"Community for All" Tool Kit Resources for Supporting Community Living (PDF)
2004 • 405 Pages • 14.78 MB • English
Posted April 14, 2020 • Submitted by karelle.howell
Summary of "Community for All" Tool Kit Resources for Supporting Community Living
"Community for All" Tool Kit Resources for Supporting Community Living Version 1.1 August 2004 Distributed by: Human Policy Press http://thechp.syr.edu/HumanPolicyPress/
This tool kit is the product of collaboration between the following organizations: • American Association on Mental Retardation (AAMR) - http://www.aamr.org • The Arc of the United States - http://www.thearc.org/ • The Center on Human Policy - http://thechp.syr.edu • The Council on Quality and Leadership - http://www.thecouncil.org • National Association of Councils on Developmental Disabilities (NACDD) - http://www.nacdd.org/ • The University of Minnesota's Research and Training Center on Community Living - http://rtc.umn.edu/ • TASH - http://www.tash.org Acknowledgements/Contributors: Doreen Croser We would also like to thank the The Arc's Steven M. Eidelman Community Imperative Task Force for their Steve Gold support: Judith Gran Richard Garnett, Chair Phyllis Guinivan Janet Albert-Herman Charlie Lakin Gail Ford Liz Obermayer Sam Givan Bonnie Shoultz Tony Paulaski Sue Swenson Cliff Poetz Steve Taylor Ed Worff Pam Walker Liz Wuest Nancy Weiss Rachael Zubal-Ruggieri And thanks to the many other people who made contributions to this Tool Kit. The preparation of this tool kit was supported in part by the National Resource Center on Supported Living and Choice, Center on Human Policy, School of Education, Syracuse University, through the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133A990001, and through a subcontract with the Research and Training Center on Community Living, University of Minnesota, supported by the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133B031116. Members of the Center are encouraged to express their opinions; however, these do not necessarily represent the official position and NIDRR and no endorsement should be inferred.
"Community for All" Tool Kit Resources for Supporting Community Living Table of Contents I. Introduction a. Why this Tool Kit? b. How to use this Tool Kit c. Shared Statement of Principles d. What is an Institution? e. What is the Community? f. Planning for Quality Community Supports for Moving Into the Community II. People and Trends (Demographic Issues) a. Who are in the Institutions Today? b. All People can be Supported in the Community c. Trends in Institution Closure d. Trends in Deinstitutionalization I. Issues a. What's Wrong with Institutions? b. Cost/Economic Issues c. Quality of Life Outcomes in the Community d. Choice e. Safeguards f. Family Issues IV. Strategies a. State Strategies b. Strategies for Advocates c. Working with the Media d. Position Statements e. The Olmstead Decision V. Personal Stories a. Personal Stories Collected in Anaheim, CA, May 2004 b. Stolen Lives Campaign Stories – May 2003, "Seeking Ways Out Together" (S.W.O.T.) Team, Titusville, New Jersey c. Liz's Story VI. Resources a. Packets Prepared by Groups Advocating For Institution Closure b. Web Sites c. Bibliography VI. Indexes a. Author Index b. Topical Index
I. Introduction a. Why this Tool Kit? b. How to use this Tool Kit c. Shared Statement of Principles d. What is an Institution? e. What is the Community? f. Planning for Quality Community Supports for Moving Into the Community
WHY THIS TOOL KIT? This tool kit was developed at the request of volunteers, advocates, self- advocates, and professionals concerned that the remarkable progress made towards the inclusion of people with cognitive, intellectual and developmental disabilities (our constituents) into the fabric and mainstream of community life in America was at risk. In some places in the United States there are those who would not only continue to deny people currently in public and private institutions freedom and opportunity through continued institutionalization but who also want to expand the role of institutions in the lives of our constituents. The organizations contributing to this tool kit find that unacceptable, given all we know about how to effectively support all people, regardless of their disability, in the community. To fight the disinformation so common among those who favor continued segregation, this tool kit provides the philosophy, policy and research rationale that supports community supports and services for all people with disabilities, in the context of their families, their communities and their country. You are free to copy or modify any of the information in this tool kit for your use. If it is photocopied or reproduced from a journal or magazine, you need to get permission to copy it from the journal or magazine publisher. The published articles, book chapters and monographs should be cited as such with respect to the authors and to copyright laws. "Community for All' Tool Kit ● 2004 ● WHY THIS TOOL KIT ● Page 1
HOW TO USE THIS TOOL KIT This tool kit provides: • General information to strengthen real community inclusion. • Background information for advocates involved in campaigns to close institutions. • General information on community services, and resources for finding out more. • Material to counter arguments commonly used by pro-institution advocates. • Sample position papers, letters to the editor, op-ed pieces, and other materials that can be adapted for your own use. • Ideas for organizing and advocacy. • Information about policy and governmental action, and strategies that states can use in closing institutions. The tool kit covers many more topics than are listed in the table of contents. These topics can be located by looking through the index. For example, workforce issues are covered in the section called "State Strategies" and the index makes this clear. "Community for All" Tool Kit ● 2004 ● HOW TO USE THIS TOOL KIT ● Page 1
