A wonderfully interesting question, particularly the issue of the use
of ‘prime real estate’ for the benefit of people with disabilities
(PWD). I work at an Independent Living Center where
deinstitutionalization of PWD is a prime goal.
Your question refers to establishing group homes, which are generally
used for people with developmental or mental disabilities. However,
as the issue of deinstitutionalization covers all categories of
disabilities, I thought I’d briefly address other types as well as
there is cross over on issues. In addition, your question referred to
‘many countries’. I’ll start first with the USA, if that’s OK.
There is evidence of deinstitutionalization success...
According to DeInstitutionalization in America,
< http://www.thearclink.org/news/article.asp?ID=390 >
“More than 20 detailed studies have been conducted across the country
about what happens to people when they leave large congregate
settings. All of these studies tell the same story. People with
disabilities, including people with severe and multiple disabilities,
show increases in independence, fewer problem behaviors, increases in
choice making, increases in relationships with people without
disabilities and increases in employment and earnings.
In addition, these studies show increases in participation in
community activities. Also, neighbors develop positive attitudes about
their neighbors with disabilities. And, over time, the costs are about
the same and often less in the community than in large settings.”
It is essential, however, that the necessary supports be available to
people with disabilities. In the current US economy, supports for
people with disabilities unfortunately are being reduced as tax
revenues go down. Indeed, in Kansas, where I live, significant cuts
have occurred in Social and Rehabilitative Services (SRS), Home and
Community Based Services (HCBS), and Frail and Elderly (FE) service
budgets, etc. so that people who could live in the community with
varying degrees of assistance are being faced with having to move into
nursing homes - a usually far more expensive alternative - because
they cannot live solely on their own. Certainly a case of penny
wise-pound foolish
Do note, however, that nursing homes are seen as the current
alternative. There is no push for a return to large residential
institutions in the US for people with disabilities for the same
reason they were closed in the first place: human rights and money.
However, many young and middle-aged people with physical and mental
disabilities are forced to live in nursing homes because of limited
financial resources and even more limited community-based options.
This is simply institutionalization on a smaller scale and no more
appropriate.
But also there is great evidence - at least in the US - that
deinstitutionalization was not the panacea it was thought by many to
be back when...
“There’s No Place Like Home: Housing For The Most Vulnerable
Individuals With Severe Mental Disabilities”, addresses the issue of
deinstitutionalizing people with several mental disabilities. <
http://moritzlaw.osu.edu/lawjournal/RUBEY.htm >
Unfortunately people with mental disabilities are more likely to face
more discrimination and have a harder time in the community than do
people with physical disabilities.
Homelessness has been a huge problem in the US as people with mental
disabilities were moved from institutions back into the community. In
part this is because, while the communities were expected to take care
of these folk, the support was not provided for them to do so. In the
institution, mental health services were provided (well, let’s be nice
and say they were). In the community setting, however, service
providers must also provide help with housing, food, medical care,
government entitlements, and other necessities for community living.
This has resulted in the transition not being anywhere near as
successful or cheap as it was expected to have been. In addition,
there is no one-size-fits-all mental illness. Seriously mentally ill
people often take a back seat to the marginally ill in terms of
receiving treatment unless they become a serious threat to themselves
or others.
However, the move toward deinstitutionalization still goes on
elsewhere in the world (although I admit my focus here is on more
'western' culture), although often in fits and starts.
In Canada, the Canadian Association for Community Living
< http://www.cacl.ca/index.cfm?PID=221&LNG=E> reports the following
items of concern and are working to change things more quickly:
“In 2003...
**Over 20,000 Canadian citizens are living in health related
institutions such as Seniors facilities, Nursing Homes, acute care
hospitals, Long Term Care facilities and Personal Care Homes, as
opposed to ordinary homes in the community.
**More than 12,000 persons remain trapped in institutional facilities
designed specifically to house persons with intellectual disabilities.
**Many Provinces and Territories are beginning to move away from
earlier commitments made to complete institutional closures; while
others have yet to indicate plans to close facilities.
**In at least two areas new institutions are being built that will
house persons with intellectual disabilities.
**Current government policy in many provinces and territories restrict
access to required funding and to the disability supports and
community services necessary to community living.
