Tuesday, 3 December 2013
Assisted Decision-Making (Capacity) Bill 2013: Second Stage
I move: "That the Bill be now read a Second Time."
I am delighted to present to the Dáil the much anticipated Assisted Decision-Making (Capacity) Bill 2013. It is fitting it should be debated today on the International Day of People with Disabilities. This Bill is the fulfilment of the Government's commitment in the programme for Government to introduce a mental capacity Bill in line with the UN Convention on the Rights of Persons with Disabilities. We specified that our aim was 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 Assisted Decision-Making (Capacity) Bill proposes a fundamental reform of Ireland's laws on capacity. It has been framed to meet Ireland's obligations under the UN Convention on the Rights of Persons with Disabilities which requires State parties to eliminate barriers preventing people with disabilities from enjoying their human rights and fundamental freedoms. Accordingly, the existing wardship system, which supplanted the person's decision-making capacity, is being abolished. It will be replaced by a significantly less intrusive system which is focused on supporting decision-making capacity rather than on supplanting it.
All persons will be presumed to have legal capacity and the right to equal recognition before the law. The Bill proposes to remove the archaic legal architecture which governed this area for too long. The Marriage of Lunatics Act 1811 will be repealed. The Lunacy Regulation Act 1871 will cease to have effect. The Bill is designed to meet the needs of older people with degenerative conditions, people with intellectual disabilities and those with mental health issues. The existing options, namely wardship and enduring powers of attorney, were not sufficiently attuned to their needs. These are diverse groups with very different needs. Accordingly, we have devised a range of decision-making support options to respond to a wide spectrum of capacity needs. A new decision-making assistance option has been designed for those who simply need support with sourcing and interpreting information.
There is a new co-decision-making option which will give those with greater capacity needs the possibility of making joint decisions with a trusted family member or friend. The enduring power of attorney option is being extended to encompass health care. This will enable those with degenerative conditions to undertake advance planning across a wider range of issues. As a last resort, where the person has serious capacity issues, the courts will be able to appoint a decision-making representative to take decisions on the person's behalf. However, in contrast to the current practice under wardship, the decision-making representative will be required to respect the person's wishes, where at all possible. We have underpinned 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 the person's will and preferences. They also require that any actions taken must intrude as little as possible onto the person's autonomy. We recognise that vulnerable people can be at higher risk of exploitation. Accordingly, the Bill provides for a series of safeguards. The office of the public guardian, the office proposed to manage this area, will have the duty of supervising those tasked with supporting others. It will be able to investigate complaints and to take action accordingly. We have decided that the agreements to appoint either a co-decision-maker or a decision-making representative must be approved by the Circuit Court. We consider that the courts-based system will allow the person to avail of these 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. A court-based system will enable capacity-related disputes to be adjudicated and instances of exploitation to be prosecuted.
Part 1, sections 1 to 7, inclusive, provides standard provisions relating to citation, commencement and laying of regulations. Section 3 provides for a functional approach to determining capacity. This is a significant step forward from the current wardship model which removes the person's capacity totally 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 some decisions even when needing support on more complex matters. The functional model of capacity represents the most widely accepted modern capacity model internationally and is fully consistent with the UN Convention. Section 4 confers jurisdiction on the Circuit Court to deal with determinations of capacity and to make consequent orders. Matters relating to non-therapeutic sterilisation, withdrawal of artificial life-sustaining treatment or organ donation are reserved to the High Court.
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 and autonomy. 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. In situations where it is not possible to ascertain the person's current wishes, the intervention must give effect to the person's past will and preferences, where they are known. Interventions must take into account the person's beliefs and values where they are known. The penultimate guiding principle encourages consultation of anyone with a genuine interest in the welfare of the person, such as those involved in helping the person, a family member, carer or health care worker. The more that is known of the person, the greater the possibility of taking decisions in line with the person's wishes. Finally, no action should be taken if the matter is not urgent, or if the person is likely to recover capacity shortly.
Part 3, containing sections 9 to 12, provides a statutory framework for decision-making assistance agreements. These are formal agreements made by persons with capacity difficulties to appoint a trusted person to act as their decision-making assistant. Decision-making responsibility remains with the person, called in this case the "appointer". 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. Section 12 proposes safeguards that prevent specified persons - such as nursing home personnel - from being appointed as decision-making assistants. Further safeguards are outlined in the provisions concerning the office of the public guardian.
