The specific risks of discrimination of people with complex needs

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The specific risks of discrimination of
people with complex needs: results of
a European Study
Dr. Johannes Schädler
ZPE, University of Siegen, Germany
The Study
§ Comparative Study in 12
European countries: Belgium,
Czech Republic, France, Germany, Italy,
Lithuania, the Netherlands, Poland,
Romania, Spain, Sweden, United
Kingdom
§ Coordination: Inclusion Europe
§ Lead Researcher: ZPE,
University of Siegen
2006 –2008
§ www.nondiscrimination.eu
Zentrum für Planung und Evaluation Sozialer Die nste | Universität Siegen
Bundesvereinigung Lebenshilfe für Menschen mit geistiger Behinderung e.V.
Leipziger Platz 15, 10117 Berlin, Tel.: 0 30/20 64 11-0, Fax: 0 30/20 64 11-2 04
E-Mail: Bundesvereinigung@Lebenshilfe.de, Internet: www.lebenshilfe.de
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How will Tommy‘
Tommy‘s life look like…
like… ?
Today… ?
Tomorrow… ?
Next month… ?
Next year… ?
In five years… ?
In ten years… ?
…
... Individuals in modern societies develop their biography in relation to an 'institutionalized
life-course' that provides the mainstream path of a person's life from birth to old age. The life
course is structured by ‘
institutions’in which individuals are educated and trained, where they
love and mourn, work, do family and spend their leisure time. The life course with its
expectations and sanctions to the individual is the frame for personal growth.
People with severe disabilities face the existential risk not to get access to relevant institutions
and phases of the 'normal' life course. They are very likely to be restricted to the role of the
‘
eternal child’or the ‘
early retired’causing negative effects on self concepts.
Transition stages from one life phase to another are phases of specifically high risks of
discrimination, in particular
•because of lack of resources and services;
•because of services and resources
We found impressive developments concerning the legal position of people with disabilities in
all participating countries (e.g. non-discrimination laws), examples of good and creative support
arrangements, but also widespread “taken for granted assumptions”on excluding life-courses
for people with severe disabilities as a normative basis for specialized services failing to provide
inclusive support arrangements, and thus restricting social rights and citizenship.
We found lack of awareness and sensitivity for human rights, but also the need for better
knowledge, better local cooperation and more creativity to development individually helpful
service arrangements.
Discrimination in the life course can take different forms in different countries.
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Positive developments of citizen‘
s rights in Europe
citizen‘
since 1990 – some milestones“
milestones“
§ Mid 1990ies: Non-discrimination in
constitutional laws
§ 1997: EU-Amsterdam treaty: Nondiscrimination as principle for EU-disabilty
politics
§ 2002 - 2006: EU-Disability action plan –
equal opportunity acts in all EU-member
states and other European countries
§ 2003: EYPD: Nothing about us without us!
§ Since 2006: UN-Convention on PwD
Context of Study: EUEU-Disability Politics
§ Effective EU-Disability-Strategy: ‚
NonDiscrimination‘and ‚
Disability Mainstreaming‘
creates tensions
§ Rights based approach and new knowledge on
personalised service models challenge
traditional institution-based service systems
§ Critique and questioning: Do EU-disability
politics ignore the specific situation of
persons with severe disabilities and
complex?
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Forms of Discrimination according
to EUEU-Law
§
§
§
§
Direct discrimination
Indirect discrimination
Harrassment
Victimisation
•What are specific risks of discrimination for
people with severe disabilities and/or complex
needs
•Analysed in a life course perspective?
The Study: Objectives
§ Improve the understanding of
issues related to severe
disability
§ Identify specific risks of
discrimination in relevant
policy and life areas
§ Provide information for
Stakeholders and Policy
Makers, on how to
§ Improve the living conditions
and close delivery gaps
§ Prevent exclusion and
inequality
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Meeting the People: What are their risks of
discrimination?
§
People with severe disabilities and/or complex
needs - Who are we talking about?
§ Common characteristic: each individual with complex
needs shows a unique interaction of different care needs
which vary in depths (intensity of services needed)
and/or breadth (range of services). These needs,
because of their complexity, are specific to each person
in his/her everyday life: mobility, nutrition, and personal
hygiene, dressing or communicating;
§ ..posing different dependency problems for each
individual and his/her family
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What is ‚severe
disability‘?
Institutional reality in
Romania (2005):
vulnerable people in
shameful environments
Zentrum für Planung und
Evaluation Sozialer Dienste |
Universität Siegen
