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Originally Processed With FOIA(s):
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This is not a textual record. This is used as an
administrative marker by the George Bush Presidential
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Record Group/Collection:
Donated Historical Materials
Collection/Office of Origin: Frieden, Lex, Collection
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International
Subseries:
Countries
OA/ID Number:
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Folder Title:
IL[Independent Living] in Sweden [1979-1981]
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5
2
7
4
REHABILITATION
WORLD
The U.S. Journal of International
News and Information
June 30, 1981
Lex Frieden
c/o Gron House
Rehabilitation Management
Training Program
NYISSILR
P.O. Box 1000
Cornell University
Ithaca, NY 14853
Dear Lex,
Enclosed is a copy of the Rehabilitation/WORLD which we
just published. The articles in this issue are a little longer
than I want to publish in the future. I'd like to have an aver-
age length of about 3,500 words. Any graphic material you have
or can suggest would be more than welcome.
I just received the book you co-authored with Gini Laurie
from the World Rehabilitation Fund. You may be particularly
interested in her article in the enclosed issue.
If I could get an article by or before August 1 that
would make the next issue an option.
I look forward to hearing from you.
Sincerely,
Tim
John F. Moses
Editor
JFM/mm
Published by Rehabilitation International USA
20 West 40th Street, New York, N.Y. 10018
(212) 869-0461
MEN
WOMEN
HANDICAPPED
"1st THURSDAY"
presents
THE SWEDISH APPROACH TO COMMUNITY INTEGRATION OF HANDICAPPED
PERSONS
September 4, 1980
12:00 Noon - Promethean Room - TIRR
From April 23 through June 26, 1980 Joyce and Lex Frieden had the opportunity
to travel through Sweden and Holland and to look at the rehabilitation process in
these countries. Their travel was paid for through International Study Fellowships
awarded by the World Rehabilitation Fund. Joyce and Lex were particularly inter-
ested in looking at Independent Living programs and other efforts to integrate the
handicapped person into the community. Their observations revealed that many of
the efforts undertaken, particularly in Sweden, were well-intentioned but counter-
productive.
Lex and Joyce will share their observations and impressions with you in this inter-
esting and informative presentation.
"1st Thursday" is a rehabilitation film and information series conducted through
The Division of Education and Training
Medical Rehabilitation Research and Training Center No. 4
Baylor College of Medicine and The Institute for Rehabilitation & Research
INTRODUCTORY REMARKS FOR A PANEL
ON DELIVERY SYSTEMS ABROAD
Presented at a Symposium
Sponsored by
The American Association for the Advancement of Science
Houston, Texas
December 5, 1980
by
Lex Frieden, Director
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
Houston, Texas
INDEPENDENT LIVING IN SWEDEN AND THE NETHERLANDS
aNd Joyce FRIEDEN
by: Lex Frieden Director
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
Houston, Texas
Background
To those of us involved with the independent living movement here in the
United States, having control over one's own life and being active in the main-
-
stream of society are predominant themes. We view independent living programs
designed facilitate lifestyle as being consumer controlled, community
based, and providing a range of services designed to promote community living
by severely disabled people. The conceptual basis of our political and social
movement is closely linked to principles of equal opportunity, equal rights, and
freedom of choice.
We have a long way to go with our movement before we reach our goals.
However, we are not alone in our quest for independence. Disabled people in
other countries are also faced with the challenges of environmental, attitudinal,
economic, and political barriers which stifle opportunity and foster dependence.
People in some countries have only begun to address these issues, while in other
countries great progress has been made in overcoming many of the artificial and
systemic hurdles to independence.
Among those countries which are touted as having progressive laws and
programs to ensure equality for disabled people and to maximize their inde- -
pendence are Sweden and the Netherlands. Many of us have heard of the Fokus
scheme in Sweden where adapted living units are available with attendant care
and transportation services in ordinary apartment complexes throughout the
country. We also know of Het Dorp in the Netherlands where disabled people
Frieden
page 2
"operate" their own city. Some of us have considered moving to another country
where disabled people have more rights and opportunities than they do in the
United States, and others of us have dreamed about developing programs here
which equal those that we hear about in other countries.
