Mental Capacity Legislation: Discussion (Resumed)

Wednesday, 29 February 2012

Joint Committee on Justice, Defence and Equality Debate

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Chairman: Information on David Stanton  Zoom on David Stanton  The purpose of this meeting is to hold discussions with some of those groups which made a written submission on the heads of the proposed mental capacity Bill. On behalf of the joint committee, I welcome everyone to the meeting and thank them for giving of their valuable time and expertise to help members with their work in preparing a submission for the Department and the Minister on this important legislation. Before we begin, I ask everyone to turn off their mobile telephones completely and not simply to silent mode, because they interfere with the recording systems in the room.

On behalf of the joint committee, I welcome from the Office of the Council of Europe Commissioner for Human Rights, Mr. Lauri Sivonen, and from Amnesty International, Mr. Colm O’Gorman, Ms Karol Balfe and Mr. Charles O’Mahony. I thank them for their attendance and for the information they supplied to the joint committee. We propose to take one group at a time - this is the first group - and will come to the second and third groups later. I ask each organisation to make a brief opening statement of less than five minutes. Up to now, the joint committee has found the value of these meetings lies in the interaction with members and the subsequent questions. After the witnesses’ opening remarks, we will have a question and answer session and I ask members to have short, focused questions, as has been the case up to now. By virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of the evidence they are to give this committee. If a witness is directed by the committee to cease giving evidence in relation to a particular matter and the witness continues to so do, the witness is entitled thereafter only to a qualified privilege in respect of his or her evidence. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given and witnesses are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise nor make charges against any person or persons or entity by name or in such a way as to make him, her or it identifiable.

Members are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person outside the House or an official by name in such a way as to make him or her identifiable.

I now invite Mr. Sivonen to make his presentation and ask that he be as brief as possible.

Mr. Lauri Sivonen:  Thank you. My name is Lauri Sivonen, I am adviser to the Commissioner of the Office of the Council of Europe Commission for Human Rights. I extend the greetings of Commissioner Thomas Hammarberg to members of the joint committee.

The Commissioner visited Ireland in 2007 and 2011. He noted in his report last year the progress achieved through the national disability strategy and highlighted the need to reform legislation on legal capacity in Ireland. During his visit he was assured by the Minister, Deputy Shatter, that review of the legislation was under way.

Last week, the Commissioner published an issue paper entitled Who Gets to Decide - A Right to Legal Capacity for Persons with Intellectual and Psychosocial Disabilities. This paper includes the Commissioner’s recommendations for reform of legal capacity legislation and is also our submission to this hearing.

The Commissioner’s issue paper takes its starting point from the UN Convention on the Rights of Persons with Disabilities and, in particular, Article 12 thereof on equal recognition before the law, which is the beating heart of that convention. According to Article 12, persons with disabilities, including persons with intellectual and psychosocial disabilities and mental health problems should enjoy legal capacity on an equal basis with everyone else in all aspects of life. People with disabilities are subjects not objects and legal recognition is key to their enjoying all human rights as individuals and together with other people.

The starting point in this approach is that all persons have legal capacity and that states are obliged to make supports available enabling people with disabilities to fully enjoy all human rights when they want and need such supports. This is very different from attempting first to determine whether a person has the mental capacity to exercise legal capacity because that approach tends to reduce legal capacity rather than enable and maximise the exercise of human rights.

There have also been changes in the European system on human rights in this regard. The recent jurisprudence of the European Court of Human Rights, in particular the cases of Stanev v. Bulgaria, from January this year and DD v. Lithuania of February this year, in respect of which a decision is not yet final, refer to the UN convention and stress that international law now attaches growing importance to granting persons with psychosocial disabilities as much legal autonomy as possible and also stresses very clearly that the will and preferences of the persons concerned be taken into account in all decision making.

Previously, the European court had found that full incapacitation of persons with disabilities had not in many cases been proportional, which was a violation of the convention. This means that the members states’ margin of appreciation in this field is narrowing and also under the European convention. Most member states have ratified the UN convention and approximately 12 of them, including Ireland, are currently reforming their legal capacity legislation.

I would like now to go through the Commissioner’s recommendations in the issue paper, which recommendations are advice based on the provisions of the UN convention and the jurisprudence of the European Court of Human Rights. The first recommendation is that member states would ratify the convention and its option protocol and review their existing legislation in the light of Article 12 of the UN convention to enable persons with disabilities to fully exercise human rights. This review must be done with reference to guardianship legislation, restrictions on voting rights, compulsory care or treatment, which are critical areas, rights of property, family life, access to justice and freedom of association. States must ensure all these rights are fully enjoyed by persons with disabilities. Member states should also abolish mechanisms for plenary guardianship and full incapacitation in light of the European Court’s jurisprudence and develop supported decision making alternatives and safeguards for these supports. We need a legal framework for these supports and safeguards which ensures that supports offered are voluntary, proportional and free of conflicts of interest so that people with disabilities can really express their will and preferences.

States should also create legal obligation on authorities and service providers to provide reasonable accommodation, adjustments and cost implications. Also, reform of the law and creation of supports must be carried out in co-operation with the users, the NGOs and civil society. According to the UN convention we are not yet there. In the meantime, some provisional arrangements and safeguards will have to be put in place. Therefore, the Commissioner underlines that member states should, as a transitionary measure, end the formerly voluntary placement of persons with disabilities against their will in care institutions and provide persons with access to challenge any guardianship which they may be under in current systems.

The legal principles for a new law or legal framework on legal capacity are quite clear. Although we may not know all the details or practical arrangements for the supports needed, these supports can be devolved in practice with service providers, users and authorities concerned. Future legislation will need to be reviewed in the light of new developments in the field of human rights at European or international level. We have in the issue paper given some examples of the supports which can be put into place, including the personal ombudsman model in Sweden, which probably comes close to an advocacy support system and the support networks in British Columbia in Canada which include advance directives. All the elements for putting a new legal system in place exist. Ireland should be able to take the lead in this field and be an example to other European countries.

The Commissioner for human rights encourages Ireland to avail itself of this opportunity to ensure that all persons with disabilities can fully enjoy their human rights.

Chairman: Information on David Stanton  Zoom on David Stanton  I thank Mr. Sivonen for his interesting presentation. I now invite Mr. O’Gorman to make his presentation and ask that he too be brief.

Mr. Colm O’Gorman:  Amnesty International welcomes this opportunity to address the joint committee on this important legislation. Members will be aware that Amnesty International is a membership based campaigning organisation which has a mission to uphold and defend human rights. We have been campaigning in the area of mental health in Ireland since 2002. We conducted research with individuals who may be subject to this legislation because they have a mental health problem in respect of their views specifically about decision-making capacity. This research, along with the input of Amnesty International’s experts by experience advisory group, informed this submission.

We welcome the Government’s decision to conduct this long overdue reform of existing legislation and, crucially, its intention to ratify the UN Convention on the Rights of Persons with Disabilities. The absence of modern capacity legislation means that many people’s rights are being infringed and results in the creation of major practical difficulties for people with disabilities, their parents, families, carers and service providers.

In partnership with the Centre for Disability Law and Policy in Galway we facilitated the engagement of more than 15 organisations and individuals working on this issue. These organisations represent a range of perspectives and include Mental Health Reform, the Alzheimer’s Society of Ireland, Age Action, Shine, the National Federation of Voluntary Bodies and many others. Together we have developed ten key principles and recommendations which we believe should shape and guide the Bill as it develops. These principles are based on the spirit and values of the UN convention. We believe they can be an important guide to legislators seeking to ensure that Ireland will comply with the UN convention. Copies have been made available to all members of the committee and although I will not go through them in detail now, I urge Senators and Deputies to give them full consideration.

The central recommendations from all of these groups, with vast experience working in this area, include a presumption that everybody should have the capability to make decisions. The main focus of the new law must be to support people in making their own decisions. Given Ireland’s commitment to enacting capacity legislation in order to ratify the convention, this Bill must be truly reflective of its ethos and approach. It is a crucial moment in law reform in Ireland and, quite simply, there is an opportunity for Ireland to really lead in this area. Importantly for those considering the issues today, the solutions exist in our principles and the submissions of other stakeholders.

What does the convention require from Irish legislators? As we have already heard, the convention outlines a social model of disability. It does not focus on the individual but on the physical and social environment. It recognises that society must adapt to allow persons with disabilities to participate in society and enjoy their rights. The convention legitimises what all of us already know; that our archaic method of the status approach towards assessing capacity is vastly outdated and in breach of international human rights law. It labels people, in some cases leading to decisions being taken without their consultation. In the participatory research we conducted, one participant we spoke to stated:

This Bill must signify a change in approach, recognising people’s rights to make their own decisions and moving away from the paternalistic approach of best interests and guardianship. It must support people in realising their rights and making their own decisions about their lives, and it must give clarity and protection when somebody cannot make a decision themselves. The approach must be accessible, individualised and appropriate to each individual.

