What is Independent Living?

The voice of disabled people
and the right to choose where
to live and whom to live with
Ines Bulic, ENIL – ECCL
Vibeke Marøy Melstrøm, ULOBA
Tove Linnea Brandvik, ULOBA
Oslo, 10 October 2014
Overview
• About ENIL
Context and current situation:
• What is Independent Living
• Right to housing
• Article 19 of the UN CRPD
• Challenges to implementation of Article 19
How to ensure disabled people can
choose where and with whom to live:
• Case study – Norway and Uloba
About ENIL
• Established in 1989
• Brings together grassroots organisations run by
disabled people, and individuals
• Members in 25 countries across Europe
• Advocates for control and choice for disabled
people through personal assistance, peer
support, barrier-free environment, housing
options and technical aids
• ECCL – ENIL’s initiative established in 2005
focused on promoting community-based
alternatives to institutional care
What is Independent Living?
• Possible through the combination of various environmental
and individual factors that allow disabled people to have
control over their own lives
• Includes the opportunity to make choices and decisions
regarding where to live, with whom to live and how to live
• Services must be accessible to all and provided on the basis
of equal opportunity, allowing disabled people flexibility
• Requires that the built environment and transport are
accessible, that there is availability of technical aids,
access to personal assistance and/or community-based
services
• IL is for all disabled persons, regardless of the level of
support needs
• NOT about being self-sufficient!
Creating conditions for IL
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Accessible information
Peer support
Accessible housing
Access to technical aids and equipment
The right to personal assistance
Accessible transport
Accessible environment
Access to education
Access to employment
Right to adequate housing
The right of everyone to an adequate standard of living
for himself and his family, including adequate food, clothing
and housing, and to continuous improvement of living
conditions.
Article 11, International Covenant on Economic, Social and Cultural
Rights (1966)
“Right to housing should not be interpreted in a narrow or
restrictive sense which equates it with, for example, the
shelter provided by merely having a roof over one’s head or
views shelter exclusively as a commodity. Rather it should be
seen as the right to live somewhere in security, peace and
dignity. […] the right to housing is integrally linked to other
human rights […]”
General comment 4, CESCR (1991)
What is ‘adequate’?
a. Legal security of tenure
b. Availability of services, materials, facilities
and infrastructure
c. Affordability
d. Habitability
e. Accessibility
f. Location
g. Cultural adequacy
Accessibility of housing
• Disadvantaged groups entitled to full and
sustainable access to adequate housing
resources
• Should be ensured some degree of priority
consideration in housing
• Housing law and policy should take fully into
account the special housing needs of these
groups – in order to realise the right of all to a
secure place to live in peace and dignity
Article 19 of the UN CRPD
Access to a range
of services, incl.
PA, which facilitate
inclusion and
prevent isolation
and segregation
Access to services
and facilities
available to
general population
Choice of where
and with whom to
live
Living
independently
and being
included in
the
community
Importance of Article 19
• UN OHCHR study on Independent Living (2012)
“[…] achievement of independent living is
critically important to the intellectual and political
structure of the UN CRPD and forms a crucible
through which to judge what effect the treaty
has on the daily lives of persons with
disabilities.”
Challenges to implementation
• Continued placement of disabled children and adults in large
institutions
• Replacing large institutions with smaller institutions, on the
grounds of institutions or in the community
• Focus on physical conditions, rather than the quality of life,
inclusion and participation
• Inadequate alternatives to institutional care (for example,
foster care for adults with mental health problems)
• Welfare reforms resulting in restricted personal assistance
and other community-based services; supporting residential
placements over Independent Living …
Result = disabled people not having choice about where,
how and with whom to live!
Examples
• Central and Eastern Europe – at least 150 mil EU
Funds invested in the renovation or building of new
institutions; ‘de-institutionalisation’ using the group home
model in several countries (e.g. Bulgaria, Hungary,
Estonia)
• Denmark - building of group homes for 30 – 60 people
isolated from the community
• Austria – increase in the number of people in
institutional care in the last 20 years
• France – at least 6,500 people with intellectual
disabilities sent to institutions in Belgium
• United Kingdom – rebranding ‘residential care’ as
‘housing with care’
Case study: Norway
Uloba, Independent
living Norway
Uloba’s vision:
A world in which
disabled people have the
freedom
to develop a full life
and participate in all areas
of society.
What makes Uloba unique?
• Established in 1991 by disabled people for
disabled people.
• You choose who, when, where and what, within
the weekly hours.
• 65% of the 100 employees in Uloba’s
administration are disabled - stipulated in our
statutes.
• Independent Living philosophy is the basis for all
our work. Social model as basic structure.
How does Uloba promote equality
for disabled people in Norway?
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Uloba's personal assistance
Work assistance
“Selvsagt” magazine
Transport company Freedom Express
“Stopp diskrimineringen” foundation
Political campaigning
Personal assistance in Norway
• An individual right from the 1 of January
2015.
• But…a right only for people with more
than 25/32 hour assistance a week. Age
below 67 years.
• For the rest, still up to the municipality to
decide the form of assistance.
• Still a Municipal health and care service.
What is different about Uloba's
personal assistance set-up?
• Personal assistance is not a goal…it is a
tool.
• Independent living…is our goal!
• Uloba's personal assistance is based on
peer counseling
Norway
• A strong and well developed welfare
system.
• Complicated.
• The level of security can be a challenge
from an anti-discrimination perspective.
• Where to live, a right to choose.
• Your right to welfare lies within the
municipality where you live.
Community-based services
• A right to housing, if you can’t provide it on
your own.
• A right to health care and personal
assistant were you live.
• Necessary amount of care/assistance.
• Waiting lists for housing.
• Mini institutions.
• About 10% of the population between the
age of 16 an 67 got a disability pension.
• Only 43% are in the work force.
• Only about 3000 got self-controlled
personal assistance.
• Housing is expensive in Norway.
• Medical model vs. the social model.
What does Uloba want?
• Increased use of self-controlled personal
services.
• Home based services.
• Housing at a reasonable price.
• Universal design in the society.
• Anti discrimination focus in politics and
practise.
Useful resources
• ENIL Fact sheets on Independent Living,
Personal Assistance, Co-production
• ENIL Definitions
• European Expert Group, Common European
Guidelines on the Transition from Institutional to
Community-based Care & Toolkit on the Use of
EU Funding, 2012
• UN OHCHR, Getting a Life: Living Independently
and Being Included in the Community, 2012
• CoE Human Rights Commissioner, Issue Paper
on Independent Living, 2012
Contact information
Ines Bulic
ines.bulic@enil.eu
Vibeke Marøy Melstrøm
Vibeke.Maroy.Melstrom@uloba.no
Tove Linnea Brandvik
tove.linnea.brandvik@uloba.no
www.enil.eu
www.uloba.no
Thank you for your attention!