"COMMUNITY FOR ALL" TOOL KIT
RESOURCES FOR SUPPORTING COMMUNITY LIVING
This tool kit is the product of collaboration between the following
organizations:
(counter created
1/11/05)
“COMMUNITY FOR ALL” TOOL KIT
RESOURCES FOR SUPPORTING COMMUNITY LIVING
NOTES: Some
portions of this Tool Kit can either be found on the Web or will link
to external files; where possible, links to these external sites and
documents are included. Most files included or linked to are in
Portable Document Format (PDF) and will require the free Adobe Acrobat
Reader Program (available at
http://www.adobe.com ) to view them.
A full copy of the Tool Kit can be downloaded or printed. It is a large
document
and may take a considerable amount of time to download. You can order a
complete
copy of the Tool Kit including a CD with all documents. See the order
form
below.
Table of Contents - Web-Based Versio
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
III. 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. Olmstead and Other
Legal Resources
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
VII. Index
a. Author Index
b. Topical Index
I. Introduction
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.
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.
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:
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
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
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:
Braddock, D. (Ed.). (2002). Disability at the dawn of the 21st
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.
The community is not one place, but is the places, urban,
suburban, rural, South, West, North and East where Americans live.
It is houses and apartments, schools and houses of worship, factories,
stores, offices, ballparks, recreation centers and so much more. It
is not an idealized place, like Lake Wobegon, where all are perfect.
Communities have strengths and weaknesses, highs and lows. But
community
is the place where you make friends, have the choice of things to do
or not do, where you share your joys and sorrows, where your parents
brought you when you were born, where your grandparents live out their
lives. It is where people care about each other or stay distant,
again their choice. As our friend John McKnight says, communities are
places with infinite capacity for caring, for acceptance and for
opportunity.
America has been built on the strength of its communities.
Community is not a place where you are isolated, deprived
of the rights and experiences of other citizens when you have committed
no crime, not been convicted of any offense. Community is a place where
there are unlimited opportunities, not a place where because you are
“different” or “special” or “exceptional” you cannot fit in, blend in,
participate and contribute, give and receive.
Community is where all people belong, disability or not, in need of a
lot of supports, or some or none. Community is possibility and
opportunity and hope for the future. It is not a program, or services
or an alternative. It is the only choice.
Community Capacity--Is It Enough--How to Build?
When John McKnight calls communities places that have infinite
capacity, we agree.
The argument that the community does not have the capacity to serve all
people, or people with the most significant disabilities is false. It
is also a chicken and egg argument.
The nine states that do not have big congregate facilities for their
sons and daughters with disabilities have developed the capacity to
support each person, one at a time.
One of the things keeping institutions open does is robbing the
community of the opportunity to develop capacity for each person.
Communities are rich in resources and resources can be developed with
dollars reappropriated from segregated facilities.
The community provider network has a diverse set of organizations, and
there is the expertise in this country, in our providers, universities
and other community supports for people without disabilities to figure
out how to provide each person with a good life.
INFORMATION IN THIS SECTION IS BASED ON THE FOLLOWING:
Davis, D., Fox-Grage, W., & Gehshan, S. (2004). Deinstitutionalization
of persons with developmental disabilities: A technical assistance
report for legislators. Denver & Washington, D.C.: National
Conference of State Legislatures. Available:
http://www.ncsl.org/programs/health/Forum/pub6683.htm
(see section on State Strategies for a copy
of this report)
PLANNING FOR
QUALITY COMMUNITY SUPPORTS FOR MOVING INTO THE COMMUNITY
As we were developing this tool kit, we heard from people
whose loved ones are in institutions, and who had concerns about
community “readiness” and political awareness of some of the
difficulties involved. We address some of these issues separately
in many different sections of this tool kit. In this section, we
want to assure readers that institution closure can be safe, healthy,
and beneficial for people with disabilities and families, when good
planning principles are followed.
Many states and localities have already moved large numbers of people
into
the community, and in recent years have done so in a person-centered
way,
using planning tools such as “Essential Lifestyle Planning,”
“Person-Centered Planning,” “PATH,” or “MAPS” (go to
http://www.family-futures.org.uk/index.html and click on “Planning
Tools” for more on some of these processes). The point here is that
this has been done, over and over, and that
there are many people in the field with the expertise to help.
Following are some questions posed by a person who knew we were working
on this tool kit and who opposes institution closure. This
person’s comments are in italics throughout this page, and are followed
by our responses.
The person’s overall comment was, “The first priority for inclusion
in the ‘kit’ should be the tools and guidance to educate the groups on
the art of developing the following information first, which
can then be used as a firm foundation on which to pursue their desired
goal":
Developing and documenting the services that
those currently in the institutions are now receiving.
|
Our response: A comprehensive, person-centered
plan should be developed for each person who will
be leaving the institution. There are many good formats, and you can
view a description of them at the web address given above. The most
important thing is to identify what the person needs and wants, and
very specific information about likes and dislikes, medical conditions,
treatments and medications. Replicating what the institution provided
is not the point in such a plan, because institutions often provide
services
that a person does not want or need, and fail to provide things a
person
would really enjoy. However, the plan should encompass everything
the person must have in order to be healthy and safe in the community.
This document should be shared with those who will be providing support
for the person, long before the person leaves. It is advisable to
develop
a transition plan for each person, spelling out how the person will
move,
who will be responsible at the time of transition for continuity of
support,
and how problems will be solved.
|
Documenting how
those services can/could/might be provided in the community.
|
Our response: see above. Most providers of
services will take a person-centered plan and spell out how they will
implement the plan. Michael Smull has some very good materials on this.
Go to
http://www.allenshea.com/perversion.html , http://www.allenshea.com/listentome.html
, http://www.valuingpeople.gov.uk/pcp.htm
, and http://www.elpnet.net/ .
|
Researching and
documenting the man-hours correlating to the documented services
required
and needed to absorb the potential additional requirement on
services/providers in the community.
|
Our response: this
is a standard process, though different from state to state. Remember,
the purpose of moving people to the community is not to save money or
conserve resources. It is to improve the quality of people’s
lives. Frequently, at the time of transition people need more support
and, as they become accustomed to the community setting and the support
staff become accustomed to them, the needs for supports diminish. This
is an individual decision, not something that can be predicted or
planned in advance.
|
Document IF, WHERE, AND HOW the services are
actually currently available in the community to absorb the additional
documented workload.
|
Our response: this
is a red herring, and a favorite scare tactic of institutional
proponents. If the services and supports for each person are developed
individually, there is often nothing to SEE in advance of a decision to
close an institution. Once it has been decided that a person will move,
however, it should be possible for family members to visit people who
are currently living in a setting similar to what could be or is being
planned for a person. Before a person moves simple things can be
arranged. The name, address and phone numbers of physicians, dentists,
pharmacies, etc. can all be provided, and records can be transferred to
those places so that they are acquainted with the person. Before a
person’s move actually takes place, they should approve where they are
going to live, and they should visit several places to make sure they
are pleased with where they are going. The fact is, if a state has
decided to close an institution, then that state must ensure that
services will be developed to meet the needs of
everyone who will move. And in fact, that process has occurred
innumerable times over the past two decades. In any closure, advocates
would of course insist that the appropriate services be provided in the
community.
|
Document the cost for each service required
by each person currently served in an institution and the resultant
total cost to the system to effectively provide a
clear audit trail of the needed revenue.
|
Our response: The revenue streams are separate.
Usually the institution and community service revenue streams are
separate items in a state budget. The cost of the supports for each
person, and the total amount of available resources, are an essential
part of any plan, on an individual not a group basis. Some people will
cost more in the community and some less but decisions about moving a
particular individual out of an institution should never be made on the
basis of saving money. The fact is that in an institution, different
people require different amounts and types of resources and supports,
even though this is not costed out on an individual basis as it
might be in the community. The potential or real cost of serving a
person should not be an excuse for keeping him/her in an institution.
See our section
on Cost Issues for more information and argument on this
point.
|
Develop statistics reflecting the impact the
closure of the institution will have on those individuals currently in
the community as a result of the potential closure, i.e., how much
longer will those people currently on waiting lists in
the community and not receiving any services, or less services than
required, be expected to go without services and how much longer will
they remain on the "waiting list" as the result of a person discharged
from an institution taking priority.
|
Our response: There is no relationship between
these two, and in fact, keeping people in the institution increases,
not decreases, time on waiting lists. The people in institutions
already have funds spent on them and those funds, when allocated
properly, move to the community appropriation once the institution
closes. It is a myth that moving people from an institution increases
waiting lists. The opposite appears to be true in many cases,
because some states find creative ways of serving people on waiting
lists along with people moving from institutions.
|
Document the services those currently in the
community not receiving services require and cost these services out.
|
Our response: This
is a good waiting list strategy, but has nothing to do with getting
people out of institutions.
|
Develop a plan that ensures the documented
residential placements, caretakers, professional services, and revenue
will be in place in the community PRIOR to advancing to the next step
of advocating to close an institution that is providing quality
services for those with severe/profound mental retardation,
those most medically fragile, and those with extremely serious behavior
problems.
|
Our response: A good plan must address all of
these things, whether or not one accepts the assertion that quality
services are provided in the institution. Advocates of institution
closure should insist that such planning be done. See some of our other
sections, too—such as the State Strategies section, the
Quality of Life Outcomes in the Community section, and the
section titled All People Can Be Supported in the
Community . It should be obvious that you are not advocating
for a system that “dumps” people, unsupported, into an unprepared
community.
|
The person’s last comment was: Start with
some variation of the above approach and I will be convinced that you
are actually advocating in the best interests of our most severely
disabled citizens who are now well cared for by dedicated direct care,
nursing, medical, dental, and therapeutic staff in our
institutions.
|
Our response: no further response is needed to
this comment, but let us hope that the person is now convinced!
|
We include in this section an article prepared by John O’Brien in 1995
when New York State was planning a series of institution closures. It
reflects the thinking of the time—lots of emphasis on good planning,
and awareness that compromises (especially in regard to
individualization) might have to be made. He emphasizes the importance
of understanding which steps are compromises, so that more
individualized planning can be done after a person moves if it couldn’t
happen when he/she first left the institution. Thus, he warns against
building structures and infrastructure that cannot easily be changed
during the years after a move. While that is a possible strategy, in
other states advocates have insisted that
all moves should be individually planned and carried out.
Person-centered planning efforts indicate that these plans can help
people to get a good start in getting a life that makes sense to them.
However, these same efforts also demonstrate that good planning is only
the first part of the effort. Plans must be accompanied by
implementation and on-going learning. It is fair to say that efforts
over the past several years have strengthened the competencies of
community services, and of
community residents, in building capacity to support people with any
kind
of challenging condition, whether medical, behavioral, or forensic.
This
is where our efforts must be concentrated in the future. In many ways,
it is sad that we must still spend time and effort on arguments about
whether
institutions should be kept open, or reopened. We know so much now
about
how to support people in the community, and we should be spending
everyone’s
time in keeping the good that we have, in developing even more
community
capacity, and in learning from the people we support.
RESOURCES:
Holburn, S., & Vietze, P. M. (Eds.). (2002). Person-centered
planning: Research, practice, and future directions. Baltimore:
Paul H. Brookes Publishing Co.
O’Brien, J., & Lyle O’Brien, C. (Eds.). (1998). A little book
about person-centered planning: Ways to think about person-centered
planning, its limitations, the conditions for its success. Toronto:
Inclusion Press.
O’Brien, J., & Lyle O’Brien, C. (Eds.). (2002). Implementing
person-centered planning: Voices of experience. Toronto: Inclusion
Press.
INCLUDED WITH THIS SECTION AS A BACKUP DOCUMENT:
O’Brien, J. (1995, Winter). Issues and challenges in developing
individualized supports. In Individualized services in New York State
[Policy Bulletin No. 4] (pp. 20-22). Syracuse, NY: Research and
Training Center on Community Integration, Center on Human Policy,
School of
Education, Syracuse University. Available:
http://thechp.syr.edu/nysbisch.htm
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
WHO ARE IN THE
INSTITUTIONS TODAY?
The residents of the institutions in the United States range in age,
level of intellectual disability, additional conditions (other than
intellectual disability), and functional limitations. The same can be
said of those who live outside of such institutions. This section
provides more information on those still living in institutions,
because assertions are often made that these people are older and more
disabled and therefore cannot be supported safely in the
community. See the next section for more information on that.
In 2002, over half (55.4%) of the 44,066 people in large state
institutions serving 16 or more people were between the ages of 40
and 62. Children under 21 comprised only 4.5%, those between 22 and
39 comprised 30.9%, and only 9.2% were 63 or over. Obviously, it is not
the case that most of the people still in institutions are “old.” Most
have many years in which they could enjoy community life.
The Executive Summary and chapter included in this section
provide information on who is still in institutions, and on the changes
in the institution cohort over the years. For example, even though the
proportion of all residents having profound intellectual disabilities
has increased significantly, their actual numbers decreased by more
than 41,100 people between 1977 and 2002, and between June 1996 and
June 2002 their numbers decreased by about 10,700 persons. This rate
is similar to or even slightly faster than the rate of decrease in
people
with less severe intellectual impairments.
Similarly, the percentage of residents of large state institutions
reported to have functional limitations in various activities of daily
living, or to have additional impairments as well as intellectual
disability, remained stable between 1998 and 2002; but their actual
numbers decreased.
Advocates can use the research studies cited here to look at their own
states’ statistics in regard to characteristics of residents in state
institutions. Go to the first web site listed (you will need Acrobat
Reader to download it, and you can get it free at www.adobe.com ). The main point
advocates can make, however, is that people with all of the significant
disabilities that are usually cited as barriers to community living ARE
living in the community. Community programs
increasingly know how to support people with these disabilities. Most
people with significant disabilities are now living, and have always
lived, with their families.
INFORMATION IN THIS SECTION IS BASED
ON THE FOLLOWING:
Lakin, K. C., Larson, S. A., Prouty, R. W., & Coucouvanis, K.
(2002). Chapter 3: Characteristics and movement of residents of
large state facilities. In R. W. Prouty, G. Smith, & K. C. Lakin
(Eds.), Residential services for persons with developmental
disabilities:
Status and trends through 2002 (pp. 31-46). Minneapolis: University
of Minnesota, Research and Training Center on Community Living,
Institute
on Community Integration.
Prouty, R. W., Smith, G., & Lakin, K. C. (2002). Executive summary.
In R. W. Prouty, G. Smith, & K. C. Lakin (Eds.), Residential
services for persons with developmental disabilities: Status and trends
through 2002 (pp. iii-x). Minneapolis: University of Minnesota,
Research and Training Center on Community Living, Institute on
Community Integration.
INCLUDED WITH THIS SECTION AS BACKUP
DOCUMENTS:
Lakin, K. C., Larson, S. A., Prouty, R. W.,
& Coucouvanis,
K. (2002). Chapter 3: Characteristics and movement of residents of
large state facilities. In R. W. Prouty, G. Smith, & K. C. Lakin
(Eds.), Residential services for persons with developmental
disabilities: Status and trends through 2002 (pp. 31-46).
Minneapolis: University of Minnesota, Research and Training Center on
Community Living, Institute on Community Integration.
Prouty, R. W., Smith, G., & Lakin, K.
C. (2002). Executive
summary. In R. W. Prouty, G. Smith, & K. C. Lakin (Eds.), Residential
services for persons with developmental disabilities: Status and trends
through 2002 (pp. iii-x). Minneapolis: University of Minnesota,
Research and Training Center on Community Living, Institute on
Community
Integration.
For a complete copy of the entire report available at
http://rtc.umn.edu/risp02/risp02.pdf or http://rtc.umn.edu/risp/index.html
.
ALL PEOPLE CAN
BE SUPPORTED IN THE COMMUNITY
One common argument for keeping institutions open is that there are
some people who cannot be supported in the community. Typically, these
include people who have significant and complex medical needs,
behavioral issues, and psychiatric disabilities, and people who have
grown old
in the institution. How can advocates respond to these concerns?
First of all, people with these needs live in states that have closed
or drastically reduced the population of their public institutions, as
well as in states that rely on institutions to serve them. By 2001, 125
public institutions had closed across the country. The states of
Alaska, Hawaii, Minnesota, New Hampshire, New Mexico, Rhode Island,
Vermont, and West Virginia, and the District of Columbia, have closed
all of their public institutions. Arizona, Colorado, Maine, and
Michigan have very few people still living in public institutions by
that year. These states have developed successful strategies for
supporting people with significant needs in the community.
Second, many people with extensive support needs, similar to or more
intensive than the needs of those now living in institutions, are
living in the community today. Many of these people have never
lived in an institution. Many others have moved from institutions into
the community.
