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Article 12 - Equal recognition as a person before the law

Seventh Session

Comments, proposals and amendments submitted electronically

Governments

Canada

European Union

India

Kenya

Russian Federation

National Human Rights Institutions

National Human Rigths Institutions

Non-governmental organizations

Inclusion International and International Disability Caucus

Japan Disability Forum

National Association of Community Legal Centres (NACLC)

People with Disability Australia

Comments, proposals and amendments submitted electronically

Governments

CANADA

Article 12

1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.

2. States Parties shall recognize that persons with disabilities ENJOY [delete: have] legal capacity on an equal basis with others in all ASPECTS OF LIFE. [DEL: fields, and shall ensure, to the extent possible, that where support is required to exercise [that capacity] [the capacity to act:]]

[DEL paras. (a) and (b)]

2bis [Based on IDC proposal]. STATES PARTIES SHALL TAKE APPROPRIATE LEGISLATIVE AND OTHER MEASURES TO FACILITATE ACCESS BY PERSONS WITH DISABILITIES TO ANY SUPPORT THEY MAY REQUIRE IN EXERCISING THEIR LEGAL CAPACITY, AS WELL AS TO PROVIDE APPROPRIATE SAFEGUARDS TO PREVENT ABUSES IN THE PROVISION OF SUPPORT.

3. States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities, INTER ALIA, to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property.

EUROPEAN UNION

Article 12

1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.

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

EU Comment (2)chapeau: The EU can accept “legal capacity” in line 2 and either of the formulations in the square brackets at the end of the chapeau.

EU Proposal (2)chapeau: Delete “to the extent possible” to strengthen the text.
(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. Where appropriate, 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 this Convention and international human rights law.]

EU Comment (2)(b): The EU would like to maintain the safeguards outlined in sub-paragraph 2(b) but is aware that some work needs to be done on the wording. In particular, the EU would like to avoid the language “personal representation” but is flexible about how this is achieved.

3. States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit; and shall ensure that persons with disabilities are not arbitrarily deprived of their property.

Draft EU Position elaborated together with Canada, Australia, Norway, Costa Rica, USA, Liechtenstein

1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.

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

3. 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.

4. States Parties shall ensure that all legislative or other measures which 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 person’s rights and interests.

5. States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own, inherit or dispose of property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit; and shall ensure that persons with disabilities are not arbitrarily deprived of their property.

EU Comment

(2)chapeau: The EU can accept “legal capacity” in line 2 and either of the formulations in the square brackets at the end of the chapeau.

EU Proposal

(2)chapeau: Delete “to the extent possible” to strengthen the text.

EU Comment

(2)(b): The EU would like to maintain the safeguards outlined in sub-paragraph 2(b) but is aware that some work needs to be done on the wording. In particular, the EU would like to avoid the language “personal representation” but is flexible about how this is achieved.

INDIA

Intervention on Para 12
18.1.2006 (Morning)

We support the Chair’s text in both para 1 and the Chapeau to Para 2. However, the proposal made by Yemen to split the Para in 2 sentences is also acceptable to us. We would support the retention of the phrase ‘to the extent possible’ keeping in view the fact that the number of disabled in our country is over 20 million.

The idea that the assistance provided is proportional to the degree of support required indicates that the state has an important duty to assess the status of health of the person with disability most particularly the intellectually challenged. This requires regular review of decisions on the basis of medical status of the disabled. It is the obligation of the State to address both the concerns of society and at the same time the implementation of the rights of an individual. An important periodic review in our view would satisfy the societal and individual needs and obligations. We therefore support 2b.

My delegation would also support the view expressed by delegation of Kenya in that we have to recognise that at times persons with disabilities do not in fact have the legal capacity to act independently. We feel that we have to provide for this because it is the obligation of the State to protect all parties involved.

KENYA

Article 12

EQUAL RECOGNITION AS A PERSON BEFORE THE LAW

1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.

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

RUSSIAN FEDERATION

Article 12, para.1

“Every person with disability have the right to recognition everywhere as person before law”.

National Human Rights Institutions

NATIONAL HUMAN RIGHTS INSTITUTIONS

Article 12, para 2

after the words "in all fields"...