Part 4, containing sections 13 to 32, outlines the provisions that apply when a person needs to avail of one of the court-approved support options. Section 15 gives the Circuit Court the power to make capacity declarations. There are two types of declaration that it may make: first, that a person has capacity to make a particular decision if supported by a co-decision maker; or second, that a person lacks capacity to make a particular decision even with the support of a co-decision maker. The latter declaration is made when the impairment of the person's capacity is such that it is necessary to appoint a decision-making representative. Sections 16 to 22 provide for co-decision-making agreements in which a person appoints a trusted family member or friend as a co-decision maker to make joint decisions with him or her. The form and formalities of co-decision-making agreements, and the range of personal welfare and property matters that may be included, will be set out in regulations to be made by the Minister. In situations where the person lacks capacity and cannot avail of the decision-making assistance or co-decision-making options, section 23 provides for a decision-making representative to be appointed to take specified decisions on a person's behalf. The court can specify whether the decision-making representative may take decisions on the personal welfare or the property and affairs of a person. A decision-making representative must abide by the guiding principles. The functions of decision-making representatives will be as limited in scope and duration as reasonably practicable. Section 29 provides that declarations of incapacity will be subject to regular review, as required under Article 12 of the UN convention. Section 32 makes it easier for those involved in capacity cases to access the civil legal aid scheme. The decision to grant legal aid will not depend on the likelihood of success in the proceedings.
Part 5, containing sections 33 to 37, sets out how the Bill's provisions will apply to existing wards of court. Each ward will be reviewed in accordance with the provisions of the new system and can be either discharged from wardship or migrated to the new decision-making support options. Part 6, containing sections 38 to 52, re-enacts the provisions of the Powers of Attorney Act 1996, but requires those vested with enduring power of attorney to comply with the guiding principles and subjects them to the supervision of the office of the public guardian. Section 41 extends enduring powers of attorney to include decisions on health care matters. Part 7, containing sections 53 and 54, provides informal decision makers with protection from civil and criminal liability if they need to take decisions on routine matters relating to the personal welfare or health care treatment of a person with capacity difficulties.
The Bill also allows an informal decision to be made without liability, pending a court decision, where this is needed for life-sustaining treatment or where the person's condition would seriously deteriorate if an action were not undertaken. However, the guiding principles apply in all instances. The wishes of the person must continue to be taken into account. These provisions are not to be used to circumvent the rights of people with capacity difficulties.
Part 8, containing sections 55 to 64, provides for the office of the public guardian to be established within the Courts Service and for a public guardian to be appointed. The public guardian will be independent and 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, under section 57. The staff of the office of public guardian will be staff of the Courts Service. The functions of the public guardian, as outlined in section 56, 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 public guardian will supervise co-decision makers, decision-making representatives and attorneys appointed under enduring powers of attorney in exercising their duties. He or she will have the power to deal with complaints against them. The public guardian will prepare codes of practice under section 63 such as for health care workers or for financial institutions. Codes of practice are envisaged as a means of getting organisations to adopt practices that support vulnerable people and respect their rights.
Part 9, containing sections 65 to 69, provides safeguards to protect against the arbitrary deprivation of liberty of persons lacking capacity who are being treated for a mental disorder. Section 67 provides that the procedures set out by the Mental Health Act 2001 will apply to decisions relating to such treatment. Sections 68 and 69 aligns the provisions for review by the wardship court of orders detaining persons in approved and non-approved centres with those in the Mental Health Act 2001. The cases of persons so detained will be reviewed within three months and then within six months.
Section 104 of Part 11 ensures that there is no conflict between the Bill and the Mental Health Act 2001 with respect to the treatment of a patient for a mental disorder. These sections will be re-examined on completion of the review by the Department of Health of the operation of the 2001 Act which is currently under way. Part 10, containing sections 70 to 102, 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 cases involving individuals with capacity difficulties where there is an international dimension to their situation. Part 11, containing sections 103 to 114, contains miscellaneous provisions. Section 103 prevents a third party from giving consent on behalf of a person with capacity difficulties to be a participant in a clinical trial. Section 106 retains the law in force concerning capacity in relation to marriage, civil partnership, judicial separation, divorce or non-judicial separation agreements, dissolution of a civil partnership, the placing of a child for adoption, the making of an adoption order, guardianship, sexual relations, voting or serving on a jury.
