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 hospital or 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 2014 and 2020 the number of people with IDD HCBS funded services or living in an ICF/IID increased from 820,599 to 985,888. The number of people living in their own home or with a family member who were waiting for but not getting Medicaid HCBS Waiver funded supports decreased from 216,328 to 174,785. The percentage growth in Medicaid funded services to serve the people waiting decreased from 26% to 18%. In 2020, there were 16 states without waitlists.

Double bar graph showing people with IDD receiving HCBS or ICF/IID services, how many people waiting for and not yet receiving HCBS while living with family or in their own homes in 2014, 2016, 2018, and 2020. In 2014, 820,599 people received LTSS and 216,328 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 26% to serve all those people waiting. In 2014, 985,888 people received LTSS and 174,785 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 18% 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 2010 to 2020; and Percent Growth Needed to Serve Those Waiting

Recommendations

People with IDD rely on Medicaid HCBS Waiver funds to support them where they want to live, work, and play. The Medicaid HCBS Final Rule supports these choices as part of CMS’s 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 Sources

Larson, S.A., Neidorf, J., 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, 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.

Updated 2/27/25