Supported DecisionMaking and Personal Autonomy for Persons with Intellectual Disabilities: Article 12 of the UN Convention on the Rights of Persons with Disabilities Nandini Devi

Introduction Making decisions is an important component of everyday living, and issues surrounding autonomy and self-determination are crucial for persons with intellectual disabilities. Adults with intellectual disabilities are characterized by the limitations in their intellectual functioning and in their adaptive behavior, which compromises three skill types (conceptual skills, social skills, and practical skills), and this starts before the age of 18.1 Though persons with intellectual disabilities are characterized by having these limitations, they are thought to face significant decisionmaking challenges due to their disability. Moving away from this generalization, Article 12 (Equal recognition before the law) of the United Nations (UN) Convention on the Rights of Persons with Disabilities (herewith called “the Convention”) addresses this issue of decision-making for persons with disabilities, recognizing the right to legal capacity. What is legal capacity? The Convention does not provide a definition for legal capacity, but Gerald Quinn, a prominent scholar in the field of disability law and human rights, defines legal capacity in the following way: legal capacity…Provides the legal shell through which to advance personhood in the life-world. Primarily, it enables persons to sculpt their own legal universe — a web of mutual rights and obligations voluntarily entered into with others….Legal capacity opens up zones of personal freedom.2 Essentially, legal capacity means recognizing the right to make decisions for oneself, and Article 12 emphasizes the need to recognize this right, even for those who have higher challenges in decision-making.3 The legal response to these challenges in many jurisdictions has been and continues to permit a third party (e.g., an appointed individual through the court system sometimes known as legal guardian) to make decisions on behalf of the concerned person with the intellectual disability, known as substituted decisionmaking.4 In contrast, supported decision-making is a process by which a third party (e.g., a support person Nandini Devi, M.A., is a Ph.D. candidate at the Department of Health Sciences and Health Policy, at the University of Lucerne in Lucerne, Switzerland. She is also a team member of the Disability Policy Group at the Swiss Paraplegic Research in Nottwil, Switzerland. Ms. Devi is currently researching the interpretation and implementation of Article 12 (Equal recognition before the law) of the United Nations Convention on the Rights of Persons with Disabilities, focusing on two approaches: substituted decision-making and supported decision-making at a service provision level in the U.K.

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or a peer support group) assists or helps a person with the intellectual disability to make legally enforceable decisions by themselves, without substituting their decision for the person supported. The support person enables the individual to exercise his or her legal capacity to the greatest extent possible, by maintaining the wishes and preferences of the individual.5 Article 12.3

psychosocial disability provides a sufficient basis to presume that the individual is unable to participate fully and autonomously in society, known as the status approach.11 The Convention rejects this approach and seeks to shift governments towards supporting persons with disabilities to be autonomous and independent. One way would be supporting persons with intellectual

Though Article 12 is moving in the direction of supported decision-making, much controversy has arisen in the interpretation of Article 12 regarding whether it allows for substituted decision-making. After an in-depth analysis of Article 12, in another paper, I show that the best interpretation is that, it is committed to supported decision-making. The objective of this paper is to show the conceptual connection between supported decision-making and the preservation of personal autonomy for persons with intellectual disabilities. of the Convention recognizes this support system for persons with disabilities to exercise their legal capacity, and therefore, State Parties who have ratified the Convention are required to do what they can to support those individuals. Though Article 12 is moving in the direction of supported decision-making, much controversy has arisen in the interpretation of Article 12 regarding whether it allows for substituted decision-making.6 After an in-depth analysis of Article 12, in another paper, I show that the best interpretation is that it is committed to supported decision-making.7 The objective of this paper is to show the conceptual connection between supported decision-making and the preservation of personal autonomy for persons with intellectual disabilities. Article 12’s insistence on the recognition of legal capacity for persons with intellectual disabilities must be understood in the context of the historical treatment of people with disabilities and their presumed inability to make decisions about their lives.8 There is an assumption that adults of typical intelligence, psychosocial functioning, and sensory ability are able to engage in various aspects of life, such as deciding where to live, whom to marry, how to spend money, for whom to vote, accepting or refusing medical decisions — on an autonomous basis.9 But for persons with intellectual disabilities, the picture continues to be different; for example, a common assumption is that persons with intellectual disabilities lack the ability to make informed decisions that may have long-term repercussions on their lives,10 particularly in making medical decisions. State parties have a patronizing assumption that the mere status of having an intellectual or human rights and disability • winter 2013

disabilities in making decisions for themselves, thereby respecting their autonomy, acknowledging their right to hold beliefs and values, and to make choices and to take actions based on them.12 The first section of this paper will provide background on intellectual disability. The second section will describe legal capacity as it relates to Article 12 of the Convention. As the focus of this paper is on supported decision-making, the third section will discuss supported decision-making in terms of Michael Bach and Lana Kerzner’s three-part model of: (1) legally independent status, (2) supported decision-making status, and (3) facilitated decision-making status.13 The fourth section will explicate the concept of personal autonomy found in John Stuart Mill, which recently has been disputed by Sarah Conly and her argument for limited paternalism.14 In the fifth section, I will argue why supported decision-making is conceptually connected to personal autonomy by applying Mill’s concept of autonomy to the situation of persons with intellectual disabilities.

1. Background — Persons with Intellectual Disabilities The first section of this paper will provide some background information on intellectual disability from the work of a distinguished scholar in the field of intellectual disability, R. L. Schalock of the American Association of Intellectual and Developmental Disabilities (AAIDD) defines intellectual disability15 as being: characterized by significant limitations both in intellectual functioning and in adaptive behav793

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ior as expressed in conceptual, social and practical adaptive skills. This disability originates before the age of eighteen.16 Intellectual functioning refers to an individual’s cognitive ability of reasoning, planning, problem solving, thinking abstractly, comprehending complex ideas, learning quickly, and learning from experience. Adaptive behavior refers to three types of skills, namely: social skills (e.g., interpersonal skills, social responsibility, self-esteem), conceptual skills (e.g., language, reading, writing and counting), and practical skills (e.g., personal care such as eating and dressing).17 Individuals who are thought to have limitations in these areas may also have difficulty with communicating or interacting with others, managing money, attending to their personal care, and making medical decisions.18 To identify or measure the level of impairment in the behavior of the individual with the intellectual disability, an intelligence quotient (IQ) test is normally used.19 A person is considered intellectually disabled if he or she has an IQ score less than 70 to 75. According to the World Health Organization’s International Classification of Diseases (WHO ICD10),20 there are four different levels of impairment for persons with intellectual disabilities, categorized as mild, moderate, severe, and profound intellectual disability.21 Adults with “mild” intellectual disabilities have an approximate IQ range that is between 50 to 69.22 Adults in this range are able to work, maintain good social relationships and contribute to society (F70-ICD 10). They can even raise children with the support of their family, friends, and the service system. Adults with “moderate” intellectual disabilities have an approximate IQ range that is between 35 to 49.23 Adults in this range are able to learn and develop some independence in self-care and acquire adequate communication and academic skills (F71ICD 10). Adults in this range will need some degree of support to live and work in the community. They are able to make choices for what they want to do in their daily life, enjoy a range of social activities with their family and friends, and make simple decisions. Adults with “severe” intellectual disabilities have an approximate IQ range that is between 20 to 34,24 and it is likely that adults in this range will need continuous care support in their daily life (F72 ICD 10). The last category consists of adults with “profound” intellectual disability, the approximate IQ range is under 20,25 and adults in this range have severe limitations in self-care, continence, communication and mobility (F73-ICD 10). They usually have very little or no form of speech and tend to rely on their gestures, facial expression and use body language to commu794

nicate with others. (It should be noted that the use of IQ testing scores is now being questioned in the upcoming fifth edition of the Diagnostic and Statistical Manuel of Mental Disorders V by the American Psychiatric Association (2013), 26 and possibly by the ICD-1127 which is under revision.

