LINCOLN, Neb. — The Nebraska Department of Health and Human Services will no longer seek to cap weekly paid hours for live-in family caregivers as part of a Medicaid waiver that helps aging Nebraskans and those with a disability remain at home.

DHHS announced in a news release Tuesday that it was changing course at the direction of Nebraska Gov. Jim Pillen after a “thorough review” and an “extensive” public input process. 

Hundreds of Nebraskans had submitted comments on the state’s proposal to cap the Aged and Disabled Waiver, which some families and waiver recipients worried could cost some their quality of life and, for others, more.

The waiver allows older adults and individuals with disabilities to receive long-term care at home or in their communities rather than in institutional settings. The waiver would need to be submitted to the federal government for review. The state’s current five-year waiver is set to expire July 31.

“I am truly appreciative of the Nebraskans who reached out to my office and participated in the public feedback process,” Pillen said Tuesday. “Based on my conversations with dedicated family members and AD Waiver recipients, I directed DHHS to take a second look at the proposal and make necessary changes to ensure Nebraska families continue receiving the support they need.”

Public pushback

DHHS had previously proposed capping live-in caregivers at 40 weekly hours and allowing up to an additional 30 hours each week if it came from someone outside the home, such as a private provider. 

The previous weekly limit for most waiver recipients was 112 hours, which will now be maintained.

Pillen’s 2026 budget proposal had included the proposed caps and estimated a budget savings of $14.12 million in state dollars next year, plus $17.18 million in federal funds.

Tony Green, director of the DHHS Division of Developmental Disabilities, previously said the goal of the changes was “stabilizing” the program and ensuring sustainability.

By mid-2025, the waiver had reached annual costs of $383.6 million, compared to $91 million in mid-2016, according to DHHS. That’s an average annual increase of about $29.3 million. 

“The revised proposal balances fiscal responsibility with the continued delivery of critical services, ensuring participants can remain safe, independent and supported in their communities while addressing unsustainable cost trends,” the Tuesday news release states.

Absent changes, Green had said previously that DHHS might need to implement a waiting list, limiting how quickly some families could access the waiver.

“The option of looking at that data and seeing those costs continue to rise at such a drastic rate, the option of doing nothing wasn’t on the table,” Green said in a previous interview.

Families and advocates had cautioned that in-home family caregivers often work for minimum wage, less than private caregivers, and are committed to the care of their loved ones. They urged DHHS to allow families to share the costs of providing compassionate, lower-cost care.

A proposed cap on the total annual costs that Medicaid would reimburse under the waiver would remain. It would be calculated on a DHHS estimate of yearly nursing home costs statewide — $92,438. An administrative review would be required if costs reach 150% ($138,657), and families could be reimbursed up to 175% ($161,767) if they pass a clinical review process with DHHS.

Opponents of the proposal had noted nursing home costs might be $1,000 a day, and for the level of care some AD Waiver recipients need, some argued the costs might well exceed $162,000 annually.

‘Huge, huge deal’

State Sen. Ben Hansen of Blair, a Republican in the officially nonpartisan Legislature, and one of its highest-ranking members, had vowed to fight the proposal. State Sen. Machaela Cavanaugh of Omaha, a Democrat, proposed a bill to legally block the changes.

“These are the people that I want to prioritize above all else first,” Hansen previously said. “To see us deprioritize them really concerns me.”

Hansen said Tuesday he was “very pleased” with the DHHS and Pillen pivot and said there might be other ways to find cost savings.

Susan Samuelson, “Nana” to her grandson Hunter, who has Duchenne muscular dystrophy, which causes muscles to get weaker over time, helped organize a rally at the Nebraska Capitol earlier this month to urge DHHS to change course and ask lawmakers to get involved. 

Samuelson, reached Tuesday, said she was thankful that DHHS and Pillen had paid attention to the state’s most vulnerable neighbors who, she said, deserve to have their families care for them.

“This is a huge, huge deal,” Samuelson said Tuesday. “I’m thankful for the work we did to get this done, sad that we had to go through that much. … In the long run, if they do it, that’s amazing.”

Samuelson added: “Now we need to work on our governor’s use of appropriate language,” referring to derogatory comments of left-leaning critics built on a slur for people with disabilities that he made last week. He has not publicly addressed the phrase.

The revisions will now head to a second public comment period, between Feb. 2 and March 4. Information on submitting comments will be available at https://dhhs.ne.gov/Pages/DD-Public-Comment.aspx.

“DHHS is grateful for the time and thoughtful feedback Nebraskans have shared throughout this process,” Green said. “We believe these revisions will allow us to continue providing high-quality care while responsibly managing costs.”

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