Comprehensive and Integral International Convention on

the Rights and Dignity of Persons with Disabilities

Eighth Session of Ad Hoc Committee 14-25 August 2006

Report on Consultations with PWD Members and Stakeholders

August 2006

People with Disability Australia Incorporated

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AUSTRALIA

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Contents

  1. Introduction…………………………….. 3
  1. Articles with difficult issues remaining………………………...…... 5
  2. Article 2: Definitions……….…………………..… 5
  3. Article 12: Equal recognition before the law…………….. 7
  4. Article 17: Protecting the integrity of the person…………….. 8
  5. Article 25: Health…………...……………….. 10
  6. Articles 34-53: International monitoring……………………. 11
  1. Articles with some issues remaining………………..…………… 15
  2. Article 6: Women with disabilities……………………. 15
  3. Article 7: Children with disabilities…………………..… 15
  4. Article 11: Situations of risk …..………………………… 15
  5. Article 21: Freedom of expression and opinion, and access to information ………..…………………………………… 16
  6. Article 23: Respect for home and family……………………. 16
  7. Article 24: Education……………………………. 16
  8. Article 28: Adequate standard of living and social [protection] 17

4. Conclusion………….……………………………… 17

  1. Introduction

This report has been compiled prior to the Eighth Session of the Ad Hoc Committee for the International Convention on the rights and dignity of persons with disability, to be held in New York, 14-25 August 2006.

The recommendations in this report are the result of consultation with the members and staff of People with Disability Australia (PWDA), and a range of stakeholders from government and non-government organisations.

This report addresses the Working Text of the Convention developed from the Seventh Session of the Ad Hoc Committee (January - February 2006), in particular those articles identified by the Chair as having ‘difficult issues remaining’ or ‘some issues remaining’. Consequently the findings of this report relate to those articles that are still under debate at this stage of the process, rather than to the whole text, in keeping with the Chair’s statement that debate in the Eighth Session will deal only with articles that have issues remaining, and settled matters will not be revisited for discussion.

One area under major consideration during the Eighth Session is international monitoring of the Convention. In the revised text released after the Seventh Session, article 34 (international monitoring) was intentionally left blank. The Chair has since added 19 additional draft articles on international monitoring, based on discussion in the Ad Hoc Committee, submissions to it, and established practice in other treaty monitoring bodies. This report addresses international monitoring, drawing upon the views of PWDA members and recognised experts in the field.

PWDA has welcomed the opportunity to continue our participation in this historic process, and congratulates the Chair, the Ad Hoc Committee members and delegates for their energy and commitment to the on-going process of developing this visionary landmark document.

Background to this briefing document

PWDA has been involved in the development of the International Convention since the decision was made by the UN General Assembly to proceed with the development of the treaty in 2001. Participation has taken the form of close liaison with Australian NGOs, DPOs and Australian Government representatives. PWDA delegations have attended seven sessions of the Ad Hoc Committee to represent and advocate for the rights of Australians with disability.

PWDA has made a key contribution in the Australian context through its project management of two major national consultations in 2004 and 2005. These consultations sought responses of a broad range of stakeholders from the disability sector and human rights arena to the Convention and the draft text, and brought together written, on-line and telephone submissions with findings from workshops and focus groups held at centres around the nation. Funded through an Australian Attorney-General’s Department grant to the Australian Federation of Disability Organisations (AFDO) and with input from the National Association of Community Legal Centres, these consultations have informed the Australian Government of the disability sector’s response to the development of the Convention, and in so doing, have contributed to the position of the Australian Government.

PWDA has played other roles in providing information to the sector about the Convention. As well as organising seminars for members, PWDA, with the New South Wales Disability Discrimination Legal Centre and the Disability Studies and Research Institute, has organised several seminars for expert discussion and interpretation of the Chair’s text.

The current document draws upon these combined sources.

  1. Articles with difficult issues remaining

2.1 Article 2: Definitions

Definition of disability

The definition in the Working Text is as follows:

“Disability results from the interaction between persons with impairments, conditions or illnesses and the environmental and attitudinal barriers they face. Such impairments, conditions or illnesses may be permanent, temporary, intermittent or imputed, and include those that are physical, sensory, psychosocial, neurological, medical or intellectual.”

1. PWDA has argued for a definition that includes both a description of the disabling effects of socio-economic conditions and a broad and inclusive listing of impairment type, along the lines of that used in the Disability Discrimination Act 1992 (Commonwealth of Australia). This definition, which provides scope for remedies to human rights abuses to be nationally legislated, has become a model throughout the Asia-Pacific region.

