Equal recognition before the law and equal capacity to act: understanding and implementing Article 12 of the UN Convention

on the Rights of Persons with Disabilities

EDF Position paper - October 2009

In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations. Article 4, paragraph 3 of the Convention on the Rights of Persons with Disabilities

European Disability Forum

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List of contents
1. Introduction .......................................................................................................3 2.Concepts.............................................................................................................4 2.1.Equal recognition before the law...........................................................5 2.2.Legal capacity.......................................................................................5 2.3.Support in exercising legal capacity......................................................6 2.4.Safeguards............................................................................................6 3.Eight steps for achieving equal recognition before the law .........................7 3.1.Promotion and support of self-determination of people with disabilities 7 3.2.Replacing traditional guardianship by a system of supported decisionmaking...........................................................................................................8 3.3.Developing a system for supporting decision-making.............................8 3.4.Selection and registration of support persons.........................................9 3.5.Overcoming communication barriers.....................................................10 3.6.Preventing and resolving conflicts between supporter and supported person..........................................................................................................11 3.7.Implementing safeguards......................................................................11 3.8.Using mainstream mechanisms for the protection of the best interests of a person .................................................................................................12 Acknowledgements.............................................................................................12 APPENDIX About EDF and other documentation .......................................13 A.1 About EDF..................................................................................................13 A.2 Contact person at the EDF Secretariat:.....................................................13

EDF October 2009, EN Equal recognition before the law and equal capacity to act: understanding and implementing Article 12 of the UN Convention on the Rights of Persons with Disabilities The document is available in English, French or in large-print upon demand from the EDF Secretariat, and on the EDF website at: www.edf-feph.org Copyright European Disability Forum 2009. This document may be quoted and reproduced, provided the source is given.

Equal recognition before the law and equal capacity to act: understanding and implementing Article 12 of the UN Convention on the Rights of Persons with Disabilities European Disability Forum, October 2009

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1. Introduction
The European Disability Forum (EDF) is the umbrella body of the European disability movement representing the interests of 50 million disabled Europeans and their families a diverse group made-up of persons with various disabilities, such physical, sensory, intellectual, psychosocial disabilities, and people with complex and multiple disabilities. The United Nations adopted in December 2006 the Convention on the Rights of Persons with Disabilities (hereinafter CPRD) that entered into force on 3 May 2008. A Convention is an internationally agreed legally binding treaty, which provides directions for the international community. It is a tool and a driver for domestic changes. One of the core messages of the CRPD is that persons with disabilities are not objects but human subjects deserving equal respect and treatment. 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 legal capacity on an equal basis with others in all aspects of life. 3. States Parties shall take appropriate 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 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 regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person's rights and interests. 5. Subject to the provisions of this article, 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. Article 12 of the CRPD demands equal recognition before the law for all
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persons with disabilities and reaffirms that they all, irrespective of their kind and degree of disability, have an inalienable right to exercise their legal capacity on an equal basis with others in all aspects of life. The Article further demands that people with disabilities who need support in taking decisions shall be provided with a system of supported decision-making. The concept of supported decision-making is new to most jurisdictions, as it does away with the concept of traditional guardianship where the persons decision-making power is delegated to a legal guardian. The new approach codified by the Convention in Article 12 also informs interpretation of other rights of the Convention, such as Article 13 (access to justice1), Article 14 (liberty and security of person), Article 16 (freedom from exploitation, violence and abuse), Article 19 (living independently and being included in the community), Article 22 (respect for privacy), Article 25 (health) and many others. Overall, the new legal order established by the Convention will require extensive reforms in national laws and practices on guardianship and legal representation based on substitute decision-making. This position paper aims to provide guidance to States Parties by identifying eight key elements that should guide the implementation of Article 12 of the Convention.