2. Article 12 of the Convention — Legal Capacity Legal capacity is a rather an abstract concept, yet it is at the heart of an individual’s freedom. Gerald Quinn comments that “legal capacity to me is a continuum that connects everything needed to enable a person to flourish — a right to make decisions and have them respected, a place of one’s own, a life in the community connected to friends, acquaintances and social capital, whether in public or private settings….” 28 Legal capacity can be thought of as a person’s power to act within “the framework of the legal system.”29 It includes the ability to be a holder of rights and an actor of the law, and to exercise those rights. Furthermore, an individual’s legal capacity allows the person to take actions that the law must recognize, such as getting married, signing a contract and making medical decisions. These decisions when made should be respected if they fall within the legal system. However, if a person is denied legal capacity, then his decisionmaking power is taken away and given to a third party to make decisions on his behalf, e.g., the substitute decision-maker. From the outset, it is important to distinguish between mental capacity (decision-making ability) and legal capacity. In some jurisdictions mental capacity (decision-making ability) is an essential component for individual autonomy. For example, the Mental Capacity Act (2005)30 in the U.K. is designed to respect individual autonomy and self-determination,31 but not for persons who lack mental capacity. Here, I argue that we all have varying levels of decision-making abilities, and this is not something which should have any impact on the individual’s right to legal capacity. The UN Convention is the first international human rights treaty to recognize the right to legal capacity for persons with disabilities, including those with higher needs.32 Recognizing that differing abilities call for different amounts of outside aid in making decisions, Article 12 of the Convention calls for supported decision-making systems to replace substituted decision-making, such as guardianship. Supported decision-making is predicted on the basic principle that all individuals are autonomous agents who can develop and maintain their mental capacity as they engage in the process of their own decision-making journal of law, medicine & ethics

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even if some level of support is needed. The next section will primarily focus on a more detailed description of what is supported decision-making based on Michael Bach and Lana Kerzner’s model of supported decision-making.

3. Supported Decision-Making 3.1 What Is Supported Decision-Making? Supported decision-making is a process by which a third party assists or helps an individual with an intel-

Lana Kerzner, a barrister from Canada working on legal capacity, states that “supported decision-making is a mechanism for enhancing a person’s ability to make his own decision.”37 This type of decision-making is based on a continuum, whereby the support is a process led by the individual in collaboration with other persons who are committed to the individual’s well-being.38 A “model” that incorporates this reliance of support in the decision-making process “…recognizes that noninterference with liberty and autonomy

Since the Convention entered into force in 2006, the literature on the concept of supported decision-making is small but rapidly growing. Though there are different models of supported decision-making being developed, I shall use the supported decision-making model developed by Bach and Kerzner in 2010. I use their model because it is being proposed to a number of countries, and they argue that it complies with Article 12 of the Convention. lectual or cognitive disability to make legally enforceable decisions for oneself.33 Though supported decision-making is not defined in the Convention, the Handbook for Parliamentarians on the Convention34 describes support as: …Those assisting a person may communicate the individual’s intentions to others or help him/her understand the choices at hand. They may help others to realize that a person with significant disabilities is also a person with a history, interest and aims in life, and is someone capable of exercising his/her legal capacity.35 Supported decision-making is a system in which people work together to understand an individual’s desires and choices and then provide the means for that person to exercise their legal capacity and live life in the way he or she chooses as opposed to a way imposed by someone else’s decision made on their behalf. The Handbook for Parliamentarians further describes the role of the support person as, …The individual is the decision maker; the support person(s) explain(s) the issues, when necessary, and interpret(s) the signs and preferences of the individual. Even when an individual with a disability requires total support, the support person(s) should enable the individual to exercise his/her capacity to the greatest extent as possible, according to the wishes of the individual.36 human rights and disability • winter 2013

does not necessitate neglect.”39 Rather, such a “model” would seek to support persons with disabilities to make their own competent choices. Such supports could function in the following ways: (1) to assist an individual in a wide range of choices for making a decision on his own; (2) to engage in the decisionmaking process to enter into agreements with third parties that gives effect to one’s decision, where the individual’s decision is required; and (3) to act on the decisions that the individual has made to meet their obligations in a contractual agreement.40 A common form of supported decision-making is by means of a support network or support circle. A support circle involves people who are key members of the individual’s life (e.g., family members, friends, or those who have developed a close relationship with the individual). They provide support to the individual for making decisions and to interpret or facilitate when decisions need to be made. In this support circle, the people providing support normally understand the individual’s life history, their form of communication, and the things they desire. The support varies from gathering information and explaining it to the individual, assisting the individual to understand the consequences of a decision, and assisting in using assistive and communicative devices. The type of support that is required is based on the individual, depending on his or her level of functioning. Since the Convention entered into force in 2006, the literature on the concept of supported decisionmaking is small but rapidly growing. Though there are different models of supported decision-making being 795

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developed,41 I shall use the supported decision-making model developed by Bach and Kerzner in 2010. I use their model because it is being proposed to a number of countries, and they argue that it complies with Article 12 of the Convention. 3.2 Supported Decision-Making (Bach and Kerzner’s Model) Bach and Kerzner (2010) develop a conceptual framework based on a minimum threshold42 and a broader decision-making capability, proposing three different types of status. Each of the statuses implies a combination of different decision-making abilities, supports, and accommodations. The framework suggests that legal capacity can be exercised in different ways depending on two main factors: (1) “whether or not a person’s particular decision-making abilities means that they need another person to help communicate and represent their will or intention to others”; and (2) “whether or not a person meets the minimum threshold — where at least one other person can reasonably understand the person’s will and/or intention, and communicate that to others for the purposes of a decision-making process.”43 Based on this, Bach and Kerzner proposed the following: (1) a legally independent decision-making status, (2) a supported decisionmaking status, and (3) a facilitated decision-making status.44 The three different types of status assume that a person has the will and/or intentions to guide their decision-making. The difference between these statuses is how a person is able to express his or her will and intention, and the extent to which, on their own, they can understand and appreciate the nature and consequences of a decision or agreement. The first category is called the “Legally Independent Decision-Making” status. In this status, the individual is recognized in making decisions independently, for example, entering into a contract.45 This means that the individual understands the information presented, appreciates the consequences of the decision (even though it might be an unwise decision), and is able to communicate the decision made to a third party.46 During the decision-making process, the individual can call for support or assistance in this category. This type of support may require easy read language (making written information easier to understand by using simple words or pictures) for people with learning disabilities or other accommodation in order to be able to understand and appreciate. The second category is called the “Supported Decision-Making” status.47 In this status, the individual definitely needs support, assistance, or representation from others to express his will and/or intention in the decision-making process.48 Some of the duties of 796

