RISP Data Bytes
Most People in Large IDD Facilities Now Live in Settings Operated by Nonstate Providers
Background
Nearly 200,000 people with IDD used to live in large state institutions. Now only 16,200 remain. At first, most people who left state run IDD institutions moved to nonstate IDD institutions. Starting in 1981, the Medicaid Home and Community-Based Services Waiver option provided funds so people could get supports while living with a family member or in a small community home.
Key Finding
Between 1998 and 2019, the number of people living in state institutions serving 16 or more people with IDD decreased from 51,485 to 16,200 (69%). The number of people in nonstate institutions decreased from 36,599 to 18,009 (51%). The number of people living in state facilities serving seven to fifteen people with IDD declined by 2,162. But 48,495 people still lived in nonstate facilities serving seven to fifteen people with IDD in 2019.
Change in the Number of People in Large IDD Facilities Between 1998 and 2019
The figure shows the change in number of people in large IDD facilities between the years 1998 and 2019. There are four categories: non-state facilities of 7 - 15 people, non-state facilities of 16 or more people, state facilities of 7 - 15 people, and state facilities of 16 or more people.
- In 1998 there were 51,485 people living in state facilities of 16 or more people and in 2019 that number decreased to 16,200 people. In 1998 there were 36,599 people living in non-state facilities of 16 or more people and in 2019 that number decreased to 18,009 people.
- In 1998 there were 6,646 people living in state facilities of 7 - 15 people and in 2019 that number decreased to 4,484 people. In 1998 there were 47,296 people living in non-state facilities of 7 - 15 people and in 2019 that number increased to 48,495 people.
With the exception of non-state facilities of 7 - 15 people, the trend is there are less people living in large state and non-state IDD facilities.
Recommendations
Nearly 90,000 people still live in facilities serving 7 or more people with IDD. States must find ways to reduce that number. It doesn't matter if those facilities are run by the state or by nonstate providers. People in smaller homes are happier and are more likely to chose where they live, who their roommates are, and how they spend their time and money.
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.
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