Article 12 of the convention is concerned with legal recognition of persons with disabilities before the law and specifically refers to legal capacity. There is no reference to mental capacity in the convention. In our view the question is no longer whether a person has the mental capacity to make a decision but rather what types of support are required for the person to exercise his or her legal capacity. In order to be consistent with the Convention on the Rights of Persons with Disabilities, CRPD, we strongly recommend that the title of the Bill be amended to the legal capacity Bill and focus on decision-making ability.

Two very recent cases in the European Court of Human Rights held that states are “obliged to note the growing importance which international instruments for the protection of people with mental disorders are now attaching to granting them as much legal autonomy as possible”. The scheme touches on the concept of supported decision making under the guiding principles and best interest heads, and its main focus is on systems of substitute decision making, which does not adequately adopt the changes required by Article 12 of the CRPD. We remind Senators and Deputies that we have been told that one of the primary reasons for bringing forward legislation is for Ireland to ratify that convention.

Supported decision making is very important for somebody to make his or her own decisions. Supported decision making involves a variety of processes that allow decisions to be directed by a person’s own will and preferences. Some of the supports compliant with Article 12 include advocacy, representation agreements and advanced planning directives. A range of supports should be considered. Crucially, Article 12 places an obligation on state parties to the convention to provide these supports. That said, and recognising the ongoing process in considering obligations for the State, it is important for the committee to note that supported decision making is not resource-intensive, as can be seen with representation agreements in British Columbia. It can sometimes mean relying on our own circles of support.

The UN committee on the rights of persons with disabilities in its concluding observations on Tunisia and Spain’s report and compliance with the convention stated that both jurisdictions needed to replace their guardianship laws with supported decision making. It is increasingly clear that in order to comply with the convention, Ireland’s legal capacity law must hinge upon the provision of supported decision making. We strongly recommend that the Bill provides for a statutory framework for supported decision making.

There will of course be times when a person’s will and preferences cannot be known and making a decision on someone’s behalf should only be used as a last resort when all supports have been exhausted and should be relied upon only in regard to a specific issue and for the length of time suitable to that purpose. The decision maker must make the utmost effort to communicate with the person and determine their will and preferences.

Chairman: Information on David Stanton  Zoom on David Stanton  There are many groups here and there is much time pressure on us. Could Mr. O’Gorman sum up?

Mr. Colm O’Gorman:  Safeguards should be put in place to ensure that the human rights of individuals using supported or facilitated decision making are respected. An independent decision-making body, which includes a variety of disciplines, is essential. A courts-based system is not suitable as a flexible, accessible and individualised response. This body must have the human rights of individuals at its core.

I will ask my colleague, Ms Karol Balfe, to touch on the need of the legislation to interplay with the Mental Health Act 2001.

Ms Karol Balfe:  As Deputies and Senators would be aware, the Department of Health is currently reviewing the Mental Health Act 2001. In our view it is essential that these two pieces of legislation be amended to reflect these provisions. As Mr. O’Gorman has pointed out, with the Mental Health Act specifically the will and preferences of a person rather than best interest principles should be the primary consideration. In our view, head 1G of the capacity Bill, which lists the guiding principle as “taking account of the person’s past and present wishes where ascertainable”, would be core to bringing Ireland into compliance with the convention. This should replace head 3 on the best interest principle as the primary consideration. It should follow through for all forms of decision making so that will and preferences would be the primary consideration.

As Mr. O’Gorman has pointed out, we strongly advocate legal recognition of advance care directives and the right to an advocate. In particular, this would maximise the autonomy of people with mental health problems, and this takes in Part 4 of the Mental Health Act, dealing with consent to treatment. That should be amended in light of the capacity Bill.

The Bill should include oversight mechanisms for treatment and medication decisions. Head 14 of the capacity Bill is not currently sufficient to deal with safeguards and protections when, in a position of last resort, when somebody is being given medication or treatment without will and preferences being known. Last week’s committee hearings highlighted significant concern about the lack of protection for the so-called incapacitated but compliant patients. It is estimated that there are between 5,000 and 6,000 such people, and we echo the idea that there is a shocking lack of safeguards and protections for those people. This Bill and the Mental Health Act must be amended to give better protection to such people, both in the protections around treatment and arbitrary deprivation of liberty.

The recovery approach put forward by A Vision for Change is very much in line with the change the convention requires. It would be nonsense if this process did not fit with what the Mental Health Act is doing and with what A Vision for Change is trying to achieve. There is an obligation for all pieces of mental health services, policy and legislation to interplay. On the general operation of the Act, it is very important that the current wards of court would have their status reviewed as quickly as possible, and it would be unacceptable to have two dual systems, with one having less protection. It is important to point out that where a person is likely to regain capacity, a decision should be postponed until that can occur. Every attempt should be made to augment a person’s capacity before any decision is taken on that person’s behalf.

Our final recommendation is a need for a periodic review for this legislation. The committee on the Convention of the Rights of Persons with Disabilities will be giving further meaning to the article and it will spell that out through general comments. We urge the committee to build in a review mechanism in the legislation.

Deputy Dara Calleary: Information on Dara Calleary  Zoom on Dara Calleary  I welcome the group from Amnesty International. I will focus on the interplay with the Mental Health Act as there is no sense in us doing our work if we ignore it. Will the witnesses discuss some of the basic requirements relating to advance directives? When is a person in a position to file an advance directive or is there a limit on the ability to do so? How can one make an advance directive robust enough to avoid it being misinterpreted by family or others when a person does not have the capacity to change it? How can a person make it robust enough to avoid challenge from family or others when that person may not have the capacity to resist that challenge?

Ms Karol Balfe:  First, if we are shifting our focus towards will and preference, an advance directive based on the person’s will and preference should be the primary consideration. Second, an advance care directive is a very important mechanism of support, but it cannot be the only one. Many cases of early mental health psychosis, for example, will happen before anybody starts thinking about the process of advance care planning so a range of supports would be necessary. The other point is that advance care directives in legislation alone will not suffice; there must be awareness-raising education from users and practitioners about how they would work. It is also necessary to ensure they are robust enough that they really respect the will and preferences of the person.

Deputy Dara Calleary: Information on Dara Calleary  Zoom on Dara Calleary  I am concerned. This arose last week in the context of Alzheimer's. We could recommend a series of provisions on advance care directives but there might be other aspects of legislation in other Departments or other areas that might undermine them and open them to challenge by people who might not agree with the directive, for whatever reason. Are there other parts of legislation that would undermine the witness’s theory on advance care of which we should be aware?

Mr. Colm O’Gorman:  One of the issues is that in any area where decisions are being made in this way, particularly in areas where property might be involved, we can envisage these types of challenge. We are already seeing them. It is not that an advance care directive will resolve the possibility of other parties taking challenges to decisions that are made, for example, with regard to property for somebody who now finds themselves in a situation where their capacity is somewhat diminished. However, it is part of a suite of supports that can inform better decision making. If something then ended up being subject to a legal challenge, the support framework that existed and evidenced the rationale behind the decision would be able to argue clearly that this was the strong preference of the individual, supported by other elements of will and preference that could come from what was known about the individual. It supports that decision and makes it more robust. It is a suite of supports that really strengthens the ability of decision making in the interests of the individual and which should be able to demonstrate that it is consistent with their desire, practice and will and preferences. However, it will not prevent possible challenges because they already exist.

Ms Karol Balfe:  Part 4 of the Mental Health Act dealing with consent to treatment would have to be amended to recognise advance care directives in a mental health setting.

Mr. Charles O’Mahony:  There is precedent in other jurisdictions for advance care directives on mental health. Germany, for example, has a very good system of advance care directive. At present, in fact, there is a big public awareness campaign to make people with mental health problems aware of these directives and how to use them. The Law Reform Commission published a report on advance care directives. While it does not actually recommend advance care directives for mental health, there is a great deal of detail in it on how one can ensure that the advance care directive is respected.

Deputy Dara Calleary: Information on Dara Calleary  Zoom on Dara Calleary  The witnesses are seeking oversight mechanisms for treatment and medication decisions. They referred to medication and said that mental health medication might impair somebody’s ability to make a decision. What type of mechanisms do they have in mind?

Ms Karol Balfe:  We would recommend that a specialist board be established. A courts-based system is completely inappropriate for these types of decision. As regards protections in the context of medication, a number of obligations could be placed on practitioners, such as a need to demonstrate that the treatment is necessary, that it is the least restrictive and intrusive and a need to show that any advance care directive or supported decision-making mechanism does not contradict with this. We have made a number of recommendations on the detail of that in our submission.

Deputy Dara Calleary: Information on Dara Calleary  Zoom on Dara Calleary  In the area of supported decision making, we might fall into a trap of restricting our thoughts on supported decision making where there is a structure in place, for example, a family or friends. What about a situation where that structure is not in place, that is, where there is no family or trustworthy friends who have the capacity to make that decision? Would the witnesses advocate putting an independent structure in place?

