RISP Data Bytes
Behind the Numbers at RISP
Background
As a Project of National Significance (PNS), RISP provides critical and unique insights about residential supports to people with IDD across the United States, but RISP collects other data too.
Key Findings
While RISP distributes and collects survey data from each state annually, the RISP team also collects other important data to maximize RISP’s accuracy, reach, and impact. Here are a few interesting data bytes beyond RISP survey data.
Who uses RISP Data? Researchers, advocates, policy makers, service providers, legislative staff, families, reporters, educators, government agencies, direct support professionals, and the public
Number of countries who have accessed RISP Data Bytes: 26, including Malaysia, Mongolia, Trinidad & Tobago, Turkey, and more
Total Data Byte downloads since 2024: 7,551
Mailing list members: 485
1977: The year RISP first began to systematically gather, maintain, and analyze data on Medicaid funded long-term supports and services (LTSS) for people with I/DD
Recommendations
There are lots of ways to use data from RISP to advance the inclusion of people with IDD. National longitudinal data is powerful tool. It’s important to support national longitudinal data projects like RISP as they help us understand and see changes over time, establish sequences or patterns of change, and inform public policy and spending.
Data Source
Larson, S.A., Neidorf, J., Begin, B.C., Pettingell, S., & Sowers, M. (2024). Long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2020. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.
Authors
Sheryl A. Larson, Kelly Nye-Lengerman, and Jon Neidorf.
The RISP project gets funds from the Administration on Community Living, U.S. Department of Health and Human Services, Cooperative Agreement #90DNPA0006 with supplemental funding from the National Institutes on Disability, Independent Living and Rehabilitation Research Grant #90RTCP0011.
Abbreviations used: IDD = Intellectual or Developmental Disabilities; HCBS = Home and Community Based Services
Updated 9/8/25