RISP Data Bytes

Background

Medicaid Home and Community-Based Services (HCBS) help people with intellectual and developmental disabilities (IDD) live and work in the community instead of in a nursing facility, hospital, or Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID). While many people now get Waiver-funded services, some are still waiting.

Key Finding

Between 2015 and 2021, the number of people with IDD who received Medicaid HCBS Waiver services or lived in an ICF/IID increased from 852,999 to 980,892. The number of people living in their own home or with a family member who were waiting for but not getting Waiver services decreased from 199,641 to 171,137. The percentage growth in Medicaid-funded services needed to serve the people waiting decreased from 23% to 17%. In 2021, there were 17 states without waitlists.

Double bar graph showing people with IDD receiving HCBS or ICF/IID services as well as how many people who were waiting for and not yet receiving HCBS while living with family or in their own homes in 2015, 2017, 2019, and 2021. In 2015, 852,999 people received LTSS and 199,641 people were waiting for and not yet receiving HCBS while living with family or in their own homes. The LTSS system would have had to grow 23% to serve all those people waiting. In 2021, 980,892 people received LTSS and 171,137 people were waiting for and not yet receiving HCBS while living with family or in their own homes. The LTSS system would have had to grow 17% to serve all those people waiting. — **Total Medicaid ICF/IID and Waiver Recipients, People in Own or Family Home Waiting for Waiver Funding on June 30 of 2013 to 2021, and Percent Growth Needed to Serve Those Waiting**

Recommendations

People with IDD rely on Medicaid HCBS Waiver funds to support them where they live, work, and play. The Medicaid HCBS Final Rule supports these choices as part of Centers for Medicare & Medicaid Services’ (CMS) efforts towards greater community inclusion for people with disabilities. States have made progress toward reducing the number of people waiting for HCBS funding. Continued efforts are needed to serve everyone who is waiting.

Data Source

Larson, S. A., Neidorf, J., Pettingell, S., Nye-Lengerman, K., & Vegas, L. (2025). Long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2021. University of Minnesota, Institute on Community Integration, Research and Training Center on Community Living. https://doi.org/10.13140/RG.2.2.10719.11682

Authors

Sheryl A. Larson, Jon Neidorf, and Sarah A. Hall.

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.

Updated 6/22/26