Funding sought to address developmental disability wait list

The Appropriations Committee heard testimony Feb. 24 on a bill intended to alleviate a wait list for developmental disability services in Nebraska.

LB493, introduced by Sen. Machaela Cavanaugh of Omaha, would appropriate $17 million in general funds per year in fiscal year 2021-22 and FY2022-23 to the state Department of Health and Human Services to fund individuals on the wait list for developmental disability services.

Cavanaugh said that almost 5,000 Nebraskan received developmental disability services in 2018, but another 2,300 were on the wait list. That number has risen to 2,900 over the last two years, she said.

Although the bill entails a large investment of state dollars, Cavanaugh said, the funds would improve lives and could keep young people out of the state’s child welfare system.

“Over a decade ago, the Legislature promised to fund the waiting list,” she said. “That promise has yet to be fulfilled.”

Edison McDonald, executive director of The Arc of Nebraska, testified in support of the proposal. Services for individuals with intellectual and developmental disabilities help keep them in their communities and out of institutional settings, he said.

Many people have been on the state’s wait list for as long as 10 years, he said, and are in danger of outliving their aging parents who have been their sole support systems. Other families have been driven to relinquish younger children because they cannot obtain needed services, he said.

“By failing to provide small, preventative services now … we end up incurring radically higher costs later on,” McDonald said.

Jenny Koley, who is on the wait list but receiving some services, testified as a self-advocate in support of LB493. Before the pandemic, Koley said, she was able to live on her own for several years with the help of independent living assistance. Being able to do so again will depend on waiver services, she said.

“I have been able to work as a part-time receptionist, with the help of a job coach, for over 10 years,” Koley said. “I take pride in going to work and being a productive citizen.”

Kristen Larsen also spoke in support on behalf of the Nebraska Planning Council on Developmental Disabilities. The mother of a son with developmental disabilities, she said the family reached a crisis point when he was 12 years old and only then were classified as a priority for services.

“We have a lot of children and families who are waiting to become a priority,” Larsen said. “Our system is set up to be reactionary and not preventative.”

No one testified in opposition to the bill and the committee took no immediate action on it.