Transcript Inclusion Around the World Progress and Challenges

Hear Our Voices: What
People with an Intellectual
Disability and their Families
Say About Poverty and
Disability
Diane Richler
President
Inclusion International
• Why focus on poverty?
• What have we learned?
• Convention on the Rights of Persons
with Disabilities
• Implications for the future
IASSID
&
Inclusion International
Yin and Yang :
Two opposing yet
complementary
aspects of a
phenomenon
Inclusion International:
Who we are
• Family-based organization of 200 national members
advocating for human rights of people with intellectual
disabilities and their families in 115 countries
• Consultative status with ECOSOC and UN agencies
• Work through formal and informal networks
• Linking knowledge at all levels --local to global–
to support policy change and development
Inclusion International:
Our Vision
A world where people with intellectual
disabilities can equally participate
and be valued
in all aspects of community life
Why focus on poverty?
UN Millennium Development
Goals
Eradicate Extreme Poverty and
Hunger: Halve the proportion of
people living on less than a dollar a
day and those who suffer from
hunger
Achieve Universal Primary
Education: Ensure that all boys &
girls complete primary school.
Promote Gender Equality and Empower
Women: Eliminate gender disparities in
primary and secondary education
Reduce Child Mortality: Reduce by
two thirds the mortality rate among
children under five.
II Millennium Development Goals
Eradicate Extreme Poverty For People with
Disabilities and their Families: People with
intellectual disabilities and their families will
live free of poverty and discrimination
Achieve Inclusive Education: All children with
intellectual disabilities will receive good quality,
inclusive education with appropriate supports
Promote Gender Equality for Women with
Disabilities: Eradicate social, economic and
political discrimination against women and girls
who have a disability and their mothers
Reduce the Mortality of Children with
Disabilities: Reduce the mortality rate of
children who are born with a disability or
become disabled in the early years by two thirds
Improve Maternal Health: Reduce
by three quarters the ratio of women
dying in childbirth.
Achieve the Rights of Children and Families:
Respect the rights of children with disabilities;
provide pre- and post-natal health care; support
families to care and support of their member
with a disability
Combat HIV/AIDS, Malaria, and
Other Diseases: Halt and begin to
reverse the spread of HIV/AIDS and
the incidence of malaria and other
major diseases.
Combat HIV/AIDS: Reverse the spread of
HIV/AIDS among people with a disability and
support and care for children with disabilities
who have been orphaned in the community
Ensure Environmental Sustainability:
Achieve significant improvement in
the lives of at least 100 million slum
dwellers
Ensure Environmental Sustainability:
Achieve significant improvement in the lives of
people who have an intellectual disability and
their families who live in extreme poverty
Develop Global Partnership for
Development:
Improve an open trading and financial
system with a commitment to good
governance, development and poverty
reduction - nationally and
internationally
Develop Global Partnership for Development:
Ensure that global efforts to promote good
governance and global partnerships will
contribute to the human rights of people with
intellectual disabilities
The Current Situation
• 3 year global study
on poverty and
disability
• 80 countries
participated
• “Hear Our Voices”
What we learned
Eradicate Extreme Poverty For People
with Disabilities and their Families
• 130 million people with an intellectual
disability and their families around the
world….
