RISP Data Bytes
Institutionalized Adults with IDD, 1967 to 2020
Background
In 1967, there were about 298,976 adults with intellectual and developmental disabilities (IDD) in the U.S. (Haber, 1969). Of those, 86,976 (29.1%) lived in state-run IDD facilities of sixteen or more people (Larson et al., 2024). Most people with IDD who did not live in institutions lived with family members. Few people with IDD received publicly funded services outside of state-run institutions.
Key Finding
By 2020, of the 2,281,000 adults with IDD in the U.S., 14,713 (0.7%) lived in state-run IDD facilities of sixteen or more people. An additional 42,656 adults (1.9%) lived in non-state IDD facilities of sixteen or more people, in nursing homes, or in psychiatric facilities. Of the 1,005,401 adults (46% of all adults with IDD) getting services through state IDD systems in 2020, 5.8% lived in state or non-state IDD institutions, nursing homes, or psychiatric facilities (Larson et al., 2024).
Percent of Adults with IDD in Large State-Run IDD Facilities 1967 and 2020
· The figure is a bar chart with two bars
· The bar on the left represents the percentage of adults with IDD in 1967 living in large state-operated IDD facilities. That number is 29.1 percent.
· The bar on the right represents the percentage of adults with IDD in 2020 living in large state-operated IDD facilities. That number is 0.7%.
· The chart highlights the significant decline in adults with IDD living in large state-operated IDD facilities between 1967 and 2020.
Recommendations
Research shows that people with IDD live better lives in community homes than in institutions (Larson, Lakin, & Hill, 2012). We have made progress over the last fifty years supporting people with IDD to move into smaller settings in the community, but there are still too many people living in institutions. We need to help those who want to move from institutions to do so. We must continue to develop and fund home and community options for all people with IDD. We must also ensure there are enough direct support workers to provide needed supports.
Data Source
- Larson, S. A., Neidorf, J., Pettingell, S., & Sowers, M. (2023). Long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2019. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.
Authors
Sheryl A. Larson, Jon Neidorf, and Brian C. Begin. The authors acknowledge the contributions by Jerry Smith, Sarah Curtner and John Smith to this product.
References
Haber, L. D. (1969). Epidemiological factors in disability: I. Major disabling conditions (Vol. 2). Department of Health, Education, and Welfare, Social Security Administration, Office of Research and Statistics.
Larson, S., Lakin, C., & Hill, S. (2012). Behavioral Outcomes of Moving from Institutional to Community Living for People with Intellectual and Developmental Disabilities: U.S. Studies from 1977 to 2010. Research and Practice for Persons with Severe Disabilities, 37(4), 235–246. https://doi.org/10.2511/027494813805327287
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