"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