on — are being challenged.
"The integration mandate is why I'm here"
Kaleigh says the right to integration has shaped her life and her brother's life in countless ways. "The integration mandate is why I'm here at all and why I get to go to law school." When the time comes for her to become a parent, she said, it will "make sure that my kid's not taken because I'm disabled."
In practice, the integration mandate requires that states provide people with disabilities the services they need to thrive in their homes or communities — in other words, in the most integrated setting possible. For someone with intellectual or developmental disabilities, that could mean a personal care worker helping them to get dressed or eat, or a case manager helping them find a job or housing, among other services.
Now, a lawsuit brought by several Republican-led states, Texas v. Kennedy, is working its way through the courts. The plaintiffs argue that the federal government cannot require states to provide disability services in the community rather than in institutions. Then, in June, the Department of Justice (DOJ), which enforces the integration mandate, issued a legal opinion taking a similar position — essentially aligning itself with the plaintiffs in the case. "Congress has not imposed an integration mandate on states," the memo reads. It goes on to say the Olmstead decision "held only that a state cannot institutionalize such patients without justification. … What counts as adequate justification remains an open question." In July, the DOJ also clarified that it would no longer enforce Olmstead in the same way it had in the past.
The law itself hasn't changed, but these actions worry Kaleigh and other disability rights activists like her. "Because laws are great, but laws have to have systems in place that make sure they're enforced," she said. "Now the DOJ has essentially said, 'We're not gonna do that anymore.' And that matters quite a bit."
The Justice Department did not respond to multiple requests from NPR asking that it explain why it is changing course after decades of legal and bipartisan support for community-based services.
"I can't really overstate how significant this change in position is," said Alison Barkoff, a health law and policy professor at George Washington University who worked on Olmstead enforcement in the Justice Department during the Obama administration. "It is now the position of the United States government that people with disabilities don't have a right to be part of their communities."
The June DOJ memo acknowledges that the agency's legal opinion is a departure: "We recognize that this view of Olmstead's import is out of step with the common understanding of that decision within the federal courts."
Barkoff noted that it took disabled Americans decades of activism and advocacy to win the civil rights protections that the Trump administration is now challenging. "Olmstead is really about this huge cultural and societal change that has happened over the years," she said. "We now have people with all types of disabilities who are living in our communities, who grow up with their families, who are side by side in classrooms with students without disabilities, who are in our workplaces."
Being a part of the community rather than living in an institution means having the ability to make choices — from when you want to eat or go outside, to where you work.
Just 45 years ago, Barkoff said, about 99% of disability services paid for by Medicaid were provided in an institutional setting — restrictive environments similar to hospitals. While some institutions still exist, now more than 80% of people with disabilities receive services in the community instead.
More than 8 million adults rely on home- and community-based support through Medicaid.
Cody, who is blind and has autism, is one of those people.
"A night-and-day change"
Cody left high school at 21, and in that transition, he lost the structure and protection of a school setting, along with a fulfilling social life. While Kaleigh always knew she wanted to go to college, Cody likes working with his hands. He had job-training stints as a runner at a courthouse and cleaning tables at a café, but Cody struggled to get a paying job. So he was in limbo, according to his family. "He was just lost," said Heather Brendle, Cody's mom, with tears in her eyes. "He wasn't the vibrant Cody that he used to be."
Then, Heather said, she learned about programs that Cody was eligible for and that are funded by Medicaid. After months of compiling paperwork and going through the application process, he was accepted into a community-based program nearby called Next Steps.
"It's a night-and-day change," said Kaleigh. "He lights up when he talks about Next Steps." Heather nodded in agreement. "He's just so much happier. … He's more excited about himself — that he's meeting friends, like he's not stuck here at home."
At Next Steps, Cody starts his day with a community meeting with more than two dozen other adults who have disabilities. Everyone shares what they've been up to outside the program, practicing their public speaking and social skills. With the help of support staff, Cody also practices other life skills: making grocery lists, shopping for food and managing his money. While grocery shopping is one of his least favorite activities, he acknowledges that "it's an important skill. Everyone has to buy food, or else you'd be hungry."
The program also includes activities that Cody actually enjoys: exercising at a local gym, dance classes, boat rides along the Jersey Shore and job training at Jersey Mike's Subs, which is a highlight of his week. "Bopping lettuce is my favorite job at Jersey Mike's," he said. Using his cane, he navigated to the back kitchen, where he demonstrated the task: "You have to take the whole head of lettuce and bang it down a couple times to loosen the core." After doing so, he deftly extracted the core and peeled away spoiled leaves, preparing the lettuce for the front of house, where sandwiches are made.
One goal of community-based programs like these is to help disabled adults become more independent. Cody said this work experience will help him prepare for a dream job at either Papa John's (his favorite pizza place) or an appliance store. "I love laundry machines. I like the vibration. … I can tell from the sounds my mom's machine is making what's wrong with it, like if it's off-balance."
On top of the legal threats to community-based care, Congress cut roughly $1 trillion from Medicaid in last year's One Big Beautiful Bill Act. States were already trimming community-based services, and now advocates worry that Medicaid cuts could add pressure to pare back such services even more.
Jennifer Mathis, a disability rights lawyer at the Bazelon Center for Mental Health Law, called cuts to community-based programs shortsighted and a "great irony" because it costs states and the federal government far less than institutional care. "If you cut community services in this era where budgets are tighter than they have ever been, that will mean expanding institutional care. It would be crazy to expand institutional care in this fiscal environment, because states are going to be able to serve only a fraction of the number of people that they can serve in the community at the same cost. … So why?"
Planning for an uncertain future
Cody's family said planning for the future is incredibly difficult in the current landscape. Cody is also on a yearslong waiting list for a Medicaid waiver that could give him access to housing one day if his parents are no longer able to support him. Thanks to his community-based program and family help, Cody isn't at risk of institutionalization now. But his family worries about what could happen if threats to the integration of disabled Americans continue, especially in the long run.
"What's five years from now? What's 10 years from now?" said Cody and Kaleigh's dad, Jim Brendle. "What's here when we're not here?" He said these questions remind him of how important it is for his children to get the services they need now to build independence for whatever the future holds.
And Kaleigh isn't just thinking about her and Cody's future — she is thinking about what life will be like for her own children one day. "I also want to be a mom and raise children in a world that has these protections in place," she said. "I don't want them to grow up in a future where they have less rights than I do."
The threats to the integration mandate are what led Kaleigh to start a disability rights organization called Judy's League, named for the activist Judy Heumann. She has been traveling the country to meet with lawmakers to raise awareness about threats to the integration mandate. She's also spreading the word on social media about her community's fight.
While Kaleigh is afraid that the dark past for disabled Americans could become the future, she is more resolute than ever about her career path as a disability rights lawyer. She's in her first weeks as a law student at the University of California, Berkeley.
"It feels like what I'm about to do is more needed than it has been in a long time."
Edited by Nirvi Shah and Steve Drummond
Produced by Janet Woojeong Lee
Visual design and development by Nicole Werbeck
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