Anne Rabbitte (Galway East, Fianna Fail)
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I move:

"That the Bill be now read a second time."

I think my speech is coming.

I welcome the opportunity to introduce the Assisted Decision-Making (Capacity) (Amendment) Bill 2022 to the House. I look forward to this afternoon's debate and hearing the contributions of Deputies on this important legislation. I thank all those who have engaged with the preparation of the Bill, especially my colleagues on the Oireachtas Joint committee who gave their time to pre-legislative scrutiny for the general scheme. The committee’s report was carefully considered in the final preparations of the Bill. The purpose of this Bill is to amend the Assisted Decision-Making (Capacity) 2015 and to allow for its commencement. This will bring to an end to wardship in Ireland and usher in a new era where capacity will no longer be approached from the out-of-date and archaic status approach but instead be assessed on a functional basis. By the status approach to capacity I mean the current approach under wardship where once a person is found to lack legal capacity in one context he or she is deemed to lack capacity in all contexts. When I say the proposed legislation will move us towards a functional approach, I refer to an approach where capacity is presumed and where the burden of proof rests on rebutting that presumption. Our decision-making laws are over 100 years old. Ultimately, wardship is a disempowering system that places a third party’s assessment of a person’s best interests above the person’s own will and preference.

The proposed legislation will give people experiencing diminished capacity the opportunity to participate more equally and meaningfully in our society and have greater power to direct the course of their own lives in an independent and dignified manner. It will replace wardship with a series of tiered decision-making supports that will provide the level of assistance and support a person requires with regard to particular decisions at particular points in time and grounded in respect for the will and preferences of the person being supported. Given the impact the legislation will have on people’s lives, I cannot overstate the importance of the enactment of this legislation. We have been waiting a long time to commence the 2015 Act. Now is the time to make these critical decision-making supports available for people who need them. We have a clear obligation under the United Nations Convention on the Rights of Persons with Disability and we have a clear commitment in the programme for Government to abolish wardship. Beyond that, passing this legislation is the right thing to do for our citizens and I believe this House knows that and agrees with me when I say that.

The enactment of this Bill and commencement of the 2015 Act will allow for the decision support services, DSS, which is the organisation that will operate the progressive provisions of the Act, to become operational. The DSS will play a critical role in ensuring the different tiers of support under the act are available to those who need them and will have a supervisory and safeguarding role in relation to those arrangements. It is also vital people who want to avail of this decision support have the right information and systems available to them and the decision support services will play a key role in this regard too.

Before I move on to providing an overview of the Bill’s provisions, I will provide a short overview of some of the key changes foreseen under the Bill. The general focus of the Bill is to streamline processes and improve safeguards for those who will rely on the provisions of the 2015 Act. In that sense the Bill does not depart from the broad policy of the 2015 Act itself; rather it will enable the better functioning of the Act once it is commenced. The Bill intends to ensure the bureaucracy and administrative burden of the new system is kept to a minimum. Newly-included provisions will allow for the DSS to draw up its own forms and administrative procedures, as well as to resolve certain complaints informally without the need for automatic referral to the courts. The decision support service will also provide for the remuneration of decision-making representatives who will be made available to those who might not be able to afford to pay for a decision supporter. This is an important change in terms of equality of access to decision supports.

The Bill provides for persons with capacity difficulties to participate in health research, which is an important entitlement for all persons, and will allow for the circumstances and lived experience of people with diminished capacity to inform research and policy. Significantly, a new system for enduring powers of attorney, EPA, is being introduced. It will create a two-stage process for creating an EPA. This will see a person being able to register the EPA instrument with the decision support services when he or she has the capacity so that any questions on the operation of the power or the intent of the donor can be clarified when the relevant person still has capacity. When a donor subsequently loses capacity his or her attorney will be able to notify the DSS, which will examine the notification and supporting documentation to ensure the relevant person has in fact lost capacity, along with other matters of a safeguarding nature. Provisions will allow persons to make changes to their enduring power of attorney before it comes into force or to revoke if they no longer wish to have it activated. The enactment of the Bill will see the removal of restraint provision in private settings and will bring about the strengthening of, and protections for, the rights of wards when being discharged from wardship.

I now move to the structure of the Bill itself. The Bill is divided into three Parts. Part 1 sets out the Title of the Bill and provides for commencement orders for the coming into force of the Bill once enacted. Sections 66 and 67, relating to Part 8 of 2015 Act, will be commenced by my colleague, the Minister, Deputy Stephen Donnelly. This reflects the fact Part 8 of the 2015 Act remains the responsibility of the Minister for Health.

Part 1 sets out key functions and provides for the repeal of certain sections of 2015 Act. Among these deletions is the removal of the requirement for the director of the decision support services to exercise functions in respect of existing wards, chiefly regarding the director’s role under the 2015 Act regarding the management of estates and assets of relevant persons. Further repeals under this Part remove provisions permitting the use of restraint in private settings. These had been included in the 2015 Act to give guidance for exceptional circumstances but are being removed in the amendment Bill. Part 1 of the amendment Bill will also remove provisions that are no longer required following a change to a two-step enduring power of attorney process and remove an amendment to Mental Health Act 2001 which the Department of Health will now address as part of wider review of that Act.

Part 2 deals with amendments to the 2015 Act. These amendments include providing for a person with capacity to participate in healthcare research. This excludes clinical trials, which are separately regulated. Attorneys appointed under an EPA will be prohibited from making treatment decisions, which will give clarity to medical professionals that a designated healthcare representative is the appropriate decision supporter for medical issues. While a recommendation in pre-legislative scrutiny advised against this, it is important that there be absolute legal clarity for medical professionals who need to have one person with the authority to make what can be very sensitive decisions.

Part 2 introduces a range of amendments that deal with streamlining the processes of the DSS, allowing for it to have greater control of its own administrative procedures in relation to the appointment of decision supporters under the Act. This includes allowing the DSS to develop its own forms and procedures regarding a range of different processes. This will lead to better efficiency and responsiveness by the DSS in the interests of persons relying on decision support arrangements. The DSS will also maintain a register of decision support agreements, which can be accessed by certain persons and bodies under the Act and which will ensure well maintained and secure retention of records and agreements.

As stated earlier, the Bill introduces a new two-stage EPA process whereby the donor creating the EPA will first register it with the DSS while he or she has capacity. When the donor loses capacity, his or her attorney will notify the DSS. The EPA will come into force following the acceptance of that notification by the Director of the DSS, once it has been reviewed. Provision is made for the donor to make changes to the EPA at any stage prior to notification, including revoking the agreement, while also providing for additional safeguards within the overall process. This change requires a number of technical amendments across a range of provisions amending the 2015 Act.

Part 2 introduces additional and improved safeguards. The guiding principles provided for in the 2015 Act have been expanded to apply to all decision supporters equally, which is an important safeguard of the expression of the relevant person’s will and preference.

In line with recommendations from the pre-legislative scrutiny process, proceedings under the Act will revert to being held in camera, which better protects the rights of the relevant parties.

This is not a departure from the 2015 Act but, rather, from what was in the general scheme of the Bill. Changes to the Bill will disqualify persons convicted of any offence against the relevant persons or their child from acting as a decision supporter under the Act.

The decision-making assistant role has been clarified so that a decision supporter of that category will assist rather than advise a relevant person, while a new section is introduced to create an offence where fraud or coercion is used in respect of a decision-making assistance agreement. The DSS will draw up procedures and set out conditions where a trust corporation is acting as an attorney for a donor creating an EPA. Temporary prohibition orders and offences for the neglect or ill-treatment of a relevant person by a decision supporter are also being introduced. The director of the DSS will be given additional powers to investigate and informally resolve complaints while still allowing for a referral to be made to the courts for formal legal resolution. This change should ensure that complaints can be dealt with more efficiently while easing the burden on the courts system. A desire for informal resolution of the complaints is a recommendation of the pre-legislative scrutiny process and I am happy to have been able to include it in the Bill.

The Bill will remove the reference to cognitive ability in the 2015 Act because such language is inappropriate in the context of the Act. Part 2 provides for the removal of provisions in the 2015 Act which had provided for the use of restraint in private settings. A number of amendments provide for improved protections for current wards of court exiting the wardship regime. Where the exiting ward may only require a co-decision maker but none is available, an appointed decision-making representative will now endeavour to jointly make decisions with the person, insofar as is practicable. Wards will no longer have to seek leave of the court to apply for a review of their case, and they will be afforded the same procedures and entitlements under the Act as a person who is not a ward. Review periods for wards will also be aligned with reviews of other relevant persons under the Act and wards will be present in court for their reviews, ensuring parity.

Part 3 concerns amendments to other Acts made by the Bill and is chiefly concerned with Ireland’s important obligations under the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. The provisions in this part of the Bill are chiefly taken from elements of the Disability (Miscellaneous Provisions) Bill 2016, which lapsed with the previous Dáil. Ireland ratified the convention in 2018 and, as Minister of State with responsibility for disabilities, progressing our realisation of the convention has been an absolute priority of mine. I am therefore particularly pleased to be able to bring some of the provisions from the 2016 Bill forward again today.

The Assisted Decision-Making (Capacity) (Amendment) Bill will amend the Juries Act 1976 to allow persons with hearing impairments to sit on juries. Part 3 will amend the Electoral Act 1992 by removing the prohibition relating to persons of unsound mind from standing for election to the Dáil. Amendments to the establishing legislation for the National Disability Authority are made which allow for staff of that body to become civil servants of the State. Amendments to the Irish Human Rights and Equality Act will see the Irish Human Rights and Equality Commission, IHREC, become Ireland’s dedicated UNCRPD monitoring body. It will be supported by the National Disability Authority in that role. The Bill will provide for the gradual doubling of the minimum statutory target for the employment of persons with disabilities in the public sector, which will double from 3% to 6% on a phased basis by 2025. Amendments are made to allow a partial freedom of information, FOI, exemption relating to investigations undertaken by the DSS. This is not a UNCRPD measure but is in this Part of the Bill as it relates to changes to the Freedom of Information Act 2014. Records of the DSS not relating to investigations will fall under the scope of that Act.

I will now address the pre-legislative scrutiny report, and I thank the committee for its consideration of the general scheme of the Bill. The pre-legislative scrutiny report highlighted the need to ensure that UNCRPD obligations are acknowledged and adhered to by the DSS and by my Department regarding consultation, terminology and accessibility. I am very aware of these concerns and the importance of these issues for day-to-day integration and participation of persons with disabilities. It is important to recognise that these obligations already rest on the State following Ireland’s ratification of the UNCRPD. To be clear, there is an existing obligation on the DSS, on Departments and on public bodies to abide by the convention and to ensure that obligations in international law are met. I can assure the House that my Department and the DSS are keenly aware of their obligations under the convention, and I will ensure that all the levers in the corporate governance relationship between my Department and bodies under its aegis and in receipt of funding will be used to ensure we meet those obligations.

The pre-legislative scrutiny report recommended that the interaction between the 2015 Act and persons whose involuntary treatment is regulated under Part 4 of the Mental Health Act 2001 should be examined. The Government agrees with the committee that there should be parity here and there is no question of not addressing these concerns. Following the passage of the original 2015 Act, it was decided that the necessary provisions should be included as part of extensive amendment to the 2001 Act. I am aware that pre-legislative scrutiny is now ongoing in respect of legislation to amend the 2001 Act, and I will work with my colleague, the Minister of Health, to implement the pre-legislative scrutiny recommendation.

Pre-legislative scrutiny highlighted the need for amendments to section 85(6), which concerns the applicability of advance healthcare directives for pregnant women. I can commit to a Government amendment on Committee Stage or Report Stage that will repeal that provision of the 2015 Act and ensure parity in this regard is delivered in the amendment Bill. Pre-legislative scrutiny also highlighted the provision of legal aid and assistance throughout the Act. With the assistance of my colleague, the Minister for Justice, I can commit to an amendment on Committee Stage or Report Stage that will extend the provision of legal aid to persons exiting wardship under Part 6.

As we approach the commencement date of the 2015 Act and the operationalisation of the DSS in earnest, I am aware of a number of practitioner concerns regarding transitional arrangements and the interim care arrangements and frameworks for persons experiencing capacity difficulties now and how they may need support. In light of the need for continuity of care, Government amendments will be brought forward to allow for wardship applications that are submitted prior to the commencement of the 2015 Act to be processed to completion. The amendments proposed will take account of how such persons will subsequently transition out of wardship at the earliest juncture and in line with the overall three-year timeline for the abolition of wardship, which will not be affected.

The Bill will allow for the commencement of the Assisted Decision-Making (Capacity) Act 2015, which will bring wardship in Ireland to an end. The decision support service will become operational and will be in a position to operate more efficiently and with more streamlined processes. Persons exiting wardship will have improved protections, safeguards and procedures. As a country, we will further meet our obligations under the UNCRPD. We will end wardship and move away from a disempowering best-interests approach in favour of identifying and respecting the will and preference of persons experiencing capacity difficulty.

I commend the Bill to the House.

Mark Ward (Dublin Mid West, Sinn Fein)
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Sinn Féin supports the need to reform how wardships of court are legislated for in the State, but the Government has missed the opportunity to make Ireland a leader in capacity legislation and to fulfil our obligations under the UNCRPD. Sinn Féin will table a number of amendments to make this legislation inclusive, equal and more human rights compliant. The fact that this Bill also repeals the Marriage of Lunatics Act 1811 and the Lunacy Regulation (Ireland) Act 1871 says enough to show that updating the legislation is long overdue.

I am in a unique position when it comes to this Bill because I am a member of both the Joint Committee on Children, Equality, Disability, Integration and Youth and the Joint Sub-Committee on Mental Health.