States parties shall ensure that, in their laws relating to civil and criminal responsibility, disability shall not, as such, constitute the basis for the non-ascription of responsibility.

Non-governmental organizations

INCLUSION INTERNATIONAL and INTERNATIONAL DISABILITY CAUCUS (IDC)

Intervention on Article 12

Mr Chairman

I speak on behalf of the International Disability Caucus and Inclusion International on Article 12 the Equal Recognition as a Person before the Law. I am a person with an intellectual disability who for many years did not receive this recognition. As a result I was placed in institutional care when I was very young.

I remember living in one place where I was treated so badly that I often ran away and hid under a hedge until the Welfare Officer found me. He kept taking me back even though he knew I was being abused. Finally I was moved on but nothing happened to the people who abused me. Forty years later I am still angry about that. I tell this story so that you will understand how it has really been for me and my friends.

The very laws that were put in place to protect us were in effect used to abuse us, our rights were denied to us and any dignity that we may have had was taken away from us.

Mr Chairman, I know that the time for rhetoric is over, but we must never forget why we are really here. This Convention is not just about our rights, it is also about our lives. I see a danger that we will get caught up in the words and the negotiating and forget why we are really doing this work.

I represent many people who cannot come to this place to have their say. They cannot even have a say in their daily lives. Someone else is appointed to do this. Someone is appointed as their legal representative or their guardian even though they are no longer a child.

On behalf of these friends I have a very simple message to this Committee.

The time for the appointment of personal representation as a matter of last resort is over. The world is moving on and we are seeing a paradigm shift to supported decision making. This Convention will be around for the next 20 years and needs to reflect modern practice rather than be based on outdated concepts of protection. In the past this type of law has not kept us out of institutions, instead it has often been the reason why many of us have been placed and then kept in an institution against our will.

It has been this so called protection that has lead to so much misery for me and my friends. I respectfully ask that if the appointment of personal representation as a matter of last resort is likely to be retained, then this Committee takes more time to discuss with us how supported decision making can be used instead.

This can apply for all people who need assistance, without any exceptions. I believe no-one must ever have their legal capacity or the capacity to act taken from them.

It is part of their personhood; it is part of what makes them the unique person they are. Therefore no person or state should have the right to take this away from a fellow human being.

Robert Martin

IDC
Article 12
Chairman’s text amended by the IDC
EQUAL RECOGNITION AS A PERSON BEFORE THE LAW

1. States Parties reaffirm (ADD: “and shall recognize”) that persons with disabilities have the right to recognition everywhere as persons before the law.
(JUSTIFICATION: complement preambular language with language of obligation.)

2. States Parties shall recognize that persons with disabilities have (ADD “and are entitled to exercise full”) legal capacity (ADD: (capacity to act)) on an equal basis with others in all (REPLACE “fields” BY “aspects of life”) (DELETE: “and shall ensure, to the extent possible, that where support is required to exercise that capacity:”).

(JUSTIFICATION: “To the extent possible” should be deleted because it allows States Parties to say that compliance is just not possible. If resource limitations are a concern, any elements subject to progressive realization are addressed in article 4.
Exercise of legal capacity, full legal capacity and specific mention of the capacity to act are all necessary to ensure that legal capacity is properly understood to mean legal autonomy, the right to make one’s own decisions.)
“All aspects of life” is better than “all fields” for understanding in plain language.)

(REPLACE (a) BY NEW PARAGRAPHS 3 AND 4:: “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. Where appropriate, such support shall be subject to regular and independent review;)

(NEW 3. States Parties shall ensure that persons with disabilities are entitled to use support to exercise legal capacity, and that such support meets the person’s requirements, does not undermine the rights or freedoms of the person, respects the will and preferences of the person, and is free from conflict of interest and undue influence.)

(JUSTIFICATION: The last sentence of paragraph 2a implies guardianship-like decision making, which then can/shall be periodically reviewed. This is too prescriptive, and has the message for the States Parties that if they have regular and independent review of guardianship prescribed under their domestic laws then they comply with the Convention.)

