Good morning, ladies and gentlemen. I am delighted to welcome you today to our consultation symposium on the Assisted Decision-Making (Capacity) Bill and would like to thank you for taking the time to attend the event.
This is a highly complex piece of legislation which seeks to forge a new paradigm in terms of supporting people who have difficulties in exercising their decision-making ability. What we are trying to do is quite innovative. International legislation in this area is in its infancy. Where legislation is in place, in countries such as Canada and the UK, such legislation is now being reviewed and amended to take account of the latest thinking on this fast-evolving area. It reflects the challenge of developing legal solutions that are appropriate to diverse decision-making needs and yet effective within the existing legal system.
In this context, we have consulted widely so as to glean as much knowledge and good practice as possible to feed into the deliberative process. The consultative processes on this Bill have included public hearings by the Joint Committee on Justice, Defence and Equality in February 2012, a call for written submissions from that Committee in 2011 and a conference organised by this Department in 2009. Our point of departure is, of course, the UN Convention on the Rights of Persons with Disabilities.
From its adoption in 2006, the UN Convention on the Rights of Persons with Disabilities set out a blueprint as to what would be needed to promote equality in practice for people with disabilities. The impetus driving the Convention was well encapsulated in the statement of Don MacKay, Chairman of the committee that negotiated the treaty:
“What the Convention endeavours to do is to elaborate in detail the rights of persons with disabilities and set out a code of implementation”.
Article 12 of the Convention views equal recognition before the law as a fundamental right for people with disabilities. The Article imposes a number of obligations on States. These are:
· To reaffirm that people with disabilities have equal right to recognition before the law;
· To recognise that people with disabilities enjoy legal capacity on an equal basis with others in all aspects of life;
· To take appropriate steps to support people with disabilities to exercise their legal capacity;
· To provide appropriate safeguards against abuse.
The Assisted Decision-Making (Capacity) Bill has been framed to meet Ireland’s obligations under Article 12 of the Convention in line with the Government’s commitment in the Programme for Government to introduce this legislation. I believe that we have devised legislation that recognises the person’s legal capacity and equal right to recognition before the law and that creates a presumption of capacity. The Bill proposes a model of supported decision-making aimed at enabling all persons to exercise their decision-making capacity. It also deals extensively with safeguards against abuse.
The Bill is intended for three broad categories of people. These are people with disabilities, particularly intellectual disabilities, older people with degenerative cognitive conditions and people with mental health issues who may have fluctuating capacity. These categories of people will have very differing needs depending on their situation. Some will be living independently. Some will be with their families. Many, however, will be in residential care.
The philosophy of the Bill is to safeguard the person’s autonomy to the greatest extent possible. We have stressed the importance of the person’s ‘will and preferences’. The Bill moves away from the more paternalistic focus on best interests. This is because international good practice advises that it is better to enable a person to take his or her own decisions than to have a third party decide what is best.
We have sought to underpin the enabling philosophy of the Bill through guiding principles that must be taken into account for all actions foreseen under the legislation. These are the heart of the Bill reaching into every capillary of decisions taken under it. The first guiding principle is that we presume that a person has decision-making capacity unless it is proven that this is not the case. This presumption is a fundamental aspect of the Bill. The second guiding principle is that all practical steps have to be taken to support a person in terms of decision-making capacity before it can be decided that he or she lacks capacity. The third guiding principle is that a person cannot be deemed to lack decision-making capacity simply because there is a risk that he or she might make an unwise decision. The fourth guiding principle is that interventions should be made only if absolutely necessary. The fifth guiding principle is that no action should be taken if the matter is not urgent or if the person is likely to recover capacity shortly. The sixth guiding principle is that in situations where interventions become necessary, they must be done in a way that is least restrictive of a person’s rights and freedom of action. They must respect the person’s right to dignity, bodily integrity, privacy and autonomy.