People with Challenging Behavior
In the last decade, studies of people who have moved from institutions
have consistently found improvements (or no deterioration) in adaptive
and challenging behavior after they move into the community. Many
states have developed systems of behavioral support and crisis
prevention/response, and many states have shifted from group settings
to individualized,
person-centered support services, thus reducing the provocations that
may trigger difficult behavior. Many people with behavioral issues,
now living in environments that interest and satisfy them, learn how
to express themselves in other ways. States need not rely on
institutions
to serve people with challenging behavior.
People with Significant and Complex Medical Needs
People who rely on feeding tubes and ventilators, who have
difficult-to-control diabetes or seizures or other potentially
dangerous
conditions, who need suctioning and frequent positioning, or who have
other medical conditions requiring sophisticated medical expertise
and technology, are living in the community in most states. For every
person with such needs in institutions, there are many with the same
or more complex needs living in the community, going to school, going
on family vacations, going to a workplace, and generally having as
normal
a life as possible. Their medical services are provided by community
doctors,
nurses, personal care assistants, provider agency staff persons, and
trained family members. At times, specialized medical services
must
be created or packaged in order to meet needs: medical equipment might
be brought into a home, or round-the-clock nursing assistance, to
enable the person to live as normally as possible. According to
the studies that we could find, it is clear that this group of people
is a small percentage of people with developmental disabilities, and
the data about their health outcomes is very limited. That is,
some data shows that most people’s health improves with a move to the
community, and other data shows that health outcomes for people with
the most severe disabilities are slightly worse. It should be
evident that where careful planning and implementation is done, those
with complex medical conditions have better outcomes.
The latest information from The Council on Quality and Leadership
(Gardner, 2003) states, ”In organizations participating in The
Council's accreditation program with the Personal Outcome Measures,
there is no tradeoff of health and wellness, freedom from abuse, or
safety in the pursuit of greater outcomes in the areas of community
affiliation, choice or self determination. The data show no
negative relationship between outcomes related to quality of life and
social capital and those of basic assurances. People can make choices
associated with where to live and
work, and what to do during the day without compromising health and
safety.
Promoting choice and connections to the community and relationships, in
fact, help to promote and sustain these basic protections."
The fact is that as a field, we know how to support people
with complex medical needs in the community, and to do so in a manner
that maintains their health and happiness. States need not rely on
institutions to serve people with complex medical needs.
People with Psychiatric and Developmental Disabilities
The states that have closed their public institutions for people with
developmental disabilities have also learned how to support people with
psychiatric disabilities (so-called “dually diagnosed” individuals) in
the community. In fact, far more people with both diagnoses are living
in communities all over the country than in public institutions. States
need not rely on institutions to serve people with both psychiatric and
developmental disabilities.
Older People with Developmental Disabilities
It is sometimes said that people who have grown old in a public
institution should not be moved into a home in the community, because
“the institution is the only home they have ever known.” However,
individuals who have moved out after growing old in institutions are
frequently very happy with the move. States need not keep
institutions open just for the older residents of such institutions.
People Involved with the Criminal Justice System
When a person with a developmental disability is charged with or found
guilty of committing criminal offenses, decisions about his or her
future placement are under the jurisdiction of the courts and the
criminal justice system. Some states have developed services for this
group of people, but the issue of whether or not they can be served in
the community is for the courts to decide, ideally in collaboration
with
the developmental disability service system. Institutions should not be
kept open for them, because there are other alternatives the courts can
utilize.
RESOURCES USED FOR THIS SECTION:
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
Hanson, R. H., Wiesler, N. A., & Lakin, K. C. (Eds.). (2001,
Spring). IMPACT: Feature Issue on Behavior Support for Crisis
Prevention and Response, 14(1). Minneapolis: Institute on Community
Integration, University of Minnesota.
INCLUDED WITH THIS SECTION AS BACKUP
DOCUMENTS:
Cheek, M. (2001, Spring). Serving persons with MR/DD who are involved
with state criminal justice systems. In R. H. Hanson, N. A. Wiesler,
& K. C. Lakin (Eds.), IMPACT: Feature Issue on Behavior Support
for Crisis Prevention and Response, 14(1), 22-23. Minneapolis:
Institute on Community Integration, University of Minnesota. Available:
http://ici.umn.edu/products/impact/141/prof6.html
Fitzgerald, T., & Lakin, K. C. (1995/96, Winter). The final stages:
Community services for people considered the most difficult to serve.
In M. F. Hayden, K. Charlie Lakin, & S. Taylor (Eds.),
IMPACT: Feature Issue on Institution Closures, 9(1), 24-25.
Minneapolis: Institute on Community Integration, University of
Minnesota.
Lakin, K. C. (2001, Spring). Community for all: Experiences in behavior
support and crisis response. In R. H. Hanson, N. A. Wiesler, & K.
C. Lakin (Eds.), IMPACT: Feature Issue on
Behavior Support for Crisis Prevention and Response, 14(1), 2-3,
27. Minneapolis: Institute on Community Integration, University of
Minnesota.
Available:
http://ici.umn.edu/products/impact/141/over2.html
Rosenau, N. (2004, March/April).
“But aren’t there some people…? Dispelling the myth. TASH
Connections, 30(3/4), 8-10, 30.
Smull, M. W. (2001, Spring). A crisis is not an excuse. In
R. H. Hanson, N. A. Wiesler, & K. C. Lakin (Eds.), IMPACT:
Feature Issue on Behavior Support for Crisis Prevention and Response, 14
(1), 1, 26-27. Minneapolis: Institute on Community Integration,
University of Minnesota. Available:
http://ici.umn.edu/products/impact/141/over1.html
OTHER RESOURCES:
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
Newton, P. (Ed.). (2004, March/April). Living in the community:
Supporting people with complex medical needs [Feature Issue]. TASH
Connections, 30 (3/4).
Opsal, C. (Ed.). (2002, September). Health status, health care
utilization patterns, and health care outcomes of persons with
intellectual disabilities: A review of the literature. Policy
Research Brief, 13(1). Minneapolis: Institute on Community
Integration, University of Minnesota. Available:
http://ici.umn.edu/products/prb/131/default.html
TRENDS IN INSTITUTION
CLOSURE
National Trends
The trend toward institutional closure began in the 1970s and continued
throughout the1980s and 1990s. Between 1970-1984, 24 institutions in 12
states were closed. By 1988, 44 institutions in 20 states had been
closed. And, by 2000, there were 125 closures, or planned closures, in
37 states. A number of factors contribute to this trend toward
institution closure. One is that as states have further developed their
community services system, they have less need or desire for
institutions. Second, due to rising costs of institutionalization,
states are relying less on institutional services.
State Trends
In 1991, New Hampshire closed the Laconia State School and
became the first state to close all of its public institutions. Since
that time, The District of Columbia, Vermont, Rhode Island, Alaska,
New Mexico, West Virginia, Hawaii, and Minnesota have also closed all
of their public institutions. In contrast, states which continue to
use institutions for a significant number of people include: Arkansas,
Louisiana, Mississippi, North Carolina, and Virginia.
Issues
- A number of states have not closed any public institutions. These
states include: Arkansas, Delaware, Idaho, Iowa, Louisiana,
Mississippi, Montana, Nebraska, Nevada, North Carolina, Utah, Virginia,
Wisconsin, and Wyoming.
- States which continue to support “an
extensive network of public institutions” include: Arkansas, Louisiana,
Mississippi, North Carolina, and Virginia.
- In some instances, institution closure has been achieved through
transfer of significant numbers of individuals to other institutions.
- One of the major challenges to institution closure is the
economic impact on and resistance from local communities and public
employee unions.
INFORMATION IN THIS SECTION IS BASED
ON THE FOLLOWING:
Braddock, D. (Ed.). (2002). Disability at the dawn of the 21st
century and the state of the states. Washington, DC: American
Association on Mental Retardation.
Lakin, K. C., & Prouty, R. (1995/96, Winter). Trends in institution
closure. In M. F. Hayden, K. C. Lakin, & S. Taylor (Eds.), IMPACT:
Feature Issue on Institution Closures, 9(1), 4-5. Minneapolis:
Institute on Community Integration, University of Minnesota.
OTHER RESOURCES:
Braddock, D., & Heller, T. (1985, August). The closure
of mental retardation institutions I: Trends in the United States. Mental
Retardation, 23 (4), 168-176.
Scheerenberger, R. C. (1987). A history of mental retardation: A
quarter century of promise. Baltimore: Paul H. Brookes Publishing
Co.
INCLUDED WITH THIS SECTION AS BACKUP
DOCUMENTS:
Braddock, D., Hemp, R., Rizzolo, M. C., Parish, S., & Pomeranz, A.
(2002). Table 2.5: Completed and in-progress closures of public
institutions. In D. Braddock (Ed.), Disability at the dawn of the
21st century
and the state of the states (pp. 93-94). Washington, DC: American
Association on Mental Retardation.
Lakin, K. C., & Prouty, R. (1995/96, Winter). Trends in institution
closure. In M. F. Hayden, K. C. Lakin, & S. Taylor (Eds.), IMPACT:
Feature Issue on Institution Closures, 9(1), 4-5. Minneapolis:
Institute on Community Integration, University of Minnesota.
TRENDS IN
DEINSTITUTIONALIZATION
Background
“Deinstitutionalization as a concept affecting mentally retarded
persons gained recognition during the late sixties; acquired greater
support during the seventies; and became a national political,
professional, and parental goals during the eighties” (Scheerenberger,
1987, p. 241). The population of people with intellectual disabilities
in public institutions peaked at 194,650 in 1967. Since that time,
there has been a significant national trend toward
deinstitutionalization. However, in the past
three years, the reductions in population at state institutions have
been the smallest in 30 years.
National Trends
By 1977, there were 149,892 individuals in public institutions, and by
2000 there were 47,374. Between 1990 and 2000, the number of
individuals in public institutions declined by 44%, from 84,818 to
47,374. In this same time period, the number of individuals in private
facilities for 16 or more people declined from 38,883 to 34,410 (26%),
and the number of people with developmental disabilities living in
nursing facilities
declined from 38,960 to 34,743 (23%).
State Trends
All states except Missouri and North Dakota reduced their public
institutional populations during 1996-2000. At the same time,
there is wide variation between states with respect to trends in
deinstitutionalization. The states with the greatest percentage
reduction in public institution population between 1996-2000
were: Kansas, Maine, Minnesota,
New York, Oregon, and Tennessee. These states reduced the size of
public institutions by 40%-86%. During the same time period, several
other states only reduced their institutional populations by less than
15%. These
states include: Arkansas, Delaware, Florida, Illinois, Iowa, Kentucky,
Mississippi, Missouri, Nebraska, Nevada, North Carolina, North Dakota,
Ohio, Texas, and Washington.
Issues
- Most recently, there has been a slowing of the trend toward
deinstitutionalization nationally. From 2001-2003, there was the
smallest rate of reduction in institutional size in 30
years.
- Over the years, some of the figures given for
deinstitutionalization of public institutions have been misleading, as
significant proportions of people were transferred to other types of
institutions including nursing homes.
- Between 1996-2000, the population of
people with developmental disabilities in nursing homes increased by
more than 100 in six states: Alabama, California, New York, Ohio,
Oklahoma, and Virginia. States with the highest per capita utilization
rates of nursing facilities were: Arkansas, Indiana, Mississippi, and
Oklahoma.
- There is wide variation within states on use of larger settings.
For example, in 2000, in 10 states, Arkansas, Georgia, Illinois,
Kentucky, Louisiana, Mississippi, New Jersey, Oklahoma, Texas, and
Virginia, 40% or more of all persons living in out-of-home residential
placement lived in public and private institutional facilities for 16
or more people.
- In 2000, there were 53,913 individuals with developmental
disabilities living in residential settings with
between 7-15 people. Although these are not typically counted as
“institutional” placements, due to their size as well as daily routines
and other aspects of life in these settings, many people with
disabilities, family members, and advocates consider them to be
mini-institutions within the community.
- Deinstitutionalization must be accompanied by provision of
necessary community supports. Over the years, some
people have been “dumped” into the community without adequate supports.
In response, some have focused their energy arguing against
deinstitutionalization, while the need is to focus energy on demanding
and establishing adequate community supports.
INFORMATION IN THIS SECTION IS BASED
ON THE FOLLOWING:
Braddock, D. (Ed.) (2002). Disability at the dawn of the 21st
century and the state of the states. Washington, DC: American
Association on Mental Retardation.
OTHER RESOURCES:
Lakin, K. C., Prouty, R., Polister, B., & Coucouvanis,
K. (2004, June). States’ initial response to the President’s New
Freedom Initiative: Slowest rates of deinstitutionalization in 30
years.
Mental Retardation, 42 (3), 241-244.
Scheerenberger, R.C. (1987). A history of mental retardation: A
quarter century of promise. Baltimore: Paul H. Brookes
Publishing Co.
INCLUDED IN THIS SECTION AS A BACKUP
DOCUMENT:
Lakin, K. C., Prouty, R., Polister,
B., & Coucouvanis, K. (2004, June). States’ initial response to the
President’s New Freedom Initiative: Slowest rates of
deinstitutionalization in 30 years. Mental Retardation, 42
(3), 241-244.
III. 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
WHAT’S WRONG WITH
INSTITUTIONS?
Issue
The idea of providing “human” services in an institution has never
worked and will never work. This is because of problems with the
nature of institutions. Wolfensberger (1975, p. 69) states: “It seems
as if the very model, as we have known it, is unworkable.” Problems
with
institutions are most powerfully revealed by the stories and
experiences of people who have lived in institutions. Tia Nelis, a
noted self-advocate, emphasizes the critical need to hear the voices of
those who live in or have lived in institutions: “Next time people
start talking about closing institutions, make sure you’re asking and
listening to the right people—those who live there. They know the truth
about these places” (Nelis, 1995/96, p. 27). Problems with institutions
are also revealed by research. Themes from personal accounts and
research include the following:
- Abuse and Neglect - People with intellectual and
developmental disabilities are vulnerable to abuse and neglect. These
can occur in institutions as well as in the community. However, because
of the large numbers of people in institutions and the
depersonalization that occurs in large settings, abuse is more common
and harder to detect in institutional settings. Experienced advocates
talk of a “wall of silence” among institutional staff. Due to
inadequate staff and lack of other resources, institutions became
places of widespread abuse and neglect. Dick Sobsey, a leading expert
on abuse of people with disabilities, says that people
who have the best chance of not being abused are those who are fully
integrated into the community and surrounded by people who care about
them.
- Dehumanization - Within institutions, people have been
treated in ways that disregard all human dignity and respect. In many
ways, people are thought of more like numbers than as humans. As one
example, in the past, many people who were buried in institutional
cemeteries had markers with numbers rather than their names.
- Segregation and Isolation from the Community -
Institutions cut people off from the mainstream of neighborhood and
community life. Many institutions have been geographically
located
in rural areas. Even in urban areas, though, institutions have operated
on a very self-sufficient basis, with the idea that the institution
itself is the “community” for those who live there. Thus, individuals
living in institutions have often had little or no opportunity to
participate
in the life of the community beyond the institution.
- Lack of Human and Civil Rights - People have been confined
to institutions for years without any legal reason, only because of the
label of “mental retardation.” They have been denied privacy, choice,
and control in their lives.
- Lack of Access to Education and Assistive Technology -
People in institutions have had very little opportunities to obtain an
education and/or acquire skills and competencies that would promote
independence. Instead, institutions have fostered dependency and often
loss of skills and competencies.
- Lack of Individualization in Services - Institutions do
not adapt their services to fit the needs of each individual. Instead,
people are forced to fit into the institutional setting.
RESOURCES:
Blatt, B. (1981). In and out of mental retardation: Essays on
educability, disability, and human policy. Baltimore: University
Park Press.
Hayden, M. F. (1997). Living in the freedom world: Personal stories
of living in the community by people who once lived in Oklahoma’s
institutions. Minneapolis: University of Minnesota, Research and
Training Center on Community Living, Institute on Community Integration
(UAP).
Nelis, T. (1995/96, Winter). The realities of institutions. In M. F.
Hayden, K. C. Lakin, & S. Taylor (Eds.), IMPACT: Feature Issue
on Institution Closures, 9(1), 1, 27. Minneapolis: Institute on
Community Integration, University of Minnesota.
Pratt, J. (Ed.). (1998). On the outside: Extraordinary people in
search of ordinary lives. Charleston, WV: West Virginia
Developmental Disabilities Planning Council.
Sobsey, D. (1994). Violence and abuse in the lives of people with
disabilities: The end of silent acceptance? Baltimore: Paul
H. Brookes Publishing Co.
Taylor, S. J. (1984). A man named August. Institutions,
Etc., 7(10).
