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3,000 vulnerable Nebraskans wait years for services, advocates say the list is growing

Andrew Ozaki March 9, 2021

Thousands of the most vulnerable Nebraskans need critical care but are having to wait years to get it.

For Christopher Hamilton, it's been nearly two decades.

His mother, Sue Hamilton said he was born with cerebral palsy.

"Christopher basically did not start meeting all those developmental milestones," Hamilton said.

As he grew older, it got worse.

"Our son has a feeding tube, he has a seizure disorder," Hamilton said.

She said Christopher had plenty of support when he was in school.

"We had a physical therapist and occupational therapist and a speech pathologist all coming out to our home," Hamilton said.

But she said that ended when he turned 21.

He could get Medicaid help through Nebraska's Developmental Disabilities Waiver program. They signed him up well before his 21st birthday and he did qualify.

"Only to be told, 'well, he is eligible but we don't have funding to support.' So your son will go on a waiting list," Hamilton said.

Christopher is now 36 and he's still on that list.

So are nearly 3,000 other Nebraskans.

"So it's increased by 600 people in the last year and a half," said Edison McDonald, the executive director of ARC Nebraska.

McDonald said it forcing some families to look at giving up their kids as wards of the state or leaving Nebraska to get services for family members.

"While other states have been expanding their Medicaid waiver options, Nebraska has been shrinking ours for decades," McDonald said.

"You push people past the breaking point by making them wait for services," McDonald said.

State Sen. Machaela Cavanaugh of Omaha hopes to do something about it.

"Having people be on a waiting list for almost two decades is is really unacceptable," Cavanaugh said.

She introduced LB 493.

It would inject $34 million over the next two years which would cut the list by about a third.

She also sponsored LB 376.

It would establish a pilot project to help more than 1,000 families with children on the waitlist. It would give them services while they wait.

"The budget is a moral document. And we as a legislative body have to decide what is the moral imperative," Cavanaugh told the legislature's budget-writing committee during a recent hearing.

The Nebraska Department of Health and Human Services officials said the average wait time is about eight years.

Forty-six percent of the people on the list, including Christopher, are receiving some form of assistance.

Gov. Pete Ricketts also wants to do more. His budget includes $27.6 million to expand services. DHHS said $11.2 million of that would go to the waitlist.

Advocates say providing timely, preventative services will actually save tax dollars.

And Jenny Koley's a great example. The woman with Downs syndrome uses the waiver money for a job coach and support so she can live in her own apartment.

"I take pride in going to work. And being a productive citizen," Koley said.

She told lawmakers her independence is tied to the services she receives.

"I am asking you to please vote to move LB 493 to general file. To do this will help me on my road to independence and help others who are still on a waiting list to achieve great things that have happened to me," Koley said.

And that's all that Hamilton wants for her son.

"We really feel like we just want to give Christopher his best life, whatever that might be," Hamilton said.

"If you are eligible, you should get services," Hamilton said.

According to the legislature's fiscal office, it would cost $125 million to totally eliminate the developmentally disabled waitlist.

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