The next guiding principle is that the person must be permitted, encouraged and facilitated, as far as possible, to participate in these decisions. The eighth guiding principle is that any intervention must give effect, as far as possible, to the person’s current will and preferences. The final guiding principle requires that those appointed to support a person must consult anyone involved in helping the person such as a family member, carer or healthcare worker. The aim is to build up a picture of the person’s preferences so that the action taken will tally with what the person would have wanted, had she or he been able to say so.
With this approach in mind, we have designed a continuum of decision-making support options to respond to a diversity of support needs. The assisted decision-making option is aimed at the person whose decision-making capacity is somewhat impaired but who, with the necessary information and explanation, could exercise decision-making capacity. This option allows the person to appoint a decision-making assistant under a decision-making assistance agreement which sets out the role and responsibilities of the decision-making assistant. Following enactment of the legislation, I will draw up Ministerial regulations to stipulate the content and form of these agreements so that there is clarity on both sides as to what is involved. Those appointed as decision-making assistants will be under the supervision of the Office of the Public Guardian, the office which is being established to manage this whole area. The person can remove the decision-making assistant at any time if unhappy with how the assistant is carrying out the duties. The person also retains full control over the actions of the decision-making assistant. The assistant can be appointed to support the person with personal welfare matters or financial issues or both.
As I have said, the philosophy of the Bill is to support a person to exercise his or her decision-making capacity to the greatest extent possible. There is a group of people who have some decision-making capacity but who are not able to take decisions even with the help of a decision-making assistant. With this group of people in mind, we have devised the co-decision-making option. This option will give the person the facility to appoint a trusted family member or friend as a co-decision-maker under a co-decision-making agreement which will then be confirmed by the Circuit Court. The co-decision-maker will be bound by the terms of the agreement and answerable to the Court. The OPG will also have the role of supervising the co-decision-maker in the performance of his or her duties.
Under this option, the person and the co-decision-maker will make decisions jointly. The person is free to decide the types of decisions in which the co-decision-maker will be involved. In all joint decisions, the co-decision-maker must take account of the person’s will and preferences and of the guiding principles. The co-decision-maker cannot override the person’s wishes. Specifically, the co-decision-maker cannot oppose the person’s decision if the decision is reasonable and if no harm would result from it, even if he or she thinks that it is an unwise decision.
We have specifically restricted this option to family members and friends as this is in line with what is considered good practice internationally. Owners and staff of residential institutions will not be permitted to act as co-decision-makers. This is to avoid a conflict of interest or the risk of the person being exploited or subject to influence.
The Bill restricts the option to be used only when necessary, i.e. when the person clearly lacks capacity to take decisions on his or her own. This safeguard is to ensure that a vulnerable person is not pressurised by a family member or friend into agreeing to this option when it is unnecessary. As a result, an application will have to be made to the Circuit Court to make the case for using this option and to indicate why the assisted decision-making option is not suitable. The test that the Court will use is a functional one which is issue-specific. This enables the Court to presume in favour of a person’s capacity to the greatest extent possible. The test of capacity will ask the following questions:
· Is the person unable to understand and retain the information relevant to
the decision?
· Is he or she able to use that information to make the decision?
· Is he or she able to communicate that decision whether by talking, writing, using sign language, assistive technology or any other means of communication?
The test is very careful. If the person is able to understand the information in simple language, then the person is deemed to have capacity to make the decision. Similarly, if the person is able to retain the information even for a short period, again the presumption is that the person has capacity to make the decision. The key thing that the Court must decide is whether or not the person understands the implications of making the decision or of not making it.
Unfortunately, there are situations in which a person is not able to take decisions even with the assistance of a decision making assistant or working with a co-decision maker. The Bill provides for a decision-making representative to be appointed by the Circuit Court but subject to strict safeguards. This is a last resort option to be used only when strictly necessary. The decision-making representative will be accountable to the Court and under the supervision of the OPG.
