Quality Mall Department: Closing Institutions
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Closing Institutions
  >>Located in Store(s): Systems Change Shop

Information about notable efforts in various states to downsize and close institutions for persons with developmental disabilities, including strategies used to address different issues.

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Managed by: Barbara Brent (bbrent@nasddds.org) of National Association of State Directors of Developmental Disabilities Services

Product Categories
Books, Publications & Reports (printed and/or online) (48 Products)
Electronic Media (30 Products)
Organizations, Programs, and Projects (8 Products)
Online Forums (1 Products)
Other (2 Products)
People Who Can Help (2 Products)


Books, Publications & Reports (printed and/or online)
"Community for All" Tool Kit: Resources for Supporting Community Living
This toolkit has information for people who are working to close institutions. It contains research on deinstitutionalization, as well as advocacy strategies on how to close them.
"We can't close it yet": How discourse positions people with intellectual disabilities
A journal article that studies how people with intellectual disabilities are viewed in Manitoba, Canada.
A History and Sociology of the Willowbrook State School
This book is about the history of people who lived in the Willowbrook institution.
A Review of the Medicaid Home and Community-Based Services Program in Vermont
This report summarizes findings of a case study of Vermont's Medicaid Home and Community-Based Services program. It is available online.
Annie's Coming Out
The true story of Annie, a girl with Cerebral Palsy who lived in an Australian institution. She learns to communicate using symbols.
Are the Expectations of the Lanterman Act Being Met?: An Evaluation of the California Department of Developmental Services' Performance Contracts
This scholary paper asks how well California is keeping track of its promise to help people with developmental disabilities live more independent lives.
Away From the Public Gaze
This is an extensive document that chronicles the history of the Fairview institution in Oregon and the experiences of the residents.
Behavioral Outcomes of Deinstitutionalization for People with Intellectual and/or Developmental Disabilities: Third Decennial Review of U.S. Studies, 1977-2010 (Policy Research Brief)
This brief is about the differences in the ability to do daily living skills between people who live in the community and those who don't. It is a free download as a PDF file.
Behavioral Outcomes of Deinstitutionalization for People with Intellectual Disabilities: A Review of Studies Conducted Between 1980 and 1999
This is a Policy Research Brief by the Research and Training Center on Community Living at the University of Minnesota. It is a summary of the research studies showing changes in people's behavior after they left institutions.
Christmas in Purgatory: A Photographic Essay on Mental Retardation
This book is a classic photo essay of living conditions in institutions. It was first published in 1964 and was a foundational work in reform efforts.
Costs and Outcomes of Community Services for People with Intellectual Disabilities
The main focus of this book is on community services in the USA, but there are also contributions from the UK and Australia.
Deinsitutionalization of Persons with Developmental Disabilities: A Technical Assistance Report for Legislators
This report gave advice to the states on reducing the use of large facilities to serve people with developmental disabilities.
Deinstitutionalization: Unfinished Business
This report reviews progress in closing institutions. It also looks at what is getting in the way, and how two states are making progress.
For Special-Care Residents, New York State Policy Means Leaving Home
This news story explains the concerns of families as institutions close and their loved ones seem forced into community settings.
Getting Life
A fictional story of a young woman with cerebral palsy who lived in a nursing home. She takes the steps necessary to live independently.
Health Status, Health Care Utilization Patterns, and Health Care Outcomes of Persons with Intellectual Disabilities: A Review of the Literature (Policy Research Brief)
This Brief reviewed then current research to see how well the medical needs of people with intellectual disabilities were being met across a variety of settings.
Hear My Voice: Stories Told By Albertans With Developmental Disabilities Who Were Once Institutionalized
This book has stories told by people with developmental disabilities who lived in institutions for many years. All survived to live meaningful lives in the community.
Impact: Feature Issue on Behavior Support for Crisis Prevention and Response
This magazine has many articles about supporting people through difficult times.
Just Like Home: An Advocate’s Guide to Consumer Rights in Medicaid HCBS
This guide explains the standards and guidelines that settings must meet for home and community-based services (HCBS) reimbursement.