Disability and Human Rights - UNUN-Convention
§ Disability “results from the interaction between persons with
impairments and attitudinal and environmental barriers that hinders
their full and effective participation in society on an equal basis with
others”(UN CHRPwD, Preamble).
§ Do people, whose physical, cognitive or mental functions are widely
impaired, qualify for citizenship? Can people being limited in their
ability to care for their own subsistence be considered worthy of
carrying and exercising citizen’
s rights?
§ Historically public policies for people with severe disabilities have
always been shaped by the political concepts and ideologies that
were dominant at the time.
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Severe disability in a historical context: Bedlam - Asylum
(William Hogarth 1735)
Paris 1791: The Liberation of the
Insanes from their Chains
Philippe Pinel
1745 - 1826
§ P
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1850: Educating ‚
idiotic children‘
‚
Cretinenanstalt Abendberg‘
Abendberg‘(CH)
World Exposition in
Paris 1889:
(‚Industrialization‘
German Pavillon:
Model of the big
institution
(‚
Große Heil- und
Pflegeanstalt‘
)
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Genetics and Eugenics
§ Are people with severe disabilities really
anything more than a burden for the society?
§ Aren‘
t they suffering from their miserable lives?
§ Should these people with severe disabilities
really be born?
§ Shouldn‘
t the scientific knowledge we have on
genetics be used for consequent prevention?
NS-Euthanasia – Crimes
(Hadamar, Germany 1940)
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Euthanasia-Memorial Hadamar:
„Mensch, achte den Menschen!“
1948 UN Declaration on Human Rights:
“Everyone is entitled to all rights and
freedom set forth in this Declaration,
without distinction of any kind, such as
race, colour, sex, language, religion,
political or other opinion, national or
social origin, property, birth or other
status”(Art. 2).
1980:
Dortmunder
Westfalenhalle:
‚When the
cripple hits… “–
resistance
against
discrimination
against people
with disabilities
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Disabled
people
fighting for
equal rights
W. Germany 1981
„Disability
is
beautiful!“
Germany 1983
What is
severe
disability?
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The Study: Project Stages
Overview of Results
§
§
§
§
§
§
§
Mapping of policies and stakeholders
Interviews with / statements of stakeholders
Case studies and Examples of Good Practice
Twelve Country Reports
Annotated Bibliography
Five “Synoptical”papers
European Policy Recommendations
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www.non-discrimination.eu
‚complex needs‘
LifeLife-course approach:
§ Members of our societies develop their biographies in
the same framework of an institutionalised life-course:
the “normal”life-course
§ Transitions form biographies
§ Life-course institutions are ‘
secondary institutions’with
soft sanctions, when expectations remain unfulfilled (U.
Beck)
§ Unmet life-course expectations can strongly harm the
individual’
s identity and can produce deep feelings of
shame
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LifeLife-course approach
Life-course is a ‘product’of modern societies, structured by
three major institutions as orientation for individual biographies:
Childhood
and youth:
training
Adulthood:
Employment
Old age:
retirement
•with markers for beginnings and ends of a life- stage,
•with expectation and sanctions for individuals;
•with collectively organised transitions
•with partly de-standardised phases and sequences,
•but nevertheless with high stability
Some system produced risks of discrimination:
§ The more mainstream-oriented a service system
becomes, the higher is the risk of persons with severe
disabilities to be placed in traditional settings
§ People with complex needs are not sufficiently
considered in the practical implementation of nondiscrimination or equality legislation
§ High needs for support services, but low possibility to
pay for them: “negative consumers”.
§ Small and diverse group that creates no interesting
market for goods and services, and therefore product
innovation and research is often restricted.
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Summary of Recommendations
§ European Level:
§ Strengthen non-discrimination as a principle in EU-law
§ Develop a policy for ‘
universal design’and
mainstreaming that explicitly includes people with severe
disability
§ National Level:
§ Promote inclusion and mainstreaming
§ Establish and monitor high quality of support services
§ Ensure that the special needs of this group of citizens
are considered in all decisions
Thank you for your attention
www.zpe.uniwww.zpe.uni-siegen.de
www.nonwww.non-discrimination.eu
Centre for Planning and Evaluation of
Social Services
University of Siegen
57068 Siegen
e-Mail: schaedler@zpe.uni-siegen.de
Tel.: 0049-271 / 740-2212
Centre for Planning and Evaluation of Social Services| Universiity of Siegen

The specific risks of discrimination of people with complex needs

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