2. Concepts
No individual in any society is truly independent of the influence of others. Social structures and hierarchies, the need for positive attention, economic necessities, and the complexity of many financial, healthcare and personal decisions often make non-disabled and disabled citizens dependent on others for support in making decisions. Examples are financial consultants, medical doctors, architects and all the other professions that provide expertise to all citizens. Many people take decisions for themselves that are also not in their best interest. Often they are determined by factors that are not logic-based: commercial advertisements, the wish for social status, the preference for nice fast cars, etc. Disabled or not, all persons have the right to make mistakes. However, in a situation when somebody is advising another person on a decision or exercising powers of decision-making delegated to him/her by this person, extra due diligence must be applied to accept and acknowledge the wishes and requests of the advised individual. Maintaining the full legal capacity of the individuals must always be in the centre of the discourse. Article 12 of the CRPD introduces a number of key concepts that must be understood and interpreted in uniform fashion in order to meet the high implementation standards of the Convention. 1 For example, the need to revise the insanity defence in criminal proceedings and replace it with
disability-neutral standards for adjudicating criminal responsibility.

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2.1.

Equal recognition before the law

The notion of equal recognition before the law is wider than legal capacity (the concept that is also present in Article 12). It builds on other human rights treaties, mainly on Article 6 of the Universal Declaration of Human Rights and on Article 16 of the International Convent on Civil and Political Rights (ICCPR), which states that everyone shall have the right to recognition everywhere as a person before the law. Article 12 CRPD sets the principle that all disabled people, like other citizens, have the right to have their status and capacity recognised in the legal order. In enables all persons to hold, exercise and benefit from equal and inalienable rights irrespective of the nature and degree of their disability. Legal personhood is therefore intended as a characteristic inherent to human beings . Without this right, the individual would no longer be a person in the legal sense and thus be deprived of all other rights2.

2.2.

Legal capacity

Legal capacity in the sense of Article 12 is understood as evolving capacity to exercise these equal rights and includes the capacity to act. This applies to the legal systems of all countries for all people, irrespective of the nature or degree of their disability or apparent need for support. Under Article 12 CRPD, legal capacity cannot be challenged or denied based on the disability of a person. Instead, support measures to exercise legal capacity may have to be provided whenever needed. The evolving nature of legal capacity is demonstrated with the following example: all children, including those with disabilities, have an evolving legal capacity, which at birth begins with full capacity to have rights, and evolves into full capacity to act in adulthood. At birth, their full capacity to have rights includes, for example, the right to life and to receive the best available treatment regardless of the nature and severity of their disability 3. As the child develops, so does their legal capacity, and they have the right to be provided with age- and disability-appropriate supports to exercise it on an equal basis with non-disabled children, including in relation to the right to bodily integrity and reproductive choice4. Parents and guardians have the right and the responsibility to act in the best interests of their children while respecting the childs evolving legal capacity. Their automatic right to act on behalf of their children ceases when the child reaches the legal adult age.

2 See M. Nowak, U.N. Covenant on Civil and Political Rights : CCPR Commentary,
2nd revised edition, N.P. Engel Publisher, 2005, p.369.

3 Cf. EDF Resolution on Active Termination of Life of Infants with Impairments and
on the Right to Life, adopted at the EDF Annual General Assembly on 28 May 2006 in Rome.

4 Such as the right of children, and in particular girls, with disabilities not to
undergo non-therapeutical sterilisation before reaching the age of consent.
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2.3.

