History Note - April 2022

History of inclusive community living is reviewed  

The notion of people with intellectual and/or developmental disabilities living inclusively in their home communities was a novel idea decades ago. Many people lived in large facilities, often far away from their homes, families, friends and familiar communities. 

That began to change in the 1980s as deinstitutionalization occurred. The book 30 Years of Community Living, released recently by the Administration for Community Living (ACL), provides an interesting overview of the past three decades of change. The digital book, which is free, explores the evolution of societal integration and inclusion of people with intellectual and developmental disabilities. 

The administration has funded three longitudinal data projects of national significance for almost 30 years. The book was written collaboratively by the directors of the studies, which are funded by ACL’s Projects of National Significance program. The projects study where people with intellectual and/or developmental disabilities live, if and where they work, and how public money is spent on supports. Reporting is done on the current status of those supports and on trends over time.  

One of the three projects is the Residential Information Systems Project (RISP), which is led by the Institute on Community Integration (ICI) at University of Minnesota. RISP is a study of how many people with intellectual and developmental disabilities get paid supports. It also focused on the types and sizes of the places where people live. How services differ for children and adults is a third focus. A fourth area scrutinized is how services change from year to year. 

Other projects are from the ICI at University of Massachusetts-Boston and the University of Colorado at the Anschutz Medical Campus.  

About 7.38 million people in the U.S. have intellectual and/or developmental disabilities. Seven in 10 people with such disabilities are children. 

People with developmental disabilities may have difficulties with tasks including speaking, learning, caring for themselves, moving around, making decisions, living independently, and making and managing money. These disabilities are found before age 22, and continue throughout life. 

 Intellectual disability also begin before age 22. People have trouble learning and solving problems. They also have difficulties with practical skills such as dressing or shopping, social skills such as making and keeping friends and keeping others from hurting them, and with skills such as reading and doing math. 

The book shows the progress made since the Americans with Disabilities Act (ADA) was passed 31 years ago and the work yet to be done to achieve its promise. But while opportunities for community living have been greatly expanded, far too many people are still unable to access the supports they need to live in and fully participate in their home communities.  

The book is written in accessible langue. it has a lot of history, and a timeline for change. it also includes many photos and personal stories. 

30 Years of Community Living outlines many trends over the past three decades. One is on where people live. The trend is for people to not live in institutions or with their families. Instead, most live in homes shared by six or fewer people. 

A major shift was seen in Medicaid-funded supports. In 1987, nine of 10 people who received Medicaid-funded supports lived in an institution. By 2017, nine of 10 people who received supports through Medicaid were receiving them in the community. 

But availability of paid supports still lagged behind the actual need. In 2017, fewer than one in five people with intellectual and developmental disabilities receive paid supports for community living. 

Employment: The number of people with ID/DD working in competitive, integrated employment grew from a few thousand to nearly 150,000, and the number of people receiving supports to work in the community quadrupled. However, those numbers still represent a small fraction of the people with ID/DD who would like to be working in the community. Although 60 percent of people with ID/DD would like to be working in a paid job, alongside people without disabilities, only 20 percent of people with ID/DD are. Similarly, only about 1 in 5 people who receives employment or day services from a state ID/DD agency received support to work in an integrated job. 

Technology: Although technology is an increasingly powerful tool for enhancing well-being and community engagement, investment in technology for people with ID/DD has remained relatively flat over the last 10 years. Few states have “technology first” policies that require technology to be considered when planning for services to support people with ID/DD, but that number is growing – in 2020, 17 states and the District of Columbia had “technology first” initiatives. 

The History Note is a monthly column produced in cooperation with the Minnesota Governor’s Council on Developmental Disabilities. Past History Notes and other disability history may be found at  www.mnddc.org