Essex Autonomy Project at the Committee on the Rights of Persons with Disabilities

In response to the work of the UN Committee on the Rights of Persons with Disabilities (the Committee), a worldwide reform processes of mental health and mental capacity legislation has begun. In advance of the United Kingdom’s review by the Committee in 2017, the Essex Autonomy Project (EAP) will hold a side event at the 15th session of the Committee on 31 March, 2016, 9am at Palais Wilson.

By Risa Tominaga

The goal of the side event is twofold: to update the Committee regarding the situation in the UK, and to contribute to the operationalization of human rights protections at the UN level in the area of mental incapacity. In an interview with Professor Wayne Martin, Director of the EAP, we discussed the project’s goals in relation to the UK’s compliance with the Convention on the Rights of Persons with Disabilities (CRPD) and the Committee’s future development.

At the UK’s review in 2017 the Committee will assess progress taken by the UK towards compliance with the Convention. The UK will be required to provide information in relation to the UK’s three devolved jurisdictions: the Mental Capacity Act (MCA) of England and Wales, the Adults with Incapacity Act (AWI) of Scotland, and the recently approved Mental Capacity Bill (MCB) of Northern Ireland. These pieces of legislation all share certain commonalities, but how they are applied in practice may differ from jurisdiction to jurisdiction. Professor Martin highlights this difference as “a test bed of democracy” an opportunity “to look at what’s most effective in advancing human rights, particularly in the context of care.” In other words, the UK has the opportunity to learn lessons from its devolved jurisdictions about what works best in practice. Prof. Martin notes that the EAP’s aim is to take lessons learned from the UK and to “feed them into the broader process of deliberation at the UN level about how to actually realize the goals of the CRPD.”

In this light, the Essex Autonomy Project, in cooperation with Edinburgh Napier University, leading lawyers, public figures from around the UK, and the Human Rights Commission in Northern Ireland, is studying different elements of the legislation, in order to identify the most appropriate path towards CRPD compliance. Having gathered information from disabled persons organizations (DPOs) and public consultations they are now developing a set of recommendations regarding legislative change. For example, Mr. Colin Caughey, a policy leader at the Northern Ireland Human Rights Commission, highlighted that, at the upcoming side event, he will provide the Committee with information about law and practice in Northern Ireland, framing this in the context of international best practice, with the aim of encouraging the Committee to make recommendations that can be used to press for positive change.

Professor Martin believes that the project has the potential to contribute to the Committee’s development of guidelines for the operationalization of human rights protections in accordance with CRPD. However, he is also waiting to see how receptive the Committee is to their input, especially regarding one point on which they disagree with the Committee. He explains the disagreement as follows: “The Committee holds that the exercise of legal capacity should not be contingent on the ability to make decisions (decision-making capacity)”, with the result that “the Convention requires abolition of any competency requirement on the exercise of legal capacity”. The EAP holds a different position. They argue that while everyone absolutely has ‘passive legal capacity’, which refers to the recognition of the person before law and their rights, they think that there are some persons who lack ‘active legal capacity’, which is the ability to actually make changes with legal effect (e.g. to sign a contract, to marry, etc). More technically put, he says, “the Committee thinks that ‘substitute decision-making’ needs to be abolished, and replaced by ‘supported decision-making’, whereas we believe that a human rights regime needs to have a combination of both.” Substitute decision-making involves a third person making a decision on the concerned person’s behalf where he/she is unable to make a decision about a particular matter. This approach is currently adopted in many jurisdictions around the world. By contrast, the third person’s role in supported decision-making is not to make decisions for the concerned person but to identify what it is that the person wants in order to give effect to what Committee refers to as the ‘will and preference of the person’. In short, the Committee’s position is that decisions should always defer to the will and preferences of the person even if he/she lacks decision-making capacity.

The EAP takes a position that abolishing all substitute decision-making would have adverse consequences for human rights protection and so an appropriate balance needs to be established between protection and respect for autonomy. The EAP accordingly advocates the ‘rebuttable presumption approach’. The idea is that decision-making for a person with incapacity should start off from the presumption that we are going to do what the person wants to be done, but when there are exceptional circumstances where the consequences of doing so is sufficiently grave, the right thing may be to act contrary to their will or preference. In these cases, and with appropriate safeguards in place, the EAP believes that substitute decision-making is appropriate — and indeed may be required in order to protect fundamental rights and freedoms.

Although he holds a contradicting view on this particular point, Professor Martin stresses his respect for the UN human rights community and for the Committee’s work. It will be interesting to see how the input of the EAP and the development of the UK’s laws might eventually spark a conversation at the UN and worldwide level about how to actually put the promises of the CRPD into effect while striking the right balance between protection and respect for autonomy where decision-making capacity is impaired.

Disclaimer: The views expressed herein are the author(s) alone.

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