Living in the Freedom World: Personal Stories of Living in the Community by People Who Once Lived in Oklahoma's Institutions
A group of personal stories from people with disabilities who've left institutions to live in the community.
Medicaid Home and Community-Based Services: The First 20 Years (Policy Research Brief)
This Brief reports on the Medicaid Home and Community-Based Services waiver program during its first 20 years, from 1982 through 2002. It is available online in full text.
Money Follows the Person 2011 Annual Evaluation Report
A report on the progress and effects of the money follows the person program. This federal program gives people who need long-term services and supports more choices about where they live and receive care.
Money Follows the Person Demonstration Program: A Profile of Participants
A report about the participants in a government program that helps people on Medicaid move from institutions to live in the community. You can download it as a PDF file.
Myths and Realities: Community Capacity and “Waiting Lists”
This web article shows that there is room for people with disabilities to live in the community, and explains why it's important.
Olmstead Progress Report: Disability Advocates Assess Olmstead Implementation After Two Years
This report explains how states were using federal funds to implement the Olmstead decision three years after it was passed.
Olmstead: Reclaiming Institutionalized Lives
A state of the states report on the implementation of the Olmstead decision
Once You Enter, You Never Leave: Deinstitutionalization of Persons with Intellectual or Mental Disabilities in Croatia
This report is about institutions in Croatia. It shows how these violate the ideas of the United Nations that Croatia has agreed to.
Out of the Darkness and into the Light: Nebraska's Experience with Mental Retardation
A book about Nebraska's model for community living for persons with intellectual disabilities.
People with Intellectual Disabilities: Towards a Good Life?
This book looks at how well changes like moving to smaller homes or having individualized budgets really are helping people to have a better quality of life. Though set in the U.K., the lessons apply everywhere.
Quality Assurance for People Moving from Residential Habilitation Centers
This short document explains how the State of Washington helps people keep a high quality of life as they move from an institution to another location.
Raymond's Room: Ending the Segregation of People with Disabilities
A book that questions "the way have always done things." It then calls for a new look at how America provides services for people with disabilities.
Residential Services for Persons with Developmental Disabilities: Status and Trends (RISP)
This annual report provides information about where people with developmental disabilities live, and how Medicaid dollars are used to pay for those supports. You download it as a large PDF file or make your own shorter reports online.
Separate and Unequal: States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act
This report shows many states are not living up to the Americans with Disabilities Act that says states need to help people with disabilities live independently. This is troubling because the Act had been passed 14 years earlier.
Skallagrigg
This fictional story describes the lives of several children with disabilities who met in an institution in England. It began as a book and was later made into a movie.
Speakeasy-People with mental handicaps talk about their lives in institutions and in the community
For this book, the author interviewed people with intellectual disabilities who have lived in institutions and in the community. She tells their stories using their own words.
State Studies Find Home and Community-Based Services to Be Cost Effective
This document summarizes findings across 38 state studies about the effectiveness of home and community based services (HCBS).
State Trends and Innovations in Medicaid Long-Term Services and Supports
A short report about how states are using Medicaid funding innovations to allow people to move from institutions to community based settings.
Status of Institutional Closure Efforts in 2005 (Policy Research Brief)
This Brief talks about the issues that states face as they consider whether to increase, reduce, or close institutions. It is available in full text on the web.
The Closure of Frances Haddon Morgan Center: A Quality Assurance Report
This report is about how the state of Washington made sure people received quality services during and after an institution closed.
The Evolution of State Operated Services
A document of the history of public institutions in Minnesota. There are many pictures and stories going back to the 1800s.
The National Evaluation of the Money Follows the Person (MFP) Demonstration Grant Program
This report reviews the strategies used by a sample of six states since introduction of Money Follow People demonstration in 2007.
The Origin and Nature of Our Institutional Models
Book exploring how institutions have traditionally treated persons with intellectual disabilities.
The State Boys Rebellion
This book tells the story of the 1957 'uprising' at Fernald School in Massachusetts. It helped end the common practice of forcing people with disabilities to live in institutions.
