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The International Save the Children Alliance
Draft comprehensive and integral international Convention
on the protection and promotion of the rights and dignity
of persons with disabilities
May 2004
While many of the experiences of disabled adults and children and young
people are similar, they are not the same. While parents and children
share joint concerns their interests are not the same. It is not appropriate
that the concerns or interests of children and young people are simply
subsumed under those of adults or parents.
Too often the rights of disabled children are violated and disregarded.
In order to ensure that the rights of disabled children and young people
are included in the proposed Convention, it is imperative that their
different perspectives are well reflected and made explicit in the text.
The new Convention offers a unique opportunity to assert and codify
those rights, and place explicit obligations on governments to take
action to make them reality.
Save the Children is an international child rights
organisation fighting for the rights of disabled children like all children.
We look forward for a world, which respects and values disabled children
like all children.
Based on our experience in child rights and child participation we consider
it to be our duty to take part in the shaping of the new Convention.
We base our input on what disabled children as rights-holders do prioritise
to have their rights met like all children and to promote an inclusive
society.
(Note: Whilst this paper is informed by disabled children, and based
on our experience as international child-rights organisation, it does
not intend to formally represent disabled children and youth)
www.savethechildren.org.uk
email: m.vanderkroft@savethechildren.org.uk
1 Preamble
The draft does not mention children, the committee may want to stress
that this convention applies to children as well as adults. We emphasise
that children as well as adults with disabilities are entitled to make
their own decisions and have their views respected. We recognise children
and adults with disabilities as individual rights holders as well as
in relation with their social network.
Suggested changes
c. Reaffirming the universality, indivisibility and interdependence
of all human rights and fundamental freedoms and the need for children
and adults with disabilities to be guaranteed their full enjoyment
without discrimination
g. Recognising diversity and consequent risks of multiple discrimination
for persons with disabilities
h. Concerned that, despite the efforts and actions undertaken by Governments,
bodies and relevant organisations, children and adults
with disabilities continue to face barriers in their participation as
equal members of society and violations to their human rights in all
parts of the world
k. Recognising the importance for children and adults
with disabilities of their individual autonomy and self-reliance,
including the freedom to make their own choices
m. Concerned about the difficult conditions faced by persons with severe
or multiple disabilities who are subject to multiple or aggravated forms
of discrimination on the basis of race, colour, age,
sex, language, religion, political or other opinion, national or social
origin, property, birth or other status
Suggested additional paragraph
Recognising the importance of social relations and interdependence of
children and adults with disabilities at the level of the family, peers
and networks beyond in society
Recalling that the CRC emphasises that children, including those with
disabilities, are rights holders, entitled to respect for their views
in accordance with their age and maturity’.
Draft Article 1 – the purpose of the convention
This article says that the purpose of the convention is to ensure that
the human rights of people with disabilities are respected.
Suggested changes
‘The purpose of this Convention shall be to ensure the full, effective
and equal enjoyment of all human rights and fundamental freedoms by
persons, including children, with disabilities’.
Draft Article 2 – Principles
This article describes the principles in the convention. We emphasise
that all persons with disabilities are rights holders
Suggested changes
f. Diversity and equal opportunity of women and men, girls and boys
with disabilities
Draft Article 3 - Definitions
The draft does not provide basic definitions.
Suggested changes
If it is decided to include a definition of ‘persons with disabilities;
we want to add that this includes children with disabilities.
For example:
‘Persons with disabilities’ – applies to children as well as
adults, expect where national law provides specific legislation excluding
all children from particular activities, for example, sexual relations,
marriage, employment.
Suggested additional definition
The text mentions issues of diversity; we therefore recommend a
definition of diversity as all persons with disabilities are
unique. This definition needs to specify disability as an issue of difference,
concretise issues of diversity within the community of disabled people.