• Vast majority live in poverty and
experience exclusion
• 26 million people with intellectual
disabilities live on less than $1 a day
Extra Costs of Disability
+
Inability to Work
=
Poverty and Debt
Achieve Inclusive Education
• Less than 5% of children with
disabilities in majority countries
complete primary school
• Of the 120 million children out of
school, 40 million have a disability
Kenya Association
for the Intellectually Handicapped
Promote Gender Equality for
Women with Disabilities
• Girls and women with a disability
and mothers are doubly
disadvantaged in accessing health
care education, employment
Reduce the Mortality of Children
with Disabilities
• In some countries child mortality
for children with a disability is 4
times higher than for other children
Achieve the Rights of Children
and Families
• Cost of Disability Borne by Individuals
and Families
– Un-reimbursed costs of care-giving, health care,
medication, technical aids and devices
– Largest un-reimbursed cost is care-giving provided by
families
– Reliance on families leads to ill health, lost opportunity to
earn income, increased family debt
Key causes of poverty of people
with disabilities
and their families
• Exclusion from education, health care and
employment
• Loss of income due to care giving
• Additional costs
• ‘Discrimination by association’ of families
Combat HIV/AIDS
• Higher risk of HIV/AIDs because
of lack of education and increased
vulnerability
Ensure Environmental
Sustainability
• Environmental degradation and lack
of access to water or basic
sanitation has disproportionate
impact
Develop Global Partnership for
Development
• Excluded from dialogue on public
policy and poverty reduction
Africa
• Cultural and social conception of disability
• Extreme poverty and exclusion marginalizes
people
• Development Assistance ignores disability
• Poverty Reduction Strategies do not
effectively engage civil society
• Civil society lacks capacity
Europe
• Significant exclusion in both east and west
• Little attention within social inclusion agenda
• Little or no attention to the role of families
• Failures of the welfare state in the west
• Social Protection framework fails to promote
inclusion
• Transition to market economies has systemic
implications for exclusion
MENA
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Social conception of disability
Intellectual disability more prevalent; less awareness
Family organizations controlled by professionals
Political unrest fosters exclusion of vulnerable groups
Difficult environment to promote human rights
Enormous economic inequality within nations and
within region
• Role of family both an asset and a detriment to
inclusion
• Displaced and immigrant populations
Asia Pacific
• Enormous region with very different political
and economic contexts (India, China …)
• Disability organizations have developed
strategies at regional level with support from
UNESCAP to promote poverty reduction
• People with intellectual disabilities and family
organizations in the region are not included in
the regional process
The Americas
“Listening to families helps us to understand that poverty
does not affect only individuals but poverty is a systemic
human issue affecting families, communities and nations.”
Roberto Leal, Executive Director, Inclusion Inter-Americana
• Poverty is about exclusion (across all the MDG
areas)
• Structural causes (extreme and relative
poverty)
• Development Model
• Cultural Attitudes: Inclusion and recognition
of rights not deeply rooted
For People with an Intellectual
Disability
and their Families
POVERTY = SOCIAL EXCLUSION
People with Disabilities and
Families Drawn into Cycle of
Poverty and Exclusion
• At birth and infancy
• When excluded from school and labour
markets
• When one or more parents leave labour
market/economy
• When individuals and families attempts to
participate in community and public life fail
Convention on the Rights of Persons
with Disabilities
A Global Human Rights Framework
An Escape from Poverty?
Purpose of Convention
To promote, protect and ensure the
full and equal enjoyment of all human
rights and fundamental freedoms by
all persons with disabilities, and to
promote respect for their inherent
dignity
A Paradigm Shift
Persons with disabilities
• are not "objects" of charity, medical
treatment and social protection
• are "subjects" with rights, capable of
making decisions about their lives
What is Disability?
• Preamble :
– Disability is an evolving concept, and that disability
results from the interaction between persons with
impairments and attitudinal and environmental
barriers that hinders full and effective
participation in society on an equal basis with others
• Article 1 :
– ‘Persons with disabilities include those who have
long-term physical, mental, intellectual or sensory
impairments which in interaction with various
barriers may hinder their full and effective
participation in society on an equal basis with others
General Principles
• Respect for inherent dignity and individual autonomy
• Non-discrimination
• Full and effective participation and inclusion in
society
• Respect for difference and acceptance of persons
with disabilities as part of human diversity
• Equality of opportunity
• Accessibility
• Equality between men and women
• Respect for the evolving capacities of children with
disabilities
Accessibility
 Justice (article 13)
 Living independently and being included in the
community (article 19)
 Information and communication services
(article 21)
 Education (article 24)
 Health (article 25)
 Habilitation and rehabilitation (article 26)