In the spirit of moving the Convention forward, PWDA accepts the broad definition provided by the Chair. However, this definition must:

  • be based on the social model disability
  • reduce the potential for misinterpretation amongst States Parties
  • prevent some States Parties from being selective in their acknowledgement of disability, and provide an educative framework for their understanding of disability
  • be combined with reference to the needs of peoples with impairment, in order to address issues of entrenched cultural disadvantage that impact particularly women and children with disability in many developing countries and indigenous communities
  • acknowledge that disability may be ‘temporary, intermittent, episodic or imputed’.

2. PWDA recommends the adoption of the definition in the Chair’s Text with the following amendments:

  • that the opening be amended in this way: ‘disability, as experienced by a person, includes impairments, activity limitations and participation restrictions that result from the interaction between conditions or illnesses and the environmental and attitudinal barriers they face’, to make the definition more consistent with the ICF (an international statistical standard)
  • that the words ‘the environmental and attitudinal barriers’ be replaced with ‘the various barriers’, to cover all such barriers, whatever their source
  • that the words ‘congenital or acquired’ be added (i.e. ‘Such impairments, conditions or illnesses may be congenital or acquired, permanent or temporary…’) to facilitate a broad definition
  • that the word ‘episodic’ be added (i.e. ‘Such impairments, conditions or illnesses may be permanent, temporary, intermittent, episodic or imputed…’) to facilitate a board definition
  • that the word ‘psychiatric’ be included (i.e. ‘physical, sensory, psychosocial, psychiatric, neurological, medical or intellectual’), to represent the way people refer to their own disability, and others in the society refer to this disability.

Definition of ‘discrimination on the basis of disability’

1. PWDA recommends that the bracketed words ‘direct and indirect discrimination’ be placed close to the beginning of the definition, to emphasise their importance.

Definition of ‘reasonable accommodation’

1. PWDA recommends that the term ‘disproportionate burden’ be replaced with ‘unjustifiable hardship’, as the word ‘burden’ has highly negative connotations and does not reflect the progressive language and content of the Convention text. The more acceptable term ‘unjustifiable hardship’ also has accepted international legal status. The term ‘undue hardship’ is also an acceptable alternative, which accords with the UN ESCAP Joint Statement on this issue.

2. PWDA upholds that the highest possible international standards and benchmarks must be applied when considering terms such as ‘unjustifiable hardship’ to ensure that:

  • this article reflects the visionary nature of the Convention
  • the terms are not misused and misinterpreted.

2.2 Article 12: Equal recognition before the law

The difficult issues remaining with this article are those addressed in paragraph 2, surrounding supported decision-making. The Chair has provided two alternatives, as follows:

“[2. States Parties shall recognize that persons with disabilities have [legal capacity] on an equal basis with others in all fields and shall ensure that where support is required to exercise that capacity:

(a) The assistance provided is proportional to the degree of support required and tailored to the person’s circumstances, that such support does not undermine the legal rights of the person, respects the will and preferences of the person and is free from conflict of interest and undue influence. Such support shall be subject to regular and independent review;

(b) Where States Parties provide for a procedure, which shall be established by law, for the appointment of personal representation as a matter of last resort,such a law shall provide appropriate safeguards, including regular review of the appointment of and decisions made by the personal representative by a competent, impartial and independent tribunal. The appointment and conduct of the personal representative shall be guided by principles consistent with the present Convention and international human rights law.]

OR: alternative:

[2. States Parties shall recognize that persons with disabilities enjoy legal capacity1 on an equal basis with others in all aspects of life.

2 bis. States Parties shall take appropriate legislative and other measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.

2 ter. States Parties shall ensure that all legislative or other measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible, and are subject to periodic impartial and independent judicial review. The safeguards shall be proportional to the degree to which such measures affect the persons’ rights and interests.]

1. In a situation where supported decision making is required, PWD strongly supports the personal representation or guardianship model as a means of protecting the legal rights of people with disability, and recognises that this an essential component of an article on equal recognition before the law. It is, however, a mechanism that should be used only as a last resort.

As such, PWDA recommends the adoption of the first bracketed version in the Convention, with the proviso that the paragraph contain additional mechanisms to safeguard the rights of the individual. The safeguards include:

  • transparent mechanisms for establishing guardianship, so that the framework is not open to alternative interpretation by States Parties
  • reference to the capacity of the individual to act independently, and reassessment of such capacity for each decision making situation
  • a statement that personal representation should be a mechanism of last resort only
  • a robust appeals process, e.g. the right to appeal to a court a decision made by a guardianship or trusteeship tribunal
  • restriction on the types of decisions that can be made appropriately through personal representation, i.e. major life decisions (including voting, making a will, invasive medical procedures and end of life), should not be included.

2. PWDA argues that the first alternative above could be strengthened by including some of the provisions in the second alternative, in particular that these measures:

  • apply for the shortest possible time.