This definition needs to provide a comprehensive view instead of gender,
ethnicity in its own and relate diversity with risks of multi-discrimination
(on the basis of race, colour, gender, age, communication skills, level
of autonomy in daily life, socio-economic status,... )
Draft Article 4 – general obligations
This article sets out the obligations on governments towards persons
with disabilities as rights holders. We would wish to ensure active
participation of children in developing policies and legislation to
implement this convention.
Suggested changes
g. In the development and implementation of policies and legislation
to implement this convention, States Parties shall do so in close consultation
with, and include the active involvement of, persons with disabilities,
including children, and their representative organisations.
Draft Article 5 – positive attitudes
This article sets out actions that government must take to challenge
discrimination. It says that governments must work with people with
disabilities in designing campaigns and programmes.
Suggested change
We wish to emphasise the intrinsic value and contribution of all children
and adults with disabilities, irrespective of their ability
to socialise and their level of self-reliance. This we find important
to ensure inclusion of severe and multiple disabled persons.
1. c Promote an image of children and adults with
disabilities as valuable and contributing members of
society in their own respect, sharing the same rights
and freedoms as all others and in a manner consistent with the overall
purpose of this Convention.
Suggested additional paragraph
1. d Combat patronising, bullying and neglect on the basis of perceived
incapacity of disabled children and adults in public services and society
overall
We wish to ensure that governments must also work with children with
disabilities, not just adults.
2.d. working in partnership with persons with disabilities,
including children, and their representative organisations
in all measures taken to give effect to the obligations contained in
this article’.
Draft Article 7 – equality and non-discrimination
The text includes ‘age’ as a ground for non-discrimination. However
we wish to ensure a full coverage of the concept of discrimination as
currently described in the text.
Suggested changes
We are concerned that the text will allow misunderstanding and inappropriate
use. If any distinction needs to be made, this needs to be on the basis
of required skills instead of perceived disability. We therefore recommend
to remove article:
3 ‘Discrimination does not include a provision, criterion or practice
that is objectively and demonstrably justified by the State Party by
a legitimate aim and the means of achieving that aim are reasonable
and necessary’
We recognise the need for preparatory or supportive measures in order
to, and as long as this is necessary for children and adults with disabilities
to address equal rights and to enable full participation. However we
wish to emphasise that any such measures need to promote inclusion and
prevent segregation of disabled children and adults as such. We therefore
recommend a revision of article:
5 ‘Special measures aimed at accelerating de facto equality of persons
with disabilities shall not be considered discrimination as defined
in the present Convention, but shall in no way entail as a consequence
the maintenance of unequal or separate standards; those measures shall
be discontinued when the objectcives of equality of opportunity and
treatment have been achieved’
Draft Article 8 – right to life
This article applies to everyone including children. However we suggest
to add the concept of survival and development. In addition we wish
to recognise the rights of all children to be prepared in emergencies.
Suggested changes
In line with the core principles and art 6. of the CRC we propose another
title
Draft Article 8 – right to life, survival and development
Suggested additional paragraph
8.1 Children and young people have the right to physical, mental, spiritual,
moral and social development to the maximum extent possible.
We recognise the global increase in situations of unrest, conflict
and disaster, which poses extra risks for children and adults with disabilities
upon the chance for survival, security and development.
Suggested additional paragraph
8.2 Children and young people have the right to be prepared, protected
and supported in situations of civil unrest, armed conflict, loss of
home and habitat, and or their relatives.
Draft Article 9 – equality before the law
This article deals with the right to disabled people to be treated equally
in the legal system and to acquire assistance. Where necessary, so that
they can enter contracts, sign documents or take care of their own finances.
Children, and especially disabled children, are often prevented from
taking responsibility for their affairs or to give evidence in court,
even when they are capable of doing so.
Suggested changes
9.a States Parties shall recognise persons with disabilities as individuals
with rights before the law equal to all other persons; and respect
the rights of children with disabilities to exercise legal capacity
in accordance with their evolving capacities.
