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Summary: Statement on behalf of Inclusion
International and The Roeher
Institute. Includes a six point agenda
would help governments,
communities, civil society
organizations, employers, and
families advance the rights and
inclusion of all children. STATEMENT TO FIRST SUBSTANTIVE SESSION OF THE
PREPARATORY COMMITTEE FOR THE 2001 GENERAL ASSEMBLY
SPECIAL SESSION FOR FOLLOW UP TO THE WORLD SUMMIT FOR
CHILDREN
by Michael Bach
Vice-President and Director of Research
The Roeher Institute (Canada)
on behalf of Inclusion International
and The Roeher Institute (Canada)
May 31, 2000
United Nations, New York
Ambassador Durrant, Special Representatives of Heads of State
and Government, Members of the Bureau, Delegates,
Representatives of United Nations Agencies and Participating Civil
Society/NGO Organizations.
Thank you for the opportunity to speak to this session of the
Preparatory Committee on behalf of Inclusion International - an
international federation of national organizations speaking with
and on behalf of people with intellectual disabilities and their
families, and The Roeher Institute - a national organization in
Canada on disability and human rights.
I speak today about the place of children with disabilities and
their families in an agenda to advance the aims of the World
Summit. Our concern is that their voices and issues are not yet
being adequately heard.
At a global level we witness growing poverty, government
cutbacks, segregating education and social exclusion of this
group, and eugenic potential of the genetic technology
revolution.
Without focussed interventions, these trends will make a future
for one of the most marginalized groups of children and families
bleak indeed.
Let me give you a current snapshot based on the limited data we
have:
§ 150 million children and youth globally have a disability,
and this figure is rising.
§ discrimination in access to life-saving treatments, to
health care, to childcare services, to education - is endemic.
§ 50% of children and youth who are deaf; 60% of young
women with an intellectual disability - for example - are sexually
abused
§ yet their access to justice is denied because they are
often not considered credible witnesses to their own victimization
§ children with disabilities and their mothers have not
been adequately integrated into national child development
schemes - and thus they miss out on key developmental
opportunities – they are often not seen worthy of the investment
§ education exclusion persists for this group - through
segregated education or no access to school at all. This denies
children a basic right of participation, opportunity to develop
respectful relationships with their non-disabled peers, and
opportunity to develop capacities to make social and economic
contributions.
§ parents’ labour force participation is continually
downgraded - for many to unemployment - because they cannot
obtain the workplace flexibility or outside supports they need.
§ stresses on families have led many beyond the
breaking point. In some jurisdictions in “developed countries” -
where there is data - over 50% of children in child welfare and
protection systems are children with disabilities.
§ we have seen in recent years high profile cases of
disabled children being murdered by parents - often stressed
beyond the limits because of the burden of caring without any
outside supports. However, we are also seeing calls for charges
to be dropped, sentencing to be reduced, and “compassionate
murder” or “mercy killing” defences to be introduced into criminal
codes and law. This sends a message that the life of children with
disabilities is not worth preserving or protecting to the same
extent as other children.
Addressing the needs and rights of children with disabilities and
their families requires a six-point agenda for action.
Needed policy goals and what it would mean to achieve this goal
1. Establish inclusive values, rights, and approaches for healthy
child development
All children must be valued equally in law, public policy and
practice - regardless of their genetic and other characteristics,
their unique developmental potential forefronted.
2. Make reduction of child and family poverty a priority
Labour markets, income support programs, workplaces, and
family supports must ensure adequate household income, and
the flexibility to provide needed care and nurturing for all children.
3. Ensure needed child and family supports - at home and in the
community.
Supports must be provided in ways that strengthen citizenship -
flexibility, responsiveness to child and family needs, and direct
accountability to families.
4. Foster inclusive communities
Community services, schools, health care, recreation, the built
environment - must be universally designed and operate
inclusively.
5. Strengthen civil society and build solidarity.
Decision making in voluntary agencies, schools, hospitals,
government bodies must be democratized to include diverse
family perspectives. Family organizations must be strengthened,
and their participation in policy development supported.
6. Commit to information gathering on disability for inclusive policy
development
Population surveys, needs identification, and policy development
must incorporate a “disability lens” to bring focus to the plight
and needs of children and families.
We believe that adopting and implementing this six point agenda
would help governments, communities, civil society organizations,
employers, and families advance the rights and inclusion of all
children.
Investing in all children is essential if we are to build a future of
rights, democracy and solidarity - a future in which the promise of
the World Summit for Children brings hope rather than cynicism
and despair.pdf: www.crin.org/docs/resources/publications/roeher_state.pdf