The materials reviewed in this section are intended to give the reader an overview of the historical and ideological perspectives which inform the community integration movement. For that reason, some of these materials may now seem outdated or overly broad, while others are very current. They are presented here because the complex nature of the forces encountered by people with disabilities, parents, and practitioners require a good understanding of the basis for community services and supports and a strong commitment to the principle that the community should include everyone. For more on the perspectives of people with disabilities and family members, please see the "self-advocacy," "families," and "disability studies" sections of this bibliography.
TITLE: Communication unbound: How facilitated communication is challenging traditional views of autism and ability/disability
AUTHOR: Biklen, D.
PUBLICATION INFORMATION: 1993
In 1989, Biklen spent a month in Melborne, Australia at Rosemary Crossley's DEAL Center for augmented communication carrying out a qualitative study of students with autism who used facilitated communication (FC). Returning to New York, Biklen then proceeded to publish the findings of this study and to introduce FC into his local schools. Communication unbound chronicles, through the richness of examples, the stories of what he learned in Australia and attempts to bring this knowledge back to the US. Topics covered include: toward an understanding of FC, introduction of FC here, "I'm not autistic on the typewriter," breakthroughs and the difficulties of change, validation controversies, rethinking disability and communication, and ending the ability/disability dichotomy.
TITLE: Contested words, contested science: Unraveling the facilitated communication controversy
AUTHORS: Biklen, D., & Cardinal, D.
PUBLICATION INFORMATION: 1997
Since the formal introduction of FC into the United States, considerable controversy has surrounded the use of FC for students with labels of autism. Is FC real, who has authorship over that which is communicated through typing, why were earlier studies not able to validate FC, what is communication, and is FC 'real communication?' This book carries out an in-depth consideration of the controversy that has surrounded FC. The authors look at possible reasons for which past studies continually gave non-validating results and then examine the results of new studies which show that FC is indeed communication. Specifically, they look at using portfolios to confirm authorship, factors that affect performance with FC, multiple meanings of independence, and the concept of presuming competence.
TITLE: The community imperative revisited
AUTHORS: Biklen, D., & Knoll, J.
PUBLICATION INFORMATION: 1987
In J. A. Mulick & R. F. Antonak (Eds.), Transitions in mental retardation, Vol. III: The community imperative re-examined (pp. 1-27). Norwood, NJ: Ablex.In 1979, the Center on Human Policy issued The Community Imperative Declaration, which asserts that "All people, regardless of the severity of their disabilities, are entitled to community living." This statement and an accompanying paper became a rallying point for people everywhere who believed in community living for all. This chapter "revisits" the statement and its aftermath, systematically refuting eight major arguments which oppose this position and citing the experiences of a number of formerly institutionalized people. The chapter provides a comprehensive review of the literature on this topic and highlights a number of obstacles which continue to hinder realization of the Community Imperative's goal.Ablex
355 Chestnut Street
Norwood, NJ 07648
TITLE: The family papers: A return to purgatory
AUTHORS: Blatt, B., Ozolins, A., & McNally, J.
PUBLICATION INFORMATION: 1979
This valuable resource is currently out-of-print. It should be available at any library with a solid collection in the area of special education.In 1966, Burton Blatt and Fred Kaplan, the former a respected professional in the field of mental retardation and the latter a photographer, shocked America's conscience with the publication of Christmas in purgatory, a photographic exposé of conditions in institutions for people with mental retardation. Ten years later, Blatt, this time with Andrejs Ozolins and Joe McNally, returned to these institutions to document the changes and reforms that had occurred since the earlier expose. The findings are contained in The family papers. Filled with photographs of institutions and alternative settings, this book at once documents improved conditions at institutions and captures the more subtle forms of dehumanization which occur there today. As the authors conclude, "As you will see, everything has changed during the last decade. As you will see, nothing has changed." The book presents a compelling argument in favor of community living. Policymakers, parents, and professionals new to the field will find this book especially informative.A slide show based on the book, The Family Album, is available through the Human Policy Press, P.O. Box 127, University Station, Syracuse, NY 13210.
TITLE: Evolution of a new service paradigm
AUTHOR: Bradley, V. J.