Section 107 provides that applications relating to a person's capacity should be heard in the person's presence unless such attendance would have an adverse effect on the person's health or if he or she is unable or unwilling to attend for a good and substantial reason. Section 108 retains the existing law concerning the capacity of a person to make a will but allows the High Court to alter a will where exceptional circumstances have arisen since the person lost testamentary capacity and where the interests of justice so demand. Section 109 allows a decision of the Circuit Court under the Bill to be appealed to the High Court and for any decision made by the latter under the Bill to be appealed to the Supreme Court on a point of law only.
Section 110 provides that the Lunacy Regulation (Ireland) Act 1871 will cease to have effect from the commencement of the Bill except for ongoing cases. Subsection (2) preserves the validity of any existing decision under the 1871 Act but allows for such decisions to be reopened in certain circumstances. Section 111 allows 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 regard to capacity matters. Section 113 makes it an offence for a decision-making assistant, co-decision maker, decision-making representative, attorney or informal decision maker of a relevant person to ill treat or wilfully neglect a person with capacity difficulties, and sets out the penalties that will apply for such an offence.
Section 114 requires the Minister to review the functioning of the Act before the fifth anniversary of its date of enactment. In addition to the provisions contained in the published document, provisions on advance health care directives will be incorporated into the Bill on Committee Stage, in line with the Government's decision of March 2013.
This legislation has benefitted greatly from the advice and expertise of many people. I thank the Joint Oireachtas Committee on Justice, Defence and Equality, in particular, for organising a call for submissions and holding hearings last year on the general scheme. Its report made an important contribution to defining our approach to the Bill. We have consulted a wide range of interest groups at each stage of the drafting process, as the needs we seek to address are so diverse. The consultation symposium held last September, attended by more than 175 people, gave us invaluable feedback on our proposals. What has been proposed in this Bill represents international best practice. Nevertheless, international legislation in this area is rapidly evolving and new approaches are being developed all the time. As such, we remain open to hearing new ideas and taking advice from stakeholders. We are prepared to work constructively with Members to improve the Bill when it goes to Committee Stage.
Most of us know someone with capacity difficulties or may ourselves experience capacity problems at some stage. This legislation potentially affects all of us. It is estimated that there are 200,000 people in Ireland with capacity issues and this figure is set to increase steeply over the next decades as the population ages. The Bill seeks to create a new world in which a person's right to make decisions is respected and safeguarded. It will involve a fundamental culture change. For too long, we have taken for granted that decisions should be taken on behalf of people with capacity difficulties. It will take time to get the supports precisely right and to change existing practices. The journey will not always be easy. The late American actor Christopher Reeve, who fought fiercely against the limits of spinal injury, once said: "So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable." It will be a proud day for me when it becomes inevitable that those with capacity difficulties are enabled to make their own decisions. We will all benefit from the flowering of self-confidence that comes to a society where everybody gets the chance to decide what is best for him or her. I commend the Bill to the House. It is about time we allowed people the right to make the wrong decision.
Fianna Fáil supports this important Bill, which makes strides towards addressing a very sensitive area. It builds on and advances the 2008 legislation drafted by a former Minister, Dermot Ahern, and underlines the importance of moving towards a supportive legal framework for individuals with intellectual disabilities and impaired decision-making capacity.
According to the 2011 census, some 57,000 in Ireland people have an intellectual disability. The Bill must be strengthened by ensuring its provisions are open to all, in line with the UN Convention on the Rights of Persons with Disabilities, which was adapted in 2006. These proposals mark an important step towards Ireland fully ratifying that convention and consolidating the role of those with disabilities in society. However, there are broader issues at play beyond the wording of a legal framework. The Government must re-emphasise its commitment to the disability sector by bringing to an end the perverse situation where large numbers of people with disabilities are having their entitlement to a medical card reassessed. That exercise is causing massive fear and anxiety. At the same time, carers are being penalised by way of the savage 20% reduction in the respite grant implemented last year, which places them under even more pressure. Having a legal framework in place is a positive step, but it requires a coherent, comprehensive plan if laws are to translate into a positive impact.