Entitlement to use support to exercise legal capacity leaves the choice up to the individual, while “where support is required to exercise legal capacity” suggests that someone other than the person with a disability can decide whether support is “required”.

Terms like “degree of support required” and “tailored to the person’s circumstances” suggest decision-making about the person, rather than facilitating self-determination. Ensuring that support “meets the person’s requirements” is more empowering of persons with disabilities who are using support.)

(NEW 4. States Parties shall enact legislation and devise suitable procedures to facilitate access to, while preventing abuse of, supported decision-making.)

(JUSTIFICATION: This paragraph addresses concerns that States Parties must be proactive in developing measures to facilitate access and prevent abuse, without being overly prescriptive. It should be noted that the obligation to ensure that support meets standards designed to prevent abuse and facilitate self-determination is already included in paragraph 2a of the chair’s text, which the IDC has redrafted as paragraph 3.)
¬
[(DELETE (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 this Convention and international human rights law.”]

(JUSTIFICATION: Paragraph 2b is just the legitimization of guardianship and must be deleted.)

(NEW 5 (OR PLACE THIS PARAGRAPH IN ARTICLE 7): ““States Parties shall take all appropriate measures to ensure that children with disabilities shall be registered immediately after birth, and shall have the right to a name and the right to acquire a nationality.”

(JUSTIFICATION: There is a need to include a provision requiring governments to take the necessary measures to ensure that children with disabilities are registered at birth. This right is contained in the CRC, but children with disabilities are disproportionately likely not to be registered. This denies them citizenship, often also denies them access to health care and education, and can even lead to their death with relative impunity, because there is no official record of their existence. This provision could be included here or in the separate article on children with disabilities.)

6. States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit; (DELETE “and shall ensure that persons with disabilities are not arbitrarily deprived of their property”).

(JUSTIFICATION: Most often substituted decision-making is used to deprive people with disabilites of their property and make them dependent on the substitute decision-maker. Singling out this area implies that the Convention will endorse substituted decision-making and this paragraph is used to protect those under guardianship from abuses in these particular, though vitally important, affairs.)

(NEW 7. “States Parties shall recognize that women with disabilities have a legal capacity equal to that of other adult persons, and shall ensure that women with disabilities have equal opportunities to exercise that capacity. In particular, States Parties shall ensure that women with disabilities have the right to conclude contracts, to administer property and to sign legal documents, and shall treat them equally with all other adult persons in all stages of procedure in courts and tribunals.

(JUSTIFICATION: This wording is based on CEDAW article 15 (2))

IDC Modification
Article 12, Draft EU Position elaborated together with Canada, Australia, Norway, Costa Rica, USA, Liechtenstein

1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.

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

3. 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.

4. States Parties shall ensure that (DELETE: all legislative or other measures which relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law) (ADD: legislative and other measures are taken to establish effective safeguards to prevent abuse of support in exercising legal capacity). Such safeguards shall ensure that (DELETE: measures relating to) (ADD: support in) the exercise of legal capacity respects the rights, will and preferences of the person, (DELETE: are) (ADD: is) free of conflict of interest and undue influence, (DELETE: are) (ADD: and is) proportional and tailored to the person’s circumstances (DELETE:, 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 person’s rights and interests.)

CHANGED PARAGRAPH TO READ:
States Parties shall ensure that legislative or other measures are taken to establish effective safeguards to prevent abuse of support in exercising legal capacity. Such safeguards shall ensure that support in the exercise of legal capacity respects the rights, will and preferences of the person, is free of conflict of interest and undue influence, and is proportional and tailored to the person’s circumstances.

JUSTIFICATION: The original paragraph would legitimize guardianship and substituted decision-making. Our proposal places safeguards in the context of support and preserves the paradigm shift that IDC is seeking.

Requiring safeguards in “measures which relate to the exercise of legal capacity” is not the same as an obligation to establish safeguards to prevent abuse of support. “Measures which relate to the exercise of legal capacity” would include judicial limitation of the exercise of legal capacity and appointment of a personal representative or guardian.

Requiring that safeguards be “proportional to the degree to which such measures affect a person’s rights and interests” implies measures that restrict, rather than facilitate, the exercise of legal capacity.