The Court will use the capacity test that I outlined above, when appointing a decision-making representative. However, this time the Court will have to decide that the person would lack capacity even if supports such as the assisted decision-making option or the co-decision-making option were offered. The Circuit Court will also have to decide the precise limits of a decision-making representative’s role. In some circumstances, for instance, it may decide that the decision-making representative can help in terms of personal welfare matters but that decisions on the person’s property and financial affairs should be taken by the OPG. A family member or friend can be appointed as a decision-making representative if suitable. However, if there is no suitable person available, the Court will ask the OPG to nominate two or more people from a panel that will be established by the OPG. The guiding principles will apply to the decision-making representative. He or she will still be obliged to take the person’s wishes into account, where at all possible. Again, in keeping with the move away from a status based approach to capacity, the decision-making representative would be appointed only in respect of those decisions or classes of decisions for which this is necessary.
The Bill introduces, as a safeguard, the requirement that the Court should review the capacity assessment every 12 months where there is a possibility that the person may recover capacity. We require a capacity review every three years in situations where there is no prospect of the person recovering capacity.
The Bill contains a provision which protects a person from civil and criminal liability where he or she takes a decision informally on behalf of another person. It responds to concerns among healthcare workers and carers as to the consequences of taking decisions on a person’s welfare. Such decisions can include providing life-sustaining treatment for a person or acting to prevent a serious deterioration in the person’s health. The Bill limits the protection against liability to informal decisions on personal welfare matters only. It does not extend to matters relating to a person’s property or financial affairs.
The Bill puts in place a comprehensive reform of our existing laws on capacity. Such reform is long overdue. As you are aware, the key legislation governing this area is outdated and archaic. As you know, the Bill will repeal the Marriage of Lunatics Act which renders marriages void where the person’s mental capacity is in question. Similarly, the Lunacy Regulation (Ireland) Act 1871 will cease to have effect. The terminology and concepts used are inappropriate to the modern understanding of mental health issues and capacity. What is more, the system that operates under the Act is intrusive, cumbersome and incapable of coping with the existing and projected demographic growth in the number of persons who lack decision-making capacity. I am pleased that we are developing a new system will be fundamentally different from what has gone before. The new system will enhance people’s rights to exercise their decision-making capacity and yet be sufficiently flexible to offer tailored approaches across the range of needs of people with impaired capacity. I hope also to integrate changes arising from the review of the Mental Health Act 2001 at Committee stage.
One of the most significant reforms proposed under this legislation is the phasing out of the existing regime of wardship. The wardship regime constitutes an all or nothing approach which is contrary to the requirements of the UN Convention. Rendering a person a ward of court requires a declaration by the High Court that the person lacks capacity. The wardship regime has been criticising for effectively supplanting the person’s decision-making capacity, taking away his or her right to make decisions, no matter how small. Of course, this is not to detract in any way from, or to fail to acknowledge, the excellent work done by the Office of the Wards of Court.
The provisions of the Bill will apply to existing wards of court. It proposes that all existing wards of court will be reviewed to determine whether or not they can be migrated to the new arrangements or discharged from wardship. The review process will be undertaken over a three year period. Once their cases are reviewed, some wards may be able to avail of the assisted decision-making support option. Some may move to the co-decision-making support option. The decision-making representative option will be more appropriate for others. In all cases, the support options available will be less intrusive than the current system. The people concerned will retain the possibility of making their own decisions, if at all feasible.
The Bill will facilitate advance planning through two important provisions, namely enduring powers of attorney and advance healthcare directives. Powers of attorney are a very effective means of enshrining the person’s wishes in a legally binding agreement. This option allows a person to plan for a situation of impaired capacity and to appoint someone that he or she trusts to take care of his or her affairs if that situation arises.
