The concept of the minimum threshold of what it means to be a person who exercises and enjoys legal capacity, and the concept of decision-making capability, provide a much more inclusive framework for recognizing the right to legal capacity without discrimination on the basis of disability. Nonetheless, how people actually exercise their legal capacity will vary depending on the nature of their decision-making abilities and on the combinations of supports and accommodations they require to turn their decision-making ability into actual decision-making capability. A person who easily meets the ‘understand and appreciate test’ in the eyes of others will be respected as someone who goes into financial institutions or a doctor’s office and can make decisions for themselves by themselves. Someone who can only meet the minimum threshold as defined above will require others to assist them in representing themselves to others in the decision-making process.
How do we define the scope of decision-making supports encompassed by Article 12(3) that are integral to constituting a person’s decision-making capability? We suggest three main types of supports:
· Supports to assist in formulating one’s purposes, to explore the range of choices and to make a decision;
· Supports to engage in the decision-making process with other parties to make agreements that give effect to one’s decision, where one’s decisions requires this; and
· Supports to act on the decisions that one has made, and to meet one’s obligations under any agreements made for that purpose.
These criteria for defining decision-making supports are not fully inclusive of all the potential supports that could affect the exercise of a person’s legal capacity. For example, financial resources, housing and disability-related supports, etc. all affect the exercise of legal capacity in that the extent to which one has such resources expands or diminishes the range of one’s choices. However, this broad range of supports – including income, disability-related supports, housing accessibility, etc. – we anticipate would likely be interpreted to be outside of the scope of “supports” envisioned by Article 12(3). State obligations to ensure these broader financial and community supports are accessed by people with disabilities are covered under other Articles of the CRPD including: Article 9 ‘Accessibility;’ Article 19 ‘Living independently and being included in the community;’ Article 20 ‘Personal mobility;’ Article 24 ‘Education;’ Article 28 ‘Adequate standard of living and social protection;’ and others.
We expect that the scope of Article 12 is more likely to be interpreted as encompassing those goods and services that directly affect the exercise of one’s legal capacity in the context of the decision-making processes one engages in to make individual decisions, understanding that the context for doing so is constrained in unequal ways for individuals depending on historic disadvantage and a range of other factors.
If we start with an account of legally capable human agency that is broader than the one usually assumed in capacity law, and keep the ‘minimum threshold’ in mind of the person whose will and/or intentions directs those supports, then at least six substantially different (although not mutually exclusive) kinds of supports to exercise legal capacity as provided for in Article 12(3) of the CRPD come into view:
· Life planning
· Independent advocacy
· Communicational and Interpretive
A. Life Planning Supports
We choose our priorities and make individual decisions in the context of some understanding of our values, purpose and plans for our life. For most of us, most of the time, life may not feel very planful – so many contingencies disrupt our best laid plans. Nonetheless, even while we are constantly adjusting our plans, and priorities are shifting, we operate from an assumption that it is a good thing to have some direction in our lives. It is on this basis that we make day-to-day decisions, and the larger, defining decisions for our life paths.
Many people who have more significant intellectual, cognitive and psychosocial disabilities and who have been institutionalized and/or isolated through poverty and exclusion in their communities are often lacking these directions in their lives. It can be extremely challenging to make decisions about where to live, or how to be supported, or whether or not to accept certain medications or health care interventions over others. One of the key supports people require is assistance in person-centred life planning – a process of identifying values and purpose, making key decisions congruent with those interests, and making and executing the necessary agreements. Without such supports, individuals may be confused, uncertain and unclear in decision-making processes with others, and appear unable to make decisions.
A variety of community-based services and models are in place to provide such planning assistance. However, it is not universally accessible to those who require and would benefit from these services. As well, those who provide the service are often attached to funding agencies or service providers and the planning process is used to funnel individuals into certain funding levels or service models. The independence of such planning supports from funding agencies and residential care or home care providers has been identified as a critical component in the effectiveness of such services.
B. Independent Advocacy
People with more significant intellectual, cognitive and psychosocial disabilities can often guide their own decision making. However, other parties to agreements, educated and operating within the assumptions of traditional capacity law, often assume otherwise. Challenging these assumptions, and those who would question a person’s capacity, may be beyond the skills and personal resources of the individual with a disability. Access to independent advocacy may be a needed support in these situations to assist the individual in expressing their wishes and informing other parties of the individual’s rights, and of the other parties’ duties to respect those rights and accommodate accordingly.
There is an important role to be played by non-legal or social advocacy whenever a legal regime removes the right of an individual to make decisions. This view has been held by the disability community for several years; the Ontario Association for the Mentally Retarded (now Community Living Ontario) called for the establishment of an independent advocacy system in the early 1980s. The role of an advocate can be seen as facilitating the implementation of decisions made by an individual who may wish support and assistance in doing so. This role emphasizes self-determination and independence. In more general terms, advocacy is consistent with ensuring “…full participation in the daily life of our communities by all those who so desire.” However, the line between giving advice, information or support and actually making or being seen to be making decisions for another person without their guidance must be kept clear. This line is a fine one, which can easily be crossed in practice.
An advocacy model could be community-based and advocacy services could be provided by volunteers or professionals. There is precedent for creating an advocacy framework in legislation. See, as an example, the Provincial Advocate for Children and Youth Act, 2007 as well as Ontario’s Advocacy Act, 1992. Even though the Ontario legislation has been repealed, it is a useful model to look at as an example.
