Statewide listening sessions launch the beginning of the plan to eliminate Nebraska’s disability services waiting list

April 19, 2024, 1 p.m. ·

Developmental Disabilities
According to Gov. Jim Pillen and Disability Rights Nebraska, this is the first time the state has made a concerted effort to eliminate the developmental disabilities wait list. (Photo by smartboy10/DigitalVision Vectors via Getty Images))

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Gov. Jim Pillen, along with the state director of the Division of Developmental Disabilities, has announced the intention to end the state’s disabilities waiting list, or the Developmental Disabilities Registry. The plan starts by listening to communities’ needs.

The Division of Developmental Disabilities (DDD), within the Nebraska Department of Health and Human Services (DHHS) will start a “Let’s Talk” listening tour throughout the state with the goal of eliminating the Developmental Disabilities waiting/registry list. The five-stop tour will start in Gering on Monday, April 22 and end in Norfolk Thursday, May 9.

DDD Director Tony Green said he plans to listen to community members to hear their concerns and questions about the new initiative.

“I hope they leave with the sense of hope and renewed spirit that we're actually going to tackle it, and that we have received the support all the way from the governor to myself as the director, and that we are going to get this done over the next 12-18 months,” he said.

Green outlined these supports may come in the form of community-based resources, paid formal supports like Medicaid and home and community-based waivers. This aspect will be included in his presentation for the sessions.

“I want to kind of lay out what will be happening over the next several months. And then I really want to, at the end, listen to their feedback about that plan, and begin to hear some of the conversations for items that we need to address in the future because this will be an ongoing process beyond just the 12 to 18 months,” Green said.

There are currently about 2,700 people on the waiting list.

Brad Meurrens, the public policy director for Disability Rights Nebraska, said his organization has been fighting for a waiting list elimination for decades. He said as far as he knows, this is the first time there has been a specific commitment from the state to take action in eliminating the registry list.

“People with disabilities are the experts on living with disability,” he said. “And so that's going to be a really important component of making sure that all the moving parts and all the waivers and all the other things that they might bring in, or reforms that they want to do, really kind of conform to what the needs are, and what reality is.

Some disability advocacy groups have expressed concern over the nuances of how this goal will be achieved within the 12–18-month estimated timeline. They have a series of questions they feel the announcement did not cover. In an email to state senators, Edison McDonald, the executive director of nonprofit disability advocacy group Arc of Nebraska, listed a series of questions that were not initially addressed in the plan’s announcement.

Those concerns include how the plan will be funded and if children will be kicked off the Comprehensive Developmental Disability Waiver. Green emphasized that under this new plan to eliminate the waiting list, nobody will be removed from their existing waiver program.

“Folks in this community, you know, these small little changes have big changes for them. And so, and it can be a life issue or like, it's a significant issue for them or their family. So, people are naturally real cautious, and really want to know more details,” Disability Rights Nebraska’s Meurrens said about some of the hesitant reactions.

As far as funding goes, Green said although the estimated $18 million is much lower than previous projections, it’s due to a more comprehensive understanding of the costs. Initially, the estimates accounted for each person on the waiting list needing around $90,000. However, Green clarified that not every individual on the waiting list needs services amounting to that cost. The $18 million estimate came from categorizing individuals based on need.

According to DHHS, the state’s plan will include Medicaid for DD-eligible children that meet the required level of care, additional access to family support and day services waivers that allow families to live together, case management services for people who do not require waiver services, comprehensive DD waivers based on a DHHS needs assessment and employment services.

Let’s Talk Listening Tour

Monday, April 22: Gering

Tuesday, April 23: Kearney

Wednesday, April 24: Omaha

Wednesday, May 8: Lincoln

Thursday, May 9: Norfolk

There will be one virtual session on Monday, May 13. All of the sessions will be held 6-8 p.m. CST.