Ms Karol Balfe:  Other jurisdictions have appointed advocates on a statutory basis to help people who do not have that support network. We can learn a great deal from the disability community about how people with apparently no support structures have been reintegrated back into community life. It is not that it has not been done in Ireland but there is an obligation on the State to give some type of supports to allow for that.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  I thank the witnesses for their excellent presentations. My question is for the Commissioner’s representative. He referred to Article 12, and the Amnesty International Ireland presentation made a clear recommendation that the current Bill should replace the best interests test in heading No. 3 with a will and preference test that is more clearly designed to promote supported decision making rather than substitute decision making. I am not sure if he can offer a view on this Bill but can he say whether he agrees with that or whether a Bill which still refers to best interests as the key principle for decision making would conform with Article 12? I do not know if he can say it specifically but if not, perhaps he would address the latter point generally. It is a key point that arose in last week’s hearings.

Mr. Lauri Sivonen:  I would not know all the details regarding the Irish legislation or any proposed legislation. However, from a broad perspective, the best interests model is the model of the past. It demonstrates the paternalistic view of trying to determine what the best interests of a person are, even of a person who can perfectly well decide for himself or herself what his or her best interests are. Therefore, Article 12 of the UN Convention starts from the assumption that the person has full legal capacity, and if that person needs and wants help to exercise that legal capacity, it should be provided for the person. The active element is the person concerned. If the starting point of the law would still be best interests, that would be including the old paradigm and saying we are still making decisions for persons, although the philosophy and the obligations of the UN Convention are clear that the starting point is that the person has capacity.

Senator Fidelma Healy Eames: Information on Fidelma Healy Eames  Zoom on Fidelma Healy Eames  I welcome the witnesses. Colm O’Gorman quoted a person who described how they felt when they were being spoken about in a family as if they were an object. I took it to mean that Mr. O’Gorman was denigrating the idea of being labelled. Would he like the new legislation to get rid of labels, that is, labels that would identify a person’s needs, such as if they are in the autistic spectrum, have mild learning difficulty, dyslexia and so forth? Resources go along with that. How would he envisage a better model in that area?

Mr. Colm O’Gorman:  The label we are most concerned with is the label of incapacity. We are anxious to have a presumption that every person has legal capacity to make a decision, rather than start from a premise that they are incapacitated. That is what objectifies them. That is the spirit of what the person who participated in our research was saying. It was the presumption that they were an object and did not possess the simple human capacity to make a decision which they felt objectified them. That is the concern. I do not think that diagnostic tools that might be applied in other contexts are a problem in what we are discussing here. It is the label of being incapable by the nature of some perceived disability that is the problem.

Senator Martin Conway: Information on Martin Conway  Zoom on Martin Conway  I thank the witnesses for their comprehensive presentations. I like the suggestion in Amnesty International’s submission regarding a periodic review because the legislation might look fine and workable but it could be different in practice. Some elements of it might not work well at all. What is the view of the Commissioner’s representative on periodic reviews? How has it worked in other countries? What is the mechanism for reviewing the Convention on the Rights of Persons with Disabilities? Is there a periodic review within that? What is his perspective on it?

Mr. Lauri Sivonen:  The UN Convention on the Rights of Persons with Disabilities includes various rights of persons with disabilities and various monitoring processes which are partly at international level. The treaty body concerned meets in Geneva. The convention assumes there are several bodies at national level to monitor the implementation of the convention, as well as independent monitoring bodies.

I am not aware, as I have not studied the situation in other European Council of Europe member states, how other countries review their legal capacity legislation on a periodic basis. We are simply underlining the current legal reforms in many member states and how they have embedded procedures in the new legislation. I do not have any new data to give members on the outcomes of the periodic review of the legislation. The current practice is that laws are up for review after certain time periods in almost all areas of activity. The review process follows the parliamentary procedures which are in force in each member state.

Chairman: Information on David Stanton  Zoom on David Stanton  Mr. Sivonen referred to a paradigm shift in his presentation. We are changing our laws, which date from 1871. How important is it to bring civil society up to date on these changes? It is one thing for the Government to enact laws, but will Mr. Sivonen comment on this mind change in society?

Mr. Lauri Sivonen:  I think we can also link this to the emphasis of the UN Convention on the personal will and preferences of the persons concerned. It is in a more collective sense that we also have civil society and the people representing persons with disabilities have to be involved in the process of reforming laws and providing this report. That is the collective aspect of the Bill on the question of preferences. However, it happens both at the individual and also at a collective level because human rights are not simply enjoyed by people as individuals but in contact with people together. We must include both individual and community aspects.

Chairman: Information on David Stanton  Zoom on David Stanton  I invite people to remain after the presentations have been made, because we have organised for photographs to be taken. I understand that some people may have to catch flights or go on to other business appointments, so please feel free to leave, if that is what one must do, once the presentation is complete.

I now invite the representative from the Law Reform Commission, Ms Patricia T. Rickard-Clarke of the Law Reform Commission and Mr. Ray Byrne, director, to make a short presentation.

Ms Patricia T. Rickard-Clarke: Information on    Zoom on   The Law Reform Commission wishes to thank the committee for the invitation to speak to it. The current system for dealing with people who lack capacity is regulated primarily by the Lunacy Regulation (Ireland) Act 1871. The 1871 Act suffers from a number of fundamental flaws. The language used in the 1871 Act has clearly been unacceptable for a long time; wardship involves taking away all decision-making control from an individual, there is no nuanced, sliding scale, approach. For example, you may be a 28 year old Special Olympics athlete who has represented Ireland but, if you are awarded compensation arising from a road traffic accident, the award might only be made once you have been declared under the 1871 Act, in open court, to be a “person of unsound mind”, as was decided in the Bray Circuit Court in March 2011. For this and other procedural reasons the wardship system, which is a plenary guardianship system, may be in violation of constitutional requirements and international human rights law. The committee should also be aware that the Marriage of Lunatics Act 1811 is still on the Statute Book.

The commission, as the committee is aware, has since 2003 completed a number of projects dealing with issues of mental capacity and published a number of papers. The commission recommended that the legislation should contain guiding principles, which are reflected in head 1 of the 2008 scheme of the legislation and that these should be specific enough to indicate the purpose of the legislation, namely, no intervention unless necessary; least restrictive intervention; past and present wishes to be taken into account - this would include beliefs and values - where people are unable to articulate their wishes; the views of other relevant persons to be taken into account; and that due regard shall be given to the need to respect the right of the person to dignity, bodily integrity and autonomy. These guiding principles would be applicable to all who deal with people whose decision-making capacity is at issue.

The legislation must promote capacity by having an emphasis which is enabling rather than restrictive in nature. There should be a statutory presumption of capacity. There is already a presumption in common law, but this is not recognised generally by the population, that all persons aged 18 years and over are presumed to have capacity to make any decision that has legal consequences. A person has a right to make decisions without any support or assistance and is entitled to reject it, even if offered, that is, he or she has the right to be foolish and the right to be wrong. On the other hand, mental capacity legislation should facilitate informal supports where such supports, in other words informal decision making and general authority, can assist a person to make decisions independently. The legislation needs to provide for specific safeguards in this respect.

Article 12 has been quoted in detail but Article 12 also provides that all measures that relate to the exercise of legal capacity must provide for appropriate and adequate safeguards. Mental capacity legislation should be based on a functional approach to capacity whereby an adult’s capacity is assessed in regard to the particular decision to be made, at the time it is to be made. The status approach associated with the current wardship system must be rejected, which involves a test of capacity that is “all-or-nothing”; and virtually all usual civil rights are taken away as a result, not necessarily a consequence of all wardship systems but certainly very much part of our system in this jurisdiction.

Legislation should include strong provisions on advance decision making, including advance care directives. The legislation should be facilitative in nature and be seen in the wider context of a process of health care planning by an individual, whether in the general health care setting, mental health care planning or in the context of hospice care. An advance care directive should be defined as the expression of instructions or wishes by a person of 18 years with capacity and should also apply to advance care directives that involve refusal of treatment subject to certain conditions specified in the legislation. In other words, a person cannot refuse basic care but can refuse artificial life sustaining treatment.

The current remit of enduring powers of attorney, which is a plenary system, which is confined to the authority to make property, financial and business affairs and personal care decisions, should be extended to the right of the donor to make health care decisions. This is included in the scheme of the 2008 Bill as recommended by the Law Reform Commission. The formal registration of an enduring power of attorney should be within the responsibility of the proposed guardianship board, as proposed by the commission. The public guardian should have a supervisory function with regard to enduring powers of attorney. The legislation should also provide for the formalities concerning the revocation of an enduring power of attorney where the donor has the capacity to do so. The sliding scale approach recommended by the commission to the role and function of a personal guardian, is based on the least intervention test, and the presumption of capacity. Even where a personal guardian is appointed, the presumption should be that the role is limited to specific tasks; ‘general’ guardianship would only be appropriate as a ‘last resort’ where all other options have been tried and-or are clearly established not to be appropriate. International best practice is for a multidisciplinary non-court body because the assessment of capacity to make decisions requires such a multidisciplinary approach, which is more flexible and accessible and less costly and can take individual circumstances into account.

