RISP Data Bytes

Background

In 2014, the Centers for Medicare and Medicaid Services (CMS) released the Medicaid Home and Community-Based Services (HCBS) Final Rule. The intent is to improve outcomes for people with intellectual and developmental disabilities (IDD) receiving HCBS. While we know people in smaller homes experience better outcomes, the rule was not meant to change the number of people living in the same home. If the rule were to indirectly affect the size of HCBS homes, we would expect it to reduce the number of people in bigger settings.

Key Finding

The percentage of service recipients living in homes of seven or more people has decreased over several decades. The rate of decrease slowed from 2014 to 2020 (from 32% to 26%) compared to 2007 to 2013 (from 24% to 20%). This notable change happened at the same time as the HCBS rule was put in place. However, we do not know why the change happened.

A line graph with a solid red and blue and a dotted red and blue line, all moving downward from left to right. The solid blue line represents the timeframe 2007 to 2013 and the solid red line represents the timeframe 2014 to 2020. The dotted red and blue lines indicate the trend. The line graph shows the decrease by percentage of service recipients living in non-family settings of 7 or more people. The line graph highlights the differences in the percentage decrease before and after the 2014 HCBS Final Rule. — Percentage of Service Recipients in Non-Family Settings of 7+ People

Recommendations

States must continue to support providers to decrease the number of people living in large group settings. This will help people with IDD have more choices about their lives. Furthermore, all HCBS recipients, regardless of their home size, should have their rights respected according to the final rule. We look to CMS to hold states and service providers accountable to the rule.

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

Jon Neidorf, Sherri Larson, and Brian C Begin. The RISP project is funded through a cooperative agreement 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.

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