Every weekday at 1:30 p.m., Lehn Straub stands in front of his Lincoln home and waits for his son, Doug, eager to hear about the day’s adventure.

“I’ve got it, Lehn, don’t worry,” says Doug’s aide as he pushes the heavy wheelchair up a steep driveway, over the threshold and into a home built lovingly around Doug, with extra-wide doors, an accessible bathroom and a lift to get Doug in and out of his chair.

There was a time when some of those accommodations weren’t needed — Lehn could pick up Doug in his arms and bring him wherever he needed to go. But now Doug is 45, and Lehn is 75, and daily living has become harder. 

Lehn asks what Doug got up to that day. On an unseasonably warm Thursday in March, Doug’s day program had taken a trip to a nearby lake to see migrating pelicans.

“Wow, Dougie, what’d you think of that?” Doug didn’t respond. He can’t speak. But on this day, like most, he was smiling.

Doug loves his day program, loves spending a few hours out of the house with his friends. Every Monday, they go bowling at a local bowling alley. His aide pushes Doug’s wheelchair up to the lane, puts a ball on the ramp, guides his arms to the ball and sends it down the lane. His face lights up every time.

But earlier that week when Lehn asked about bowling, he got a different answer. Doug just sat in his chair on the sidelines, watching.

For the past 20 years, since aging out of Lincoln Public Schools, Doug was classified at the “high” tier of need and received a waiver that covered one-on-one care at his day program.

Doug is one of nearly 600 Nebraskans with disabilities whose funding levels were cut under a new assessment tool called interRAI, rolled out by Nebraska’s Department of Health and Human Services in 2025 to replace outdated assessments.

The move came alongside a larger push to eliminate Nebraska’s decades-old backlog of waiver requests, which left thousands of families on the hook to cover services for loved ones with developmental and intellectual disabilities.

Since interRAI was implemented, 717 more people with disabilities have been able to access home and community-based services, DHHS said in a statement. It also has helped cut administrative costs and decreased repetitive assessments for those seeking services.

But families who have received the new assessments said that they found inaccuracies, leading to funding determinations that do not reflect their reality.

Doug moved from the high to intermediate tier, which means about 50% less funding to cover his day program. As a result, Doug no longer has an aide individually focused on him. Now, he’s one of three people assigned to one aide.

That change makes a big difference to Doug’s quality of life, Lehn said, and it could grow worse in the future. Doug has a trach that needs to be suctioned so he can breathe. He’s immobile and depends on caregivers to feed him through a tube in his abdomen and keep him clean and comfortable. When his father and stepmother die, he’ll likely need to move into a shared living program. His funding for that will be based on the tier in which he is placed. 

“What happens if we aren’t here?” Lehn said. “Because we’re able to supplement so much for him now … what happens then?”

Lehn appealed the state’s determination, along with 237 other families as of the end of January. DHHS is in charge of reviewing and ruling on those appeals. They have granted zero reversals.

“Nobody’s had any success with it at all,” Lehn said. “Using the interRAI seems like, instead of an assessment tool to determine a person’s level of care that they need, it’s more of a tool to help them cut their budget.”

InterRAI Issues

David Browne flung a spoon off of the counter with a clatter. As his mother bent down to pick it up, he beelined toward a plate, shoved a handful of hot grilled cheese into his mouth and started to choke.

His caregiver, Daun Beck, immediately turned to coach him through chewing, wiping at his chin to protect his tracheostomy. It’s a common scene in the Browne household; both David and his brother John Michael are in constant danger of choking.

David and John Michael, 47 and 45, are profoundly intellectually disabled, their mother Susan Browne said. A licensed psychologist recently evaluated them and found they need continuous one-on-one care, 24 hours per day, to stay safe and meet their basic needs.

They have been at the advanced level of need for more than 40 years, Susan said. But InterRAI assessments in October determined both sons at the intermediate level of need — two tiers below their previous assessment. David was later reassessed at one tier higher because of his tracheostomy.

It’s not unusual to see some people moved to different levels of need when a state changes assessment tools since each tool measures abilities differently, said Dr. Craig Escude, president of IntellectAbility, a company that supports people with disabilities.

