Announcements
Here you'll find the latest RISP products and announcements.
Updated State Profiles Featuring New Charts and Table
June 25, 2025
The following updates are now live on RISP state profiles:
- State-level data are reported through FY 2023. (US data is still only available through FY 2020 for now.)
- In the “Medicaid Recipients by Funding Authority 1982 through 2023” chart, we now report recipients of 1915 (i) or (k) services.
- “Average Annual Per Person Spending by Age and Funding Authority for FY 2023” now reports on spending for state non-Medicaid LTSS, ICF/IID, targeted case management, other state plan HCBS, state plan 1915 (k), state plan 1915 (i), and HCBS Waiver for adults, children, and all ages.
- We added the “Demographic Characteristics of People Known to or Served by State IDD Agencies” table.
- We added the “Race and Ethnicity of People Known to or Served by State IDD Agencies” chart.
New Policy Research Brief and Video on Housing for People with IDD
June 25, 2025
2025-26 Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) fellow Zoua Vang and RISP Principal Investigator Sherri Larson published a new Policy Research Brief, Housing Options for Adults with Intellectual and Developmental Disabilities. The Brief uses RISP and other data to explore the disparities in housing choice for adults with IDD in the US.
In addition to the Brief, Zoua worked with Jerry Smith and Pete McCauley to produce a short video, A Place of His Own: Custom Housing for Patrick Jordan . The video explores how a Minnesota family worked together to ensure Patrick could live independently and with appropriate supports that will continue after his father passes away.
RISP at the AAIDD Annual Conference
June 25, 2025
RISP Principal Investigator Sherri Larson, Ph.D. attended the American Association on Intellectual and Developmental Disabilities (AAIDD) Annual Conference from June 23 to 25. She presented the poster presentation session Access to IDD services by race and ethnicity: A preliminary analysis . She also presented in a conference session called Using RISP data in policy and advocacy .
In addition to sharing her research, Sherri was honored with the AAIDD Policy Award for her work on RISP and other projects to inform public policy decisions. Congratulations Sherri on the well-deserved honor!
New Data Bytes
June 25, 2025
The RISP team recently published following Data Bytes:
More People with IDD Get Services in Homes Shared by Three or Fewer People: Fiscal Year 2020
Since the 1960s, living arrangements for people with intellectual or developmental disabilities (IDD) have shifted from institutions to smaller, community-based settings supported by Medicaid Home and Community-Based Services (HCBS). Between 2000 and 2020, the number of individuals living in their own homes rose from 73,147 to 154,634, and those in host/foster homes or small group settings increased from 78,680 to 148,629. Group settings of four or more decreased from 251,239 to 247,754. States should continue expanding access to smaller, person-centered living options.
Every year, the number of people with intellectual and developmental disabilities (IDD) receiving long-term supports and services (LTSS) grows. However, there are still people with IDD on waiting lists for services. This Data Byte shows how much the U.S. LTSS system would have to grow to serve all people with IDD waiting for but not yet receiving Medicaid Home and Community-Based Services (HCBS) while living in their own or family members’ homes.
Shift from State to Non-state Congregate IDD Settings, 1998 to 2020
In 1967, almost 200,000 people with intellectual and developmental disabilities (IDD) lived in large state institutions. Starting in 1981, the Medicaid Home and Community-Based Waiver helps people with IDD live with family or in small community homes. This Data Byte shows the decrease in people living in large state and non-state institutions between 1998 and 2020. Currently, about 85,000 people live in institutions. States should reduce this number because research shows people in smaller homes are happier and have more control over their living situation.
Jails, Prisons, and Large State Institutions: Selected Years 1985 to 2023
Many people with intellectual and developmental disabilities (IDD) who live in state-run facilities of 16 or more people have had previous criminal involvement. In 2023, 19% of people admitted to these facilities came from jails and prisons, and 16% of people leaving these facilities went to jails and prisons. To best support people with IDD and criminal backgrounds to leave institutions, they will need skilled support workers to ensure they remain safe and can thrive in their communities.
Since 1982, the number of individuals with Intellectual and Developmental Disabilities (IDD) receiving services in community settings has surged, while those in Medicaid-funded IDD institutions have been cut in half. Home and Community-Based Services (HCBS) prove far more cost-effective than institutional care in Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID). We should continue increasing access to community-based services, enabling transitions for those in ICF/IID who desire it. Addressing the shortage of direct support workers is crucial to fulfilling service commitments for all.
New Policy Research Brief
January 23, 2025
"Policy Research Brief: Declining Use of Residential Settings of Seven or More People with IDD "
The number of people with intellectual and developmental disabilities (IDD) living in institutions has been declining for decades. However, many people with IDD still live in settings with seven or more people. The use of large group facilities varies widely across states, and many of these facilities are not licensed or regulated. People live better in small settings than in institutions, so this brief recommends downsizing or closing large institutions and limiting the use of nursing homes and psychiatric facilities to house people with IDD. All provider-operated HCBS residential settings should comply fully with the 2014 Medicaid HCBS Rule settings provisions. Finally, states still housing people with IDD in settings of seven or more people should consult with states that have closed most or all such facilities to identify ways to reduce the use of large facilities.
New Data Bytes
December 8, 2024
"People with IDD Waiting for HCBS Waiver-Funded Supports in 2020"
In some states, people with IDD are on waiting lists for years before they receive necessary services. However, there are different ways of measuring waitlists and who to include when reporting on them. This Data Byte examines the difference between RISP and KFF waiting list data for people with IDD waiting for services.
"Before and After the HCBS Rule: Percent of People with IDD in Settings of Seven or More People"
The 2014 Medicaid HCBS Final Rule aims to improve outcomes for individuals with intellectual and developmental disabilities (IDD) and enhance their rights and choices. The rule coincided with a slower decline in settings of seven or more residents from 2014 to 2020 compared to 2007 to 2013. The reasons for this are unclear, but states should continue reducing large settings. CMS must hold states and providers accountable to the HCBS rule.