An office of public guardian should be established. We need a central authority. The legislation must recognise the very important functions that must be assigned to this office. Apart from a multidisciplinary approach, it should have a wide-ranging advice, support and educational role for vulnerable people and their families. The office of public guardian, as well as being responsible for the supervision of personal guardians and attorneys, must also support them in their role and ensure that adequate risk assessment is being carried out to ensure that ‘fit and proper’ people are appointed to support a person to make decisions. The office of public guardian should have a wide ranging, standard-setting and educational role to raise awareness of capacity issues and to ensure appropriate codes of practice are formulated for a range of people dealing with at-risk or vulnerable adults, including health care professionals, legal professionals and financial institutions.

Very importantly, the office of public guardian should be the contact point for any person who has a concern or suspicion about the abuse of an at-risk or vulnerable adult. The public guardian should have the power to investigate any matter of concern and should have the power to request the guardianship board to revoke or amend an enduring power of attorney or a guardianship order. The commission acknowledges again the provision in the 2008 scheme of the Bill for the office of public guardian. Let me emphasise that the legislation is urgent. Much work has been done on the ground, even with the current archaic system but it lacks an overall legislative framework, which is urgent. I will ask Mr. Byrne to address that point.

Mr. Ray Byrne:  On some of the figures referred to in previous presentations, it may be of some help to remind ourselves that there are 3 million adults in Ireland. Capacity legislation would at least indicate that these 3 million adults are presumed to have capacity. It is very important. The legislation would cover 3 million people. This would also include the groups on the ground which are engaged in self-advocacy and supported decision making. The Chairman referred to bringing society along. The groups that have made presentations previously to the committee have argued that society is ahead of the Legislature, the Oireachtas, in terms of self-advocacy groups which have been working in the system or, in a sense, outside the system.

Equally, we have had some shifts, perhaps not paradigm shifts. As the Health Research Board reported last year in the annual report of the national intellectual disability database committee, the number of people with intellectual disability living full-time in community group homes and at home has increased by 66% since 1996. Of those registered on the national intellectual disability database, 16,742 people are living at home with family members and support structures. A mental capacity or capacity Bill would reinforce those structures. We live in a community in which supports and ground-up initiatives are very important.

As Ms Rickard-Clarke also emphasised, among the adult population of 3 million there are groups such as those in late stage dementia for whom supported decision making may not be appropriate. As a last resort, a robust structure and system which does not lead to abuse is needed. Unfortunately, we are aware of financial and other forms of abuse of at-risk members of the community. According to the latest census figures, as many as 40,000 people may have dementia and it has been estimated that more than 140,000 people will have dementia in 29 years. The current wardship system can deal with 2,215 people. If one has a group of 140,000 people not too far in the future, a robust system must be in place based on self-advocacy and supported decision making. Perhaps a magic bullet will be found which prevents people with dementia reaching a position where they lack capacity in terms of decision making, if not in terms of being citizens. This is a large group of people.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  I thank the delegation for its helpful presentation. As others have noted today and last week, the Law Reform Commission’s work and reports in this area have already guided a good deal of the scheme of the Bill and have been helpful. Many of the commission’s recommendations were incorporated into the scheme, for instance, the statutory presumption of capacity in head 1, the functional definition, the public guardian and enduring powers of attorney. However, as others noted, changes have occurred in the short period since the Law Reform’s Commission’s comprehensive work was published in 2006. The convention gives a more updated model of capacity and what we are hearing is that this is not reflected in the scheme of the Bill, which dates from 2008. This theme has emerged from all the submissions.

I have a couple of specific questions about how we address this issue and ensure the scheme is updated to reflect current best practice. On the issue of the best interests test, how should we improve upon the current definition in head 3 which, as we heard, calls for substitute decision making rather than supported decision making? How should this matter be addressed in practice given the wide range of people who are likely to be covered, as Mr. Byrne noted?

Amnesty International, in its detailed submission, referred to the capacity Act of England and Wales under which one has independent capacity advocates who provide this type of support. How can one provide for supports in this country? Is the model adopted in England and Wales useful? Could we use the personal guardian model provided in the English Act?

Ms Patricia T. Rickard-Clarke:  On the issue of best interests, the Law Reform Commission, in its draft legislation in 2006, concentrated on the guiding principles and did not address best interests. At that stage, there was a debate on best interests and whether it was very much an objective test or subjective on the part of the person who was making the decision rather than based on the rights of the individual. This debate has been taking place internationally and nationally as to whether one should have a best interests test. Ontario has perfected its best interests test to have the complete balance, in other words, there is an obligation that any best interests decision being made must take into account the rights of the individual.

This returns us to the issue of terminology. Does one throw out the entire best interests test or try to perfect it? The scheme of the Bill produced the guiding principles and then best interests in head 3. This replicated, if one likes, the position in England. Head 1 on its own could be very much developed and upskilled - if I may put it that way - or one could have best interests taken into account in emphasising rights. The Senator is correct that the whole question of advocacy for older people, which has been introduced by the Health Service Executive for people in residential care, has been a huge support. However, advocacy does not address cases where people do not have capacity. The role of an advocate is terribly important as the first line because the advocate helps the person to make the decision rather than stepping into his or her shoes and making a decision on his or her behalf. The role of an advocate in the system is extremely important as the first level.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  Ms Rickard-Clarke emphasised the need for urgency. Having debated this matter for some years, we will take on board this need. A key recommendation Ms Rickard-Clarke and others have made is the need for the legislation to encompass provisions on advanced care directives. The Law Reform Commission has issued a much more recent report on this matter. Head 3 makes a brief reference to referring to any relevant written statement made by a person when he or she had capacity. Other than that, however, the heads are silent on advance care directives. Given the need for urgency, should the Bill be redrafted to include provisions on advance care directives or is a promise of further legislation sufficient? I am being practical on this issue. Is stand-alone legislation on advance care directives required or should these directives be encompassed in this Bill?

Ms Patricia T. Rickard-Clarke:  Ideally, advance care directives should be part of this legislation. However, the urgency of the basic framework is so important that the legislation should be introduced to ensure we do not wait for another 20 or 40 years for it. Advance care directives could then be addressed in a year’s time.

The heads of the Bill were published in 2008 before the Law Reform Commission completed its work on its 2009 report. One of our fundamental issues is that all of us here want to make an advance care directive on what will happen to us. We want to appoint somebody in whom we can have trust. The question of autonomy and the right to self-determination is terribly important. The questions earlier related to people where an issue arises when capacity is diminishing or there are issues with capacity. The Law Reform Commission emphasised forward planning. The Irish Hospice Foundation is doing this through its Think Ahead programme. Advance planning is also part of joint powers of attorney, advance care directives and the will. These three areas are what are described in other jurisdictions as the trinity of advance planning. This is very important.

In cases where capacity is at issue or is beginning to diminish, it is important that the will of the individual is articulated. In our recommendations we articulated that time is an issue in terms of the older the advance care directive is, etc., but then certain legal presumptions are built in as to whether they will be valid or not as the case may be. That is very important.

A question was asked about a person not carrying out the wishes under an advance care directive. Legally, he or she must do it. Provided all the circumstances that are contained in the directive prevail at the time, it is the individual’s right that the directive be carried out.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  I thank the representatives for their clear answers. I have one very focused question. A theme in the Law Reform Commission recommendations and in a number of other recommendations is for a specialist guardianship board or tribunal to replace the court and have the High Court as the last resort. I am trying to be practical. Would it be appropriate to extend the remit of the Mental Health Commission or is a new body required for that particular area?

Ms Patricia T. Rickard-Clarke:  The remit and the purpose of the mental health legislation is quite different from the purpose of capacity legislation. However, the commission would endorse what Amnesty has said about the need for that interface between the Mental Health Act and the mental capacity Act - that is the big gap in the mental health legislation. If a mental health tribunal is dealing with those issues and the capacity of a person is in question, that expertise should be on the mental health tribunal. For the vast majority of the people we are talking about, the issue is not mental health but one of mental capacity, and in terms of older people it is a different issue. The model of the mental health tribunal should be replicated because it gives very good results.

Deputy Dara Calleary: Information on Dara Calleary  Zoom on Dara Calleary  On the issue of advance care directives we talked about bringing society with us, and we will have to bring society a long way in respect of what it may involve in terms of medical care. It is an issue to which the committee might return.

Senator Fidelma Healy Eames: Information on Fidelma Healy Eames  Zoom on Fidelma Healy Eames  The representatives will be aware the laws are archaic.

Chairman: Information on David Stanton  Zoom on David Stanton  Does the Senator have a question for the representatives?

Senator Fidelma Healy Eames: Information on Fidelma Healy Eames  Zoom on Fidelma Healy Eames  I had a recent experience with Rehab in Galway where persons with intellectual disabilities were laid off.

Chairman: Information on David Stanton  Zoom on David Stanton  Sorry, Senator, we must focus on the legislation and a brief question.

Senator Fidelma Healy Eames: Information on Fidelma Healy Eames  Zoom on Fidelma Healy Eames  My question is, with the new legislation, what would people see differently in their lives as opposed to the way they may have been handled heretofore? Obviously, it takes time and resources. What is the estimated cost of putting this type of supported decision making in place?