We have the Assisted Decision-Making (Capacity) (Amendment) Bill on the agenda of the Committee on Children, Equality, Disability, Integration and Youth, and the mental health sub-committee is undertaking a review of the Mental Health Act 2001. Both are extremely important and complicated pieces of legislation. We have a chance to make Ireland a leader in legal capacity reform, but I am afraid the legislation before us is, as I said, a missed opportunity. The Assisted Decision-Making (Capacity) (Amendment) Bill the Government proposes is not compliant with Article 12 of the UNCRPD because it allows for an individual's legal capacity to be denied based on an assessment of his or her mental capacity. This exclusion is discriminatory towards people with severe and enduring mental health difficulties or psychosocial disabilities. Deputy Rabbitte is the Minister of State with responsibility for disabilities, yet this Bill excludes people with psychosocial disabilities. The Minister of State is also responsible for equality. Where is the equality in this? The argument that the Government expects that the reform of the Mental Health Act 2001 will deal with this simply does not wash. The Mental Health Act has not been reformed since 2001. The principal Act we are dealing with is from 2015, seven years ago.

In the meantime, people who come under the Mental Health Act do not have the same rights as other people with disabilities when it comes to advance healthcare directives. The use of advance healthcare directives must be awarded to those who come under the Mental Health Act. If that does not happen, it could mean, in layman's terms, that if a person who comes under the Mental Health Act goes to the trouble of doing an advance healthcare directive, it will not be worth the paper it is written on. For example, if a person states in their advance healthcare directive that they do not consent to electroconvulsive therapy, ECT, also known as electric shock treatment, and they are subsequently detained under the Mental Health Act, their wishes may not be followed. That could happen very easily. It is already happening. In 2020, 20% of all ECTs administered in this State were done without consent, with 442 patients subjected to this treatment without their consent. As the legislation stands, people who are involuntarily detained do not have the right to have their advance wishes about treatment respected, even though they had the capacity to make decisions about their mental healthcare and treatment at the time of making the directive. No other group of individuals is specifically excluded from this legal right.

Another issue we have, which we mentioned during pre-legislative scrutiny, is the rushed process for this legislation. No one wants to delay this legislation, but we must get it right. We must also ensure that everyone, particularly those affected, namely people with a disability, has a right to fully understand the legislation. During pre-legislative scrutiny, members of the committee were asked to submit their questions early to members of disability organisations who were appearing as witnesses before the committee. I was one of those who took part in that process. The early submission of questions allowed the people with disabilities the time to understand the questions and to prepare their answers. That gave us a really telling insight into how this legislation will affect people with disabilities. I thank Peter Kearns from Independent Living Movement Ireland and Joe McGrath from the National Platform of Self Advocates for telling their stories. As Mr. McGrath said, however, they are allowed to participate only in storytelling and not in decision-making.

I am a Deputy, I have two staff members, I do not have an intellectual disability and I have found this legislation extremely complex and very difficult to understand. The quick timeframe has made this even more difficult. I ask Members to imagine for one minute they are a person with a disability who wants to be able to understand and to partake in this legislation that will ultimately affect their lives. I ask them to imagine how that feels.

The committee report recommends that we must ensure accessible and inclusive processes of consultation and that every effort should be made by Departments, in compliance with the public sector equality and human rights duty, to carry out meaningful engagement with those directly affected by legislation prior to publication. In the case of legislation impacting disabled people, it should be developed in line with the UNCRPD. In my opinion, and in the opinion of the people in disability organisations to whom I have spoken, that simply did not happen. We are back to patting disabled people on the head and saying, "Thanks for your story, but we will take over from here."

I spoke to Joe McGrath again on Tuesday, and one thing he said to me made more sense than anything else I am after hearing. The reason we are amending this legislation now and the reason we have a constitutional challenge is that the 2015 legislation was flawed. Let us therefore take our time and get it right this time. The Bill does not recognise the need for meaningful engagement with people directly affected by this law. Another example of this is that it requires IHREC to engage with the National Disability Authority in carrying out its monitoring role under the UN Convention, rather than IHREC engaging with organisations in which the likes of Joe and Peter are involved. I support the need to reform this legislation but I feel that the Government has missed the opportunity to have the voices of disabled people and people with psychosocial disabilities at the heart of this legislation. The Minister of State had a 20-minute speech and I did not hear one voice of a disabled person in that speech, which is very telling. As Joe McGrath has said, and I would say he has said it to the Minister of State as well, "There should be nothing about us without us." They need to be included.

I welcome that the committee's recommendation on pregnant women and advance healthcare directive has been taken on board. That is very welcome, but we need more. This Bill is like having an open goal and turning it into an own goal: it is very close but not close enough.

Donnchadh Ó Laoghaire (Cork South Central, Sinn Fein)
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This area of legislation has been talked about for many years. The 2015 Act was imperfect, but even it had a long and winding history to get that far. Our history - and I include our very recent history when I say that - is, unfortunately, blighted with stories of people with disabilities, including intellectual disabilities, who have been institutionalised, locked away and hidden away from the rest of society. At times, the wishes of their families were not respected. More often than not, their own wishes were not respected and they were effectively considered to be incapable of expressing or having their own wishes or of being in a position to consent to anything. That led to mass institutionalisation. Sometimes in the Dáil reference is made to the percentage of our GDP we spend on mental health and how much higher the percentage was once upon a time. In some ways that reflects the fact that we do not spend enough today - and there are issues with recruitment, and I know all that - but it also reflects the fact that a huge amount of the budget once upon a time was for mass institutionalisation of people with intellectual disabilities. It was the Irish State's response to so many things, including unmarried mothers and children. We lived in a State that was carceral, where the solution to many things was institutionalisation.

We have moved away from that, but it is still not very long ago that there were issues around consent and electromagnetic treatment. It is within only the past decade that the latter has been dealt with, and even right up to this day there are issues in that regard. It is very important we address that.

There are steps forward in this legislation but, as Deputy Ward and Mental Health Reform have identified, there are flaws in it. I hope we can address them through Committee Stage and the remaining Stages of the legislation.

Of particular concern is the fact Deputy Ward and Mental Health Reform have flagged, that is, that in respect of people who are involuntarily detained under the Mental Health Act 2001, sections 85(7) and 136 of the 2015 Act have not been amended and those people are not being given the right to have their advance wishes about treatment respected, even though they may have had the capacity at the time to make decisions. That is an important consideration. Advance care directives are very important and valuable. If somebody had the capacity previously and, at the time of having that capacity, expressed those wishes, of course those wishes should be respected. As the legislation stands, however, they are not being respected. That is discriminatory. I urge the Government to address the position of people detained under the 2001 Act in that context.

I echo the point made by Deputy Ward that we support the need to inform how wardships of court are legislated for and that this legislation could have been stronger in making Ireland a world leader in capacity legislation and to fulfil our obligations under the UNCRPD. Accordingly, amendments will be tabled by this side of the House to strengthen the legislation.

I will flag once again the concerns on wardship that have been raised by organisations such as the Justice for Wards group led by Mary Farrell. It has raised concerns about how the funds for supporting wards of court are managed. It is primarily a Department of Justice and Courts Service issue, but I would flag again that there were concerns about how the funds are managed. I will finish on that point.

An enormous amount of travel has been done but, as yet we are still not anywhere near where we need to be. We must respect the wishes of a person who is affected by treatments, or any decision made in regard to him or her, to the maximum extent possible. Where possible, the person's voice should be the ultimate and the legislation we draft and pass should reflect that.

Patricia Ryan (Kildare South, Sinn Fein)
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I welcome the opportunity to speak on the Bill and I sincerely hope that it fares better than the 2015 Act, where significant sections were left uncommenced.

This Bill repeals the Marriage of Lunatics Act 1811 and the Lunacy Regulation (Ireland) Act 1871. These Victorian Acts and their phrases have no place in our health service. The reforms in this Bill are long overdue. The current wardship system is not fit for purpose. This Bill will make significant progress in terms of our responsibilities under the UN Convention on the Rights of Persons with Disabilities. Ireland must immediately ratify the optional protocol.

The hit-and-miss consultation with stakeholders during the development of this legislation is something that needs to change. Deputy Ward made a similar point to mine. We are all familiar with the phrase, nothing about us, without us. Unfortunately, those who are not invited to dinner often find themselves on the menu. Stakeholders must be consulted in further reviews of this legislation and in the development of complementary legislation. The Government can bring forward as much legislation as it wants, but if this is not backed up with resources, it is set up to fail.

The health, social care and disability sectors that are the focus of this Bill have a long history of being under-resourced. Staff working in these sectors and family carers are struggling and need our support. They are saving the State a fortune and it is high time that the Government reinvested in them.

The Joint Committee on Children, Equality, Disability, Integration and Youth has made more than 60 recommendations on how this Bill can be improved. While we in Sinn Féin are generally supportive of the Bill, we see it as a missed opportunity to position Ireland as a world leader in legal capacity law reform. As the Minister of State already heard, we will be tabling a number of amendments to deal with the concerns outlined to us by advocacy groups and to make the legislation inclusive, equal, and human-rights compliant. People with mental health disabilities are excluded from this Bill, which is wrong.

Advance healthcare directives should be extended to people in all healthcare settings, including those detained in hospital for mental health treatment and all pregnant people. If we are serious about reform, arrangements must be made for those in prison and other institutions to access the Bill's provisions. Accessibility and ease of use must be central to the Bill's provisions. This must include the provision of non-digital routes and the removal of the requirement to have a MyGovID to register with and use the decision support service.

Pat Buckley (Cork East, Sinn Fein)
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I thank the Minister of State, Deputy Rabbitte, for her comments on the Bill. I echo what the other speakers have said. I wish to touch on a few additional points in the short time I have. In her opening remarks, the Minister of State mentioned that we ratified the convention in 2018. Back in 2016 and 2017, I remember the then disability spokesperson, former Deputy Caoimhghín Ó Caoláin fought very hard for the optional protocol to be included in the Bill. It is one of the most important parts of any Bill when it comes to rights for people with disabilities.

I listened to what was said by other speakers. While nothing is perfect and people can work together, there will be amendments, but as other speakers have mentioned, the reform of wardship is necessary, as there is a currently a significant problem in that regard. I am not 100% sure how things will transition from there.

It would be remiss of me if I did not thank the Oireachtas Joint Committee on Children, Equality, Disability, Integration and Youth for its work on pre-legislative scrutiny and also the Joint Sub-Committee on Mental Health. I also thank the stakeholders that were included, although obviously some were not.

It is a very complicated piece of legislation, but we are moving forward. With the Assisted Decision-Making (Capacity) (Amendment) Bill and the decision support services that should be in place show how our archaic mental health laws have been so damaged and tangled that, as it stands, we are not helping people. The Minister of State will have heard me speak in the Chamber about the current state of the Owenacurra mental health centre in Midleton. The patients there did not get the options outlined in the Bill, despite what the Ministers of State and the Minister have been told about it. I feel very passionately about mental health and mental health legislation.

I welcome elements of the Bill too: it is not all negative. The committees had a very short timeframe for pre-legislative scrutiny. There were already approximately 87 amendments to this Bill. There are stakeholders outside and inside this House who will probably table more amendments to the Bill.

When I come in here, I often say, let us do something that is right, but is different and makes us become world leaders. We have a reputation in this country for being the best people, the friendliest people and whatever else, but we should have the same empathy and compassion when we go through legislation and come out the other end. It might not be us who are here in two, five or ten years' time, but please God we will be alive, and we will say to ourselves that we are glad that we stuck together, that we all worked on this and made this country a better place. We legislated for the people that we are supposed to represent in this House.

The Minister of State said: "I welcome the opportunity to introduce the Assisted Decision-Making (Capacity) (Amendment) Bill 2022 to the House. I look forward to our debate this afternoon". It is a debate, but the points have to be made also. We do not want to rush the legislation because we want to get it right. We want to get it spot-on. As I speak about the Bill in the House, I am conscious that as legislators we have let people down in the past. We have legacy issues in this country whereby the most vulnerable have been treated deplorably. The word "disability" is a label and a tag that is given to people because of a condition they have, but the condition is not their fault. It is about rights. While society labels people with a disability, the problem is that they are being cast aside and mistreated because we are not legislating for their rights. It could be as simple as not providing a ramp on a footpath for a wheelchair user to improve access and help people to cross roads. We are the failures, because we have not supplied those people with everything that they need to live the fullest life they can. I could talk for hours on the Bill but I am running out of time. This side of the House will table amendments, not to fight but to provide clarity and in order to get this right.

Anne Rabbitte (Galway East, Fianna Fail)
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I am open to that and I will do it.

Cathal Crowe (Clare, Fianna Fail)
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I thank the Minister of State for being in the Chamber. I have been watching the debate from my office and, as always, she has been engaging and has not just been sitting on the front benches playing on a phone. She is taking notes. She is surrounded by a great team, including Mr. Noel Byrne, and its members are always good in taking on issues when I contact them.

The topic of special needs is close to my heart. When I come home from the Dáil, there is someone at home close to me who has special needs. It is a part of my life and is why I went into teaching. It is probably why I entered politics in 2004, fighting for and championing the underdog. It is a cause that the Minister of State shares.

This is positive legislation, the genesis of which is the 2015 Act, which was also positive legislation. I watched that legislation's passage from outside Leinster House many years ago. This amending Bill gives it new effect, ties up certain elements and is more moderate and reflective.

The Bill contains a number of critical provisions, one being the ending of the outdated wardship system, which I believe dates back to the late 1800s. It is great to see it being dismantled in 2022 and replaced with a far more modern framework, one that helps vulnerable people like my family member and others to make assisted decisions, with the correct supports in place. This legislation recognises them for the adults they are. Sometimes, people cast them aside and dismiss them as being "childlike", a term that I hate. These are people who are adults in mind and body even if how they function from day to day is a little different and more challenging than it is for the rest of us, and they need their rights enshrined in legislation if their futures are to be protected. Some 200,000 people have issues relating to capacity. They are the ones far beyond these walls who will benefit from the legislation when it is tweaked, finely tuned and enacted.

I wish to pay tribute to an amazing advocacy group in County Clare. The Minister of State has met it several times, namely, the Clare Leader Forum. All of us have had lobby groups at our doors, but this is a group that calls politicians every few weeks and hauls us in. If we have anything else scheduled, we must scratch it off our agenda and meet this group. It keeps us razor sharp on all of the relevant issues. I wish to name some of its members on the record – Ms Anne-Marie Flanagan, Mr. Martin Tobin, Mr. Dermot Hayes, Ms Jennifer Hynes and Mr. Liam Mulcahy. There are many others. They looked the Minister of State in the white of her eyes a few months ago and told her that they wanted the UNCRPD, up to and including Article 12, to be fully enacted and provided for within Irish legislation. This Bill does that.

