RISP Data Bytes
More People with IDD Get Services in Homes Shared by Three or Fewer People
RISP Data Bytes November 2023
Background
RISP gets information each year from state IDD agencies about the places people with IDD live. In 1977, 247,780 people with IDD lived in large institutions. Services were not available in other settings. Today, with Medicaid Home and Community Based Services (HCBS) funding, six of ten people getting services live with a family member. One quarter live in homes shared by six or fewer people. The rest live in bigger settings. These data do not include people with IDD living in psychiatric facilities and nursing homes.
Key Finding
Between 1999 and 2019, the number of people living in group settings of four or more people did not change. But the number of people living in smaller settings more than doubled. The number of people living with one or two roommates or with a host or foster family grew from 65,966 to 148,605. The number of people living in their own homes grew from 65,006 to 153,079. (The data in the graph do not include people with IDD living in family homes, psychiatric facilities, and nursing homes.)
People Not Living with Family Members
This graphic compares the following settings: group 4 or more people, host/foster, group 3 or fewer people, and own home. The graphic shows the number of people living in each setting for the years 1999, 2004, 2009, 2014, and 2019. During the listed years the number of people living in the setting group 4 or more people stayed about the same, while the number of people living in the setting host/foster, group 3 or fewer people and own home increased. This trend indicates that more people have been moving into settings with fewer people or into a home of their own.
In 1999 there were 242,540 individuals living in the setting group 4 or more people, 65,966 individuals living in the setting host/foster,group 3 or fewer people, and 65,006 individuals living in their own home.
In 2004 there were 253,268 individuals living in the setting group 4 or more people, 90,451 individuals living in the setting host/foster, group 3 or fewer people, and 107,157 individuals living in their own home.
In 2009 there were 262,517 individuals living in the setting group 4 or more people, 84,935 individuals living in the setting host/foster, group 3 or fewer people, and 122,088 individuals living in their own home.
In 2014 there were 262,306 individuals living in the setting group 4 or more people, 127,459 individuals living in the setting host/foster, group 3 or fewer people, and 125,078 individuals living in their own home.
In 2019 there were 250,852 individuals living in the setting group 4 or more people, 148,605 individuals living in the setting host/foster, group 3 or fewer people, and 153,079 individuals living in their own home.
Recommendations
People with IDD can now get Medicaid Home and Community Based Services (HCBS) to support them where they want to live, work and play. The Medicaid HCBS rule supports these choices. States should make sure that Medicaid HCBS funds are available to people with IDD who need them. Medicaid should make sure that states and providers are following the HCBS rule.
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