PUBLICATION INFORMATION: 1994
In V.J. Bradley, J.W. Ashbaugh, & B.C. Blaney (Eds.), Creating individual supports for people with developmental disabilities: A mandate for change at many levels (pp. 11-32). Baltimore: Paul H. Brookes Publishing Co.This chapter "addresses the theoretical variations that have precipitated change from the 1960s to the 1990s..." It begins with a section discussing the background "hallmarks of change" such as the evolution of the normalization principle and the change in paradigms from a medical model to a developmental model to a community membership model. Subsequent sections discuss the era of institutional reform, retrenchment and a realistic reappraisal. Next, the community membership paradigm is delineated. The keystones of this paradigm are discussed, that is: a commitment to community and families, human relationships, functional programming and individualization, and flexibility and individualized supports. Implications for the field are presented, including implications for service providers, for staff, and for the service system.
TITLE: Criterion of ultimate functioning and public school services for the severely handicapped student
AUTHORS: Brown, L., Nietupski, J., & Hamre-Nietupski, S.
PUBLICATION INFORMATION: 1976
In M. A. Thomas (Ed.), Hey, don't forget about me: Education's investment in the severely, profoundly, and multiply handicapped (pp. 2-15). Reston, VA: Council for Exceptional Children.
This valuable resource is currently out-of-print. It should be available at any library with a solid collection in the area of special education.The case is made in this chapter that programs for individuals with severe disabilities have been oriented toward preparing these people to function in segregated environments. The authors propose a redirection of practice in services to severely handicapped persons toward what they call the Criterion of Ultimate Functioning--"the ever changing, expanding, localized, and personalized cluster of factors that each person must possess in order to function as productively and independently as possible in socially, vocationally, and domestically integrated adult community environments." Some of the factors suggested to facilitate this orientation are 1) integration into heterogeneous community environments; 2) a system of services for persons with severe disabilities which are longitudinal, comprehensive, and coordinated; and 3) the use of instructional approaches that are specifically geared toward teaching needed skills in natural environments.
TITLE: Site visit reports
AUTHOR: Center on Human Policy
PUBLICATION INFORMATION: 1985-1998
Center on Human PolicyBeginning in 1985, Center on Human Policy staff have conducted site visits to agencies nominated as demonstrating promising practices in community integration. This series of reports includes views of agencies engaged in supporting adults to live in the community, family support, citizen advocacy, employment, integrated recreation and leisure opportunities, and other types of support of people with severe disabilities. To obtain a listing and description of each report (a number of which are annotated in other sections), write to the address above. Also note that some of these reports are listed elsewhere in the Center's web site.
Syracuse University
805 South Crouse Avenue
Syracuse, NY 13244-2280
NOTE: Paul H. Brookes Publishing Co. has published two books that contain a number of these case studies: Life in the community: Case studies of organizations supporting people with disabilities in the community (1991) and Housing, support, and community: Choices and strategies for adults with disabilities (1993).
TITLE: Normalization, social integration, and community services
AUTHORS: Flynn, R. J., & Nitsch, K. E. (Eds.)
PUBLICATION INFORMATION: 1980
Pro EDThis is an edited book that provides a comprehensive review of the principle of normalization. The book is divided into three parts. Part I, "The Normalization Principle: Systematic Statements and Clarifications," includes articles authored by Wolf Wolfensberger, Bengt Nirje, and Neils E. Bank-Mikkelsen which provide an update on the meaning of normalization and address common misconceptions of the principle. Part II, "The Normalization Principle: Implications for Legislating, Implementing, and Evaluating Community Services," contains ten separate articles which deal with legal issues (especially, the implications of the Pennhurst case), special education (a classic article on least restrictive educational environments written by Lou Brown and others), early childhood education, the research on community residential settings, vocational services, regional planning for "communitization," a "supermarket of services" for elderly adults, and program evaluation based on normalization. Part III of the book contains a conclusion by the editors and a comprehensive bibliography of normalization references. Policymakers, planners, and administrators will find this book most useful.
5341 Industrial Oak Boulevard
Austin, TX 78735
TITLE: Supported community life and mediating structures: Joining theory to practice in disability policy reform
AUTHORS: Hibbard, M., Ferguson, P., Leined, J., & Schaff, S.