I am happy to see the doubling in the number of people with disabilities working in the public sector. I have worn a path to EmployAbility Clare. It is an amazing and fantastic body, but we need to focus on what happens beyond its office. I do not know whether many employers listen to Dáil debates – I am sure they have better things to be doing at 3.55 p.m. on a Wednesday than listening to what we say in the Chamber – but if a message were to come out of this debate, it would be that they should look at employing people with disabilities. A disability or limited capacity is only one aspect of a person's being. The people I know, and the people I taught in my classrooms for many years, have strengths and would be an asset to any workplace. We should not need laws to require people to take on such persons.

The Leas-Cheann Comhairle is present. She always gives a little bit of latitude in these discussions. I need to mention the Education for Persons with Special Educational Needs Act 2004, or EPSEN Act, which is relevant to the Minister of State's Ministry to some degree even though it is in the realm of education. It was critical legislation. When I was at Mary Immaculate College preparing to be a teacher, the Act was hammered home to us time and again. Its backbone is the premise that a child with special educational needs would be schooled in his or her home mainstream environment. It might not have mattered too much to the teacher – it was just another person in the class and we had to change how we taught a little by differentiating – but it made such a difference when the school bell rang in the evening because that child would be invited to a local party or go on a play date. These children were growing up with their peer groups, not being sent to special needs schools far removed from them. I am not saying that there is anything wrong with special needs schools. I have a family member who attended one and thrived. Instead, I am saying that too many children in the 1980s and 1990s when I was growing up got to seven or eight years of age and their needs could not be appropriately provided for in their local mainstream schools, so they went to fabulous special needs schools. The EPSEN Act transformed everything. It may be 18 years old, but it is still current and is still empowering for people, particularly youngsters who are struggling in school.

I was dismayed to hear that there were talks of providing clustered centres for children with special educational needs in Dublin. Dublin is far removed from me - it is 120 miles away and getting here takes me two and a half hours - but the spirit of what has been suggested for Dublin is all wrong. The EPSEN Act might be 18 years old, but it provides for youngsters to be educated in their local schools with their local peers and to be invited to birthday parties and play dates. That is what we want. That is where children thrive. Not everything is learned in a textbook. Not everything is learned by the teacher explaining for the 20th time how the number is carried when subtracting. Not everything is learned in that environment. Most learning is done in the schoolyard with a peer group. If we start shipping youngsters with special educational needs back out to clustered centres of education, we will lose everything that the EPSEN Act gave us. I know that this is not directly under the Minister of State's remit, but she is the Minister of State with responsibility for disability. She is a champion for people with disabilities and capacity issues. There is a realm of politically correct terms, and they are all such good terms. I ask the Minister of State to fight in government to ensure that we do not return to clustered environments.

If we have specialised schools they are there for a reason. They are there because they are bespoke and meet needs but let us not get back into clustered settings. A youngster in Meelick National School or Parteen National School starting off primary education, with whatever challenges and difficulties they have, should be able to progress in that pathway right the way through primary and secondary level. Let us not regress. Overall this is fantastic legislation. I know there will be amendments, some of which I have read. They are made with good spirit and are guided by the right principles. Let us enact this legislation and give people the power to make their own decisions.

Ruairi Ó Murchú (Louth, Sinn Fein)
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I add my voice to what many of my colleagues have spoken about and we are glad that we are getting to grips with an issue we have failed miserably with in this State over many years. However, I cannot help but think that this Bill is somewhat too rushed. We have heard Members say already that questions remain on its workability and on whether it is failing. That is on either side of the argument on assisted decision-making and dealing with the wider issue of capacity. Like I said, we have a history in this State of failing to deal with these issues. We literally hid people away in big institutions and we definitely did not look after their needs. We all know we are trying to move to a better place.

I would reiterate an awful lot of what Deputy Cathal Crowe said about special needs education and the fact that there have been mass improvements but that we still have a planning deficit in seeing the needs that are there, including education or anything else. The Minister of State and I have dealt with a number of disability issues that cross housing and that are somewhat complicated. If there is a difficulty, I imagine the interaction between the Minister of State and Louth County Council will not be perfect but hopefully we will bring that to a conclusion in this Bill. It shows the fact that we have not allowed for dealing with issues of disability. I know some people have brought up with me the issue of ensuring we have workability in decision support services. There may be people who lack capacity and unfortunately we may end up in a court setting before we can trigger what is needed. I am always afraid of anything that relates to courts from the point of view that they are backlogged. These are situations where people are trying to facilitate those people with their financial matters and all the rest of it. That is accepting that we are also coming from a place where we want to protect people who have been manipulated and have found themselves in difficult circumstances over the years.

We support the fact that we need reform and legislation on wards of court and we need to make sure we have a better process in play. We also need to fulfil our obligations under the UNCRPD in that regard. Many of my colleagues have mentioned that we will be putting amendments and we hope these will be taken as they are intended from the point of view of us getting to a better situation. The Minister of State alluded earlier to the fact that there is still a need for a greater amount of interaction with the stakeholders, namely, the disability groups and the people who will fall under this bracket. We need to ensure we allow enough time for all this to happen.

Holly Cairns (Cork South West, Social Democrats)
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I am deeply worried about this Bill. When I was driving up from west Cork this week I was trying to think about how I could convey my profound concern for what the Government is doing. This Bill will have far-reaching consequences for disabled people, older people and individuals experiencing mental health difficulties. It affects how they can make decisions about their lives. This Bill should have been developed in partnership with disabled people. Instead it is being rammed through, ignoring their calls for a transparent and collaborative approach. Not only is this morally wrong but it is also in obvious breach of the UN Convention on the Rights of People with Disabilities.

This Bill should be about structures that presume individuals have capacity and empowers them. Instead, disabled people and human rights experts are warning that it is establishing a system that enables discrimination, exclusion and abuse. Crucially, the Government is allowing a process where a large number of unqualified people can make assessments of an individual's capacity. For example, a bank teller could decide that a disabled person or an older person cannot have access to their own money. This is a terrifying prospect that not only breaches rights but pushes disability rights back about 20 years in this country. There are numerous other issues with the Bill, including a clause relating to medical procedures that goes against the repeal of the eighth amendment, continues to exclude many disabled people from jury service in a discriminatory manner and retains an assessment called the functional test of mental capacity, which has been deemed a human rights violation by the UN Committee on the Rights of Persons with Disabilities.

The Bill is being rushed through without inputs from those it affects. This Bill breaches the rights of disabled people and will create further discrimination. This Bill will be the subject of suffering, litigation, and dispute for years to come. On each occasion people will look back and ask how this was allowed to happen. The Minister of State needs to stop this now and she needs to listen to disabled people and human rights experts. The most glaring issue in this Bill is the disregard for the perspectives of people with disabilities. Article 4(3) of the UNCRPD states, "In the development and implementation of legislation and policies to implement the present Convention ... State Parties shall closely consult with and actively involve persons with disabilities". The Government and the Department of Children, Equality, Disability, Integration and Youth have knowingly, and therefore intentionally, breached this article. In the development of the Bill and in the determination to ram it through this House, the Government is violating an international human rights convention. The report of the Committee on Children, Equality, Disability, Integration and Youth highlighted that "A significant number of stakeholders highlighted that there was no public process organised by the Department to engage with DPOs, family carers or other relevant persons and that there is no plain English or easy-to-read version of the Bill." These are not only significant barriers, but they are representative of institutional discrimination. Joe McGrath, a committee member of the National Platform of Self Advocates, articulated this issue well when he said:

This law is very important for us but we have not been given enough information about it. Since the law was passed seven years ago, no one from Government has told us what we need to do to get ready for it. ... This is not good enough. Everyone has the right to know what the law means for his or her life. There should be an easy-to-read version of the law so that we can understand it for ourselves.

In essence this Bill has been developed, designed, and written with no meaningful input from disabled people, disabled persons organisations, and others affected.

The Justice for Wards group has also highlighted a lack of engagement. During pre-legislative scrutiny, officials from the Department revealed that they were using a decade-old consultation. Not only is the Minister obliged to engage with these groups, but they are enthusiastic to be heard. They have been proactive in attempting to engage with the Department but have been ignored. Disabled persons organisations, older people's groups and Mental Health Reform are all eager and available to help and work with the Department and the Decision Support Service. Intentionally disregarding their wealth of lived experience and shared knowledge is disgraceful, as well as violating the UNCRPD.

The speed at which the Bill is being rushed through compounds the harm being done. The 70-page Bill was published on Friday evening and it is being discussed today and tomorrow, with amendments due next week. I will be honest in saying I do not understand half of the Bill. It is written in extremely dense language which can only be understood in conjunction with the original Bill. In such a short timeframe, I do not have the capacity to engage with it all and to draft proper amendments and it is my job to do that. I am relying on the expertise of others to help me understand this, in particular the centre for disability law and policy in National University of Ireland, Galway. What chance is there then for those directly affected by the Bill? Campaigners have asked for time to engage with the Bill and for an easy-to-read version. What is the Minister of State’s response? It cannot just be to ignore them and move on. This is so wrong and it is bad lawmaking. It is something we should not even be talking about in 2022.

The Committee on Children, Equality, Disability, Integration and Youth is also part of the problem here and we acknowledge that our pre-legislative scrutiny process was less than exemplary given the short timeframe we were given. As such, it cannot be considered to represent meaningful and inclusive consultation on the Bill. Reflecting its development without enough input from disabled people, the legislation does not recognise the need for meaningful engagement with people directly affected by this law.

The Bill delegates powers to the Decision Support Service without mandating that office to engage meaningfully with disabled people, older people and people with experience of mental health services in exercising those powers. During pre-legislative scrutiny, it became clear the Decision Support Service had not been meaningfully inclusive of disabled people in the drafting of its codes of conduct. This is worrying for two reasons. First, the practical implementation of this Bill will be through these codes of practice for assisted decision-making, which have had no real input from those affected. This is a blatant example of a paternalistic understanding of disability that ignores the agency and rights of disabled people and older people. Second, it reveals that a paternalistic and non-inclusive culture already exists in this new office. It is essential that the Bill compels the Decision Support Service to work in conjunction with those affected.

The pre-legislative scrutiny report recommended that the Decision Support Service must progress and intensify meaningful engagement with disabled persons organisations and other stakeholders in the development of guidance resources and that it must assign the necessary resources to achieve this in a timely manner. If the new office is to have any credibility, this requirement must be added to the law to ensure the service complies with the Convention on the Rights of Persons with Disabilities and respects disabled people, older people and people with experience of mental health services. All of this comes down to having the decency to engage with those affected and following the State's obligations under the convention. Mr. Joe McGrath of the National Platform of Self Advocates told the Oireachtas committee:

We want the Government, the Minister, the Department and the Decision Support Service to listen to and work with us. Nothing about us, without us.

There are several issues within the law, and some that are absent from the law, that need addressing. The first issue is fundamental to the whole framework. It is that the Bill does not go far enough to guarantee presumption of capacity, which is the purpose of the legislation. The law should operate from the position that all individuals have capacity unless it is proven otherwise, similar to the presumption of innocence in our legal system. The Bill, while designed to support people, also gives the right to remove or restrict a person's decision-making capacity. This is an incredibly serious power that needs to be very tightly controlled and limited. Only the courts should have that power. A court has the capacity to listen to medical, legal and other experts, as well as to family members, and to make an impartial decision on that basis. This can and should be the only means by which decision-making capability is removed from an individual.

The Oireachtas committee heard wide-ranging concerns from witnesses regarding the need to strengthen this principle in the Bill. At all stages, relevant persons should be presumed to have capacity unless a court decides otherwise. The obligation must be on other parties to establish a lack of capacity rather than the relevant person having to prove his or her capacity. In its submission to the committee, Independent Living Movement Ireland was very clear on the need for the Bill to provide for "the presumption of capacity and the protection and promotion of a person's will and preferences". It called for specific reference in the legislation to the need to "ensure the autonomy of disabled people to live the lives of their choosing".

During the pre-legislative scrutiny process, stakeholders raised issues with the Decision Support Service's draft codes. They pointed out that a wide range of actors, including legal practitioners, financial professionals and healthcare professionals, can carry out assessments of capacity as they see fit. These individuals can then make decisions about whether to respect the relevant person's decision based on their own assessments, without any recourse to or oversight by the courts. This simply cannot be allowed. It is a highly problematic and dangerous proposal that gives a whole range of people, albeit possibly well-intentioned, the power to remove or limit an individual's decision-making capacity. This is incredibly worrying and irresponsible. I gave the example earlier of a bank teller being given the power to stop a person with a disability or an older person from withdrawing money from his or her account. The standard must be a presumption of capacity and it is up to the State and others to prove otherwise in court. This principle must be embedded in the legislation. At the moment, it is not sufficiently articulated, as evidenced by the Decision Support Service's own draft codes.

The second issue concerns what is referred to as the functional test of mental capacity. This practice has been deemed incompatible with Article 12 of the Convention on the Rights of Persons with Disabilities. The functional assessment of capacity typically focuses on whether a person is able to understand information and use and weigh the information that is relevant to a decision. General comment No. 1 of the UN Committee on the Rights of Persons with Disabilities clearly states that the test should not be used to deny someone's rights. The committee recognises it as an unreliable method of assessing the inner workings of the human mind. The test discriminates on the basis of disability and has been recognised as a subjective method of assessment, with individuals receiving different results depending on the person conducting the test. It is truly shocking that the Bill does not make provision for the ending of this practice. The Oireachtas committee's recommendation in this regard was very clear, stating that the Bill should remove the functional test of capacity and replace it with an obligation to acknowledge, interpret and act upon the relevant person's will and preferences, in line with the Convention on the Rights of Persons with Disabilities.