Reference should be made to “You’ve Got a Friend”, the Report of the Review of Advocacy for Vulnerable Adults in Ontario, for a thorough examination of the nature of, and various options for, the delivery of advocacy.
C. Communicational and Interpretive Supports
One of the main challenges that persons with more significant intellectual, cognitive and psychosocial disabilities face in decision-making processes with other parties relates to their oftentimes unique forms of communication. Different oral and non-verbal signs of communication may not be understood by third parties, and individuals may require augmentative and alternative communication systems. These may include signing, gestural and vocalization systems, computer-assisted and electronic devices as well as non-electronic communication output aids.
As well, individuals may require interpretive assistance for intake and processing of information from other parties, including plain language assistance, sign language interpreters and a range of computer-assisted voice activation and other devices. All of these supports assist a person in managing the communication and processing of information essential to making decisions and communicating them to others.
D. Representational Supports
For people with very significant intellectual, cognitive and/or psychosocial disabilities, planning supports, advocacy and communicational and interpretive supports may not be enough for other parties to understand them sufficiently to enter agreements with them. These are the individuals who are close to the ‘minimum threshold’ of human agency identified above. Others cannot encounter them as individuals because they do not have the understanding of their forms of communication, their life histories, their wishes and hopes for the future, or their basic intentions. In these situations, the individual often disappears in the eyes of others behind the clinical categories that so dominate their biographies.
What we refer to in this paper as ‘representational’ supports are required in these situations. Other individuals help communicate who a person is, and to share their biography with others. These are individuals who have a knowledge of the person born out of a relationship of trust and understanding of their unique ways of communicating, and who, through shared life experience, have come to understand who the person is, what he or she values and wants and what he or she dislikes or rejects.
This personal knowledge of another is the foundation on which the individual can be represented to the world, and is the basis on which decision-making processes can be managed. Those providing representational support may assist the person by carrying out the intellectual processing required to translate intentions and wishes into actual decisions and agreements with others.
Representational support is distinguished here from Powers of Attorney or other agents appointed by an individual to act on his/her behalf. In these cases, an individual is still acting legally independently in the sense that the test for appointing such agents is that the individual appreciates the nature and consequences of the appointment. While the agent may ‘represent’ the person in making agreements, this is distinct from what we define as ‘representational support’ above. By that term, we mean representatives who assist the person directly in communicating their person to others – which may involve interpreting the individual’s actions and behaviours, and narrating the person’s identity – wishes, hopes, fears – to other parties.
As outlined above, this form of support is recognized in the B.C. Representation Agreement Act, which provides for an individual to appoint others to assist in making decisions or to make decisions for them.
E. Relationship-building Supports
Many individuals with significant intellectual, cognitive and psychosocial disabilities simply do not have others in their lives with whom they are in a trusting relationship based on shared life experience and personal knowledge. A life of discrimination and exclusion has left them without such relationships. This does not mean that such relationships cannot be developed. There is a large body of good practice and tools to assist people with more significant disabilities in developing personal relationships with others. However, this work takes time, intentional relationship building, and community-based supports to facilitate the process, identifying individuals who can play this role and provide the person with a support network.
For people with significant disabilities the outcome of relationship-building supports is the development of relationships and support networks which can provide representational supports at some point in the future. In their case, the access to representational supports maximizes exercise of their legal capacity.
F. Administrative Supports
Entering agreements with others that give effect to one’s decisions can also require a range of administrative supports – for example, completing arrangements for a loan, or purchases. As well, there is growing use of individualized and direct funding to enable people with disabilities to purchase their disability-related supports and services. This method of funding provides for greater choice in deciding which supports to use, which attendants to hire, or which home-care agencies to contract. As policy consideration is given to individualized, direct funding, which can significantly enhance autonomy, questions of legal capacity often come to the fore with respect to persons with intellectual, cognitive and/or psychosocial disabilities. Even if the person can choose the people he/she would like to deliver services, and can provide even limited direction, how can they manage funding which may run into the thousands of dollars per month? This concern can become a reason for restricting access to this form of funding, and thereby can lead to a restriction of a person’s autonomy in decisions about their disability-related supports and services.
Administrative supports are a key element of the support system in assisting individuals to carry out the agreements into which they enter. A variety of arrangements have been established through agreements between individuals, funding agencies, financial institutions, and community agencies to provide an administrative structure for managing funds, paycheques and remittances for persons receiving individualized funding for their supports. When such supports are inaccessible or unavailable, the prospects for individuals to significantly enhance their autonomy are thereby limited.
In summary, different and unique combinations of types of supports will be accessed by people differently due to their own unique personality, characteristics and needs. The framework we propose in this paper envisions that the right to access supports includes a right to access the types of supports and combinations of supports that most enhances each person’s autonomy. It cannot be assumed that a regime which legislatively recognizes ‘supports’ fully embodies this vision. For example, Manitoba’s The Vulnerable Persons Living with a Mental Disability Act appears at first blush to fully embrace ‘supported decision-making’. However, ‘supported decision making’ is defined in the Act as follows: “… ‘supported decision making’ refers to the process whereby a vulnerable person is enabled to make and communicate decisions with respect to personal care or his or her property and in which advice, support or assistance is provided to the vulnerable person by members of his or her support network.” This definition appears to limit itself to support networks and, in any event, may well not be interpreted to include the broader range of supports to which individuals should have access under Article 12(3) of the CRPD.
|First Page||Last Page|
|Table of Contents|