Kathleen Lynch (Cork North Central, Labour) | Oireachtas source

I am very pleased to present the Assisted Decision-Making (Capacity) Bill 2013 to the Seanad. This is a ground-breaking Bill which fulfils the commitment in the programme for Government to introduce mental capacity legislation in line with the UN Convention on the Rights of Persons with Disabilities. The Government's aim has been to reform the law on mental capacity to ensure the greatest degree of autonomy for people with intellectual disabilities or suffering with mental illnesses.

The Bill proposes a fundamental reform of Ireland's laws on capacity. It is intended as a key element in enabling Ireland to ratify the UN Convention on the Rights of Persons with Disabilities. The philosophy underpinning the Bill is one of respect for the rights of those with capacity difficulties. The Bill focuses on enabling them to exercise their decision-making capacity to the greatest extent possible. The archaic laws which have governed this area for too long will be repealed. Accordingly, the Marriage of Lunatics Act 1811 and the Lunacy Regulation (Ireland) Act 1871 will be repealed. Wardship will be abolished for those over 18. We will consign to the past the system under which a person's decision-making capacity could be removed absolutely. Instead, the Bill will enable a person to take the decisions he or she is in a position to take, while putting supports in place to cover situations were the person is unable to take decisions in general or to take a particular type of decision.

We have sought to underpin the enabling philosophy of the Bill with guiding principles that must be taken into account for all actions foreseen under this legislation. These are the heart of the Bill and will reach into every decision taken under it. They require the actions taken under this legislation to reflect what the person would have wanted. They also require that any actions taken must intrude as little as possible onto the person's autonomy.

This is a very complex area. The people that it will benefit are vulnerable and their needs are diverse. It is difficult to find the right solutions that will suit everyone. When the Bill was published, I undertook to listen to the concerns of people with capacity difficulties, their families and organisations working with them to see how we could improve the Bill.A consultation symposium was organised in September 2013. The Joint Committee on Justice, Defence and Equality organised a call for submissions on the Bill in spring 2014. I thank the committee for its key role in enabling stakeholders to communicate their priorities and concerns. The Bill I am now introducing is fundamentally different from the version published in July 2013.

The co-decision-making option, which allows a person with capacity difficulties to appoint another person as a co-decision maker to take decisions jointly with him or her, has been moved from the courts. This restores the person's right to choose the co-decision maker that best suits him or her and to decide on the type of decisions which will be covered by the co-decision-making arrangement. I see this as a key change to protect the person's autonomy. It enables the person to have control of the process at all times. The Bill provides for the establishment of the office of the public guardian in the Courts Service as the body designated to undertake the functions arising from the Bill. I have responded to criticism that the name of the body was overtly paternalistic by proposing that it will be called the decision support services. The name change is designed to reflect the purpose of the body which will be to provide services to people with capacity difficulties, to those taking decisions for them and to those interacting with them in a professional capacity.

I propose the removal of provisions on informal decision making in response to concerns that they would have allowed informal decision makers to circumvent the safeguards built into the Bill. I have also sought to improve the safeguards to protect vulnerable persons against abuse, particularly financial abuse. New offences have been introduced which will enable a co-decision maker to be prosecuted, for example, for exercising undue influence or coercion over a person with capacity difficulties. The director of the decision support service will be given the necessary powers to investigate complaints. Those responsible for taking decisions on another person's property and affairs will have to submit detailed accounts as part of their report to the director of the decision support services.

A new part has been inserted into the Bill which provides for advanced health care directives. An advanced health care directive is a statement made by a person with capacity setting out his or her will and preference regarding treatment decisions that may arise in the future and in the event that he or she lacks the capacity to consent to or refuse those treatments.

I proposed a series of amendments on Committee Stage in the Dáil to the provisions on wardship which clarify that the property and income of a ward will be restored to him or her when he or she is discharged from wardship. Where a decision-making representative has to be appointed to take decisions on the ward's behalf, he or she will have responsibility for the management of the ward's funds. The decision support services will be able to point the representative towards financial expertise but will no longer take a role in managing the ward's funds. The amendment fulfils the obligation under the UN convention to enable a person with a disability to maintain control over his or her own property and income.