**More and more, individuals with intellectual disabilities and their
families are presented with options that do not support lifestyles of
choice but rather entry into group home programs and/or other places
where people are congregated.
**In many provinces and territories persons with intellectual
disabilities are being admitted on a routine basis to institutions,
directly violating a stated policy of deinstitutionalization. “
What are called Social Care homes in Eastern Europe are still
prevalent and even Amnesty International has thought them bad enough
to report on them:
Bulgaria: < http://web.amnesty.org/web/ar2002.nsf/eur/bulgaria!Open >
Hungary, Kosovo, : <
http://www.ialmh.org/amsterdam2002/11.07/human.pdf >
In the meantime, the World Bank is helping develop community- based
social services to reduce the reliance on residential institutions in
Albania, Armenia, Latvia, Lithuania, and Romania
< http://wbln0018.worldbank.org/HDNet/HDdocs.nsf/2d5135ecbf351de6852566a90069b8b6/691606b2f7395dae852567f4006fa705/$FILE/tobis+July+2000.pdf
>
So, no, I would say there is no trend back toward large institutions
by those countries that have been moving away...but they certainly
still exist. But even those new institutions mentioned in Canada
appear to be not quite the ‘horrors’ the CSCL would have us believe.
Indeed, one is a 12-bed treatment center for teens that previously
would have been sent out of the province for treatment. <
http://www.gov.ns.ca/health/release.asp?id=20030224001 > However, we
should not fault the efforts of the CSCL as Novia Scotia became the
first province to develop a strategic plan <
http://www.gov.ns.ca/health/downloads/strategic_directions.pdf > and
standards for mental health treatment <
http://www.gov.ns.ca/health/downloads/Standards.pdf >
But now to the most interesting part of your question: ‘How could we
better use the existing prime land. ‘
I’d like to refer you to the following:
“Deinstitutionalization of Persons with Developmental Disabilities: A
Technical Assistance Report for Legislators”
< http://www.ncsl.org/programs/health/Forum/pub6683.htm >
It offers more data on the effectiveness...and problems...with
deinstitutionalization.
Among other things, it lists the main barriers: “states have
inadequate budgets to cover community care”; “resistance from
community residents who consider the placement of small group homes in
their neighborhoods a social and financial blight”; “inadequate
community medical care and services”; “high staff turnover due to such
problems as inferior wages and benefits for support personnel in
community settings”; “service availability and accessibility of care”;
“institutional barriers”, i.e. the profit motive of institutions;
“priorities and biases of government”; and “clients and families
sometimes oppose receiving services outside an institution”.
Whew!
But all are factors you must take into consideration when looking for
uses for former institutional land that work to the benefit of people
with disabilities.
And here is a Guidebook on Consumer Controlled Housing for [People]
with Developmental Disabilities < http://rtc.umn.edu/guide/index.html
> that I found quite interesting and informative.
As it says, “People with disabilities may live in and purchase or
lease single-family houses, duplexes, condos, and units in housing
cooperatives. They may live alone or with others who may or may not
have disabilities. The common thread here is that people have homes
they want with services and supports they need and are able to live on
their own terms - rather than feeling like guests in places that are
owned or rented and controlled by the agencies that provide
services.”...”Most people don't want to live with others whom they
have had no voice in selecting. Yet this is typical for persons with
developmental disabilities. Controlling one's home includes
controlling not only where but also with whom one lives.”
My agency, a private non-profit, has built several fully accessible
duplexes in a small complex in our community. The project has a board
of directors separate from the agency board. We are not a government
entity nor are we a charity. We have long-term properties, i.e. just
like any other rental property in town. We also have one short-term
emergency property, which can be rented for only 3 months for PWD who
are transitioning into other housing but need a stopgap.
Based on our smaller experience, it seems to me that your ideas of
‘including inviting others in our community to live on the same site’
and the view that these locations are “prime real estate” can be the
foundation to overcoming these barriers I mentioned earlier as well as
meet the needs of people with disabilities. Indeed, it’s something
I’d like to see expanded by my agency.
By developing an integrated planned community, many of these issues
can be addressed.
1) “resistance from community residents who consider the placement of
small group homes in their neighborhoods a social and financial
blight”
As accessible group homes, duplexes, condos, single family homes (or
some variation) will be part of the community from the start, anyone
moving in will have no basis for complaint except the complaints that
always come up in a neighborhood from time to time :-) In addition,
I would include an accessible community center.