Ms Patricia T. Rickard-Clarke:  First, there will be a statutory presumption of capacity. If a person presents with Down’s syndrome, it is not automatically the case that he or she does not have capacity. It is automatically assumed he or she will have capacity. That is the common law but it is not in statutory format. Everybody dealing with persons with intellectual disability or whatever are to be trained but that does not entail huge resources. Education, training and a culture shift are important. It is important we all approach the matter on the basis that we are supporting the person who has the right to make the decision and when they do not have the capacity to make the decision. There is a need for a robust structure to be in place to deal with serious decisions, but for every day living a great deal can be done provided safeguards are in place.

International evidence would indicate that there is a debate regarding legal and mental capacity and all of those issues. If there is a support system as we have with families, which is wide open to abuse, there is a need for safeguards, risk assessment and checks and, therefore, robust education is needed.

Chairman: Information on David Stanton  Zoom on David Stanton  I call on the representatives from the Law Society of Ireland, Ms Therese Clarke and Ms Nora H. Lillis, to make a brief, five minute, opening statement.

Ms Nora H. Lillis:  The Law Society of Ireland wishes to thank the committee for the invitation to make a presentation. I am a member of the mental health and capacity taskforce in the Law Society and a solicitor in practice. I am accompanied by my colleague, Ms Therese Clarke, who is a member and secretary of the mental health and capacity taskforce.

The Law Society has made two submissions on the proposed mental capacity legislation - one in 2009 and one in 2011 - which are available to the committee. We wish to highlight briefly a number of issues referred to in those more detailed submissions. The Law Society wishes to emphasise the need for modern capacity legislation which is compliant with human rights law and based on a functional assessment of capacity.

We are fully supportive of the objectives of the legislation being set out in the guiding principles and that the legal presumption of capacity be set out in statutory form. Referring to some of the comments made already, we support what Ms Patricia T. Rickard-Clarke said in respect of the best interest point. The approach suggested was in terms of an up-skilling of the guiding principles being the focus to deal with the various points on the best interest issue and how matters have moved on since the commission report.

The Law Society is of the view that the mental capacity legislation should be the governing legislation where there is any determination to be made in respect of a person’s decision making capacity in the civil law context. Matters have moved on in certain other statutory forms. We have drawn attention to the Nursing Homes Support Scheme Act 2009, better known as fair deal, and the provisions on care representatives being appointed by the Circuit Court where a person has diminished capacity, and the HSE’s role in respect of patient private property accounts in certain instances which was put on a statutory form in the Health (Repayment Scheme) Act 2006 and various social welfare regulations. All of this legislation should be brought together and reviewed in the context of the capacity legislation being considered. This would also facilitate a supervisory role of the public guardian in respect of various aspects of an individual’s life.

As emphasised by everybody to date, we agree that the mental capacity legislation should provide a clear interface with mental health legislation to provide appropriate safeguards for a person who has a mental disorder or mental illness but lacks capacity. A point raised by Senator Bacik and taken up by Ms Patricia T. Rickard-Clarke from the Law Reform Commission is also emphasised by the Law Society. We would have a concern if the jurisdiction for assessing a person’s decision-making capacity was directed to the courts rather than to a specialist board or tribunal. A board or tribunal would have the ability to be flexible in approach in addition to having at its disposal a panel of assessors and people with experience of working with individuals who may lack or have issues in respect of their decision-making capacity.

In its submission the Law Society has indicated that a court room is not a suitable venue for a vulnerable person whose capacity is being assessed on a functional basis. The needs of a person, including a convenient location, whose capacity is being assessed is a very important consideration and a specialist board or tribunal can offer that flexibility, including sitting in any place, on any day or at any time, including, for example, in a nursing home. The Law Society has also recommended that formal rules of evidence need to be relaxed when issues of mental capacity are being assessed, balanced, of course, with legislative safeguards. A further point on the possible assigning of jurisdiction to the court is that because, inevitably, there will be ongoing reviews of many decisions, any review of a court may result in an increased cost. Given the cost, the families of patients whose capacity is in question may avoid the system. This is not easy access which Ireland must meet as part of our international obligations.

A number of points have been raised on advance care directives. Such directives provide for an individual to make decisions about their future health care which are to be referred to in the event of their future loss of capacity. We agree with the points made in respect of advance care directives to date.

Legislation was introduced in 1996 to provide for enduring powers of attorney. The Law Society is aware that over the years there has been a recognition that some practical difficulties arise for attorneys and also there is an absolute need for further regulation. The proposed mental capacity legislation is an opportunity to address these issues. The Law Society recommended that there should be options for attorneys to be appointed jointly for some specified matters or jointly and severally for other specified matters. The society also recommended that a clear and comprehensive explanatory memorandum should be provided for attorneys, many of whom come to the role with little understanding of it and no familiarity with the duties involved.

On the other hand, many attorneys are family members. In such family situations, a conflict of interests may arise when the attorney’s personal interests conflicts with the interests of the donor. Increasingly we have seen attorneys placed in very difficult positions, where other family members put pressure on them in different ways. We have made a recommendation that an attorney should have recourse to a public guardian for advice and that where the attorney acts in accordance with that advice, the attorney should be deemed to have acted appropriately.

The Law Society recommended that a new office of public trustee be established to provide financial management services to people who, while having capacity, are vulnerable and clearly in need of that service. Such a service could be funded by the charging of management fees for the service for those who can afford to pay.

The Law Society recommended that the public guardian should have power to investigate any complaint or allegation that an adult with diminished or limited decision-making capacity is being neglected, exploited or abused or has inappropriate or inadequate decision-making arrangements in place.

The society also recommended that protection be given to a person for reporting information where there is a reasonable suspicion that abuse is being perpetrated on a vulnerable adult and that such protection should not be limited to a person who is a whistleblower in an employment context, or where a crime has in fact been committed, as provided for in proposed legislation.

I would like my colleague Ms Therese Clarke to make a number of comments following the issues I have raised in this submission.

Ms Therese Clarke:  I am focusing on the importance of the role of the public guardian. We hope that he or she would have a key role on the issue of abuse. On some of these issues, as Deputy Calleary said, the population is ahead of the legislation. A huge amount has been done on abuse by the HSE and by the National Centre for the Protection of Older People in UCD on raising the issue of abuse, be it financial, physical or otherwise. UCD carried out a survey which reported that financial abuse was one of the most reported abuses. Solicitors are particularly well placed to notice this, working at the centre of transactions and the movement of money where they see pressure being applied.

There currently is nowhere to go with a complaint. If families receive certain advice that certain things can be done, they can simply move to another solicitor and stage manage the issue in their interests, whereas if there was a public guardian with the role of investigating complaints, then we could have someone to whom lawyers, HSE officers and others could turn. That is very important.

The Law Society itself has done much work in raising this issue with guidance for solicitors in its practice seminars and so on. The abuse issue in the survey carried out by UCD showed that it is totally under-reported because there is nowhere to report. This was a survey of people aged over 65 and many of them might have diminishing capacity, and they stated that the abuse had a serious effect on them but they still did not have an opportunity to report it elsewhere.

Deputy Jonathan O’Brien: Information on Jonathan O'Brien  Zoom on Jonathan O'Brien  I would like to focus on the public trustee office. I know that the society’s recommendations refer to the establishment of such an office to provide financial management services to people who, while having capacity, are still vulnerable. What is the international practice on this? Are there examples elsewhere of how this works?

Ms Lillis stated the cost could be obtained through charging management fees. How many people could access this office? Will it be done by referral or will people attend the office through their own decision? Can the witnesses provide more explanation on this?

Ms Nora H. Lillis:  An example that I would come across in Ireland is the patient private property accounts, where the HSE manages funds on behalf of patients in nursing homes. That had been ongoing for a number of years on an ad hoc basis, but as a result of the nursing home repayments scheme, there was a necessity to put it on a statutory basis. The HSE has done an excellent job in the management of funds within those accounts. I can make available to the Deputy detailed guidelines that the HSE has prepared and which deal with capacity issues interacting with individuals, so that their wishes on the use of those funds are respected. Anybody I dealt with on this issue feels that the funds are well invested, well managed and always available to the individual. The most important thing is that the individual patient gets ready access to those funds so they can be used for whatever purpose the individual wants.

The commission witnesses might want to add their own examples in an international context.

Ms Patricia T. Rickard-Clarke:  There are public advocates, public trustees and public guardians in other jurisdictions that are larger than our own, such as New Zealand, Australia and Canada. We have no body in Ireland in respect of the public trustee. If there are older people with assets who are suffering diminishing capacity and do not have family or support mechanisms, to whom do they go? They go to private enterprise and, therefore, they are vulnerable consumers in a very vulnerable position. Other offices in other jurisdictions provide a service so that an older person can appoint a public trustee to manage his or her finances, look after investments and pay the fees. The fee is payable on the service, but it is protected because the office of the public trustee does not have a profit motive in mind and, therefore, the investments made are in the best interests of the person. The public trustee can be appointed as attorney for managing the financial and business affairs of the older person when he or she lacks capacity.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  Something that has come up with the Law Society presentation, but also with the other presentations, is the issue of the public guardian and the strengthening of its powers. Looking at the heads of the Bill on public guardians, the powers look relatively limited. What is the most important extra power or function that the public guardian should have?