the support person in this category includes: consulting the individual to determine his wishes, considering these wishes given the current situation that was expressed prior to a planned document, and translating the individual’s will and intention. There are four ways to appoint a support person in this category. The first way to appoint a support person occurs when an individual needs assistance in the decision-making process. An example of this kind of support service is the Representation Agreement Act of British Colombia.49 The second way to appoint a support person is through an administrative tribunal; an application can be submitted by the individual. In this situation, it would be a requirement that the support person has a trusting relationship with the individual. The third way to appoint a support person is when the individual does not know anyone, such as a family member or friend. The fourth way to appoint a support person is where the individual has been acting in a de facto manner to support a person in making decisions. The third category is called the “Facilitated Decision-Making” status, where the support person facilitates the decision-making process.50 This status is normally used as a last resort, where the individual does not have either family or friends or even a support group who could reasonably interpret the will and preferences of the individual. Individuals who fit this status are people with significant intellectual disabilities, with no family relations or friends who know the individual well enough to understand the ways of communicating their will and preferences.51 In the facilitated decision-making process, it takes time for the support person to build a personal relationship with the individual in order to maximize their legal capacity. The facilitators in this status will facilitate the decision-making process based on the knowledge they have of the person at the time. If there is no prior information provided of the individual, then the “best interest” principle will apply to that particular decision. 3.3 Example of Supported Decision-Making Models Countries that have ratified the Convention are obliged to take measures to support persons with intellectual disabilities to exercise their legal capacity, which should be personalized according to the person’s circumstances and preferences. Some of these decision-making supports include life planning supports, independent advocacy, communicational, representational (supported decision-making), relationship building, and administrative supports.52 One country in particular, Canada, has led in the implementation of Article 12 of the Convention. It has codified supported decision-making in their legislation journal of law, medicine & ethics

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(e.g., in their guardianship laws) several years before the Convention was created. These laws were specifically developed to respond to persons with intellectual disabilities. For example, Section 6(1) of the Vulnerable Persons Living with a Disability Act 1993 (from Manitoba) defines supported decision-making as, the process whereby a vulnerable person is enabled to make and communicate decisions with respect to personal or his or her property and in which advice, support or assistance is provided to the vulnerable person by members of his or her network.53 Another example of supported decision-making is the Supported Decision-Making and Adult Guardianship Act 1997 from Prince Edward Island, which provides “supported decision-making agreement” for persons above the age of 18. Similarly, the British Columbia’s Representation Agreement Act (RAA), provides a “representation agreement” with a trusted person or support service to assist an individual in making and communicating certain decisions, or in making a decision on their behalf. These decisions focus on personal, health and financial matters. It is important to note that the individual does not compromise his or her legal capacity by entering into a representation agreement. However, the Act does not allow decisions to be made on behalf of the person as a last resort.

4. Concept of Personal Autonomy Autonomy is a multifaceted concept. Some of the terms used to describe autonomy include self-rule, self-determination, freedom of will, dignity, integrity, individuality, independence and self-knowledge. The Stanford Encyclopedia of Philosophy states that “Individual autonomy is an idea that is generally understood to refer to the capacity to be one’s own person, to live one’s life according to reasons and motives that are taken as one’s own and not the product of manipulative or distorting external forces.”54 This means that an individual is guided by his or her own desires, choices, conditions, and characteristics that are not imposed by others, e.g., a legal guardian. This description is similar to the notion of personal autonomy. Tom Beauchamp and James Childress,55 well-known scholars in biomedical ethics, describe personal autonomy as, Personal autonomy is, at minimum self-rule that is free from both controlling interference by others and from limitations, such as inadequate understanding that prevent meaningful choice.

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The autonomous individual acts freely in accordance with a self-chosen plan.…56 Furthermore, they emphasize the importance of respecting an individual’s autonomous decision as a right, “respect for autonomy is not a mere ideal in health care, it is a professional obligation. Autonomous choice is a right, not a duty of patients.”57 Therefore, the value of making medical decisions should be respected regardless of whether a correct choice has been made by the individual. Autonomy is also a central value in disability ethics, especially for persons with intellectual impairments or mental health problems, for whom the denial of autonomy and the legal capacity to make decisions for oneself is a prevalent practice.58 4.2 John Stuart Mill — The Concept of Personal Autonomy I now turn to John Stuart Mill (1806–1873), “the most influential English-speaking philosopher of the nineteenth century,”59 one of the last systematic philosophers making a significant contribution to biomedical ethics, metaphysics, and moral and political philosophy. Due to his vast influence in biomedical ethics, I use Mill’s concept of personal autonomy based on his famous book On Liberty published in 1859.60 In his book, though Mill makes no textual reference to the actual word “autonomy,” he describes the concept of personal autonomy, citing it as liberty. In On Liberty, Mill observes that liberty can be divided into three principles of liberty, and each principle should be respected and recognized by any free society. Mill phrases the first principle of liberty as the “...liberty of thought and feeling; absolute freedom of opinion and sentiment on all subjects, practical or speculative, scientific, moral or theological....”61 The individual person should be allowed to form opinions and articulate his or her thoughts as he or she wishes because, as Mill states, the individual “… merely concerns himself, his independence is, of right, absolute. Over himself, over his own body and mind, the individual is sovereign.”62 Mill finds intrinsic value in permitting an individual to decide for himself even if, objectively, he makes an unhealthy choice. This principle can be seen to have an admirable effect as it assures the widest sphere of freedom. According to Mill, the second principle of liberty “… requires liberty of tastes and pursuits; of framing the plan of our life to suit our own character, of doing as we like, subject to such consequences as may follow without impediment from our fellow-creatures, so long as what we do does not harm them, even though they should think our conduct foolish, perverse, or 797

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wrong.”63 The second principle highlights that individuals have the freedom to plan their own lives, as their choices are their own, even in relation to the opinions of others. The third principle of liberty of the individual follows the liberty, “…within the same limits, of combination among individuals; freedom to unite, for any purpose not involving harm to others….”64 This simply means individuals have the liberty to join other likeminded individuals for a common purpose that does not harm anyone. The only time power can be exercised against a person’s will is “…to prevent harm to others….” 65 Mill refers to this principle as the “harm principle.” The harm principle holds that each individual has the right to act as he or she wishes, as long as these actions do not harm others. The state should regulate actions that directly cause unacceptable harm to others. If the harm is self-regarding, that is, if the harm only directly affects the person undertaking the action, then society has no right to intervene, even if it feels that the individual is harming him- or herself. However, at the same time, Mill argues that people should be prevented from serious harm to themselves or to their property by the harm principle because no one exists in isolation: harm done to oneself also harms others. Furthermore, Mill buttressed his case for liberty with another subordinate argument, the contention that “each is the best judge and guardian of his own interest.” Any form of interference against the individual’s liberty would be self-regarding, because such interference affects the conduct of the individual, and it cannot be justified by citing the need to protect the interests of others. 4.2.1 Individuality In Chapter III in On Liberty, “Of Individuality, as One of the Elements of Well-Being,” Mill further expands the importance of individual freedom, for individuals to form their own opinion and to act freely on their opinions without the hindrance of external influence or coercion, unless there is harm to others.66 Mill states: that human beings should be free to form opinions, and to express their opinions without reserve; and such the baneful consequences to the intellectual, and through that to the moral nature of man, unless this liberty is either conceded, or asserted in spite of prohibition….67 Individuality allows for the development of the individual as Mill believes, “…that the free development of individuality is one of the leading essentials of 798

