University of Minnesota program for disabled people could fall to federal budget ax

After more than 40 years as Minnesota’s only federally funded research center focused on people with intellectual and developmental disabilities, the Institute on Community Integration would seem to have a solid foundation.

But Amy Hewitt, director of the center dedicated to keeping disabled people in the community rather than in institutions through its research and training programs, worries that the federal dollars that comprise 70% of the center’s funding — about $13 million — are at risk.

Without that money, Hewitt said, the center’s work to bolster community-based programs and train parents and others to fight for them could cease.

The center isn’t the only program at the U losing federal funding. According to a U spokeswoman, as of June 20, 100 previously awarded federal funds totaling $40.9 million have been withdrawn from U programs by the Trump administration, part of broader cuts to colleges and universities.

“That funding provides the infrastructure of everything we do,” Hewitt said of the money that mostly comes from the U.S. Department of Health and Human Services.

“That’s a big concern for us, because for 40 years, we’ve been gathering data across the country tracking where people with intellectual or developmental disabilities live [and] how many institutions have closed,” she said. “That data collection would cease. And it’s been used by policy makers all over the country to make decisions about services.”

Zoua Vang used to work as a journalist. Now, armed with research and strategies from the institute, she’s a passionate — and knowledgeable — champion for her 16-year-old daughter who has a seizure disorder. Vang said the institute has given her the information she needs to fight for her daughter to stay in the community.

The institute’s work involves more than research. It offers programs that teach parents how to use the research in their meetings with educators as they shape their children’s future. It also connects with a range of professionals — from health care to education to local government — to help them identify people with developmental or intellectual disabilities and guide them to services that allow them to stay in the community.

“We can become leaders and experts in the field,” Vang said. “You get to go in and say, ‘I want to make a difference in this disability world. I want to develop my passion and my interest.’”

She’s part of a cadre of parents and professionals from “all walks of life” who have learned how to best advocate for and accommodate people with disabilities.

“Finally, our voices are able to break through the surface and impact policy and policy discussions,” Vang said. “And I think that’s what [the institute] does that is so beautiful. It’s not just people who are elected or who are budget people making these decisions. It’s people whose lives are being impacted.”

Prince Cole contracted polio when he was a teenager in his native Liberia. Paralyzed from the neck down, the 40-year-old has learned through the institute how to better advocate for himself, get involved in his community and track down and apply for resources to live a better life.

“Because of the institute, I was able to learn how to organize — how to bring research to immigrant communities, to parents who have children with autism and don’t know how to get resources,” he said.

He’s been able to form a nonprofit that works with families of children with autism to find the help they need to give their children better tools for living, he said.

“I was able to reach out and start to make a difference,” Cole said. “These [leadership] programs at the institute are very, very powerful.”

A loss of funding for the institute, Cole said, would mean a loss of community voices. It would mean fewer people gaining the confidence and expertise to fight for the needs of their communities. He’s willing to fight to keep that from happening, such as writing to lawmakers.

“I really want for the program to continue going on,” he said.