Third, the Bill does not remove a section of the Assisted Decision-Making (Capacity) Act 2015 that reflects the situation prior to the repeal of the eighth amendment. An advance healthcare directive is a statement people can make on the types of medical or surgical treatments they want or do not want to receive if they are unable to make such decisions in the future. However, under section 85(6) of the 2015 Act, an advance healthcare directive is not valid or applicable if it includes a refusal of treatment where such refusal "would have a deleterious effect on the unborn". Parts of an individual's advance healthcare directive may be disregarded if refusal of a treatment would have such an effect. This means a person's will to receive or refuse a required treatment is restricted if she is pregnant. This section reflects the language of the eighth amendment and it has no place in post-repeal Ireland. Professor Eilionóir Flynn of NUI Galway stated at the Oireachtas committee: "These sections are simply unnecessary and can be deleted from the legislation." It is welcome that there appears to be a willingness on the part of the Minister of State to do that. However, the question remains as to why this provision was included in the draft we received last Friday. It is evidence of how rushed this legislation has been.

The fourth issue is that the Bill continues to exclude many disabled people from jury service in a discriminatory manner. Section 82 is highly problematic and discriminatory in this regard. While it recognises the right of deaf people to sit on juries, it goes on to exclude whole cohorts of people from doing so. It introduces the paternalistic language of "sufficient mental or intellectual capacity". Furthermore, there is a typographical error in the Bill in its reference to "incapacity", which does not make sense in the context. This language is inconsistent with the 2015 Act, which deliberately does not include any reference to specific cognitive impairments. Disabled Women Ireland has pointed out that this type of language focuses on the person's impairment and how it may make it difficult for him or her to participate in jury service. It does not recognise or place any onus on the State or the Courts Service to reasonably accommodate such persons to participate.

This paternalistic and medicalised model of disability, focusing on incapacities rather than putting forward progressive laws and associated supports to assist disabled people to participate in juries, must go. Serving on a jury is a civic responsibility in our Republic but this Bill will exclude whole cohorts of people from doing so. As stated at yesterday's briefing, many people try to get out of jury duty but there are many disabled people who want to serve. Instead of empowering these individuals, the Bill intentionally excludes them. Back in 2013, the Law Reform Commission report suggested that much more inclusive and progressive language should be used. That is the type of approach we should be pursuing.

Another point in respect of section 82 concerns its implications with regard to mental health, which are disgusting. It makes provision to exclude:

A person who suffers or has suffered from mental illness or mental disability and on account of that condition either— (a) is resident in a hospital or other similar institution, or

(b) regularly attends for treatment by a medical practitioner.

This is highly stigmatising language. Anyone who has or has had a mental illness and who has seen a doctor several times about it could be excluded from jury duty. On what basis should that be done? Why are we even talking about such a thing and how can it be considered in 2022?

There are several other issues that need attention but which I can only mention briefly in the time remaining. The removal of information on treatment decisions from enduring powers of attorney, and forcing people to create a separate advance healthcare directive instead, creates additional complications and barriers.

Disabled persons organisations, legal experts, advocacy organisations and others argued that this would be less accessible, more complex and inefficient.

Mental Health Reform has highlighted outstanding issues regarding involuntary detention. As the legislation stands, people who are involuntarily detained do not have the right to have their advance wishes about treatment respected, even though they had the capacity to make decisions about their mental health care and treatment at the time of making their directive. No other group of individuals is specifically excluded from this legal right. This exclusion is contrary to international human rights standards.

As highlighted in pre-legislative scrutiny, family careers are being treated differently from decision-making representatives appointed by the court. Those appointed will receive expenses and remuneration, but this provision has not been extended to carers. This is another case of the State taking family carers for granted. The committee heard the challenges carers face with how little support is offered by carer's allowance and the conditions for qualifying.

There is the bizarre requirement for the Irish Human Rights and Equality Commission to engage with the National Disability Authority in carrying out its monitoring role under the UN convention, rather than mandating the Irish Human Rights and Equality Commission to engage with disabled people's organisations. The National Disability Authority is not an disabled person's organisation. The Bill specifically requires IHREC to engage with organisations other than those representing disabled people.

I have touched on some of the major issues with this legislation, but even more significant are the unknown issues. Because the Department and the Decision Support Service have not meaningfully engaged disabled people, older people and people with experience of mental health services, there are potentially significant matters we are unaware of. The practical purpose of Article 4 of the Convention on the Rights of Persons with Disabilities is to make laws informed by those they will affect most. Instead, this breaches the rights of disabled people. The people it will affect most have been excluded. There is still time for the Minister to do the right thing and halt the process until adequate consultation has occurred. This legislation will have far-reaching consequences for whole communities of people. It will be the subject of litigation and human rights challenges, all of which could be prevented if the Government adhered to its human rights obligations by respecting and engaging with the people affected.

I again quote Joe McGrath of the National Platform of Self Advocates. Not only does he have a better understanding of the convention than the Government, but he sums up the issue very well, "Let's get this legislation right so we don't have any constitutional challenges ... We're the ones who are going to have to live with it". I cannot implore the Minister enough to halt this deeply flawed and potentially dangerous situation and to listen to those whose lives will be shaped and limited by this legislation - nothing about us, without us.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I welcome the Bill. I particularly welcome the role of the amendment in ending the wardship system and the introduction of a statutory modern framework of supported decision-making for adults based on a functional assessment of capacity. We cannot underestimate the importance of this Bill. We must ensure that the technical procedural amendments allowing the commencement of the 2015 Act are provided for. We must now provide for a functional model of capacity assessment following the 2015 Bill and bring an end to wardship in Ireland.

The Bill will provide an important new system for enduring powers of attorney with a two-stage process. I welcome that the Bill amends definitions of personal welfare and treatment decisions, which will allow for participation by persons with capacity difficulties in health research. It is crucial that people are supported and able to have their voice heard.

Section 59 of the Bill will remove the capacity of an attorney to make treatment decisions for a relevant person. This will avoid any confusion for healthcare professionals as only a decision-making representative or healthcare representative will have the authority to take these decisions. I welcome the provision for expanded decision support services, which will play a vital role in ensuring implementation. This Bill will allow for remuneration of decision-making representatives. It will strengthen the protections for the rights of the wards when their wardship is reviewed and they are discharged from same or migrated to the structures of the Act of 2015.

The Bill also makes provision for the implementation of requirements under the UN Convention on the Rights of Persons with Disabilities along with measures from the 2016 disability Bill. The removal of the reference to cognitive ability from section 52 of the 2015 Act is important as it goes against the broader ethos of the Act and the UN Convention on the Rights of Persons with Disabilities.

The Bill also provides for the Irish Human Rights and Equality Commission to become Ireland's dedicated UN Convention on the Rights of Persons with Disabilities monitoring body. The Bill will provide for a percentage of people with disabilities in the public service to be doubled along with the repeal of certain statutory provisions which will facilitate greater participation in public and civil life for people with disabilities. We know that it is essential to increase the participation of people with disabilities in these services. I welcome that. It is important to listen to the concerns of people with disabilities. I know the Minister of State, Deputy Rabbitte, is very aware of this because I have spoken to her about it recently.

While I am very supportive of the Bill, I have been contacted by some interested bodies who have outlined certain issues they believe need to be addressed. There is an issue of inclusion of persons detained for mental health treatment in this Act. Unless we look at including these persons, they will be specifically excluded from legally binding advanced healthcare directives. They will have no legal rights to have their advance wishes respected, even though they might have had the capacity to make these decisions. This group has been excluded and their legal rights in this regard have been forgotten. We cannot leave any group behind in commencing this important legislation.

I welcome that the Bill makes significant strides in commencing the 2015 Act. We need to look at the exclusion for those who are detained in hospital for mental health treatment who may be excluded from legally binding advance healthcare directives and having their wishes respected. I welcome the Bill. It is important to speak to all stakeholders and listen to their views.

Denise Mitchell (Dublin Bay North, Sinn Fein)
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I welcome the opportunity to speak on this legislation. I commend all stakeholders and advocates who kept it on the Government's agenda. I hope it finally ensures that basic human rights are upheld and respected by the legal systems and institutions that support it. Advocates have raised concerns with this Bill as it stands. Many are worried that the Bill is being rushed. It is important legislation which needs to be done right. The Government runs the risk of not properly considering all aspects of the Bill if it closes its ears and ploughs ahead.

People who are involuntarily detained are being excluded from their legal right to have their advance wishes about treatment respected, even though they had the capacity to make decisions about their mental health care and treatment at the time of making their directive. This is contrary to the UN Convention on the Rights of Persons with Disabilities and international rights standards. The Government needs to amend the Bill to ensure that people detained under Part 4 of the 2001 Act have their rights upheld. This was highlighted at pre-legislative scrutiny of the Bill and was addressed by recommendation 40 of the pre-legislative scrutiny report. I am not sure why the Government has chosen to ignore it.

My colleague, Deputy Ward, intends to submit a number of amendments to the Bill on Committee Stage in order to make it inclusive, equal and most importantly to ensure it is human rights compliant. Sinn Féin supports the long-overdue need to reform how wardships are legislated for in this State.

The Bill provides an opportunity to make Ireland a leader in capacity legislation and to fulfil our obligations under the UN Convention on the Rights of Persons with Disabilities. As it is currently drafted, the Government is set to miss this opportunity by passing a Bill which has obvious flaws.

I hope the Ministers can take on board the observations of Sinn Féin and the stakeholders and seize that opportunity on Committee Stage.

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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People Before Profit largely welcome this legislation. There will be amendments and changes made on Committee Stage and, hopefully, at the end of that process, the legislation will be fit for purpose. This has been seven years or more in the making. Some references, for example, those relating to the lunacy laws, date back 140 years, which shows how antiquated this legislation is.

The more I read the Bill, the more I realise how complicated it is. Legal, moral and ethical questions arise and must be answered. At the heart of the debate is the fact that we need to get away from a paternal approach to healthcare, particularly the aspect of it relating to mental health, and to instead have a person-centred health system where the person is at the centre of decisions that are made.

I welcome the decision around wards of court. Those are complicated situations but taking that decision away from the criminal justice system and moving to a support service is welcome. It will oversee the implementation of this legislation.

I listened intently to the concerns outlined by Deputy Cairns. Those concerns should be taken into account. Some campaigners have said there are serious concerns around persons who are involuntarily detained under the Mental Health Act. Those situations must be taken into account when this legislation is finalised.

There is still a long way to go when we consider where this Bill will end up. My understanding is that the deliberations on it must be finished in the next four weeks. On Committee Stage, there will be many amendments to address some of the issues that have been raised.

I hope that future legislation deals with the issue of voluntary assisted dying. If implemented, it would have consequences with regard to advance health decisions and would allow control and choice to those in that situation. I hope that legislation will be introduced and implemented in this country in the near future.

This is a complicated area of law. I am the first person to say that some of the stuff involved is probably beyond my remit. I am probably not qualified to address some of the issues, but I am a legislator, after all, and have been elected by the people of Dublin Mid-West to have an input and a say. I am a voice for campaigners on this issue. We are a conduit for those people to say there are certain matters about which we have concerns but we hope those concerns can be addressed on Committee Stage. We hope that at the end of that process, the legislation will be fit for purpose.

Richard Boyd Barrett (Dún Laoghaire, People Before Profit Alliance)
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I rushed to the Chamber to speak. I was not planning to do so because Deputy Gino Kenny is our spokesperson in this area. However, I received an email this week that connects to the issues at stake in this Bill. I heard the Justice for Wards group referred to in previous contributions. I recently met representatives of the group outside Leinster House. I had a meeting with a Minister of the previous Government, though I cannot remember who, on the issue. The issue of wards of court is complicated. That meeting with whichever Minister took place quite a number of years ago and was prompted by two people in my area who were in the ward system. It was a young woman who was in the ward system and her guardian. Their particular concern, which was echoed during the protest outside Leinster House and in the email I received, related to the lack of proper oversight of the ward's funds. Commitments had been made over a number of years that the Comptroller and Auditor General would oversee how those funds were being managed but that never happened. Those commitments were made at committee meetings. Various taoisigh said this was going to be done but it never happened.

My first engagement with the issue was in the aftermath of the financial crash when significant losses were made by some of these funds. The point made by the Justice for Wards group and the friends of mine who first drew my attention to the issue was that they were completely in the dark in that regard. The wards had no real say in any of this. Decisions were being taken above their heads by the registrar of the Office of Wards of Court. Those decisions were taken over the heads of the people concerned without any proper consultation. I hear they are also concerned that they have not been properly consulted about this legislation. I do not know the extent to which this Bill impacts on the issues I have raised. I understand that we are doing away with the ward system. What happens with those funds and the properties that are supposed to be managed? How will all that work?

I will say, with my limited understanding of the matter, that those people who emailed me and my friends were very unhappy about their experiences. They felt they were ignored or plámásed. They were told things were going to happen but nothing ever happened. They were always on the outside. In fact, my friends exited the ward system because they were so frustrated and angry at the whole situation.

An email I received concluded by stating it is unconscionable that the State would abandon these vulnerable people for whom it has responsibility and that elderly parents would have to take to the streets to be heard. My correspondent referred to people in this situation who are struggling on disability allowance and who have insufficient means for their needs, which leaves them dependent on elderly parents for financial support, in danger of losing their homes and going into residential care. These are vulnerable people in very difficult circumstances who feel abandoned. They concluded that email by asking for engagement with the Minister. I appeal to the Minister to respond to the representatives of the Justice for Wards group. They know how to present their case far better than I do. I am clear from the conversations, the emails I have received and from my previous discussions with my friends in Dún Laoghaire who have experienced all this that there are big issues to be addressed. Insofar as that may impact on this legislation, I am also aware that the Justice for Wards group feels it should be better consulted about this legislation, more generally.

I reiterate the point that has already been made about concerns relating to mental health reform. People who have been incarcerated under the Mental Health Act are excluded from this legislation. The Bill appears to be doing the right thing in terms of trying to assist people to make their own decisions, which is important.

I like the idea of the DSS. It seems like a good idea. Indeed, some people came to my clinic in the past few weeks who were having extraordinary difficulties because their loved one and family member had fairly advanced Alzheimer's disease. They did not have an enduring power of attorney set up and have had to go through a lot of rigmarole as a result. I found it hard, as did the people in my office, to get answers as to what one has to do and what hoops one has to jump through in order to deal with that situation. We were phoning all sorts of people and the family had been at it for months. In fact, following this debate, I had better check in and see where they are at but it was a pretty complicated, convoluted and difficult process. I hope this legislation will help people in such situations.

