Concerns over assessment tool deciding vulnerable Nebraskans level of care, families speak out

Mother shares how the tool could negatively impact her son's life, and KETV Investigates takes her concerns to the state.

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‘My son’s more than a data point’: Concerns over state assessment tool deciding vulnerable Nebraskans funding for care

, Neb. —

KETV Investigates concerns about how a new state tool assigns the type of care that people with developmental disabilities need.

KETV talked to a mother who believes the algorithm will be denying necessary care for her child.

“Nebraskans are independent, and we take care of each other,” Carol Salber said. “This seems to fly in the face of that.”

Salber is a mother of two. Her oldest child, Dalton, was diagnosed with autism spectrum disorder when he was two years old.

“He’s been receiving services through the state for about 10 years now,” Salber said.

Dalton has been on the developmental disability (DD) waiver.

She said the state funding from the Department of Health and Human Services allows him to lead a normal life with support from service providers.

“He’s pretty involved, and that’s what the services help him do is to stay engaged and give back to the community and be involved as he can,” she said.

However, she said a new DHHS assessment tool called inteRAI, implemented last July, changed his level of care.

“His funding is potentially set to be cut by approximately 35%,” she said.

DHHS uses inteRAI to evaluate DD waiver users’ needs through a variety of questions and documentation of the person’s medical history.

KETV Investigates asked DHHS for a sit-down interview, but the department declined.

In a response to written questions, a spokesperson said, “The interRAI follows a cost-to-serve model that places participants with similar scoring in groups based on cost analysis research conducted by interRAI, yet allows for a more person-focused assessment model.”

Study on how inteRAI results work: A Case-Mix System for Adults with Developmental Disabilities

Salber said, “It could be anywhere from literally one question to a max of 14 questions. That’s it. That will determine their level of care and funding.”

Salber said when she brought this up to health and human services officials, vague responses left her with lingering worries.

“To be told that the algorithm decided isn’t really comforting to me, and it’s not accurate,” she said.

When asked about the algorithm’s accuracy, a DHHS spokesperson said the department “continues to monitor the output of the interRAI assessments, ensuring participants receive an appropriate determination that is person-centered. As the population served via waivers grows, DHHS continues to evaluate the allocation of resources to meet the needs of all Nebraskans.”

Salber said proof of Dalton’s needs lies in his daily activities, which require the help of an independent provider and community service providers to help him every day.

“Without that high level of support and supervision, his safety is really at risk. His health is at risk as well,” she said, adding that she’s frustrated from a moral and ethical standpoint and, “I think from the state perspective, it’s really financially irresponsible.”

Salber’s family is not the only one. “This is a bigger issue than just Dalton,” she said.

He is one of 785 people who saw a decrease in their funding since last April, according to the latest inteRAI results report from the state.

Families can appeal their decision to the department’s internal hearing office. If the decision is not what the family is looking for, they can petition it to the district court. The final stop would be the Nebraska Supreme Court.

“Everyone that I’m appealing to is an employee of the state of Nebraska,” Salber said.

DHHS said 450 people appealed their decisions.

Two decisions were reversed
243 were affirmed
149 were dismissed.

The agency said the reversed decisions “reflect a procedural correction and are not a reflective of an issue with the interRAI assessment tool.” It explained the dismissed decisions, “result from DHHS working with participants, families, and providers to clarify or reconcile differences before an assessment decision is confirmed or a resolution is reached with families that results in a dismissed appeal.”

It said the number of appeals is out of a total of 7,461 initial and renewal assessments from July 2025 to June 2026.

Initial inteRAI assessments: 6,128
Renewed inteRAI assessments: 1,333

“The state agency said 80% of cases have either increased tiers or stayed at the same level. Only 17% have seen a decrease after thorough review,” a DHHS spokesperson said. “More people with intellectual and developmental disabilities are receiving resources and support than ever in Nebraska’s recent history.”

Salber said the assessment decision decreases her son’s care and would not benefit his well-being, which is why she’s appealing the decision.

“It costs money not just for us but for the state,” Salber said.

When asked how much money DHHS puts toward appeal cases, the agency says it “invests adequate resources to resolve appeal cases.”

Resources that Salber wants put toward more productive conversations.

“My son’s more than a data point,” she said. “We all know money’s tight. Let’s work this out. But we can’t get there if we can’t even come to the table to talk about it.”

People in the developmental disability community are holding a listening session Thursday, July 9, and have invited gubernatorial candidates to the table.

Lynn Walz will be there, and incumbent Gov. Jim Pillen declined due to a prior commitment.

The meeting starts at 5:30 p.m. at the Vessel Network.

You can register here and submit the questions you have for the candidates through that registration form.

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