Legal capacity law reform: The revolution of the UN Convention on the rights of persons with disability

by Gerard Quinn, Professor of Law, Director, Centre for Disability Law & Policy, NUI Galway.

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What should modern legal capacity laws look like? Most international attention is focused now on Article 12 of the new Convention on the Rights of Persons with Disabilities which guarantees ‘Equal Recognition under the Law.’ Indeed, many commentators say that Article 12 is the very lynchpin of the new Convention. The emphasis placed in Article 12 on respecting the person’s will and preferences reflects the revolution in the Convention in moving away from treating persons with disabilities as ‘objects’ to be managed or cared for by others, to ‘subjects’ capable of determining their own destinies and deserving of equal respect. What is so different about this and what difference does Article 12 make to the debate about the reform of legal capacity law in Ireland?

From a philosophical point of view the right to make decisions for oneself is profoundly important. It acts as a sword to enable one to make one’s own choices (e.g., where to live, with whom to live) and have those choices respected by others. It also acts as a shield fending off others when they purport to make decisions for us—even when well intentioned. Legal capacity to make decisions is said to flow from a recognition of personhood—something that does not depend on cognitive ability.

This is not to say that decision-making deficits do not exist. However, the typical response of the law in the past to these deficits—all around the world and not just in Ireland—is to allow others to make decisions in the place of the individual. This is so-called ‘substitute decision-making’. In the more extreme case this is done through plenary guardianship (which means the third party assumes the right to make all decisions and totally supplants the person) or partial guardianship (the right to make certain kinds of decisions).

The UN Convention on the Rights of Persons with Disabilities is self-consciously designed to roll back the typical response of the law to any sign of a weakness in decision-making capacity. The drafters set their sights against several aspects of the past—and in the process, they set out a wholly new approach. What were they against?

First of all, the drafters of the Convention wanted to abolish the ‘status-based’ approach to legal capacity. Put simply, they wanted to break the connection between one’s status as a person with a disability and any quick assumption of legal incapacity. So it is not permissible under Article 12 to deprive a person of the right to make decisions for themselves simply because they have a disability. The analogy was women. In previous centuries women suffered a form of ‘civil death’ in that their personhood was merged with that of their husband and they were denied the legal right to make decisions for themselves. It took several hundred years to roll this back. Similarly, the drafters felt that persons with disabilities suffer a similar ‘civil death’ through plenary guardianship laws and this had to be stopped.

Secondly, the drafters wanted to abolish the ‘outcome’ approach, whereby legal incapacity might be inferred from a series or pattern of ‘bad decisions’. The point made by many delegations is that everybody enjoys a certain ‘dignity of risk’ to make their own mistakes. Most people learn from their mistakes—others continue to make the same mistakes. We don’t deprive ‘ordinary’ people of their right to make their own decisions simply because they make the same mistakes. The argument was put (and accepted) that if a pattern of ‘bad’ decisions was a ground to deprive someone of capacity then quite a lot of people would stand to lose it. Thirdly, the drafters wanted a different kind of response to frailty with respect to decision making (besides substitute decision-making or guardianship).

Instead of focusing on deficits as a ground for depriving people of their capacity, they wanted instead to place an emphasis on positive measures to support people in whatever level of capacity remained. That is why there is such a strong emphasis in Article 12.3 on the obligation of the State to put in place supports to enable people with disabilities to exercise their legal capacity—an idea that includes (but goes far beyond) supported decisionmaking.

`This concept of ‘support’ in Article 12 is critically important—and it should form the lynchpin of any future Irish legislation. It is hard to see how legislation that did not explicitly include this would be in compliance with the Convention. And there is a logical link between supports to enable persons with disabilities enjoy legal capacity and other provisions in the Convention. For example, it is hard to see how people could develop their decision-making capacities unless opportunities were afforded them to live independently and be included in community life. At one level one might say that the right to chose where to live, and with whom, depends on having legal capacity to make that choice. In that sense the achievement of Article 19 (right to live independently) depends on Article 12 (right to make decisions). But it could equally be said that independent living is a precondition to enable people to develop their own decision-making capacities. That is why the expected Irish report on ‘congregated settings’ is actually quite crucial to the debate on Article 12.