With the hope of discovering programs, learning methods, and getting
ideas which might be transferred from Sweden and the Netherlands to benefit
we, the authors,
people
in
our
own
country, my Joyce, and I made application to the World
(WRF)
Rehabilitation Fund/for a grant to assist us in visiting and studying in these
countries. In the Spring of 1980, we received Fellowships from the International
Exchange of Experts in Rehabilitation Program sponsored by WRF and the National
Institute of Handicapped Research. With detailed study objectives relating
to independent living and consumer involvement by disabled people, we visited
Sweden for six weeks and the Netherlands for three weeks during the Summer of
1980. Psince we
n Joyee and I are both disabled (paraplegia/quadriplegia), and since
my
attendant
is
also
disabled
(brain
damaged),
we were able to look at facilities
and programs and visit with both professionals and consumers from a unique
(Most of what we hear about programs for disabled people in
perspective.
During our study, we lived in a service house for disabled people,
students' apartments with attendant care services, a transitional facility, a
hostel, and a hotel complete with roll-in showers. We tried to prepare much of
our own food, do our own shopping, and use public transportation as much as
possible. Our goal, in one sense, was to see if the grass really is greener on
the other side of the fence.
Sweden - the Good Life
MAKING efforts
Sweden has been work ing since the early 1950's to develop a comprehensive
system of programs and services for severely disabled people. This system has
programs
people
countries
comes
from
nondisabled
bodied
people.
Frieden
page 3
theoretically been designed to promote normalization, integration, and inde-
pendence. Until recently, cost has not been an important factor in determining
whether or not to implement a specific program.
In Sweden, we found the integration of disabled people to be facilitated
by a transportation system called Fairchance which uses subsidized taxis and
special vans to transport disabled people wherever they want to go. They have
strict legislation and standards for promoting barrier free architecture, and
they have clusters of barrier free housing located throughout their communities.
We discovered organized, community wide attendant care service programs which
are paid for by the government, and we found other government aid programs which
PAY
1paid for housing, food, clothing, recreation, and other necessities of life. We
found hotels and ocean going ferry boats with roll-in showers, we found accessible
tour buses, and we discovered resorts and recreation sites where attendant care
services which are provided at no extra charge to the guest who requires them.
We visited integrated schools which have been adapted to accommodate people with
these
many different types of disabilities. Many/ schools Sweden have combination
special education and mainstream education classes which utilize innovative edu-
cational methods and curriculae. We discovered a nationwide system for distributing,
recommending, repairing, and replacing special equipment and technical aids such as
wheelchairs, adapted automobiles, elevators, remote control devices, and so on.
We were impressed by consumer groups with large, very well organized member-
ships, and we were equally impressed by the sizes of these organizations budgets
which equalled those of many of our state rehabilitation agencies.
the Netherlands - Happiness Here
more
In the Netherlands, we discovered a somewhat Minstitutionalized system than
that which we encountered in Sweden. Overall, however, the service delivery system
in the Netherlands for
disabled people has been designed to enhance the quality
Frieden
page 4
of life and provide options for individual development. Like Sweden, the Dutch
government has supported many progressive programs for disabled people without
arguing for years over costs versus benefits.
In the Netherlands, we found a nationwide system for the provision of tech-
nical aids which is based in large part on the Swedish model. We also discovered
well
many modernA buildings at rehabilitation hospitals and vocational educational
schools
for disabled people We rode on an accessible canal boat and we dis-
covered sailing clubs for persons with severe disabilities. We used the Dutch
national railways to go from one side of the country to the other on several
occasions, and we found the trains to be an exceptionally convenient means of
were used
intercity transportation. We used portable rampsias "bridges" to get on and off
the trains, and although bathrooms did accessible
there
was plenty of room to park wheelchairs inside the cars.
We visited two of three cities in the Netherlands which are inhabited almost
exclusively by severely disabled people, and we visited a number of more integrated
living arrangements where attendant care services are provided and subsidized by
local governments. In addition to government sponsored attendant care programs,
we found special cost subsidies paid by the government to individuals for for
housing, special assistance, equipment, and other needs. The social insurance
program there is set up to provide all disabled people with a guaranteed minimum
income well above the poverty line.
All that Glitters.
In spite of all the effort which has gone into planning and financing progressive
programs for disabled people in both Sweden and the Netherlands, some possibly
affects
negative,
unintended,
aspects
have
developed
in
with
abled
people
in
feeling
disabled
Frieden
page 5
people
These
may
be
by
which
in
standard
emp
oyed.
With exception of the Dutch railroad and the subway system in Stockholm, we did
systems.
not find any truly integrated mass transportationA In Sweden, it appears as if
paratransit has evolved as "the solution" for transportation of disabled people;
and in the Netherlands, disabled people in need of intracity transportation are
out of luck unless they have their own automobiles or they are associated with
which has
some kind of charitable organization a
van.
We
by
of
for
more
than
a
year.
