RISP Report Available Now

Nearly 8.4 million people in the United States have an intellectual and/or developmental disability (IDD), a new report from the Institute on Community Integration shows. The Residential Information Systems Project’s (RISP) 2020 technical report, along with other information and reports from previous years, can also be viewed and downloaded on the RISP website.

The report includes more detailed disability prevalence estimates than have been available previously, along with new information about death rates among people with IDD during the first months of the COVID-19 pandemic. It contains detailed information on how many children and adults with IDD get paid supports, in which type of settings they live, and how their support differs depending on the state where they live. It also tracks the number of people with IDD who are on waiting lists to receive services.

Among the findings:

• Of the estimated 2.3 million adults with IDD, fewer than half (44 percent) are on state agency caseloads.
• Nearly three-quarters of people with IDD who get long-term services or supports live with family members (61%) or in their own homes (11%).
• Since 1998, the number of people with IDD receiving publicly funded services has nearly tripled, with recipients of the Medicaid Home and Community-based Services (HCBS) program accounting for most of the increase.

“The growth in HCBS waiver funding is especially notable,” said Sheryl Larson, RISP principal investigator. She said a 2014 change in federal policy, which took a decade to be fully implemented, requires that settings receiving waiver funding meet standards for person-centered living. “Thus, over time, states have been more aggressive in using Medicaid HCBS funding to support families. It has driven the dramatic increase in the number of people living with their families who are getting supports.”

Death rates among adults with IDD served by state IDD agencies rose by about 10 percent in the first half of 2020 compared with 2019, said ICI’s Jon Neidorf. The jump was even larger among people living in large institutions, the researchers said. The number of deaths as a proportion of all people leaving institutions rose from 30% in 2019 to 43% in 2020.

“This tracks with other research showing people in larger facilities were more susceptible to dying from Covid,” Larson said.

RISP is an Administration on Community Living (ACL) Longitudinal Data Project of National Significance (PNS) that maintains records on residential, in-home, and community-based supports for people with IDD. RISP reports chronicle the history of institutionalization, deinstitutionalization, and the development of community-based long-term services and supports for people with IDD in the 50 U.S. states and the District of Columbia. States, agencies, and researchers use RISP data to better understand trends in community living among people with IDD. The National Association of State Directors of Developmental Disabilities Services, along with state IDD agency directors and others, contribute to the project, which began in 1977.

For more information, visit risp.umn.edu.