9.d States Parties shall ensure that children and adults
with disabilities who experience difficulty in communication,
accessing and handling information needed to address their rights, can
acquire non-partial assistance, to express their preferences,
choices and decisions, as well as to enter into binding agreements or
contracts, to sign documents, and act as witnesses
Draft Article 10 - liberty and security
This article does not provide clear arguments or contexts to deprive
disabled children and adults of their liberty. Non-voluntary segregation
of disabled children and young people from their families is still common
practice in various parts of the world. For this reason we recommend
a revision of this article to ensure that any segregation and or institutionalisation
on the basis of disability and or perceived incapacity as such will
be halted. Furthermore the article seems to be primarily based on needs
instead of rights and does not become clear who defines the needs: the
person him/herself, the authorities or the professional(s).
Some thoughts for change
10.2.
• Non-voluntary deprivation of liberty only might be considered and
or enforced if the person is causing serious danger to himself or his/her
environment
• Deprivation of liberty voluntarily can be considered if this prepares
or supports the person back to his/her own household, daily life and
participation in education, job, household or leisure. Another reason
can be to provide the necessary temporary respite to the carers
• Deprivation of liberty needs to be focussed on reintegration rather
than long term or permanent separation
Draft Article 11 – freedom from cruel, inhuman and degrading
treatment
This section covers very different issues, deserves more coherence
with art 10 &12 and thus requires fundamental change.
Some thoughts for change
11.1 This article does not seem to cover the increase in threatening
and inflicting cruel acts aimed to maim and traumatise children and
adults in situations of upheaval, conflict and war. This is especially
true in the context of recruiting child-soldiers and street-gangs; but
also where disabled children are separated from their family or live
in institutions.
11.2 see comments for article 10
Draft Article 12 - freedom from violence and abuse
This article is important for children. Children generally are extremely
vulnerable to violence and abuse. And in most countries in the world,
it remains lawful to hit them. Disabled children are even more vulnerable.
So, it is important to emphasize that children with disabilities must
have the same level of protection as adults with disabilities. Many
children and young people with disabilities have also argued the importance
of sensitizing parents to understand their children’s rights not to
be hurt and abused.
Suggested changes
12.1 States Parties recognise that persons with disabilities,
in particular women and children, are at greater risk, both
within and outside the home, of violence, injury or abuse, neglect or
negligent treatment, maltreatment or exploitation, including sexual
exploitation and abuse. States Parties shall, therefore, take all appropriate
legislative, administrative, social, educational and other measures
to protect persons with disabilities, both within and outside the home,
from all forms of violence, injury or abuse, neglect or negligent treatment,
maltreatment or exploitation, including sexual exploitation and abuse.
These measures shall acknowledge the equal rights of children
to protection from all forms of violence and abuse.
Suggested additional paragraph
12.2. States Parties shall take all appropriate measures to establish
child protection mechanisms which are accessible to children with disabilities,
including information on accessing help, training of all relevant professionals,
introduction of child protection policies in all institutions, parent
education programmes, and safe reporting procedures.
Draft Article 13 – freedom of expression and access to information
Children with disabilities are often denied access to information and
therefore the right to express themselves. Bullying and neglect is a
problem expressed by many disabled young people. It is important that
governments provide information for children and adults with disabilities.
Suggested changes
States Parties shall take appropriate measures to ensure that persons
with disabilities can exercise their right to freedom of expression
and opinion through Braille, sign language, and other modes of communication
of their choice, and to seek, receive and impart information, on an
equal footing with others, including by:
13.a providing public information to persons with
disabilities, including providing age- appropriate information
for children with disabilities, on request, in a timely manner
and without additional cost, in accessible formats and technologies
of their choice, taking into account different kinds of disability
Suggested additional paragraph
13.b enabling children and adults to communicate on an equal footing
with others by providing extra time to access, reflect and act upon
information, by providing plain information and facilitating augmentative
and alternative modes of communication
13.c enabling children and adults to appoint a representative
if alternative modes of communications don’t suffice to express and
participate on an equal footing
Draft Article 14 – respect for privacy, the home and family
This article deals with the rights of people with disabilities to privacy
and to family life. We wonder if the title covers the content of this
article. One of the issues children and youth with disabilities prioritize
is the assumption that parents and caretakers are their spokespersons.
