RISP Data Bytes

Background

Medicaid Home and Community-Based Services (HCBS) fund support for people with intellectual disabilities in home or community settings. Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) are Medicaid-funded residential institutions for people with IDD.

Key Finding

Between 1982 and 2020, the number of people living in ICF/IIDs dropped by more than half (from 140,752 to 64,902), but the average cost rose from $64,304 (in 2020 inflation-adjusted dollars) to $145,306 per person per year. In those years, the number of people with IDD getting Medicaid-funded HCBS increased from 1,381 to 954,314. The average cost for HCBS increased from $4,390 (in 2020 inflation-adjusted dollars) to $49,723 per person per year. Today most people get HCBS which cost less and allow people to live, work, and play in community settings.

Two double bar charts side by side. The first chart is on annual spending per person comparing Waiver and ICF/IID settings in 1982 and 2020. In 1982, people with IDD receiving Waiver services received an average of $4,390 each. In 2020, people with IDD receiving Waiver services received an average of $49,723 each. In 1982, people in ICF/IIDs received an average of $64,340 each. In 2020, people in ICF/IIDs received an average of $145,306 each. The second chart is on total people served in Waiver and ICF/IID settings in 1982 and 2020. In 1982, 1,381 people with IDD received Waiver funding. In 2020, 954,314 people with IDD received Waiver funding. In 1982, 140,752 people lived in ICF/IIDs. In 2020, 64,902 people lived in ICF/IIDs. — Annual Cost per Person

Recommendations

Today most services for people with IDD are funded by HCBS Waivers and provided in home and community settings. But 64,902 people still live in Medicaid ICF/IID institutions. We should continue to focus on HCBS-funded support and continue to help people who want to move from ICF/IIDs to homes in the community. We should also address the shortage of direct support workers so everyone can get the services they need to live successfully in the community.

Data Source

Larson, S.A., Neidorf, J., Begin, B.C., Pettingell, S., & Sowers, M. (2024). Long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2020. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.

Authors

Sheryl A. Larson and Jon Neidorf. 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

Updated 5/1/25