RISP Data Bytes

Background

Deinstitutionalization is the process of people with intellectual and developmental disabilities (IDD) leaving large institutions for small community homes. The Medicaid Home and Community-Based Services (HCBS) Waiver program which began in 1981 has helped people with IDD leave institutions and live more independently.

Key Finding

Between 1998 and 2020, the number of people in settings of 16 or more people fell sharply from 51,485 to 15,322 (70%) for state-operated settings and from 36,599 to 20,929 (43%) for non-state settings. The number of people in settings of seven to 15 people also declined from 6,646 to 4,222 (36%) for state-operated settings and from 47,296 to 44,789 (5%) for non-state settings. Today most people living in large IDD settings live in non-state operated settings.

Multiple line chart titled “People in Large IDD Facilities, 1998 to 2020.” In 1998, 51,485 people lived in state-run institutions of 16 or more people, 6,646 lived in state institutions of seven to 15 people, 36,599 lived in non-state institutions of 16 or more people, and 47,296 lived in non-state institutions of seven to 15 people. Over the next two decades, all these numbers decreased. In 2020, 15,322 people lived in state-run institutions of 16 or more people, 4,222 lived in state institutions of seven to 15 people, 20,929 lived in non-state institutions of 16 or more people, and 44,789 lived in non-state institutions of seven to 15 people.

Recommendations

Deinstitutionalization must continue. States must find ways to continue to reduce the number of people in large facilities whether those facilities are state- or non-state-operated. People in small community homes live better lives overall. People in small homes have more opportunities to make choices about their lives and to spend time with family, friends and neighbors without disabilities than those in institutions.