The provision that such “measures” should apply for the shortest time possible and be subject to judicial review is also consistent with guardianship rather than support. Support should be freely available and not time-limited.

We also object to the provision that safeguards to prevent abuse must be “in accordance with international human rights law.” There exist no standards in international law related to support in decision-making. Such a provision could only refer to soft-law documents addressing guardianship, and would further strengthen the interpretation of “measures which relate to the exercise of legal capacity” to mean guardianship and substituted decision-making.

JAPAN DISABILITY FORUM (JDF)

Article 12 EQUAL RECOGNITION AS A PERSON BEFORE THE LAW

1. Paragraph 1 of Article 12 should be revised as follows:
[Proposal for a new Paragraph 1 of Article 12]

1. Persons with disabilities have the right to recognition everywhere as persons before the law. Further, persons with disabilities are entitled to use support required to exercise legal capacity and have access to supported decision-making. In order to ensure the realization of these rights and entitlements, State Parties shall adopt legislative, administrative, judicial and other measures aimed at ensuring,inter alia, that the support to exercise legal capacity of persons with disabilities meets the person’s requirements, does not undermine the rights and freedoms of the person, respects the will and preferences of the persons, and does not cause conflict of interests and undue interference.
[Reason] Article 2 (a) of the Chairman’s draft presupposes a system of guardianship, but since such a system deprives legal capacities from persons with disabilities, it should be modified based on the concept of supported decision-making. Moreover, it is desirable to delete Paragraph (b), since the system of personal representative should be disaffirmed, although in Japan such a system does not exist. Therefore, the Article needs to be modified. In the newly proposed draft, Paragraph 3 of the Chairman’s draft will become Paragraph 2.

NATIONAL ASSOCIATION OF COMMUNITY LEGAL CENTRES (NACLC)

Article 12 – Equal recognition as a person before the law.

This Article deals with concepts at the core of the rights of people with disabilities as human beings and the exercise of those rights. It is vital that this Article be clear in its intended scope and meaning and provides clear guidance to States Parties on the circumstances in which support or intervention may be permissible and on the appropriate safeguards for such support or intervention.

This is, in our view, an article that needs to be right; it is not enough to ask the question ‘can we live with it?’

Distinguishing between legal capacity and the exercise of that capacity
In the covering letter, the Chair asks delegations to specifically consider this Article in order to appropriately resolve how to distinguish between the legal capacity of all
persons and the exercise of that capacity, which may require some assistance in
certain circumstances.

The NACLC is of the opinion that the Article in its current form achieves this objective.

Article 12(1) sets forth the fundamental principle that people with disability have a
right to recognition as persons before the law.

Article 12(2) is narrower, and relates to one aspect of recognition before the law: legal capacity. It recognises that all persons have legal capacity, however that there may be circumstances in which a person’s disability prevents them from exercising legal capacity, due to an inability to engage with or understand the legal process. This provision then provides, in sub-paragraph (a), the obligation to ensure that all attempts are made to support and encourage the participation of any individual in the exercise of their legal capacity and provides for procedural safeguards in this process. It provides, in sub-paragraph (b), a mechanism more specifically for substituted decision making with procedural safeguards.

In effect, Article 12(2) provides guidance on the way in which accommodations are to be implemented with respect to the exercise of legal capacity. This is not a circumstance where there should be any limit on the duty to provide reasonable accommodation.

Therefore Article 12(2) does not detract from the fundamental principle that a person has a right to recognition under the law, but instead establishes safeguards to prevent derogation from that recognition in the event that a person is unable to fully exercise their legal capacity.

Supported and substitute decision making

The NACLC understands Article 12(2)(a) as a reference to supported decision-making in situations where a person’s disability inhibits their ability to exercise their legal capacity. The NACLC suggests that the Article would benefit from explicitly referencing supported decision-making. Consideration could also be given to noting that the matters to be considered are not simply the degree of support but also the nature of the support required. The Article is unclear in the intended meaning of and obligations arising from ‘respects the will and preferences of the person’. This could be understood to mean to have regard to the person’s views, but not to be bound by them, or to mean to have regard to and be bound by those views. While formal mechanisms such as advance directives and enduring wills provide one mechanism for persons with disabilities to bind others to their will and preference into the future, these do not cover the field as they rely on capacity at the time of making.