Support in exercising legal capacity

Supported decision-making as enshrined in Article 12 starts from the presumption of full and equal legal capacity of all citizens, including those with severe and profound levels of disability. The Convention provides that the States Parties take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity (Article 12.3) and ensure that all measures that related to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse (Article 12.4). In accordance with the international human rights law, the respect of equal and inalienable rights must be in the centre of the discourse on determining the extent of support needed by the particular individual with a disability. Therefore, the concept of incapacity must be rejected from the outset, and the degree of assistance made proportional to the needs and abilities of the person and vary depending on the situation (for example, they might need support making important financial decisions, but can manage their daily tasks independently). Consequently, the support in exercising legal capacity must always be based on a personal knowledge of the person (but not such as to create a conflict of interests!), and involve trust-building activities through alternative and augmentative communication methods. People whose abilities to make complex decisions or to communicate their decisions to others are either temporarily or permanently impaired may need high levels of support in most or all areas of life. In such cases they must be provided with such support that ensures that their legal capacity is nevertheless enjoyed on an equal basis with others while helping them to evaluate the implications and consequences of some of their actions or inactions. At present, there is no sufficient evidence and practice to determine how supported decision-making can be ensured for this group of persons with disabilities. States Parties as well as disability organisations are called upon to test with urgency practical models of supported decision-making in pilot projects to resolve this outstanding question. The crucial point is how a trusting support relationship can be established in the cases of all people with disabilities.

2.4.

Safeguards

The Convention requires that appropriate and effective safeguards be put in place to prevent abuse of persons with disabilities in the exercise of their legal capacity. The text of the Convention itself provides important guidelines to be respected by the support measures. Namely, they must be appropriate and effective, proportional and tailored to the persons circumstances, apply for the shortest time possible as well as subject to regular review by a[n...] independent authority. The Convention obliges States Parties to develop disability-neutral criteria to protect persons with disabilities against abuse in the same way as all
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other citizens are protected. In practice that means the establishment of a system for impartial assessment of the actual need for supported decision-making in exercising legal capacity, performed with the assistance of recognised independent experts, rigorous determination of the extent of the supporters role and power, periodical reexamination of the measures adopted and possible appeal of decisions by disabled persons or their families. Again, it must be emphasised that the disabled persons wishes must always be the determining factor. Special attention must be paid to safeguarding the rights of people in need of high level of support in all areas of life, who may be particularly vulnerable to undue influence. These safeguards must be clearly separate from the support network, since they should also protect the person from exploitation or abuse by supporters.

3. Eight steps for achieving equal recognition before the law

EDF recommends that the States Parties to the CRPD follow these eight steps to achieve the objectives of Article 12 of the Convention, which is the full exercise of ones legal capacity benefiting, whenever appropriate, from the support in decision-making. 3.1. Promotion and support of self-determination of people with disabilities The paradigm shift in the Convention includes the notions such as respect for inherent dignity, individual autonomy, including the freedom to make ones own choices, and independence of persons. Exercise of these rights is dependent on the promotion, establishment and maintenance of formal and informal structures and networks of people with disabilities. Furthermore, support for social networks (family members, carers, professional staff etc) is needed to support, whenever needed, the full exercise of the rights enshrined in the CRPD. EDF therefore calls upon all States Parties: to create favourable conditions for the establishment of networks of persons with disabilities; to promote and support self-determination of all groups of persons with disabilities in all areas of life; to promote independent living of persons with disabilities; to introduce training programmes for social networks.

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3.2. Replacing traditional guardianship by a system of supported decision-making Based on the principle of full legal capacity in Article 12, States Parties are required to revise their national legal systems to develop a comprehensive system of supported decision-making and safeguards for all people with disabilities in need of such system, while paying special attention to the protection of the rights of peoples with disabilities requiring high-level support in all areas of life. EDF therefore calls upon all States Parties: to review all national laws in light of Article 12 to ensure the right to self-determination and equal recognition before the law by all persons without discrimination on the basis of disability; to abolish without delay all legislation and practices that lead to legal incapacitation once a person with a disability becomes of age; to develop and progressively introduce a system for supported decision-making according to the core elements described below; to secure that the elements for supported decision-making are clearly defined and are not undermined by criteria which pretend to be supportive but are, in fact, a disguised substitute decisionmaking; to consider the functional approach to support in the decisionmaking. The functional approach determines the need for support on the basis of the individual task to be performed or the specific decision to be taken, and only allows for the least restrictive intervention possible; to introduce such legal safeguards that would be proportional to the degree of the persons need for support in any particular situation and ensure the respect and protection of the rights, will and preferences of the person, while respecting the rights of third persons.

