The Challenge: The CRPD and the Right to Legal Capacity

Vol. 42 No. 2

By

Kristin Booth Glen (kbg@mail.law.cuny.edu) retired from her position of judge on the New York County Surrogate’s Court at the end of 2012. She has also served as a judge on a number of other New York courts, and she is dean emerita of the CUNY School of Law. She is a former chair of the ABA Commission on Law and Aging.

In 2006, the United Nations adopted the Convention on the Rights of Persons with Disabilities (CRPD). This groundbreaking document, which was the result of activism and participation by the disability rights movement, moves the context of disability from a medical or social model to a human rights model. The CRPD came into force in 2008 after 20 states ratified it. There are currently 127 states that are parties to the CRPD. Although the United States has signed the CRPD, a vote on ratification was defeated in a lame-duck session of the U.S. Senate in December 2012, and, accordingly, the United States is not a state party at this time. Ratification is likely to come to a vote again in 2013.

This article focuses on one significant achievement of the CRPD, and that is its inclusion of Article 12. Article 12 makes clear that people with disabilities have the right to control decisions about their lives with whatever kinds of support they require and that states parties are obliged to establish the arrangements to make this possible. This includes enabling a person with significantly challenging disabilities to exercise control over decisions through the assistance of support persons who, in their relationship of personal knowledge and trust with the person, commit to interpreting and acting on that person’s preferences and will in decision making.

Article 12 recognizes the right of persons with disabilities to equal recognition before the law and the attendant right to legal capacity. Persons with disabilities have the right to recognition everywhere as persons before the law. They enjoy legal capacity on an equal basis with others in all aspects of life. Thus, all persons have full legal capacity. They have the right to make and act on their own decisions and to have those decisions legally recognized.

At the time the CRPD was being negotiated, the Office of the United Nations High Commissioner for Human Rights prepared a “Background Report,” available at http://www.un.org/esa/socdev/enable/rights/ahc6documents.htm, that reviewed the concept of legal capacity and arrived at a definition that is inclusive of persons who may not act entirely independently in their decision making:

Legal capacity includes the “capacity to act,” intended as the capacity and power to engage in particular undertakings or transactions, to maintain a particular status or relationship with another individual, and more in general to create, modify or extinguish legal relationships.

This definition makes clear that legal capacity is about having the recognized “power” to enter into transactions, contracts, and legally regulated relationships with others.

Article 12 requires states parties to provide access to persons with disabilities to the support they may require in exercising their legal capacity, called “supported decisionmaking.” In acknowledging that people can exercise their legal capacity in different ways and with a range of supports, Article 12 provides new ground on which people with disabilities can retain and rebuild their self-determination. It is a kind of “ramp” of accessibility for adults who have long been denied the right to equal recognition before the law and to the process of controlling decisions that affect their lives.

For governments to fulfill their obligations under Article 12 requires what many have referred to as a “paradigm shift” in the usual approaches to protecting and promoting the right to legal capacity. See, e.g., Mental Disability Advocacy Ctr., Supported Decision-Making: An Alternative to Guardianship, available at http://www.globalmentalhealth.org/sites/default/files/MDAC%20Supported_Decision-making_An_Alternative_to_Guardianship.pdf. Adults can no longer be required to demonstrate that they can meet certain tests of mental capacity in order to have their rights to legal capacity equally respected and protected. For people with intellectual, cognitive, or psychosocial disabilities in particular, Article 12 is essential to self-determination and equality, which are fundamental tenets of the disability rights movement. The legacy of centuries of confinement and exclusion based on the idea of “mental incapacity” is that people with intellectual, cognitive, or psychosocial disabilities are often considered to have a lesser moral and legal status than other human beings. The result has been laws, policies, and practices in every sector of society that deny equality on the basis of disability, whether through guardianship or through denial of the rights to vote (still the case in some countries), to make one’s own healthcare decisions, and to make decisions about where one will live and with whom and how one’s money and property will be managed.

Entry Points

Legal capacity is lived in everyday life in the many transactions and agreements we all make. The right to “living independently and being included in the community,” recognized in Article 19 of the CRPD, for example, relies on people being able to enter into these agreements—whether to rent an apartment, open a bank account, get married, or direct their healthcare and disability supports. Many of the other rights recognized in the CRPD, such as the right to health (Article 24), education (Article 25), and work (Article 27), also rely for their full realization on people with disabilities being able to make decisions in their lives and to being supported as necessary. This means that doctors, bankers, service agencies, support networks, and family and community members all have responsibilities to promote and enable decision making processes that are inclusive, supportive, and accommodating of people with disabilities.