The Bill aims to update and modernise Irish law in terms of assisting those with limited intellectual capacity and will, where possible, enable greater levels of autonomy for those individuals. The legislation updates the Lunacy Regulation (Ireland) Act 1871 and creates a new flexible approach which allows a hierarchy of decisions depending on importance, rather than a black or white binary division whereby all decisions must be entrusted. It achieves this by removing the current all-or-nothing practice which excludes the possibility of a hierarchy of decision making.
In order to be certain that the Bill has the impact envisaged, we need to ensure its provisions are open to all individuals affected. Several concerns relating to what is proposed have been raised with us, and we will seek to address them on Committee Stage. One of these is the lack of clarity as to how the new legislation will interface with the Mental Health Act 2008. Another issue of concern is that access to supports which assist in the decision-making process should be broadened to ensure full adherence with the underpinning principle of autonomy. The Irish Human Rights Commission has recommended that there be a specially tailored legal aid scheme for people dealing with capacity assessment or decision. The Bill must ensure effective access to the law by introducing such a scheme. Given the complex nature of these issues and the significant shift it marks in the current system, we are proposing that the legislation be reviewed after five years to ensure it is in keeping with best international practice. This is important in light of ongoing advances in the medical world. The Bill provides for the establishment of an office of public guardian within the Courts Service, with supervisory powers to protect vulnerable persons. This office must be properly resourced to ensure its role in expanding decision-making powers is effectively implemented.
In addition to the areas specifically dealt with by the legislation, there are other aspects that must be considered in the context of these proposals. Concerns have been expressed to me that the wards of courts fund is being poorly invested and there is a lack of transparency around the fund. Some 2,650 wards of court are invested in that fund. A vital aspect of this discussion is the failure to bring forward a national disability strategy. To breathe life into the new legal framework, the Government must focus on developing a coherent strategy. The current systematic reassessment of medical card provision is generating massive fear and uncertainty among those struggling to cope with the high costs of disability. A new legal framework will mean little if it is not backed up by substantial resources that will empower people, such as family members who want to look after affected siblings or children. To date, however, the Government has failed to develop a coherent and effective strategy to integrate disabled people across a range of intellectual and physical limitations.
The 2014 budget, and Government policy in general, fail to integrate people with disabilities coherently into public service reform. The most recent budget again fails to meet the legitimate ambition of people with disabilities to live in the community with dignity and independence.
The national disability strategy implementation plan published in July 2013 was heavily criticised by the Disability Federation of Ireland, which stated it lacked ambition and a genuine whole Government approach. The need for a broader strategy is vital, in light of the fact that some 600,000 people, 18.5% of the population, have some form of disability. Some 57,000 of these have an intellectual disability. In short, disability is a major social justice issue.
Since it came into power, the Government has overseen cutbacks that have had a devastating impact on people with disabilities, such as those with impaired decision-making capacity. The annual respite care grant has been reduced from a rate of €1,700 in 2012 to €1,375 for 2013. This massive cut hammered struggling carers and the vulnerable people they look after, such as those with profound intellectual disabilities. More than 70,000 carers will be affected by the cut, in particular 5,000 recipients who are solely reliant on the payment to support their assistance. Many of these carers are guardians for people with intellectual disabilities. The €325, or 20%, cut hits people who maintain the home as the centre of care. Such high level care brings substantial additional pressures on the household budget, in terms of increased energy and fuel, and often requires the transfer of patients across care settings, adding to transport costs. The Government is hitting these carers hard by removing their discretionary one-off annual payments, which are an integral part of their yearly budget. This impacts on the individuals they are entrusted with looking after.
The deep cuts to the household benefits package will directly affect people with disabilities, as they often have additional costs in the areas of electricity, gas and telephone. The prescription charge for medical card holders has quadrupled from 50 cent to €2 per item. This measure will greatly affect people with chronic conditions and disabilities in need of monthly medication. The drug payment scheme threshold has increased by 44% since 2010 when it was just €100. Budget 2013 announced another increase to €144. Families with a disabled child or adult not covered by the long-term illness scheme or medical card will be hardest hit. The incomes of people with disabilities will be greatly affected by the new HSE service plan, which strips almost €666 million from the HSE budget. Against the backdrop of these cutbacks, the legal changes heralded in this Bill will not have any real impact unless the resources are there to give them genuine effect.