The fact that quite a lot of the advocacy groups representing those with disabilities are concerned that this is rushed and that they have not been properly consulted is very worrying. We are going to get things wrong if we do not listen to the people affected, especially in the area of disabilities. We cannot really know all of the difficulties, pitfalls, problems and inadequacies unless we really listen to the people who have to live this. If they are expressing the view that they have not been properly consulted on this legislation and that it is being rushed, then the Government needs to listen to that. It is better to get it right than rush it through. We cannot have a situation where, as is being suggested, a particular cohort of people may be completely excluded from the supports that this Bill is supposed to be providing and be denied their rights under the UNCRPD. I hope that is not what the Government intends to do here, and those concerns need to be addressed.

That is all I have to say. I hope the Minister and Ministers of State are listening to those affected. I am really just acting as a conduit for the experience and concerns expressed by others. The Government has heard those concerns expressed by quite a few Deputies today and I sincerely hope the Minister and Ministers of State are listening.

Éamon Ó Cuív (Galway West, Fianna Fail)
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It is extraordinary that we are dealing in part with 19th century legislation and with the fact that only part of the 2015 Act was implemented. It is frustrating that our ability to update legislation in good time seems to be very limited. Approximately ten years ago, the current Attorney General undertook a massive amount of work in trying to eliminate all pre-1922 legislation from the Statute Book. It is absolutely amazing that there is still legislation from that era. I do not know if there is any left but he had certainly been driving forward the efforts to eliminate it completely. As we see here, we still have a bit left. The writ for pre-Independence legislation, passed by the Parliament in Westminster, still runs in this country. It is not wrong because it was done then but it is dated. When we get to 1922, we need to do another round and look at all of the older legislation to see if it is fit for purpose. When one looks at the terminology, one sees how dated it is.

I remember my first direct experience of assisted decision making. A person came into my office and was very upset that their daughter, who is intellectually disabled, was not able to make decisions for herself even though she very much had her own mind because the 2015 legislation had not been implemented. I utterly agreed with her. It was at that point that I started taking a real interest, albeit not a very detailed interest in the issue. One of the problems with this House is that the hours of the day do not allow one to be totally engaged in every issue that comes in but I am pleased that a Bill is before the Dáil that deals with a lot of the issues here. Maybe it does not deal with all of the issues but at least a Bill is now before the Dáil that will make the 2015 legislation fully effective. We will then be in line with the UNCRPD. It is great that we are putting an end to the wards of court system. I do not think this is something to be decided in court, except in extremis. The day-to-day operation is much better with the DSS.

We must talk about legislation as a dynamic. If in two or three years unforeseen consequences have arisen in the context of this Bill or provisions that are not working, I cannot see why we cannot expedite introducing amending legislation. It is very hard to get it perfect all of the time. Until we actually operate something, it is sometimes impossible to know if there will be unforeseen consequences. It is the actual operation and how it really works for real people on the ground that counts with me. It is not the theory of the law but whether it is good legislation that serves well in practice. I remember reading that the Brehon laws might look very strange but they had one great value, namely, they were respected by the people. The people of those times followed Brehon law because it was their law and was reasonable to them. We need to consider law as a dynamic and not as something that will be in place forever or that has no flaws.

A very valid point was made about decision making for people who are confined under the Mental Health Act. I am sure the Minister or Minister of State will explain the details of why this is not included. This is why we have two Chambers here and why it is good that we did not abolish the Senate. It is good to go through Bills twice in the Houses and tease out issues. Sometimes concerns people raise, because of the intricacies of the law, are found not to be so concerning as originally thought. In other cases, there are real concerns and Bills can be amended. I expect a very robust debate on that issue. I expect that the Committee Stage debate will be quite detailed.

A Minister might decide that there are issues to be dealt with which have much wider ramifications and that we need a third Bill do to that. He or she might determine it is best to get this amount, 80% or 90%, of the issue covered. These are issues that we will all have to listen to in the coming weeks because one thing is certain, this is 100 years too late. In the shorter term, it is seven years too late. There comes a time when one has to get on with what is there while not closing the door to further change. One must consolidate the progress and move forward. Many of us had the experience in this House, including the Leas-Ceann Comhairle, of debating the Official Languages (Amendment) Bill and not being 100% happy with the progress we made. However, we were a lot happier than we would have been had there been no progress. We saw it as a work in progress and not as the final destination. I see this legislation in the same terms. This is a work in progress. We need to keep building on this and building on people's rights. We need to get the balance right. All of us in our constituency work have seen the tricky balances involved in human relationships, in issues of capacity and so on.

I was very impressed when I listened to the director of the DSS on the radio yesterday. She gave a very good explanation of the intricacies of this process. There can be assisted decision making in certain facilities and in other parts of people's lives, they make their own decisions totally. Parts of this are quite subtle. No doubt those who will have the privilege of attending all of the committee meetings - unfortunately, given my schedule, I will not be able to do so - will be able to tease out all of these issues in detail.

I welcome the Bill and I hope it is passed. More importantly, I hope it is fully implemented in an expeditious manner. I also hope that the Minister, Deputy O'Gorman, and Minister of State, Deputy Rabbitte, will give a firm undertaking that if there are further issues to be dealt with, it will not be another seven years before we are back in the House to deal with them.

Thomas Gould (Cork North Central, Sinn Fein)
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As the Minister and the Minister of State will be aware, this Bill has the potential to be really transformative and make Ireland a leader in supporting those who need assisted decision-making. Unfortunately, I do not believe the Bill goes far enough in that regard. We need to do more. I have dealt with major issues in my constituency and nationally in the context of the existing process and how it has failed. We know that there is a need for this Bill, and we want to support it. My colleague, Deputy Ward, will bring forward amendments on Committee Stage. As Deputy Ó Cuív stated, this is something we have waited generations to fix. We all appreciate that.

I acknowledge that is very a complicated area and that a great deal needed to be done to get the Bill to this point. However, an opportunity has been missed. We could have gone further. We need to listen to the stakeholders, we need to take on board what they say and we need to include them. These are the people on the front line. They are dealing with the issues and they have a better understanding of what legal changes we need to bring into being with the Bill.

My colleague, Deputy Ward, and Sinn Féin, will bring forward amendments to improve the Bill and will work constructively with the Government. We will do our very best. Having listened to previous speakers, the tone is that we want to get the Bill right. People want to work together to try to achieve that.

Unfortunately, successive Governments have failed those with disabilities. We have seen that with children not being able to access therapies. We have seen it when people with disabilities have not been able to access suitable housing. We have seen it - in the discussions only yesterday and today - with people not able to afford adaptation work because the grants are not sufficient. People with disabilities need to be listened to.

We also need the Government to implement fully the UNCRPD, which would see vital infrastructure put in place to protect those with disabilities and improve their quality of life. There is so much we can do and that we need to do, to ensure that every citizen has the entitlements they deserve. Sinn Féin believes that we need to build a society of equals and diversity: a society where disabled people are supported within our communities where possible, and where everyone is given a fair chance.

This Bill can be a step forward. We want it to be a massive step forward in creating a society where, instead of missing opportunities, people will get a chance if we support them. I urge the Government to listen to what has been said today by Deputies, listen to the advocacy groups and approve this Bill. We know that we can do better, but we also know this Bill is needed.

Cathal Berry (Kildare South, Independent)
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I thank the Minister for his detailed opening statement, which was very helpful. I thank the Minister, the Minister of State and their staff for the detailed briefing we received yesterday, which was very useful. I only wish that the opposition spokespeople would get more such briefings on other topics. Perhaps the Minister and Minister of State could raise this with their Government and Cabinet colleagues. We found yesterday very helpful.

I welcome the Bill and I am happy to support it. I recognise the very tight timelines under which we are operating. I appreciate that if the Bill is not passed by the end of June, it could cause complications and challenges downstream as well. I fully recognise that.

I echo some of the comments that have already been made regarding an actual or perceived lack of engagement with advocacy groups. While the timelines are tight, it would be very helpful if the Minister or Minister of State could indicate that they are happy to engage further with advocacy groups, if that would possibly spirit this process along.

My second reason for supporting the Bill is because I recognise its special significance. This is an historic Bill. I am glad other Deputies have also said that. The Bill will abolish and overturn law that is more than 150 years old, which predates even the establishment of the State. It will completely outlaw the ward of court practice and confine it to the history books, which is exactly where it belongs. It is probably worth mentioning that when the ward of court system came in, it was probably well intentioned at the time based on standards at the time. Obviously, it has no place in modern Ireland and is no longer fit for purpose. It is good that we are finally getting rid of it.

The third reason for my support of the Bill is a point about the Bill that I like: not only is it repealing an unnecessary law, it is actually replacing it with something better, which is good. I absolutely agree that the functional assessment approach is much better than a black and white all-or-nothing approach. I agree with the two-step power of attorney. This is international best practice. It is a good process. If a person is likely to lose capacity he or she can be registered with the DSS in the first instance and can then be further referred if capacity is diminished or lost. This is a good way to go.

The Bill will help in the implementation of the UNCRPD. The Minister and the Minister of State will be aware that we are not there yet and that there is a lot more work to do. The Bill does indicate progress. As a famous person once said that it is better to be moving very slowly in the right direction than very quickly in the wrong one. At least we are moving in the right direction, but a lot more work is required from that perspective.

I agree with the principle that the legislation moves us away from the best-interests model, which is very patriarchal, and towards a model that respects the preferences and the will of the patient. That is a very solid principle and model on which to approach it. I have one question, however, and perhaps the Minister or Minister of State would kindly answer. I am not sure whether this was covered yesterday during the briefing. Could the Minister or Minister of State indicate how many wards of court there are in Ireland? This would just give us a sense of the scale of the issue. It may be a couple of hundred, but it may be more. Perhaps we could get an approximate figure on that so it would help in our understanding.

Roderic O'Gorman (Dublin West, Green Party)
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There are 2,000.

Cathal Berry (Kildare South, Independent)
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I welcome the Bill. We all appreciate that it is long overdue. I look forward to its very swift implementation. I am very grateful for the opportunity to play a very small part in ending a practice that no longer has a role in modern Ireland. It is a practice that should be confined to the history books where it certainly belongs.

Matt Shanahan (Waterford, Independent)
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The Assisted Decision-Making (Capacity) (Amendment) Bill 2022 is complex legislation designed to amend the Assisted Decision-Making (Capacity) Act 2015. Essentially, the Bill proposes to bring an end to wardship in Ireland, which is most welcome. Many of us will be aware of the historic, and perhaps also the contemporary, nature of wards of court, where young adults were incarcerated in institutions oftentimes for a large duration of their lives and without any assessment of their own thoughts or feelings, or their ability to function or act independently in wider society. Anything that sets this aside is to be welcomed.

The Bill also appears to propose replacing that system with an assessment system based on a functional approach, that being where capacity is presumed and where the burden of proof legally rests on rebutting that assumption. This must be teased out through the course of it. I know that the Minister hopes the legislation will give people experiencing diminished capacity the opportunity to participate more equally and meaningfully in our society and ensure that they have greater power to direct their own lives in an independent and dignified manner. It would be very hard for any of us to say we would not be supportive of legislation that could deliver that. In order to achieve this, the Minister and the Minister of State are proposing a series of tiered decision-making supports that will assist in arriving at best outcomes for the clients involved. Indeed, reference was made to Ireland's clear obligation under the UNCRPD, and that we must abolish wardship. Enacting this Bill will allow for the DSS to operate. The DSS will oversee the different tiers of support under the legislation.

The Minister said it will be its responsibility to make these supports available to those who need them and is proposing to give it a supervisory and safeguarding role in such arrangements. It seems this DSS will have significant powers. It will be allowed to draw up its own administrative procedures involving informal complaints procedures without the requirement of going to the courts. In addition, it will have a reporting function. These are heavy statutory provisions and the Government has gone to extreme lengths to ensure these will be safeguarded and operationalised.

The Bill also proposes to deliver a new system for creating enduring power of attorney. The Government is proposing a two-tier system where a person may register their wish to create a power of attorney with the DSS while they have full use of their mental faculties. If and when an individual loses mental capacity, their legal representatives will be able to contact the DSS to enact such power of attorney status, subject to the usual medical and legal safeguards. This is to be welcomed. Does it also extend to people who are not disabled? Can this provision be widened to apply to the public at large? I also welcome the additional effort to improve employee participation in the public sector by increasing public sector employment of people with disabilities to 6%. This is a very progressive move.

On balance, the Government is trying to deliver progressive legislation but I have to add my concerns to those that have been voiced already. They largely relate to the amount of communication and interaction with disability groups to understand their fears and sensitivities and to ensure the schemes proposed meet with their approval. In advance of amendments to this legislation being tabled, I urge the Minister to reach out to such representative groups and bodies and deal with their concerns before any legislation is passed or enacted. The purpose of this legislation, as the Minister has outlined, is to significantly improve the equality situation for those with some degree of disability. How can it hurt to listen to and deal with these groups' concerns? Doing so could and should make for better legislation. Nobody in this House wishes to be dealing with the effects of bad law. We have had many examples of that over the past decades. I acknowledge what the Government is trying to achieve with this Bill, which is to be welcomed, but my concerns relate to those for whom this legislation is being proposed. They must feel they have been fully engaged regarding it.

Jim O'Callaghan (Dublin Bay South, Fianna Fail)
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I commend the Minister and Minister of State on bringing forward this very important legislation. I am sure they would agree it is embarrassing that in Ireland today, people still have to make applications under the Lunacy Regulation (Ireland) Act 1871. As Deputy Berry indicated a few moments ago, that legislation is 150 years old. Notwithstanding the archaic language within that legislation, if people find themselves in a situation where a loved one or close family member requires protection, they still have to make an application under the wardship system. Every person who is aware of or interested in this issue should have it at the forefront of their mind. As we now live in a much healthier society and people are living longer, it is important that we prepare for the lengthier lives of those close to us.