Taylor, S. J. (1988). Caught in the continuum: A critical
analysis of the principle of the least restrictive environment.
Journal of The Association for Persons with Severe Handicaps, 13(1),
45-53.
Wolfensberger, W. (1975). The origin and nature of our
institutional models (Rev. ed.). Syracuse, NY: Human Policy Press.
COST/ECONOMIC
ISSUES
There are
many myths about the costs of institutional versus community services.
Some insist that a person with significant disabilities cannot be
served in the community because it would cost too much. Others insist
that
community services are always less expensive. In reality, the economic
issues related to maintaining institutions, as opposed to
deinstitutionalization or closure paired with development of quality
community services, are complex. Much depends on decisions made at the
state level about issues such as infrastructure, community
capacity-building, wages of community workers, and the like. Still,
research on the economic consequences of institutional downsizing and
closure is available and will be summarized in this cover sheet.
Also, it is crucial that costs be viewed in the aggregate—that is, for
a large group of people instead of on an individual basis. Making
decisions about whether or not someone should live in the community
based on the cost of serving that person is like saying that if a
person’s services and supports cost more than an arbitrary ceiling
amount, he or
she is not worth the expense. This goes against everything disability
advocates
stand for. When costs are aggregated, the average per-person cost is
the
standard, and it is appreciated that the expenses for some will be
higher
than the expenses for others.
Considerations Other than Money
Since 1980, 38 research studies have indicated that people who move
into communities from institutions show improvements in daily living
skills, community participation, frequency of contact with family
members and others in the community, greater choice, and satisfaction
(Kim, Larson, & Lakin, 1999). Public money is wisely spent when
people grow, learn, become more independent, and enjoy their lives, and
studies consistently show that people who move to the community are
much more likely to do just those things. Conversely, in institutions,
tax dollars are paying for services that are shown to produce poor
outcomes for the people served. This is poor public policy. In fact,
the states that have closed institutions have done so because it is the
right thing to do, not because it would save money.
Comparing Costs
In 2002, states spent an average of $125,746 per public institution
resident, as compared with $37,816 per person served in the community
through the Medicaid home and community based waiver (HCBS). However,
such comparisons can be misleading, in part because the services differ
in many respects, such as the amounts or types of support provided
and the characteristics of the people served. Most people still live
with families, so the costs of 24 hour supports that are provided
unpaid
by families can make community services look lower for those people.
In studies that looked more closely at the costs of services provided
to similar groups of people served in both types of settings, costs
of community services ranged from 5% to 27% less than state
institutional services provided to similar people. However, a major
reason for that difference was that substantially lower wages and
benefits are consistently (across states and providers) paid to direct
support workers in community service agencies.
Costs of Closing Institutions
When states close institutions, there is generally a period during
closure when more money must be spent. Safety must be ensured in the
institution for those who have not yet left, and at the same time there
must be expansion of services in the community. Community service
expansion should include the costs of building new or enhanced systems
for supporting people with significant disabilities (crisis behavioral
response systems, housing and work developers, service coordinators,
etc.),
as well as one-time expenses for start-up (housing deposits,
furnishings, appropriate clothing, etc.). Per-person costs in
institutions that are closing go up as people move because institutions
have many fixed costs that cannot be reduced. After closure, these
costs end.
One study (Stancliffe, Lakin, Shea, Prouty, & Coucouvanis, in
press) compared per diem institutional costs in states that had
dramatically reduced or closed institutions between 1988 and 2000 to
per diem costs in states that had very minor declines in institutional
populations
during the same years. This study found that the high-change states
had a greater increase in per-person costs in their institutions than
did the low-change states. However, their institutional populations
declined rapidly, bringing their overall institutional expenditures
down over time. Of course, those states that closed institutions had no
institutional per diem after closure and were able to spend all of
their
annual allocation in the community. Additionally, some states have been
able to sell their institutional facilities and land, and to use these
proceeds to support more people with developmental disabilities in the
community.
Cost Savings?
Recent cost comparisons of community and institutional services
do not support the position that there are “economies of scale”
associated with institutions or that community settings (especially
traditional setting such as group homes and sheltered employment) cost
less than institutions. These studies also suggest that costs are
associated with a state’s traditions as much as with any absolute “cost
of service” that can be identified. That is, one state may spend two or
three times as much, per person,
as another, due to many factors unrelated to the support needs of the
individuals being served. It is also important to note that the cost
impact of new ways of providing supports, such as consumer-directed
services
with individual budgets (often referred to as “self-determination”), is
just beginning to be studied. A 2004 Policy Research Brief, Costs
and Outcomes of Community Services for Persons with Intellectual and
Developmental Disabilities, which was recently published by the
Research and Training Center on Community Integration, presents
evidence about
individual budgets, as does the Spring 2004 IMPACT Feature Issue on
Consumer-Controlled Budgets and Persons with Disabilities. States can
use their budgets to do what they decide to do. As advocates, our
job is to remind them that all people are entitled to life in the
community, and that they
can make this a reality if they choose to do so.
INFORMATION IN THIS SECTION IS BASED ON THE FOLLOWING:
Eidelman, S. M., Pietrangelo, R., Gardner, J. F., Jesien, G., &
Croser, M. D. (2003, April). Let’s focus on the real issues. Mental
Retardation, 41(2), 126-129.
Kim, S., Larson, S. A., & Lakin, K. C. (1999). Behavioral outcomes
of deinstitutionalization for people with intellectual disabilities: A
review of studies conducted between 1980 and 1999. Policy
Research Brief, 10(1). Minneapolis: University of Minnesota,
Institute
on Community Integration. Available:
http://ici.umn.edu/products/prb/101/default.html
Kim, S., Larson, S. A., & Lakin, K. C. (2001). Behavioural outcomes
of deinstitutionalization for people with intellectual disability:
A review of US studies conducted between 1980 and 1999. Journal of
Intellectual & Developmental Disability, 26(1), 35-50.
Moseley, C., Lakin, C., & Hewitt, A. (Eds). (2004, Spring).
IMPACT: Feature Issue on Consumer-Controlled Budgets and Persons with
Disabilities, 17(1). Minneapolis: Institute on Community
Integration, University of Minnesota. Available:
http://ici.umn.edu/products/impact/171/default.html
Stancliffe, R. J., & Lakin, K. C. (2004, May). Costs and outcomes
of community services for persons with intellectual and developmental
disabilities. Policy Research Brief, 15(1). Minneapolis:
University of
Minnesota, Institute on Community Integration. Available:
http://ici.umn.edu/products/prb/151/default.html
Stancliffe, R. J., Lakin, K. C., Shea, J. R., Prouty, R. W., &
Coucouvanis, K. (in press). The economics of deinstitutionalization. In
R. J. Stancliffe & K.C. Lakin (Eds.), Costs and outcomes of
community services for people with intellectual disabilities.
Baltimore, MD: Paul H. Brookes.
Taylor, S. J. (2003, April). The editor’s perspective on institutional
and community costs. Mental Retardation, 41(2), 125-126.
RESOURCE:
Conroy, J. W. (1998, December). Are people better off? Outcomes of
the closure of Winfield State Hospital [Final Report (No. 6) of the
Hospital Closure
Project]. Rosemont, PA: The Center for Outcome Analysis.
INCLUDED WITH THIS SECTION AS BACKUP DOCUMENTS:
Eidelman, S. M.,
Pietrangelo, R., Gardner, J. F., Jesien, G., & Croser, M. D. (2003,
April).
Let’s focus on the real issues. Mental Retardation, 41(2),
126-129.
Stancliffe, R. J., Lakin, K. C., Shea, J. R., Prouty, R. W., &
Coucouvanis, K. (in press). Excerpts from The economics of
deinstitutionalization.
In R. J. Stancliffe & K.C. Lakin (Eds.), Costs and outcomes of
community services for people with intellectual disabilities.
Baltimore,
MD: Paul H. Brookes.
Taylor, S. J. (2003,
April). The editor’s perspective on institutional and community costs. Mental
Retardation, 41(2), 125-126.
QUALITY OF LIFE
OUTCOMES IN THE COMMUNITY
Issue
What quality of life improvements are experienced by people who move
from institutions into the community? Much research has focused on
certain specified “quality of life outcomes.” In order to best
understand quality of life outcomes, it is most important to listen to
the experiences and perspectives of individuals with disabilities who
have lived in the institution and
then the community.
What Is Quality of Life
Quality
of life is difficult to define; it is different for each person, and
depends on personal experience. Goode (1992, p. 3; cited in Taylor,
1994) quotes a definition from the National Institute on Disability and
Rehabilitation Research: “the timbre of life as experienced
subjectively; one’s feelings about/evaluations of one’s own life…”
There are
many ways that people have tried to capture and frame quality of life.
One of the most commonly used and referred to today in the field of
developmental disabilities is the five “valued experiences” proposed by
John O’Brien and Connie Lyle O’Brien (1987). These include: sharing
ordinary places and activities; making choices; developing abilities
and sharing personal
gifts; being respected and having a valued social role; and growing
in relationships.
Research on Quality of Life
For research purposes, many different definitions of quality of life
have been used. Research studies have examined quality of life across
domains such as interpersonal relations, social inclusion, personal
development, physical well-being, self-determination, material
well-being, emotional well-being and rights.
- There are numerous studies that document positive changes in
adaptive behavior for people who leave institutions and move into the
community.
- In addition, research reviews have found documentation of
positive changes associated with deinstitutionalization.
- Studies focusing on more subjective aspects of quality of life
(e.g., self-determination, autonomy, choice, etc.) have
also found positive changes.
Quality of Life and the Individual’s Perspective
In order
to really understand the difference between quality of life in an
institution and in the community, it is necessary to listen to the
stories of people
who have lived in institutions and in the community. Time after time,
these stories document abuse and lack of privacy, choice, and control
in the institutions. The stories tell of struggles in the community,
as well. However, there is unanimous agreement about the vast
improvement
of life in the community over life in the institution. For example,
Russ Daniels reflects, “Now, I live like a king. I’m happy, I do what
I want, go where I want, I can come back when I want.” Similarly, Mark
Samis states, “In the past few years, my life has all turned around.
Nothing but great things have happened to me since leaving the
institution.”
INFORMATION IN THIS SECTION IS BASED ON THE FOLLOWING:
Dagnan,
D., Trout, A., Jones, J., & McEvoy, J. (1995). Changes in the
quality of life of people with learning disabilities who moved from
hospital to
live in community-based homes. International Journal of
Rehabilitation Research, 18, 115-122.
Daniels, R., & Samis, M. (1995/96). Inside and out: Former
residents reflect on their lives. IMPACT: Feature Issue on
Institution Closures, 9 (1), 10-11. Minneapolis: Institute on
Community Integration, University of Minnesota.
Goode, D.
(1992). Quality of life policy: Some issues and implications of
a generic social policy concept for people with developmental
disabilities. Paper presented at the Annual meeting of the
American Association on Mental Retardation, New Orleans.
Kim, S., Larson, S. A., & Lakin, K. C. (1999). Behavioral
outcomes of deinstitutionalization for people with intellectual
disabilities: A review of studies conducted between 1980 and 1999. Policy
Research Brief, 10(1). Minneapolis: University of Minnesota,
Institute on Community Integration. Available:
http://ici.umn.edu/products/prb/101/default.html
Kim, S., Larson, S. A., & Lakin, K. C. (2001). Behavioural
outcomes of deinstitutionalization for people with intellectual
disability: A review of US studies conducted between 1980 and 1999.
Journal of Intellectual & Developmental Disability, 26(1),
35-50.
Larson,
S., & Lakin, K.C. (1989). Deinstitutionalization of persons with
mental retardation: Behavioral outcomes. Journal of the
Association for Persons with Severe Handicaps, 14(4), 324-332.
O’Brien, J., & Lyle O’Brien, C. (1987). Framework for
accomplishment. Lithonia, GA: Responsive Systems Associates.
Pratt, J.
(Ed.) (1998). On the outside: Extraordinary people in search of
ordinary lives. Charleston, WV: West Virginia Developmental
Disabilities Planning Council.
Schalock, R. (2004). The concept of quality of life: What we know
and do not know. Journal of Intellectual Disability Research, 48(3),
203-216.
Stancliffe, R. J., & Lakin, K. C. (1998). Analysis of
expenditures and outcomes of residential alternatives for persons
with developmental disabilities. American Journal of Mental
Retardation, 102(6), 552-568.
Taylor,
S. J. (1994). In support of research on Quality of Life, but against
QOL. In D. Goode (Ed.), Quality of life for persons with
disabilities: International perspectives and issues (pp. 260-265).
Cambridge, MA: Brookline Books.
Taylor,
S. J., & Bogdan, R. (1996). Quality of life and the individual’s
perspective. In R. L. Schalock (Ed.), Quality of life: Volume I:
Conceptualization and measurement (pp. 11-22). Washington, DC:
American Association on Mental Retardation.
Wehmeyer, M., & Bolding, N. (2001). Enhanced self-determination
of adults with intellectual disability as an outcome of moving to
community-based work or living environments. Journal of
Intellectual Disability Research, 45, 371-383.
INCLUDED WITH THIS SECTION AS BACKUP DOCUMENTS:
Daniels, R., & Samis, M. (1995/96).
Inside and out: Former residents reflect on their lives. IMPACT:
Feature Issue on Institution
Closures, 9 (1), 10-11. Minneapolis: Institute on Community
Integration, University of Minnesota.
Kim, S., Larson, S. A., & Lakin, K. C. (1999). Behavioral
outcomes of deinstitutionalization for people with intellectual
disabilities: A review of studies conducted between 1980 and 1999. Policy
Research Brief, 10(1). Minneapolis: University of Minnesota,
Institute on Community Integration. Available:
http://ici.umn.edu/products/prb/101/default.html
CHOICE
Issue
In the field of developmental disabilities, the concept of “choice” has
been used to justify institutionalization. In contrast, noted
self-advocate Tia Nelis states: “From my experiences with institutions
and with life “on the outside,” there are some things that I know to be
true. I’ve never met anyone who would choose to live in an institution
once they have
moved out.”
Perversions of “Choice”
The trend in the field of developmental disabilities is toward
increasing choice for individuals with disabilities. However,
there have been four major perversions of choice:
- Choice has been used to justify institutionalization by parents
or family members, without regard to the choices or interests of the
person with a disability.
- Choice has been used to justify institutionalization, when the
individual who is “choosing” the institution has had no idea what the
alternatives would be.
- Choice has been used to justify “dumping” people in the community
without adequate supports. This has sometimes led to
reinstitutionalization for the person.
- Choice has been used to justify placement in mini-institutions
within the community, when the individual was not given any alternative
choices.
Strategies for Promoting “Choice”
In light of these perversions, how can family members, friends,
advocates, service providers, and others best assist and support
individuals to make choices.
- All people should be presumed competent to make choices about
their lives.
- Those individuals who have difficulty expressing their
preferences need to be surrounded by a core group of people who know
them well to assist with making choices.
- Although family members can play an important role in supporting
people with developmental disabilities, they are not entitled to
substitute their own interests and wishes for those of people with
disabilities.
- Individuals with disabilities do not “choose” institutions or
mini-institutions when they have real knowledge and experience of
alternatives.
- People with disabilities sometimes make bad choices, as do people
without disabilities. Disability is not a reason for depriving
any person from making the same choices other people have the right to
make. At the same time, choice should never be used to justify neglect.
- The best safeguard against bad or harmful choices by people with
disabilities is a network of trusting, caring relationships. For all
people, choice is not typically a solitary activity. It is typically
done within the context of a network of close relationships. However,
especially due to institutionalization, people with disabilities have
been
cut off from such networks.
INFORMATION IN THIS SECTION IS BASED ON THE FOLLOWING:
Taylor, S. J. (2001, February). On choice. TASH Connections,
27(2), 8-10. Available:
http://thechp.syr.edu/on_choice.htm
OTHER RESOURCES:
Kennedy, M. J. (1996). Self-determination and trust: My experiences and
thoughts. In D. J. Sands & M. Wehmeyer (Eds.), Self-determination
across the life span: Independence and choice for people with
disabilities (pp. 37-49). Baltimore: Paul H. Brookes Publishing Co.
Nelis, T. (1995/96, Winter). The realities of institutions. In M. F.
Hayden, K. C. Lakin, & S. Taylor (Eds.)., IMPACT: Feature Issue
on Institution Closures, 9(1), 1, 27. Minneapolis: Institute on
Community Integration, University of Minnesota.
O’Brien, J. (1990). Developing high quality services for people with
developmental disabilities. In V. J. Bradley & H. A. Bersani
(Eds.), Quality assurance for people with developmental
disabilities: It’s everybody’s business (pp. 17-31). Baltimore:
Paul H. Brookes Publishing Co.