I have also proposed tighter provisions on the circumstances in which constraints can be used or authorised. Decisions on the restraint are restricted to decision-making representatives and attorneys only. No other category may use or authorise restraint. Decision-making representatives and attorney may use or authorise restraint only in exceptional emergency circumstances. Where there is an imminent risk of serious harm to the person with capacity difficulties or to another person, I proposed and secured agreement on Report Stage in the Dáil that the definition of restraint should include chemical restraint. The strict conditions on the use of restraint reflect my intention that restraint should be kept to a minimum and used only in exceptional circumstances.

I will now provide a detailed outline of the provisions of the Bill. Part 1 - sections 1 to 7 - provides standard provisions relating to criteria, commencement and laying of regulations. Section 3 provides for a fundamental approach to determining capacity. This is a significant step forward from the current wardship model which totally removes the person's capacity to take decisions or to enter legal transactions. Instead, this new approach assesses capacity in a time-specific and issue-specific way.It allows for a person to have capacity in one matter but not in another, enabling the person to retain the possibility of taking such decisions even when needing support on more complex matters. The fundamental model of capacity represents the most widely accepted modern capacity model internationally and is fully consistent with the UN convention.

I proposed a series of amendments to section 4, which addresses decisions on the withdrawal of life-sustaining treatment, organ donation and non-therapeutic sterilisation. All decisions on the donation of an organ from a living donor who lacks capacity will have to be determined by the High Court. Similarly, where an application in connection with the withdrawal of life-sustaining treatment from a person who lacks capacity has been made it will be determined by the High Court rather than the Circuit Court. The Bill will prohibit anyone from giving consent for a non-therapeutic sterilisation procedure on behalf of a person lacking capacity. This provision will strengthen the Bill's protection for vulnerable adults and bring it into compliance with international human rights conventions.

Part 2, section 8, sets out guiding principles which apply to every intervention under the Bill. They are intended to embed the ethos that the person's autonomy is to be safeguarded to the greatest extent possible. The first guiding principle is that a person is presumed to have decision-making capacity, unless it is proven that this is not the case. Legal capacity is, of course, presumed. The second guiding principle is that all practical steps have to be taken to support a person's decision-making capacity before a decision can be taken that he or she lacks capacity. The third is that a person cannot be deemed to lack decision-making capacity just because of a risk that he or she might make an unwise decision.

The fourth principle is that interventions should be made only if absolutely necessary. The fifth principle is that interventions, where necessary, must be made 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, autonomy and control over his or her financial affairs and property. The sixth guiding principle is that the person must be permitted, encouraged and facilitated, as far as possible, to participate in these decisions. The next principle is that any intervention must give effect, as far as possible, to the person's current will and preferences. The interveners must also act in good faith and for the benefit of the person. Finally, no action should be taken if the matter is not urgent, or if the person is likely to recover capacity shortly.

Part 3, sections 9 to 12, provides a statutory framework for decision-making assistance agreements. These are formal agreements under which a person with capacity difficulties can appoint a trusted person to act as their decision-making assistant. The person retains control over his or her decisions. The decision-making assistant's task is to access information or to help the person to understand, make or express a decision. The form and formalities of decision-making assistance agreements will be set out in regulations to be made by the Minister for Justice and Equality.