Children and young people want parents and caretakers to respect their
ability to make their own decisions and begin to be more independent
as they grow up.
Additionally we emphasize the need for a coherent prohibition in the
convention text to remove children from their homes against the will
of parents and or the child, only on the basis of perceived incapacity
due to disability.
Suggested changes
Title article 14 – respect for identity, the home and family
14.2 States Parties to this Convention shall take effective and appropriate
measures to eliminate discrimination against persons with disabilities
in all matters relating to marriage and family relations, and in particular
shall ensure:
14.2a ‘the rights of children with disabilities to respect
for increasing levels of autonomy within the family in accordance with
their evolving capacities’;
Draft article 15 – living independently
This article deals with the right to autonomy and inclusion. However
we recommend an emphasis on the right to be self-reliant as well as
the right to play a constructive role in society at all levels so as
to enable participation to the fullest. The concept of independent living
as such is not aimed for in many countries and particularly not for
children and youth with disabilities. This article needs to embed the
concept of family and peers wherein children and adults with disabilities
participate.
Last but not least we emphasise the right to live in the community and
importance of support services which make this possible.
Suggested changes
States Parties to this Convention shall take effective and appropriate
measures to enable children and adults with disabilities
to become self-reliant and be fully included in the
community, including by ensuring that:
15.c that persons with disabilities have access to home based,
community based support services necessary to support living
and inclusion in the community, and to prevent isolation or segregation
from the community.
Draft article 16 - children with disabilities
The current text is mainly taken from Article 23 of the Convention
on the Rights of the Child. There, it is an article focusing on disability
in a convention for children. But here, it needs to address a comprehensive
child-perspective in this Convention. We object that basic services
are made subject to available resources. We emphasise the need for inclusive
basic services as a rule and special services as an exception. We wish
to focus on the rights and abilities of disabled children rather than
to label disabled children upon their needs and problems.
Suggested changes
1 States Parties undertake to comply with their obligations
to children and young people with disabilities under the Convention
on the Rights of the Child.
2 States Parties recognise the obligation to respect the evolving
capacities1 of children with disabilities in the exercise of their rights,
and the right to express their views freely on all matters affecting
them, their views being given due weight in accordance with the age
and maturity of the child2. To ensure that children with disabilities
enjoy a full and decent life, in conditions that ensure dignity, promote
self-reliance and autonomy and facilitate the child’s active participation
in the community.
Suggested additional paragraph
3 States respect the obligation to include disabled children and youth
in basic services for all. States develop special services only for
those disabled children who require preparation for inclusive services
and to support basic service structures to be inclusive for all children
covering all aspects of child life3.
Suggested change
3->4 States Parties recognise the right of children
with disabilities to inclusive care, within their community,
relevant for their daily life, which shall include:
(a) early provision of appropriate and comprehensive
services;
(b) advisory & facilitative services to enable disabled
children to participate in basic services and to support the basic service
infrastructure to be truly inclusive
(c) assistive services for the child and his/her caretakers to prepare,
support the full development and inclusion of the child in all aspects
of child life and child rearing.
4->5 Recognising the rights and abilities
of children with disabilities, assistance extended in accordance with
paragraph 3 of the present article shall be provided free of charge,
or a sliding scale taking into account the financial
resources of the parents or others caring for the child;
5->6 Children with disabilities and their parents
or other persons caring for or legally responsible for the child shall
be provided with appropriate information, referrals and counselling,
and information made available in these ways should provide them with
a positive view of their potential and right to live a full and inclusive
life.