These
for
persons
with
2
With emphases on social insurance and guaranteed minimum incomes for people
who are not working, we discovered blatant discrimination against disabled people
to findjobs
who wanted to work. We also recognized a distinct lack of motivation Aon the part
of many disabled people who could work,
findjebs
We found that some groups
3
have been overlooked in the development of services for disabled people. The most
(TDD)
obvious case is that of deaf people who need telecommunication devicesAwhich their
Although
will
governments will not provide.
the
government
\would
purchase an automobile for a person who cannot use public transportation because
it
a
otherwise
he or she sits in a wheelchair, Abut will not purchase TDD for a person who cannot
use the telephone to communicate.
We were amazed to find a comparatively large number of disabled people who
were completely satisfied with their role in life as recipients of government
benefits. We heard people say that they were satisfied to sit at home and wait for
Frieden
page 6
expressed
their insurance checks to come. Many of these people Ahad no desire to be a part
of mainstream society.
We also talked with some very frustrated activists who felt as though they
had very few opportunities to help themselves. They complained about everything
being provided by "big brother. " We also Noted that MANY of the
We found little or private sector involvement in he Lping> solve problems
sabled people, and we found a rightening real consumer involvement
in the development of and programs fo disabled speople.
In Sweden, we found loopholes in the building codes, a lack of mobility in
housing for disabled people, and an abundance of separate, segregated accommoda-
tions for disabled people.
We
that manymofothe leaders of the large consumer organizations in
Sweden were not disabled, and we sensed a stereotyped image of the general public
towards disabled people as being recipients of aid. We found that money to sup-
port the consumer groups in Sweden was raised in great part by lotteries and bingo
S
games, and we have the .feeling that this encouraged the general public to have
In fact, some
charitable attitudes toward disabled citizens. n Some nondisabled bingo players
rationalized their losses to us by saying they were simply "helping the helpless. "
We wonder if the generous attendant care programs in Sweden do not foster
idea
a kind of laziness or passiveness on the part of disabled people. This/occurred
Swedish
to us when a/ shopkeeper became concerned because we were shopping for ourselves
instead of sending our "personal shopper: "sawe noticed a tendency on the part of
some disabled people to believe that all accessible housing should be reserved
for disabled people. Consequently, some housing projects which have been de-
signed to accommodate either disabled or nondisabled individuals and thereby
foster integration are being turned into segregated ghettos
people
onery
competitive
rude
whom.com
tools
This
competitive
attitude
leads,
Frieden
page 7
infighting between the agencies about who is best qualified and most capable
to
manage
tain
newly=devel
oped
programs
cussion
Simply
slows
the
pment
vofenew
programs
PIn the
Netherland S we
people
found Het Dorp and the other Dutch cities for the handicapped/ to be
mostly segregated and mostly like large nursing homes. In facts Very few of
the people who live in these cities are interested in electing or being political
representatives, or in operating or being involved in the shops and businesses
which are located in their cities. Although these cities appeared to be com-
fortable from the standpoint of the residents, they were certainly isolated from
the larger communities of Dutch citizens.
Some Conclusions
Our conclusions are drawn from numerous personal interviews, experiences,
AI though we enjoyed our trip ANd leARNed
and
observations. Other people may draw different conclusions from the same in
about some exemplary programs,
formation. Nevertheless, we have serious questions about whether or not some of
the programs in Sweden and the Netherlands which were intended to facilitate inde-
pendence actually do so.
It is clear to us that the interpretation of concepts, ideas, and particularly
terms varies significantly from one country to the other. This is probably partially
due to language differences, but more importantly, it is due to historical and
cultural differences. An example of interpretive differences occurs with the word
integration which in Sweden seems to imply physical or architectural freedom and
does not include psychological integration to the same extent as we think of it.
Another conclusion which we have drawn relates to compromising principles in
rhetoric
order to achieve short-term goals. In Sweden, we found a history of Aretoric about
integrated mass transportation. We also found a fairly well developed paratransit
system which seems to have relieved all the presssures for making the integrated
mass transit system more accessible. Here, the principle of integration seems to
Frieden
page 8
have been compromised by the desire to have convenient transportation immedi-
atelyx available.
feel
as
there
be
We
there
is
a
balance
be
tween
and
people
needs
There
seems
to
between
economic
design
programs
security
and
wealth.
There
tendency
by
those
who benefit
of
choice
from
economic
to
and
dependent
Another conclusion relate$ to the concept of welfare and insurance. Although
both Sweden and the Netherlands have social insurance programs for persons with
disabilities, these programs look, smell, taste, and feel a lot like our own wel-
fare programs. Maybe it doesn't hurt as much to call these programs insurance
as opposed to welfare, but it still creates a class difference between those
people who pay the bills, and those who reap the benefits.