well-being….”68 Mill asserts that the development of the individual can be exercised in different ways and establishes a potential list of exercises — “observation to see,” “reasoning and judgment to foresee,” “activity to gather materials for decision” — and it is through these different exercises that an individual is able to gain and choose his own “plan of life.”69 The more an individual develops, the more valuable he or she becomes to him- or herself and more so to others. Also in reference to individuality, Mill argues that there is no one best way to live: the choices we make determine what is best for ourselves because the choices are our own. 70 I interpret this part of Chapter III in On Liberty to be part of Mill’s concept of personal autonomy, because it is based on an ideal for self-creation, self-integration, and self-determination and is determined either individually or collectively to form part of society. I have considered Mill’s ideal of personal autonomy as elaborated above, but there is an interesting contradiction ahead. Though Mill expands on the concept of autonomy and individual freedom, it seems that it might not be applicable to everyone as Mill states in On Liberty: …this doctrine is meant to apply only to human being in the maturity of their faculties. We are not speaking of children, or of young persons below the age which the law may fix…we may leave out of consideration those backward states of society, in which the race itself may be considered as in its nonage.71 Using Mill’s concept of personal autonomy, I think Mill might have disqualified those who were children or young persons and those considered to lack judgment, such as a person with an intellectual disability who is judged to lack capacity. Mill perhaps made this distinction due to the fact that the idea of liberty is essential to ensure subsequent progress, both of the individual and of society. Therefore, choosing Mill’s concept of autonomy for persons with disabilities, depending on the level of cognitive impairment, poses some challenges to this qualification. Mill could have meant that children are used as a reliable indicator as a cut-off point when it comes to respecting an individual’s autonomy due to their age (below 16 or 18 years old), not because they are incapable of making a decision. This could also be applicable to persons with intellectual disabilities when he uses the word “nonage.” This might not imply that persons with intellectual disabilities have an inability to make decisions but rather that their ability to make decisions needs to be guided. journal of law, medicine & ethics

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Mill also opposes paternalism72 because the freedom of choice is intrinsically great, and paternalistic interferences with one’s liberty often thwart that freedom of choice,73 unless there is harm to others. If a person’s happiness depends on exercising their capacities to make them responsible agents, then the principle ingredient in doing so includes opportunities for making responsible choices and reflective decisionmaking. It becomes clear how personal autonomy is an important part of an individual’s good life and how paternalism undercuts the person’s good in predictable ways. However, if I use Mill’s famous example of the individual about to walk across the damaged bridge without being warned of the danger, then using some version of soft paternalism would fully justify preventing him from crossing the bridge. If the individual still wants to cross the bridge knowing the danger, then he must be allowed to do so, according to Mill. Though I am in favor of Mill’s liberalist concept of personal autonomy or individuality, it is also important to view some arguments against his concept on autonomy from a contemporary perspective. Sarah Conly in her 2013 book, Against Autonomy Justifying Coercive Paternalism,74 criticizes Mill’s concept of liberty and questions the value of autonomy, thus supporting coercive paternalism. Conly argues that autonomy itself is not valuable enough to offset what we lose by letting people make their own choices,75 even though individuals value their liberty. This is the opposite of Mill’s belief, as he emphasizes that individuals are the best judges of their own character and should have the freedom to choose. Furthermore, she argues that governments should provide assistance to individuals for their benefit, and that preserving their liberty of action is not worth the costs of exercising choice.76 Therefore, the ground for respecting personal autonomy is not stable and multifaceted. Conly also argues for coercive intervention, and in particular arguing that there are two types of cases where such interference is permissible. The first case refers to the individuals who are ignorant or unaware of the facts in carrying out an act.77 For example, an individual prevented from purchasing medications from the internet until he or she gets treated by a doctor as the medication needs to be prescribed by the doctor. In this case expert knowledge is necessary and available, and the individual is better off accepting the medication prescribed by the doctor than purchasing it from the Internet. The individual may be unaware of the adverse effects of the medication and may not have the proper information about administering the medication, the correct dosage and method. Conly argues that this is similar to Mill’s example of stopping someone from crossing the broken bridge. human rights and disability • winter 2013

The second case is where a person is incompetent to make a rational choice, and coercive paternalism should be allowed due to their incompetency.78 For example, people with a severe mental impairment may make poor decisions about their life, if they acted on their own. In such a case, it would be necessary to provide some help even if it was unwanted. Taking into consideration these two cases, Conly argues for legislative measures to force individuals to do what is for their greater good, e.g., having paternalistic laws. Generally, Mill would have refuted Conly’s argument because it constrains an individual from freely acting out his or her incentives. However, I wonder whether Mill would have allowed for some form of coercion for persons with severe intellectual disabilities. This will be discussed in the next section of the paper.

5. Supported Decision-Making and Personal Autonomy for Persons with Intellectual Disabilities Persons with intellectual disabilities should be provided with decision-making opportunities in their everyday life. Society must recognize that people with intellectual disabilities have their own desires, wills, and needs and are capable of making choices accordingly. Not every person is normal as defined by society, and not every person is able to express their choices in ways that are conventionally accepted and communicated. For example, some people with intellectual disabilities communicate through words, some using signs, some through writing, and others through simple smiles and gestures and body language. Whatever method that the individual is able to communicate, unconventionally or not, their desires should not be ignored even if they communicate differently from most people. This is where the supported decision-making system is beneficial — people working together to understand a person’s desires and choices and then provide the means for that person to exercise his or her legal capacity to live a chosen life. Personal autonomy for persons with intellectual disabilities should not be violated; they should be free to make their own choices even if they are unhealthy choices. Their personal autonomy should be directed by their desires, conditions, and characteristics, which should not be imposed upon by someone else’s decision made on his or her behalf. This is reflected in Article 3(a) General Principles of the Convention. It states, “The principles of the Convention shall be, … individual autonomy including the freedom to make one’s own choices, and independence of persons;…”. According to Sigrid Graumann, there are two aspects of autonomy which should be respected, protected and insured: “autonomy as independence from per799

