“Community for All” Tool Kit Resources for Supporting Community Living

405 Pages·2004·14.78 MB·English

“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.

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