An area of pressing concern that has been raised with me by several parents is the lack of transparency around the investment of the wards of court fund. The Courts Service operates a fund for some 18,000 people, including some 2,650 wards of court. The total value of the fund is approximately €1.5 billion. Families are deeply concerned that investments have gone bad and that the money put aside, usually as a result of a court settlement, has been squandered by high risk investments and that the situation has been exacerbated by the volatility on the markets in recent years. Wards have no say in the kind of investment used by the fund. They also have no access to financial statements, beyond rudimentary facts which must be specifically sought rather than sent out as a matter of course as would happen with any normal investment fund. The lack of specific financial investment advice, as the process is mediated by the Courts Service, is a continual source of frustration for many families.
Wards are justifiably concerned that the losses sustained by the fund are not being regained, leaving them exposed to insurmountable financial burdens in the future. The wards themselves are unable to work due to the profound injures and intellectual impairments from which they suffer. They have also raised significant fears over the levels of professional fees being extracted from the fund and the lack of oversight and transparency in this aspect of the process. Will the Minister of State and her colleague, the Minister for Justice and Equality, Deputy Shatter, undertake a review of the highly lucrative court funds system to ensure it works for these most vulnerable of people?
This legislation is a positive step forward for the State. We can work towards enhancing it on Committee Stage, in keeping with the provisions of the UN convention. I trust the Minister will engage with the issue of the wards of court fund. Ultimately, the test for the Bill and the Government's impact on the disability sector will lie in what resources it is willing to commit to it.
I welcome the Bill, although it has taken considerable time to get to the House. I acknowledge that much of this time has been spent consulting with stakeholders and the experts in the field. It is important to stress to all Deputies the importance of speaking with our partners in the NGO community and to the experts working in these fields. We may be the people tasked with legislating, but we are not the experts. We need to ensure we are speaking to the people who know what they are talking about.
Once again, we are here discussing rights. As a republican, I believe that all citizens are equal and that we need to work to ensure that all citizens on this island are afforded the rights they so justly deserve. The United Nations Convention on the Rights of Persons with Disabilities states that all persons with disabilities must have equal recognition before the law. This means that those with diminished capacity must be given the same legal rights as everyone else. As we all know, Ireland has signed this convention, but cannot ratify it until new capacity legislation is in place. This is because without legal capacity, other rights guaranteed by the convention cannot be achieved. The legislation in this area is old and archaic, dating back to 1871, and is much in need of reform.
The Bill as presented is much improved from its predecessor, the Scheme of Mental Capacity Bill 2008. There are a number of important changes included in this Bill which I and my party welcome. In particular, I welcome the fact that, at its core, this Bill affords the opportunity for an individual to make legally binding agreements with others to assist and support them in making their own decisions. I am firmly of the belief that everyone should have the right to benefit from assisted decision making. Therefore, we welcome entirely the provisions of this Bill, but we believe the positive support measures contained within it should be open to all as well as being accessible, inexpensive, easy to use and flexible. We also need further clarity on the legally binding nature of assisted decision-making agreements.
Access to supports should not be based simply on a functional assessment of mental capacity. There has been a suggestion that the Bill could use a lower threshold for ability to make an assisted decision-making agreement that has been successfully adopted in British Columbia. This would make such support measures accessible to more people, while retaining safeguards to protect against abuse. We will try to develop this on Committee and Report Stages, but is this something the Minister of State and the Minister might consider? It is something I may seek to amend on Committee Stage.
There is no doubt individuals who currently have a good network of support will find this Bill beneficial. However, can we enhance it by introducing a positive obligation on State bodies to provide individuals with opportunities for developing natural supports which can be then used as the basis for creating legally binding agreements? Another important addition would be to give people more choice and control in deciding who will assist them with making these very important decisions. Many organisations involved in this area have argued that the substantive provisions dealing with decision-making representatives and informal decision makers should be amended to place a stronger emphasis on the will and preferences of the person.
The Bill provides a broad range of powers to informal substitute decision makers, who are not subject to the same scrutiny as other kinds of substitute decision makers under the Bill. This concerns me.
Is there a risk the wide scope of powers given to informal decision-makers could undermine the positive support provisions of the legislation, such as the assisted and co-decision making agreements?
