Making Change: Community Living in the 21st Century

Researcher Renáta Tichá (left) interviewed self-advocates at the ACT State Self-Advocacy Conference in Minneapolis in November 2025. “People are telling us how to improve the system and where they need better support,” she said. “We need to think about a more nimble, flexible service system.”

If you are interested in participating in an interview or have questions about the study, contact Renatá Tichá at tich0018@umn.edu

As communities themselves change, how are people with intellectual and other developmental disabilities (IDD) affected by that change?

In the midst of a five-year grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), researchers at the University of Minnesota’s Institute on Community Integration are documenting the experiences of people with IDD and their families, from longstanding concerns about safety and neglect to more modern worries about privacy as artificial intelligence plays a bigger role in service delivery.

“It’s really time to figure out what exactly is meant by community living for an increasingly diverse population in the 21st Century,” said Renáta Tichá, principal investigator. “We’re looking at multicultural aspects, including gender, race, ethnicity, and language, along with varied types of residential settings where people with IDD live.”

Her team is conducting interviews with people from diverse backgrounds with and without IDD across the country, along with family members of people with IDD. In November, the team conducted interviews at the ACT State Self-Advocacy Conference in Minneapolis.

“The conference was really nice because we had self-advocates, family members, and providers all in one place, so we were able to get into some depth,” Tichá said. “We realized that the conversation around community living right now is not just about multicultural issues and technology, but some older conversations around safety, stigma, abuse, and neglect. There were strong feelings about the lack of inclusion and community participation – things that we thought we had moved on from, but they were coming out loud and clear, and I don’t think this sentiment has reached its peak yet.”

Still, there is power in those loud, clear messages, some of which date back many years in participants’ memories.

“People are feeling more comfortable today talking about some of the challenges in community living,” she said. “In the 21st Century, we have largely already moved out of institutions, but there are still valid experiences of emotional and physical abuse and exclusion in settings that are not institutions.”

The team has now completed more than half of its planned national interviews and is starting the data analysis that will lead to building a new model for community living, she said. The work will increase understanding of how cultural factors interact with disability, identify potential solutions to the high turnover rates in the direct support workforce, and examine outcomes of policies and systems that affect people with IDD and their families.

Documenting the voices of people with IDD and their families will expose negative experiences, but also helpful, informed suggestions for moving forward, Tichá said.

“People are telling us how to improve the system and where they need better support,” she said. “This will create a building block toward replacing the old structures we still have in place from the institutional days. We need to think about a more nimble, flexible service system. I’m a researcher, so I’m excited that this information and the way we present it could inspire people to start thinking about doing services for adults with IDD differently. We are at a breaking point where we can make some real change.”