Families advocate for disability care amid concerns over new assessment

Lincoln, Neb. (KLKN) — Families from across Nebraska gathered at the State Capitol on Wednesday, calling for changes to the state’s new interRAI assessment system and raising concerns about how it could affect the care their loved ones receive.

For the parents who spoke out, the concern isn’t just about numbers or funding tiers. It’s about the care their children rely on every day.

For Lincoln dad Lehn Straub, that’s his 45-year-old son, Doug.

Straub said Doug has needed one-on-one care for decades, but after the new interRAI assessment, his level dropped from high to intermediate.

“Clearly, Doug has not changed. The only thing that has changed was the assessment tool,” Straub said.

Straub said that change could mean Doug going from one-on-one care to one caregiver for four or five people.

For Vicki Stopak, caring for her 38-year-old son, Chad, is an around-the-clock responsibility.

“My life revolves around this boy, and it’s very hard. He needs a caregiver 24/7, and it’s hard to find people to watch him, so I miss a lot of things. I’m at home all the time,” Stopak said.

She said that’s why she came to the Capitol to advocate for her son.

“I came here to fight for my child, Chad Stopak. He’s 38,” Stopak said. “We were told that if he is 24-hour care, then he should be put in the institution, and I said, no way, he’ll die there. We love him so much, and it’s time to start fighting for all the disabled children.”

The state is now launching an independent review of the interRAI system. The review is expected to take about four months.

It’s a step advocates say they have been calling for, but they don’t want families to face further funding reductions while they wait for the results.

Families at the Capitol said they plan to keep advocating until they feel their children’s needs are being accurately reflected.