I concur with those who argue these powers must be significantly restricted in scope, and accompanied by a duty to explore assisted or co-decision making with the individual as an alternative. I have spoken to a number of organisations which argued that people should have a real ability to challenge decisions made under the Bill. In particular, people who are subject to more restrictive measures under the Bill must have a real ability to challenge the appointment of substitute decision makers as well as the decisions they make. This should include the right to independent advocacy for people subject to the Bill, including the immediate and full commencement of the personal advocacy service provided for in the Citizens Information Act 2007, and learning from the valuable experience of the National Advocacy Service. Further safeguards are needed to address conflicts of interest between the individual and substitute decision makers.
There should also be an obligation on State bodies to investigate cases where there may be a conflict between the person and the substitute decision maker. The legal aid provisions of the Bill must be strengthened to ensure an automatic right to legal representation, regardless of means, when an application is made to court for a declaration of an individual's mental capacity for a decision. This is essential to ensure effective access to justice for people affected by the Bill. The costs of court applications and expenses of decision making assistants, co-decision makers, and decision making representatives should not be automatically taken from the individual's estate. This will pose a significant financial barrier to people seeking to realise their rights under the Bill.
The Bill must interact with the Mental Health Act and other relevant areas of law. The lack of interface between the Assisted Decision-Making (Capacity) Bill and the Mental Health Act 2001 must be addressed, ensuring people treated in approved centres can benefit from the positive provisions of the Assisted Decision-Making (Capacity) Bill. The Mental Health Act should be amended to reflect the provisions of the capacity legislation.
A commitment to reform other laws relating to legal capacity excluded from the provisions of the Bill must be made by Government to ensure compliance with the UN Convention on the Rights of Persons with Disabilities. This includes laws on consent to sex, voting, jury service, marriage and civil partnership. The Bill must provide safeguards for people who are detained against their will, no matter where the detention happens. The Bill does not acknowledge that people who are not wards or detained under the Mental Health Act can be unlawfully detained, such as people de factodetained in residential services. Neither does it provide any safeguards or mechanisms for the individual to challenge this deprivation of liberty. This needs to be amended to comply with recent jurisprudence of the European Court of Human Rights.
I am grateful for the opportunity to speak on the Assisted Decision-Making Capacity Bill 2013 which finally will replace the lunacy Act of 1871. I welcome the publication of the Bill as it was the main impediment to ratification of the United Nations Convention on Rights of Persons with Disabilities. For me it is all about their right to make decisions about their lives, but more importantly it is about equality and respect for the person. It is very important to state this is human rights-based legislation. There can be no hedging, ifs or buts; one either believes in equality one does not. If one believes in equality one treats the person equally as one would like to be treated. We can have all the legislation in the world, but if the State and its citizens believe that equality it must be implemented. One must eat it, sleep it and talk it, but above all one must act on it, particularly with regard to legislation. I state this as a legislator and as the parent of a daughter with an intellectual disability. I know the positive view of the legislation parents have and it is important to state this in the debate.
The new Bill will replace the wards of court system and will introduce a number of new systems to support people when they need to make decisions. The principles underlying the Bill include the presumption of capacity, that no intervention will take place unless it is necessary, that any act done or decision made must be the least restrictive of a person's rights and freedoms, and that any actions under the Bill must give effect to the person's will and preferences. The Bill also proposes to change the law from the existing all or nothing status approach to a flexible functioning definition. This means capacity will be assessed only in the matter in question and only at the time in question, so if a person is found to lack decision-making capacity in one matter it will not necessarily mean the person also lacks capacity in another matter. These are the nuts and bolts of the Bill.
Let us not forget what is going on in the broader society and what is going on in the real world for many people with disabilities. We have seen the crisis and the row in recent days over the services in the Central Remedial Clinic in Clontarf in my constituency. Many of us were very annoyed and infuriated with some of the antics and carry on. We must also look at what the Government is doing. My problem is the Government talks about equality and makes smooth comments about it, but the reality is many cuts have been made in the disability sector. Almost 35,000 children are waiting for speech and language therapy. Those on the disability allowance receive €847 a year less since 2008. Only 5% of adults with an intellectual disability are in employment. Resource teaching hours have been reduced by 15% since 2011. I mentioned the Central Remedial Clinic which has had cuts of €3 million and St. Michael's House which has had cuts of €12 million. Cuts of €666 million will be made to the health budget. We can talk about equality and rights, but the Government should stop shafting people with disabilities. It is not acceptable, it is not on and this side of the House will fight it. This is about human rights, the right to services and the rights of young adults and children in the State. As the Minister of State mentioned earlier, approximately 200,000 people will be directly affected by the Bill.
