CW: Cancer
Parents like Susan and Mike Browne have always thought about their sons’ future. They constantly figured out how to keep their sons safe, and how to ensure the world wouldn’t forget their two sons, who are profoundly autistic and can’t advocate for themselves. When Susan, who is now in her seventies, found out she had cancer, this planning became much more urgent. The question of what would happen to her sons when she was no longer alive needed an urgent answer.
She and Mike’s sons, David and John Michael, are in their forties now. They have profound autism and need help with basic daily tasks. They require constant supervision. Their lives are filled with simple pleasures, like swinging at the park, rolling a favorite ball in the living room, or exploring their home. But each of these activities requires someone to be with them, someone who understands their needs.
Many disabled people face similar problems, including me. I have cerebral palsy and have lived in my own apartment for six years. Being independent isn’t just a concept for me; it’s the core of how I live. I get to decide what I eat, when I rest, and how I spend my evenings. These might seem like small choices to most people, but for me, they’re the difference between truly living and just being taken care of. If I lived in a nursing home, I wouldn’t have a say in my meals or my routines.
This spring, MassHealth suddenly cut my overnight personal care assistant hours. Having someone available at night isn’t a luxury; it’s essential for my safety. Appealing their decision was exhausting, and no one should have to spend months fighting for the care they require. Reading about the Brownes, I recognize the same feeling of instability, the same exhaustion, and the same awareness that a single administrative change can upend a life that’s been carefully planned for years.
For the Brownes, that change happened when Nebraska implemented a new assessment tool called interRAI. Suddenly, this tool decided their sons no longer needed 24/7 care, even though in reality, they can’t be safely left alone. Their annual Medicaid funding was cut by over $200,000 combined. The foundation for their future was unexpectedly shaken.
Almost 900 disabled Nebraskans have faced similar cuts. Families report assessments filled with mistakes and conclusions that don’t match their loved ones’ needs. The appeals process feels impersonal, unrealistic, and unclear.
What’s happening in Nebraska is part of a bigger trend. As states face tighter Medicaid budgets, algorithms are being used as an easy way to reduce services without admitting that cuts are being made. Families like the Brownes, and disabled people like myself, have built our lives around living in our communities. We did what the system asked. Now, an algorithm is threatening to unravel all that work, one number at a time.
Source:
Hixenbaugh, Mike. “A Secretive Computer Algorithm Is Taking Caregiving Money Away from Disabled People.” NBC News, 8 Sept. 2026, https://www.nbcnews.com/news/us-news/nebraska-medicaid-disabled-people-interrai-computer-algorithm-rcna594582.