Assisted Decision-Making (Capacity) Bill 2013: Report and Final Stages

I move amendment No. 3:

In page 10, between lines 24 and 25, to insert the following:” “best interpretation” means the interpretation of the relevant person’s past and present communication (using all forms of communication, including, where relevant, total communication, augmented or alternative communication, and non-verbal communication, such as gestures and actions) that seems most reasonably justified in the circumstances;”.

The Minister of State is extremely welcome to the House. Before I speak to this amendment, I want to congratulate her on her work on the mental health (amendment) Bill which seeks to remove the use of coercion in the application of ECT. I acknowledge that a Bill was published by the former Senator, Dan Boyle, as she knows, and I would particularly like to pay tribute to my cousin John McCarthy, God rest him,I can almost hear him using wonderfully colourful language and including words “about time” but it is great that this Bill will be progressing and well done to the Minister of State for doing that.

In association with my colleague, Senator Katherine Zappone I want to acknowledge the support of NUIG Centre for Disability Law and Policy and Tallaght Trialogue. While most people simply require recognition of their legal capacity and support to express their will and preferences there will still be a small minority of individuals who are not expressing a will and preference in a manner that others can understand. The Bill must establish the lawful response to such circumstances. However, I do not believe that a functional assessment of a mental capacity, and a subsequent denial of legal capacity, is the correct response to these difficult situations. A person in a coma or in a minimally conscious state, for example, will not be communicating their will and preferences to others and may not have made their wishes known in advance through an advanced health care directive or granted a power of attorney to anyone in respect of their relevant decision.In these circumstances decision making assistants, co-decision makers, decision making representatives, attorneys or designated health care representatives may need to make a decision on the relevant person’s behalf in accordance with their best interpretation of his or her will and preferences. While the Bill does require all interveners to respect the person’s will and preferences as part of the guiding principles included in section 8, further reference to the concept of best interpretation of will and preferences is needed for the hard cases in which it is very difficult to tell what a person’s wishes are.

The term “best interpretation” needs to be defined in section 2 of the Bill to guide those in the supportive roles I have outlined. Best interpretation of a relevant person’s will and preferences means taking into account past express preferences, where known, and includes knowledge gained from family and friends and other evidence available. Best interpretation can also be arrived at in seeking to communicate with the person in every possible way, including by using, where appropriate, assisted and augmentative communication, facilitated communication, signs, gestures and total communication, all of which are noted in the regulations and code of practice.

The use of best interpretation will rarely be an easy task. However, the best interest determinations used currently are similarly difficult in these circumstances. The provisions of Article 12 of the UN Convention on the Rights of Persons with Disabilities are merely shifting these difficult decisions from focusing on judgments existing outside the individual to the individual’s own will and preferences. That is why I am trying to insert a definition of best interpretation. We do need to deal with the hard cases, too.

I move amendment No. 6:

In page 15, to delete lines 10 to 36 and substitute the following:“3. (1) Legal capacity may be exercised:
(a) by the relevant person with decision-making supports as needed (including a decision-making assistant) and/or reasonable accommodation; or

(b) by the relevant person and their co-decision maker, acting jointly; or

(c) in a situation of last resort, where all efforts to ascertain the relevant person’s will and preferences have been made and the relevant person’s will and preferences remain not known, legal capacity may be exercised by the person(s) selected to represent the relevant person in exercising the relevant person’s legal capacity (i.e. decision-making representative, attorney, or patient-designated healthcare representative in advance healthcare directive).
(2) Where legal capacity is exercised with the support of a decision-making assistant, codecision-maker, or is being made by a person selected to represent the relevant person (decision-making representative, attorney, or patient-designated healthcare representative), and where the relevant person’s will and preferences are not known, the decision shall be guided by the individual’s best interpretation of the relevant person’s will or preferences and how these are to be applied to a specific decision(s).

(3) In applying subsection (2), decision-making assistants, co-decision-makers and persons selected to represent the relevant person must be able to provide a reasonable account of how this interpretation was arrived at.”.

I propose this amendment to change the definition of “capacity” in the Bill and to move away from a functional test of mental capacity which is used in the current text of the Bill to deny the legal capacity both of adults with disabilities or mental health experiences and of older people. The amendment would replace the definition of “mental capacity” in the Bill with a recognition of the legal capacity which all adults enjoy.

This amendment is based on the explicit recognition of legal capacity and the principle set out by the UN Committee on the Rights of Persons with Disabilities that a functional assessment of mental capacity should never be used to restrict or deny a person’s legal capacity, even in respect of a single decision. The amendment draws on a proposal contained in A Statutory Framework for the Right to Legal Capacity and Supported Decision-Making by the Canadian Association for Community Living, CACL, which was published in 2012. The CACL was a key actor in the reform of Canadian adult guardianship law in the 1990s.It resulted in innovative statutory mechanisms such as co-decision-making and representative decision-making agreements, which influenced the Assisted Decision-Making (Capacity) Bill here.

Functional assessments of mental capacity are now understood to violate human rights. In the terms of the United Nations Committee on the Rights of Persons with Disabilities, functional assessments of mental capacity are “discriminatorily applied to people with disabilities”. In April 2014 the committee stated:

[The] functional approach is flawed for two key reasons. The first is that it is discriminatorily applied to people with disabilities. The second is that it presumes to be able to accurately assess the inner-workings of the human mind and to then deny a core human right – the right to equal recognition before the law – when an individual does not pass the assessment. In all these approaches, a person’s disability and/or decision-making skills are taken as legitimate grounds for denying his or her legal capacity and lowering his or her status as a person before the law. Article 12 does not permit such discriminatory denial of legal capacity, but rather requires that support be provided in the exercise of legal capacity.

Instead of requiring a person who needs support with decision-making to undergo an assessment of his or her mental capacity, these supports should be provided for the person to avail of at his or her own discretion. The availability of supports should also be combined with a parallel process to explore the person’s will and preferences, something we have debated quite a lot on the floor of the House, so that the decision the person wishes to make becomes clear. This approach avoids any need for an assessment of mental capacity.

Section 3 of the Bill makes a person’s ability to enter into different support arrangements contingent on the individual’s mental capacity. This is quite a high standard for an individual to reach and will mean that some people will not be found eligible to make assisted decision-making agreements and co-decision-making agreements, even where this is the form of support the individual and his or her supporters would most likely use.

Under the Bill in its current form, the term “presumption of capacity” is used to try to prevent discriminatory application of functional assessments of mental capacity. However, two international human rights scholars, Oliver Lewis and Michael Bach, stated at a meeting in Belfast in April 2014 that a presumption of mental capacity is meaningless as it does not help to protect the individual’s human rights. They argue that the right to equal recognition before the law, from which the right to legal capacity stems, is a guarantee, not a presumption. In contrast, a presumption can be rebutted if evidence is provided to demonstrate that a certain individual is not worthy of equal recognition before the law.

This amendment is required to ensure Ireland meets its obligations under international human rights law and will, upon ratification, comply with Article 12 of the UN Convention on the Rights of Persons with Disabilities, which we all wish to do. This is why I have tabled the amendment.

Full debate https://www.kildarestreet.com/sendebates/?id=2015-12-15a.222&s=speaker%3A393#g287

The Lancet

In July 2021, Jillian co-authored an article in the world-renowned medical journal “The Lancet”