7 States Parties shall recognise the particular vulnerability
of children with disabilities to abandonment and rejection, and take
all appropriate measures to provide assistance and education to parents
in the performance of their child-rearing responsibilities in order
to minimize the likelihood of rejection. Where children with disabilities
are unable to live with their parents, every effort shall be made to
provide alternative family care, the best interests of the child being
the paramount consideration in such placements.
Draft Article 17 - education
The basic principle is that disabled children and adults, like all
persons have a right to education. We emphasise the obligation of governments
to provide compulsory and quality education for all children and adults.
We emphasise the importance of equal access, utility of education and
child-focussed methods enabling disabled children, like all children
to achieve their full potential. We wish to avoid pre-selected training
or any kind of education on the basis of perceived disability instead
of the potential of the child.
Suggested changes
17.4 States Parties shall ensure that children with communication
4 disabilities may choose to be taught in alternative language
and to receive a curriculum in this language. States Parties shall take
appropriate measures to ensure quality education to students with communication
disabilities by ensuring skilled teachers and basic
additional resources
Draft Article 18 - participation in political and public life
This section is written to ensure that people with disabilities are
allowed to vote, stand for election and take part in public affairs.
The Convention on the Rights of the Child says that children have a
right to be heard on issues that affect them. This includes legislation
and policies. Many governments have begun to set up consultation forums
for children and young people, but very often children with disabilities
are excluded. We therefore want to include a section, pointing out that
children have the right to be involved.
Suggested changes
States Parties recognise the political rights of persons with disabilities,
without discrimination, and undertake to:
18.b actively promote an environment in which persons with disabilities,
including children, can effectively and fully participate in
the conduct of public administration, and shall encourage, as appropriate,
their participation in public affairs, including to:
(c) to ensure that persons with disabilities, including children, and
their organisations participate, on an equal basis to others, in all
decision-making processes, in particular those concerning issues relating
to persons with disabilities.
Draft Article 19 - accessibility
This is a high priority for young disabled persons. The article does
cover most of the issues and also requires governments to consult with
disabled people. However, to often, children get left out of those processes.
Suggested changes
19.2 States Parties shall also take appropriate measures to:
g. ‘ensure organisations of persons, including children, with disabilities
are consulted when standards and guidelines for accessibility are being
developed’;
Draft Article 20 – mobility
The perception of mobility appears to be limited in this article. Mobility
is crucial for all
persons including disabled children to be active and participate in
all aspects of life.
Mobility is more than freedom of physical movement as such and needs
to embrace
daily life skills5 and communication, to mention a few aspects of life.
The concept of universal design seems to be quite western dominated
and we would
advise to consider diversity in geographic / economic context as well
as in life stages.
We wish to emphasise the access to technology with high quality standards,
effective
maintenance facilities and against affordable costs for a large group
of persons.
Draft Article 21 – health (and rehabilitation)
The coverage of both health and rehabilitation in one article is questionable
as it just perceives rehabilitation as a component of health. We suggest
to draft an article on health and a separate article on rehabilitation.
With regard to health we advise to follow a similar pattern as in the
education article. Aiming for accessible & quality health services
for all, including disabled children and adults, as the rule and specific
services as an exception to prepare for and support basic health services.
The entire article on health needs to be revised into a less medical-technical
language.