The Willowbrook Futures Project: A Longitudinal Analysis of Person-Centered Planning
This study found that person-centered planning helped people with disabilities have better outcomes than a more traditional service approach.
The Willowbrook Wars: A decade of struggle for social justice
This book traces the history of reforms and litigation at the infamous Willowbrook State School in Staten Island, New York from 1972 to 1983.
Transforming care: A national response to Winterbourne View Hospital
This report was written when abuse was discovered in an institution in England. It says that all institutions must close.
Trends and Challenges in Publicly-Financed Care for Individuals with IDD
This report describes nine dilemmas in arranging service systems for people with disabilities. The full text can be downloaded as a PDF file.
What's Possible: 9 Stories of Changed Lives
This booklet tells the stories of people who now call the community home after living in an institution for decades.
Electronic Media (Videos, CDs, T.V., Radio, Websites, etc.)
A Little History Worth Knowing: Disability Down Through the Ages
Video on the history of disabilities that includes past abuses but ends hopefully, looking at how changing attitudes and advancing technology are helping people with disabilities enter the global economy.
An Analysis of Expenditures and Outcomes of Different Residential Settings in Minnesota
This study looks at the costs of deinstitutionalization and well-being of people with intellectual disabilities who moved from large residential facilities to community programs. It was published in an academic journal but you can download a summary here.
Balancing Incentive Program: Strengthening Medicaid Community-Based Long-Term Services and Supports
A brief report about a federal program that offers states funding to move away from institutionally-based care and toward home-and community-based services.
Beyond Forest Haven
Forest Haven was an institution for people with disabilities in Washington DC. This 18-minute documentary looks back at the history of Forest Haven's closing and the journey to build a better life in the community for some of the people who lived there.
El Peecho's Pennhurst Page
This is a website dedicated to the former residents of the Pennhurst State School in Pennsylvania. It includes a good amount of information on Pennhurst, including first-hand accounts of what went on at the institution.
Feud Over Best Setting for the Disabled (Wall Street Journal Article)
A news article from the Wall Street Journal. It is about a debate in Arkansas over the role of institutions for people with disabilities.
Fiscal Analysis of Assembly Bill 896. California's Developmental Services System Unification, Finance and Economic Issues
Independent economic analysis of California Assembly Bill 896 that proposes to close three large state-operated developmental centers (institutions) in California and transfer people from these centers to community settings.
Fred's Story
In this video, Fred Calabrese tells about what it was like to live in an institution for more than 40 years. Fred got out and also talks about having his own apartment.
Front Wards, Back Wards
This is a film about the good and bad parts of America's first institution for people with disabilities. Fernald in Massachusetts was created in 1848 and closed in 2014.
GAO Report: States’ Plans to Pursue New and Revised Options for Home- and Community-Based Services
A report from the Government Accountability Office about the four Home and Community-based Service options for Medicaid beneficiaries.
How do I feel about that?
In this online video, a self-advocate shares his feelings about community opposition to the development of small group homes.
Hurry Tomorrow
Hurry Tomorrow is a compelling documentary about the loss of human rights suffered by psychiatric patients in a state mental institution.
If I Can Help Someone Today - CD
This CD has songs sung by advocate Peter Bourne. Peter has a visual impairment and works to close institutions in Canada.
If Those Walls Could Talk: They Would Tell of the Resilience of the Human Spirit
This video documents the experiences, impressions and memories of people with developmental disabilities and their families who were associated with the former Rydalmere Hospital in Sydney NSW.
Institute on Public Policy for People with Disabilities
This agency is working to close institutions in Illinois.
Institutions: Close Them! (Film)
A film in which five people share their stories about living in an institution. It is part of work by People First of New Hampshire to close institutions.
Justice Department Moves to Intervene in Texas Case to Enforce the Supreme Court’s Olmstead Decision
In June of 2011, the US Department of Justice sued the state of Texas. The reason was the high number of people with disabilities living in state institutions.
Living Proof: The Right to Live in the Community
This 20-minute film shows people with disabilities who live in Zagreb, Croatia. They have moved out of institutions and now lead lives in the community. Subtitles in English.