It is important to consider the continuum of support that may be provided to a person in a decision-making process. Many people with disabilities have advocates who assist them in decision making through ensuring that the person with a disability has the information available to them to understand, to the extent possible, the decision to be made and the potential impacts of that decision. Another role of advocates is to ensure that the views and wishes of the person with a disability are being heard when decision-making has been taken out of their hands. Their role is not to become the decision maker but may be seen as verging on a supportive decision-making role.

Along the continuum is a person in a supportive decision-making role, who should, to the extent possible, be bound by the person’s will but where there are significant risks and the person is unable to demonstrate an understanding of those risks, they should base their decisions on the person’s best interests. To some extent, this area of the continuum may well be best focussed on those areas of decision making that are day to day and likely to have limited long-term and serious impact on the person’s life.

Finally, the substitute decision maker is empowered to make the decisions in the best interests of the person with a disability. While they may have regard to the views of the person, they are not bound by those views.

Ideally, for the conceptual consistency of the Convention, Article 12(2) should expressly refer to an unlimited duty to reasonably accommodate and 12(2)(a) should merely set out the procedural safeguards where support is provided to a person with a disability in their exercise of legal capacity. Further, there are concerns about the ability to achieve effective support for decision-making that is free from conflict of interest. At least in some areas of life, the support will come from family members and friends. These people may well be the most appropriate to give the support but clearly have an interest that may, at time, be different from that of the person with the disability.

The NACLC notes the inclusion of the qualification ‘Where appropriate’ in Article
12(2)(a). Presumably it is included to cover situations where a person’s disability is perceived to permanently inhibit their ability to exercise legal capacity. The NACLC submits that regardless of this perception of permanence, where the exercise of legal capacity is either supported or substituted, independent review is vital to ensure the exercise of the right to capacity is genuinely respected, supported and monitored.

The NACLC understands Article 12(2)(b) as a reference to substituted decisionmaking. Given that there will be circumstances where substituted decision-making powers may be required, the NACLC believes it is essential that the protective provisions that are expressed in Article 12(2)(b) be retained. The importance of a competent, impartial and independent tribunal to assess the appointment and decisions of a substituted decision-maker cannot be overstated. It may be useful to make it clear that ‘last resort’ should encompass the existence of credible evidence of incapacity and a current need for a substitute decision maker to be appointed. The NACLC also suggests that this provision would benefit from explicitly referencing the term ‘substituted decision making’.

An option for reframing Article 12(2) is to set out the obligation to provide reasonable accommodation in the head paragraph of the article, and to set out the principles to guide both supported and substitute decision making in one sub-paragraph, and the principles to govern appointment, monitoring and review of supported and substituted decision making in a second sub-paragraph.

Recommendation 7
That Article 12(2) be amended to ensure the express recognition of the right
to reasonable accommodation in the exercise of legal capacity.

Recommendation 8
That the text ‘[legal capacity]’ be included in Article 12(2) and the words ‘the capacity to act’ be deleted with ‘that capacity’ retained.

Recommendation 9
That the terms ‘supported decision making’ and ‘substituted decision making’ be used in Article 12(2).

Recommendation 10
That serious consideration be given to restructure of Article 12(2) to set out the obligation to provide reasonable accommodation for the exercise of legal capacity in the head paragraph of the article, and to set out the principles to guide both supported and substitute decision making in one sub-paragraph, and the principles to govern appointment, monitoring and review of supported and substituted decision making in a second subparagraph.

PEOPLE WITH DISABILITY AUSTRALIA (PWDA)

Article 12

Intervention

(Australian) National Association of Community Legal Centres

Mr Chairperson:

This intervention is made on behalf of People with Disability Australia and the Australian National Association of Community Legal Centres. Thank you for the opportunity to address the Ad Hoc Committee.