The challenge for law reform is to craft legislation that makes clear the duties and responsibilities of all these actors, recognizes the systematic powerlessness and exclusion of many people in decision making about their lives, and creates the right balance of rights, responsibilities, and liabilities to enable people to lead and live good lives in the community in pursuit of their own life paths. Not only do we need to find, develop, and facilitate support systems, we also need to have legislation that creates legal recognition for them.

Supports

Article 12 makes clear that states parties have an obligation to ensure access to supports that persons with disabilities may require to exercise their legal capacity. People need different kinds of supports in different situations, supports that are based on their particular disabilities. With supported decision making, the person is the decision maker. The handbook on the CRPD (see Dep’t of Econ. & Soc. Affairs, Office of United Nations High Comm’r for Human Rights, & Inter-Parliamentary Union, From Exclusion to Equality: Realizing the Rights of Persons with Disabilities, available at www.un.org/disabilities/convention/conventionfull.shtml) points out:

Supported decision-making can take many forms. 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, interests and aims in life, and is someone capable of exercising his/her legal capacity.

Some supports can be accomplished by reasonable accommodations provided by the person or entity involved in the transaction. These may include communicational and interpretive supports such as plain language assistance, sign language interpreters, computer-assisted voice activation and other devices, as well as extra time for reading (or being read to) and comprehension—all to assist persons with disabilities in exercising their legal capacity in a legally independent manner.

Where greater support is necessary, legislation is necessary to recognize supportive arrangements that aid persons with more significant intellectual, cognitive, and/or psychosocial disabilities to make decisions or to choose others to make decisions on their behalf. “Representation agreements” are one possible model for the creation and legal recognition of such arrangements. In British Columbia, Canada, a person with a disability can enter into such an agreement with a support network simply by demonstrating “trust” in the designated supporters. The agreement signals to doctors, financial institutions, service providers, and others that the person has authorized the network to assist him or her in making decisions and representing him or her in certain matters. A community-based Representation Agreement Resource Centre oversees a registry in which a network can post an agreement for other parties to view if that is required in order for them to enter a contract with the individual.

As a practical matter, it is necessary to decide which procedure will be used to make an appointment (or execute a representation agreement) that will be legally recognized, that is, that has the official imprimatur that will allow third parties to rely on it without fear of subsequent liability. Here, it is useful to think of how we move this outside of the courts, whether simply through the registration of representation agreements or by some more official review and imprimatur of agreements and/or support arrangements. Which existing entities, if any, might be appropriate to bestow approval that translates to adequate guarantees for third parties? Which existing entities might be reengineered for this purpose? What new entity might it be practical to create? And, having identified the place where recognition will be legally guaranteed, what are the standards that should be applied to ensure against coercion or abuse?

However, some persons with disabilities will not be able to be sufficiently supported or accommodated by others to fully exercise their legal capacity. For example, some people may not have any people in their lives who understand their ways of communication, their will, and /or their intentions. Alternatively, others may have people in their lives who have personal knowledge about them but who cannot discern the person’s current will and/or intentions in a way that is sufficient to guide decision making. For these individuals, “a temporary ‘facilitated’ decision-making legal status [might] be established . . . while personal relationships can be built that would enable the person’s will and/or intention to become known by others as the basis for decision making.” Michael Bach & Lana Kerzner, A New Paradigm for Protecting Autonomy and the Right to Legal Capacity, available at www.lco-cdo.org/disabilities/bach-kerzner.pdf.

Preventing Abuse

The CRPD clearly recognizes the need to prevent abuse, neglect, and exploitation, including in the context of supported and facilitated decision making. Article 12 provides: “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.” Safeguards must “ensure that measures relating to the exercise of legal capacity . . . 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 Mental Disability Advocacy Center states that “[t]o ensure supported decision-making works correctly and effectively in place of substituted decision-making under guardianship, a number of safeguards should be put in place to prevent and remedy any forms of physical, emotional or financial abuse, or neglect, that may occur.” Mental Disability Advocacy Ctr., Supported Decision-Making, supra. However, the Center cautions that any safeguards against abuse “should not overprotect people with disabilities, but must respect the inherent dignity, individual autonomy—including the freedom to make one’s own choices—and independence of persons.”

While many strategies are needed to fully implement Article 12, there is no doubt that substantial law reform is required. No single piece of legislation currently exists anywhere that pulls together all the pieces needed to ensure a right to legal capacity. These pieces include the supports to exercise this right to legal capacity, changes in the roles and duties of government and those of other parties in the decision-making process, support networks, and community agencies. Reform and compliance with the CRPD will require moving from a more traditional model of disability to one grounded in human rights and proposals for creating supported decision-making models that are realistic in terms of the resources currently or foreseeably available.

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