O’Brien, J., & Lyle O’Brien, C. (1993). Assistance with
integrity: The search for accountability and the lives of people with
developmental disabilities. Lithonia, GA: Responsive Systems
Associates. Available: http://thechp.syr.edu/!integri.pdf
Smull, M. (1995, August). Revisiting choice – Part 1 & Part 2.
Kensington, MD: Support Development Associates. Available:
http://www.elpnet.net/choice.html [Reprinted from AAMR News and
Notes, 8(4); AAMR News and Notes, 8(5)].
INCLUDED WITH THIS SECTION AS BACKUP DOCUMENTS:
Nelis, T. (1995/96,
Winter). The realities of institutions. In
M. F. Hayden, K. C. Lakin, & S. Taylor (Eds.)., IMPACT: Feature
Issue on Institution Closures, 9(1), 1, 27. Minneapolis: Institute
on Community Integration, University of Minnesota.
Obermayer, L. (2004, April 19). Choices
[Poem]. Rockville, MD: Author.
Smull, M. (1995, August). Revisiting choice – Part 1 & Part 2.
Kensington, MD: Support Development Associates. Available:
http://www.elpnet.net/choice.html [Reprinted from AAMR News and
Notes, 8(4); AAMR News and Notes, 8(5)].
Taylor, S. J. (2001, February). On choice. TASH Connections, 27
(2), 8-10. Available:
http://thechp.syr.edu/on_choice.htm
SAFEGUARDS
People with disabilities are sometimes vulnerable to harm, neglect, or
abuse. Thus, there is a need for certain safeguards. However, there are
vast differences in ideas about the best kinds of safeguards.
The Faulty Argument of Institutionalization as a Safeguard
Even today, some people argue that some people with disabilities are
more at risk in the community, and that institutionalization is the
best safeguard. They cite mortality studies as evidence, and use this
as grounds to oppose deinstitutionalization. However, this “evidence”
is highly disputed within the research community. More importantly, as
other researchers assert, “The question of whether mortality rates are
higher in institutions than the community is not the right question to
be asking today” (Taylor, 2001, p. 27). Instead, focus should be on
identifying and addressing the specific circumstances that create risk
in the community.
The Limitations of Regulations as a Way of Addressing Risk
In order to address risk, systems tend to impose more and more
regulations. However, there are problems with regulations:
- Regulations in the field of developmental disabilities create
greater bureaucracy.
- Regulations reflect the abuses of the past, and sometimes the
present, but limit the potential of the future.
- Regulations encourage investment unnatural environments.
- Regulations foster compliance.
- Regulations place control and power in the hands of regulators,
and not people with developmental disabilities and their families.
- Regulations direct attention to concrete and tangible things, and
trivialize the most important things in life.
What Can the Service System Do?
There are various strategies that can be helpful in keeping people safe.
- The best safeguard is personal relationships and social
networks beyond the service system. A priority for agency staff and
other support workers must be to assist people to build and maintain
such community connections.
- People are vulnerable when they have little or no power
and control. System reform efforts that enhance people’s power and
control will contribute to increased safety.
- Within service agencies, the roles and relationships of
staff to the people they support and families must be examined. For
example, it is important to ensure that there are a few staff who know
each person well.
- As an alternative to the current regulatory framework, people
with developmental disabilities and their families should be provided
with clear-cut rights and due process mechanisms.
- Abuse claims must be independently and vigorously investigated
and people who are found to be abusive must be punished.
- Training of staff is a key to preventing abuse. The more
staff know about how to best support people, the better off people will
be.
INFORMATION IN THIS SECTION IS BASED ON THE FOLLOWING:
Taylor, S. J. (1992, June). The paradox of regulations: A commentary.
Mental Retardation, 30(3), 185-195.
OTHER RESOURCES:
O’Brien, J., Lyle O’Brien, C., & Schwartz, D. B. (Eds.) (1990).
What can we count on the make and keep people safe? Perspectives
on creating effective safeguards for people with developmental
disabilities. Lithonia, GA: Responsive Systems Associates.
Available:
http://thechp.syr.edu/CountOn.pdf
Taylor, S. J. (2001). The continuum and current controversies
in the USA. Journal of Intellectual & Developmental
Disability, 26 (1), 15-33.
Taylor, S. J. (Ed.). (1998, October). Mortality in institutions and
community settings [Special issue]. Mental Retardation, 36
(5).
Taylor, S. J., O’Brien, J., & Hulgin, K. (Eds.). (1993, Winter).
Safeguards [Policy Bulletin No. 3]. Syracuse, NY: Research
and Training Center on Community Integration, Center on Human Policy,
School of Education, Syracuse University. Available:
http://thechp.syr.edu/bullsafe.htm
INCLUDED WITH THIS SECTION AS BACKUP DOCUMENTS:
O’Brien, J., Lyle O’Brien, C., & Schwartz, D.
B. (Eds.) (1990). What can we count on the make and keep people
safe? Perspectives on creating effective safeguards for people
with developmental disabilities. Lithonia, GA: Responsive Systems
Associates.
Taylor, S. J., O’Brien, J., & Hulgin, K. (Eds.). (1993, Winter).
Safeguards [Policy Bulletin No. 3]. Syracuse, NY: Research and
Training Center on Community Integration, Center on Human Policy,
School of Education, Syracuse University. Available:
http://thechp.syr.edu/bullsafe.htm
FAMILY ISSUES
Family members of people with disabilities are as varied as are other
Americans, and cannot be categorized as having one view about
topics such as whether their son or daughter should live in an
institution.
Much depends on their own life experiences. Depending on where they
live,
or where their son, daughter, brother or sister lives, they will have
had very different experiences. No organization can claim to
speak
for “all” parents. However, family members’ membership in the major
national parent/family organizations (as well as professional and
consumer organizations) that have taken positions in favor of community
development and institution closure is much, much higher than
membership in any family organization that advocates for maintaining
institutions. Most family members, by far, want their sons and
daughters to live in the community, with adequate
supports. Even without adequate supports, most parents would rather
wait
for community services (by having their sons or daughters placed on
waiting
lists) than to have their child placed in an institution. There
are
significant waiting lists for community supports and essentially none
for
institutionalization. There is not new demand for institutional
care.
That said, family members have many, many questions and concerns that
must be addressed with respect and deep listening. This toolkit
attempts to answer some of the many concerns families may have.
This section looks more narrowly at concerns and feelings which
families have about deinstitutionalization.
Common Concerns
Some common comments, and responses that can be given, follow:
Show me where my son or daughter will live
when they leave the institution.
|
As programs are usually developed one at a time,
frequently there is no place to show until the time a person
is about to leave the institution. This is a strength, not a weakness,
a sign of individualization instead of routinization.
|
My son or daughter needs a level of
care not possible in the community.
|
Level of care is not a place. The ICF/MR model
was made up out of whole cloth, the best guess in the early 1970s about
how to care for people. The intensity, duration and frequency of
supports a person needs can be delivered anywhere. It is not about real
estate, it is about providing each person what he or she chooses based
on his or her preference and desires.
|
My son or daughter was in the community for a
while and he failed and was brought back to the institution.
|
Systems sometimes fail people, but the
person has not failed. There is no excuse for a poor quality community
program. But it is possible to have a rich and full life in the
community,
and it is not possible to do so in an institution.
|
Three resources for advocates facing questions and concerns about
family matters are included with this section as backup documents:
- The most recent research synthesis (and a summary of that
synthesis) of parent attitudes about residential placement before and
after deinstitutionalization. This synthesis shows that parents who
initially opposed community placement for their son or daughter were,
for the most part, much more positive about it after their family
member
had moved, and it offers their suggestions for ways of making the
transition
more acceptable and comfortable for parents. Even though this synthesis
was published in 1991, there has been little research on this topic
since
then.
- A paper, written by Sue Swenson of The Arc of the US, that
addresses family concerns in a “question and answer” format.
RESOURCES:
Anderson, L., & Larson, S. A. (1995/96, Winter). Parental
attitudes toward deinstitutionalization. In M. F. Hayden, K. C. Lakin,
& S. Taylor (Eds.), IMPACT: Feature Issue on Institution
Closures,
9(1). Minneapolis: Institute on Community Integration, University
of Minnesota.
Larson, S. A., & Lakin, K. C. (1991). Parent attitudes about
residential placement before and after deinstitutionalization: A
research synthesis. JASH, 16(1), 25-38.
Swenson, S. (2004). My son or daughter is not the same as yours:
How to answer that question. Silver Spring, MD: The Arc of
The United States.
INCLUDED WITH THIS SECTION AS BACKUP DOCUMENTS:
Anderson,
L., & Larson, S. A., (1995/96, Winter). Parental attitudes toward
deinstitutionalization. In M. F. Hayden, K. C. Lakin, & S.
Taylor (Eds.), IMPACT: Feature Issue on Institution Closures, 9
(1). Minneapolis: Institute on Community Integration, University of
Minnesota.
Larson, S.
A., & Lakin, K. C. (1991). Parent attitudes about residential
placement before and after deinstitutionalization: A research
synthesis. JASH,16 (1), 25-38.
Swenson, S. (2004).
My son or daughter is not the same as yours: How to answer that
question. Silver Spring, MD: The Arc of The United States.
IV. Strategies
- a.
State Strategies
- b.
Strategies for Advocates
- c.
Working with the Media
- d.
Position Statements
- e. Olmstead and Other
Legal
Resources
STATE STRATEGIES
Background
In the 1970s, states focused on “reforming” institutions. As people
realized that institutional reform was not the right goal, beginning
in the early 1980s, states put increased focus on institutional
closure.
On January 31, 1991, New Hampshire closed Laconia State School and
became
the first state in the country to provide all of its services to people
with mental retardation in the community. There were 125 closures, or
planned closures, by 2000, in 37 states (Braddock, 2002, p. 91). States
that had closed all of their public institutions by 2001 included New
Hampshire,
D.C., Vermont, Rhode Island, Alaska, New Mexico, West Virginia, Hawaii,
and Minnesota (Braddock, 2002, p. 92).
Issue
Many strategies and lessons can be learned from states that have closed
institutions. These include states that have closed all public
institutions, as well as states that have made substantial progress
toward complete
closure. Different strategies are used by different states. For
example,
some are more public about their intention to close institutions, while
others do it without public announcement. In order to fully understand
various
state strategies, it is necessary to understand the particular
circumstances and background that led to closure. For instance, it is
important to understand the long, hard advocacy work that is involved
(see information on advocacy and legal strategies).
This information sheet summarizes some of the key state strategies of
institutional closure.
Key State Strategies
- Building a shared vision of “community for all” among many
different individuals and groups.
- Planning that involves a wide variety of individuals who
represent different organizations and interests.
- Closing the front doors. This involves identification of the
pathways that lead to institutionalization, and work to provide
alternatives. In doing this, some states (e.g., New Hampshire,
Michigan) have chosen to focus on children first, and then move on to
adults. Many states have laws eliminating admissions for children
or requiring a court to order the admission.
- Working to increase community supports. This includes identifying
and addressing gaps in the community service system and ensuring that
there is adequate funding for community services including the
availability
of very intensive supports for people with significant medical needs or
behavioral challenges.
- Inclusion of people with the most severe disabilities, complex
medical needs, and behavioral issues early in deinstitutionalization
efforts. This will ensure that lessons are learned about what it takes
to support all people in the community.
- Recognition that there will be compromises associated with
institutional closure. For example, during closure, everyone may not
have
the opportunity to move to the most individualized setting possible
right
away. However, it is most important that these compromises are
recognized, so they can be addressed at a later time. At the same time,
it is critical to avoid institutional closure through transfers to
other public or private institutions or mini-institutions in the
community. Otherwise, nothing will
have been accomplished and people will remain at those places for a
long
time.
- Recognition that some parents will have great fears about
moving their son or daughter from the institution. It is important not
to see these parents as “the enemy,” but to work to answer questions
and
dispel myths. Clear and constant communication is crucial.
- It is crucial to address workforce issues as part of the
institutional closure process. For example, during the closure of
Brandon Training School in Vermont, the Vermont Division of
Developmental Services made significant effort to assist staff in
getting other jobs. At the same time, it is
important to be clear that, ultimately, decisions about institutional
closure
must be based on what is best for people with disabilities (e.g.,
quality
lives in the community) rather than the workforce issues.
- It is also important to address local community issues related to
institutional closure, such as the economic impact of closure as well
as future land use. For instance, again, during the closure of Brandon
Training School in Vermont, some of the citizens of the community of
Brandon were concerned about the economic impact that closure would
have upon the community (e.g., on small businesses) as well as what
would become of the facility
and land around it. The Vermont Division of Developmental Services
formed
a task force to work with the citizens of Brandon to discuss and
address these issues. The facility is now used for multiple purposes
including: real estate developer office, school supervisory union
office, senior housing, day care, and a community meeting space.
Examples from other states include former institutional facilities that
have been converted to use as business/industrial parks and
condominiums with golf courses. Again, as with workforce issues, it is
important to be clear that decisions about institutional closure must
be based on what is best for people with disabilities (e.g., quality
lives in the community).
- States often use public education campaigns as part of their
efforts to address community opposition to deinstitutionalization.
However, states cannot wait until opposition has been resolved to
implement deinstitutionalization. And, experience has shown that
community members often become more accepting as they have positive
interactions with people with disabilities who are included in their
communities.
- Many states have passed legislation related to zoning so that
group homes cannot be excluded from residential neighborhoods based
solely on neighborhood opposition. At the same time, states, regions,
and localities find that there is virtually no opposition when they
develop more individualized alternatives to group homes. In addition,
as has been addressed elsewhere in this tool kit, these individualized
alternatives offer people with disabilities much greater choice and
control in their lives.
INFORMATION IN THIS SECTION IS BASED ON THE FOLLOWING:
Taylor, S. (1995/96). Thoughts and impressions on institutional
closure. In M. F. Hayden, K. C. Lakin, & S. Taylor (Eds.), IMPACT:
Feature Issue on Institution Closures, 9(1), 8-9. Minneapolis:
Institute on Community Integration, University of Minnesota.
OTHER RESOURCES:
Braddock, D. (Ed.) (2002). Disability at the dawn of the 21st
century and the state of the states. Washington, DC: American
Association on Mental Retardation.
Braddock, D., & Heller, T. (1985). The closure of mental
retardation institutions I: Trends in the United States. American
Journal on Mental Retardation, 23(4), 168-176.
Covert, S. B., MacIntosh, J. D., & Shumway, D. L., (1994). Closing
the Laconia State School and Training Center: A case study in systems
change. In V. J. Bradley & B. Blaney (Eds.), Creating
individual supports for persons with developmental disabilities
(pp. 197-211). Baltimore, MD: Paul H. Brookes Publishing Co.
Davis, D., Fox-Grage, W., & Gehshan, S. (2004). Deinstitutionalization
of persons with developmental disabilities: A technical assistance
report for legislators. Denver & Washington, D.C:
National Conference of State Legislatures. Available:
http://www.ncsl.org/programs/health/Forum/pub6683.htm
Shoultz, B., Walker, P., Hulgin, K., Bogdan, R., Taylor, S., &
Moseley, C. (1999). Closing Brandon Training School: A Vermont
story. Syracuse, NY: Center on Human Policy, Syracuse University.
Available:
http://thechp.syr.edu/brandon.htm
INCLUDED WITH THIS SECTION AS BACKUP DOCUMENTS:
Davis, D., Fox-Grage, W., & Gehshan, S. (2004). Executive
summary. In Deinstitutionalization of persons with
developmental disabilities: A technical assistance report for
legislators. Denver & Washington, D.C: National
Conference of State Legislatures. Available:
http://www.ncsl.org/programs/health/Forum/pub6683.htm
Davis, D., Fox-Grage, W., & Gehshan, S. (2004). Introduction.
In Deinstitutionalization of persons with developmental
disabilities: A technical assistance report for legislators.
Denver & Washington, D.C: National Conference of State
Legislatures. Available:
http://www.ncsl.org/programs/health/Forum/pub6683.htm
Davis, D., Fox-Grage, W., & Gehshan, S. (2004). What are
states doing? In Deinstitutionalization of persons with
developmental
disabilities: A technical assistance report for legislators.
Denver & Washington, D.C: National Conference of State
Legislatures.
Available:
http://www.ncsl.org/programs/health/Forum/pub6683.htm
Shoultz, B., Walker, P.,
Hulgin, K., Bogdan, R., Taylor, S., & Moseley, C. (1999, March).
Closing Brandon Training School: A Vermont story. TASH Newsletter,
25(3), 8-10.
Taylor, S.
(1995/96). Thoughts and impressions on institutional closure. In M. F.
Hayden, K. C. Lakin, & S. Taylor (Eds.), IMPACT: Feature Issue
on Institution Closures, 9(1), 8-9. Minneapolis: Institute on
Community Integration, University of Minnesota.