A legal mechanism that will allow, as a last resort, the formal appointment of a person with the responsibility to make particular decisions on behalf of a person unable to make decisions for themselves is essential for the realisation of the human rights of persons with disability. We therefore urge the Ad Hoc Committee to retain paragraph 2(b) of draft article 12.

In the absence of such a mechanism State Parties will be unable to ensure equality of access to medical and dental services for persons unable to consent to treatment, and will lack a crucial legal mechanism to protect particular individuals from abuse, neglect and exploitation – particularly where this is at the hands of persons in close personal relationship with them, such as a spouse, parent, or other family member.
Although the support networks of an adult with severe disability should be empowered as much as possible to act in the interests of the person without having to resort to formal guardianship arrangements, it is unrealistic and dangerous to assume that persons with disability will always be protected by those closest to them.

There is, however, no question that there is enormous potential for abuse and neglect within guardianship arrangements. In many parts of the world, there remain unreformed guardianship regimes that are unnecessarily plenary and permanent in nature, invest responsibility for decision making in persons with conflict of interest, are not subject to appropriate review, and are associated with institutionalisation and abandonment, among many other problems. Even reformed guardianship systems must never become complacent. It is therefore essential that this convention mandate the reform and modernisation of guardianship systems, and provides the foundation for the recognition and further development of guardianship standards that will provide for the individual tailoring of substitute decision making only to what is absolutely necessary, and only for as long as it is necessary, and which provide stringent safeguards against abuse.

In this respect we note that the last sentence of paragraph 12.2(b) refers to the requirement for guardianship arrangements to comply with international law. At this stage, there really is no ‘hard’ international law in this area, although there are important standards set out in particular declarations and principles established by the international community. To ensure that these standards are recognised and incorporated into this convention we suggest that the words “and standards” be added immediately following the reference to international law. This will also provide for the ongoing development of standards in this area post finalisation of this convention.

Finally, we note that a foundation principle governing the development of this convention is that it not derogate from existing international law protecting persons with disability. In our view, failure to ensure in this convention that substitute decision-making arrangements are subject to rigorous safeguards would erode existing protections against the abuse and neglect in guardianship arrangements contained in the documents to which we have just referred.

Thank you for the opportunity to address the Ad Hoc Committee.

PWDA
Article 12
Report on National Consultations
This article was debated extensively by participants. Participants strongly affirmed that the convention must assert the right of people with disability to equal recognition as persons before the law and as having legal capacity. However, there were some differences of opinion on the inclusion of substitute decision-making and the need to strengthen commitments to supported decision-making in the article.

Participants recognised that for many adults with disability substitute decision-making (or adult guardianship or trusteeship) has resulted, and continues to result in, the denial of the legal capacity of the individual with disability, and in abuse and neglect of their human rights. The participants in the focus group for people with intellectual disability, for example, indicated that there can be situations where guardianship can be forced on a person and that there are many people with disability who do not need assistance with decision-making, although there are some people who do need assistance. However, there needs to be an informed choice made by people with disability about this type of assistance. In particular, this group indicated that people, where necessary, must be supported to the greatest degree possible to make decisions for themselves and that there must be opportunities for skills development in decision-making for people who require this.

Other participants also pointed out that the absence of decision-making arrangements for adults with disability have also resulted in extensive exploitation, abuse and neglect. The many forms of exploitation, abuse and neglect were documented in the 2004 Australian consultation report and were re-iterated by participants in this consultation. These include exploitation of the person’s financial resources, sometimes even by family members, failure to perform beneficial medical and dental procedures on the basis that there is no-one to consent or advocate for them, and failure to protect against harmful or unnecessarily restrictive interventions, for example, non-therapeutic sterilisation, polypharmacy, aversive behaviour management procedures etc.

The majority of participants argued that if the right to appropriate safeguards, through substitute decision-making are not contained in the convention then people will continue to be subjected to human rights abuses and exploitation. This position was strongly expressed by the peak mental health consumers’ organisation, the Australian Mental Health Consumers Network in particular.

However, a few participants, including a representative of the World Network of Users and Survivors of Psychiatry indicated there was not support for substitute decision-making per se as this detracted from a person’s right to make decisions, irrespective of their capacity to do so. Rather, it was argued that in all instances supported decision-making is preferable and that resources needed to be made available to facilitate this.