Although I strongly support the Bill concerns exist and I want to mention some of them. Mental Health Reform raised a number of concerns in its submission which it asked me to raise in the debate. It wants to ensure individuals with a mental health condition can avail of the provisions in the Bill. It wants clarification on the interaction between the Mental Health Act and the Bill, on the position of persons subject to wardship, on informal decision-making, on the use of restraints and on the position of incapacitated but compliant patients.
Will the Minister of State consider my proposals in this area and the proposals of Mental Health Reform? It should be ensured that all individuals in approved centres as defined by the Mental Health Act 2001 can avail of the provisions in the Bill. I would like a timely review on the position of all persons subject to wardship. I would also like to ensure the legislation protects people who are incapacitated and compliant. I would like the scope of informal decision-making to be restricted, particularly with regard to restraints and persons in mental health services. I would also like concerns regarding the potential overuse of medication to be addressed. Advance directives should be introduced which would be binding with regard to mental health treatment apart from life-saving emergencies.
The Mental Health Lawyers Association has pointed out a number of flaws in the Bill which prevent it from being fully in line with the Convention on the Rights of Persons with Disabilities. In particular it seems the provisions of the proposed legislation may not be available to people suffering from a mental disorder with regard to their treatment under the Mental Health Act 2001. The convention expressly states people with disabilities, including mental health problems, should enjoy legal capacity on an equal basis with others in all aspects of life. I encourage the Minister of State to examine these issues.
Another category to which consideration must be given is that which comprises senior citizens. The Bill has the potential to affect three groups within this category. The first such group is made up of those who have a full decision-making capacity for most of their lives but who suffer impairments to this as a result of conditions, such as dementia, associated with the process of aging. Dementia is an irreversible and progressive disease. As the condition progresses, those who develop it may require differing levels of assistance with decision making. The Minister of State knows well that the numbers of those with dementia are on the increase. Nationally, the number of people living with dementia is due to rise from 41,447 in 2006 to between 67,500 and 70,000 in 2021 and to between 140,500 and 147,000 in 2041.
The second group is that which comprises people suffering from an acquired brain injury such as stroke. An injury of this nature may be amenable to treatment or those suffering from it may recover all or some of their decision-making capacity. The Irish Heart Foundation states that approximately 10,000 people in Ireland suffer from strokes every year. An estimated 30,000 people with disabilities resulting from strokes are living in the community. Cognitive impairment accounts for one third of acquired disability among stroke sufferers.
The third group is that made up of senior citizens who have had intellectual disabilities since childhood and who have now reached the age of 65. Currently, there are 3,538 people in this country who are aged 55 or over and who have intellectual disabilities. According to Professor Mary McCarron of Trinity College Dublin, there is a growing population of such individuals as a result of an increase in longevity. Professor McCarron also states that in the next ten to 15 years, the largest proportion of adults with intellectual disabilities will be adults over the age of 55. I raise these issues because we must plan for those with disabilities and senior citizens.
I urge the Minister of State to consider a number of other important recommendations. In addition, I am seeking clarification form the Department of Justice and Equality on the position of persons currently in Irish nursing homes who have activated the care representative law. I ask that the Departments of Health and Justice and Equality work together to ensure that the same definitions and rules on restraint will apply to persons residing within the community as those which apply to those residing in nursing homes. The Department of Justice and Equality should consult the HSE on the practicalities involved with regard to the change to its policy on informed consent. I ask that the Minister of State and the Government examine the possibility of amending the Criminal Justice (Withholding of Information on Offences against Children and Vulnerable Persons) Act 2012 to include carers as individuals who can report offences.
The suggestions I have made are positive. Overall, I welcome the legislation and I ask the Minister of State to take on board my views.