December 4, 2024
The 2020 technical report, In-Home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and Trends 2020, is now available for view and download. This report has data from 2020 and historical trend data on Medicaid, state, and locally funded supports for people with IDD.
In addition to the report, you can view state profiles, key questions, and infographics updated with 2020 data.
New Data Bytes
November 11, 2024
People with intellectual and developmental disabilities (IDD) typically have better lives when they live on their own, with family, or in other community-based settings compared to institutions. Services in the community are also much more cost effective compared to services in institutions. This Data Byte explores the difference in expenditures for these services and recommends policies to ensure people with IDD get appropriate and cost-effective services.
"People with IDD waiting for HCBS Waiver - Funded Supports in 2020"
In some states, people with IDD are on waiting lists for years before they receive necessary services. However, there are different ways of measuring waitlists and who to include when reporting on them. This Data Byte examines the difference between RISP and KFF waiting list data for people with IDD waiting for services.
Chart Gallery Update
October 30, 2024
RISP has retired the Chart Gallery. If you were hoping to use the Chart Gallery, please reach out to us at RISP@umn.edu and we can help you with data requests. Please also see our enhanced State Profiles for other downloadable data and figures.
RISP in the Media
October 14, 2024
RISP was recently cited in the President's Committee for People with Intellectual Disabilities Report to the President, "Advancing Independence and Community Integration for All: Supporting Individuals with Intellectual Disabilities Through High-Quality Home and Community-Based Services 
”.
New Interactive Features added to State Profiles
October 1, 2024
We've added new interactive features to our State Profiles. These features make it easier to reproduce specific data points of interest to inform your presentation or work.
New Data Byte, "Prevalence of Intellectual and Developmental Disabilities in the US"
September 26, 2024
In 2020, there were an estimated 6.1 million children with intellectual disabilities, autism spectrum disorders or developmental delays of whom 11% were known to state IDD agencies. There were an estimated 2.28 million adults with intellectual disabilities or developmental disabilities of whom 44% were known to state IDD agencies.
New Data Byte, “Expenditures per person by age in 2020”
September 9, 2024
The most common way people with intellectual and developmental disabilities (IDD) receive services is through Medicaid Home and Community-Based Services (HCBS) waivers. In 2020, there were 954,314 people with IDD receiving HCBS waiver services with average per person expenditures of $49,787.
RISP in the Media
July 16, 2024
RISP Principal Investigator Sherri Larson, Ph.D. was a guest on AUCD's Tuesdays with Liz podcast for their “Research for All” series.
2024 Conferences
July 16, 2024
If you are attending these conferences, please consider stopping by to learn more about our work.
- IASSIDD World Congress (August 5-8, Chicago)
- Poster: "Focus Group Study of Implementation of the US Home and Community Based Services Rule"
- Presentation: "US National Longitudinal Studies on the Impact of the 2014 Medicaid HCBS Rule and COVID"
- HCBS Conference (August 18-22 Baltimore)
- Presentation: "IDD Agency Views on the Implementation of the 2014 HCBS Final Rule"
New Data Byte, "People in Family Homes with Waiver and Non-waiver Services"
July 16, 2024
Most people with intellectual or developmental disabilities (IDD) live with family. Since 1982, services have expanded beyond institutions to group homes and family settings. From 1998 to 2020, those receiving services with family grew from 325,650 to 876,058. State-funded services decreased from 75% in 1998 to 40% in 2020, while Medicaid Waiver-funded services rose from 25% in 1998 to 60% in 2020. Despite more paid supports, many still lack them. States should continue paying family caregivers and use federal Medicaid funds to expand services and reduce waiting lists.
New Data Byte, "Fewer People with IDD Live in ICF/IIDs, But Progress is Not Equal"
July 16, 2024
Medicaid Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IIDs) are institutions where four to 500 people live and get support. Use of these facilities is declining, but progress is not equal across states. Four states have closed all ICF/IIDs, but 10 states still serve more than 30 people per 100,000 of the population in ICF/IIDs.
New Data Byte, "Institutionalized Adults with IDD, 1967 to 2020"
July 16, 2024
In 1967, 29.1% of adults with IDD in the U.S. lived in large state-run institutions, while most others resided with family. By 2020, only 0.7% lived in such facilities, with an additional 1.9% in other large settings. 46% of adults with IDD received services through state IDD agencies, and 5.8% of those receiving services lived in institutions or similar large settings. Research indicates better quality of life in community homes. We have made progress, but more support is needed for transitioning individuals from institutions to community settings, including increased funding and more direct support workers.
RISP in the Media
April 15, 2024
RISP was recently featured in...
An NPR story, "For Patients with disabilities, this doctor prioritized independence - and fun" (podcast and article )
The CBS News short documentary, "No place like home: People with disabilities' fight to stay out of institutions "
New Data Byte, "Caseloads versus People Receiving Services."
April 11, 2024
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.
2020 State Profiles are Live
April 11, 2024
State profiles are data snapshots summarizing the most recent and historical data in each state. They also feature state notes that describe important information explaining states' data.
New Data Byte, "Changes in Spending for Long-term Services and Supports between 1982 and 2019."
March 7, 2024
Since 1982, the number of individuals with Intellectual and Developmental Disabilities (IDD) receiving services in community settings has surged, while those in Medicaid-funded IDD institutions have been cut in half. Home and Community Based services prove far more cost-effective than institutional care in Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID). We should continue increasing access to community-based services, enabling transitions for those in ICF/IID who desire it. Addressing the shortage of direct support workers is crucial to fulfilling service commitments for all.