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 Findings

Between 1982 and 2019, the number of people living in ICF/IIDs dropped by more than half (from 140,752 to 67,498), but the average cost rose from $63,086 to $140,210 per person per year. In those years, the number of people with IDDs getting Medicaid-funded home and community-based services increased from 1,381 to 930,356. The average cost for HCBS services increased from $4,305 to $48,458 per person per year. Today most people get home and community-based services which cost less and allow people to live, work and play in community settings.

This clustered bar chart shows the number of HCBS Waiver recipients increasing from 1,381 in 1982 to 930,356 in 2019 and the number of ICF/IID recipients declining from 140,752 to 67,498. The bars for 1982 are blue and the bars for 2019 are red. — Total People Served

This clustered bar chart shows the average annual cost for a person getting HCBS Waiver funded supports increasing from $4,305 in 1982 to $48,458 in 2019, and the average annual cost for ICF/IID services increasing from $63,086 to $140,210. The bars for 1982 are blue and the bars for 2019 are red. — Annual Cost Per Person

Recommendations

Today most services for people with IDD are funded by an HCBS Waiver and provided in home and community settings. But 67,498 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 an ICF/IID to a home in the community to do so. We should also address the shortage of direct support workers so everyone can get the services they have been promised.

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