I welcome the Bill and I am glad it will provide assistance - to a certain extent - to those who need it in terms of exercising their decision-making capacity. I am also glad that we are ratifying the Convention on the International Protection of Adults. I am sure we would all welcome the inclusion of the UN Convention on the Human Rights of Persons with Disabilities in the legislation, if that were possible.
I wish to deal with a couple of issues. A number of people have been in contact with me - I am sure the position is the same for other Deputies - about the legislation. Some of them raised concerns in respect of the power of attorney provision and the fact that the rights of the individual may be undermined. In fact, the legislation is actually designed to enhance the rights of individuals. How we will achieve a balance in this regard on Committee Stage will be important. Some very good points were made by organisations such as Age Action in respect of the issues of restraint, detention and deprivation of liberty, particularly in the context of elderly citizens. Of course, if we all live long enough, we will become elderly too and we will require the protections that will be available under this legislation.
The Bill is a step in the right direction in the context of protecting people when they are at their most vulnerable. However, there is a need for balance. It is not just a question of legislating, we must also examine the position with regard to the provision of the relevant resources. The idea of appointing public guardians is good, provided the process in this regard will be open to scrutiny and accountability. We must be honest and state that transparency and accountability are not things which we in Ireland do well. As a result, the necessary safeguards must be implemented in a rigorous manner. I welcome the change in language incorporated in the Bill. It is good that we are moving away from stigmatising people, which was the case with the language used in previous legislation.
Our guiding principle must be that decision making is not a straightforward issue. Degrees of assistance may be required at different times and the Bill must allow for flexibility in this regard. We must strive to support people in their decision making at each stage in their lives. Mechanisms such as advanced health care directives are very good and eminently sensible. Everyone thinks that it is totally logical to make a will in order to decide what happens to our goods and property after we die. Deciding in advance what will happen to our bodies if our health deteriorates thereby leaving us in a position where we will not be able to make the necessary decisions is eminently sensible, as long as it truly reflects a people's actual decisions. The difficult issue is how to achieve a balance. In Britain, horrendous cases have been exposed whereby, in essence, patients were condemned to early deaths as a result of do-not-resuscitate orders being signed on their behalf but without their permission. Institutions in this country were shut down by the HSE as a result of a lack clarity in respect of the permission given in the context of such orders. There is a need to investigate this matter.
If we are serious about protecting vulnerable and elderly citizens, we must consider protecting them in the community and in their homes. In that regard, there is a discrepancy between some of the Bill's lofty aspirations and the cutbacks to home help provision, etc. There is a great deal of evidence which indicates that people's health and decision-making capacity can deteriorate when they are removed from their family homes and placed in care settings. People tend to do better in the family home so if we are to assist them in their decision making, we should begin by protecting them in their homes and facilitating them in remaining there for as long as possible.
Age Action has highlighted the disconnect between legislation and reality. This is an issue about which we must be extremely careful in the context of the Bill. Some existing legislation did not protect service users such as, for example, people in nursing homes. I refer here to the scandals relating to the Mulross and Leas Cross nursing homes. Many such nursing homes were found wanting. The HIQA report into Mulross nursing home cited persistent failings in respect of the Health Act 2007. The concerns of Age Action are, therefore, well founded. It could be stated that at least those who operated Mulross nursing home were found out and that the facility was closed down. However, there is a need for constant attention in respect of this matter.
One of the other issues I wish to highlight relates to restraints, etc. I was recently contacted by a constituent regarding the manner in which her elderly aunt was treated in a unit linked to the Mater Hospital. The woman in question is not mentally incapacitated and she was in possession of her full faculties at the time. However, she was placed in a locked ward and could not leave. In that instance her liberty was taken from her as a result of the fact that the control for the automatic door was located behind the nurses' station. She was obliged to ask permission to leave if she wanted to vacate the unit. Her family were of the view that this was demeaning to her dignity, that it limited her contact with them and that her liberty was curtailed. In essence, they were of the view that it was an environmental restraint. The woman made inquiries to the HSE about the matter and we did too. However, we did not receive a satisfactory response. We were informed that although a restraint-free policy is adhered to, as much as possible, at the Mater Hospital, the facility in question is not officially a nursing home and - although linked to the Mater - is not covered by that policy. Account must be taken of this issue. A restraint policy must cover all health care settings and not just care homes. The rules should also apply to persons residing in the community as well as to those residing in nursing homes.