Transcript Social disability policy in Iceland and its impact on the quality of life

Social disability policy in Iceland and its impact on the
quality of life opportunities for young disabled adults
with significant needs
17.June 2003, Dóra S. Bjarnason
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Introduction
How does Icelandic social disability policy
impact the material and existential quality of
life, available to young disabled people?
•Social disability policy
•The disability legislation
•Us and Them
•The fit between the legual
ends and the means
•A room of your own
•Three lives- three models
•Conclusion
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Social disability policy in Iceland
-Quality of life options
-Social policy (Titmuss 1974, Ólafsson 1999)
Welfare expenditure in 2000
The total expenditure to welfare as a percentage of
GDP ranged from approx. 25 – 29% in Denmark, Finland
and Norway, in Sweden it was over 32%, but barely 20 %
in Iceland
and
The total expenditure for disability pensions and services as
a percentage of GDP was around 4% in Finland, Norway
and Sweden, 3,3% in Denmark, and 2% in Iceland.
(National Statistics Bureau Home page 2003)
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The Disability Legislation
1979 Law on Support for the Mentally Retarded
1992 Law on the Affairs of the Disabled
•The aim of this law is to secure disabled people equal
rights and a comparable quality of life to that of other citizens,
and to create for them opportunities to lead a normal life...
(paragraph 1)
•The person has the right to services under this law who is
disabled physically or mentally, and needs special services
and supports for that reason. This includes people with
intellectual disability, mental illness, mobility disability,
visual- and hearing disability. Further, disability can also
be the result of chronic illness or accidents. (paragraph 2 )
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Us and Them: Who are the ”other citizens” ?
-Other citizens
-Typical citizens
- Disabled citizens
adulthood
young adulthood
lifestyle and life choces
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The fit between the end and the means
Disabled people shall be provided with opportunities to live in homes in accordance to
their needs and wishes as far as possible…” (paragraph 19, law 59/1992)
Table 1. Existential and material criteria for opportunities to lead a
life comparable to other citizens
Existential
Material
A
C
Economic
resources
Personal
space / private
life
B
Opportunity for
being with others,
autonomy,
choices
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A room of your own
Maximum of 6 people can live in a group home, personal space
Should not be less than 10 square meters for each inhabitant,
and in new group homes bathrooms should as “far as possible”
be part of an individuals’ personal space.
(Statutary regulations no. 296 2002)
An informal survey
In 2003, there were 82 group homes in Iceland
with 426 inhabitants.
Of those 12,4% had private space (their bedrooms) that was less than 10 m2.
16% had a private bathroom.
12,6% had a small flat
(Bjarnason and Sigurðsson 2003)
On the waitinglist were 170 addults 18-60 years old.
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Two stories – two lives
Thor
Björg
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A Home of my own – Benedikt
Structure:
•The Board
•The Personal Agent
•The Daily Helpers
•Accountabillity
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Conclusion
• Little has changed in Icelandic disability social policy since the first
legislation 1979.
•Bureaucratic structures, serve to secure disabled peoples’ lives as
dependents. For many, to be labeled disabled involves living in poverty,
and sometimes in a segregated “world”.
•Creative approaches to choice lifestyles and quality life options, are
possible. Their very existence in the service flora brings certain optimism.
What needs to change in Icelandic social disability policy?
•The policy ends are clear and rellevant, but the means to those ends
are unclear, undersupplied and over bureaucratized.
•Individually tailored and flexible supports are of utmost importance if the
policy ends are to be taken seriously.
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