Inclusion Starts at Home

Why should we know where people with intellectual and other developmental disabilities (IDD) live? It’s a matter of inclusion.

About 8.6 million people in the United States were living with IDD in 2021, an increase of more than 1 million over five years, new data from the Institute on Community Integration’s Residential Information Systems Project show.

Of those, about 1.4 million people receive public support services. The RISP report helps illustrate their level of community inclusion by detailing their living arrangements – from state-run institutions to homes of their own.

The report highlights significant state differences in where people with IDD live, an indication of how states allocate federal Medicaid funds. Nationwide, the number of people with IDD receiving services in homes and smaller settings increased dramatically in the last 40 years, from 1,381 in 1982 to 953,571 in 2021, according to the report. This was made possible when the Medicaid program created a waiver that allows people with disabilities to receive home and community-based services (HCBS).

“HCBS waivers have allowed many people with IDD to live with family members, in smaller group homes, or on their own with support, and research shows they have a lot more autonomy and control over choices in their lives in these smaller settings,” said Jon Neidorf, project coordinator for RISP.

The new RISP report also details the sharp rise in deaths among residents in institutions during and after the COVID-19 pandemic, said Sheryl Larson, RISP’s principal investigator.

The report contains data from the fiscal year ended June 30, 2021, but preliminary data through 2024 shows the pandemic death toll didn’t begin to decline until 2023, Larson said.

“In 2020, the number of people dying as a percentage of all those leaving institutions jumped to 40% (an increase of about 10 percentage points from 2019). And in 2021, it was up to 44%, so almost half of the people leaving institutions were leaving because they died. That’s a really big jump, and it shows the danger of living in institutions,” she said. The percentage was also elevated because fewer people were able to leave institutions during the pandemic, she said.

“There are other risks associated with institutions, including human rights and individual choice issues, but this finding highlights an important reason why large settings can be dangerous places for vulnerable people.”

While the overall number of people with IDD who live in state-run institutions has declined dramatically in the last several decades, the proportion of younger people in those facilities with mental health and behavioral challenges is increasing. Further, there are now more people in privately run institutions than in state institutions, and their number is declining much more slowly, Larson said.

“There are two groups of people living in state institutions today,” Larson said. “One group is older, with more significant intellectual disability, and the other is younger, with mild or no intellectual disability. Most people entering state-fun facilities today are younger and have less significant disabilities.”

People with intellectual disability are living longer today, she noted, which has implications for future living arrangement needs. As of 2021, the data show, of the 1.4 million people with IDD receiving long-term services and supports from state IDD agencies, most live with a family member (61%) or in an individualized setting such as their own home (11%) or with a host or foster family (5%). Just 15% live in group homes with six or fewer residents, and 8% live in larger facilities, the RISP report shows.

Among people with IDD living with aging caregivers, or who are aging themselves and acquiring mobility limitations or increased support needs, many will need to move to a different setting, which will increase demand for already-scarce individualized community living arrangements, Larson said.

“The ongoing dire shortage of direct support professionals (DSPs) is a concern for people with IDD, regardless of where or with whom they live,” she said. “During COVID-19, many states decided to pay family caregivers to provide supports to adults with IDD. That provided an income for family members who stayed home to care for a loved one and made it possible to tap relatives to provide supports,” she said. “When the public health emergency ended, however, some states stopped offering that option.”

RISP is a federally designated project of national significance that has charted the deinstitutionalization of people with IDD since the 1970s.

Today, the report informs policymakers, media, service providers, legal and other advocates, and others about how many people in the United States have IDD, where people with IDD who get publicly funded services live, and about differences across states in how many people are served. For example, the report notes that 18 states closed or downsized (to fewer than 16 people) all of their state-run institutions by 2021.

An article in the Chicago Tribune last spring shared the story of a 39-year-old Illinois man with an intellectual disability living in a state-run institution. He had been trying for years to move to a group home where he would have more personal freedom to participate in the community. But this wasn’t just one man’s story.

Using RISP data, the Tribune noted that Illinois has the second-highest number of people with IDD living in state-run institutions. Only Texas has more. Together with data from other sources, the article informed readers about the slow progress Illinois has made toward complying with a 2011 consent decree that requires it to provide opportunities for people in state-run facilities to move to community-based homes.

Also, last year, Inclusion International and Inclusion Europe consulted Larson as the international organizations developed an initiative to close institutions around the world and move people with IDD to homes in the community.

Legislative policymakers, attorneys in court cases, and service providers with technical assistance requests also frequently use RISP products and publications. Check out RISP Data Bytes here. A forthcoming update to the clear-language publication 30 Years of Community Living for Individuals with Intellectual and/or Developmental Disabilities , in partnership with the Institute for Community Inclusion at UMASS Boston and the University of Colorado, will detail work by the three projects of national significance. RISP infographics can be found here.