Compared to the state’s previous assessment tool, interRAI uses a broader, more dynamic assessment of medical, behavioral and support needs, DHHS said. The state picked it because it has been shown to accurately capture a person’s behavioral and health-related functional needs.

More than half of the roughly 3,400 Nebraskans who were receiving waivers saw no change to their funding with the new assessment, and about a quarter moved to an increased funding tier, according to DHHS’s March interRAI report.

The Brownes were among the almost 600 who saw their funding cut. Susan was not able to attend her sons’ assessments because she was in Houston receiving breast cancer treatment. DHHS would not reschedule, she said. David and John Michael’s hired caregivers met with the assessor.

When she requested a copy of the interRAI assessment, Susan found that more than half of the answers did not reflect the reality of her sons’ needs. They were scored as independently able, with minimal supervision, to do daily tasks like eating and using the bathroom. In reality, both need constant help to do those basic tasks.

DHHS said it could not comment on specific cases. In general, assessors are trained to gather information from multiple sources, including interviews, observations and documentation, DHHS said. 

The interRAI assessment is intentionally person-centered, DHHS said, meaning that they gather information from the disabled individual whenever possible.

People with intellectual or developmental disabilities often communicate in different ways, though, Escude said, and it can be difficult for them to express their feelings or explain their health status.

“So what we see is that people may have more complex medical needs than is always evident on the surface … and it can be difficult to pick up on some of those health conditions that might require a higher level of support if they’re not asking the right questions,” Escude said.

To communicate with Doug, the Straub family mostly watches his facial expressions. Lehn spreads his arms to ask questions — look toward this hand to watch ESPN or this hand for Disney. Doug usually turns his eyes toward ESPN.

His interRAI assessor scored him well on a question that asked about any hallucinations or delusions he might experience. But that’s impossible, Lehn said, because Doug has no way to communicate what he is experiencing.

The assessment also asked about behavioral symptoms, like wandering, verbal abuse and outbursts of anger. Doug’s symptoms were marked “not present.” 

“Doug cannot perform any of those activities because he cannot speak, walk or control his movements,” Lehn said. “So the score of ‘not present’ totally disregards the level of disability for someone who cannot perform any activities for himself.”

Moving The Needle

As soon as Lehn Straub held the reclassification notice in his hands on Sept. 30, the clock started counting down. He had 10 days to file an appeal with DHHS in order to keep Doug’s previous level of funding during the process.

He requested a copy of Doug’s interRAI assessment and hired an attorney to help guide him through the process. He collected letters from Doug’s doctors testifying that he needed a high level of assistance with daily living and communication.

Their appeal spanned two two-hour-long sessions, Lehn said, but he quickly got the feeling that even getting changes to the interRAI assessment wouldn’t make a difference in Doug’s score.

“At one time (the attorney) had asked, ‘Well, are we moving the needle so that his level of care will go back to high?’ and they go ‘No,’” Lehn said.

Doug’s case-mix index, a number developed from the interRAI results, is 1.06, placing him firmly in the intermediate range of 0.76 to 1.23.

His scores for ability to complete activities of daily living and cognitive performance, though, are the highest, indicating severe impairment and total dependence on others.

Doug’s abilities have remained the same for decades, Lehn said, and this reclassification is the first funding-level change they have faced. 

The old process did not require the individual to be reassessed each year, DHHS said, meaning many people had not been interviewed for several years. All participants will now receive an interRAI assessment annually.

Doug’s appeal was denied.

As of the end of January, DHHS had closed 107 appeals, affirming their determination for 61. The other 46 were dismissed or withdrawn. DHHS has not reversed a single determination on appeal.

Withdrawn and dismissed appeals include cases in which the interRAI outputs were reviewed and adjusted prior to the hearing, as well as cases where participant or family questions were addressed and resolved, DHHS said.

Curt Safranek, whose son Will was also reclassified from high to intermediate level, compiled a list of 49 issues and errors he found in Will’s interRAI. DHHS did adjust the answers to several questions during his appeal, Safranek said.

