09/11/2026
The question haunted Susan Browne for decades: Who would care for her two disabled sons after she and her husband were dead?
Her fears took on new urgency last year when Susan, 72, was diagnosed with a rare and aggressive breast cancer.
Her sons David, 47, and John Michael, 45, have profound autism and need help with every daily task, from bathing and dressing to using the bathroom — care that has grown harder for Browne and her husband, Mike, to manage as they’ve aged.
She sometimes lay awake, her mind racing. Who would sit with them at meals to keep them from choking? Who would patiently roll their favorite ball around the living room or take them to the park? Would they end up locked in an institution?
The Brownes believed they had finally found a solution: Using Medicaid funding for people with disabilities, they created a nonprofit and assembled a trusted team to care for David and John Michael at home for the rest of their lives.
Now that plan is falling apart — thanks to a secretive computer algorithm.
The assessment tool, called interRAI, determined that David and John Michael, who without constant supervision might run into traffic or touch a hot stove, no longer needed one-on-one, around-the-clock care.
It slashed their combined Medicaid funding by more than $220,000 a year.
“This just blew me out of the water,” said Browne, who has been appealing the decision while traveling to Houston for cancer treatments. “I’m so terrified for my sons now. Terrified.”
It’s not just the Browne brothers.
Since Nebraska began using interRAI last year, the state has cut Medicaid funding to nearly 900 people with developmental disabilities, leaving many caretakers racing to overturn decisions made by an algorithm whose inner workings are largely hidden from the public.
State officials say the standardized system makes funding decisions fairer and more consistent. But families describe assessments riddled with preposterous errors, caregiving cuts so severe they fear for their loved ones’ safety and an appeals process that appears to rubber-stamp whatever the algorithm decides.
One mother said the assessment concluded that her 43-year-old son — who’s nonverbal and prone to putting anything in his mouth — could feed himself and arrange his own transportation.
Another said the system inexplicably determined that her nonverbal, tube-fed 9-year-old son needed less support than his much more independent older sister.
They are among scores of families now facing painful choices: place their loved ones in institutions where they could suffer abuse or neglect, or sacrifice jobs, savings and retirements to keep caring for them at home.
As more states look to manage shrinking Medicaid budgets, Nebraska offers a preview of the role algorithms could play, said Pamela Herd, a University of Michigan professor who studies the obstacles people face in accessing government programs.
Instead of enacting cuts outright, she said, states can quietly turn the dials on automated assessments to limit who qualifies for care and how much they receive. This transforms benefits decisions into a black box, making it hard to understand — much less challenge — the result.
After months of blowback from families and amid an ongoing legal battle over interRAI, the state announced in August that it planned to hire an outside consultant to determine the “reliability and validity” of the algorithm.
Source: NBC News
We are living in scary times. 😢
