June 2022
A man in a wheelchair and his DSP stroll through a park.

Supporting people with intellectual and/or developmental disabilities (IDD) to move from large, state-run institutions to individualized community settings has been a foundational aim of the Institute on Community Integration for more than 30 years. With the end game in sight, what is left to be done?  

A public forum on June 23 discussed stark differences among states in their approaches to ending institutional care, challenges threatening the progress of deinstitutionalization, research documenting how the lives of people with IDD changed after moving into community settings, and policy recommendations for supporting all individuals with IDD in home and community settings. 

ICI’s Sheryl Larson presented her recent Policy Research Brief, Are Large Institutions for People with Intellectual and Developmental Disabilities a Thing of the Past?

“A lot of states have already figured this out, including 17 that have completely closed their institutions,” said Larson. “So, what do we have to do now so we don’t forget the people who still live in institutions? How do we make sure we aren’t forgetting them?” 

Families play a critical role, Larson said, but also face daunting challenges today because of the shortage of caregiving and direct support professionals, made worse by the global pandemic. 

“Since 1998, we’ve more than doubled the number of people receiving publicly funded supports while living with a family member,” Larson said. “Very few people have entered large, state-run institutions since then, but we must shore up the workforce supporting those who are living in the community.” 

Mary Sowers, executive director of the National Association of State Directors of Developmental Disabilities Services, and Celia Feinstein, former executive director of Temple University’s Institute on Disabilities, discussed the implications of the research for the field at the event.  

Larson, director of the Residential Information Systems Project (RISP), is continuing a line of research on residential services and deinstitutionalization for people with IDD that was started in the 1970s by founding ICI Director Robert Bruininks and Charlie Lakin, former director of the Research and Training Center on Community Living (RTC/CL).  The RTC/CL provides research, training, and technical assistance focused on supporting people with IDD to fully participate in their communities of choice. 

RISP is a federally designated Longitudinal Data Project of National Significance for the Administration on Community Living, part of the U.S. Department of Health and Human Services. Earlier this year, ICI published a RISP report examining the living arrangements of people with IDD from 1977 to 2018, which projected the number of people with IDD living in large, state-run institutions could approach zero by 2025.  

“ICI has partnered with the disability community for decades and many institutions are now gone, so it’s a little bit of a celebration, but we are not done,” said Larson. “We cannot forget the people who are still living in congregate settings. We’ve got 30 years of research backing up the assertion that people have better lives when they live in settings where they can make choices about how they live.”