Policy Research Brief, Vol. 31, No. 3

Research Issue

The number of people with intellectual or developmental disabilities (IDD) living in institutions has been declining for decades. However, many people with IDD still live in settings with 7 or more people.

People living in small settings live better lives than those living in institutions. For example, people living in small settings can make more choices about their lives. They are also less likely to get viruses such as COVID-19 and other spreadable diseases (e.g., Levinson, et al., 2024; Ticha et al, 2013).

The Centers for Disease Control and Prevention (CDC) Healthy People 2030 goal DH-03 is to reduce the proportion of people with IDD living in facilities with seven or more people to 11.5% by 2030.

Study Background

The Residential Information Systems Project (risp.umn.edu) at the University of Minnesota has tracked the size and type of living arrangements for people with IDD who get Medicaid or state-funded LTSS since 1977. This brief is based on the Fiscal Year 2020 RISP survey results.

Policy Recommendations

• Downsize or close IDD facilities serving 7 or more people.

• Limit the use of nursing homes and psychiatric facilities to house people with IDD.

• Ensure provider-operated HCBS residential settings of all sizes comply with all of the 2014 Medicaid HCBS Rule settings provisions.

• States still housing people with IDD in settings of seven or more people should consult with states that have closed most or all such facilities to identify ways to reduce the use of large facilities.

Key Findings

Many people still live in large settings.

In 2020, among people with IDD getting long-term supports who didn’t live with a family member, 113,819 (20%) lived in settings of 7 or more people. Of them, 49,533 (9% of all people with IDD in non-family homes) lived in IDD-specific group settings of seven to 15 people, 36,283 (6%) lived in IDD group settings of 16 or more, 25,749 (5%) lived in nursing homes, and 2,254 (0.4%) lived in psychiatric facilities.

In 1998, 46% of people with IDD getting long-term supports who didn’t live with a family member lived in settings of 7 or more people. In 2020, that percentage was down to 20%. If the trend continues to decline at the same rate, the CDC goal will be achieved by 2028.

There are big differences across states in the use of large group facilities.

States in which more than 50% of people with IDD in residential settings live in places with 7 or more people are Illinois, Louisiana, and Mississippi. States in which 5% or fewer people in residential settings live in places with 7 or more people include Colorado, the District of Columbia, Hawaii, New Hampshire, Oregon, Vermont, and Wisconsin.

States differ for many reasons, including state Medicaid policy, state wealth, and previous efforts downsizing or closing large facilities.

While some IDD facilities of 7 or more people are licensed and regulated as institutions, many are not.

Of the 85,262 people in IDD group settings of seven or more people, 45,618 were in Medicaid institutions licensed as Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID). The remaining 39,644 people received services funded by Medicaid Home and Community-Based Services (HCBS) or by state or local funds.

HCBS has rules that emphasize that people are integrated in their communities, while ICF/IDD regulations focus more on physical space and do not have similar rules.