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Nebraska parents of disabled children rally at Rotunda

Updated: May. 27, 2021 at 6:49 PM CDT
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OMAHA, Neb. (WOWT) - The senators are gone. On the last day of the legislative session, one group of Nebraskans stood over in the Rotunda as a reminder of one issue that didn’t get done. In many cases, they are the children who don’t feel the grass on their feet the same as other people, or get looks from other kids because they just don’t understand. Too many times, they feel, their voices aren’t heard. That’s what it felt again last week in the Unicameral Legislature.

For years, Nebraska families with intellectually or developmentally disabled children have been asking state legislators to help them fill a gap in coverage like other states, because the waiting line for financial assistance is too long.

Shonda Knop, with Child on the Waiting List, attended the rally. “When parents think of what they want for their kids, they don’t think feeding tubes, catheters, epilepsy medications or trials for quality of life. we want our families to stay together. but with the filibuster and just 3 votes — you are asking families to divorce or give up a kid to the state or move.”

The idea is $10,000 for a family in need now — would keep the costly next steps from developing. No one wants to move, but it’s been a stalled debate in Nebraska for years.

Jamie Bertucci, of Down Syndrome Association of Families, said, “If he would have been given the care he needed consistently early on he would have a higher IQ -— and more independent skills. I would have some reassurance that I could die one day and my son would have a job.”

Jacoby is in the Capitol with his family. He turns 14 on Friday. “Happy early birthday. I hope you like this,” Knopp said.

State Sen. Machaela Cavanaugh of Omaha, who has been pushing for change, believes next year will be different. “Before you turn 15 Jacoby, we’re going make this happen,” she said.

Technically, Thursday was not the last day of the session. Legislators saved a few days and will be back in September to draw redistricting lines since the U.S. Census Bureau numbers were late.

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