 Work and employment (article 27)
 Adequate standard of living and social
protection (article 28)
 Participation in political and social life (article
29)
 Participation in cultural life, recreation, leisure
and sport (article 30)
Rights in the Convention
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Equality before the law
without discrimination (article
5)
Right to life, liberty and
security of the person
(articles 10 & 14)
Equal recognition before the
law and legal capacity (article
12)
Freedom from torture (article
15)
Freedom from exploitation,
violence and abuse (article 16)
Right to respect physical and
mental integrity (article 17)
Freedom of movement and
nationality (article 18)
Right to live in the community
(article 19)
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Freedom of expression and
opinion (article 21)
Respect for privacy (article
22)
Respect for home and the
family (article 23)
Right to education (article 24)
Right to health (article 25)
Right to work (article 27)
Right to adequate standard of
living (article 28)
Right to participate in political
and public life (article 29)
Right to participation in
cultural life (article 30)
Convention on the Rights of Persons with
Disabilities:
Ratifications as of August 25,2008
Australia
Bangladesh Brazil Croatia Cuba
Chile China Ecuador Egypt
El Salvador Gabon Guinea Honduras
Hungary India Jamaica Jordan Kenya Mali
Mexico Namibia Nicaragua Niger
Panama Peru Philippines Qatar San Marino
Saudi Arabia Slovenia
South Africa Spain Thailand Tunisia
Priorities for the Implementation
of the Convention on the Rights
of Persons with Disabilities
• Recognition of Families
• Legal Capacity
• Inclusive Education
• Living in the Community
• Inclusive Development
Preamble: Families
…the family is the natural and
fundamental group unit of society and
is entitled to protection by society
and the State
Right to Legal Capacity:
Article 12
• legal capacity on an equal basis with
others
• access to support in exercising legal
capacity
• appropriate and effective safeguards
to prevent abuse
Living independently and
being included in the
community : Article 19
•
Right to choose place of residence
and where and with whom to live
Article 24: Education
• Progressive realization – goal of full
inclusion
• The right to education in the regular
education system
• The right to supports needed
Article 32:
International Cooperation
• Inclusive international cooperation
• Capacity-building
• Cooperation in research and access to
scientific knowledge
• Technical and economic assistance
Implications for the Future
•Inclusive Development – across all
Millennium Development Goals
•Social and Economic Change
•Investment in Social Capital
Inclusive Development
• Does not mean only disability
programmes
• Including people with disabilities in
development is not about percentages
but rather about new models of
development
Adopting a model of “inclusive
development” would mean:
• Measuring inequality, not only economic
success
– requires the development of indicators of
inclusion.
• Investing in participatory processes for
economic development
– requires reform of the PRSP process and
private sector planning at the country level.
• Investing in the capacity of civil society to
engage more effectively in policy dialogue
on economic development and planning
– Requires investment in civil society
Social and Economic Change
Shift from
$ for rehabilitation and services
$ to support economic and social
inclusion
How Poverty is Defined
Determines
How it is Addressed
• Monetary issue:
– measure income and purchasing power
• Capability approach (Sen):
– self-determination
• Participatory:
– “Voices of the Poor”
• Social Exclusion:
– Overcome social inequalities
Sachs’ Theory of Economic
and Social Development
• Where many in poverty, country can’t get
on the ‘ladder of economic and social
development’
• Country gets on ‘ladder’ when capital per
person starts to accumulate year over year
• Country heads into poverty, when value of
capital per person declines year over year
Sachs : Capital Required for
Economic and Social Development
• Human capital
• Business capital
• Infrastructure capital
• Natural capital
• Public institutional capital
• Knowledge capital
Inclusion International’s addition
to Sachs’ model
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Human capital
Business capital
Infrastructure capital
Natural capital
Public institutional capital
Knowledge capital
• Social Capital
What is Social Capital?
• The fabric of our connections with each
other
• The collective value of our “social
networks” [who people know] and our will
to do things for each other [norms of
reciprocity].
Robert Putnam, Harvard University
How does social capital work?
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Trust
Reciprocity
Information
Cooperation
Collective action
Broader identity
Investment in
Social Capital
• Investing in strategies and processes that
build social capital.
– shift from “consultation processes” to
processes that produce innovation, trust and
social capital.
• Investing in strengthening civil society
organizations so that they can participate
meaningfully in broad based democratic
processes
For People with an Intellectual
Disability
and their Families
SOCIAL INCLUSION =
RIGHTS + SOCIAL CAPITAL
Our collective efforts in
eliminating poverty
should be measured not by
the wealth of nations
but by the well-being and
equality
of the world’s people.
Join us in Ottawa
2008 Global Forum for Inclusion
November 17-21,2008
www.inclusion-international.org