The most important thing to do is ensure those individuals, before they lose capacity or get too elderly, put in place a power of attorney. That way, if they lose their capacity, persons close to them or persons they trust will be in a position to make important decisions on their behalf for the remaining years of their lives. Unfortunately, on many occasions, that is not done. As a result, family members find themselves in a situation where they cannot gain access to a mother's or grandmother's bank account in order to pay for the upkeep of that mother or grandmother, and they cannot make any decisions in respect of the care or medical treatment of that elderly person because they do not have the appropriate legal responsibility for them. If they find themselves in that unfortunate position, the only option available to them is to go through the lengthy, costly and unfortunately necessary process of making an application to the High Court seeking to have the person lacking capacity made a ward of court. This legislation is very welcome as it will take us away from that old and archaic system.

Under the legislation that was enacted in 2015 - some seven years ago - but has not been commenced, there will have to be a large number of applications made to the court in respect of people who are at present under the wardship system. Under section 54 of the 2015 Act, which has not yet been commenced, there is a requirement that the wardship court shall, within three years of the date of commencement of that part of the Act, make a declaration under section 55(1) in respect of a ward who is 18 years or older by that date. As I am sure the Minister is aware, that will give rise to a significant amount of work in the courts, predominately within the High Court. I do not have exact numbers for how many wardships there are at present but I know from work I did on the justice committee of the previous Dáil that as of 2015 there were approximately 2,000 wards in Ireland and since then we have added more than 2,000 more. Of course, some of those individuals will have died and so the numbers will not be at that full level but a very large number of applications will certainly have to be made under section 54 of the 2015 Act when it comes into operation. The Minister needs to take into account how to deal with that.

The courts need resources in order to ensure these important applications, which require very significant evidence to be put before the court, are considered carefully by it. I ask the Minister to engage with the Attorney General to determine how those lists will be dealt with because they will take up a huge amount of court time. However, that is not the primary issue. The primary issue is that the people whose applications are being made, or on whose behalf applications are being made, need to have those applications dealt with promptly. The last thing we want is for them to be delayed because of delays in the court system. At present people still have to go through an unusual application. They have to get affidavit evidence and the application is made to the president of the High Court. It is a very confusing system for the families making the application because it is alien to them and they do not feel they have an understanding of it.

One of the trends of modern legislation is that we delegate away from the courts issues in respect of decision-making matters that the courts previously held responsibility for. It is welcome that we are going to have this statutory body that will make important decisions on behalf of people who lack capacity. I also welcome the other aspects of the legislation which ensure the rights of people with disabilities are fully recognised. The Minister has added on to this legislation a provision for the selection of jurors under the Juries Act 1976. People will be able to play their role on juries notwithstanding the fact that they are deaf. If they are able to comprehend evidence with the assistance of a person proficient in sign language, there is no reason they should not be entitled to serve their civic function by being a member of a jury. The legislation also seeks to repeal section 41(i) of the Electoral Act 1992 to remove the bar on a person of unsound mind being a Member of Dáil Éireann. This is important as it takes away language which, although not as archaic as the 19th century language of the lunatic, is still not appropriate to have on our Statute Book. We have to move ourselves away from such judgment-heavy language.

I commend both the Minister and Minister of State on the legislation. We need to bring to this legislation the energy they have brought to date. It is unacceptable not only that section 15 of the 1871 legislation is still in place but that the Houses of the Oireachtas passed legislation in 2015 that has still not been commenced. We should not have to wait seven years before legislation is commenced. Due to that delay, there is now a requirement to amend parts of that legislation.

I urge the Minister to ensure he can get the Bill before committee as quickly as possible and, at the same time, try to ensure that when we get it enacted and commenced, we will have an efficient system of having those applications dealt with by the court.

Martin Browne (Tipperary, Sinn Fein)
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Sinn Féin realises that the way in which wardships of court operate needs to be reformed, but the manner in which the Bill is being brought forward, with particularly tight timeframes, goes against the spirit of the UN Convention on the Rights of Persons with Disabilities. Under Article 4.3 of the convention, disabled people have a right to be consulted on policy and on the laws that affect them, yet the amending Bill was published just the day before yesterday for debate today and tomorrow on Second Stage, with amendments due by 8 June. That is hardly an acceptable way of ensuring the Bill will be analysed properly, with suitable amendments thought through and submitted. Even the committee had very tight timeframes for producing its pre-legislative scrutiny report. For legislation as important and far-reaching as this, the Department’s rushed approach is an affront to those who will be directly affected by the measures contained within. There are also issues with accessibility in terms of how relevant material has not been produced in easy-to-read or accessible formats. It is not a good start to realising the ambitions of this legislation and our obligations under the UN convention. Furthermore, the decision support service is expected to be operational on 20 June despite these delays. I just do not see how that date will be met.

Advocates do not want to delay the commencement of the Bill but important amendments are needed. Many stakeholders have highlighted how people involuntarily detained under the Mental Health Act 2001 will be excluded from the provisions of this legislation. No other group of individuals are specifically excluded from this legal right. This conflicts with international human rights standards, including the UN convention. That people with mental health disabilities will be excluded from the Bill must be dealt with and Sinn Féin intends to bring forward amendments to deal with this omission. It is also very concerning that the Bill will not extend any of the Act's advantages to people aged 16 and 17.

As a party, we are very supportive of reform of the exclusionary nature of wardships of court but a number of matters, some of which I have referred to, need amending. While very little time is being given to us to do this, we will submit amendments to ensure the Act will fulfil our obligations under the UN convention, and that it will be inclusive and human rights compliant and will live up to our commitment to equality. Article 12 of the UN convention provides that “[s]tates Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.” Providing little to no time to analyse and address the deficiencies in the Bill is not in the spirit of those obligations.

Michael Collins (Cork South West, Independent)
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The original Assisted Decision-Making (Capacity) Act 2015 was signed into law on 30 December 2015. The Act applies to everyone and is relevant to all health and social care services. It relates to supporting decision-making and maximising a person’s capacity to make decisions. However, it will not be commenced until June 2022, almost seven years after it was signed into law, because the systems required to implement it were not put in place.

We all know people who have had an accident, a stroke or a heart attack. They may have had no plan in place for a decision to be made on their behalf and have had no one appointed to make decisions for them in case they became unable to communicate. If they do have someone appointed, that person will know the person’s wishes and what he or she would have liked to be carried out after having been struck down with some serious illness. In some cases, however, families do not want the hassle of having to help take care of the family member. Moreover, there can be financial reasons the family would not like the relative to be kept alive, and they might not want any of their relative's money going to waste. Instead, in some cases, the family would prefer to make the decision to end the relative's life. That does not bode well for the member who has been incapacitated. Sometimes it falls on friends to advise the family of the person who has been incapacitated, which in itself can cause friction and unnecessary bitterness.

Another issue arises where a will has been made and the incapacitated person has been coerced into signing one that is, in fact, at odds with what the person wants. If an incapacitated person would rather be in a certain hospital, nursing home or community hospital, that too should be taken into consideration. People who have been left in an incapacitated state are extremely vulnerable to the immediate people around them, and they must at all times be protected and their wishes must always be the priority. Over the years, I have heard of and seen many elderly people being coerced into making wills and then, once everything has been signed over, no one remains to take care of them. I have heard of people taking farms and land from incapacitated people and also of families wishing their incapacitated family member were dead because the cost was too much. It was not that the family were using any of their own money but that they did not want the incapacitated person's money to be spent on any medical care such as a nursing home or a community hospital.

Today, if a person loses capacity, such as by acquiring a brain injury, the HSE could apply to have that person made a ward of court. Two committees would then be appointed, one to look after the person and the other to look after his or her property, which will often contain a compensation award. Thankfully, under the Bill, it will be possible for a person to specify what decisions he or she would like to be made about his or her person, property or both in the event of losing capacity via an enduring power of attorney, EPA, and an advance healthcare directive, AHD. In the event a person does not have an EPA or an AHD and loses the capacity to make decisions, supports can be put in place, depending on the severity of the capacity loss and the degree of support needed. A decision-making assistant, a co-decision maker or a decision-making representative could be appointed. That person may be, but does not have to be, a next of kin. It will be done via a court application to be made a decision-making representative, or by signing an agreement with the appointer to be made a decision-making assistant or co-decision maker, and then registering that agreement with the decision support service, DSS. If the relevant person does not have anyone who could or would step in to one of these roles, the courts can make a decision for the relevant person or choose a decision-making representative from persons nominated by the director of the DSS.

Richard O'Donoghue (Limerick County, Independent)
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The Bill is very welcome in order that vulnerable adults can be cared for in their decision-making process. The original Act was very difficult for families to navigate to support their vulnerable family members. The Bill will ensure vulnerable adults are protected from coercion and abuse when making important decisions. I welcome, in particular, that a person's previous preferences will be considered, while the views of individuals named by the person will also be taken into account. This is designed to support them. I welcome also the appointment of a decision-making assistant agreement, which will allow someone to designate a trusted person as his or her assistant.

In the past month, I have been contacted by the owners of a number of long-term care facilities who are very upset that their service users are being put in undue distress due to the banking protocol. People in an intellectual disability setting who are in the care of the State have received letters from the Department of Social Protection. The letters stated their payments were at the time being made into an Ulster Bank account and that they were required to open an account with another bank. They currently have bank accounts with which they bank compliantly. These service users now must get passports and proof of address even if they have never left the country. They are entitled to income benefits as citizens of the State. They now need someone to accompany them to get a passport, which removes their autonomy and requires them to sign forms they know nothing about. The banks have got away with so much as they say goodbye to the vulnerable.

A number of my constituents recently visited bank branches, in line with their fathers' and mothers' wishes, as appointed signatories on their accounts and were told they would have to make their parents wards of court. This led to great distress for the families, and I am glad the Bill will address such scenarios happening in the future.

I welcome the Bill. For far too long, the banks have caused an awful lot of problems in this context. I have been contacted by people who for years have been looking after their parents' accounts after their parents started to show early signs of dementia.

They went in and asked the bank's advice on what to do. They were told they were a co-signatory, that that was all they had to do and that they could work away. Now with the banking protocol we have people apologising and saying the person is now a ward of court. There was misinformation given to people by the banks. I do not blame the bank staff. I blame the top shelf in the banking sector for not informing staff about how to deal with this, making sure they were compliant and giving proper advice to people who were caring for a person. That is where the buck lies here. It is true the Government is doing something now to try to protect this going forward but how many thousands of people went to the banks asking what they should do with people in a vulnerable state? They knew themselves they needed a person they could trust. How many families went as a unit and asked the same thing and awarded somebody within their family to care for the person? They might have lived in a different part of the country and so asked a brother, sister, aunt or somebody to look after the person. They went to the bank with them and asked what they needed to do. Those in the bank told them all they needed to do was to be a signatory. It is the banks that are wrong here and, as I have stated, not their staff. They should have got the proper information to give to people but they did not. It is another issue this Dáil and Government must clean up to help people, which I welcome. However, we must ensure the banks are also held accountable because there is no accountability on the top shelf. They seem to push the blame down the line in their different branches.

I hope the Government holds banks to account and holds to account the high levels of the banking sector for the misinformation it gave to a lot of people throughout this country. We bailed out the banks once and it is now time the banks were accountable for the misinformation they have given the people.

Michael Healy-Rae (Kerry, Independent)
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I am grateful for the opportunity to speak on this strong and weighty legislation that is set to modernise a whole area of law for a very vulnerable sector of our society.

When I talk about people who might be affected by this I like to refer to them as vulnerable or special people who deserve every protection from the State and assistance to their families in protecting them. We heard earlier a very eminent barrister talking about antiquated legislation, which goes back 156 years, that legal people must still refer to when dealing with people's business. That is outrageous. What was right and proper language and terminology to use - I put a question mark on that - 156 years ago could not be said by anybody to be appropriate for use by people going into court today to deal with legal situations. Surely, 156 years later, it is time we as legislators got ourselves in gear and put things in order.

This legislation places the person at the centre with a move from the "best interests" to the "will and preference". It provides for a tiered approach that will move to assisting from making decisions on a person's behalf. Ultimately, the associated Assisted Decision-Making (Capacity) Act is very significant capacity legislation that addresses the long-outdated area of law called wardship. We are all well aware of wards of court and what that means but updating that, modernising it and ensuring it is fit for purpose is a very important role in which we must all play our part and support the Government in doing.

The Act sets out in detail how this whole process of inclusion should unfold and recognises the situations where a person can make decisions for him or herself but may also require support from family members or other trusted individuals who ultimately would be best charged to take care of that special person's needs. A person in this situation can enter a decision-making assistance agreement. This allows individuals to appoint a trusted person as an assistant, be that a family member or a friend. The assistant would help by giving advice and support to the appointer when making decisions about his or her welfare. These decisions would be seen as the appointer's decisions. Assistants would help in expressing the interests of the appointer and would ensure the decisions were implemented. The autonomy of the appointer is paramount.

There is another aspect to this. It is easy for us to be smart when the horse has bolted. I refer to the issue of people giving power to others when they are making wills and dealing with the ultimate decisions everyone must make at some stage in their lives. Again, Government should be always encouraging people. We see public advertisements being taken out and there is the Law Society and people like that. Rightly, these encourage people to make a will. People put an awful lot of effort into living but they do not think much about the ultimate act every one of us is going to do in this world, and that is the act of dying. We want to ensure people at that stage have things in order. Having given a person the power of attorney in situations like that would help with limited capacity, etc. Every one of us in our role as public representatives and through our clinics has seen what I call the horror stories. Those are where a perfectly healthy man, woman or younger person becomes incapacitated through accident or illness and, to be blunt about it, everything is in an absolute and complete mess because no systems are put in place. It might be the simplest thing in the world like paying a bill but it may be that bill cannot be paid because there is a bank account with one person's name on it and nothing can be done about the very basics of running the house or running the show because the money is locked up and no systems were put in place. I strongly advise, therefore, as would any person who is thinking straight about these matters, that when a person is making a will and dealing with the future, he or she should also think seriously about giving power of attorney to one or two persons who would work in his or her best interests.