3.3.

Developing a system for supporting decision-making

A registered system of supported decision-making should only be applied when necessary support in everyday life does not necessarily require such measures. Volunteers, family members, friends or neighbours who act as support persons sometimes help the individual in a number of practical things in everyday life from shopping to renovating the flat etc. This kind of support does not need to be legally regulated unless there is evidence that the individual is unhappy with the arrangement or that abuse or exploitation may be taking place. States Parties should have systems for dealing with such complaints. Thus, a legally regulated system of supporters should focus on the main decisions of legal relevance that affect the life of a disabled adult: with whom
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and where they want to live, the choice of their work or day activities, medical decisions, financial issues, establishing possibilities for leisure activities, and the choice of appropriate support services where needed. The performance of the supporter should be regularly reviewed. EDF therefore calls upon all States Parties: to develop legislation that provides for supported decision-making for essential decisions of legal relevance, according to the needs and abilities of the person, while ensuring that adequate funding mechanisms are put in place to finance it; to encourage and promote the creation of informal support networks; to ensure that whenever a legal decision on supported decisionmaking is required, it is subject to regular review; to ensure that training for people with disabilities and their peers is available; to provide for a role for national independent human rights institutions (including an independent mechanism to be set up under Article 33.2 of the CRPD) to monitor the legal transition from the traditional guardianship laws to the supported decision-making system.

3.4.

Selection and registration of support persons

Any system of supported decision-making must meet the needs of the particular individual. Support persons should thus be selected by, or with the consent of, the individual concerned. The expression of consent may take at its most basic the form of a smile when a person enters the room or even in a changed rhythm of breathing. Further practice and research is necessary on how to handle those rare cases where even this basic communication cannot be established. It might be an advantage if support person knows the individual personally for a significant period of time. In cases where the person with a disability does not have any trust relationships, States Parties must ensure and control that this person has the possibility to build trust relationships with support persons. In no case should support persons be linked to a psychiatric facility, an organisation of service providers or a governmental authority in order to avoid conflict of interests. Whenever needed in a particular situation, there should be the possibility to assign several support persons to one individual. The role of the support person may vary from providing day-to-day assistance to support in legal representation to psychological support the exact tasks would totally depend on the wishes and the needs of the person with a disability. In case of a psychosocial disability, early guidelines should be given to the support person in advance in order to adequately deal with situations of severe crises where
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the person with a disability is not able to give consent or take a decision 5. EDF therefore calls upon all States Parties: to establish criteria and selection processes for suitable support persons; to set up a registration system for these support persons that allows them to be officially recognized as supporters of the disabled individual; to ensure an obligatory and regular training for all registered support persons on all aspects necessary for providing adequate support and on the rules governing supported decision-making; to regularly review the functioning of the system of supported decision-making to ensure that the support person acts impartially; to inform the population (especially some target groups e.g: bank staff, doctors, social workers, etc.) about the system of supported decision-making and identify what they should know.

3.5.

Overcoming communication barriers

Some persons with disabilities, especially those with severe and profound intellectual and/or developmental disabilities, may find it difficult to receive, process and send normal communication signal. Furthermore, some people are only able to communicate their well-being through the rhythm of their breathing or a changed muscle tonus. Others use the verbal language in a non-functional way, or need communication devices or specific techniques to relay their wishes. EDF therefore calls upon all States Parties: to recognize that all forms of communication are valid and the way how people communicate should not be a reason to question their decision-making ability. Communication means should be interpreted in light of Article 2 of the CRPD; to provide safeguards to protect the rights and interests of those people with disabilities whose supporter is unable, despite their best efforts, to establish communication or understand their wishes. Inability to establish communication must not be confused with an inability to communicate; to promote model projects and research into how supported decision-making can be implemented, when establishing communication is difficult or impossible; 5 For some people with psychosocial disabilities, the state of incapacity can be
temporary and this should be taken into account.
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to ensure that decisions that involve highly personal values or controversial measures that may violate a persons physical or mental integrity (such as sterilisation, specific drugs, psychosurgery, etc) can only take place with the informed and unequivocal consent of the person concerned; to ensure that all people providing support for decision-making receive a regular training in alternative and augmentative communication, the use of communication technologies and other communication techniques; to promote examples overcoming communication barriers.

