Developmental disability advocates seek fresh takes on policy

Developmental disability advocates want change, as governor candidates Lynne Walz and Rick Beard heard at a listening session on Thursday evening. Many say they have lost support from the state and hope whoever wins the governor’s race in November will restore it.

Last year, the Nebraska Department of Health and Human Services kickstarted a new financial support assessment program for families of those with disabilities, called interRAI. Under interRAI, which went into place last July, many families have lost funding, and none of the 230 appeals filed so far have been successful.

Many parent caretakers whose adult children want to live at home are among those whose funding decreased with the new system. One attendee, Cathy Martinez, said that the state is taking advantage of caregivers like her by cutting their funding.

“Caring for a child like mine as an adult requires 24/7 care,” Martinez said. “And I don’t have Kennedy money and I don’t have Pillen money.”

Others added that the state offers less support for families once a child with disabilities turns 19. This cutoff is set because the child is considered legally an adult, but parents argue that in many cases, the age is an arbitrary metric. They said the state also does not have enough places for people with disabilities to go or enough healthcare providers to help them. Some suggested families band together to sue Gov. Jim Pillen’s administration. Cori Watkins, a nurse based in Lincoln and parent caretaker, said it is time for families to take a stand.

“Nobody is going to win unless we file a class-action lawsuit against the current administration collectively,” Watkins said. “Which, I think a lot of us are prepared to do. I know I am.”

The Pillen campaign said that it has invested in the developmental disability community by meeting with families, cutting the waitlist for support and investing federal dollars in programming.

“We will continue to improve support for these Nebraskans — and I look forward to that ongoing work,” The Pillen campaign wrote.

Advocates added that there is no transparency from the state as to why they lost their funding. Nebraska lawmakers passed a bill (LB958) this year requiring the Department of Health and Human Services to submit a report to the legislature about how it assesses each case, how many participants’ funding decreased or stayed the same and why. This report must be submitted by Aug. 1 this year and next year.

Advocates wanted specific plans from the candidates as to how they would help their community if elected. Walz, a Democrat candidate, said that her administration would listen to families, healthcare providers and staff as to how best to fund and support people with disabilities. Rick Beard, a candidate with the Legal Marijuana Now party, said families should have better financial support from the state. Both candidates agreed that Nebraskans want to help each other and would want these families to feel supported.