The 2015 Act aimed to introduce a new protection regime and new legal framework for supported decision-making for vulnerable adults with a rights-based approach to decision-making capacity. We know what is going to happen with the current regime. Wardship will remain in place until the Bill is enacted into law and will continue to exist for a further period of three years. We must ensure we have everything done right on this and that we all support each other in this very important matter.

Danny Healy-Rae (Kerry, Independent)
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I am glad to get the opportunity to talk about the important Bill before us. My only worry is the length of time allowed to put in amendments. Even though the Bill has been discussed for many years it is now upon us and we must deal with it. We will do so but it is only as the Bill progresses through these Houses and when we see the amendments that we will make the ultimate decisions about what the Bill will look like when the work is completed.

As I said, the changes the Bill proposes to bring about have been discussed for many years. The Assisted Decision-Making (Capacity) 2015 Act aimed to introduce a new protection regime and new legal framework for supported decision-making for vulnerable adults with a rights-based approach to decision-making capacity. We all know people, even young people, for whom something goes wrong with the most important part of them, which is the top shelf. Some may have an accident, elderly people may have a stroke and there is also those who have dementia.

I know of one case where dementia set in within the space of two weeks. Everything was left up in a heap for that family. Deputy Michael Healy-Rae referred to the power of attorney, but who thinks of doing that? People do not think of giving somebody the power of attorney when they go to make a will. There is much talk about making wills and we have been getting advice about that for years, but seldom have we heard of people being advised to give power of attorney to a family member or a friend in case some of these life-changing illnesses occur.

There are instances where, due to stroke or dementia, a farmer is in a nursing home. He does not know where he is, and he could live there for four, six, eight or even in some cases 11 years. The farm payments to keep the farm going are jeopardised, as are the grants and so forth that are depended on to put food on the table. The cattle cannot be sold. The herd number and the whole lot are up in a heap. It is very important that this Bill emphasises that the power of attorney should be availed of by people of all ages, but especially after mid-life. We all know there are accidents of every type on the road. The soundest people end up in a very bad way and they leave things for the family in a bad way too.

Under this amendment Bill, the current substituted decision-making under wardship will be replaced by assisted decision-making and will be based on an adult's ability to make a specific decision at a specific time. Then there are cases where people get better. As the saying goes, they come back from a very bad state, so we must cater for that as well and ensure that people can take back control of their own business if they recover. I know of somebody who was unconscious and given over for dead for more than 12 months. That person has woken up. He is a young fellow of 21 or 22 years of age who was hit by a car. He woke up the other day and his first words were: "I love you, Mam". We must cater for those types of decisions as well to ensure that those people get their rights.

We will all play our part and table amendments if we see they are needed. We will support or oppose amendments as they are dealt with. We propose to work with the Minister of State.

Fergus O'Dowd (Louth, Fine Gael)
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This is a very important debate. I welcome the Minister of State, Deputy Rabbitte. I support much of what she says and does, particularly regarding the Brandon report which will be discussed by the committee tomorrow. We need more change. We are not getting enough of it. We need more Ministers like the Minister of State in the Government, and I laud her for what she is doing. That is a fact.

It is also a fact that from 2016 to 2020 almost 16,000 people aged over 65 years were abused, and it was reported to the HSE. The numbers are appalling, disgraceful and shameful. I challenge anybody to deny the truth of what I am going to say. If they were children who had been abused, there would be tribunals and prosecutions. The Minister would leave office and there would be absolute war about it. What we do not have in this country is enough concern about things that concern the Minister of State, me and other Members of the House. We need legislative change and we need Ministers with guts who will act on the truth of a statement that I gave to the Minister for Health not so long ago. I told him that one of two medical people told me that what happened in a nursing home in Dundalk was something that he never believed could happen, not only in Ireland but in this century. What has happened? I have heard nothing from the Minister for Health since. What is happening with the inquiry into the deaths of those who died in places such as Dealgan House Nursing Home in Drumcar? What about the Care Champions standing up for people in nursing homes where appalling care and treatment has been given to those people? What about Kilbrew Nursing Home where an elderly man was found with an infected wound on his face? It was infected with maggots because it had not been cleaned. What did the HSE and HIQA do? They said the nursing home could continue to run for another year or so.

These issues are not acceptable; they are not good enough. I accept this legislation is about protecting people, and I support that. It is about giving them rights, but what about when their rights are taken away from them and the Minister will not act on it? This Government has refused to look at the deaths in nursing homes that are of serious concern for many people in our community. These families need closure and they are not getting it.

What is happening in the HSE? A whistleblower made an allegation in 2020 about the care of patients in St. Mary's Hospital, Phoenix Park. I had to table a parliamentary question about it. The answer from the interim national director is as follows:

The Health Service Executive (HSE) has been requested to reply directly to you in the context of the above parliamentary question, which you submitted to the Minister for response.

The investigation team for this protected disclosure have now submitted a draft report to me as the commissioner of the investigation. The draft report is sizable and complex and I am now taking due time to consider it before accepting it as finalised. ... I will seek to balance the need for expediency and assurance as to the quality of the report.

What the hell is going on? This is a report commissioned by the HSE. It remains unpublished. It appears to me, and I hope I can be contradicted on this, to be challenged by the HSE in respect of the veracity of it, the quality of it and the people who suffered as a result of what the whistleblower thought was going on there.

There is a massive need for change. The campaign is led by many good people in our society. I praise Patricia Rickard Clarke for her eminent clarity in her work and commitment to bring about change, and to force us in this House to ensure that this legislation passes but is also made stronger. The responsibility is broader. It is much broader than this legislation ensures. What is going on in the care of older people is shameful. It is shameful that we do not hold them in same esteem in this country.

I am an older person but I do not have any particular evidence of discrimination against me, apart from the fact that a lot of people do not vote for me, although some people do. However, there is ageism in our society and I believe there is ageism in the Department of Health. I believe it is ageism that is saying "No" to an inquiry into these deaths, saying "No" to an inquiry into Dealgan House Nursing Home, saying "No" to the Care Champions and now saying "No" to publishing this report, which is of great seriousness and concern for all of us. The Minister of State stuck her neck out on the Brandon report. She made statements that are true, and she must be supported on this. I return to my point: where are the champions in this House? Why do I have to speak like this at this time of the day? A Minister for Health should be at the front of this, should be fighting for change and should be vindicating the rights of people. Clearly, that is not now going to happen. However, I hope my contribution today will prompt a response from the Minister for Health to this issue.

Why do we need this change? We need it because people are living longer and they need greater care. The Minister of State at the Department of Health, Deputy Butler, and I discussed last week the care of people in their homes, the integrity of keeping people in their homes where they have lived all their lives and supporting them. I acknowledge the work she is doing on behalf of older people in terms of bringing forward new supports and extra additional home care hours to look after those vulnerable people. However, we are still not doing enough. My office is in contact with the HSE every day trying to get care for people who cannot get it.

It is not that the money is not there; it is that the work carers do is not valued or paid enough. It should be a rewarding career. I have no problem with privatisation of lots of things, but this sector is being privatised. I know from my experience in public life that for many years the home care assistant, the healthcare employee and the HSE employee, who had a lifetime of dedication to his or her work, would always be available and willing to help. That system changed and is now gone. In many cases older people and people with disabilities are left on their own to suffer in silence and in pain, while we Deputies bang our heads against the wall of the system to try to get carers into these settings.

We need root-and-branch reform for the credibility of our society. We should judge our society by how we treat the young and the old, as we come into this world and as we leave it. As we come into the world, we have tremendously improved health services; as we get older, however, the services are not good enough and are not acceptable. We need change. I stand for change. I will not put up with this any longer because I am fed up of raising it with people and of talking about Dealgan House and what will happen there. Nothing is happening and that is not acceptable. There is clear evidence that an inquiry into it is needed. It is crystal clear to me. Let us have that inquiry.

Catherine Connolly (Galway West, Independent)
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I welcome the opportunity to speak on the Bill and welcome the fact that I have time to do so. It is the first time there has been time to consider the Bill. It was published on Monday and we are discussing it today. The note we got from the Oireachtas Library today points out that its staff did not have enough time to devote to the Bill. Let us place this in perspective. The 2015 Bill represented a seismic change, in theory. We are talking about two Acts from the 19th century. One is the Marriage of Lunatics Act 1811, which, the Minister tells us in the note we got, was repealed in February 2021, I think. It took 210 years to repeal that legislation. The other legislation is the 1871 Act, which was done away with by the 2015 Act after 144 years - but not really, because that Act was never brought into operation. Now, therefore, 151 years later, we are repealing the 1871 Act. I say that to put this in context.

Then a Bill is published on Monday and we are supposed to work through it. My background is becoming increasingly more distant to me because I packed it in in 2016. Even then I was no expert on statutory interpretation; I had a different area of expertise. We are now presented with almost 70 pages of an amending Bill, in three Parts and 87 sections, to amend an Act that never came into operation. We are talking about vulnerable people who may lack capacity, but the real question that is raised is where the lack of capacity is. I have often said to the Minister of State, Deputy Rabbitte, that she has inherited a situation. I pay respect to her bona fides, but here we are now rushing through something after, I think, 210 years and 151 years, and suddenly we have to pass this Bill very quickly without really any discussion. That is an impossibility. I simply cannot do that job as a parliamentarian, with the best will in the world. Even with my background, I still do not understand quite a lot of this because I need the Act we never enacted or implemented before me as well as this Bill, going between the two.

The system that has been set up to do this is the cross-party committee. It produced a report, which I took the trouble to read. Like the Library & Research Service, the committee said it did not have enough time. It makes its recommendations with that caveat. Its consultation process happened over Christmas, and the meaningful consultations it should have had did not really happen. Then it makes 64 recommendations and identifies eight issues. I pay tribute to the committee. I look to see if the recommendations and the eight issues are being implemented and have been taken on board. I turn to the Library and consult its Bill digest and I look to see which of the recommendations have been implemented. Again, I pay tribute to the Library & Research Service. In short, the digest tells us that, of the 64 recommendations, 34 have not been accepted or implemented in the Bill at this point. In respect of 18 of them, the impact of a key issue is not clear within the Bill or insufficient information is available to the Library & Research Service to make an assessment and, therefore, it cannot help us. In respect of seven of the recommendations, the Bill may be described as adopting an approach consistent with the key issue. In respect of four, a key issue has clearly been accepted. Therefore, out of 64 recommendations, the Bill digest tells us that four have been clearly accepted. Over half the cross-party committee's recommendations have been ignored and only four have been incorporated into the Bill.

I do not wish to be negative. I realise the seismic change the 2015 Act represented. I pay tribute to the officials involved. This is a complex matter. I have no hesitation in saying that. My difficulty arises from the ramming through of the Bill at this point, after all these years, without proper consultation. It is not just me saying that; the committee that did the pre-legislative scrutiny of the heads of the Bill tells us that it did not have enough time and has serious concerns.

We are dealing with wards of court here; it is unclear how many. Áine Flynn, director of the Decision Support Service, DSS, said in December 2021 that almost 2,000 persons have been declared wards of court since the 2015 Act was enacted. We have the 2015 Act with its seismic change and clear recognition that the treatment of wards of court, under terrible 19th-century lunacy legislation, was totally inappropriate and was not allowing this country to comply with our legal obligations under any of the international instruments. We then brought in the Act but did not implement it. Between that time and the time of the heads of the Bill, we did not interact with any disability group on the ground either to find out what the inadequacies of the 2015 Bill were or why it was not enacted. I repeatedly asked questions through my colleagues who work with me in my office, such as when this would be enacted, when the DSS was set up and so on. We kept up the pressure as best we could.

Now we come to this Bill. I thank the Minister of State for the briefing yesterday, which was somewhat helpful. She also gave us a briefing note stating that the urgency was a constitutional challenge. I asked about the nature of the challenge, not about its details. I realise the sensitivity of this. I did, however, ask where the urgency came from. Was the case due to be heard? When were the proceedings initiated? The Minister of State gave me a note stating that in December 2019 a constitutional challenge was taken by an individual against the Government in respect of both the Marriage of Lunatics Act 1811 and the Lunacy Regulation (Ireland) Act 1871, which underpins wardship in the State. I take from that note that the proceedings were initiated in 2019 against the 19th-century legislation, which is completely unacceptable on every level. I get an inkling of where the impetus to change came from. The Department of Justice of the time was not a proactive one, but there was a legal challenge. The Minister of State can correct me if I am wrong, but the Government has conceded, I understand, that it will have no chance of defending this case. It has conceded.

The Minister of State has given a commitment to counsel for the plaintiff - she can correct me if I am wrong - in regard to this legislation being enacted in June. What I do not understand is why it is June, without proper consultation. Was the case due to be heard in June or July? Why is there secrecy surrounding this? At the very least, we need openness and accountability. It is interesting that there is no mention in the speech of the Minister of State, Deputy Rabbitte, today of that case being the impetus for the change in legislation. Parallel to that, she tells us that a lot of the organisations have put in huge work, which I appreciate - the Health Service Executive, the banks and the various organisations that will be impacted by it. They were led to believe it would be June so, therefore, magically, it has to be June. I do not diminish the work that has been done, but what really concerns me is that the same effort and recognition has not gone in to the people on the ground who know best about this area. I am no expert on this but I am able to identify problems and concerns and I have a lot of them. I have no idea why extra emphasis is put on the amount of preparation that the banks, credit unions or housing officials have put in, as opposed to the people on the ground. Could the Minister of State tell us what is the urgency for June, after we have waited 347 years combined, when we put the two together? I am being disingenuous. We have waited from 1811 to 2021 and from 1871 onwards. How do we get this right in terms of what has happened?

In the meantime, I am told that other countries have moved on. This is courtesy of NUI Galway, which tells us that the centre for disability law and policy - I tend to listen to an organisation like that, as well as the other organisations that represent people with the spectrum of disabilities - have serious concerns in regard to the Bill. It also raises the constitutional challenge and the significance of that being tied in with an arbitrary date in June. It tells us that the Bill does not address the problem. I tried my best but I would be misleading the Minister of State if I said I discovered these concerns. I just did not have the time. It took me ages to read all of this, and I went back and read a document from 2017 produced by the Oireachtas Library & Research service, which asked how the Assisted Decision-Making (Capacity) Act would work. It will never work, because we are never going to enact it. That was May 2017, two years after the Bill was enacted. We were told it was a seismic change, a paradigm shift, a cultural shift and so on but the provisions were never enacted. The question must be asked: in God's name why was it not enacted? What happened between 2015 and 2022, when we are now faced with an arbitrary decision regarding June? The centre for disability law and policy has set out its concerns. I have numbered them and there seems to be at least 11 or 12 genuinely serious concerns.

