Institutions and deinstitutionalization


Valuing Lives: Wolf Wolfensberger and the Principle of Normalization (2016)

A film documenting the social paradigm shift triggered by Wolf Wolfensberger, a professor and change agent who, in the early 1970s, popularized and expanded the principle of normalization of people with disabilities into a framework for community inclusion. People are often judged according to how they conform to commonly-held beliefs of what is normal - normal appearance, behavior, ability. And those deemed "abnormal" can be considered undeserving of common respect, dignity, and even basic rights. For many with intellectual and developmental disabilities, this has meant segregation, isolation, and exclusion, with little or no opportunity to access the good things in life. Through archival images and footage, and dozens of interviews, *Valuing Lives* explores the principle of normalization, an idea originating in Scandinavia that challenged fundamental assumptions about people with intellectual disabilities, and the iconoclastic professor whose writings and intense workshops trained thousands of human services professionals in the theory and practice of this idea. This brought about a sea change in thinking at a time when it was considered normal to warehouse nearly 200,000 Americans with intellectual disabilities in large institutions. Wolfensberger helped change the conversation from institutional reform to rethinking society's assumptions of disability and the role of human services. There are still institutions for people with intellectual disabilities, and some voices are calling for new, segregated communities where, it is believed, they will be safer "with their own kind." It is time for a new generation of leaders to rediscover the principle of normalization. (Publication Date: April 05, 2016)

Staff: Jerry W Smith

Collaborators: Institute on Disabilities, Temple University [Philadelphia, PA]

In-Home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and Trends through 2013 (2016)

A report describing the status of, and trends in, long-term supports and services for people with intellectual or developmental disabilities in the U.S. on June 30, 2013. It is based on an annual nationwide survey of directors of state intellectual and developmental disability agencies and large state residential facilities conducted by the National Residential Information Systems Project (RISP), now in its 30th year at the Research and Training Center on Community Living. The report presents data on individualized and congregate settings, utilization and expenditures for Medicaid's Home and Community-Based Waiver (HCBS) and Medicaid's Intermediate Care Facilities for Individuals with Intellectual Disabilities program, national longitudinal trends in the utilization of and expenditures for long-term services and supports, and services and supports provided in state-operated facilities serving 16 or more people with intellectual and developmental disabilities. The RISP data are available in several formats. The annual reports can be downloaded in [PDF format]( The online version of the latest report contains short reports that highlight specific findings from the overall report; they are available online in an [interactive, data visualization format]( that allows users to quickly access state data and presents comparisons between states in a visual format. (Publication Date: March 08, 2016)

Staff: Libby J Hallas-Muchow, Amy S Hewitt, Sheryl A Larson, Sandra L Pettingell

Of the Community: Eight Stories of Community Living, Participation, and Inclusion (2015)

A film telling the stories of eight individuals with disabilities who have vibrant lives in which they live and participate in their communities in the ways they choose. Their stories illustrate the power of respect, imagination, flexibility, high expectations, and commitment to providing truly individualized, person-centered supports. Those have been found to be the keys to supporting people with intellectual and developmental disabilities to be truly *in* and *of* their communities. Their stories may be personal, but they reflect decades of social progress and ongoing challenges. Forty years ago, large institutions that warehoused thousands of people with disabilities were common. Today, most people with intellectual and developmental disabilities in the U.S. live in their communities with their families, in group homes, or in houses and apartments with needed supports. However, while many live *in* their communities, they are not *of* their communities. This is, in part, because of institutional mindsets that are present in many community group homes and other services in the U.S. In addition, there are efforts resurfacing to build new segregated institutions in spite of decades of research showing that people with intellectual and developmental disabilities have happier, healthier, and more productive lives when they live in smaller community homes with individualized supports and services. Today, people with disabilities expect to live where and with whom they choose, work in real jobs with real wages, be connected with family and friends in deep personal relationships, practice faith if and as they choose, grow through lifelong learning, explore personal interests, experience physical and emotional well-being, have choices, take risks, and accept the responsibilities of citizenship. (Publication Date: October 01, 2015)

Staff: Jerry W Smith

Services for People with Intellectual and/or Developmental Disabilities in the U.S. Territories (May 2015)

A report representing an expansion of the data collection activities mandated by a 2012 Administration of Intellectual and Developmental Disabilities (AIDD) Funding Opportunity Announcement (FOA). Prior to 2012, the AIDD funded data projects, Access to Integrated Employment, Family and Individual Information Systems project (FISP), Residential Information Systems Project (RISP) and the State of the States in Developmental Disabilities only collected data from the 50 states and the District of Columbia. The 2012 FOA requested that three of the AIDD data projects work together to include the five U.S. Territories (American Samoa and the Commonwealth of the Northern Marianas Islands, Guam, Puerto Rico and the Virgin Islands) in their data collection and analysis efforts. This summary represents the first step to describe the services for people with intellectual and developmental disabilities and their families in the territories. While the information may have limitations in the comparability to the rest of the nation, AIDD believes that it is important to begin data collection, tracking and analysis to increase opportunities to improve self-determination, independence, productivity, integration and inclusion of people with IDD into their communities in the U.S. Territories. (Publication Date: May 01, 2015)