PUBLICATION INFORMATION: 1989
In P. Ferguson & D. Olson (Eds.), Supported community life: Community policy to practice in disability research. Portland: Specialized Training Program, University of Oregon.This excellent essay explores basic contradictions in traditional social welfare policy, such as its basis in a belief in individual rights and entitlements as opposed to the large-scale institutions and systems that are developed to carry out social policy, and the loss of community and structures that might mediate the influence of "megastructures" on individual lives. It goes on to point out that while these contradictions have also shaped disability policy, the past few years have seen a new concept in disability policy, that of "supported community life," that can be explicated so as to be seen as a mediating structure. The authors point out that "What is new in the notion of Supported Community Life is the guiding commitment to participation and affiliation rather than control and remediation." The essay goes on to discuss services relevant to several life domains that are now framed as supports (supported employment, supported living, etc.) rather than just as programs or services. Finally, it illustrates the ideas being proposed by focusing in on family support services that illustrate the concept of support and that place control with the family, examining the supportive qualities of several programs. This chapter is worth reading for its excellent syntheses of trends in disability policy.Specialized Training Program
University of Oregon
College of Education
Eugene, OR 97403
TITLE: Changing patterns in residential services for the mentally retarded
AUTHORS: Kugel, R. B., & Wolfensberger, W. (Eds.)
PUBLICATION INFORMATION: 1979
President's Committee on Mental Retardation
U.S. Department of Health and Human Services
Office of Human Development Services
Washington, DC 20201
Originally published in 1969, it now includes some new and some revised chapters.
This report, published by the President's Committee on Mental Retardation, is perhaps the single most influential document in the change from segregation and isolation toward normalization and community integration of people with disabilities. The report outlines the status of residential facilities in the late 1960s and describes them "...as a disgrace to the nation" (p. 1), and delineates alternative ways of providing services. The contributors to this volume include several outstanding U.S. leaders in the field of mental retardation such as Burton Blatt, Gunnar Dybwad, Robert Kugel, Seymour Sarason, and Wolf Wolfensberger, as well as a number of European leaders, among them N.E. Bank-Mikkelsen (Denmark), Karl Grunewald (Sweden), Bengt Nirje (Sweden), David Norris (England), and Jack Tizard (England).
The report represented more than just another condemnation of the status of institutional programs in the U.S. in the 1960s. It also provided a thorough examination of the present service system, outlined new ways of providing services, and courses for action. Maybe most importantly, it was this report that brought the normalization principle to the nation's attention in a chapter written by Bengt Nirje where he outlines the theoretical construct of normalization which already at that time underlined much of the Scandinavian legal and service structure in mental retardation. The editors of the volume note that they "...view the normalization principle as perhaps the single most important concept that has emerged in this compendium" (p. 10). Although many of the ideas presented in this report are outdated by now, this historical and classic document was the turning point in the history of services for people with disabilities in the U.S.
TITLE: An overview of the community living concept
AUTHORS: Lakin, K. C., Hayden, M. F., & Abery, B. H.
PUBLICATION INFORMATION: 1994
In M. F. Hayden & B. H. Abery (Eds.), Challenges for a service system in transition: Ensuring quality community experiences for persons with developmental disabilities (p. 3-22). Baltimore: Paul H. Brookes Publishing Co.This chapter presents a framework developed by the Rehabilitation Research and Training Center on Residential Services and Community Living (a collaborative program involving the Institute on Community Integration (UAP) at the University of Minnesota, the Center on Human Policy at Syracuse University, and the University Affiliated Program on Developmental Disabilities at the University of Illinois at Chicago) to describe the meaning of community living. Within the RRTC, community living is viewed as the "effort to improve one's quality of life within collectives called communities." This chapter identifies and discusses six aspects of quality of life: presence in the community; health, safety, and basic comfort; opportunity for personal growth and development; social relationships; valued community participation; and personal self-determination.
TITLE: The careless society: Community and its counterfeits
AUTHOR: McKnight, J.
