U program that works to keep disabled people in the community 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 like it has 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 those funds, Hewitt said, the center’s work to bolster community-based programs and to 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 According to a U spokeswoman, as of June 20, 100 previously awarded federal funds totaling $40.9 million have been withdrawn from U programs by the Trump administration, part of broader cuts to colleges and universities.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 said she’s a passionate — and knowledgeable — champion for her 16-year-old daughter who has a seizure disorder. Vang said the institute has armed her with the information she needs to fight for her daughter staying in the community.

“What I really loved was how they took this dense research and made it usable and understandable to the normal human being,” said Vang, who has been researching options for what will happen to her daughter and her housing after Vang dies. “I’m a planner. And, as a parent of a child with a disability, you’re always thinking about what’s going to happen to my child.”

But 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, as well as connecting with a range of professionals — from health care to education to local government — to help them identify people with developmental or intellectual disabilities and connect them with the 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 and accommodate people with disabilities in their communities.

“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 15 or 16 in his native Liberia. Paralyzed from the neck down, the 40-year-old has learned through the institute how to not only better advocate for himself, but also how to get involved in his community and how to track down and apply for the resources to live a better life.

Once a month, Cole meets with a group of people with disabilities to learn how to lead, sharing ideas.

“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.

Because of the institute, he was 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 said he’s willing to fight to keep that from happening, such as writing to lawmakers to advocate for the institute.

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

While Hewitt has not been told the institute will lose its federal funding, she said the way health and human services funding has been slashed nationally has her not only preparing for a loss of funding for the institute, but for a range of health and human services programs overall — including those designed to keep people with disabilities living in their homes and in their communities.

“The 50 years of progress we’ve made in this country and in our state to get people out of institutions and help them live their lives in the community — that’s all at risk. And I think that’s the biggest fear," she said. “We’ve been here all along, pushing for community living, community support, helping our communities figure out how to do that well.”