Suggested change
States Parties recognise that all persons with disabilities have full
access to health services and the right to the enjoyment of
the highest attainable standard of health without discrimination on
the basis of disability. In particular States Parties shall:
a. provide persons with disabilities with the same range and standard
of health services as other citizens, including sexual and reproductive
health services
b. develop understanding of disability rights, respect for diversity,
non-discriminatory attitudes and a realistic perception of the capacities
of disabled people as users of health services for health professionals
at all levels, in line with the principles of this Convention
c. involve children and adults with disabilities and their respective
organisations in the development and monitoring of health policies and
of a code of ethics for public and private health care, promoting quality,
transparency and respect for human rights at national level
d. strive to provide specific health services needed
by persons with disabilities to enable optimal development potential
and self-reliance in daily life
e. ensure that respect is afforded to children and adults with disabilities
to give consent to or refuse medical interventions of all kind, in accordance
with their evolving capacities. Arrange decision-making in accordance
with earlier articles in this convention.6
Draft Article 21a – rehabilitation
The access to basic rehabilitation is particularly important for disabled
children and all persons with recently acquired, chronic or progressive
disabilities. We advise that the recommendations of the International
Consultation to review CBR7 will be furthered in the final wording of
this article
Suggested change
States Parties shall take all appropriate measures to ensure access,
quality and utility of rehabilitation services. In particular, States
Parties shall:
a. facilitate the development of comprehensive rehabilitation strategies,
resources and services starting in the community and supported by secondary
and tertiary services, including the provision of respite places
b. develop rehabilitation strategies with disabled children and adults
which enable full development, prevention of secondary disabilities,
self-reliance in daily life, participation in all aspects of life and
society
c. promote co-ordination of rehabilitation services with basic services
in the daily life environment of children and adults with disabilities
preparing full participation in, and the development of inclusive services
d. ensure full participation of representative organisations of disabled
children and adults in the development of policies, strategies and programs
in rehabilitation ensuring these services to be responsive to the actual
needs of disabled persons
e. facilitate the mobilisation of democratic and representative of self-help
groups, disabled people organisations from the local to the national
level, representing diversity and countering discrimination among disabled
people
f. encourage research, dissimination and application of new knowledge
that will benefit persons with disabilities
Draft article 22 – employment
No major objections from a child perspective
Draft article 23 – social security
No major objections from a child perspective
Draft article 24 - Participation in cultural life, recreation,
leisure and sport
Participation in sport, recreation and leisure is a priority for many
disabled children and young people. We recommend a paragraph how the
right to play and recreation can be met.
Suggested changes
States Parties recognise the right of all persons with disabilities
to take part in cultural life, and shall take all appropriate measures
to ensure that persons with disabilities:
24.b. enjoy access to literature and other cultural materials in all
accessible formats, including in electronic text, sign language and
Braille, and in audio and multi media formats, and that such
access also extends to literature and cultural materials appropriate
for children with disabilities;
Suggested additional paragraph
24.4 States Parties recognise the right of persons with disabilities,
on an equal basis with others, to participate in recreational, leisure
and sporting activities, and shall take appropriate measures to:
24.4.a. ensure that children with disabilities have access to
age appropriate play and recreational facilities.
Draft article 25 – monitoring
No major objections from a child perspective.
Footnotes
Footnote 1: This concept relates to art 5, 6, 23 and 29 of the CRC
Footnote 2: This paragraph is related to art 12 of the CRC posing clear obligations on governments to ensure that children and young people are not passive recipients of adult protection, but that they have the right to have a say in all actions and decisions affecting them, from the family to the wider community level. However to date, too little action has been taken by governments around the world to ensure that the right to be heard extends to disabled children. ( Lansdown G. 2001 'Its Our World Too! A report on the Lives of Disabled Children for the UN General Assembly Special Session on Children, Disability Awareness in Action, London)
Footnote 3: Between 2000-200, Rights for Disabled Children, an international working group of disabled people's organisations undertook analysis of each government report due to be examined by the Committee on the Rights of the Child. It was found that although governments did seek to address the issue of children's participation, albeit inconsistently, they rarely, if ever, mentioned participation with regard to disabled children.
Footnote 4: communication disabilities does not only refer to those persons who are blind or deaf, but also to those persons who have a major problem to contact others, to express themselves, to filter and handle information for various reasons (eg. People with autism, severe spasticity, learning and intellectual impairments)
Footnote 5: eg child-rearing, running a household,
personal hygiene, recreation, accessing education, employment, etc
Footnote 6: in relation to our comments with
regard to article 9, 10, 13 of this draft convention
Footnote 7: WHO (2003) Report of International
Consultation to Review Community Based Rehabilitation, Helsinki, Finland
www.who.int/ncd/disability
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