Events

Join us for advocacy, education, and community gatherings

✅ January 14, 2026 - EVENT COMPLETED

Medicaid Waiver Advocacy Press Conference

Date: Wednesday, January 14, 2026
Time: 12:30 PM - 1:30 PM
Location: Nebraska State Capitol Rotunda, Lincoln, NE

Thank you to everyone who joined us at the State Capitol!

Nebraska RARE and disability advocacy partners gathered at the Capitol Rotunda to address proposed Medicaid waiver changes impacting vulnerable adults with disabilities and rare diseases across Nebraska. Families shared powerful personal stories and distributed action sheets to senators, bringing critical attention to how these changes affect our community.

📺 Media Coverage

KETV NewsWatch 7 covered our press conference!

Watch the full story to learn how proposed Medicaid waiver cuts are impacting elderly and disabled Nebraskans, and hear directly from the families fighting for their loved ones.

Watch Full Story on KETV →

Video and article courtesy of KETV NewsWatch 7

Continue the Advocacy:

  • Contact your district senator about these critical changes
  • Contact the Governor's office and request a meeting
  • Share the KETV coverage with your networks to raise awareness
  • Stay informed - more advocacy opportunities coming soon

Questions about the event or how to help? Contact Susan Samuelson at (402) 327-1100 or reach out via our contact page.

🎉 ADVOCACY VICTORY!

January 27, 2026 - Governor Pillen Reverses Course on AD Waiver Cuts

Following our press conference and extensive family advocacy, Governor Pillen has directed DHHS to make critical changes to the Aged and Disabled (AD) Waiver proposal!

Major Victories:

  • ✅ 40-hour weekly cap on personal care services ELIMINATED
  • ✅ 70-hour combined limit on LRI services REMOVED
  • ✅ Modified institutional cost limit with exception process

"I am truly appreciative of the Nebraskans who reached out to my office and participated in the public feedback process."
- Governor Jim Pillen

This is what advocacy looks like - families' voices were heard!

Read Full Announcement → View DHHS Information →
📝 February 2 - March 4, 2026

Second Public Comment Period - Revised AD Waiver

Your voice continues to matter! DHHS is opening a second public comment period on the revised AD Waiver proposal.

Comment Period: February 2 - March 4, 2026
Deadline: Comments must be postmarked or received by March 4, 2026
More Info: DHHS Public Comment Page

What Changed Thanks to Family Advocacy:

  • Removed 40-hour weekly cap on personal care for live-in caregivers
  • Removed 70-hour combined limit on Legally Responsible Individual (LRI) personal care and companion services
  • Revised institutional cost limit to 150% (down from initially proposed levels) with exception process for services necessary to protect participant's health and safety

How to Submit Comments:

  • Submit online through the DHHS website
  • Email your comments to DHHS
  • Mail written comments (must be postmarked by March 4, 2026)

Why Continued Advocacy Matters: Nearly 600 people participated in the first comment period, and families' voices led to major victories. The revised proposal still includes changes that need family input. Your continued participation ensures Nebraska families receive the support they need.

Questions? Contact our team via our contact page or reach out to DHHS directly through their public comment page.

Stay Connected: More events will be announced soon.