Download "30 Years of Community Living for Individuals with Intellectual and/or Developmental Disabilities (1987-2017)"
On July 12, 2021, three ACL grantees released 30 Years of Community Living for Individuals with Intellectual and/or Developmental Disabilities. Featuring infographics, photos, and accessible language, as well as personal perspectives on community living and inclusion shared by people with intellectual and/or developmental disabilities (ID/DD) who served as advisors to the project, the free digital book explores the evolution of integration and inclusion of people ID/DD in American society. The book was written collaboratively by the directors of three longitudinal studies funded by ACL’s Projects of National Significance program.
A summary of data collected between 1987 and 2017, the book illustrates the progress made since the Americans with Disabilities Act was passed 31 years ago and the work yet to be done to achieve its promise. It starkly illustrates that although opportunities for community living have significantly expanded, far too many people with ID/DD are still unable to access the supports they need to live – and fully participate -- in their community. Highlights include:
- Where people live: The vast majority of people with ID/DD live in homes in the community, not in institutions. The number of people with ID/DD who receive paid support who do not live with a family member more than doubled, and most of them lived in homes shared by six or fewer people with ID/DD.
- Funding for services and supports: A huge shift was seen in Medicaid-funded supports. In 1987, 9 of 10 people who received Medicaid-funded supports lived in an institution. By 2017, 9 of 10 people who received supports through Medicaid were receiving them in the community. However, availability of paid supports still trailed the need; in 2017, fewer than one in five people with ID/DD (or 17%) 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.
About the authors
Projects of National Significance focus on the most pressing issues affecting people with developmental disabilities and their families. Through the projects, ACL supports the development of national and state policy and awards grants and contracts that enhance the independence, productivity, inclusion, and integration of people with developmental disabilities. The program funds three data collection projects, which collaborated to produce 30 Years of Community Living for Individuals with Intellectual and/or Developmental Disabilities:
- The Residential Information Systems Project (RISP) is a project of the Institute on Community Integration at University of Minnesota. It studies 1) how many people with ID/DD get paid supports, 2) the types and sizes of the places where people live, 3) how services differ for children and adults, and 4) how services change from year to year. RISP data are used for the Community Living chapter.
Contact: Sheryl Larson, PhD
- StateData.info is a project of ThinkWork! at the Institute for Community Inclusion at UMass Boston. StateData and ThinkWork! describe the employment experiences of people with ID/DD and other disabilities, describe policies and supports that lead to employment and other meaningful day activities, and tell personal stories about employment success. StateData research is used in the Employment chapter.
Contact: John Butterworth, PhD
- The State of the States in Intellectual and Developmental Disabilities project is run by the University of Colorado at the Anschutz Medical Campus. It studies how much money is spent on supports for people with ID/DD, how services are funded, and how technology changes people’s lives. State of the States data are used in the Expenditures and Technology chapters.
Contact: Shea Tanis, Phd