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sons and autonomy as authority to make one’s own choices.”79 States should be implementing measures to empower persons with disabilities by providing opportunities for persons with intellectual disabilities to exercise their legal capacity. It is rather clear that employing a supported decision-making model is preferred and would comply with Article 12.3 of the Convention. The supported decision-making structure developed and proposed by Bach and Kerzner is also believed to comply with the requirements of Article 12 of the Convention.80 Their model is intended to move away from assessing the mental capacity (decision-making ability) of a person, such as the capacity assessments set in the Mental Capacity Act. I shall show the conceptual connection between supported decision-making (developed by Bach and Kerzner) and the preservation of personal autonomy (using Mill’s concept of personal autonomy) for persons with intellectual disabilities. These arguments will be divided into three parts by looking at each of the supported decision-making statuses. 5.1 Legally Independent Status In the legally independent status, the individual is able to act independently on his or her own to make an autonomous decision. The individual is able to understand the information, appreciates the consequences of the decision made, and is able to communicate this decision to a third party independently. In this status, the individual may require some kind of reasonable accommodation81 to be assisted in the decision-making process, e.g., information provided in an easy read (easy to understand by using simple words and pictures) language for a person with a mild intellectual disability. Taking the example of medical decisionmaking, a patient either accepts or refuses a particular medical treatment in consultation with the physician. The physician discusses the information of the treatment, the options for the treatment, and the risks and benefits of having the treatment. Such information should be provided to the patient (i.e., person with the mild to moderate intellectual disability) in simple, clear language — providing enough time to arrive at a decision with informal support (support by family or friends), where the patient can discuss it with their close relatives or friends in arriving at a decision. The patient can either accept or refuse the treatment: it is important to note that the individual is the decider in this status. No other person is required to represent an individual in the decision-making process. This is just one example of making an autonomous decision. This type of autonomous decision-making supports Mill’s concept of personal autonomy. Mill is a strong believer

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of individuality, as he states that the one who makes his own choice is to be best judge of his own life. Persons with mild to moderate intellectual disabilities have the ability to reason the pros and cons of the information provided and then to decide either to accept or reject the medical treatment without any coercion by the physician or by an informal support group (e.g., for example by a church group). Studies have shown that patients with mild to moderate intellectual disabilities have the capacity to make simple health care decisions; despite this, many of the patients were not involved in the decisions about their care and appeared to lack knowledge regarding the medication they were taking.82 Also, those with mild to moderate intellectual disabilities are able to make such medical decisions if the information is in an easy format language.83 However, to those persons with higher needs, i.e., severe to profound intellectual disabilities, the challenge is higher in terms of informing and communicating the information. Of course, they too can make individual decisions if the right support mechanisms are in place, for example, taking the time and providing appropriate communication devices for the person to communicate his or her wishes. Therefore, it can be argued that the legally independent decision-making status reflects Mill’s concept of personal autonomy, as the individual acts autonomously, making independent decisions on his or her own and, when necessary, with reasonable accommodation. 5.2 Supported Decision-Making Status In the supported decision-making status, the individual does not act in isolation and is provided with support in the decision-making process. The individual with the intellectual disability can appoint a support person or a support group based on a relationship of trust and care. The person appointed is not necessarily a family member; it can be anyone whom the person trusts. The role of the support person is to interpret and carry out the will or intention of the person with the intellectual disability that is “consistent with the person’s identity” and respects “the individual’s dignity of risk.”84 An example of this type of support is called a peer support group. The support person or group should respect and empower the person’s autonomy who they are supporting, even if they feel it is a wrong decision, such as refusing a particular medical treatment. Mill would point out that the person should be completely free to choose and express his views and opinions because he ultimately knows what is best for his own well-being. On the other hand, Conly would argue that if a person refuses the medical treatment and his medical condition deteriorates as a result, then it would be beneficial to be paternalistic and journal of law, medicine & ethics

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enforce the medical treatment against the wishes of the person. For a person with a mild or moderate intellectual disability who needs to make a medical decision, what kind of support would they require? The support person can help in the following ways, for example: (1) provide the patient with information of the medical treatment; (2) remind the patient of the information that the patient needs to make the decision; (3) make the patient understand the different choices of his or her treatment options and the risks and burdens; and (4) communicate the patient’s decision to the physician.85 Ultimately, the person with the intellectual

another study by Maureen Schepis taught three adults with profound and multiple learning disabilities to express their choices about leisure activities by using a voice output communication aid.87 In On Liberty, Mill explains the development of an individual can be exercised in different ways — through observing actions or gathering materials for an activity in order to plan his or her life. This notion applies to people with severe to profound intellectual disabilities: opportunities should be provided for them to develop themselves through various participating activities, which will lead them to explore their likes and dislikes through unconventional methods of communication.

The supported decision-making status shows that there is a connection with Mill’s description of personal autonomy if the appropriate supports are provided for the individual to exercise his or her legal capacity. Even in this status, the individual is still at center stage of the decision-making process, even if the support person or group has to communicate the individual’s will and intention to others. However, the question arises again in circumstance where persons with more complex needs have to make decisions but do not have a close friend or family support. This is where Bach and Kerzner propose their third status: the facilitated decision-making status. disability will be the decision-maker in the supported decision-making status even if the decisions are communicated to others by his supporter or representative. However, this supported decision-making status becomes slightly more complex when considering and translating the will and intention of the person who has severe to profound intellectual disability. For example, people with severe communication impairments, or with no speech at all, can find it hard to participate actively and independently in their daily lives and may have difficulties in making their wishes and interests known to others. One way to overcome this is for people with limited communication skills to be observed in a friendly manner over a period of time to understand their gestures and actively involve them in the participation of their decisions. Their unconventional method of communication should not pose as a barrier to express their choice. Studies demonstrate that, given the right conditions, many people with profound learning disabilities can learn to make choices. For example, Philip Schweigert and Charity Rowland taught several children with profound and multiple learning disabilities to make choices using a combination of switches and social interaction.86 Similarly

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The supported decision-making status shows that there is a connection with Mill’s description of personal autonomy if the appropriate supports are provided for the individual to exercise his or her legal capacity. Even in this status, the individual is still at center stage of the decision-making process, even if the support person or group has to communicate the individual’s will and intention to others. However, the question arises again in circumstance where persons with more complex needs have to make decisions but do not have a close friend or family support. This is where Bach and Kerzner propose their third status: the facilitated decision-making status. 5.3 Facilitated Decision-Making Status The facilitated decision-making status is often used for persons with significant disabilities, where they do not have a family member or close friends to understand their will and preferences regarding decisionmaking.88 An example would be of an individual who has experienced a traumatic injury, illness, or has got serious impaired cognitive and communication function; this status will be recommended. This status is normally applied as a last resort when the person 801

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with the intellectual disability is unable to act in the legally independent decision-making status and in the supported decision-making status. In such a case, a facilitator or a representative is appointed through a court system who makes decisions on behalf of the individual but does so by considering the will and preferences of the individual. This is done by assessing the best arguments for the person’s autonomy and decision-making capability and visualizing what the person’s will and preference could be. I argue that the facilitated decision-making status is similar to substituted decision-making because decisions are made on behalf of adults lacking the standard decision-making ability, even though it seeks to promote individuality and freedom. If facilitators do not have any prior knowledge of an individual or if the information is rather limited in respect to a particular decision to be made, then the principle of “best interests” can be applied.89 This is more or less the same as using substitute decisionmaking which is also based on the principle of “best interest” of the individual as well. For example, under the Mental Capacity Act (MCA), the “best interests” principle is relevant to all substitute decisions involving “acts in connection with care and treatment.”90The “best interests” determination extends to an adult who is judged unable to make an autonomous decision because of an “impairment or, or disturbance in the functioning of, the mind or brain.”91 In determining a person’s “best interest,” a checklist92 is made available to describe the factors when a substitute decision-maker wants to make a medical decision on behalf of the person. One of the factors that the substitute decision-maker needs to take into account is the person’s wishes, feelings, beliefs, and values. The only difference is that the MCA does not include an explicit requirement to uphold a person’s human rights when undertaking a “best interests” determination.93 So when it comes to persons with intellectual disabilities, it is argued that the nature of their disability means that they will be unable to make one or more autonomous decisions at certain points in their lives, regardless of the support that they get, 94 even though it gives rise to dilemmas of autonomy and self-determination. In the U.K., Michael Dunn (who worked as a support worker providing support and engaging in substituted decision-making) carried out a study involving persons with severe to profound intellectual disabilities in residential homes where he used his personal experience to operationalize substituted decision-making in their everyday life95 in terms of what he called “strategic substitute decision-making” and “relational substitute decision-making.”96 I shall 802