This tool kit is filled with “talking points” for advocates during
discussions on institution closure. Each of the sections
addresses a question or issue that could be raised by those wanting to
keep institutions open, or by policymakers wanting to know more about
the issue.
This section, however, presents a smorgasbord of strategies that
can be adapted by advocates to fit the situation in their own states
(also
see the separate section on working with the media).
Inform and Organize
- Pull together a coalition of key stakeholders who are willing to
learn about and inform others about what has been done elsewhere in
regard to institutional closure. Then, inform them on what you know,
and let them inform you. This group or coalition can form the basis for
your organizing.
- Gather signatures or endorsements for position statements or a
statement of principles, and disseminate these to decision-makers (see
section on Position Statements). Consider litigation (see section…..)
Work with the Governor and Executive Branch
One person wrote us this message as we were pulling together this
tool kit: “Essentially you need a strong Governor who makes the
decision
and sticks to it. I have closed SODC(s) [State Operated Developmental
Centers] in four different states and it is always a political decision
and only works if the leadership is strong enough to insist that it
shall be done.” While institutions have closed in states where the
Governor opposed closure, having the Governor’s support is better, and
will make it more likely that the transition is smooth and good for the
people affected. How to gain that support?
- Make appointments with the Governor, his or her staff members,
and/or heads of state offices, and take a group to these meetings;
develop your position and present it succinctly, with backup resource
documents that address the most important issues.
- Work as an individual, not as a representative of a nonprofit
organization, on the Governor’s political campaign, and make sure
his/her staff members know about your organization and its views.
- Write position papers that address major issues that are
important in your state (“choice,” for example); offer well-thought-out
solutions to state problems.
- Present information on how other states have achieved closure.
Select states that are close to yours in population and other
demographics, where possible. You may contact the organizations
responsible for
this tool kit for this kind of information.
- Make it clear that you represent a large number of people who are
not going to go away until your goals have been achieved.
- Find people who are close to the Governor—acquaintances, donors,
political supporters, etc.—and help them to convey your message about
the importance of closure directly to the Governor.
Work with the Legislature
- Make sure your legislators know who you are and what you
represent. Meet with them and their staff members as often as you can,
even when
there is not a crisis or a specific piece of legislation or political
issue currently in front of the legislature.
- Testify when there are legislative hearings related to community
services and institution closure.
- Propose legislation, if you have developed a relationship with a
legislator who will introduce it.
- As an individual (not as a representative of a tax-exempt
organization), work on legislative campaigns, or host a coffee meeting
for a candidate in your home.
- Hold forums for candidates, where each answers questions about
your issues.
- Send questionnaires to candidates and publish their answers as
widely as possible.
Work with Key Departments in State Government
- Develop relationships with officials in departments that oversee
and fund the services for people with developmental disabilities.
Invite them to speak at events you sponsor, or to address your board
meetings, for example. If you have disagreements, air them and explain
your positions (backing them up with current information and
research).
- Be a source of cutting-edge ideas for state departments. Get on
Internet mailing lists that discuss and inform on national trends and
great ideas.
- Develop position papers that detail directions policymakers could
take. For example, a coalition in New York developed a “most integrated
setting” position paper related to Olmstead implementation. The
position paper listed changes that could be made in current practice
and was distributed to policymakers in several state departments, the
Governor, and legislators. It was also endorsed by dozens of
organizations and coalitions, and their endorsements were made known to
policymakers. The information in this tool kit is tailor-made for this
activity.
Hold a Public Forum on Institutional Closure or Other Issues
- Organize people in your community or in the state capitol to plan
and put on a public forum in a governmental space (legislative
chambers, city council chambers, etc.).
- Invite legislators from your community and other decision-makers
to the forum; give them time to respond, but at the end of the evening,
after they’ve heard the testimony.
- Plan the testimony so that powerful speakers representing various
constituencies are “on” first, followed by audience members who wish to
speak (for example, lead off with a parent whose child was once
institutionalized and is no longer, followed by a person who once lived
in an institution, followed by a university professor who has studied
institutions, followed by someone now institutionalized, and so on).
- Make sure all the major issues are addressed by someone.
- Publicize the forum widely.
- Have petitions and/or position statements for people to sign or
endorse, along with fact sheets and other materials (see section on
position statements).
- Have good moderators who will introduce the evening and the
legislators present as well as keep time (2-3 minutes per testifier is
best) so the forum stays lively and impassioned.
- Consider videotaping and/or transcribing the forum, and editing
these afterwards to present as testimony to state officials and
legislators (especially if your forum is not in the capitol).
Study Good Web-Based Materials on Advocacy
- http://www.thearc.org/ga/trainmat.html
is the training page of The Arc, and covers how a bill becomes
law (national), how to be an effective legislative advocate, tips
on writing or emailing a member of Congress, how to have a meeting
with a legislator or their staff, general tips on working with the
media, and how to write a letter to the editor of your local paper
- http://www.tash.org/govaffairs/
has links to help you contact your Senator and/or Representative, along
with links to Senate and House Committees that make decisions on policy
affecting people with disabilities.
- http://www.ndss.org/content.cfm
has a tab at the top labeled “Advocacy Center.” Click on that for lots
of great information for advocates, including tips for advocates,
organizing coalitions, interacting with policymakers, and others.
- http://www.disabilitypolicycenter.org/
is the web site of Bobby Silverstein, former principal advisor
to Senator Tom Harkins and now Director of the Center for the Study
and Advancement of Disability Policy (CSADP). CSADP provides public
education, leadership development and training, technical assistance
and information dissemination, and conducts action-research and
analysis
of public policy issues affecting individuals with disabilities and
their families.
Work with Reporters and Editorial Boards
- Develop events that will interest the media and help you to get
the word out, such as a public forum, a candidates’ night, a rally for
institution closure, etc.
- Cultivate specific reporters who have an interest in (or are
assigned to cover) your topic. Make sure they are informed every
time something newsworthy is about to occur (your forum, rally, etc.),
or has occurred (an allegation of abuse in an institution, for
example).
Make sure they receive a written statement detailing your position each
time you contact them.
- With a group, make an appointment with the editorial board
of a local media outlet (e.g., the most well-read newspaper in your
area). Present a compelling case for your view of a critical situation
(e.g., a proposed bill to re-open an institution).
- Get stories to the media about a real person who left an
institution in your state and is now having a good life in the
community, or about a parent or family member who once had misgivings
and now is pleased with the results of their family member’s move into
the community.
- It is important that families, professionals, advocates and
people who left institutions are seen as having one voice. Journalists,
like the general public, get sidetracked or confused by infighting
between groups.
Letters to the Editor & Op-Ed Pieces
Letters to the editors of newspapers and magazines, along with op-ed
pieces (opinion essays that appear on the editorial pages of
newspapers), can be very influential at the local or state level. For
example, a leader of an organization fighting for closure of an
institution in their area could write an op-ed piece for a local
newspaper, and members could follow up by writing response letters, the
more the better. The controversy could stimulate a newspaper to assign
a reporter to write an article, especially if the op-ed piece and
letters provide new or formerly unreported information (e.g., cost
comparisons, personal experiences, parents’ perspectives). It could
also prompt the newspaper’s editorial board to print an editorial
in favor of closure.
One consequence of such efforts is that local legislators may be
influenced to stand up for closure of an institution in your area, or
for closure
of an institution in another part of the state.
Advocates can also use the media to influence state-level policymakers,
who are most likely to make the final decisions about closure of an
institution. Letters to the editor or op-ed pieces can be submitted to
the newspapers in the state capital, for example. Statewide advocacy
organizations can
ask their members to write to their local newspapers, creating an
impression of a statewide groundswell for closure.
This section includes sample op-ed pieces and letters to the
editor. Your organization may wish to adapt them for its own
purposes or to develop its own.
Ideas to Help You Get Your Letter to the Editor Published:
- Use your own words--ideas that come directly from you will
be most powerful.
- Keep it very brief and to the point--if your newspaper has
a word limit, stick to it or they may make it shorter. It will be
better
to do your own cutting so your most important points are kept.
- One key to getting your letter published is to respond right
away to a specific article (or another letter or editorial) that has
just been published. Don't wait too long or they may feel your letter
is out
of date.
- Be sure to include contact information including your name,
address, phone number and e-mail address. Often newspaper editors need
to
call to make sure you are the person who wrote the article. They don't
print
your phone number or any contact information.
- Your newspaper's letters page should give you an email address
or a fax number to use, or you can look on the newspaper's web site,
call them, or try these web sites:
http://congress.org/congressorg/dbq/media/ or
http://capwiz.com/thearc/dbq/media .
Help the Media to Do a Great Job of Covering Disability Issues
- Go to the web site of the Center for an Accessible Society, http://accessiblesociety.org/
, and click on “media” in the box on the left side of the page. There
are many resources within this web site, which was created for
journalists writing about disability issues.
- Go to
http://www.raggededgemagazine.com/mediacircus/styleguide.htm for a
style guide for journalists. The home page of Ragged Edge Magazine
, http://www.raggededgemagazine.com/
, leads to all sorts of good articles, such as
http://www.raggededgemagazine.com/0199/d199me.htm for tips on
working with reporters on your issues or
http://www.raggededgemagazine.com/mediacircus/opedtips.htm for
tips on writing op-ed pieces that get published.
- Go to the disability section of the Journalists’ Toolbox web
site,
http://www.journaliststoolbox.com/newswriting/disabled.html , for
an enormous number of links and resources, including disability
statistics and guidelines for journalists.
- Go to the web site of the National Center on Disability and
Journalism, http://www.ncdj.org/ ,
to http://www.ncdj.org/newsletter.php
for their newsletters or to
http://www.ncdj.org/styleguide.php for a style guide for
journalists.
- Go to the “Resources for Reporters” page of the web site of the
Institute on Disability,
http://www.iod.unh.edu/reporters-room.html for another style guide
for journalists.
INCLUDED WITH THIS SECTION AS BACKUP DOCUMENTS:
Sample op-ed pieces and letters to the
editor
Position statements on issues can advance your cause in many ways:
- Developing position statements helps to achieve consensus among
the members.
- Position statements guide the actions of everyone involved
in the organization.
- Organization members evaluate their activities based on whether
they fulfill or contradict the organization’s positions.
- Advocates use position statements of their own or of other
organizations when they approach legislators and other decision-makers.
- Jointly signed positions allow different organizations to come
together in a united front.
This section of the tool kit provides sample position statements that
your organization can endorse (such as The Community Imperative),
adopt (such as The Arc/AAMR position on housing), or adapt for your own
purposes. We include the positions of a number of Maryland
organizations as an example of the pro-community work of people in one
state. We also include
the position taken by the national self-advocacy organization,
Self-Advocates Becoming Empowered (SABE).
INCLUDED WITH THIS SECTION AS BACKUP DOCUMENTS:
Sample position statements
For years, advocates have filed lawsuits and promoted legislation to
close institutions and to establish rights to community services. While
the results of such efforts have varied, there are now many precedents
for
use by advocates. The most promising of these, the Olmstead decision,
is
described below. Advocates can use this decision in many ways, whether
on
behalf of one individual or on behalf of the cause of institutional
closure.
The Olmstead Decision
On June 22, 1999, in a 6-3 opinion written by Justice Ruth Bader
Ginsburg, the Supreme Court affirmed a ruling by the United States
court of Appeals for the Eleventh Circuit that unjustified isolation of
individuals with disabilities is properly regarded as discrimination
based on disability.
The Court ruled in Olmstead v. L.C. & E.W. that “[U]nder Title II
of the ADA, States are required to provide community-based treatment
for persons with mental disabilities when the State’s treatment
professionals determine that such placement is appropriate, the
affected persons do not oppose such treatment, and the placement can be
reasonably accommodated, taking into account the resources available to
the State and the needs of others with mental disabilities.”
While the Olmstead decision does not state that institutions must be
closed or depopulated, it provides very strong leverage to advocates
who know that individuals with significant disabilities can live in the
community, with the appropriate mix of supports. It establishes that
all people have civil rights and that there are legal requirements that
must be met by states. It gives people with disabilities and their
advocates the legal right to
request community services and to waiting lists that move at a
reasonable pace.
Your own state may have developed a plan to implement the decision,
as was recommended by the Court and the Department of Health and Human
Services. The plan should include information on how many people
currently
in institutions want to move out, and should set timetables for getting
people out of institutions. In states with a good Olmstead plan,
advocates
can review the plan and assess whether the state’s actions and policies
are in accordance with the plan. In states with an inadequate plan, or
with no plan, advocates should refer policymakers back to the decision
itself and insist that the rights it establishes are not to be abridged
due to economic considerations, bad or no planning, or any other
excuses.
So-called “Olmstead planning” is not required by the Olmstead decision.
In fact, if little change has occurred in a state in the years since
the
decision, it is reasonable to assume that a plan will not make the
difference.
Instead, advocates should look at how their states spend their money.
Are
they building capacity for serving more people in the community? Are
they
developing policies and funding streams so that people can more easily
move
into the community? Are the state waiting lists shrinking? Use these
and
other such questions to bring attention back to the issue of whether
states
are meeting the mandate posed by the Olmstead decision.
Note: a section on litigation will be developed at a later
date. It will be available on the Tool Kit web site and by
contacting the organization that provided you with a copy of the Tool
Kit. Please let them know if you wish to have the litigation
section when it has been completed.
RESOURCES:
There are many resources now available about the Olmstead decision:
INCLUDED WITH THIS SECTION AS BACKUP DOCUMENTS:
Community Integration/Medicaid. (2004, May 26). Washington, D.C.:
National Association of Protection and Advocacy Systems (NAPAS).
Available:
http://www.napas.org/I-3/I-3-D/community%20integration-medicaid%20home.htm
National
Council on Disability. (2003, September 29). Executive
summary. In Olmstead: Reclaiming institutionalized lives
[Abridged Version] (pp.
1-8). Washington, D.C.: Author. The full report is available
at
http://www.ncd.gov/newsroom/publications/2003/pdf/reclaimabridged.pdf
or
http://www.ncd.gov/newsroom/publications/2003/reclaimabridged.htm
V. Personal Stories
PERSONAL STORIES
Advocates can often make their point most powerfully through the
personal stories of people who have lived in institutions, in the words
of the person if at all possible, and/or of family members who are
pleased with life in the community for their loved one. Most convincing
are the stories of people who live in the state or locality of the
institution being considered for closure (or re-opening). We strongly
encourage the local collection of
such stories; listed below are some tips for “story-collectors,” with
an
emphasis on the stories of people with disabilities.
How Can Personal Stories be Used by Advocates?
People’s stories, or collections of stories, can be used in many ways.
They can be given to the media, with an invitation to meet with the
narrator(s). They can be given to legislators and policymakers. They
can be submitted as testimony during hearings and public forums; even
more powerfully, the people can give their testimony in person,
submitting their narratives (written or video) as part of their
testimony. They can be used to educate parents, people with
disabilities, and people in institutions about possibilities in the
community. For example, a woman in New York testified at a public forum
with her son with a disability, on the topic of a proposal to make
drastic
cuts in Medicaid-funded services. She asked the legislators present to
look
him in the eye and picture his future if his services were to be cut
back
to the extent proposed, and ended her testimony with a handout that
included
pictures of him and their family.
What Can Story Collections Look Like?
Most commonly, personal narratives are collected in written form, often
accompanied by photographs of the people who are featured. Some people
have written books about their lives (Johnson, 1999), and the stories
of
many others have been published in collections (Campaign for Freedom
Team,
2000; Hayden, 1997; Pratt, 1998). Increasingly, stories are being put
on
the World Wide Web (
http://www.selfadvocacy.com/Jerry_Smith_article.htm ), sometimes
with audio components. Story collections have also been captured on
videotape and even audiotape, as in the case of Roland Johnson’s book,
Lost in a Desert World, which is available on audiotape for
nonreaders and lovers of books-on-tape (Johnson, 1999).
How Can Advocates Collect Personal Narratives?
Some tips for collecting personal stories are:
- Find a variety of people whose stories should be told. You want
to show that everyone can live in the community, so feature stories by
people with a variety of challenging circumstances (medical,
behavioral, familial, etc.) as well as people without so many
challenges.
- Make sure the stories of people who don’t use speech are told.
Some such stories can be written by a person who uses augmentative,
assisted, or facilitated communication. Others can be told by family
members, friends, or direct support workers of people who don’t use
speech.
- In the narratives, there is no need to represent the community
as a utopia, perfect and without problems. The stories should reflect
people’s real lives.
