.jpg)
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, 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 the accommodations weren’t needed — Lehn could pick up Doug and bring him where he needed to go. But now Doug is 45, and Lehn is 75. 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 visited 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. 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 this week was different. This week, Doug just sat in his chair on the sidelines, watching.
For the past 20 years, Doug was classified at the “high” tier of need and received a waiver that covered one-on-one care at his day program.
But late last year Doug became 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assessment tool called interRAI, rolled out by Nebraska’s Department of Health and Human Services in 2025 to replace outdated assessments.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.
But families say they found inaccuracies in the assessments, 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.
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.
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 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 Inter-RAI 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.
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.
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.
But Susan said she found that more than half of the answers did not reflect reality. Her sons 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. Appeal denied 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. 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 getting changes to the interRAI assessment wouldn’t make a difference.
“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 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 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.
DHHS noted it uses established Medicaid procedures, including telephone hearings to reduce barriers to participation, when processing appeals.
Nebraska lawmakers passed a bill 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.
DHHS said it now requires an internal supervisory review of each interRAI assessment for developmental disabilities before it is completed.
For Straub, it’s hard not to think about the future. 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.
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 thinks about Doug’s future.
“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?”
— The Flatwater Free Press is Nebraska’s first independent, nonprofit newsroom focused on investigations and feature stories that matter.
