To find poetry in data

Where others see numbers, Sheryl Larson discovers poetry in large data sets

“I love analyzing data to learn what is happening and interpret what it means.”

Sheryl Larson has long been interested in the wellbeing of people with intellectual and developmental disabilities (IDD). During college she worked in a large residential facility that supported people with IDD. As a graduate student at the University of Minnesota, she joined the staff of the Institute on Community Integration where her first project was to review two decades of deinstitutionalization studies. “My job was to see if there was a pattern of outcomes for people who had moved from state institutions to their communities and whether those outcomes were positive or negative.”

The resulting papers by Larson and colleagues have been widely used in legislatures and courtrooms across the country as advocates argue why state institutions need to close.

“Statistics are a tool to answer important questions. I enjoy showing people how data can be used to help people with intellectual and other developmental disabilities have better lives.”

Working with survey research, secondary analysis of large data sets, and longitudinal studies, Larson’s work focuses primarily on Medicaid funded long-term supports and services, the direct support workforce, characteristics of people with IDD, and service outcomes. The Research and Training Center on Community Living is one of the nation’s leading research centers exploring all aspects of community living for people with IDD.

Graphic 4.7 million people in the U.S. had intellectual or developmental disabilities in 2013
Graphic 4.7 million people in the U.S. had intellectual or developmental disabilities in 2013

Larson enjoys developing products that describe research findings in understandable ways. The Residential Information Systems Project (RISP), for example, collects complex data about Medicaid services. Larson and the project team translate this data, balancing specificity of detail with readability, into information that is used by Congress, state legislatures, and state agencies to understand the progress they are making in supporting people with IDD.

“The power of RISP is showing states how they are doing compared with other states and the national average, and summarizing historic state and national trends in residential and community supports for people with IDD.”

Larson is not just deconstructing large data sets. She is translating the information into public policies and intervention strategies states can use to improve their service systems.

In the data collected by Larson and colleagues, we can see our nation’s progress in reducing the number of people living in state IDD institutions from a peak of over 190,000 people in 1967 to fewer than 25,000 today. Many states have closed all of those institutions demonstrating that it is possible to support all citizens with IDD in their own home, the home of a family member, or in another community setting. There are still people who argue that institutions should remain open, but the research suggests otherwise. And Larson wants to make sure decision makers have access to the evidence.

Graph of deinstitutionalization by time
Graph showing deinstitutionalization progress over time

While America has made tremendous progress in developing in-home and community-based supports, research by Larson and colleagues shows that many people with IDD still live in group settings they did not chose, with people they did not chose, and have little choice about when to get up, what to eat, what to wear, or where and with whom they spend their time.

Larson comes to work knowing her research helps others use the best approaches in supporting individuals with disabilities. “It’s easy to come to work when the job is interesting and there are opportunities to collaborate with researchers all over the world on topics that are of great importance to people with IDD.”

Contact Information

Institute on Community Integration

102 Pattee Hall, 150 Pillsbury Dr SE, Minneapolis, MN 55455

P: 612-624-6300 | F: 612-624-9344

ici@umn.edu

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