2) “high staff turnover due to such problems as inferior wages and
benefits for support personnel in community settings”
The opportunity to purchase or lease a home at an affordable price can
be a powerful incentive. Consider factoring this in. And make sure
all homes are accessible.
3) “inadequate community medical care and services”
4) “service availability and accessibility of care”
Medical facilities of some sort should be planned within the
community.
5) “states have inadequate budgets to cover community care”
6) “institutional barriers”, i.e. the profit motive of institutions
7) “priorities and biases of government
As I said earlier, we are a private non-profit and built the
properties we have. We did it with a combination of private and
public funding and, as landlords, the properties now pay for
themselves. A benefit to doing it this way, rather than trying to
talk a developer into the kind of planned community you would want,
assuming this is the path you took, is that you can then look to build
a second community with the proceeds from the first, rather than
giving the profit to someone else and hoping for the best.
8) “clients and families sometimes oppose receiving services outside
an institution”.
This will always be the case. You can’t please everyone.
I laud you for your question. I watch my community and see how some
agencies thrive while others struggle. I am on the transitional board
of a job program for people with psychiatric disabilities. They
canceled their liability insurance because ‘someone’ told them they
couldn’t ‘afford’ the $500 annual cost. I gave the director contact
names, not just vague suggestions, for how to get the money donated.
The director feels too uncomfortable to contact them. The
neighborhood association next to mine has a 7-figure portfolio built
on their tour of homes. My neighborhood has great houses, too...but
my neighborhood association thinks ‘it’s too much work’ so we have
$600 in the bank and scramble for money. Yes, I could “do all the
work myself”. I won’t. Well, maybe for my neighborhood association.
But not for that other agency. Sometimes, no matter how scary it is,
you have to think big and work hard. This is what it would take to
develop an integrated planned community, but the possibilities are
breathtaking and take into consideration this most compelling need of
people with disabilities...a place to live independently and with
dignity. (And, please note, I have not mentioned any kind of
sheltered workshop or supported employment option. That was quite
deliberate.)
I hope I’ve helped. If you would like anything clarified or expanded
upon, please don’t hesitate to ask.
Best regards,
acorn-ga
Further readings on deinstitutionalization:
Canada -
Organizational Analysis of Deinstitutionalization in a Psychiatric
Hospital
< http://www.cpa-apc.org/French_Site/Publications/Archives/CJP/2000/Aug/Organization.asp>
USA -
The Five Year Longitudinal Study of the Court-Ordered
Deinstitutionalization of Pennhurst
< http://aspe.os.dhhs.gov/daltcp/reports/3yrpenn.htm>
Sources:
Professional experience
Google search terms:
“deinstitutionalization of people with disabilities”
“mental disabilities +europe”
“deinstitutionalization +developmental disability”
“deinstitutionalization +mental disability” |
Clarification of Answer by
acorn-ga
on
14 Apr 2003 11:18 PDT
From *Building Stronger Communities For All: Thoughts About Community
Participation For People With Developmental Disabilities*
< http://soeweb.syr.edu/thechp/pcmr.html >
“The concept of normalization, which was popularized in the United
States by Wolfensberger (1972) in the 1970s, had its origins in the
Nordic countries. We can also learn from how the Nordic countries
approach equality.
A central premise in the Nordic countries is that all people have a
right to a decent standard to living. Reforms in developmental
disabilities have been tied to this idea. It is not that people with
developmental disabilities have a right to a decent life because they
are disabled; they have the right because they are citizens.
The link between normalization and equality is clear in the Nordic
countries. In the United States, people with disabilities receive
government benefits such Supplemental Security Income (SSI) or Social
Security Disability Insurance (SSDI) not because they are citizens
entitled to a decent standard of living, but because they have
disabilities and presumably are unable to work and contribute to the
society. Government support is based on presumed differences from
other people. Disability becomes central to a person's status as a
citizen. Public policy on welfare and equality runs counter to the
ideal of inclusion and being defined as a human being rather than as
someone who is different.”