National Review of Restraint Related Deaths of Children and Adults with Disabilities: The Lethal Consequences of Restraint
This report sums up what was learned from studying the cases of 61 people with disabilities who died while being restrained.
Olmstead Decision
The US Supremes Court's Olmstead decision has major implications for services for people with disabilities. Mall visitors can find out more through the links here.
On The Outside
This book tells inspiring stories about people in West Virginia who returned to the community from institutions.
Recollections of the Institution
These two DVDs explain what it was like for people with ID/DD to live in institutions. One has stories from people who have disabilities, and the other provides parent perspectives.
Robert Perske: Street-Court-Prison Worker and Advocate
This website is about the work of Robert and Martha Perske. Robert has spent many years advocating for people with disabilities caught in the criminal justice system.
Skallagrigg
This fictional story describes the lives of several children with disabilities who met in an institution in England. It began as a book and was later made into a movie.
The Civil Rights Litigation Clearinghouse (Olmstead Cases Special Collection)
This special collection of the clearinghouse provides detailed information about important cases related to the U.S. Supreme Court Olmstead v. L.C. ruling.
The Community Imperative Video
A video record of a national conference held in 2002 affirming the rights of people with developmental disabilities to live in the community. You can watch it online.
The Olmstead Decision: Implications for Medicaid
Policy brief concerning the US Supreme Court's Olmstead decision and its implications for the provision of Medicaid services. Though this brief is dated, it is still available online.
The Visionaries - "No One Left Behind"
This documentary showcases Disability Rights International's work to end abuses in institutions and support local activists to make sure that all children with disabilities grow up in families in the community.
The Willowbrook Futures Project: A Longitudinal Analysis of Person-Centered Planning
This study found that person-centered planning helped people with disabilities have better outcomes than a more traditional service approach.
Where's Molly?
This film chronicles the reunion of Jeff Daly and his sister Molly. Molly was sent to live in an institution at age 3, so they had not seen each other for 47 years. Their story explores the conditions of the institution Molly lived in.
Organizations, Programs, and Projects
Centers for Independent Living
This product is community centers that exist all around the United States, and World to assist persons with disabilities to leave institutions and live independently in the community. They are run by people with disabilities.
Common Vision
A participatory leadership program building knowledge and creating sustained leadership in the disability community.
Community Now!
This organization helps people with disabilities move out of state institutions. It is in Texas.
Deinstitutionalization Toolkit
This toolkit explains how systems can change to help people move into the community.
Institute on Public Policy for People with Disabilities
This agency is working to close institutions in Illinois.
Mainstream Category 2 Vouchers
This program aims to help people with disabilities move out of institutions to live in the community. It is a joint effort of the US Departments of Health and Human Services, and Housing and Urban Development.
Roads to Community Living
A program in Washington State to help people living in institutions return to the community.
The Center on Human Policy (UCEDD)
This is a policy, research, and advocacy organization involved in the national movement to insure the rights of people with disabilities.
Online Forums
El Peecho's Pennhurst Page
This is a website dedicated to the former residents of the Pennhurst State School in Pennsylvania. It includes a good amount of information on Pennhurst, including first-hand accounts of what went on at the institution.
Other
Michael Dillon
Michael supports people who have significant disabilities in creating at-home supports, and serves as a consultant to several states and courts.
Presidential Executive Order Implementing Olmstead Decision
President Bush's Executive Order instructing federal agencies to take steps to implement the US Supreme Court's 1999 Olmstead decision
People Who Can Help
James Conroy
We can assist with program evaluation of all kinds in the human services. We specialize in ways of measuring qualities of life, and demonstrating that they are valid and reliable.
Pam Walker
My research interests include community living, family supports, recreation, meaningful daytimes, and the social geography of disability.


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This web site is maintained by the Research and Training Center on Community Living with support from the National Association of State Directors of Developmental Disabilities Services, the Human Services Research Institute and the Administration on Intellectual and Developmental Disabilities. E-mail weste050@umn.edu.
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