What does the notion of ‘support’ entail in practical terms? Three different scenarios might be kept in mind. First, there is the relatively straightforward case of someone who clearly has the capacity to form their own will and preferences, but who may require a measure of assistance in making decisions. Secondly, there may be someone who similarly has the capacity to form their will and preferences, but who may have difficulties in communicating them (this includes others besides those with intellectual disabilities). Here the task of supports or supporters is to divine the will and preference and express it for the person. Thirdly, there is the case of a person who—to all outwards intents—cannot form their own will and preference, perhaps because of decades of isolation in an institution. Here the supports may take the form of ascribing to the person their will and preference (given their culture and background), as well as embedding them in a web of community and social connections in order to spark the expression of their will and preference through time. This may look like substitute decision-making (guardianship), but it is not substitute decision-making as in the past. Superadded under Article 12 is an extra obligation to work actively to spark the will and preference.

It is worth bearing in mind that ‘supports’ need not be cost.intensive and therefore a financial drain on the state. In British Columbia, for example, ‘representation agreements’ can be entered with people who know the individual. The decisions made in these agreements bind others, such as doctors, dentists and landlords. And even if the supports cost the state, the state is still obliged to ‘progressively achieve’ their implementation under Article 12. In other words, the present lack of resources is no excuse not to put in place a system of supports that can grow through time.

There is a considerable body of opinion to the effect that guardianship laws (especially plenary guardianship laws) are completely inconsistent with Article 12. From this perspective, narrow guardianship laws that only target particular areas of decision making are also inconsistent with the Convention, even when multiple safeguards are added. One law reform trend around the world has been to whittle down guardianship laws and insist on safeguards like the principle of proportionality, etc. A fear is that if any exceptions are allowed (i.e., to allow even limited guardianship) then, because of the sheer weight of history, the exception will quickly become the rule. Therefore some maintain the legal fiction of complete capacity for all in all circumstances. In order to meet this, some states have entered ‘reservations’ to Article 12 to the effect that they are allowed to continue with guardianship measures. Other states have entered ‘interpretive declarations’ to the effect they understand Article 12 to still allow for guardianship (albeit more tightly drawn).

Perhaps the better view is that although the Convention decouples notions of incapacity from disability, there are still decision-making deficits that have to be handled. On rare occasions this will mean making decisions ‘for’ persons with disabilities as well as ‘with’ them and in response to their wishes. However, this should not be mistaken for guardianship law as usual. The new obligation to ‘support’ means that even in these cases efforts have to be made to augment existing capacity and grow capabilities.

What would be the practical implications of a new regime based on the assumption of capacity and the notion of supported decision-making? For one thing, it would substantially boost the right to say no! This would include a right to say no to medical interventions and the like. Put another way, it would enhance the right to give (or withhold) informed consent to medical treatments. Incidentally, many of the drafters of the Convention were at pains to point out that the notion of ‘best interests’ has no (or very substantially diminished) place in the context of adults with disabilities. For another, it would substantially enlarge one’s right to create one’s own legal universe with others. This would include contract powers—e.g., to manage one’s own financial and banking affairs, to enter into contracts with landlords, to sue or vindicate one’s rights in one’s own name, etc. Third parties (e.g., bankers) have a legitimate interest in the ‘reliance’ interest’ in such arrangements. They need to know that agreements will stand up and can be enforced. This is why it is so important to put into place (i.e., give legislative standing to) ‘supports’ such as ‘representation agreements.’

Article 12 is causing a revolution around the world— especially the move toward a supported decision making model. The new UN Committee on the Rights of Persons with Disabilities is currently drafting a General Comment (an important interpretive guidance) on Article 12. The Office of the UN High Commissioner for Human Rights is on record as stating that substitute decision-making is, in its view, inconsistent with Article 12.

In my view, any proposed Irish legislation that did not explicitly provide for a right to support in exercising legal capacity would be inconsistent with Article 12. It is not good enough to leave this to inference, as appears to be the case under the current Heads of Bill for the Capacity Bill. This notion of ‘supports’ need not mean an expanded state.driven bureaucracy. It is best if it doesn’t, since the lives of people with disabilities are far too enmeshed in intrusive regulatory regimes that most of us would reject in our own lives. But it would mean giving legal force to such innovations as ‘representation agreements’ as found in British Columbia. Ireland has yet to ratify the UN Convention. It has signed it, which indicates firm intention to ratify. In any event it is clear that plenary guardianship laws are already in violation of the European Convention of Human Rights.

1916 promised to remove the Poor Law from Ireland—it is time to make good on that Republican dream a hundred years on.

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