PUBLICATION INFORMATION: 1995
Basic BooksThis book is a compilation of the author's writings between 1974 and 1994. The chapters document the effect of the service system invasion on various aspects of society, attempting to describe both the futility of the counterfeit and the nature of the authentic care it replaced. The discussions point out that our problem is not ineffective service-producing institutions. In fact, our institutions are too powerful, authoritative, and strong. Our problem is weak communities, made ever more impotent by our strong service systems. Sections of the book cover various topics including: professionalism, medicine, human service systems, the criminal justice system, community, and Christian service.
10 East 53rd Street
New York, NY 10022
TITLE: Perspectives on disability
AUTHOR: Nagler, M. (Ed.)
PUBLICATION INFORMATION: 1990
Health Markets ResearchIn the introduction, the editor states, "The purpose of this text is to identify the significant and paramount concerns of the disabled community and to illuminate the obstacles which are often imposed on this minority. Further, it is the intention of this book to remedy the lack of comprehensive information about the disabled and to present some of the conflicting perspectives which surround many disabled issues." The book is divided into ten sections with chapters presenting the perspectives of people with and without disabilities. The sections include: what it means to be disabled, societal attitudes about disability, social encounters, family experiences, sexuality and disability, educational opportunities and barriers, employment and disabled workers, legal issues, medical concerns, and what it means to be different: perspectives of the disabled. An appendix contains a bibliography of American and Canadian disability organizations.
851 Moana Court
Palo Alto, CA 94306
TITLE: What can we count on to make and keep people safe? Perspectives on creating effective safeguards for people with developmental disabilities
AUTHORS: O'Brien, J., O'Brien, C. L., & Schwartz, D. B. (Eds.)
PUBLICATION INFORMATION: 1990
Lithonia, GA: Responsive Systems Associates. (Available through the Center on Human Policy)
This excellent and readable monograph is a report on a discussion between participants in a 1989 annual retreat of the Pennsylvania Developmental Disabilities Planning Council. It includes summaries of parts of the discussion and selections from background papers used by participants, and deals with questions that encompass, but are much broader than, quality assurance. The editors see the question in the title as one that "frames an important perspective on the continuing work of building communities that offer people with developmental disabilities full and dignified lives." The paper recognizes the vulnerability of people who need long-term assistance to realize their citizenship and community membership, and deals with the insufficiency of currently favored mechanisms for ensuring safety. The discussion looks at various types of advocacy, at lifesharing and other personal commitments, and at support for what families, friends, and service workers do. It also discusses strategies and options for action to increase people's safety.
TITLE: The national reform agenda and people with mental retardation: Putting
people first
AUTHOR: President's Committee on Mental Retardation
PUBLICATION INFORMATION: 1994
U.S. Dept. of Health and Human ServicesThis monograph contains the proceedings of the 1994 meeting of the President's Committee on Mental Retardation. Included are perspectives of self-advocates, parents, administrators, and others. Additional topics covered include legislative concerns, school to work, older citizens with developmental disabilities, and cultural diversity and citizens with disabilities. The monograph also contains reports and recommendations from PCMR workgroups on: health care reform, welfare reform, long-term care reform, housing reform, education reform, and employment/financing reform.
Wilbur J. Cohen Building, Room 5325
330 Independence Ave., S.W.
Washington, DC 20201
TITLE: The Willowbrook wars: A decade of struggle for social justice
AUTHORS: Rothman, D. J., & Rothman, S. M.
PUBLICATION INFORMATION: 1984
Though this book is out-of-print, it should be available at university and municipal libraries or through interlibrary loan services.This book traces the history of reforms and litigation at the infamous Willowbrook State School in Staten Island, New York from 1972 to 1983. While the book focuses on the specific experience at Willowbrook, it has general relevance to the issues of institutional reform, the impact of courts on service systems, parent involvement, deinstitutionalization, and community-based services for people with severe disabilities.
Practically everyone interested in people with severe developmental disabilities will find The Willowbrook wars interesting and useful. Parents will identify with the heart-wrenching experiences and dilemmas of parents of people at Willowbrook. Policy makers and planners will find important lessons about the complexity of reform, systems change, and developing community services. Attorneys and advocates will gain additional insight into the impact of their activities. Service providers will learn about approaches for gaining community acceptance, designing humane and effective programs, planning strategies, the importance of independent monitoring, and current controversies over issues like the size of community living arrangements and community fears of "Hepatitis B carriers." Written in clear language and an engaging style, The Willowbrook wars is "must" reading for people interested in the community integration movement.