Ms Nora H. Lillis:  I would be interested in what others have to say about this, but the point I made was that the public guardian should have that overreaching oversight role. Everything must be about the individual and legislation is developing in a very issue-based way. A certain person looks after an individual in respect of one issue and another institution is for another issue, but the public guardian would bring all of that together so that the whole thing could be focused on the individual.

Information should be made publicly available so that people clearly understand the issues. If one is not dealing regularly with vulnerable persons, one does not receive that learning that everybody has here, so it would be the role of the public guardian to make sure that publicly, everybody is aware of the very important issues that have been raised here today.

Ms Patricia T. Rickard-Clarke:  The scheme of the Bill limited the role from our recommendations. It is limited to health care provision, supervision of attorneys, personal guardians and carers. That is very limiting. I agree that we need that overarching central authority and a public guardian like that which exists in other jurisdictions. If a neighbour finds an elderly person who is confused and there is an issue in respect of capacity, the neighbour can refer the person to the public guardian.

The public guardian also has a very educational role in terms of those guidelines for attorneys and family members as well as all sorts of issues. It has that overarching educational and supervisory role, but is also the first port of call for complaints. It is not that the public guardian is going to carry out investigations or whatever, but the question is whether it has the authority to direct investigations. We have no overarching public authority or central authority at the moment. That is a big deficit.

Deputy Michael Creed: Information on Michael Creed  Zoom on Michael Creed  I thank all the representatives for their presentations, which were most enlightening. I am interested in the office of public guardian. Does Ms Rickard-Clarke think it desirable that the legislation be prescriptive in respect of the expertise or skill-set required to establish that office? I refer to legal or financial skills, for example.

Ms Patricia T. Rickard-Clarke:  No. It should be quite a small office, very efficiently and effectively run, with the opportunity to call in expertise as required. The expertise it will need from time to time will vary quite substantially over a range of issues and circumstances. It should not be an office packed with people who are there working all the time. In other words, the office of public guardian should be an independent office with independent functions, with the option of calling in or contracting for expertise as required. Inevitably, core skills will be required, and they should be available to the office. Other than that, there may be other issues.

Chairman: Information on David Stanton  Zoom on David Stanton  I have one brief comment on the HSE-controlled fund that was mentioned earlier. I have heard complaints from family members who find it hard to access that fund. Was a case not taken in this regard some time ago?

Ms Nora H. Lillis:  There have been some recent cases. That is the argument for bringing this into the mental capacity legislation. One section - I believe it is section 9 - of the repayment scheme Act was put in place to deal with an issue that arose urgently to do with the repayment scheme. That is the point we are making, namely, that it needs to be brought back in to a certain extent. The job being done by the HSE with regard to the accounts is excellent and the guidelines it has established are very good, but the experiences it has had over the last three years could be used in formulating this legislation to deal with some of its concerns over recent case law.

Deputy Jonathan O’Brien: Information on Jonathan O'Brien  Zoom on Jonathan O'Brien  Ms Rickard-Clarke spoke about the independence of the public guardian. Would she go as far as to say the public guardian should be independently appointed? It is stated in the heads of the Bill that the Minister will-----

Ms Patricia T. Rickard-Clarke:  That is what the commission recommended.

Chairman: Information on David Stanton  Zoom on David Stanton  We will now hear from the representatives of the Centre for Disability Law and Policy at NUI Galway. I welcome Professor Gerard Quinn, director of the centre, and Dr. Eilionóir Flynn, senior researcher. I ask Professor Quinn to make a focused five-minute presentation.

Professor Gerard Quinn:  I thank the Chairman for the high honour of addressing the committee. We have provided a lengthy submission and a much shorter written statement, but I do not propose to dwell on these, as they can be digested at leisure. It would be a much better use of the committee’s time if I were to speak more directly on the draft heads of the Bill, since the committee will likely have to frame its report in these terms. Before doing so, I remind the committee that the delay in enacting this legislation - and indeed the delay in ratifying the UN Convention on the Rights of Persons with Disabilities - has a lot to do with the need to ensure the Bill is in the closest possible alignment with the convention, especially Article 12 thereof. This caution is laudable, but the clear implication is that the only test for the heads of the Bill is its alignment with the convention and particularly the aforementioned article. It seems plain to me that three things must be achieved in the heads of the Bill: it must be consistent with the philosophy and spirit of Article 12 and indeed other parts of the convention; it must map effectively onto Irish law all the core requirements of Article 12; and, just as important, it must provide a stable platform for organic growth into the future. We do not want to be back here in five or ten years’ time. Of particular concern to me in that regard is whether an essentially positive philosophy of support can find a stable home in an essentially negative superstructure premised on a deficit approach and with guardianship as a form of protection. I will return to this later.

At the risk of getting sidetracked, let me dwell on the issue of protection in passing. I am not one of those who say that all protection is bad or all protective measures are necessarily tainted with outdated paternalism. My own view is that the self-evident need to protect some citizens with intellectual disabilities does not necessarily lead to stripping them of the right to make decisions for themselves. There are more effective ways of protecting people than removing their decision-making capacity. If protection is a concern, I would advise that we focus on it, especially on the development of adult protection programmes. We should not pursue it on the cheap by removing a key indicia of personhood, the right to make decisions for one’s self.

Let me return to the three key tests for the heads of the Bill, its philosophy, whether it maps the requirements of Article 12 onto Irish law, and whether it allows sufficient space for development and growth in the future. With regard to the philosophy of the Bill, many if not all of the previous witnesses have emphasised supports, and I add my voice to theirs. Much more importantly, in our submission and more directly in our written statement, we pointed to the views of authoritative bodies in the international legal order to the same effect. There has been a certain crystallisation of views on this in the last few years, certainly since 2006 and even since 2009. These bodies include the Office of the United Nations High Commissioner for Human Rights, the Council of Europe Commissioner for Human Rights, of which we are privileged to have a representative at the committee today, the inter-American treaty monitoring body, which handles the relevant disability convention in the Americas and, more relevant to Ireland, the UN Committee on the Rights of Persons with Disabilities. Ireland will account to this latter body when we ratify the convention. The committee has already emphasised that a lack of tangible steps away from guardianship and towards a support regime will attract negative criticism. I assume Ireland does not want to expose itself unnecessarily to such criticism or to international legal liability. I will move on since, in the interests of time, the committee members can read the opinions of these bodies for themselves.

I will make the following points with regard to the philosophy of Article 12 and whether or how the heads of the Bill accord with it. First, as Amnesty International pointed out previously, the title of the Bill is wrong. There should also be a wall of separation between mental capacity - really, mental capability - and legal capacity. In terms of legal capacity, one’s inherent right and virtue of personhood to both hold and exercise rights remains a constant. One’s mental capacity may vary, and indeed it does in all of us, but I suggest one’s mental capability bears no direct causal relationship with either one’s status as a person or one’s legal capacity. Even if one were tempted to link the two and therefore conflate them, this runs directly counter to modern clinical psychology on decision making, which, if anything, downplays the role of cognition as the key driving force in most of our decisions, whether big or small. Consistent with the philosophy of the convention, the title needs to be changed to refer simply to legal capacity. This is not a cosmetic change. Behind it should be a very clear wall of separation between mental capability and legal capacity.

Second, as currently drafted, head 1(a) allows for a removal of legal capacity in that it assumes legal capacity unless the contrary is established. Given that there are alternative protective mechanisms available, I suggest that this language must go. Third, head 1(f) is to the effect that due regard is to be had to the dignity, bodily integrity, autonomy, etc., of the person. Why bury this? Why not elevate it as a key cornerstone of the heads and, in doing so, remove the equivocation? The words “due regard” should be removed and the provision altered to specify that the dignity and autonomy of the person are to be respected at all times. Fourth, head 1(e) uses American civil rights language, to which I am generally naturally attracted, referring to least restrictive intrusions and so on. I very much respect the sentiment, but I feel this language is completely out of place. Flipped over, it concedes intrusions into legal capacity and regularises them by assuring us that no over-broad intrusions will be allowed. Since we should have legal capacity as a constant, there is no need for this language.

Fifth, the definition of capacity in head 2 needs to be changed. Unpacked, it is really a definition of mental capacity, not legal capacity. It builds on an inarticulate assumption that a lack of mental capacity automatically amounts to, or can be easily framed as, a lack of legal capacity. I say we should break that link. It may be that some statutory language on decision-making capability is needed, but only, I would advise, to build on a positive picture of the kinds of support required to enable people to exercise their legal capacity.

Like Amnesty Ireland and others, I am extremely wary of the term “best interest” in head 3. Decoded, the signal it sends is that others can make decisions so long as the decision can be rationalised with regard to some objective criterion of what is truly in a person’s best interest. I make bad decisions all the time. In fact, I probably made one or two this morning. In decisions that are not generally in my best interest, why do I enjoy the dignity of a wide margin of risk but not others?