The provisions on enduring powers of attorney in the Assisted Decision-Making (Capacity) Bill largely re-state the provisions of the Powers of Attorney Act 1996. However, we have included a number of important safeguards in the legislation. Attorneys will be accountable to the court and to the Office of the Public Guardian as regards the performance of their duties. The Bill provides for the High Court to revoke powers of attorney for reasons such as if it is satisfied that fraud or undue pressure have been used to induce the donor, namely the person with impaired capacity, to create the power of attorney. The Bill also provides for the Office of the Public Guardian to object to the registration of a power of attorney if it believes the proposed attorney to be unsuitable or if it fears that fraud or undue pressure have been used in the creation of the power. The donor, of course, retains the power at any time to revise the power of attorney if he or she has the capacity to do so. The other innovation is that the enduring power of attorney provisions will be extended to healthcare decisions. That provision will enable a person to have greater certainty that his or her wishes in terms of treatment will be communicated to medical personnel.
Advance healthcare directives will also enable individuals to make their own choices as regards their healthcare. These will provide people with more scope in particular to influence how they wish to live the final stages of their lives. The Government agreed in March of this year that legislation should be drafted to enable people to draw up advance healthcare directives. The Department of Health is currently drafting proposals on advance healthcare directives with the aim of ensuring that they can be effective within the health system and have the necessary legal standing. These provisions will be integrated into the Assisted Decision-Making (Capacity) Bill at Committee stage.
How will the Bill be implemented? The Government has proposed that an Office of the Public Guardian (OPG) will be established in the Courts Service which will have the role of monitoring the way in which the various decision-making supports are implemented. Decision-making assistants, co-decision-makers and decision-making representatives will all be supervised by the OPG.
One of the major tasks of the OPG will be that of awareness-raising and of providing information to members of the public. The OPG will run an information help-desk for members of the public and will operate a website which will give guidance on the Act. The OPG will be charged with the task of developed tailored guidance for specific sectors and professions, such as for doctors and lawyers. The OPG will also be mandated to draw up binding codes of practices to apply to specific sectors, such as the healthcare sector. These codes of practice will be drawn up on the basis of consultation with relevant public bodies and stakeholders. I see the codes of practice as particularly important in devising detailed provisions that will promote the targeted organisational change needed to ensure that this Bill is a success, once enacted.
Promoting culture change in terms of capacity will require
action by organisations and individuals other than the OPG. Achieving the culture change necessary to implement the new legislation will be a big task. I am delighted that Eithne FitzGerald is here today to outline how the National Disability Authority and other agencies can support the implementation of the Act.
It is inevitable that those enabled under the legislation to enjoy greater autonomy as regards decision-making will also run a heightened risk of exploitation. Unfortunately, the unscrupulous can often prey on people with impaired capacity, particularly when the latter have assets and income. In my view, we need to have robust legal mechanisms to safeguard the rights of vulnerable people. The Bill provides for a court-based system which will allow the person to avail of the more intensive supported decision-making options, secure in the knowledge that these enjoy legal certainty and that any abuse of court orders will bring penalties. The Bill will allow for instances of exploitation to be prosecuted. A court-based system will also enable capacity-related disputes between interested parties to be adjudicated.
I am conscious that we need to ensure that a person can have greater access to justice. The Bill provides that the Circuit Court will handle most of the cases arising under this legislation, rather than the High Court which currently handles wardship-related matters. I believe that giving the Circuit Court jurisdiction over most of the matters arising under the Assisted Decision-Making (Capacity) Bill will facilitate less costly access to justice for vulnerable people. The proposal in the Bill to use the new specialist judges of the Circuit Court will enable us to have more judges available to deal with this area of work, thus ensuring fewer delays in accessing justice. Moreover, as implementation of the relevant support measures under this legislation will be a major area of these judges’ work, I anticipate that they will be able to develop the detailed expertise needed to adjudicate on what will often be highly complex cases.
The Bill will introduce two provisions aimed at making it easier for vulnerable adults to use the courts-based options foreseen in this legislation. The Bill will make it easier to access legal aid for capacity-related cases. Where a party to proceedings applies to the Legal Aid Board for legal aid, the Board will not apply a merits test, which means that the likelihood of success in proceedings and a favourable cost-benefit ratio will not be criteria influencing the granting of legal aid.