While the following article is about institutionalization of seniors,
it does address Denmark and Sweden’s approach to people with
disabilities
< http://www.lin.ca/resource/html/Vol27/V27N1A4.htm>
“European countries approach the care of people with disabilities from
a different attitude, and have a very low rate of institutionalization
as compared to North America (Uhlenberg, 1997). In Denmark, prevention
of institutionalization through home care is popular (Sondergaard &
Krosnick, 1984)...Sweden has adopted the group-home approach to assist
in maintaining seniors and individuals with disabilities in the
community...(Uhlenberg, 1997). Sweden has...provided an individualized
approach to persons with disabilities. Although individuals live in
group homes, a high staff to resident ratio allows individuals to be
supported in the community by a paid worker (Pedlar, 1992). Each model
mentioned exists in a separate culture with different social systems
and structures. However, they have provided a role model for the rest
of society and can provide answers to the questions raised during the
process of deinstitutionalization.”
The Swedish Disability Support Forum < http://www.skinfaxe.se/doc.htm
> has a number of articles in both Swedish and English on
deinstitutionalization. Here are a couple that talk about its history
and current status:
*** Persons With Intellectual Disability And Exceptional Needs - The
Swedish Experience
< http://www.skinfaxe.se/proj/fia/fia01.htm >
*** Trans-Cultural Study Of The Services For People With Challenging
Behaviour In 6 Counties:
The Swedish Contribution
< http://www.skinfaxe.se/proj/fia/fia04.htm >
From these articles one concludes that Sweden was like the rest of the
world initially with using large residential homes and what were
called ‘special hospitals’ for people with developmental disabilities.
The homes were more of an educational setting while the special
hospitals were for people with DD who also had ‘exceptional’ needs.
However, “with the introduction of the welfare society {in the 1940s],
the normalization principle was formulated. Instead of continuing the
institutional system... the welfare society [had] responsibility for
offering support to persons with intellectual handicap. This was
considered desirable and the modern social services of the welfare
society were also found to be suitable for persons with intellectual
handicap.”
Indeed, while Sweden initially faced the same problems most countries
do about deinstitutionalization - lack of existing community supports,
available services and resources - the fact that it is a social
welfare state led to the financial resources being made available and
on an ongoing basis as well as the psychological commitment needed for
success.
They decided upon 4 cornerstones of success: housing, employment or
daily activities, professional support, and community supports. As
regards hosuing, they chose the group homes model. Group homes tend
to be small or have a focus on being small (e.g. if the group home has
30 people in it, it will be divided into clusters of no more than 5
people, with a separate living and cooking area for each cluster and
each person having their own private room.)
I believe the attitude of Sweden is summed up quite nicely in this
abstract of “Deinstitutionalization and normalization in Sweden and
Ontario, Canada: Supporting People in Leisure Activities” -
”Principal findings reflect the culture of human services in Canada
and Sweden. In Canada, human services follow a "residual" model and
there is stress on protection of individuals' "negative rights". In
Sweden, provision of paid support services is regarded as a social
responsiblility and a necessary means of affirming individuals'
"positive rights". The comparative success of the Swedish human
services system indicates the desirability of adapting elements of it
to the North American scene. A principal element in this adaptation is
mandated advocacy, including employment of professional recreationists
and volunteers as advocates.”
Please also check out the Fact Sheet on Sweden: Disability Policies
in Sweden
< http://www.si.se/docs/infosweden/engelska/fs87.pdf >
*******
As a side note, I came across a personal website by Kimio Moriyama of
the Yowa Hospital in Tokyo that actually summarizes the
deinstitutionalization movement quite nicely:
< http://www02.so-net.ne.jp/~mori9126/moriyama.html
What I found most interesting was the fact that Japan has over the
years significantly increased the number of beds in mental hospitals,
the reverse of deinstitutionalization going on elsewhere. (Note: the
first 4 pages are in English - the rest is in Japanese)
*******
Another article of interest on the US experience: The
Deinstitutionalization of America
< http://oaksgroup.org/inst26.htm >
*******
Google search terms: deinstitutionalization +sweden;
deinstitutionalization +norway; deinstitutionalization +denmark;
deinstitutionalization +finland; deinstitutionalization +nordic;
deinstitutionalization +disabilities +nordic (and similar variation on
the previous countries)
If you need any further info, please don't hesitate to ask.
Thanks for using Google Answers!
acorn-ga
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