What about the core requirements of Article 12? What is not in the heads and should be is important. Here we arrive at the key normative absence from the head. It is an effective treatment of the concept of the support. Some might say I am wrong and that head 1(c) provides that a person is not to be regarded as lacking capacity unless all practical steps have been taken to support him or her, with no success, yet I hold to my point. Head 1(c) does not, in so many words, set out either a philosophy or a right to support. Inasmuch as it broaches a positive support philosophy, it does so against the backdrop of a negative - the removal of capacity. Instinctively, I do not like this elliptical way of framing an idea in legislative language. There is a similarly elliptical provision in the English Act and the experience there is that it has not provided a stable foundation for the evolution of a support regime. The support idea is just an ingredient in a decision about capacity. I again say break that link and put support on its own platform and in its own Part in the heads of the Bill. That would valorise the positive philosophy.

Article 12 does not talk about supported decision-making, rather it talks in much deeper and broader terms about support to enable people to exercise their legal capacity. Let me lay to rest one popular misconception. To me, support does not mean a new programme, a new bureaucracy, a new army of service providers or a new means-tested entitlement scheme. It is the opposite. President Higgins recently spoke about the need to get as far away as possible from the language of needs, supports and services. I totally agree with him. Support in this instance really means reconnecting people to the web of social supports in their communities, which is precisely what eludes people with intellectual disabilities.

Ireland is a leader in moving people away from congregated settings. With the help of circles of support in the community, groups such as Genio and Áiseanna Tacaíochta are blazing a trail. The committee should build on the obvious and make the recommendation that the Minister do likewise. If legislation is needed, it should acknowledge this naturally occurring web of social supports and circles in the community, allow the expression of the will and preference of the person that bubble up through these circles of support to have legal standing and require third parties to respect them. This has been done in British Columbia and there is no reason we cannot do it.

Part 2 establishes an office of public guardian, essentially to hold the many personal guardians to account. It would be much better to create an office of public support, the core task of which should be to spell out what support means, how tensions - there will be many - can be managed and how safeguards can be achieved. Let me be frank. There is a standing danger that supports will oust the will and preference of the person concerned, even unintentionally. Very difficult lines will have to be drawn, but the difficultly in drawing these lines should not stop us innovating.

Head 20 makes absolutely no sense to me. It purports to exempt swathes of decision-making powers. I do not use the language of violation of international law lightly. I do so sparingly. However, if there is a clear violation of Article 12 in the heads, this is it. Article 12.2 talks about the right to enjoy legal capacity in all spheres of life. Would it not be much better to reverse the lexical ordering to require that a previously existing statute to the contrary should be interpreted in a way that brings it into maximum alignment with the heads? If it is not possible to interpret it thus, it should be deemed null and void. After all, the normal statutory construction allows a subsequent statute to take precedence over a previous one. I suggest this should be better reflected in the heads of the Bill.

With respect to the third test of the heads of the Bill, whether it will provide a stable platform into the future, I am concerned that a negative platform built on deficits, albeit with the very best intention of providing protection, although I say the issue of protection can be handled otherwise, is not a reliable support platform. I think it was Oliver Wendell Holmes who said the law was the external deposit of our community’s moral sensibility. This is a timely reminder that law reform is too important to be left to lawyers because it rests, ultimately, on the moral sensibilities of the community and because the world community has decisively moved to the support paradigm. As others have said, we again have a unique opportunity in Ireland to set standards in the field of disability. It is in this spirit that I commend the move to the support paradigm and hope my observations on the draft heads of the Bill put that in a concrete form.

Chairman: Information on David Stanton  Zoom on David Stanton  Thank you, Professor Quinn. Again, we have the idea of a major paradigm shift, which presents a huge challenge.

Mr. David McCarthy:  I thank the joint committee for inviting us to make presentations. We in Mad Pride Ireland involved ourselves in the discussion group facilitated by Amnesty Ireland in the past 12 months. The group included members covering areas such as Alzheimer’s disease, dementia, brain acquired injury, intellectual disability and mental health. During this process we believed it was vitally important to the human rights of the mad community that we submitted our own proposal, as we believed strongly that a compromise proposal that hoped to cover so many diverse areas would fail those we were hoping to help. The proposed capacity legislation is hugely important and will have wide ranging effects on the lives of those living with the normality of madness. That is why we consider it necessary to show that there are other options.

Emotional distress, without sounding too philosophical, is a disease of the soul, not the brain. Madness does not degenerate brain function in the same way as Alzheimer’s disease does and should not be dealt with in the same way. Capacity deals with our ability to make decisions. It does not deal with the merits or otherwise of those decisions. We argue that at no point does someone with emotional problems lose the capacity to make decisions. The starting point for many of the opinions submitted to the committee will be that capacity is lost, something that does not apply to mental health. If the legislation is drawn up from such a starting point that capacity is lost, the review of the Mental Health Act 2001 will be coloured and the basic human rights of the mad community will, again, be ignored. Madness may cause an individual to make poor decisions. Life itself can and does cause people to make poor decisions. What cannot be argued is that those with emotional problems have lost their decision-making capacity.

We need to develop a service that will help users to come to the best decisions for them, while respecting their decisions to disagree. This will require a sea change in thinking on the part of our policymakers, Members of the Oireachtas, and service providers. It will take courage of thought and conviction. The easy route is to take a compromise position, tick the box of compliance with the UN Convention on the Rights of Persons with Disabilities and move on. However, that would be a poor decision and lead me to ask members of the committee if they have the capacity to decide on the future treatment of those within the mental health services.

There are no easy roads in this area, nor should there be. We should all be cognisant of the busy roles into which the mental health services are heading. The financial crisis of recent years, growing unemployment and debt will only increase the need for these services. If they are not equipped and designed to deal with this, we are heading towards many tragedies. Therefore, I implore the members of the committee to see our argument for what it is. It is a plea for the human rights of some of the most vulnerable members of our society, a membership that is ever increasing.

Dr. Maurice Manning:  I thank the joint committee for giving me the opportunity to be here. It is always nice to be back in the Houses, even on the other side.

This is an extremely important Bill which is essential for the ratification of the UN Convention on the Rights of People with Disabilities. The Irish Human Rights Commission is broadly in support of most of the points made by the various groups in their very focused presentations. The committee has received our submission. Rather than get involved in repetition, I will ask my two colleagues to act as sweepers and focus on some of the key points made, as they see them.

Mr. Conleth Bradley:  I am cognisant of the points made by other contributors and will try not to cover the same areas. Everybody accepts the significance of the convention which is approximately five years old. However, there are important issues to be considered in terms of how it is implemented in Ireland. We have a dualist system and the portals of Articles 15 and 29 mean that mere ratification alone is not sufficient. The joint committee and the Oireachtas have a wonderful opportunity to give real effect to the convention, not simply to sign it but to incorporate it by, as Professor Quinn said, mapping its provisions into Irish law. If it is simply ratified but not incorporated into domestic law, it will have no effect. The opportunity must be taken.

I hope Professor Quinn will not be embarrassed by my drawing attention to a wonderful paper he wrote some years ago, entitled, "Personhood and Legal Capacity - Perspectives on the Paradigm Shift of Article 12 CRPD". It reflects much of what the committee is about. It advocates getting rid of the old vocabulary and thinking anew about personhood, capabilities, measures of capacity and so on. It is about getting rid of the old shackles and adopting a new approach. I wish the committee well in its work.

Mr. Des Hogan:  On the question of the presumption of capacity, we need to look forward in terms of what the Bill will do and what it will cover. The development of jurisprudence in the European Court of Human Rights is moving towards Article 12 but is not there yet. In the past six weeks we have had two judgments which are of particular relevance, in Stanev v. Bulgaria and a case in which we were involved, DD v. Lithuania. The judgments in these cases are sending the message that everybody has the right to go to court to have reviewed their declarations of incapacity. The European Court is moving in that direction and I predict that in the next three years Article 12 will be rolling out much more quickly. In that situation the State will be in legal peril unless it places presumption of capacity as a guiding principle in the legislation such that removal of capacity becomes the exception and where it does it arise, all the safeguards kick in in terms of access to court, supports and so on.

Reference was made to aligning this legislation with the Mental Health Act 2001. We have made submissions on this in the past with reference to such issues as voluntary versus involuntary, separation and amnesty, children and so on. The Criminal Law (Insanity) Act 2010 is under review. In other words, we have different definitions which must all be aligned. As Professor Quinn said, we must not have a situation where it will be necessary to return to this issue in five years time or find ourselves going before the UN committee and being on the defensive. We want to be able to say we have implemented best practice and show that is the case.

Deputy Anne Ferris: Information on Anne Ferris  Zoom on Anne Ferris  I thank the delegates for their contributions. I was struck by Professor Quinn’s observation in his submission that law reform was too important to be left wholly to the lawyers. We sometimes forget that these issues are not only about law but also about human beings. In that context, I was very pleased that the joint committee received submissions from groups such as the Alzheimer Society of Ireland, Age Action Ireland and Inclusion Ireland, as well as from ordinary people who considered it important enough to communicate their views. These are the submissions that make an impact on a personal level.

