More than 2,000 Nebraskans qualify for developmental disabilities services but are having to wait years, usually three to six years, to get them.
They have been forced onto a waiting list that's grown over the past decade, despite a push in 2008 to develop a strategic plan to address current and future needs of people with disabilities and their families.
So disability advocates are beginning a campaign to end the waiting list.
“It is absolutely unacceptable that we have over 2,332 Nebraskans with disabilities who are not receiving these vital supports,” said Edison McDonald, executive director of the Arc of Nebraska.
McDonald said the last time there was any real decrease to the waiting list was in 2008. But with term limits it is no longer an issue that many state senators are familiar with or even understand, he said.
"And more importantly, this isn't an issue the community understands," he said.
So advocates want to have a conversation with the community, not just about getting more money from the state, but about looking at different Medicaid waivers, which are designed to provide services and supports that assist eligible children and adults, he said. Other states have a number of waivers that Nebraska could consider.
"We can't go and continuously try and just toss little bits at this," McDonald said.
He'd like to see the waiting list eliminated, or at least cut by half.
While some might say it's just an issue of having the money to pay for it, McDonald says this is the kind of thing that matches Nebraska values. And the up-front costs, while expensive, are cheaper than the back-end costs, he said.
Without supports of low rent, help with chores, with balancing a checkbook, or finding an appropriate job to live as normal a life as possible, people with disabilities can find themselves homeless or prone to expensive emergencies, bad for the state and for families.
There are actually two waiting lists, the second one for vocational rehabilitation services, he said. That's employment help at the same time Nebraska is having a hard time finding enough workers.
Lincoln Sen. Kate Bolz said the Legislature put $1.2 million per year in the coming two-year budget toward the vocational rehab waiting list. The issue is complicated by the question of putting money into making sure people have basic services while also needing to get people who have already qualified into jobs.
"How do you move forward in a way that promotes fairness and equality?" Bolz said. "Do you try to make sure the services are as meaningful as possible? Or is it more important to get anyone who is otherwise eligible into services?"
The whole community benefits when people with disabilities have their needs met and have jobs, Bolz said. But the solutions are complicated and need to be done in a fair, sustainable and high-quality manner.
McDonald said families have been told again and again by senators that they are going to work on the waiting lists, and they have learned to not believe the promises. They have gotten to the point they don't know what to do.
"Nebraskans want to see action," McDonald said.