TITLE: Crisis in the community
AUTHOR: Smull, M. W.
PUBLICATION INFORMATION: 1989
National Association of State Directors ofIn this paper, Smull provides strong evidence that community services are in crisis--that understaffing and underfinancing, combined with rigid and inefficient models of service, are having an increasingly adverse effect on quality of care. He proposes a reconceptualization of services, a move from a "program paradigm" to a "support paradigm," as a way of bringing resolution to the crisis. He proposes changes in the way we think about people and services, changes in how our programs are staffed and organized, and changes in funding and regulation.
Developmental Disabilities Services, Inc. (NASDDDS)
113 Oronoco Street
Alexandria, Virginia 22314
The support paradigm, Smull argues, sees people with developmental disabilities as having choices of all sorts, and as getting the support they need to realize their choices. It sees people as participants in community life, with support, taking advantage of opportunities rather than doing what they are told. The support paradigm will mean a "messier" service system, one that encourages the use of the resources of the person, the family, and the community while it uses staff in radically different patterns to carry out the wishes of the people they work for. This paper is worth sending for--Smull expertly delineates the problems with the current community service system and proposes real ways of thinking about solutions to the crisis.
TITLE: Community integration for people with severe disabilities
AUTHORS: Taylor, S. J., Biklen, D., & Knoll, J. (Eds.)
PUBLICATION INFORMATION: 1987
This volume begins with a set of principles for community integration. The remainder of the book is divided into three parts. Part I, entitled "Policy, Principles, and Practices," contains three chapters that address broad issues related to community integration, including prejudice and problems with the continuum. Part II, entitled "Leadership," offers different perspectives on designing and operating services for people with developmental disabilities. These authors argue that it is leadership and commitment, not bureaucratic or technical expertise, that make programs effective and responsive. Part III, "With the People," contains four chapters that look at different slices of community life. The concluding chapter reflects on key themes introduced in the book, presents some lessons learned, and looks at future issues in community integration.
TITLE: The disabled in America: History, policy and trends
AUTHORS: Taylor, S. J., & Searl, S. J., Jr.
PUBLICATION INFORMATION: 1987
In P. Knoblock (Ed.), Understanding exceptional children and youth (pp. 5-64). Boston: Little, Brown.This chapter provides a detailed review of the history and trends in disability policy in the U.S. The authors present an extensive discussion on the history of institutions, including origins, as well as the era of institutional expansion and accompanying trends (including eugenics, sterilization, restrictive immigration). They also describe the emergence of special education in the public schools. In a section entitled, "A Time of Change," the authors describe developments in the 1950s and 1960s, including the parent/consumer movement, exposes, and litigation. There is extensive discussion on major legal cases and the federal response, including the ICF/MR program, Section 504 of the Rehabilitation Act, and P.L. 94-142. The next section describes serious challenges, that occurred in the late 1970s and 1980s, to progress that had been made, with backlash and debate among parents, professionals, politicians, and members of the general public. The final section raises current and future issues for the 1980s and beyond.Little, Brown
1271 Avenue of the Americas
New York, NY 10020
TITLE: Inventing the feeble mind: A history of mental retardation in the United
States
AUTHOR: Trent, J. W., Jr.
PUBLICATION INFORMATION: 1994
University of California PressIn this book, Trent traces the history of mental retardation in the U.S. from the early 1800s onward. He uses public documents, private letters, investigative reports, and rare photographs to explore our changing perceptions of mental retardation. He contends that the economic vulnerability of people labeled mentally retarded (and their families), more than the claims made for their intellectual or social limitations, has determined their institutional treatment. At present, he sees reasons for both hope and concern. On the hopeful side, far fewer people live in the back wards or large state institutions; increasing numbers of people with disabilities go to school, live, and work in their communities. He is concerned, however, by the fact that, in the community, some people are still very isolated and segregated. He concludes: "As they did in the 1840s, mentally retarded people who have money, supportive relatives, and understanding neighbors and employers do well in American communities. As they did in the 1840s, mentally retarded people who do not have those things, do not. For some, the community has become the beloved community; for others, the lonely crowd."
