LINCOLN — Some came in wheelchairs, with caretakers. Others, with intellectual disabilities, were escorted by parents. Among them were four state lawmakers and a host of advocates for a population they described as Nebraska’s “most vulnerable.”
One young woman held a sign: “My sister cannot explain what she needs. That is why I am standing here.”
The few hundred people who converged Wednesday in the State Capitol were there to highlight concerns with the state’s implementation of a new system launched in July 2025 to assess Nebraskans with intellectual and developmental disabilities seeking Medicaid assistance.
Essentially, the interRAI tool determines the level of publicly assisted care, services and funding for Nebraskans with developmental disabilities. Several people who gathered for the media event offered personal accounts of why they believe the new assessment didn’t reflect their loved ones’ capabilities and put them at risk.
They called on Gov. Jim Pillen to pause any reduction in funding as a result of the new tool until an outside evaluation is done. An ongoing petition campaign, which has nearly 4,000 supporters, seeks to “pause, rollback, and fix or replace” the current process.
One dad, Lehn Straub, told the audience that his son Doug, 45, uses a feeding tube and tracheostomy, can’t move on his own and is unable to speak. He said an interRAI assessment last fall changed Doug’s service and funding tier from “advanced” to “intermediate,” meaning his one-on-one care at a day program dropped to a small group situation.
An example of how that plays out, the dad said, is that instead of a caretaker helping his son interact in a shopping mall or bowling alley, Doug can only watch others. He said he gets skirted from participation in events.
“Doug has not changed,” Straub said. “The only thing that changed was his assessment tool. He still requires one-on-one care every day and every night to keep him safe.”
A mom, Jennifer Henning of Omaha, came to Lincoln with her two children. She described son Connor as nonverbal, with cerebral palsy and profound intellectual disabilities. An interRAI assessment dropped his level associated with resources. Meanwhile, she said, her 11-year-old daughter’s needs aren’t as intense, yet she was deemed eligible for more support.
“How is this happening?” she asked, adding that the concern is about “putting money where it’s needed.”
Independent third party
The news conference organized by Disability Alliance of Nebraska came one day after the Nebraska Department of Health and Human Services released its own news statement that the state has hired an independent third party to evaluate interRAI implementation and effectiveness.
Wednesday’s gathering of families and advocates had already been scheduled when DHHS announced its $420,000 contract with Alvarez & Marsal Public Sector. DHHS said it will partner with A&M over the next four months during which the team will analyze performance and reliability and identify potential ways to improve.
DHHS said the A&M contract was exempt from a separate bidding process, as it was awarded through OMNIA, a multistate cooperative purchasing organization that already conducted a competitive bid on behalf of government agencies.
Some advocates of the disability community earlier raised concerns that a former DHHS manager who was instrumental in Nebraska’s pivot to the interRAI tool is now employed by A&M.
DHHS spokesman Jeff Powell provided a statement from A&M managing director Christoper Baglio, who said the former state employee, Kristen Smith, will not be involved in the project.
State records show the A&M contract starting in July, though DHHS said last week the contract had not been finalized. The document was not available Wednesday on the government website.
State officials, in defense of interRAI, said the tool is not new and is used in more than 25 other states. “Its value is that it replaces subjective, fragmented assessments with a standardized process that uses validated information to help guide decisions about care and services,” DHHS said.
The agency said its previous assessment tool, Inventory for Client and Agency Planning, or ICAP, was no longer being updated.
Since the interRAI launched for developmental disability waivers, DHHS said it has “significantly expanded” access to home and community-based services. The agency said about 80% of Nebraskans’ funding levels have stayed the same or increased.
Lawmakers join rally
Nebraska lawmakers attending the Disability Alliance’s Wednesday news conference included state Sen. John Fredrickson of Omaha, vice chair of the Legislature’s Health and Human Services Committee, which has oversight of DHHS. Also attending were state Sens. Victor Rountree of Bellevue, George Dungan of Lincoln and Merv Riepe of Ralston.
Fredrickson echoed comments from alliance leaders who welcomed the A&M independent evaluation as an encouraging step, but noted criticism of the process so far.
“Hundreds of Nebraskans are being denied life-altering care, not because of any change in condition or level of need, but because of a change in algorithm,” Fredrickson said.
He said that “obscure classifications and assessment processes” erode trust in the health care system and that state officials should listen to Nebraska families.“If they say a tool is not working, that tool is not working.”
Fredrickson directed a message at Pillen’s team: “Chipping away at resources for the most vulnerable in our state is in no way a badge of honor. It’s shameful.”
In response to the call for a pause, Powell said that would disrupt service to new applicants and those in need of an annual renewal. He said an assessment process or tool must be in place and verified by the Centers for Medicare & Medicaid Services to offer a waiver that leads to funding and services.
Tony Green, DHHS Division of Disability and Aging director, called interRAI a nationally accredited tool to determine services based on a cost-to-serve model. It was the DHHS choice after the agency in 2024 started seeking a “more modern, standardized, person-centered and comprehensive tool.”
An independent evaluation like that to be provided by A&M was always intended, Green said.
Another parent who spoke in the Capitol Rotunda, just outside the chamber where state laws are made, was Heather Vanourney of Lincoln. Her 21-year-old son Trenton was diagnosed with severe autism and developmental delay before age 2.
She said she did not bring Trenton along because he runs away, is afraid of stairwells and would likely screech throughout the conference.
“He will forever be a toddler in an adult’s body,” Vanourney said.
Yet, she said, after an interRAI assessment reduced his funding level, she cannot send him to day services.
“The state has essentially taken away that option,” she said. “He’s now forced to just stay at home.”
Appeal failed
Straub said he filed an appeal after he learned of his son’s assessment. He said he got the feeling early that it would not succeed and was correct.
“It wasn’t going to make any difference,” Straub said. “It was locked in.”
Mike Browne is a parent of two sons in their 40s who have profound intellectual disabilities. He also is a member of the Disability Alliance and Pillen’s advisory committee on developmental disabilities.
Browne said he welcomed the independent review but opposed continuing the current system in the meanwhile.
“If DHHS believes the Nebraska model requires a $420,000 independent examination of its reliability, validity and implementation, then it should not continue reducing people’s funding based upon that same model while the examination is underway.”
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