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Families in Nebraska say state is taking away vital Medicaid funds from disabled people
The changes have left families worried that people with significant disabilities could lose critical support despite no meaningful change in their medical or daily-care needs. NBC News senior investigative reporter Mike Hixenbaugh recently reported on families who say the reductions could threaten their loved ones’ ability to remain safely in their homes and communities.
A New System Determines the Level of Care
Nebraska began using the interRAI assessment system to evaluate people receiving developmental disability Medicaid waiver services. The assessment is used to help determine a person’s level of need and, ultimately, the amount of publicly funded care they receive.
Families and advocates say the system has produced troubling results, including cases in which individuals were assigned lower levels of support even though their disabilities and care needs had not changed.
Mental health professionals and parents recently presented concerns about the system to Nebraska’s Developmental Disabilities Advisory Committee. They pointed to what they described as multiple flaws in the assessment process and questioned whether the tool accurately reflects the needs of people with intellectual and developmental disabilities.
Parents Say Their Loved Ones Are More Than a Score
For families who rely on Medicaid-funded services, a lower assessment can mean fewer hours of assistance, reduced funding or changes in the services available to their loved ones.
One Nebraska mother, Carol Salber, previously told KETV that her son Dalton, who has autism, had received state-supported services for roughly a decade. She said the funding allows him to live a more normal life with assistance from service providers.
Salber and other parents have questioned whether an automated assessment can adequately capture the complexities of caring for someone with a developmental disability.
Their concerns have also been raised during meetings with state officials, where families have sought more information about how the assessment determines funding levels.
Nebraska Lawmakers Are Now Requiring More Oversight
The controversy has prompted action from Nebraska lawmakers.
A 2026 law requires the state to report on its use of assessment tools for people receiving developmental disability waiver services. The reports must include information about the metrics used, algorithms and scoring systems, changes in service tiers and the reasons behind those changes.
The state must also examine potential disparities, implementation challenges and whether the system complies with federal Medicaid requirements involving grievances and appeals.
The law also requires an immediate supervisory review when an assessment results in a reduction in a participant’s service tier, authorized service hours or other services before the reduction is implemented.
Families Want the System Paused and Reviewed
Advocates argue that decisions affecting vulnerable people should not depend solely on an assessment model that families believe may not accurately capture their day-to-day needs.
The debate comes as Nebraska continues to manage the cost and structure of its Medicaid program while also facing growing scrutiny over how it determines eligibility and allocates limited resources.
Nebraska’s Department of Health and Human Services says developmental disability waiver eligibility involves multiple requirements, including having Nebraska Medicaid and meeting the state’s definition of a developmental disability.
For families, however, the issue goes beyond eligibility. They say the stakes are about whether their loved ones can continue receiving enough support to remain safe, independent and out of institutional care.
The Bigger Question: Can an Algorithm Measure Human Need?
The controversy in Nebraska highlights a broader challenge facing government agencies as automated systems become more involved in decisions about public benefits.
Algorithms can process large amounts of information quickly, but families argue that disability care cannot always be reduced to numbers, categories or predetermined scores.
As Nebraska officials face growing pressure to explain how the system works and why funding levels have changed, families are calling for greater transparency, accuracy and accountability.
For those affected, the question is simple: Can a system designed to measure need actually recognize the full reality of a person’s life and the support they require every day?
Source: NBC News
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