2120 Berkeley Way
Berkeley, CA 94720
TITLE: Ideological, political, and legal principles in the community-living movement
AUTHOR: Turnbull, H. R.
PUBLICATION INFORMATION: 1988
In M. P. Janicki, M. W. Krause, & M. M. Seltzer (Eds.), Community residences for persons with developmental disabilities. Baltimore: Paul H. Brookes.This chapter, written by a father of a young man with severe disabilities, provides a historical context and analysis of the six principles that have contributed to the development of the community living movement. Offshoots of the original principles of normalization, egalitarianism, and equal protection are 1) a new version of parens patriae, which holds that paternalism and altruism are best expressed by moving policy away from institutional placements; 2) anti-institutionalism, which seeks to abolish institutional placement; and 3) rebalanced power relationships between professionals and parents, on one hand, and people with disabilities on the other.
The author contends that the offshoot principles, though well-intended, have been misinterpreted in ways that may actually have contributed to the reversal of the original intention to assist people with disabilities. It is suggested that the challenge for the future lies in aggressive advocacy to ensure that improvements in habilitation, integration, interpersonal relationships and client choice become realities.
TITLE: Images of possibility
AUTHOR: Wertheimer, A.
PUBLICATION INFORMATION: 1986
Values in Action (formally CampaignThis report, published in Great Britain, poses themes around the issues we all grapple with related to the future for people with developmental disabilities. It asks, very simply, where we are we going and how we will get there. It systematically presents the issues inherent in the development of "people-oriented" services and describes options that presently exist in the U.S. and Canada. The author discusses lessons that people in Great Britain might draw from the options that are given. The report provides a short yet concise view into relevant topics and questions that we face today, challenging the assumption that people with developmental disabilities can only live with the constant support of special services.
for the Mentally Handicapped)
Oxford House
Derbyshire
London, England E2 6HG
TITLE: The origin and nature of our institutional models
AUTHOR: Wolfensberger, W.
PUBLICATION INFORMATION: 1975
Human Policy PressA chronicle of the attitudes, hopes and policies that led to the creation of institutions for people with mental retardation, this book explores common perceptions of people with mental retardation, such as pitiable, sick, menacing, innocent, angelic and, only rarely, as developing persons. Too often these attitudes implied a social response that gave rise to massive and inhumane institutions, always isolated from nearby communities. Through historical documents and an original photo essay, we begin to see the nature of institutional life.
P.O. Box 127
University Station
Syracuse, NY 13210
The text bears relevance not only for its critique of institutions, but also for its explanations of ideologies and assumptions that underlie them. It is an essential manual for all who would promote deinstitutionalization and the principle of normalization in human services, in local communities, neighborhoods, and work places.
TITLE: The principle of normalization in human services
AUTHOR: Wolfensberger, W.
PUBLICATION INFORMATION: 1972
The G. Allan Roeher InstituteAs one of the most significant publications in the history of human services this book remains necessary reading for anyone involved in the provision of services. The first section delineates the conceptual and historical roots of our society's traditional approach to providing services to people with mental retardation. The principle of normalization is defined and proposed as an alternative service ideology which can avoid the pitfalls of the dehumanizing practices of the past. Some of the major implications of this principle are briefly explored. In the second section the implications of the principle of normalization for a wide range of concerns, from architecture to sex, are explored. The final section explores normalization as an impetus for generic services, citizen advocacy, monitoring of services, and direct financial support for handicapped persons.
Kinsmen Building, York University
4700 Keele Street
Downsview, ON M3J 1P3
CANADA
TITLE: Cultivating thinking hearts: Letters from the Lifesharing Safeguards Project
AUTHORS: Zipperlen, H., & O'Brien, J.
PUBLICATION INFORMATION: 1994
Kimberton, PA: The Lifesharing Safeguards Project, Camphill Village Kimberton Hills. (Available from the Center on Human Policy)This paper is an exploration of the rich mix of concepts that arise from and apply to the creation of effective safeguards for lifesharing households (where people with and without disabilities choose life together). It includes essays and letters from the different perspectives of people involved in these situations.