The majority of participants, however, were strongly of the view that substitute decision-making – with appropriate legal safeguards - is essential to protect and promote the rights of some people with disability, and that this needs to be a mechanism of last resort.

Most participants recognised that this article infers that people with disability have legal capacity and recognises that people may require additional support or assistance to exercise this right. Further, that such support is based on the individual needs of the person, does not undermine the decision-making capacity of the person and shall be subject to appropriate review.

Participants were unclear as to the intent of the words ‘to the extent possible’ in paragraph 2 of the article. Some argued that the text was intended to give effect to paragraph 2, sub paragraph (b) of the article. However, participants were strongly opposed to the inclusion of the text, if the intent is to qualify the level of assistance that might be provided and to limit resources provided in supported or substitute decision-making.

The way in which the article may be interpreted in relation to people whose decision-making capacity may change was also discussed by participants. Participants, including the Australian Mental Health Consumers Network and the Mental Health Legal Centre argued that the convention should impose an obligation on States Parties to enable people whose decision-making capacity may change to make wills or give directives as to the type and level of care and support that is required by them. In this sense, the article will give optimum effect to people’s self determination by allowing people, when well, to make decisions about how their affairs will be conducted if they are deemed to lack capacity. To this end, participants recommended an amendment to article 2 to read ‘… that where support, including use of instruments such as living wills/advance directives is required…’.

Participants in the focus group with people with intellectual disability argued that there needs to be checks and balances in place to ensure that substitute decision-making is not abused and people are not taken advantage of. In addition, this group, and other participants argued that there needs to be processes to review and appeal a decision and that people with disability must be given appropriate support to do so. Participants noted that paragraph 2 (a) includes the text ‘where appropriate’. Participants indicated that while it is welcome that there is provision for independent review of supports, it will always be necessary and appropriate for people to have access to such review. The Mental Health Legal Centre, for example, recommended including an alternate statement to the effect that ‘such supports shall be subject to independent review, on application by the persons and automatically at appropriate regular intervals’. This encapsulates the essential right for a person wishing to challenge supports to do so, as well as recognising the reality that many people with disability may be unable to initiate a review themselves.

As indicated above, there was extensive debate on the need for, and inclusion of, provisions for substitute decision-making. The World Network of Users and Survivors of Psychiatry argued that the network did not support substitute decision-making and on this basis, paragraph 2 (b) should be deleted. However, majority of the participants indicated that substitute decision-making will continue to occur and that there must be safeguards in place to ensure that this is undertaken with full effect to people’s human rights. To this end, most participants recommended the inclusion of paragraph 2(b).

However, participants also pointed out that (similar to the argument in 2(a) above) that reviews, as one safeguard, need to be available both at the request of the person and at regular intervals. In addition, participants argued for the need for appeal rights from guardianship or trusteeship tribunals to a court. To this end, the following amendments to paragraph have been suggested ‘… including review, at the person’s request and at regular intervals, of the appointment …’ and ‘… appeal rights from the independent tribunal to a court of law must be available’.

Participants also pointed out that people with disability must have access to appropriate and free advocacy, including legal advocacy. It was pointed out that Principle 1(6) of the United Nations Principles for the Protection of Persons with Mental Illness and Improvement of Mental Health Care makes this provision. Participants re-iterated support for an addition sub-paragraph recommended in the 2004 Australian consultation to this effect.

Recommended text

1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.

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 independent review on application by the persons and automatically at appropriate regular intervals of the appointment. Such reviews shall be subject to appeal rights from the independent tribunal to a court of law.

(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
(i) regular review of the appointment of and decisions made by the personal representative by a competent, impartial and independent tribunal.
(ii) The appointment and conduct of the personal representative shall be guided by principles consistent with this Convention and international human rights law.
(iii) Such safeguards shall be subject to independent review on application by the persons and automatically at appropriate regular intervals of the appointment.
(iv) The person shall have free access to legal aid in relation to any proceeding dealing with their legal capacity, including an appeal from such proceedings, and in relation to a decision to be taken pursuant to a finding of incapacity.

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