focus on the former decisions in the case of health care interventions for persons with severe to profound intellectual disabilities — interventions including influenza vaccinations, medication management, exercise routines, and therapeutic interventions.97 Dunn provides an example of winter influenza vaccinations that had to be given to the residents. The decision to give the injection for those judged to lack capacity decision-making was determined in medical terms and was centered on balancing objectively the resident’s health and well-being with the discomfort associated with the injection.98 This, of course, was carried out in consultation with the resident who was informed of when the intervention would happen, and if the resident was not ready for it, then the injection was rescheduled. Here, I would argue that similar principles were used as described in the facilitated decision-making status, using the principle of best interest, even if the residents might have not wanted the vaccination. Considering the high level of needs for persons with severe to profound intellectual disabilities, the facilitated decision-making status might not promote personal autonomy for these individuals, using Conly’s arguments. Facilitated decision-making status can be seen as a form of coercive paternalism. Conly states that using coercive paternalism where a person is incompetent to make a rational decision is justified due to his or her incompetency since it is rather challenging to understand the wishes and intentions of persons with severe to profound intellectual disabilities, especially in medical decision-making. In such a case, it would be beneficial to act in the best interest of the person to provide the medical treatment for the individual because they might be unaware of or unable to process such complex information. Mill perhaps would disagree with Conly, and argue that the individual should have the freedom to make his or her choice without the interference or hindrance of another. The only time such an interference could be made is when the person is unaware of a situation that could harm him- or herself. Therefore, I question whether in specific medical cases this form of paternalism is justified, for example, a blood transfusion for a person who is a Jehovah’s witness in an emergency situation where the patient is unconscious. Using this example, in the facilitated decision-making status, it is likely that the physician would go ahead with the blood transfusion because the physician would be acting in the best interest of the patient unaware of their choices. These are some ethical dilemmas physicians and patients face between the autonomy of a person and the quality of care provided. Using the above example of the winter vaccinations provided for the journal of law, medicine & ethics

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residents at the care home, what if one of the residents refused to take it? It could be argued that injections were a medical necessity for the residents’ health, even if that decision took away their autonomy.

Conclusion States must recognize that people with intellectual disabilities have their own desires, wills, and needs and are capable of making choices accordingly. Article 12 (Equal recognition before the law) of the United Nations Convention on the Rights of Persons with Disabilities recognizes the right to exercise legal capacity on an equal basis as non-disabled people. This includes persons with mild, moderate, severe, and profound intellectual disabilities. Article 12.3 of the Convention requires State Parties to provide necessary support for persons with disabilities who may need assistance to exercise their legal capacity. The word support caused a lot of controversy during the deliberation process in the creation of the Convention, but the best interpretation of the language of Article 12 is that it is committed to supported decision-making. Supported decision-making is beneficial when people are working together to understand a person’s desires and choices and will provide ways for the individual to exercise his or her legal capacity. Moving in the direction of supported decision-making, this paper used Bach and Kerzner’s supported decision-making structure because it is believed to comply with Article 12 of the Convention on Disabilities. They have developed a model of supported decision-making which incorporates three different statuses: (1) legally independent decision-making status, (2) supported decision-making status, and (3) facilitated decision-making status. This paper discussed the conceptual connection between the three supported decision-making statuses and personal autonomy, in Mill’s sense for persons with intellectual disabilities. Arguments against Mill’s concept of personal autonomy were also considered, using Sarah Conly’s arguments in favor for paternalism in the facilitated decision-making status. Personal autonomy as described by Mill fits in well with the overall framework of the Convention on a philosophical level. I certainly argue that the legally independent decision-making status and the supported decision-making status show a conceptual connection with Mill’s concept of personal autonomy for persons with intellectual disabilities. However, I am rather critical of the suggestion that the facilitated decision-making status implies that persons with severe to profound intellectual disabilities are able to make autonomous decisions. This is not because persons with severe to profound intellectual disabilities human rights and disability • winter 2013

are unable to make choices. In fact, as studies have shown, if the appropriate opportunities and conditions are provided over a period of time with expert support and communication devices, then persons with severe to profound intellectual disabilities are able to make choices. It is rather that the facilitated decision-making status, as a last resort, uses the best interest approach. If there is no information or the information is very limited with respect to making particular decisions for persons with high needs, the principle of “best interests” could apply. If the best interest approach is used, then it can be argued that it becomes substituted decision-making. If we argue on this ground, then the spirit of the Convention could be questioned regarding autonomous decision-making for persons with all disabilities. Mill’s concept of personal autonomy can also be questioned in reference to the facilitated decision-making status, because Mill opposes any form of interference with one’s liberty which tends to thwart the freedom of choice, unless there is harm to others. This said, one of the ways to encourage persons with severe to profound intellectual disabilities to be more autonomous in the decision-making process, is for them to participate in the decision-making process collectively with others. Another way would be to observe their behavior and interactions closely, in order to understand their way of communicating with the world. Acknowledgement

I would like to acknowledge and thank Ms. Nicole Emmenegeer (MA) from the Swiss Paraplegic Research (based in Nottwil, Switzerland) for supporting and discussing some of the issues raised in this paper.

References

1. R. L. Schalock, S. A. Borthwick-Duffy, V. J. Bradley, W. H. E. Buntix, D. I. Coulter, E. M. Craig, “Intellectual Disability: Definition, Classification, and System of Support,” American Association on Intellectual and Developmental Disabilities, 2010, available at (last visited September 20, 2013). 2. G. Quinn, “Personhood & Legal Capacity, Perspectives on the Paradigm Shift of Article 12 CRPD,” presentation at the HPOD Conference, Harvard Law School, Boston, February 20, 2010, available at (last visited September 20, 2013). 3. Article 12 of the UN Convention on the Rights of Persons with Disabilities recognizes the right to legal capacity on an equal basis to others. 4. L. Salzman, “Rethinking Guardianship (Again) Substituted Decision-Making as a Violation for the Integrations Mandate of Title II of the Americans with the Disability Act,” Cardozo Legal Studies Research Paper No.282, University of Colorado Law Review 81, no.157 (2009): 157-205. For further details of substituted decision-making when it comes to financial arrangements see, W. M. I. Suto, C. H. Clare, and A. J. Holland, “Substitute Financial Decision-Making in England and Wales: A Study of the Court of Protection,” Journal of Social Welfare and Family Law 24, no. 1 (2002): 37-54.

