RISP Data Bytes

Caseloads versus People Receiving Services

RISP Data Bytes, April 2024


The caseload is the total number of people with IDD known to state IDD agencies. This includes people receiving services and people who do not receive services, including people on waitlists. RISP also counts the number of people getting at least one service besides case management.

Key Finding

The number of people on IDD caseloads in the United States increased 21% from 1,308,676 in 2013 to 1,650,349 in 2020. The number of people receiving one or more services besides case management has also increased 21% from 1,134,193 in 2013 to 1,396,959 in 2020. The percentage of the caseload who received services varied from 83% to 87% over those years.

Total people served by state IDD agencies and proportion getting one or more service in addition to case management

Line graph showing growth in people on IDD caseloads and service recipients in the US from 2013 to 2020. In 2013, 1,308,676 people were on IDD caseloads and 1,134,193 people received services. In 2020, there were 1,650,349 people on caseloads and 1,396,959 people received services.


Most people on state caseloads get services. Some people with IDD who do not receive services really need them. Others do not need them right now but will need them later. For more people to receive services, states cannot just increase their caseloads, but will need to find ways to provide services to more people. For those who are not receiving services and not waiting, states must provide information for how to ask for services later.


The number of people known to state IDD agencies and the number receiving services increased 21% from 2013 to 2020. In 2020, 85% of the people known to state IDD agencies got one or more services besides case management. Some people who are known to state IDD agencies and not receiving services may be waiting for services. States should make sure people get the services they need.

Data Source

  • Larson, S. A., Neidorf, J., Pettingell, S., & Sowers, M. (n.d.). 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.


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 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.

Abbreviations used: IDD Intellectual or Developmental Disabilities; HCBS Home and Community Based Services