Will’s case mix index was 1.23 after the initial interRAI assessment, only 0.01 away from the threshold for the high tier. Despite the revisions during the appeal, his score did not change. He remains in the intermediate tier.

Safranek asked the department to perform another interRAI with a different assessor and was denied, he said.

“The rationale in the final ruling on the appeal was basically like, ‘We followed our process. Therefore, you have no redress,’” Safranek said. “It’s the fox guarding the henhouse. You’ve got the department who administers it. You have to appeal to that department.”

DHHS said the office that handles appeals operates independently from the Division of Developmental Disabilities to ensure impartiality. The department uses established Medicaid procedures, including telephone hearings to reduce barriers to participation, when processing appeals. 

Nebraska lawmakers passed a bill, almost unanimously, on April 10 to set training requirements for employees performing assessments. It also requires immediate supervisory review of any assessment that lowers the person’s service tier — people like Doug, David, John Michael and Will.

The bill also requires DHHS to submit reports to the Legislature in August and again in 2027 about developmental disability waiver assessments.

DHHS said it now requires an internal supervisory review of each interRAI assessment for developmental disabilities before it is completed.

When We’re Gone

As she grappled with her breast cancer diagnosis, Susan Browne knew that she had to secure her sons’ futures. The state doesn’t have a place for them to go, she said.

David and John Michael have faced physical, emotional and sexual abuse from hired caregivers in the past, Susan said. David once leapt from a caregiver’s car in the middle of Lincoln’s Haymarket District and cowered in the street in fear. 

“I know I’m 71, I know life isn’t going to last forever for me,” Susan said. “But I honestly can’t die before my kids right now; the abuse could happen again.”

Before the new assessments, Susan spent a year creating a service organization from scratch, meeting a seemingly endless list of federal and state standards to build a plan for her sons to receive trauma-informed care for the rest of their lives.

The resulting nonprofit, I Belong, employs a rotating group of 15 caregivers, paid by waivers through DHHS, who care for David and John Michael 24/7. Susan had started to plan for expansion, to offer care to more people with severe and profound disabilities.

It’s a small life that David and John Michael live. They spend their days kicking balls around the house, listening to musical birthday cards and taking short outings with caregivers who are patient and kind. They are the happiest they have ever been, Susan said.

Susan felt she finally had figured everything out, that David and John Michael would be safe when she’s gone.

Now, it feels like it’s all crumbling away around her. At the lower funding tiers, the organization she built won’t be able to employ as many safe caregivers. She worries it eventually won’t be able to function at all. Her biggest fear — that David and John Michael end up institutionalized — feels more real than ever.

“I’ve kicked a ball around in that living room for 45 years,” Susan said. “I can’t do it anymore. I don’t have it in me anymore. I just want to make sure they’re safe, so I’m fighting this fight all the time.”

The fear has started to set in for Lehn Straub, too. At a recent ARC of Nebraska caregiver training, he was challenged to consider the reality of his death. He prepared a hefty three-ring binder with all of Doug’s medical, legal and financial documents.

They will keep Doug at home as long as possible, where they have all of his medical equipment and the baseball memorabilia he has collected over the years.

They take Doug to a Cubs game every year for his birthday, traveling to away games all over the country and collecting a pin at each new stadium. Doug’s room is filled with Cubs decorations and photos of their trips.

“There’s no need for him to go anyplace else because we provide here for him,” Lehn said.

But when Lehn and his wife Mary die, Doug will most likely need to move into a shared living community. Doug’s interRAI determination will decide how much care he receives there, too. Lehn’s voice grows softer and shakier as he worries about what Doug’s future will look like.

“What happens if we aren’t here?” Lehn said. “If they don’t have the funds or he’s at the intermediate level and not at the high level that he was before, is there going to be money available to provide for him?”

This story was originally published by Flatwater Free Press, an independent, nonprofit newsroom focused on investigations and feature stories in Nebraska that matter. Read the article at: https://flatwaterfreepress.org/benefits-slashed-appeals-denied-nebraska-disability-change-leaves-hundreds-desperate-for-more-help/