Part 4, sections 13 to 31, outlines the provisions on co-decision-making that will apply. A person with capacity difficulties will have the option of appointing a trusted family member or friend as a co-decision maker to make joint decisions with him or her. These provisions are considerably different from those contained in the Bill as published. I considered that the provisions needed to be reformed fundamentally to ensure the person had the right to enter voluntarily into a co-decision-making agreement. I wanted to ensure that co-decision making could not be imposed on a person. Furthermore, I wanted the person to have the choice of co-decision maker. The option has now been moved from the courts. The director of the decision support services is now tasked with verifying that everything is in order with the agreement and that the agreement reflects the will and preference of the appointer. There is no requirement for a declaration of capacity from the courts in order for someone to enter into a co-decision making agreement. However, an assessment of capacity by a medical professional and another health care professional is required in order to have an agreement registered by the decision support service. A capacity assessment is needed because the co-decision-making option should be selected by a person only if necessary. This is in line with the Bill’s philosophy and the option chosen should be the least intrusive possible. If a person has significant capacity to make his or her decisions the suitable option is that of assisted decision-making.A number of safeguards have been built into co-decision-making, including the supervision of co-decision-makers by the decision support service. The co-decision-maker will have to report annually to the service. A complaints mechanism has been introduced that will enable complaints to be made to the decision support service about various aspects of co-decision-making agreements, ranging from the appointer's capacity and preferences, to the suitability or conduct of the co-decision-maker. An additional safeguard allows the director to investigate a co-decision-making agreement if there are concerns in relation to fraud, abuse, incompetence or unsuitability. As I have previously indicated, new offences are proposed relating to fraud and coercion in drawing up, varying or revoking a co-decision-making agreement.

Part 5, sections 32 to 43, inclusive, sets out the court-based procedures that will apply when a person's capacity difficulties are sufficiently severe to prevent him or her from availing of the decision-making assistance or the co-decision-making options. The court will have the power to make a series of declarations to respond to a range of possible capacity needs. The court can make a declaration that the person lacks capacity unless he or she has the assistance of a co-decision-maker. The court can alternatively make a declaration that the person lacks capacity even with the assistance of a co-decision-maker. As each person enjoys a presumption of capacity unless otherwise determined, the court will not make a declaration other than where the person lacks capacity. If the person is found by the court to lack capacity, the court can appoint a decision-making representative to take specified decisions on the person's behalf, either on property and affairs or on personal welfare. The representative will be supervised by the decision support service and will be required to report to it on the performance of the role. The decision-making representative will ideally be a family member or friend who knows the person's will and preferences. Where there is no suitable decision-making representative to undertake the role, the court can select a decision-making representative from a panel maintained by the director of the decision support service.

Part 6, sections 44 to 49, inclusive, sets out how the Bill's provisions will apply to existing adult wards of court. Each ward will be reviewed in accordance with the provisions of the new system and will be discharged from wardship and appropriate decision-making support options will be put in place for the former wards where required. Reviews of all adult wards of court will have to take place within three years of the Bill's commencement. This is a demanding timescale as it requires that adult wardship must come to an end within that period.

Part 7, sections 50 to 64, inclusive, re-enacts the provisions of the Powers of Attorney Act 1996 but requires enduring powers of attorney to comply with the guiding principles and subjects them to the supervision of the director of the decision support service. I plan to introduce a series of amendments to this Part on Committee Stage to transfer jurisdiction to the Circuit Court so as to reduce legal costs arising for donors and attorneys. I also plan to propose a series of additional safeguards to protect the donor and his or her interests.

Part 8, sections 65 to 76, inclusive, was introduced on Committee Stage in the Dáil and provides for advance health care directives. In order to make an advance health care directive a person has to be an adult, that is, over 18 years of age, and must have capacity. In order for a refusal of treatment in an advance health care directive to be considered legally binding, the person must lack capacity to consent to the treatment at the time in question. The treatment being refused must be clearly identified and the specific situations in which the treatment refusal is intended to apply must also be clearly outlined. The provisions will also enable a person to outline specific treatment requests in his or her directive. These requests would not be legally binding but would have to be taken into consideration during the decision-making process relating to that person's treatment.

The provisions introduce a mechanism through which an adult with capacity may nominate in his or her directive a legal representative, who is aware of his or her will and preference, to be involved in the health care decision-making process on his or her behalf if he or she were subsequently to lose capacity. This nominee is known as the designated health care representative. Advance care directives represent an important tool by which people can exercise their autonomy in terms of their health care and treatment, which is an integral component of a patient-focused model of health care.