The Bill also provides that the court may decide that a suitable person or a ‘Court Friend’ should be provided to assist or act in court on behalf of a person lacking mental capacity. This is a role new to Irish law, but mirrored in UK mental capacity legislation and similar to a ‘McKenzie friend’ for self-representing litigants. The Court Friend will be able to support the person when capacity assessments are being determined or when the court is making decisions as regards the decision-making support options that are most appropriate. I envisage the Court Friend to have considerable potential to become a type of advocate for a person in his or her engagement with the court.
The Bill’s enactment is being undertaken in the context of ratification by Ireland of the UN Convention. It is the Government's intention to ratify the UN Convention as quickly as possible, taking into account the need to ensure that all necessary legislative and administrative requirements under the Convention are being met. Ireland does not become party to treaties until it is first in a position to comply with the obligations imposed by the treaty in question, including amending domestic law as necessary. The enactment of this legislation is just one of the core elements of the remaining work to be completed to enable ratification by the State of the Convention.
The ongoing implementation of our National Disability Strategy in many respects comprehends many of the provisions of the Convention. In addition, the Inter-Departmental Committee on the Convention monitors the remaining legislative and administrative actions required to enable ratification. The Committee has identified, as part of its work programme, issues to be considered by various Government Departments. At the Committee's request, the National Disability Authority, the lead statutory agency for the sector, is in the process of assisting it to assess the remaining requirements for ratification so as to ensure conclusively that all such issues will be addressed.
The Assisted Decision-Making (Capacity) Bill is one of a suite of reform initiatives that we are undertaking to promote the rights of individuals whose situations have sometimes not been adequately addressed and to facilitate greater access to justice for those who need it. These reforms are intended to promote the capacity of the judicial system to address increasingly complex and sensitive legal matters that involve individuals in situations of personal crisis.
The Programme for Government contains a commitment, for instance, to create a new Family Courts structure and I am determined to progress this in the lifetime of this Government. My intention is that a referendum to establish a new Family Court will be held in the course of 2014. Structurally, what I envisage is a two-tier court comprising of a lower Family Court with limited jurisdiction and a higher court with unlimited jurisdiction, both staffed with specialist judges.
This Bill is also part of a wider agenda of reform which I am undertaking in the area of equality and human rights. As many of you are aware, the merger of the Equality Authority and the Human Rights Commission is ongoing and will create a more coherent body to promote and protect more effectively the human and equality rights of all our people especially the most vulnerable in society.
One of the Irish Human Rights and Equality Commission’s many tasks will be to assist with the development of an Equality and Human Rights Duty for Public Bodies. It is intended that such a duty will go some way to mainstreaming human rights and equality in core policy areas. The positive duty, by enhancing the equality and human rights capacity of public sector organisations, should complement the work that will be needed by public sector organisations to review their processes and to ensure that they are in compliance with the Assisted Decision-Making (Capacity) Bill.
The Assisted Decision-Making (Capacity) Bill has the potential to effect a fundamental change in our attitudes towards decision-making capacity. For too long, we have operated in accordance with a paternalist paradigm in which decisions have been made on behalf of people rather than by them and in which decisions have been made in their ‘best interests’ rather than in accordance with the will and preferences. Up to now the wardship option in effect supplanted the decision making capacity of the ward; now we are moving to provide for legal mechanisms to assist people in their decisions rather than substitute for them. The legal change proposed in the Bill is significant. I am conscious, of course, that what is required of us by the UN Convention is itself significant. Amita Dhanda, the celebrated legal expert in this area, has said that the legal capacity article of the UN Convention is the ‘lodestar for the future’. The provisions on legal capacity force us to shake off the assumptions of the past and to forge a new world in which the person’s right to his or her own decisions is respected and safeguarded. The Assisted Decision-Making (Capacity) Bill is hurtling us from the presumptions of the 19th century into the ambitions of the 21st century. I believe that the Bill is not only a key stepping stone towards ratification of the UN Convention but also towards a radically changed understanding of people’s rights, abilities and possibilities.
Thank you very much.