Collaborators: Institute for Community Inclusion, University of Massachusetts Boston, Research and Training Center on Community Living, State of the States in Developmental Disabilities

Feature Issue on the ADA and People with Intellectual, Developmental, and Other Disabilities (Winter 2015)

A newsletter issue marking the 25th anniversary of the Americans with Disabilities Act (ADA). In this *Impact* are articles by individuals with disabilities, families, advocates, service providers, researchers, and others talking about how the ADA has made a difference in their lives, the lives of their loved ones, and in our nation. At the same time, this *Impact* also focuses on ways in which the ADA hasn't fully addressed a number of the barriers faced by people with intellectual and developmental disabilities as they seek equal opportunity and inclusion in their communities. By sharing this range of perspectives, the issue encourages readers to both pause to celebrate the anniversary of the ADA as a turning point in our nation's journey, and continue traveling toward that horizon of full inclusion we have yet to reach. Complementing the *Impact* are over 40 short video clips posted on the Self-Advocacy Online Web site [(]( of the Research and Training Center on Community Living in which people with disabilities talk about the importance and meaning of the ADA for them. (Publication Date: March 26, 2015)

Staff: Vicki D Gaylord, Amy S Hewitt, Clifford L Poetz

Feature Issue on Stories of Advocacy, Stories of Change from People with Disabilities, Their Families, and Allies (1988-2013) (2014)

A newsletter issue featuring then-and-now personal stories from individuals with disabilities, their families, and allies that provide a snapshot of how the disability rights movement has touched individual lives over the past 25 years. This 25th anniversary issue of *Impact* brings together personal stories published in its pages between 1988-2010, and pairs them with new stories from those same individuals and families that bring readers up-to-date on their lives today. Through these stories, plus an interview with the Institute's founding director Bob Bruininks, this *Impact* recognizes the tenacity, courage, and vision of those working to bring about progress toward full citizenship and community inclusion for people with disabilities in the U.S. (Publication Date: May 09, 2014)

Staff: Vicki D Gaylord

Behavioral Outcomes of Deinstitutionalization for People with Intellectual and/or Developmental Disabilities - Third Decennial Review of U.S. Studies, 1977-2010 (April 2011)

A brief reviewing U.S. studies that have measured behavioral outcomes associated with the movement of people with intellectual and/or developmental disabilities from institutions to community residential settings. This is the third in a series of such reviews, and it is cumulative; it includes the studies contained in the earlier reviews published in 1989 and 2001. (Publication Date: April 01, 2011)

Staff: Sheryl A Larson

We Have Choices (2010)

An award-winning documentary profiling individuals with developmental disabilities across New York state who have used individualized supports in taking greater control of their lives. Traditionally, funding for people with disabilities has gone directly to agencies that provide support services. Now, individuals have the opportunity to control their budgets and choose the services they want and need. In New York state, supports are available to help people make the move from living in large group homes to living in their own homes with one or two housemates. *We Have Choices* includes profiles of eight people who have made the move to their own homes, as well as discussions with service providers and Direct Support staff. Produced by the Institute's RTC Media in collaboration with the Self-Advocacy Association of New York State (SANYS). Length: 29 minutes. CC. Can be viewed online at []( Information about ordering the DVD, which is being distributed by SANYS, is available on the Web site or by calling them at (518) 382-1454. (Publication Date: January 01, 2010)

Staff: Jerry W Smith

Collaborators: Self Advocacy Association of New York State

Status of Institutional Closure Efforts in 2005 (September 2005)

A brief examining and summarizing the research and policy issues that state policymakers may face as they consider whether to increase, reduce, or close institutions in their own states. (Publication Date: September 01, 2005)

Staff: Pamela M Walker, Sheryl A Larson

Quality Mall (2004 - Present)

An interactive database providing an online clearinghouse of over 3,500 resources from around the country related to person-centered services and supports for persons with intellectual and developmental disabilities. For use by individuals with disabilities, families, advocates, government officials, and service providers, it covers a wide variety of topical areas related to community participation and inclusion, and quality of life. Quality Mall is managed by the Institute's Research and Training Center on Community Living. (Publication Date: January 01, 2004)

Staff: Claire Cunningham, Angela N Amado, Julie E Kramme, John G Smith

Health Status, Health Care Utilization Patterns, and Health Care Outcomes of Persons with Intellectual Disabilities - A Review of the Literature (September 2002)

A brief reviewing the current literature in the area of health care needs of people with intellectual and other developmental disabilities and allied medical conditions, looking at the degree to which such individuals are or could be receiving medical care in the community. It provides a summary of research relevant to improving the service delivery system by addressing barriers to community medical care and services, determining what services are needed, and developing strategies and assurances for provision of quality medical care. (Publication Date: September 01, 2002)

Staff: Vicki D Gaylord

Behavioral Outcomes of Deinstitutionalization for People with Intellectual Disabilities - A Review of Studies Conducted Between 1980 and 1999 (October 1999)

A brief reporting the results from a review of 38 published studies that measured behavioral outcomes associated with the movement of people with mental retardation from public institutions to community residential settings. (Publication Date: October 01, 1999)

Staff: Vicki D Gaylord, Sheryl A Larson