3.6. Preventing and supported person

resolving

conflicts

between

supporter

and

There will be cases where persons with disabilities take decisions that supporters do not perceive to be in their best interest (such as giving money to other people or organisations, the purchase of goods that the individual cannot afford, or the cancellation of a work contract). While maintaining their right to take decisions and make mistakes, the supporters must do their best to protect the supported person from exploitation, abuse and personal harm. EDF therefore calls upon all States Parties: to oblige support persons to demonstrate that they have informed the supported individual by all possible appropriate means about the consequences of any important decision; to create a mechanism to prevent abuse, including possibilities to ask for nullification of contracts in case the person was intentionally exploited (see Article 16 CRPD), abused or even injured (Article 17 CRPD); to create administration (out-of-court) procedures that are easily accessible for the supported person in case of a conflict with the supporter; to address the question of the liability and insurance of the supporter.

3.7.

Implementing safeguards

Article 12 of the CRPD is rather specific on the safeguards that must govern supported decision-making. Crucially, it provides that the safeguards shall be proportional to the degree to which such measures affect the persons rights and interests. This means that safeguards must be higher when a person has higher support needs, or when a decision intervenes in a very essential way in the life of a person.

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EDF therefore calls upon all States Parties: to ensure without delay that the safeguards stipulated in Article 12 are properly implemented in the field of supported decision-making legislation; to ensure that the supported decision-making, reviewed in light of the CRPD, becomes available for every person with disability who needs this support.

3.8. Using mainstream mechanisms for the protection of the best interests of a person Supported decision-making systems are not the only measures in place to protect the interests of a person. Consumer protection and information, legal protection of tenants, rights of medical patients, transport users, employees, etc. are but some of the areas where many States Parties have already incorporated the disability angle. People with disabilities are more vulnerable to abuse and therefore mainstream mechanisms should be made more accessible and inclusive. It is preferable to use these mainstream mechanisms instead of special procedures developed for the protection of the disabled persons interests. EDF therefore calls upon all States Parties: to ensure that all existing structures and legal mechanisms for the protection of citizens rights in different areas of life are accessible to people with disabilities, accommodate their needs and take their interests into account; to disseminate information about the existence and work of such systems in accessible format to all people with disabilities and their peers.

Acknowledgements
This position paper has been prepared in consultation with all EDF membership. EDF would like to thank all those that have actively contributed to the drafting of this paper and, in particular, Ingrid Krner and Geert Freyhoff of Inclusion Europe and Evelyne Friedel and Donata Vivanti of Autism Europe.

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APPENDIX About EDF and other documentation

A.1 About EDF The European Disability Forum (EDF) is the European umbrella organisation representing the interests of 65 million disabled citizens in Europe. EDF membership includes national umbrella organisations of disabled people from all EU/EEA countries as well as European NGOs representing the different types of disabilities. The mission of the European Disability Forum is to ensure disabled people full access to fundamental and human rights through their active involvement in policy development and implementation in Europe. A.2 Contact person at the EDF Secretariat: Janina Arsenjeva, Policy and European Parliamentary Janina.arsenjeva@edf-feph.org, telephone +32 2 282 4602 officer,

More information about EDF is available on the EDF homepage at: www.edffeph.org Should you have any problems in accessing the documentation, please contact the EDF Secretariat. (T: +32-2-282.46.00)

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