- Many resources can be approached for the purpose of collecting
one or more personal stories, if you and your organization don’t have
the time to do so. Self-advocacy groups and their advisors are often
very willing to work on a project of this type, for example, as are
parent groups. University students and faculty members may wish
to collect stories (a
graduate student may wish to take this on as a research project, for
example).
People who work in direct support organizations may be interested in
collecting narratives of people with whom they work. And occasionally,
a journalist
may write an article about one or more people who once lived in an
institution.
Stories can be collected one by one, and this is the most common
approach. Or, a group of people can be called together (like a focus
group) to reply to interview and impromptu questions. The common themes
that emerge from their discussion can form the basis of an article or
paper that tells a collective story. The writer can elaborate on each
theme, using the words of a focus group member whenever possible.
The stories that follow were collected at a national self-advocacy
conference in Anaheim, California, held late in May, 2004. The people
who gave their stories were busy with many other things, but all of
them felt strongly about community living for all people. Afterwards,
the interviewers wished that we had asked more pointed questions about
why people felt as they do. In your own state, you can direct your
questions to issues that will have the greatest impact on decision
makers.
RESOURCES: PERSONAL STORIES AVAILABLE IN PRINT, ON THE
WEB, OR ON AUDIOTAPE:
Campaign for Freedom Team. (2000). Out of institution & you’re
home: Success stories. Plymouth Meeting, PA: Speaking for Ourselves.
Crossley, R., & McDonald, A. (1980). Annie’s coming out.
Australia: Penguin Books.
Hayden, M. F. (1997). Living in the freedom world: Personal stories
of living in the community by people who once lived in Oklahoma’s
institutions. Minneapolis: University of Minnesota, Research and
Training Center on Community Living, Institute on Community Integration
(UAP).
Hoyt, T. (1998). The right thing to do. Topeka: The
Kansas Council on Developmental Disabilities.
Johnson, R. (as told to Karl Williams) (1999). Lost in a desert
world: An autobiography. Plymouth Meeting, PA: Speaking for
Ourselves.
Pratt, J., Ed. (1998). On the outside: A look at two decades of
deinstitutionalization in West Virginia through the eyes of people with
developmental disabilities. Charleston, WV: West Virginia
Developmental Disabilities Planning Council.
Sienkiewicz-Mercer, R., & Kaplan, S. B. (1989). I raise my eyes
to say yes. New York: Avon Books.
PERSONAL STORIES
Collected in Anaheim, CA, May 2004
Paul Nichols, from Vermont
I lived in Brandon Training School. I was placed there when I was 3
years old because the doctor told my mother to do that. It wasn’t so
great.
You had to eat liver. I was there 14 years and got out in 1979. It was
a dump, not nice at all. My old teacher knows. We did have education
classes—reading, writing, ‘rithmetic. We had to share our bedroom with
other people. We all had to go to bed at the same time.
I live in Burlington now. I was doing fine until I had to have
surgeries on my hip. I live in my own apartment now, and it’s a lot
different than living in Brandon. I don’t eat liver now. I got a job at
the airport, at the observation tower. If it wasn’t for my support
people I couldn’t do what I do. I have my own van, and my support staff
drive it. I hire my support staff. I became my own guardian, too.
Champlain Vocational Services helps me with my job and they also give
me residential and community supports. I
do so many things now—I write for the Green Mountain Self-Advocates
newsletter, for example.
Rick Hodgkins, from Sacramento
I was placed in the California School for the Blind in 1992, when I
was 13 ½ years old. It was a school run by a partnership
between the CA Department of Educ and the CA Department of
Rehabilitation. While I was there, I gained a bunch of weight because
of medical conditions I
have, and I was put on a really restricted diet where I could eat only
one serving of everything, and I had no right to object to it. After 3
months, I had to sign away my rights in order to stay at the school. I
was
put under a conservatorship, as were all the other students at the
school.
I wasn’t allowed to say “no” or object to anything I didn’t like, or to
eat
when I was hungry. Whenever I did something wrong or had problems in
school,
I’d get yelled at. I lived in a dormitory, and same thing there—I got
yelled
at for things. People would yell their heads off. One teacher
thought
I was unteachable, and a lot of people thought I could not travel
independently.
Even when I was a grown man, between the ages of 18 and 20, I was still
treated
like a kid. At 20 years of age, I decided that that was enough, and I
got
a certificate of completion from the State Department of Education,
special
education curriculum, and left there. I wasn’t able to get my GED
because
it wasn’t provided in Braille.
I now have a job as a telemarketer. I make good money at that. I live
in Citrus Heights, CA. I live in a townhouse that I own. I rent a room
there to my grandfather. That was my decision. In the community, I have
my own choices. I may be going for my GED in an adult school this fall,
near where I live.
I have other disabilities besides blindness, so I have rights under
the Lanterman Act. I’d like to see the act changed so that people who
are
blind have the same rights as those with developmental disabilities. I
happen to know a researcher in San Francisco who may be able to help me
get the laws changed.
That school in Fremont still exists, to this day!
Frank Vinciguerra from Concord, New Hampshire
I was in Laconia State School from the time I was 12 years old. I was
treated like a prisoner. People were unhappy there. They were putting
us in straitjackets, throwing cold water on us, and giving us no
privacy.
People would get locked in a room. We lived in big dormitories. We
didn’t
get a chance to vote, or a chance to speak up for ourselves. They
didn’t
serve enough food to the patients, and they didn’t teach us how to be
independent, how to read and write, how to work at a job.
I was in one of the oldest buildings on the grounds. They didn’t think
we could learn anything like the brighter people could. After my mother
got me out of Laconia State School, I didn’t know much of anything, but
I lived with her and got a job in a grocery store. I had been in
Laconia State School 3 years. She got me out because she wanted to take
care of me and be
with me before she passed away. I wasn’t happy with the way Laconia
State School was run, and I wanted my mother to have a chance to take
care of me. After she passed away, I went to a group home to learn how
to be independent, because I didn’t know much about being
independent. Before I went to
Laconia State School, I was in an orphanage in Rochester (Rochester St.
Charles
Orphanage) for 8 years. I could not stay there any longer because you
had
to leave there when you were 12. In the institution, we didn’t get
enough
education and they didn’t teach us how to be more independent. The
state
of New Hampshire didn’t investigate how it was run.
Now I’m 57 years old. I’m a member of Knights of Columbus, and a
representative of the Self-Advocacy group of Carthage, and of People
First of New Hampshire. I also am a member of the Granite State
Independent Living Center and a member of the Democratic Party. I work
at Yankee Book Binding 2 days a week for 3 hours each day. I am
involved in the community a lot—Capital Center for the Arts and the
Chamber of Commerce. I’m learning how to read and write through a
literacy volunteer who comes to my apartment once a week to teach me. I
have a power of attorney who helps me make the right decisions so that
people don’t take advantage of me, and a conservator who helps me pay
my bills.
I live in my own apartment by myself, and I have someone who comes over
and
takes me shopping and cooks for me.
Roberta Gallant, Concord, New Hampshire
I live and vote in Concord, New Hampshire. On Oct. 27, 1956, my parents
admitted me to the Laconia State School and Training Center, a
residential placement for people with mental retardation, because of a
birth defect. For 25 years, I lived at the Laconia State School and
Training Center. I
hated leaving my mother and father’s house in Berlin, New Hampshire.
When
my mom and dad placed me in Laconia State School I became homesick. I
constantly cried, sobbed, and threw severe temper tantrums.
What I would like to talk about next is the bad things there. Many
other adult citizens and I lack some basic math, reading and writing
skills. While they and I were children living at the Laconia State
School and Training Center, New Hampshire deprived them and me of
opportunities to receive proper elementary and secondary school
education. Laconia State School itself also never offered private
tutoring, which we needed.
The staff people used to physically abuse me. The staff and other
residents always ignored and neglected me.
When I went out to the community on June 22, 1981, I left Laconia State
School and entered the community to live a better life.
Kimberly Horton, Sylmar CA
My parents divorced when I was 5 years old, and my father got custody
of the kids and me. I have two brothers, and because I have a physical
disability, my father, even at the age of 5, was questioning, “What am
I going to do when she becomes a teenager?” So he turned me over to the
custody of the state, and they suggested that I should be put in an
institution.
I was put in the first institution when I was 6, after two foster
homes. I lived in those homes while they were trying to find a place.
However, the institution I was in first was not chosen because it would
be best for me. They just stuck me in one. It was filled with unwanted
kids, runaways, kids with problems, disabled kids, kids who were in
trouble with the law, things like that.
When I was 8, 9 years old, I knew that there had to be someplace out
there that deals with someone like me. I explained to my social worker
that
I needed to be in a place for physically disabled kids. She said, “As
long
as you’re a minor, you do what I say.” I didn’t get out of that
institution until I was 17, and that was because I got a new social
worker then. My new
social worker shocked me by asking me what I wanted. I said, “But
you’re
the social worker!” She said, “I don’t care, you’re old enough to tell
me
what you want.” So I told her, “Get me out of here!” I didn’t care who
came
by my room or who heard it. And within a week, I was gone.
The experience was totally different in the second place. The second
institution dealt mostly with physically disabled kids. Some were both
physically
and mentally disabled. We had PT, OT, swimming, once a week, and some
kids,
I think I may have been one of them, had these things twice a week. I
didn’t like doing these things, but I knew I had to learn to do them if
I wanted to live on my own. Within 5 months, they had taught me how to
transfer
out of bed, go to toilet, and how to move my body. I was only there
from
age 17 to 21. The whole atmosphere was different. They did a panel on
me
with the different department heads, where they decided whether I
should
stay there and whether they could help me, and while they did that I
hung
out with the other kids. Within half an hour, I knew I wanted to stay
there
if I had to be anywhere. I kept saying, “I should have been here 10
years
ago!”
I remember calling my mother after I had been there two weeks, because
they did have a period where you were not supposed to have any contact
with anyone from the outside, so you could adjust. She was going crazy,
because she didn’t know where I was. I remember saying, “Don’t worry
about it,
Mom, it’s fine here.”
She was worried because she didn’t have custody and she didn’t know
what was going on. At the first place, there were numerous abuses. I
have
one major example: one time I had to go to the bathroom, but I had to
call
the nurse. They didn’t have railings, and they wouldn’t allow you to go
by yourself. They said, “You’re going to have to wait. You just went
two
hours ago.” The supervisor, who was buddy-buddy with the person who was
working with me that evening, said, “You’re gonna wait, and if you have
an accident, you’re going to go to bed early for a week, and you’re
going
to get a cold shower.” Finally I wet myself, and they punished
me.
I got that cold shower, and they left me in there for a long time. They
took away my therapy toys, and my legs atrophied. I’m just showing you
the
kinds of abuses that happened. They got away with so many abuses. I saw
them do terrible things to kids with mental disabilities, like flicking
the
lights to upset them and then punishing them. They didn’t have programs
except
when the state came in. We just watched TV and listened to the radio.
I went to a special school for the disabled in Ontario, California.
I loved it because it was my outlet, even though I had to be bussed
there. I had a favorite teacher who knew I didn’t like where I was
living. He did everything in his power to show me that even though I
lived like I did,
I could participate. He’d take me places even if the home wouldn’t give
me a ride. He taught me about baseball, and I became a big Dodgers fan.
He would let us watch baseball games.
I moved from Angelview when I was 21 to my own place, and that was very
scary. I got so paralyzed with fear that I got sick. On the first day
in my own apartment I passed out. They moved me into a group home, and
then
later into an apartment. I was in the first place from 1968-1979, and
in
Angelview from 1979-1984.
Now I am married, and I live in Sylmar with my husband Randy.
But I also want to tell you about my friend Barbara. She was nonverbal,
but we were such good friends that it was like, “If you want to find
Kimberley, go to Barbara’s room.” She’s still in a facility, in
Sacramento. She can’t get out because her mother is her conservator. I
saw her a few months ago, after 25 years. I hadn’t written to her,
because I knew she couldn’t write back. The only way that she
communicates is by looking up if she means, “Yes,” and down if she
means “No.” She is still in a place, and she should have the chance to
get out just like I did.
James R. Meadours, from Louisiana
Before I moved to Louisiana, I lived in Oklahoma. I lived in a
group home from 1987 to 1992, and that seemed to me like an institution.
When I was a young child, I never heard the word “institution” or any
word like group home until we moved to Oklahoma. I think that was
because my mother believed in me and my brother, and had confidence in
us, and
wanted us to believe in ourselves. My brother has a disability, too. My
mother passed away right after we moved to Oklahoma. We moved there in
September of 1983, and my mom was pregnant with my younger brother. She
died after she
had the baby, because the placenta went to her heart for 45 minutes.
She
had major brain damage and died.
My father remarried in 1985. A lot of people told my stepmother and
my father to put me in a group home, and after I graduated from high
school they put me in a group home.
I had a hard time with it because no one asked me what I thought about
going. They didn’t ask me what I wanted for myself, or ask me what’s
wrong with me, because I was still upset about my mom’s death. No one
took the time to take me to counseling or help me to deal with it. They
just put me in a group home instead. At the group home, I didn’t have
control over my life. The staff had the control.
I never learned about self-advocacy until then. I had some friends at
church, and one year we were watching the Super Bowl together, and I
said “Next year we’ll watch this at my place.” They thought I
meant at
the group home, but I said I wanted my own apartment. A week later my
friends helped me look for an apartment, searching for the right place,
and the
last place was a good match for me. It was very neat because three
weeks
later I got out.
The sad part was that my dad and my stepmom were totally against it
and thought I should keep living in the group home. They had small
expectations on me, and that was very hurtful for me. I proved…well, I
don’t like to
prove myself to anyone, but it is very hurtful when our parents think
we
cannot do anything for ourselves. And even our policymakers, when they
think
we can’t do anything for ourselves.
Stolen Lives Campaign Stories - May 2003
“Seeking Ways Out Together” (S.W.O.T.) Team
Titusville, New Jersey
I lived at Vineland State School for 15 years. I went there when I was
five years old. When I was a teenager they let me go to public high
school so I got my high school diploma. When I was 20 years old I was
moved to a group home. I knew that I wanted to live in my own place,
have a real job, learn new things, and be on my own. So I learned
everything at the group home, found a job as a janitor on my own, and
then moved into my first apartment with my friend Josephine.
Josephine & I just moved into a brand new apartment. I am no longer
a client. I travel all over the state by public transit working for
self-advocacy. I have a state job helping people with developmental
disabilities understand their health insurance rights. I keep busy
serving on boards, committees. Life changed for the better the day I
walked out of the institution. I had a dream. I am living my dream come
true. I like to tell people to have a dream & believe in yourself.
No matter what.
Barbara Coppens, Cherry Hill, NJ
**************************************************************************
When I was a very little girl I was put in Vineland State School
because my mother was sick and they said I was retarded. When I was 12
years old I went home to live with my mother and I went to public
school. But my mother was too sick to take care of me so I was sent to
Edward R. Johnstone Research & Training Center when I was 14 years
old. I lived there for five years.
Then they put me in a boarding home. They beat me there so I ran away.
When they found me they sent me to a group home. It was the best place
I had ever lived. I was glad to be there. I met my best friend Barbara
there. I learned how to take care of myself, how to keep house, cook,
shop. It
was the first time I had freedom.
Barbara & I have been roommates for years. We just moved into a
new apartment. I have a job. Barbara & I have been very active in
self-advocacy. We like to travel. We went to the TASH conference in
Boston in December. We are helping to start a NJ TASH.
People should not live in institutions. People should have a choice
where they want to live. Anybody with a disability can live out in the
community if they get the help they need. Listen to us President Bush.
Josephine Messina, Cherry Hill, NJ
**************************************************************************
I am a man with Cerebral Palsy. In my life I have lived in a boarding
house, a developmental center, and three group homes. I have been
restrained, starved, burnt with cigarettes, and abandoned for dead.
I use a wheelchair and I communicate via an electronic language board
called a liberator. Technology has changed my life. I now live in a
condominium and work with preschoolers.
I work as a volunteer to help other people move out of developmental
centers.
I have my freedom.
To President Bush I ask you if one of your daughters had a disability
would you put her in an institution? PLEASE, PLEASE help us get people
out of institutions and help get institutions out of our great nation.
Robert Fesel, Robbinsville, NJ
************************************************************************
In 1963 I was put away at the New Lisbon State School for Boys. My
mother didn't want to send me there but I have Cerebral Palsy and a lot
of brothers and sisters and she didn't have a choice. But she came to
visit me almost every Sunday. I saw a lot of abuse, sexual and
physical. The staff used to get the stronger boys to beat up on the
weaker ones. It happened to me. If you didn't do what they said there
were consequences.
When I got out I lived in a group home but now I live in my own
apartment. I wish my mother could see me. I make my own decisions and
the support staff is better than in the institution. I work, I like to
play bocce, and I
am very active in the self- advocacy movement in New Jersey.