2.3 Article 17: Protecting the integrity of the person

This article addresses highly sensitive issues, with the most contentious of these in the bracketed fourth paragraph:

[4. States Parties shall ensure that involuntary treatment of persons with disabilities is:

(a) Minimized through the active promotion of alternatives;

(b) Undertaken only in exceptional circumstances, in accordance with procedures established by law and with the application of appropriate legal safeguards;

(c) Undertaken in the least restrictive setting possible, and that the best interests of the person concerned are fully taken into account;

(d) Appropriate for the person and provided without financial cost to the individual receiving the treatment or to his or her family.]’

1. PWDA recommends that further safeguards be included in this paragraph, in particular:

  • the right to prompt and automatic review of decisions regarding involuntary treatment by an independent judicial body or tribunal
  • the right of appeal
  • the right to legal and personal representation
  • the right to adequate procedural protections such as interpreters and access to appropriate, comprehensive records of decisions.

2. In addition, PWDA recommends that the following critical points be covered in the paragraph:

  • provision to ensure that full and informed consent is sought in relation to admission, examination, treatment and discharge from individuals with disability
  • the obligatory provision of full information on proposed treatments in appropriate accessible formats.

It may also be appropriate to restate the safeguards articulated in Article 12 in this article.

3. PWDA recommends that the current wording of the existing paragraph be expanded as follows:

  • to clause (a), add the words in italics: ‘Minimised through the active promotion of alternatives including adherence to wishes expressed in advance’
  • to clause (b)add the words ‘and only as a last resort, when all other alternatives have been considered’ after ‘Undertaken only in exceptional circumstances’
  • to clause (c), include the italicised words below ‘Undertaken in the least restrictive manner and setting possible, and with respect for the person’s rights, will and preferences’
  • to clause (d), include the words in italics: ‘Proportional and tailored to the person’s circumstances, for the shortest time possible, in the person’s best interests, effective, appropriate for the person and without financial cost to the individual receiving the treatment or his or her family.’

2.4 Article 25: Health

The remaining difficult issue is bracketed in the clause below.

“Provide persons with disabilities with the same range, quality and standard of free or affordable health services as provided other persons, [including sexual and reproductive health services] and population-based public health programmes;”

1. PWDA supports the inclusion of the words, ‘including sexual and reproductive health services’ in this clause, to recognise that:

  • people with disability are at higher risk of sexual abuse, and hence require targeted information and services
  • people with disability are often regarded as not having the same sexual needs as the wider community, and hence their sexual health needs may be ignored; this represents an opportunity to foreground these requirements
  • in the case of global epidemics (such as HIV/AIDS), the members of the most marginalised communities (including people with disability) are those at highest risk
  • the specific sexual and reproductive health needs of women with disability must be addressed due to the particular disadvantage brought about by the intersection of culture, gender and disability.

2. PWDA recommends that the article include reference to information and education on health issues, to address essential preventative health services.

2.5 Articles 32 – 53: International co-operation and monitoring

General comments

1. PWDA believes that the development of a robust treaty for the protection of the human rights of people with disability will be of little value without a comprehensive mechanism for monitoring its implementation. Monitoring must occur effectively at the international level in order to:

  • keep States accountable amongst the community of nations
  • influence national legislative agenda to provide mechanisms for systemic remedy of human rights violations against people with disability.

PWDA recognises that while it will be necessary to develop a monitoring mechanism that is specific to this convention, this mechanism needs to be flexible enough to accommodate the broader reforms to the international treaty monitoring system.

3. In the questions posed by the Chair, considerable emphasis is placed on the composition and activities of the Committee. Some of our respondents expressed the importance of emphasising the processes that occur within States Parties, rather than concentrating on the Committee per se. These respondents commented that particular emphasis should be placed on the three processes of monitoring, enforcement and implementation. In addition, co-operation with other human rights mechanisms should be a focus.

Article 32: International co-operation

PWDA considers international co-operation as a vital and essential element in the development, implementation and monitoring of this Convention.

In doing so, PWDA recognises that this article places a positive obligation on wealthier developed nations to transfer resources to developing nations to enable their compliance with the Convention.

However, such co-operation should not consist only of resources, but also of technical co-operation, information sharing, support, ideas and capacity building.

Questions posed by the Chair

1. On what basis should members of the Committee be elected?

PWDA supports the election of the Committee by an international constituency from representatives appointed by national parliaments, with the following provisions:

  • equal representation of specific population groups (including indigenous peoples) and balanced regional representation
  • representation of people with disability, and different types of disability, including intellectual disability
  • gender balance.

At the national level, PWDA argues that the election of representatives take place in collaboration with NGOs and DPOs, with the latter putting forward nominees for consideration of the parliament.

2. How large should the Committee be?

PWDA believes that the size of the Committee should be based primarily on consideration of its terms of reference. However, PWDA generally supports a Committee of between 18 and 23 members, in line with similar Committees. A membership of this size will enable the appointment of sub-committees and working groups as required.