Part 9, sections 77 to 87, inclusive, provides for the decision support service to be established within the Courts Service and for a director to be appointed to head the service. The director will be appointed for a renewable six year term on terms and conditions determined with the Minister's consent and in consultation with the Minister for Public Expenditure and Reform. The staff of the decision support service will be staff of the Courts Service. The functions of the director of the decision support service will be to promote public awareness of the legislation and to provide advice and guidance to public and private sector bodies in this regard. The director will supervise co-decision-makers, decision-making representatives, attorneys appointed under enduring powers of attorney and designated health care representatives in the exercise of their duties and responsibilities. He or she will have the power to deal with complaints against decision-making assistants, co-decision-makers, decision-making representatives, attorneys, and designated health care representatives. The director will prepare and issue codes of practice for persons concerned with the capacity of others, in particular, for the guidance of persons assessing capacity, decision-making assistants, co-decision-makers, decision-making representatives, attorneys, health care professionals and carers generally. Codes of practice are envisaged as a key tool in promoting organisational practice that supports vulnerable people and safeguards their rights more effectively.

Part 10, sections 88 to 92, inclusive, provides safeguards to enable wards who are the subject of detention orders to be eligible for regular reviews of their detention. Persons so detained will be reviewed within three months and then within six months. The time-periods are in line with those of the Mental Health Act 2001.

Part 11, sections 93 to 119, inclusive gives effect in the State to, and allows for the ratification of, the Hague Convention on the International Protection of Adults, which Ireland signed in 2008. The convention sets the legal framework for dealing with the cases involving individuals with capacity difficulties where there is an international dimension to their situation.

Part 12, sections 120 to 129, inclusive, contains miscellaneous provisions. Section 120 ensures that there is no conflict between the Bill and the Mental Health Act 2001 with respect to the treatment of a patient for mental disorder. Section 122 retains the law in force concerning capacity in relation to marriage, civil partnership, judicial separation, divorce or non-judicial separation agreement, dissolution of a civil partnership, placing of a child for adoption, making of an adoption order, guardianship or sexual relations. I proposed an amendment, agreed on Committee Stage in the Dáil, to remove voting from this list. As Senators may be aware, there is no barrier in Irish legislation which prevents persons with capacity difficulties from voting. I am looking at the feasibility of a possible amendment on Committee Stage on the issue of serving on a jury. I proposed and secured Dáil agreement for the removal of provisions preventing a person from authorising a person with capacity difficulties to participate in a clinical trial. I believe it is important that persons with Alzheimer's for instance have the chance to participate in clinical trials of potentially life-changing drugs for their condition. There are safeguards in place already governing the participation of incapacitated persons in clinical trials. In addition, the Clinical Trials Regulation (Regulation (EU) No 536/2014), which is due to come into force in 2016, also contains extensive provisions relating to protection of those participating in clinical trials, including incapacitated persons.

Section 126 amends the Courts (Supplemental Provisions) Act 1961to allow the specialist judges appointed under the insolvency legislation to perform and exercise the functions, powers and jurisdiction conferred on the Circuit Court by this Bill in relation to capacity matters. Section 128 makes it an offence for a decision-making assistant, a co-decision-maker, a decision-making representative, or attorney of a relevant person or a designated health care representative to ill-treat or wilfully neglect a person with capacity difficulties. It sets out the penalties that will apply. Section 129 requires the Minister to review the functioning of the Act before the fifth anniversary of the date of enactment of the Act. This is an important Bill which may potentially affect every person in the country at some stage.Any of us may suffer capacity difficulties at some point in our lives. Any of us, our family members or friends faced with supporting a person with capacity difficulties may be taking the difficult decisions that may need to be taken on the person's personal welfare or financial matters.

This Bill has been refined repeatedly over the past two years so that it can respond to the needs of a diverse target audience. Its enactment is urgently needed to enable Ireland ratify the UN convention but also to sweep away the archaic legal architecture currently in place. Vulnerable persons deserve to have access to modern and more nuanced supported options. I plan to bring forward more amendments on Committee Stage to improve the Bill further. The Bill, if enacted, will be transformational for people with capacity difficulties. It will enshrine the principles of autonomy, respect and the primacy of the person's will and preference. It will put the person at the heart of decisions on his or her life. I commend the Bill.