The Law Reform Commission has proposed the establishment of an office of public guardianship, while Professor Quinn’s submission referred to an office of personal decision-making. I presume these are one and the same.

Professor Gerard Quinn:  As part of a legislative review taking place in Labrador in Newfoundland it has been decided not to create an office of guardian but instead to establish an office of public support. Those may not be the exact names, but the idea is that it should not be an office to control, regulate, make inquiry and have oversight over the very limited telescopic process of stripping people of their decision-making capacity through guardianship; rather its purpose will be to assist in evolving standards in terms of how supports should be created in the community and in dealing with some of the tensions in regard to safeguards and so on. It is fundamentally a different philosophical beast entirely.

Ms Patricia T. Rickard-Clarke:  To clarify, that is precisely what the Law Reform Commission has proposed. We referred to it as an office of public guardian, but that is a question of terminology. If one is talking about guardianship in the plenary sense of all or nothing - transfer and all the rest of it - one is into the wards of court system. In jurisdictions in which guardianship legislation has been updated it has been very much about support. That is also what the commission is stating, with the supervision, safeguards and so on built in. We see that type of support as a key role of what we have referred to as an office of public guardian. It is not the old type of guardianship but a new model which looks at the needs of the person and his or her circumstances, emphasising capacity, least restrictive measures and so on. The commission is not proposing the plenary type of guardianship model currently in place; we are in favour of a much more developed type. What the office is called is another issue.

Dr. Eilionoir Flynn:  In the process of developing principles around this issue, with which we have been engaged with Amnesty Ireland and many other groups, we developed what is called a continuum of support approach which we propose would be preferable to the 2008 scheme, as proposed. This approach comprises three layers, the first of which is legal independence. We propose that legal independence should apply as a presumption in respect of all persons who have reached the age of majority. In other words, we assume the person can make his or her own decisions, in respect of which there may be a need for some informal support and reasonable accommodation in making these decisions. The second aspect is supported decision-making, whereby a circle of trusted individuals chosen by the person assists him or her in making a decision, with the resulting collective decision legally recognised as the will and preferences of the person.

Third, in situations of last resort, where neither of these options has led to a decision, we suggest, in accordance with best international practice, that a facilitative decision-making model be followed. This is a form of support rather than substitute decision-making, whereby a representative would be appointed to determine the person’s will and preference. Unlike any form of guardian who is there to determine the best interests of the person, a facilitator’s function is to establish the person’s will and preferences. The facilitator does so by speaking to the person and the people who know him or her well, taking into account any advance directive or previous decision the individual might have made. That type of facilitative approach is the direction in which the authorities are moving in Newfoundland, for example. We have an opportunity to do the same.

Chairman: Information on David Stanton  Zoom on David Stanton  I was taken with Professor Quinn’s point about a person’s best interests and how they could be misconstrued. The joint committee will certainly take it on board. What is the Irish Human Rights Commission’s view on the proposal that the Bill should be called the legal capacity Bill? The commission is making a recommendation that any decision regarding a person’s capacity could be subject to a right of appeal by an impartial and independent body, not necessarily a court. What type of body does Dr. Manning envisage?

Dr. Maurice Manning:  I ask my colleague, Mr. Hogan, to respond.

Mr. Des Hogan:  The commission agrees that calling the legislation the legal capacity Bill would better to align it with Article 12. On the second issue, it is a question of what happens when one starts from the presumption of capacity and then removes that capacity. The person would have to be able to challenge this under Article 6 of the European convention, if not before a court, then before a tribunal. The mental health tribunal would be the most obvious example of a body which would be able to review whether the taking away of capacity complied with the Article 6 requirements.

Mr. David McCarthy:  I wish to inform Deputy Anne Ferris that we have actually identified two existing bodies which would follow a process similar to that to which Professor Quinn referred. One is the Irish Human Rights Commission and the other is the Citizens Information Board which works very well within communities.

Professor Gerard Quinn:  On a point of information for Deputy Anne Ferris, I was present during most of the negotiations on the convention and the concept of best interests never arose. It just was not put on the table. It only arose in the context of a repetition - a cut and paste job - of the rights of the child as reflected in the convention. Everybody assumed that the notion of best interests had no place in the context of disability.

Deputy Anne Ferris: Information on Anne Ferris  Zoom on Anne Ferris  It is, of course, subject to so many interpretations. For example, Professor Quinn’s view on it could be different from mine.

Professor Gerard Quinn:  Yes. I understand the UK authorities, in the context of the legislation in place there, tried very hard to steer the interpretation of best interests in order that it would genuinely reflect the will and preferences of the person concerned.

Deputy Anne Ferris: Information on Anne Ferris  Zoom on Anne Ferris  Yes.

Professor Gerard Quinn:  Experience has shown, however, that they have not been able to manage to do this in practice.

Deputy Anne Ferris: Information on Anne Ferris  Zoom on Anne Ferris  That is the danger.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  I thank our guests for their excellent presentations. I wish to focus on the language used and move away from the concept of best interests to that of support. I am particularly interested in Professor Quinn’s point on support being placed on its own. Essentially, this would involve including a separate section in the Bill to provide for the continuum of support. How would this be best achieved in practice? Would it be done through the mechanism of creating a new independent advocacy service? Should we build on the models, described by the Law Society and developed by the HSE, already in place for persons in residential care? Will it be possible to build on what is already in place? Professor Quinn referred to building links with webs of social supports already in place. In practical terms, how would one make provision in legislation in that regard?

Professor Gerard Quinn:  It should be a separate part. Perhaps it will not be exfoliated as a fully separate part at this juncture if a decision is made to move ahead urgently. However, there should at least be anchorage points in the statute which would allow that philosophy to unfold in the coming years. My primary instinct is that we must build in what we in this country are actually very good at, namely, community development, which we have never directly connected with disability. We must also build in the evolving and excellent advocacy system for people with intellectual disabilities and other services in a joined-up way. That is somewhat secondary, however. The really important aspect is the need to begin acknowledging the naturally occurring social supports and valorising and encouraging people to put these together in order that it will be possible to build around a person the ingredients by which his or her will and preference will develop over time. This will require a great deal of learning and the introduction of standards and codes of practice. I would not, however, wish to over-bureaucratise it and create new armies of regulators because that would run completely contrary to the entire purpose of the Bill which is all about giving people a life; it is not about having a new layer of regulation overhanging their lives.

Ms Patricia T. Rickard-Clarke:  When discussing various sections of the Bill for different purposes, it is important to note that much of what has been said has centred on people with intellectual disabilities. The entire purpose is to allow these individuals to make decisions, particularly as some of them have the capacity to do so. In that context, there is the gradation of mild, moderate and severe. One is all the time trying to work with those to whom I refer. On the other hand, there is a huge cohort of people - older individuals - who are losing capacity. This must be borne in mind. There is a very loose support system of families and the National Centre for the Protection of Older People’s study indicates that the level of abuse perpetrated by adult family members is 80%. We must balance these two issues. We must also allow elderly people who have Alzheimer’s disease to be very involved in making their own decisions in so far as they have the capacity to do so. In the context of people with intellectual disabilities, it must be noted that one is trying to identify their capacity and enable them to live ordinary daily lives. Those at the other end of the spectrum are losing capacity, which we need to understand.

Mr. David McCarthy:  On best interests, a number of speakers referred to the alignment of this legislation with the Mental Health Act. If one took the ambiguity one could attribute to best interests, as a statement, and put them into practice in that Act as it stands, one would be giving power over an individual to two consenting clinical psychiatrists. If one goes on the premise that best interests are retained, that will open this up within the terms of the Mental Health Act, if we do not review it properly, to allow somebody else to have control. While we might tick the box in respect of capacity, we would be overriding it in the context of the Mental Health Act. This is something of which we must be aware.

Chairman: Information on David Stanton  Zoom on David Stanton  I thank everyone for attending. We managed to conclude our deliberations within the two hours allocated, which is excellent. I thank our guests for giving of their time and sharing their expertise. I invite them to continue to engage with the joint committee, the Department and the Minister. Obviously, this is extremely important legislation and the committee received over 70 submissions. More than 25 groups and individuals expressed an interest in coming before it to offer their views.

This has been an extremely informative and interesting meeting. Having listened to everyone - in the context of the previous set of hearings in which we engaged - it is obvious that we are concerned with a paradigm shift. The scheme of the Bill was drawn up in 2008 and it appears that there may be a need to tear it up and start again in order that we might get the philosophy right. We have the opportunity now to do this.

On guardianship, Ms Rickard-Clarke, Professor Quinn and Mr. Bradley referred to terminology, which is important. The word “guardianship” seems to indicate an onus towards protecting or guarding people. In addition, we are talking about removing capacity and taking away people’s freedom to make decisions and having others make such decisions for them. The fact that the term to which I refer has been used in itself gives rise to further questions.

This has been an extremely useful and fruitful exchange and I again thank our guests for coming.

The joint committee adjourned at 11.30 a.m. until 11.30 a.m. on Wednesday, 7 March 2012.

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