I go back to institutions including the State School (now New Lisbon
Developmental Center), to help people get out. I wish someone could
have helped me when I was getting gout. That’s why I do it. I will do
it as long
as I am needed.
I want to tell President Bush that all people with disabilities need to
be in the outside world. No one really knows how institutions really
are, only the people who live there. If a person needs help it can come
to the person in the community.
Bernard King, Mapleshade, NJ
**************************************************************************
I was 16 years old when I was sent with my mother to live at the
Village for Epileptics near Princeton. My mother and I had seizures and
my father was told to put us there. She and I lived in different parts
of the village but we would meet at the bridge near the barn (my job
was to milk the cows) almost every day and I saw her at dances, on
visitor's days, and the such. My mother got a job as a live-in maid
with one of the staff and I didn't see much of her. Then she died.
I left in the late 1970s. I can’t remember exactly when.
My dream was to get my high school diploma, get a job and see America.
I did all those things and then some.
I retired from my job as a janitor when I became 84 years old. I have
seen the Pacific Ocean, traveled to Florida, Rhode Island, Virginia,
just to name a few and have been to Washington, D.C. several times to
testify on behalf of people with disabilities. I'll be going to
Washington, D.C. in May for MiCASSA.
I want to tell President Bush to sign a law to close all institutions.
That's my dream now.
John Kover, Barrington, NJ
**************************************************************************
I was sent to live at Edward R. Johnstone Training & Research
Center because I use a wheelchair and I am blind. My mother didn't know
what it was like in an institution. When the state announced they were
going to close Johnstone I wrote to the governor and told him to keep
it open because I didn't know what it was going to be like to live on
the outside and I was scared. So were my friends. My mother had died
and a lot of the staff told us scary things about the community. But
they closed Johnstone and now I
am glad!
In the institution you couldn’t say how you felt about things, you had
to do what you were told, you couldn’t speak up. I had friends who were
handcuffed and locked up for doing those things in the institution.
Now I live in my own condo with my housemate. I have good support to
help me. I work at a copy center and I travel. I love to travel and
visit new places. I make my own decisions. I vote, I worship. In 2001 I
testified in Washington D.C. at the New Freedom Initiative Hearings and
this past January I testified at our State House against restraints and
aversive treatment for institutionalized children and adults. I would
never put a member of my
family in an institution. I will never go back.
Ed Palermo, Robbinsville, NJ
**************************************************************************
I live at three institutions. When North Princeton Developmental Center
closed in 1998 I moved into an apartment but I didn’t like living alone
so now I share a home with two housemates. It was hard adjusting to the
community. I went through a lot of changes. They had misdiagnosed me in
the institutions. I got help learning how to cook and houseclean when I
moved into the house with Robert & Chris. Now I cook for all of us.
Right now I am learning how to manage my own medication. I have a lot
of
medicine to take.
I do volunteer work. I have made friends and I go to church, which is
something I couldn’t do in the institutions. I have freedom. I can go
where I please. In an institution they keep you locked up.
The institution was not good for me. There were mean people there. You
feel like a prisoner.
I say to President Bush – “No one: should have to live in an
institution. Everyone deserves a chance to live in the community. All
the institutions should be closed.”
Darlene Fulton, Hammonton, NJ
**************************************************************************
When I was a teenager in Totowa State School for Girls, now called
North Jersey Developmental Center. I have 3 brothers and 2 sisters and
my mother was sick and they said I was retarded so they put me away. I
was badly treated, beat up by the staff and other girls, and accused
and punished for things I didn't do. I was there for five years.
I say that getting out and living in the community is 100% good. I have
made good friends. I am happy to be free. I learned to be independent.
I got to take care of my mom when she was sick and dying. Last year I
went
to my family reunion. It was great.
I became a self-advocate to help others. I help other people get out of
institutions. I tell them they will do new things, make new friends and
have more control over their lives out where it is free. I am happy. I
have my apartment. I have my job. I have my cat. I have my boyfriend.
If I could talk to President Bush I would say to him – “Free my
brothers and sisters.”
Adelaide Daskam, Elizabeth, NJ
**************************************************************************
Hi! I’m Todd Leroy Emmons. When I was about 13 years old I went to live
at New Lisbon State School in New Lisbon, NJ. When I was 15 years old I
went to Edward R. Johnstone Training & Research Center. I helped
take
care of the blind boys. I left Johnstone on June 16, 1976. Johnstone
closed
for good in 1991.
Since I have been living in the community I got my high school diploma,
I am very active in the church, Special Olympics, self-advocacy, and I
have a good job at the mall.
Thank you very much for listening to me.
Todd Emmons, Mapleshade, NJ
**************************************************************************
There are seven developmental centers still open in New Jersey. In my
lifetime I have lived in five of those seven institutions. I was
institutionalized when I was 2 years old. My mother couldn’t take care
of me and they said I was retarded. I was sexually abused when I was a
little girl in the developmental center. I know they abuse and kill
people in institutions and the food is terrible. I have been put in
straightjackets and tied down. While I was
in North Jersey Developmental Center I found out about self-advocacy.
Steve Gold & Tim Cook came and helped me and some other women get
out and
move into a group home but they sent me back because I had behaviors.
I finally got out of Vineland Developmental Center in 1999. I now live
in a supervised apartment. I have my privacy, I can watch TV when I
want, and buy my own food. I am a member of a group of self-advocates
that help other people get out of institutions. Self-advocacy helped me
to understand that I have rights and I want to help other people living
in institutions understand that they have rights!
Bonnie Schuller, Vineland, NJ
When people think of institutions, they often think of big ones like
Fernald in Massachusetts or Rosewood in Maryland. However, I have
learned and know in my heart that I was sent to an institution by my
parents in the mid eighties. First of all, I want to say that my
parents are so wonderful to me, and they would do almost anything for
me. However like most parents they listened to the professionals when
it was suggested that I should go to Bancroft, a private institution in
New Jersey.
I stayed at Bancroft for nine years. Yes, most of that time I was in
the community, but the first six months I was in what I called a
“mini-institution.” You entered this place by a long driveway and at
the bottom was a cluster of 10-15 small houses. I lived with two other
people, but all of my neighbors were people with disabilities. I
remember one night when I came home, my roommate threw out my dinner
because I was ten minutes late from my job. When I first got to this
place, my parents and the staff at Bancroft called this place “the
community.” I ask you: does this sound like a community that you
would like to live in?
I wrote this because I wanted you as the reader, to know that there
are many different kinds of institutions. The big public ones like
Fernald,
and smaller private ones like Bancroft. I think the definition of an
institution is how the person defines one.
Right now, I live in Rockville, Maryland working for The Council on
Quality & Leadership doing training and consultation for
organizations
around the issue of advocacy and how people with disabilities should
have
input in their services and how the organizations should listen to
them.
My fiancée and I both get the services that we both need and
want.
Liz Obermayer
Quality Consultant
VI. Resources
a. Packets Prepared by
Groups Advocating For Institution Closure
b. Web Sites
c. Bibliography
This section contains three different types of resources for advocates:
- Packets prepared by groups advocating for institution closure.
We include these as examples of the kinds of information your
organization may want to prepare. As you can see, the packets typically
are made up
of one-page fact sheets on various issues that always come up in
debates
about institution closure. You may use the information in this tool kit
to create your own set of fact sheets.
- A list of web sites that provide more information and resources
for your advocacy for institution closure.
- A bibliography of studies, articles, chapters, newsletters,
policy briefs, etc. that are included in or that shed light on the
issues covered in this tool kit. For other references, see the articles
included in the tool kit
Packets Prepared by Groups Advocating for
Institution Closure:
WEB SITES
This list includes web sites that have been listed in different
sections throughout this tool kit as well as web sites that can provide
more
information and resources for your advocacy for institution closure.
Advocacy Center, National Down Syndrome Society
http://www.ndss.org/content.cfm?fuseaction=AdvCen&article=79
Provides many advocacy tools for anyone’s use, including tips for
advocates, organizing coalitions, interacting with policymakers, a
guide
for change agents by Bobby Silverstein, former principal advisor to
Senator Tom Harkins and now Director of the Center for the Study and
Advancement of Disability Policy (CSADP).
Advocacy Training Materials from The Public Policy
Collaboration
http://www.thearc.org/ga/trainmat.html
This is the training page of The Arc, and covers how a bill becomes law
(national), how to be an effective legislative advocate, tips on
writing or emailing a member of Congress, how to have a meeting with
a legislator or their staff, general tips on working with the media,
and how to write a letter to the editor of your local paper.
American Association on Mental Retardation (AAMR)
http://www.aamr.org
Explore AAMR, whose mission is: AAMR promotes progressive policies,
sound research, effective practices, and universal human rights for
people with intellectual disabilities.
Americans with Disabilities Act/Olmstead Decision, Centers for
Medicare & Medicaid Services
http://www.cms.hhs.gov/olmstead/default.asp
The Centers for Medicare and Medicaid Services are the parts of the US
Department of Health and Human Services that deal with Medicare and
Medicaid. This site provides an official summary of the Olmstead
decision, an invitation to give input or ask questions about the
decision, letters that have been sent to state Medicaid Directors about
the Olmstead decision, and links to other government sites related to
the Olmstead decision.
The Arc of the United States
http://www.thearc.org/
Explore the site of The Arc of the United States, whose mission is: The
Arc of the United States works to include all children and adults with
cognitive, intellectual, and developmental disabilities in every
community. Click on Information, then Governmental Affairs, and then
Advocacy Center for a host of advocacy tools.
The Arc of the United States Media Guide
http://capwiz.com/thearc/dbq/media
Another useful media guide for journalists.
Assistance with Integrity: The Search for Accountability and
The Lives
of People with Developmental Disabilities
http://thechp.syr.edu/!integri.pdf
Download this report listed as a resource in the Choice section.
Become an Instant Op-Ed Star! How to Write Opinion Articles
that Editors
Will Actually Use By Mary Johnson
http://www.raggededgemagazine.com/mediacircus/opedtips.htm
Mary Johnson provides great tips on writing op-ed pieces. You may
also want to explore the whole Ragged Edge Magazine site by clicking
on “About Us” at the bottom of the page.
Behavioral Outcomes of Deinstitutionalization for People with
Intellectual Disabilities: A Review of Studies Conducted Between 1980
and 1999. Policy Research Brief, 10(1). Minneapolis: University of
Minnesota, Institute on Community Integration
http://ici.umn.edu/products/prb/101/default.html
Get an online version of the Policy Research Brief contained in
the Quality of Life Outcomes in the Community section.
BEYOND THE AP STYLEBOOK: Language and Usage Guide for
Reporters and Editors
http://www.raggededgemagazine.com/mediacircus/styleguide.htm
Provides a style guide for journalists.
Capstones Summer 2003 Issue
http://www.thecouncil.org/council/about/Capstones/summer03.pdf
This is a link to the Summer 2003 issue of Capstones, the
newsletter of The Council on Quality and Leadership.
Center for an Accessible Society
http://accessiblesociety.org/
Want to know about the ADA, census data on disabilities, and many
other disability issues? This site will answer most of your questions.
Center for Health Care Strategies (CHCS)
http://www.chcs.org/info-url_nocat3961/info-url_nocat_show.htm?doc_id=206314
Since 1995, the Center for Health Care Strategies (CHCS) has strived to
continuously improve the quality of health and health related services
for beneficiaries of our nation's health coverage safety net--Medicaid
and the State Children's Health Insurance Program. This page lists and
discusses some of their Olmstead work.
Center for the Study and Advancement of Disability Policy
(CSADP)
http://www.disabilitypolicycenter.org/
Web site of The Center for the Study and Advancement of Disability
Policy (CSADP). CSADP provides public education, leadership development
and training, technical assistance and information dissemination, and
conducts action-research and analysis of public policy issues affecting
individuals with disabilities and their families.
The Center on Human Policy
http://thechp.syr.edu
Web site of the Center on Human Policy.
Centers for Medicare & Medicaid Services
http://www.cms.hhs.gov/medicaid/icfmr/default.asp
This is the CMS web site for the Intermediate Care Facility for People
with Mental Retardation Program (ICF/MR).
A Chance to be Made Whole: People First Members Being
Friends to Tear Down Institution Walls by People First of Tennessee
http://thechp.syr.edu/pl1st.htm
Abbreviated article by People First of Tennessee on their work on
getting other People First members out of institutions.
Closing Brandon Training School: A Vermont story
http://thechp.syr.edu/brandon.htm
Web version of the full report on the closing of Brandon Training
School, listed as a resource in the State Strategies section.
Closing the Gap By Zena Naiditch
http://www.equipforequality.org/equalizer_2001closing.html
The newsletter of Illinois’ Equip for Equality covers ADA and Olmstead
issues in Illinois, among other things.
CLOSING INSTITUTIONS/SUPPORT FOR COMMUNITY LIVING
http://www.peoplefirstofcanada.ca/archive/pfc/2.html
Resolutions by People First of Canada having to do with institution
closure and supporting people to live in the community.
Closing the State Centers for the Developmentally Disabled
http://www.dawninfo.org/advocacy/issues/state_centers.cfm
This page of the Disability Advocates: Wisconsin Network (DAWN) gives
the People First Wisconsin position papers on institution closure plus
a great deal of information and research about the topic.
Closing State Institutions, The Center for Community Solutions
http://www.communitysolutions.com/store/item.asp?ITEM_ID=78&DEPARTMENT_ID=38
http://www.communitysolutions.com/images/upload/resources/sbmissue44.pdf
Resources by the Center for Community Solutions, an Ohio-based
nonprofit focused on policy and system reform.
Closure By Dave Seaton
http://www.winfieldcourier.com/Closure/closure01.html
The closing of the Winfield State Hospital left dozens of
developmentally disabled individuals without a home. This is the story
of how the movement that closed Winfield came to Kansas and how these
individuals found new homes in the Winfield area.
The Community Imperative
http://thechp.syr.edu/community_imperative.html
Endorse, on the web, the Center on Human Policy’s Community
Imperative (found in the Position Statements section); see who else
has endorsed this national statement of principles.
Community Integration/Medicaid
http://www.napas.org/I-3/I-3-D/community%20integration-medicaid%20home.htm
Contains information about compliance with Olmstead nationwide;
includes the text of the decision and much, much more.
Congress.org Media Guide
http://congress.org/congressorg/dbq/media/
Congress.org is a public service of an organization called Capitol
Advantage. This page allows one to find media outlets anywhere in the
country.
Costs and outcomes of community services for persons with
intellectual and developmental disabilities. Policy Research Brief,
15(1). Minneapolis: University of Minnesota, Institute on Community
Integration
http://ici.umn.edu/products/prb/151/default.html
Download the Policy Research Brief on costs and outcome of
community services.
The Council on Quality and Leadership
http://www.thecouncil.org
The web site of the Council on Quality and Leadership, which provides
accreditation, monitoring, evaluation, training, and consultation to
human service organizations.
Deinstitutionalization--Keep Focused on How and When, Not Why
http://www.thearclink.org/news/article.asp?ID=610
An article that originally appeared in the Durham Herald-Sun in
July, 2003, written by a parent.
Deinstitutionalization of Persons with Developmental
Disabilities: A Technical Assistance Report for Legislators
http://www.ncsl.org/programs/health/Forum/pub6683.htm
The web page for the report excerpts in the State Strategies section.
The web site of NCSL, the National Conference of State Legislatures,
contains a search engine. Try searching with the key words “Olmstead”
or “Long Term Care” for other reports of use to advocates and state
officials.
Developmental Disabilities Planning Institute
Provides access to research and progress reports on the closure of two
New Jersey institutions:
Background on Closure of North Princeton Developmental Center (
http://www.ddpi.njit.edu/ddpi-publications-state-op.htm
) and Background on Closure of E.R. Johnstone Research and Training
Center: (
http://www.ddpi.njit.edu/ddpi-publications-state-op2.htm
).
Escape! from Tennessee's DD centers
http://www.mouthmag.com/peoplefirst.htm
A Mouth Magazine article about how People First of Tennessee
filed and won lawsuits to close institutions in Tennessee, and how they
involved the people living in the institutions in “their own
liberation,” in the words of PFT advisor Ruthie May Beckwith.
Essential Lifestyle Planning
http://www.elpnet.net/
The site of the Essential Lifestyle Planning network gives information,
news, and articles about Essential Lifestyle Planning.
Family Futures Project
http://www.family-futures.org.uk/index.html
Click on “Planning Tools” for more information on using planning tools
such as “Essential Lifestyle Planning,” “Person-Centered Planning,”
“PATH,” or “MAPS”
Key Principles of Person Centred Planning, The Family Futures
Project
http://www.family-futures.org.uk/Introduction%20to%20PCP.html
The title says it all—this is a very nice description of the key
principles of person-centered planning, prepared by the Edinburgh-based
project
of the Scottish Human Services Trust, Family Futures. Visit other parts
of their website to learn more about what is going on in Scotland.