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S Y MPO SIUM 5. United Nations, From Exclusion to Equality, Realizing the Rights of Persons with Disabilities’ Disabilities, Handbook for Parliamentarians on the Convention on the Rights of Persons with Disabilities and Its Optional Protocol (Geneva: United Nations, 2007): at 90. 6. A. Dhanda, “Legal Capacity in the Disability Rights Convention: Stranglehold of the Past or Lodestar for the Future?” Syracuse Journal of International Law and Commerce 34, no. 2 (2007): 429-462, at 431. 7. N. Devi, J. B. Bickenbach, and G. Stucki, “Moving towards Substituted or Supported Decision-Making?: Article 12 of the Convention on the Rights of Persons with Disabilities,” European Journal of Disability Research 5, no. 4 (2011): 249-264. 8. R. D. Dinerstein, “Implementing Legal Capacity under Article 12 of the UN Convention on the Rights of Persons with Disabilities: The Difficult Road from Guardianship to Supported Decision-Making,” Human Rights Brief 19, no. 2 (2012): at 2. 9.  Id., at 2. 10. J. C. Jenkinson, “Factors Affecting Decision-Making by Young Adults with Intellectual Disabilities,” American Journal on Mental Retardation 104, no. 4 (1999): 320-329, at 321. 11. The status approach is when a disability automatically disqualifies an individual from making decisions, and having those decisions respected. 12.  Id., at 125. 13. M. Bach and L. Kerzner, “A New Paradigm for Protecting Autonomy and the Right to Legal Capacity,” The Ontario Law Commission, Canada, 2010. This article is available on the Ontario Law Commission website, available at (last visited October 19, 2013). 14. S. Conly, Against Autonomy Justifying Coercive Paternalism (New York: Cambridge University Press, 2013). 15. An intellectual disability is caused by the presence of chromosome abnormalities, single gene disorders, environmental factors, such as perinatal trauma or intra-uterine infections, maternal and early childhood nutritional deficits, and/or as severe childhood neglect and deprivation. For more information see, the World Health Organization on Mental Health and Intellectual Disabilities, Addressing the Mental Health Needs of People with Intellectual Disabilities (2001), Report by the Mental Health Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities to the World Health Organization, at 5, available at (last visited September 20, 2013). 16. R. L. Schalock, “The Evolving Understanding of the Construct of Intellectual Disability,” Journal of Intellectual and Developmental Disability 36, no. 4 (2010): 223-233. 17. American Association on Intellectual and Developmental Disabilities, “Welcome to AAIDD,” 2007, available at (last visited September 20, 2013). 18. M. Bach, “Legal Capacity Personhood and Supported Decision-Making,” Canadian Association of Community Living, PowerPoint presentation (2006). 19. American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, DSM-IV-TR, 4th ed. Text rev., Washington, D.C., 2000. 20. See the World Health Organization, The International Classification of Diseases (ICD), (last visited September 20, 2013). It is the standard diagnostic tool from the World Health Organization (WHO) used for health management and clinical purposes. It includes the analysis of the general health situation of population groups including persons with intellectual disabilities. 21. World Health Organization, International Classification of Diseases (ICD – 10) (2010). This website provides information on the different levels of the severity of intellectual disability, available at (last visited September 20, 2013).

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22. The International Classification of Diseases (ICD) and Related Health Problems 10th Revision (ICD -10) Version for 2010, Chapter V – Mental and Behavioral Disorders (F00 – F99), F70 (WHO), available at (last visited September 20, 2013). 23. ICD – 10 Version for 2010, Chapter V – Mental and Behavioral Disorders, F71, available at (last visited September 20, 2013). 24. ICD – 10 Version for 2010, Chapter V – Mental and Behavioral Disorders, F72, available at (last visited September 20, 2013). 25. ICD – 10 Version for 2010, Chapter V – Mental and Behavioral Disorders, F73, available at (last visited September 20, 2013). 26. See a brief fact sheet regarding the fifth edition of the forthcoming edition of the Diagnostic and Statistical Manuel of Mental Disorders by the American Psychiatric Association, available at (last visited September 20, 2013). 27. See the International Classification of Diseases under revision and which will be updated to ICD-11, available at (last visited September 23, 2013). 28. G. Quinn, “An Ideas Paper: ‘Rethinking Personhood: New Directions in Legal Capacity Law and Policy’ or ‘How to Put the ‘Shift’ Back into Paradigm Shift,” University of British Colombia, Vancouver Canada, paper presentation, September 2011, at 4, available at (last visited September 23, 2013). 29. Commissioner for Human Rights, “Who Gets to Decide? Right to Legal Capacity for Persons with Intellectual Disabilities and Psychosocial Disabilities,” Council of Europe, Strasberg, April 2012, at 4, available at (last visited September 23, 2013). 30. The Mental Capacity Law (2005) is the current law in decision-making for those who lack the capacity to make decisions in the U.K. It can be found at: (last visited June 10, 2013). 31. G Richardson, “Mental Disabilities and the Law: From Substituted to Supported Decision-Making?” Current Legal Problems 65, no. 1 (2012): 333 - 354, at 340. 32. See, the Department of Economy and Social Affairs, The Office of the UN High Commissioner for Human Rights, and the Inter-Parliamentary Union, From Exclusion to Equality: Realizing the Rights of Persons with Disabilities, the United Nations Handbook for Parliamentarian No. 14 (2007). 33. N. A. Kohn and J. A. Blumenthal, “A Critical Assessment of Supported Decision-Making for Persons Aging with Intellectual Disabilities,” Disability and Health Journal, Review Article (2013). 34. The UN Committee on the Rights of Persons with Disabilities, which is mandated to interpret the CRPD, describes supported decision-making in their Handbook for Parliamentarians on the CRPD (2007) at 89. 35. Id., at 89. 36. Id., at 90. 37. L. Kerzner, “Paving the Way to Full Realization of the CRPD’s Rights to Legal Capacity and Supported Decision-Making: A Canadian Perspective.” This paper was written for the legal capacity symposium on From the Margins: New Foundations for Personhood and Legal Capacity in the 21st Century being held at the University of British Colombia, Ontario, Canada: April 2011): at 13. 38. Id., at 14.