The final heavy-e conclusion which we have drawn from our European
study is that plentiful services, physical accessibility, and income benefits
may raise the standard of living and enhance the quality of life for disabled
people, but they do not necessarily result in social or psychological integration.
In fact, exceptional services, programs and provisions simply magnify the dif-
ferences between disabled and nondisabled people in many cases.
also
It seems to us that by being the beneficiaries of social programs which
serve both disabled and nondisabled people in the countries we visited, people
begin to experience a loss of control and independence. Instead of enhancing
seem
the individual's concept of self-worth or dignity, some programs may lead to
self-devaluation or a loss of self-esteem.
There
must
be
a
happy
medium
between
too
and
too
Also,
there
the
choice.
Frieden
page 9
Great Ideas
Some of our more threatening conclusions may prove to be unfounded.
certainly
We
like
of
our
conclusions
systems
The fact is that we found both good and bad in the countries we visited
during our study trip. We certainly are not going to move away from America
any time soon; but we did not intend to before we visited Europe. Basically,
we believe the grass is not greener on the other side of the fence, it is
just a little different shade of grey. green.
It seems like disabled people, no matter where we are in the world, have
a lot of challenges before us if we want to be truly independent. The best we
can hope to do is work together toward common goals, to learn from our mutual
successes and failures, and support each other in every way we can.
Some things which we learned during our study in Sweden and the Netherlands
should be viewed by us as models to follow and ideas to pursue. For one, we
are convinced that the centralized provision of technical aid for disabled people
can be very effective and very cost beneficial. We are also convinced that rail-
road systems can be economically adapted for use by disabled people. Finally,
we are convinced that the integration of our schools at every level can be success-
fully accomplished and will reap great benefits to our society in the long term.
In closing, it should be noted that our trip to Sweden and the Netherlands
was one of the most significant experiences in our lives, that it was both enlighten-
ing from an educational perspective and enjoyable from a recreational perspective.
We had some wonderful times in the countries we visited, and we met some
fascinating people who will remain our friends.
June 22, 1981
Ms. Gail Kliefoth
Managing Editor
Mainstream
861 Sixth Avenue, Suite 610
San Diego, California 92101
Dear Gail:
You will be happy to know that my article on Sweden for
Mainstream is nearly complete. I will have it in the mail to you
before your deadline.
In the meantime, if you need to reach me, I will be here
at Cornell until July 10, and back in Houston after July 21.
I hope you have a good summer.
Sincerely,
Lex Frieden
Project Director
LF:md
mainstream
T.M.
MAGAZINE OF THE ABLE-DISABLED T.M.
861 SIXTH AVENUE SUITE 610
SAN DIEGO, CA 92101
(714) 234-3138
May 27,1981
ILRU
Lex Frieden
Project Co-Director
105 Drew
Houston, Texas 77006
Dear Mr. Frieden:
I am writing to see how your article on Sweden is coming. I
may be jumping the gun as they say, but I have not recieved
a letter from you stating whether or not you will be writing
the article.
Please write and let me know if you are or are not going to
write the article. If you are I will need it by August 1st.
Thank you so much.
I look forward to hearing from you.
Sincerely,
Gail Kliefoth
Managing Editor
GK/ts
PUBLISHED BY ABLE-DISABLED ADVOCACY, INCORPORATED
EXPERTS
3/19/80
Guidelines
Re: Funds for Dissemination
I. Requests for funds to attend meetings
1. Must be target group.
2. A meeting you wouldn't go to anyway.
3. WRF selects meeting and invites someone who would not
otherwise be going.
4. WRF should be sensitive to special needs of meeting participant.
5.
The context and relationship to institutions/organizations
should be considered.
II.
Funding for "Fellow" to travel and present programs somewhat
informally for dissemination purposes.
Expenditure should not exceed $600. -.
1.
Travel to academic or institutional settings where "fellow"
will address 10 or more individuals with a keen interest
on the topic studied abroad. Setting should be selected
based on degree that "fellow" can be influential there.
2. Time allotted should not exceed 5 days.
3. Fellow will be responsible for a follow-up.
III. "Fellow" plans to hold meeting at his work site.
Expenditure should not exceed $600. -.
1.
"Fellow" brings together colleagues with a keen interest and
influence in the area studied abroad.