SHARED STATEMENT OF PRINCIPLES We, the undersigned, are committed to assuring that people with disabilities have the supports needed to design and achieve lives of quality and meaning. Such lives are characterized by opportunity, inclusion, and participation. Supports for people with disabilities should be provided in a manner that recognizes people's inherent competence; reflects the personal preferences of each individual; conveys that the person receiving services is a valued, respected community participant; and assists individuals to achieve self-determined lives of mastery, satisfaction, and meaning. Such supports can only be provided in community settings. We therefore refute all arguments for institutionalizing anyone on the basis of disability. All people have fundamental moral and constitutional rights. These rights must not be abrogated because a person has a developmental, psychiatric, or physical disability. People with significant behavioral issues and those with significant health concerns can be provided quality care and lead quality lives in the community. All relevant research supports the fact that community settings result in improved quality of life in areas such as: opportunities for integration and social participation, participation in employment, opportunities for choice-making and self-determination, quality and duration of services received, contact with friends and relatives, adaptive behavior, and other indicators of quality of life. The most recent research (Gardner, 2003) establishes the fact that there is no trade-off of health and wellness, freedom from abuse, or safety when community affiliation, choice, and self-determination are increased. Therefore, in fulfillment of fundamental human rights and in securing optimal opportunities, we the undersigned support the continued trends toward building community capacity, institutional downsizing, and the elimination of institutional care for people with developmental disabilities (based on the Center on Human Policy's The Community Imperative). List of Participating Organizations: • American Association on Mental Retardation (AAMR) - http://www.aamr.org • The Arc of the United States - http://www.thearc.org/ • The Center on Human Policy - http://thechp.syr.edu • The Council on Quality and Leadership - http://www.thecouncil.org • National Association of Councils on Developmental Disabilities (NACDD) - http://www.nacdd.org/ • The University of Minnesota's Research and Training Center on Community Living - http://rtc.umn.edu/ • TASH - http://www.tash.org "Community for All' Tool Kit ● 2004 ● SHARED STATEMENT OF PRINCIPLES ● Page 1
RESOURCES: Center on Human Policy, Syracuse University. (1979). The Community Imperative: A refutation of all arguments in support of institutionalizing anybody because of mental retardation. Syracuse, NY: Author. Available: http://thechp.syr.edu/community_imperative.html Gardner, J. F. (2003, Summer/Fall). Quality and accountability for 7 cents a day. Capstone, 20(2), 1, 3. Towson, MD: The Council for Quality and Leadership. Available: http://www.thecouncil.org/council/about/Capstones/summer03.pdf "Community for All' Tool Kit ● 2004 ● SHARED STATEMENT OF PRINCIPLES ● Page 2
WHAT IS AN INSTITUTION? Issue There are different definitions of an "institution." Some focus on services, some on size, while others focus on other characteristics of a setting such as control. Based on these varying definitions, it is clear that there are two major tasks related to institutions. One is to close the large public and private institutions. The second is to transform the community services system in order to eliminate mini-institutions within the community. Definitions One of the ways institutions have been defined is by the purpose or services that are supposed to be provided. For example, an institution has been defined in the Social Security Act (Section 1905(d)) as a place that "(a) Is primarily for the diagnosis, treatment, or rehabilitation for people with mental retardation; and (b) Provides, in a protected residential setting, ongoing evaluation, planning, 24-hour supervision, coordination, and integration for health or rehabilitative services to help individuals function at their greatest ability." This definition encompasses ICF/MRs of four or more beds if "active treatment" is provided. Another way that institutions have been defined is based on numbers of people in a setting. These definitions are commonly used for counting and tracking the numbers of people in institutions over time. For example, the definition used by Braddock (2002) includes public and private facilities for 16 or more individuals. This includes publicly and privately operated institutions, training centers, state schools, and designated MR/DD units in state psychiatric hospitals. Other definitions are based on various characteristics of the setting, and not just size. An example is Erving Goffman's definition: "A total institution may be defined as a place of residence and work where a large number of like-situated individuals, cut off from the wider society for an appreciable period of time, together lead an enclosed, formally administered round of life" (Goffman, p. xviii). Finally, there are definitions which do not include size as a factor and focus entirely on other characteristics of the setting. One example is the definition of Self Advocates Becoming Empowered: "An institution is any facility or program where people do not have control over their lives. A facility or program can mean a private or public institution, nursing home, group home, foster care home, day treatment program, or sheltered workshop." Definitions such as this raise the issue of the presence of mini-institutions within the community. Research conducted by J. David Smith provides an example: "When I first visited John in 1987, I was immediately taken with the institutional feel of the adult home where he was living. It had the look and smell of institutions I had visited years before…The term home connotes for me a personal "Community for All" Tool Kit ● 2004 ● WHAT IS AN INSTITUTION? ● Page 1
place, a place that belongs to its inhabitants and a place where individuality is paramount. A home is where you can be `yourself' and where the inhabitants know one another well, even if they don't live in complete harmony. I find particularly disturbing the use of the word home for impersonal, anonymous places where people have little control over their own lives" (Smith, 1995, p. 57). RESOURCES: st Braddock, D. (Ed.). (2002). Disability at the dawn of the 21 century and the state of the states. Washington, DC: American Association on Mental Retardation. Centers for Medicare & Medicaid Services. (2004). Intermediate Care Facility for People with Mental Retardation Program (ICF/MR). Available: http://www.cms.hhs.gov/medicaid/icfmr/default.asp Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice- Hall, Inc. Smith, J. D. (1995). Pieces of purgatory: Mental retardation in and out of institutions. Pacific Grove, CA: Brookes/Cole Publishing Co. INCLUDED WITH THIS SECTION AS A BACKUP DOCUMENT: Federal definitions of "institution." (2004). Syracuse, NY: Center on Human Policy. "Community for All" Tool Kit ● 2004 ● WHAT IS AN INSTITUTION? ● Page 2
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