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Nandini Devi 39. K. C. Glass, “Refining Definitions and Devising Instruments: Two Decades of Assessing Mental Competence,” International Journal of Law and Psychiatry 20, no. 1 (1977): 5-33, at 30. 40. See Bach and Kerzner (2010) supra note 13, at 73. See M. Bach (2007) Advancing Self-Determination of Persons with Intellectual Disabilities: Overview of the Supported DecisionMaking Model and Legal Provisions in Canada, Inclusion Europe, Include 1/2007, at 3, available at (last visited June 20, 2013). 41. There is not just one type of supported decision-making model in development. There are other types of models being proposed – for example, the 2012 Stepped Model from the South Australian project. The Stepped model incorporates both supported and substituted decision-making, this model describes different interventions based on the level of autonomy retained by the individual, and the level of intervention by the State. They have different types of supported decision-making agreements which may suit different persons. For more information on this, see J. Brayley, Developing a Model of Practice for Supported Decision-Making, Office of the Public Advocate, South Australia, 2011, at 11, available at (last visited October 20, 2013). 42. See Bach and Kerzner, supra note 13, at 65. They state that the minimum threshold of human agency, as they might characterize it, is: “to act in a way that at least one other person who has personal knowledge of an individual can reasonable ascribe to one’s actions, personal will and/or intentions, memory, coherence through time, and communicative abilities to that effect.” They further state that the actions can be ascribed intentions and will can be from the past. 43. See Bach and Kerzner (2010), supra note 13, at 83. 44. Id., at 83. 45. Id., at 83. 46. Id., at 83. 47.  Id., at 84. 48. Id., at 84. 49. See the website for the Representation Agreement Act of British Columbia (1996), available at (last visited September 23, 2013). 50. See Bach and Kerzner (2010), supra note 13, at 85. 51.  Id., at 85. 52. For more information on the different supports in place, see Bach and Kerzner (2010), supra note 13, at 75. In life planning supports, individuals require assistance in person-centered planning – a process of identifying values and purpose, making key decisions in relation to their interests and making and executing the necessary agreements. Independent advocacy centers can assist the individual in expressing their wishes and informing other parties of their rights and for other parties to respect those rights. The role of the advocate could be to facilitate the implementation of the decisions made by the individual. See the rest of the article by Bach and Kerzner for the different types of supports in place at 77-81. 53. The Vulnerable Persons Living with a Disability Act (Manitoba C.C.S.M C. V90). s 6(1). 54. See Stanford Encyclopedia of Philosophy, s.v. “Autonomy in Moral and Political Philosophy,” available at (last visited September 23, 2013). 55. See T. L. Beauchamp and J. F. Childress, Principles of Biomedical Ethics, 5th ed. (New York: Oxford University Press, 2001). 56. Id., at 58. 57.  Id., at 63. 58. See Dhanda supra note 6, at 434. 59. See Stanford Encyclopedia of Philosophy, s.v. “John Stuart Mill,” available at (last visited September 23, 2013).

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60. J. S. Mill, On Liberty (London: Longman, Roberts & Green, 1869); see it also online via Bartleby, available at (last visited September 23, 2013). 61. S. Collini. eds. J.S. Mill On Liberty and other writings, Cambridge texts in the History of Political Thought (Cambridge University Press, 2012) at 13. 62. Id., at 13. 63. Id., at 13. 64. Id., at 13. 65. Id., at 13. 66. Id., at 10. 67.  I d., at Chapter III, available at (last visited September 23, 2013). 68. Id., supra note 61, at 13. 69. R. F. Ladenson, “Mill’s Conception of Individuality,” Social Theory and Practice 4, no. 2 (1977): 167-182, at 174. 70. See supra note 61. 71.  Id., at 61. 72. See, the article entitled, “Legal Paternalism,” which concludes that “the state has the right to prevent self-regarding harmful conduct only when it is substantially non-voluntary or when temporary intervention is necessary to establish whether it is voluntary or not.” For more information on this see, J. Feinberg, “Legal Paternalism,” Canadian Journal of Philosophy 1, no. 1 (1971): 105-124, at 113. 73. J. A. Richard, “Mill Versus Paternalism,” Ethics 90, no. 4 (1980): 470-489, at 473. 74. S. Conly, Against Autonomy Justifying Coercive Paternalism (New York: Cambridge University Press, 2013). 75.  Id., at 16. 76. Id., at 16. 77.  Id., at 19. 78. Id., at 19. 79. S ee, S. Graumann in Chapter 5, “Resolving the Tension between Equality and Difference Notion of Discrimination,” in J. Anderson and J. Philips, eds., Disability and the Universal Declaration Human Rights: Legal, Ethical and Conceptual Implications on the Rights of Persons with Disabilities (SIM Special Issue, Netherlands Institute of Human Rights, 2012): at 92. 80. See Bach and Kerzner (2010), supra note 13, at 31. 81. See the UN Convention on the Rights of Persons with Disabilities, Article 12 Definitions. It states: “For the purposes of the present Convention:… ‘Reasonable accommodation’ means necessary and appropriate modifications and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedom.” 82. K . Arscott, K. B. Stenfert, and D. Dagman, “A Study of the Knowledge That People with Intellectual Disabilities Have of Their Prescribed Medication,” Journal of Applied Research in Intellectual Disabilities 13, no. 2 (2000): 90-99. And also see, L. Goldsmith, H. Skirton, and C. Webb, “Informed Consent to Healthcare Interventions in People with Learning Disabilities: An Integrative Review,” Journal of Advanced Nursing 64, no. 6 (2008): 549-563. 83. This easy format language is a clear language that persons with intellectual disabilities can easily understand the consistency of the language. This means using plain English language that is clear and simple format; using short sentences (no complicated phrases and words), and sometimes using pictures to convey the information. 84. See Bach and Kerzner supra note 13, at 86. 85. See the website of the NUI Gulway, Centre for Disability, Law & Policy, “Making Your Decisions (Your Health): A Guide to Support Decision Making,” available at (last visited September 23, 2013). 85. P. Schweigert and C. Rowland, “Early Communication and Micro Technology: Instructional Sequence and Case Studies of

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S Y MPO SIUM Children with Severe Multiple Disabilities,” Augmentative and Alternative Communication 8, no. 4 (1992): 273-286. 86. M. Schepis, D. Reid, and M. Behrman, “Acquisition and Functional Use of Voice Output Communication by Persons with Profound Multiple Disabilities,” Behavioral Modification 20, no. 4 (1996): 451-468. 87. See Bach and Kerzner, supra note 13, at 84. 88. Id., at 93. 89. See Section 5 of the Mental Capacity Act (2005) of the UK. 90. See Section 2(1) of the Mental Capacity Act (2005) of the UK. This section of the law leads to determine what it means to have a disturbance or an impairment of the brain. Section 3(1) of the MCA states, “the individual is unable to understand, retain that information, use or weight up that information as part of the decision-making process, or to communicate this decision.” 91. The Mental Capacity Act – guided by the Code of Practice (Department for Constitutional Affairs) – describes factors as a “best interest checklist” which is in paragraph 5.6 of the Code of Practice. It includes whether capacity will be regained, and

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if so when, whether the person can be permitted and encouraged to participate in the decision regardless of their lack of capacity, certain special consideration for life sustaining treatment, the person’s wishes, feelings, beliefs and values, the view of other people who are deemed practicable and appropriate to consult, and all other circumstances deemed to be relevant. 92. M. C. Dunn, C. H. Isabel, J. A. Holland, and M. J. Gunn, “Constructing and Reconstructing ‘Best Interests’: An Interpretative Examination of Substitute Decision-making under the Mental Capacity Act,” Journal of Social Welfare and Family Law 29, no. 2 (2007): 117-133, at 123. 93. M. C. Dunn, C. H. Clare, and A. J. Holland, “Substitute Decision-Making for Adults with Intellectual Disabilities Living in Residential Care: Learning through Experience,” Health Care Analysis 16, no. 1 (2008): 52-64, at 55. 94. Id., at 60. 95. Id., at 56. 96. Id., at 64. 97.  Id., at 58.

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