Announcements
Here you'll find the latest RISP products and announcements.
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.