RISP Data Bytes
More people with IDD get services in homes shared by three or fewer people
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.
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 home grew from 65,006 to 153,079.
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.
- 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.
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