2. Should have an agenda and goals.
3. Should meet for at least one full day.
IV. Extensive dissemination of Final Report (not to exceed $350. - -)
1. If "fellow" has an outstanding final report and wishes to
disseminate it widely, WRF might pay for copying costs and
postage charges, if the "fellow" mails it out, and provides
WRF with the mailing list.
2. Questionnaire should accompany final report and be returned
to WRF.
-2-
In all cases where funds for dissemination are being requested
or suggested, "fellow" should submit a plan to be approved by WRF.
Also, it must be understood that the fellow should ubmit
a
suitable follow-up plan, and is responsible for conducting that
follow - up.
therapy and a doctorate in Ethics: "Justice, Liberty, Com-
passion-Analysis of and Implications for 'Humane'
Health Care and Rehabilitation in the U.S.: Some Lessons
from Sweden" is the title given to her work based in part
on a fellowship during which time Dr. Purtilo spent six
months in Sweden doing a comparative study of these
values which are inherent in "humane" health care in the
U.S. and Sweden. Dr. Purtilo currently is an associate
professor of Health Care Ethics and Humanistic Studies
at Massachusetts General Hospital Institute of Health
Professions.
January 1981 Number Three
IEIR: Monograph Briefs
ABOUT THE PROJECTS:
What follows are short "takes" on monographs which will
be published in January and February 1981 under the
June 30, 1981 will mark the completion of the third and
International Exchange of Information in Rehabilitation.
final project year of the International Exchange of Experts
WRF will distribute these monographs automatically to:
in Rehabilitation and the International Exchange of Infor-
State VR Directors, rehabilitation counselor educators,
mation in Rehabilitation. Under the IEER, there have been
RTC, R.E. and RRRI Directors, rehabilitation information
40 U.S. experts who have traveled abroad, written fellow-
centers, clearing-houses and libraries, IEER fellows, and
ship reports, and who are actively involved through writ-
WRF Board members, as well as core special interest
ing, speaking, and at the work-site in using the knowledge
groups for each monograph (e.g. IL programs for mono-
gained from their experience. WRF is currently finding out
graph #10). Others who wish to receive one or more
who does what and why with what kind of impact.
monographs should use the order form on the third page
Under the IEIR, we will be following up with those indivi-
of this issue of Interchange.
duals who have received the monographs. (We will have
Monographs are distributed free of charge. We invite you
published a total of 12 by the end of February) to find out
to become part of our follow-up study by completing our
more about the impact of specific rehabilitation material
questionnaire. Stock is limited and we cannot guarantee
from abroad published and distributed here in the U.S. in
availability after March 15, 1981.
monograph form.
Monograph 8
International Resource Directory Planned
Justice, Liberty, Compassion-An Analysis of and
Descriptions of rehabilitation sites have been provided to
Implications for "Humane" Health Care and Rehabili-
us by the 40 fellows who studied abroad under the IEER.
tation in the U.S.: Some Lessons from Sweden,
Using this material and other information, we are planning
by Ruth Purtilo, R.P.T., Ph.D.
Associate Professor of Health Care Ethics and
to approach a publisher regarding a directory which
Humanistic Studies
would have considerable information regarding rehabilita-
Massachusetts General Hospital Institute of Health
tion programs and people in several countries, including
Professions, Boston, Massachusetts
Australia, Great Britain, Scandinavia, The Netherlands.
Please write to us if you anticipate the need for such a
One of the more compelling elements in Dr. Purtilo's
directory. We would like to see how much interest there
paper is her analytic framework, the utility of which was
might be in such a publication.
demonstrated in her evaluation of the differences be-
tween Swedish and American long-term care policies.
IEER Fellows Write Monographs
More importantly, Purtilo's framework offers us an oppor-
tunity to materially change the terms of discourse needed
During Project Year '80-'81 we are trying out a variation of
to bring the issues into sharper focus. The justice-liberty-
the IEIR.
compassion framework is a useful one if we are to ac-
We plan to publish two monographs which have been
quire a better handle on the trade-offs in long-term care
written by U.S. experts who have been abroad on IEER
policy. Without such a framework, policy debate is likely
fellowships. The authors were selected because of the
to remain the captive of ideological shibboleths and hack-
interest generated by their investigations.
neyed phrases that obscure more than they enlighten.
Lex and Joyce Frieden are joining Gini Laurie (Editor of
Rehabilitation Gazette) in writing about European inde-
pendent living philosophies, policies and practices, as
well as how disabled "consumer advocacy" works in
Sweden and Holland.
Another monograph has been prepared by Ruth Purtilo,
an individual with a professional background in physical
World
Rehabilitation Fund
International Exchange of Experts in Rehabilitation
International Exchange of Information in Rehabilitation