IMPACT: Feature Issue on Behavior Support for Crisis
Prevention and Response, 14(1). Minneapolis: Institute on Community
Integration, University of
Minnesota
http://ici.umn.edu/products/impact/141/default.html
Download the IMPACT Feature Issue on Behavior Support.
IMPACT: Feature Issue on Consumer-Controlled Budgets and
Persons with Disabilities, 17(1). Minneapolis: Institute on Community
Integration, University of
Minnesota
http://ici.umn.edu/products/impact/171/default.html
Download the IMPACT Feature Issue on Consumer-Controlled Budgets
and Persons with Disabilities.
Issues and Challenges in Developing Individualized Supports By
John O’Brien
http://thechp.syr.edu/nysbisch.htm
Download the article backing up the Planning for Quality Community
Services section.
Intermediate Care Facility for People with Mental Retardation
Program (ICF/MR), The Centers for Medicare & Medicaid Services
(CMS)
http://www.cms.hhs.gov/medicaid/icfmr/default.asp
The web site of the ICF/MR Program Information CMS.
The Journalist’s Toolbox, Disability/Accessibility Resources
http://www.americanpressinstitute.org/content/3738.cfm
Information on disability and accessibility for journalists.
Listen to Me!
http://www.allenshea.com/listentome.html
Provides a workbook for planners.
The Media Edge: Feeding the Beast By Jennifer Burnett
http://www.raggededgemagazine.com/0199/d199me.htm
A Ragged Edge Magazine article about the media and getting
your story covered, the way you’d like it covered.
National Association of Councils on Developmental Disabilities
(NACDD)
http://www.nacdd.org/
NACDD’s site provides positions, information, links, and more.
National Center on Disability & Journalism
http://www.ncdj.org/index.php
The web site of the National Center on Disability and Journalism
(NCDJ), an independent, impartial journalism organization whose mission
is to educate journalists and educators about disability reporting
issues in order to produce more accurate, fair and diverse news
reporting.
NCDJ News
http://www.ncdj.org/newsletter.php
Provides online versions of the NCDJ News.
NCDJ Style Guide
http://www.ncdj.org/styleguide.php
Provides a style guide for journalists.
National Conference of State Legislatures (NCSL) Olmstead
Publications
http://www.ncsl.org/programs/health/Onews.htm
Read NCSL’s publications on Olmstead and long term care for information
on how and what the states are doing.
National Down Syndrome Society’s Advocacy Center
http://www.ndss.org/content.cfm?fuseaction=AdvCen.Main
This section of the NDSS web site has lots of great information for
advocates, including tips for advocates, organizing coalitions,
interacting with policymakers, and others.
Office for Civil Rights, New Freedom Initiative – Disability,
Most Integrated Setting - The Olmstead Decision
http://www.hhs.gov/ocr/mis.htm
Read the government’s positions on the Olmstead decision, including
press releases, grant awards, and much more.
Olmstead: Reclaiming Institutionalized Lives, National Council
on Disability
http://www.ncd.gov/newsroom/publications/2003/reclaimlives.htm
Get the full report of the NCD report on the Olmstead decision.
OLMSTEAD v. L. C. - Supreme Court Collection, Legal
Information Institute, Cornell University
http://supct.law.cornell.edu/supct/html/98-536.ZS.html
Cornell Law School’s Legal Information Institute presents legal
information on the Olmstead decision.
On Choice by Steve Taylor
http://thechp.syr.edu/on_choice.htm
On-line version of the article “On Choice” by Steve Taylor reprinted in
the Choice section.
People First of Oregon, Fairview: The Closing Chapter
http://www.open.org/~people1/Fairview/closingcontents.htm
People First of Oregon talks about the closing of Fairview.
Person Centered Planning and Perversion Prevention By Michael
W. Smull and Susan Burke Harrison
http://www.allenshea.com/perversion.html
A great article on prevention of perversion of person-centered
planning. Describes ways in which what is called “person-centered
planning” is
misused, and ways in which the process should be implemented.
Public Policy in Action: The Action Starts Here!!
http://www.tash.org/govaffairs/
This is the web site of TASH’s Governmental Affairs division and has
links to help you contact your Senator and/or Representative, along
with links to Senate and House Committees that make decisions on policy
affecting people with disabilities.
Quality Mall – Closing Institutions Store
http://www.qualitymall.org/directory/dept1.asp?deptid=32
A great site for finding materials on or supporting institution
closure. Part of the Quality Mall, a site offering person-centered
services supporting people with developmental disabilities.
Ragged Edge Magazine Online
http://www.raggededgemagazine.com/
Online version of Ragged Edge Magazine.
Remembering with Dignity: Leadership Through Activism By Jerry
Smith
http://www.selfadvocacy.com/Jerry_Smith_article.htm
The story of how self-advocates in Minnesota obtained a $200,000
legislative appropriation in 1997 to begin marking 10,000 graves of
people buried in state hospital cemeteries, collected oral histories of
people who
had lived in Minnesota institutions, and did much more to remember with
dignity.
Residential Services for Persons with Developmental
Disabilities: Status
and Trends Through 2002, University of Minnesota, Research and Training
Center on Community Living
http://rtc.umn.edu/risp02/risp02.pdf
Download the 203-page report whose executive summary is given in the
section on Who are in the Institutions Today? Gives much data and
analysis about state residential institution and community services.
Also visit http://rtc.umn.edu/risp/index.html
which leads to much of the RTC’s data and information on community
living. A rich resource for advocates.
Resources for Reporters
http://www.iod.unh.edu/reporters-room.html
The Institute on Disability’s guide for reporters; well worth visiting.
Revisiting Choice – Part 1 & Part 2 - By Michael Smull
http://www.elpnet.net/choice.html
The web site for the article included in the Choice section.
Safeguards [Policy Bulletin No. 3]
http://thechp.syr.edu/bullsafe.htm
The Center on Human Policy’s bulletin on Safeguards is on the web.
Self-Advocates Becoming Empowered
http://www.sabeusa.org/
Web site of SABE, Self-Advocates Becoming Empowered.
State Long-Term Care: Recent Developments and Policy
Directions 2003 Update – National Conference of State Legislatures
(NCSL)
http://www.ncsl.org/programs/health/forum/ltc/LTC_draft.htm
Download the NCSL report that examines the specific measures taken by
each state in their efforts to reform long-term care.
The State of the States in Developmental Disabilities
http://www.cu.edu/ColemanInstitute/stateofthestates/
Download the new State of the States in Developmental Disabilities
Study Summary 2004 (
http://www.cu.edu/ColemanInstitute/stateofthestates/summary_2004.pdf
), and examine profiles of disability services in the US, state by
state.
Steve Gold’s Treasured Nuggets of Information
http://www.stevegoldada.com/
Steve Gold is an attorney in Philadelphia who shares tools on how
to enforce the ADA with an emphasis on the topics of housing, medical
assistance/Medicaid, nursing homes, and education.
Stuff to know about... The Olmstead Decision, Freedom
Clearinghouse
http://www.freedomclearinghouse.org/know/olmstead.htm
Check this site for great ideas of things to do to implement the
Olmstead decision.
TASH
http://www.tash.org
The web site of TASH, which supports the inclusion and full
participation of children and adults with disabilities in all aspects
of their communities as determined by personalized visions of quality
of life.
Testimony to: The Special Committee on Appropriations/Ways
and Means
Senator Morris, Chair, Representative Neufeld, Vice Chair. September
22nd, 2003
http://www.kacil.org/tm9-22-03.htm
Provides some compelling testimony in favor of closing the remaining
two Kansas institutions, including studies, moral arguments, and more.
Top 10 Arguments Against Closing an Institution
http://www.open.org/~people1/articles/inst_arguments_against_closing.htm
People First of Oregon gives answers to the top arguments against
institution closure.
Towards Person Centred Approaches
http://www.valuingpeople.gov.uk/pcp.htm
This is a site of the Valuing People Support Team in the United
Kingdom. It describes several different person-centered planning
approaches.
The University of Minnesota's Research and Training Center on
Community Living
http://rtc.umn.edu/
The home page of the RTC on Community Living.
What can we count on to make and keep people safe?
Perspectives on creating effective safeguards for people with
developmental disabilities
http://thechp.syr.edu/CountOn.pdf
Web site of the document reprinted in the Safeguards section.
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VII. Index
a. Author Index
b. Topical Index
AUTHOR INDEX
(Index of Authors of Documents Backing up Sections
Listed in the Table of
Contents)
Anderson, L. see FAMILY ISSUES
Bogdan, R. see STATE STRATEGIES
Braddock, D. see TRENDS IN INSTITUTION CLOSURE; see
WHAT IS AN INSTITUTION?
Cheek, M. see ALL PEOPLE CAN BE SUPPORTED IN THE
COMMUNITY
Community Integration/Medicaid see OLMSTEAD AND OTHER
LEGAL RESOURCES
Coucouvanis, K. see COST/ECONOMIC ISSUES; see TRENDS
IN DEINSTITUTIONALIZATION; see WHO ARE IN THE INSTITUTIONS TODAY?
Croser, M. D. see COST/ECONOMIC ISSUES
Daniels, R. see QUALITY OF LIFE OUTCOMES IN THE
COMMUNITY
Davis, D. see STATE STRATEGIES
Eidelman, S. M. see COST/ECONOMIC ISSUES
Federal definitions of “ institution” see WHAT
IS AN INSTITUTION?
Fitzgerald, T. see ALL PEOPLE CAN BE SUPPORTED IN THE
COMMUNITY
Fox-Grage, W. see STATE STRATEGIES
Gardner, J. F. see COST/ECONOMIC ISSUES
Gehshan, S. see STATE STRATEGIES
Hemp, R . see TRENDS IN
INSTITUTION CLOSURE
Hulgin, K. see SAFEGUARDS; see STATE STRATEGIES
Jesien, G. see COST/ECONOMIC ISSUES
Kim, S. see QUALITY OF LIFE
OUTCOMES IN THE COMMUNITY
Lakin, K. C. see ALL PEOPLE CAN BE SUPPORTED IN THE
COMMUNITY; see COST/ECONOMIC ISSUES; see FAMILY ISSUES; see QUALITY OF
LIFE
OUTCOMES IN THE COMMUNITY; see TRENDS IN DEINSTITUTIONALIZATION; see
TRENDS
IN INSTITUTION CLOSURE; see WHO ARE IN THE INSTITUTIONS TODAY?
Larson, S. A.,. see FAMILY ISSUES; see QUALITY OF
LIFE OUTCOMES IN THE COMMUNITY; see WHO ARE IN THE INSTITUTIONS TODAY?
Lyle O’Brien, C. see SAFEGUARDS
Moseley, C. see STATE STRATEGIES
National Council on Disability see OLMSTEAD AND OTHER
LEGAL RESOURCES
Nelis, T. see CHOICE
Obermayer, L. see CHOICE
O’Brien, J. see PLANNING FOR QUALITY COMMUNITY
SUPPORTS; see SAFEGUARDS
Parish, S. see TRENDS IN INSTITUTION CLOSURE
Pietrangelo, R. see COST/ECONOMIC ISSUES
Pomeranz, A. see TRENDS IN INSTITUTION CLOSURE
Rizzolo, M. C. see TRENDS IN INSTITUTION CLOSURE
Samis, M. see QUALITY OF LIFE OUTCOMES IN THE
COMMUNITY
Prouty, R. W. see COST/ECONOMIC ISSUES; see TRENDS IN
DEINSTITUTIONALIZATION; see TRENDS IN INSTITUTION CLOSURE; see WHO ARE
IN THE INSTITUTIONS TODAY?
Polister, B. see TRENDS IN DEINSTITUTIONALIZATION
Schwartz, D. B. see SAFEGUARDS
Shea, J. R. . see COST/ECONOMIC ISSUES
Shoultz, B. see STATE STRATEGIES
Smith, G. see WHO ARE IN THE INSTITUTIONS TODAY?
Smull, M. W. see ALL PEOPLE CAN BE SUPPORTED IN THE
COMMUNITY; see CHOICE
Stancliffe, R. J. . see COST/ECONOMIC ISSUES
Swenson, S. see FAMILY ISSUES
Taylor, S. J. see CHOICE; see COST/ECONOMIC ISSUES;
see SAFEGUARDS; see STATE STRATEGIES
Walker, P. see STATE STRATEGIES
Abuse and neglect see WHAT’S WRONG WITH INSTITUTIONS?
AAMR seeSTATEMENT OF PRINCIPLES; POSITION STATEMENTS
Arc of the United States, The see STATEMENT OF
PRINCIPLES; POSITION STATEMENTS
Arc of Maryland, The see POSITION STATEMENTS
Assistive technology, lack of access to see WHAT’S
WRONG WITH INSTITUTIONS?
Center on Human Policy see STATEMENT OF PRINCIPLES;
see POSITION STATEMENTS
Challenging behavior see ALL PEOPLE CAN BE SUPPORTED
IN THE COMMUNITY
Civil rights see WHAT’S WRONG WITH INSTITUTIONS?
Close the Doors: Campaign for Freedom see RESOURCES
Community capacity see WHAT IS THE COMMUNITY?
Community living see WHAT IS THE COMMUNITY?; see ALL
PEOPLE CAN BE SUPPORTED IN THE COMMUNITY; see QUALITY OF LIFE OUTCOMES
IN
THE COMMUNITY
Community Imperative, The see POSITION
STATEMENTS
Cost comparisons see COST/ECONOMIC ISSUES
Criminal justice system, people involved with see ALL
PEOPLE CAN BE SUPPORTED IN THE COMMUNITY
Cross Disability Rights Coalition (CDRC) see
POSITION STATEMENTS
Dehumanization see WHAT’S WRONG WITH INSTITUTIONS?
Disability issues and the media see WORKING WITH THE
MEDIA
Dually diagnosed individuals see ALL PEOPLE CAN BE
SUPPORTED IN THE COMMUNITY
Education, lack of access to see WHAT’S WRONG WITH
INSTITUTIONS?
Governor and Executive Branch, work with to close
institutions see STRATEGIES FOR ADVOCATES
Human rights see WHAT’S WRONG WITH INSTITUTIONS?
Individualization in services, lack of see WHAT’S
WRONG WITH INSTITUTIONS?
Institutional facility use conversion see STATE
STRATEGIES
Legislature, work with to close institutions see
STRATEGIES FOR ADVOCATES
Letters to the Editor & Op-Ed pieces see
STRATEGIES FOR ADVOCATES
Maryland Developmental Disabilities Coalition see
RESOURCES
Maryland Developmental Disabilities Council see
POSITION STATEMENTS
Medical needs, complex see ALL PEOPLE CAN BE
SUPPORTED IN THE COMMUNITY
Mid-Atlantic Chapter of TASH see POSITION STATEMENTS
Mortality studies see SAFEGUARDS
Older people with developmental disabilities see ALL
PEOPLE CAN BE SUPPORTED IN THE COMMUNITY
People First Wisconsin see RESOURCES
Parents see FAMILY ISSUES
People On the Go of Maryland see POSITION STATEMENTS
Person-centered planning see PLANNING FOR QUALITY
COMMUNITY SUPPORTS FOR MOVING INTO THE COMMUNITY
Psychiatric and developmental disabilities see ALL
PEOPLE CAN BE SUPPORTED IN THE COMMUNITY
Public forum, on institutional closure or other
issues see STRATEGIES FOR ADVOCATES
Regulations, the limitations of see SAFEGUARDS
Newspaper reporters and editorial boards, work with
see WORKING WITH THE MEDIA
Segregation and isolation from the community see
WHAT’S WRONG WITH INSTITUTIONS?
Self-Advocates Becoming Empowered see POSITION
STATEMENTS; see RESOURCES
State government, work with, to close institutions
see STRATEGIES FOR ADVOCATES
Social Security Act Section 1905(d) see WHAT IS AN
INSTITUTION?
Web-based advocacy materials see STRATEGIES FOR
ADVOCATES
Workforce issues see STATE STRATEGIES
Acknowledgements/Contributors:
Doreen Croser
Steven M. Eidelman
Steve Gold
Judith Gran
Phyllis Guinivan
Charlie Lakin
Liz Obermayer
Bonnie Shoultz
Sue Swenson
Steve Taylor
Pam Walker
Nancy Weiss
Rachael Zubal-Ruggieri
We would also like to thank the The Arc’s Community Imperative Task
Force for their support:
Richard Garnett, Chair
Janet Albert-Herman
Gail Ford
Sam Givan
Tony Paulaski
Cliff Poetz
Ed Worff
Liz Wuest
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.
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