The Bill does not address some major flaws in the original Assisted Decision-Making (Capacity) Act, although we have been told that this is the opportunity to do so. It was understood that they were to be addressed. It was pointed out that if someone makes an advance healthcare directive under the 2015 Act, stating that he or she does not want medical treatment, that will not be binding for a person detained under the Mental Health Act. In fairness to the Minister of State, she said yesterday that she accepts that, but it will not be in this Bill, as it must be under the reforming mental health legislation. I am not sure, but I accept what she says to me in that regard. It is a glaring gap, however.

Another glaring gap is that the Bill does not extend the advantage to people aged 16 and 17. A further glaring gap is that it does not remove the reference to the deleterious effect on the unborn, despite the repeal of the eighth amendment. I note that the Minister of State will bring forward an amendment, which I welcome, but it begs the question as to why that was in the Bill, given that we are talking about 2015 and 2022.

The functional test of mental capacity, which has been deemed a human rights violation by the UN Committee on the Rights of Persons with Disabilities, still remains in the Bill. We are told that the Act as it stands is not compliant with Article 12 of the UN Convention on the Rights of Persons with Disabilities, because it allows an individual's legal capacity to be based on an assessment of his or her mental capacity. It still has the substituted decision-making process, which as I understand is against the UN and what was set out in its explanatory memorandum and direction. It makes it difficult for people to access a new support they would like. I welcome the two-tier system in regard to the enduring powers of attorney. What I do not welcome is that there is now a parallel process where a person must make an advance healthcare directive entirely separate to the enduring powers of attorney. The system has been made more difficult and more bureaucratic. There has been a call for that to be deleted, which I fully support. The centre has problems with the additional offences. It says they are not necessary. When we spoke about this yesterday, the Minister of State talked about the silence in relation to the restraint as being a positive thing, or at least her advisers did. The centre for disability law and policy does not think it is such a positive thing, and it is asking for it to be specifically stated that restraint is not acceptable.

There are difficulties in relation to juries, although the Minister of State is telling us that it is an improvement. I have not had a chance to check it. At this point, I am simply parroting the concerns of the NUIG centre for disability law and policy. From what I have read, I have the greatest difficulty with the way assessments are to be carried out. However, I welcome the three-tier approach and I welcome the tenor of the Bill in terms of enabling and empowering. We will help somebody to assist him or her to make a decision, then there is a co-decision and the top one is where a decision is made for a person. That should be rare if we are going to go with the spirit of the Bill.

I am not sure about legal aid. It is not clear how that will be available. It is entirely unclear to me how we are going to deal with the number of people who have been declared wards of court. I will outline the total confusion that has been created. I have said on other occasions that we might get a clue from the date - 1 April. A notice in relation to applications for wardship was sent to barristers and solicitors.

In preparation for the commencement of the Assisted Decision Making (Capacity) Act 2015, the President of the High Court has directed that the Office of Wards of Court will stop accepting wardship applications...from the 22nd April 2022.

A direction was given to that effect. If we fast-forward to 12 May, the exact same language was used except it was to say that "the Office of Wards of Court will re-commence taking applications". We can imagine the utter confusion. One direction on 1 April says there will be no more wards of court and on 12 May applications for wards of court are to recommence. We try to be positive and work with the Minister of State and then we see all of this without any adequate explanation. What is the total number of wards of court? It seems that 2,200 have been created unnecessarily since 2015 when the Act was supposedly, in theory, to stop the wards of court system. Deputy Jim O'Callaghan was trying to clarify this as well. Is it 3,000 wards of court or 4,000? How are the courts going to manage that? The Minister of State mentioned something yesterday in passing to the effect that there would be a panel of judges over a three-year period. How are they going to manage that? What resources will be put into place? Who is going to pay for that? When medical evidence is required by the courts, will more and more come out of the estates of those who have been declared wards of court? While we are talking about this, I understand that there are funds in court of €1.46 billion.

Correct me if I am wrong, but this should all be set out for us. What is the total amount of funds currently under the wardship system that is presided over by the President of the High Court? What will happen to those funds? We know now that the director of the DSS, who happens to be female, will not deal with that because that competence has been taken from her. Where is the information on what will happen to those funds? Nobody has said. This is crucial, given what Deputy Boyd Barrett alluded to and what I have raised in the past. There are serious concerns.

I sat on the Committee of Public Accounts when a report came before it stating that the investments were made, not wisely, but that there was no question regarding them. The group has highlighted that no assessment was independently done of the decision-making and risk-taking around the investment of funds. There are questions relating to that. We ignore them at our peril, but that is what we are doing. We have no clarification on that. Will the Minister tell us what are the total funds being held by the High Court? Where will they go? Who will manage them? Will we outsource each one as a ward of court is transferred to the new system? What will happen in respect of all that?

I really want to work with the Government, but it is impossible to do so without proper explanations and without getting rid of the arbitrary date in June, given that we have waited 200 years or 170 years and, in particular, that other countries have done it better. We should have learned in the meantime that empowering and enabling is exactly what they mean. That is what we should be doing. The best people to educate us on that are those with disabilities or the organisations that represent them, and we have utterly ignored them. The Irish Human Rights and Equality Commission Act obliges us to consult with the disability organisations but not with other organisations. That is also unacceptable.

Michael Moynihan (Cork North West, Fianna Fail)
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I welcome the opportunity to discuss the Bill. I also welcome the Minister and the Minister of State. We are talking about the basis of the decision-making capacity Act. On the 2015 Act and its non-enactment, we are talking about very complex legal issues. Previous speakers referenced Acts that have been there for almost 200 years. The Assisted Decision-Making (Capacity) (Amendment) Bill is very fundamental to the rights of individuals. While I welcome it, the Bill is also unearthing many challenges because, as public representatives, we have all from time to time dealt with families in situations where the law and trying to navigate it is very complex, especially for people who have lost the capacity to make decisions. The perception in the wider world may be that this just relates to elderly people, but it does not. It affects young people and people who, for one reason or another, including accidents or ill health, have reached a point in their lives when decisions have to be made.

The Bill will replace a system that is very outdated and that has been very challenging. We have seen people made wards of courts, where settlements or funding has been put in place, and how that has worked. It takes significant legal expertise and advice for families to navigate through that, when they look for to draw down funding for the needs of a person. I have seen families get completely frustrated by having to go back to the courts to make a case and so on. We have to be very mindful that we are talking about very vulnerable people at a very vulnerable time for families and everybody else. The least we might have is a very sensible pathway in order for them to navigate and get through the system.

We have to reflect very carefully on the legislation before us. It is the right thing to do at this time. It comes up week in and week out in all the discussions of the Joint Committee on Disability Matters. Two members of that committee are in the Chamber; Deputy Murnane O'Connor and the Vice Chair, Deputy Tully. We have discussions on the decision-making capacity Bill and they constantly look to get it through as its enactment will remove one of the major blockages to ratification of the UNCRPD optional protocol. It is very important that we do not delay that any further. The optional protocol is very important for everybody who has a disability. We need it ratified so the State can stand over the decisions it is making, and is seen to be at the coalface and seen to be embracing the UNCRPD, which is a very fine document. It is very important to have that as our foundation.

Any further delays in the ratification of the optional protocol are absolutely unacceptable. I expect and ask, if not demand at this point, that the Government, on the completion of the passage of this Bill through the Houses, does not delay the optional protocol by one iota. Feedback has come to me that various channels have to be gone through, and that the Attorney General's office and others are going through the optional protocol. We have ratified the UN convention for some time and the optional protocol has been a commitment. We now need to make sure that all Departments are up for ratification of it and that it is there as a mechanism and foundation for us, or an insight for people who are dealing with disabilities and trying to get answers, if the State is not providing proper services.

This leads me to the services in place for people with disabilities and people with intellectual disabilities. The Minister of State has been at the forefront in challenging the system. I commend her on the work she is doing. She is well able to take on the system but there is a major challenge regarding disabilities and services. It was highlighted in the past couple of weeks in respect of school places but that is really only the tip of the iceberg of what is there. On Thursday mornings, those of us privileged enough to sit on the Joint Committee on Disability Matters hear stories of the lived experiences of people with disabilities and the challenges they face in their daily lives. As a society, we need to open up to those challenges and ensure we are tearing down those barriers. The disability portfolio is moving into the Minister's Department. It is refreshing to see the Minister and the Minister of State side by side in the Chamber to listen to the debate and to take on board the concerns of Deputies, who are relaying the concerns of their constituents and those they meet at Oireachtas committees and elsewhere. It is very important that we look at the challenges out there.

We had a debate last week on the July provision and the money that was allocated to it, and the fear that the money might not be spent at this stage and the provision might not be provided in the way it could be. We need to be imaginative in how we look at it and in how we recruit people, including those going through college, such as occupational therapists, speech and language therapists and physiotherapists. Before they have completed their courses, they should be able to work under the July provision and gain very valuable experience for their degree courses in the work they are doing that will also allow them into the system. We need to ensure we are able to keep those people working in our country because our society needs it so badly. I ask the Minister and the Minister of State to ensure everything is done. I know the July provision comes under a different Department. There is also the issue of teachers who have completed two or three years of training who could be brought under it. We need to think outside the box.

The provision of care for people with disabilities has come to my attention over the past few days.

There comes a point in every family's life when there is a crisis. For example, when parents get older and one of them gets sick or passes away, a crisis arises in terms of providing respite or care for a person who needs it.

Evidence has come to me about some people who should be offered full-time contracts within the services not being offered any. Full-time contracts mean that people can depend on those contracts to go to their credit unions, banks or other lending institutions. These people have considerable experience of providing care for people with disabilities. We cannot afford to lose their expertise. We should be examining this matter from top to bottom. There are fantastic people providing a service that is second to none. We should hold onto all of them within our services and no one should be lost because of not being offered a full-time contract. As we enter June, it is wholly inappropriate that there are some people within the State's services who are not getting full-time contracts.

We are told that ample funding is available. If money is returned unspent to the Exchequer at the end of the year, it will be unforgivable because the services are in a shambles. When the Government was faced with unprecedented challenges over the past two years because of Covid, the whole of the Government worked together to meet those challenges head on. We do not see the same urgency being shown towards people with disabilities or meeting the challenges involved.

Down the years, many services were built on community initiatives under section 39 organisations. Good, well-intentioned people formed organisations built on community initiatives the length and breadth of the country. I could name some of them. The HIQA regulations, as well as other regulations, are important for ensuring that we can have confidence in the services being provided, but this situation has moved on a further stage.

I am straying from the topic of disability and capacity, but I wish to make a point. Ample funding is available for home care but there are no staff available. The problem is that good people are being lost everywhere in the services. Staff in section 39 organisations do not have pay parity, yet they are providing the exact same care as staff in section 38 organisations. They need to be kept within their organisations, but people are leaving them for the HSE or leaving the HSE for private practice. We must ensure that everyone is on board because we cannot afford to lose people. We should be looking at recruitment. If a multinational company came to Kiskeam – it might happen some day – there would be a recruitment drive across the continents. Why is there not the same urgency in the HSE's recruitment of people?

Deputy Tully, our committee's Vice Chair, and Deputy Carroll MacNeill, who has just left the Chamber, are used to listening to the information provided at our meetings – we regularly meet on Thursday mornings – about occupational therapists leaving, about services, including occupational therapy, not being available in the public sector, and about people having to go private, skipping mortgage and personal loan repayments in an attempt to provide the best for their kids. I applaud them for doing that, but it should not have to be the case.

We are debating this legislation to ensure a proper legal foundation for dealing with people with incapacity. When I was made Chairman of the Joint Committee on Disability Matters, I said that a future Taoiseach would apologise in this Chamber for the way that people with disabilities had been treated. That has already happened.

We must ensure that we are challenging the system at every level. I have great confidence in the Minister of State, Deputy Rabbitte, and the Minister, Deputy O'Gorman, doing that as a team, but we need to examine where the logjam is and make enough resources available to ensure that the maximum number of staff are kept on. These are people who have built up considerable expertise. We have seen families in crisis not getting the care they need. Some people who have been eight, ten, 12 or 15 years with an organisation cannot get full-time contracts. That is not acceptable.

I welcome the Bill, but I ask that we keep it under review. It follows on from legislation that is more than 200 years old and, while it needs to be enacted, we need to see where the challenges in its operation are. There will be challenges because this is complex legislation that deals with families going through complex periods involving incapacity. We must ensure that there is a constant review. Will the Minister of State and the Minister commit to reviewing it in 12 months' time to see whether amendments are needed to ensure it is working properly?

The minute the Bill is passed by the Houses, the State needs to ratify the optional protocol. Then, if people do not believe they are getting proper services, they could go to the UN, which would be able to put pressure on the State and Government to ensure that proper services are available. There should be no delay in ratifying the UNCRPD optional protocol. That would not be acceptable. We have been told that this Bill must be enacted first. Now that it will be, there should be no further delay. In this way, we as a society will give the most vulnerable people – those who do not have capacity – the best possible chance and the State will work in their best interests in the simplest legal way.

A point was made about free legal aid. I would like it clarified. I assume that free legal aid would be available under this legislation, but we should clarify the position.

I thank the Ceann Comhairle for the opportunity to contribute to the debate on this Bill. We need to underwrite the legislation in the best possible way for people with disabilities and incapacity by pushing the system and challenging the blockages therein. The Government and the HSE must challenge these blockages and ensure that we do not lose expertise. Brain drains were mentioned as regards other sectors. We are losing valuable people from the disability sector because the State has not ponied up, for want of a better term, and ensured that their contracts are renewed and there is pay parity between staff in section 38 and 39 organisations who are doing the exact same jobs. This disparity should not be countenanced any longer.

I look forward to the conclusion of this debate and the enactment of the UNCRPD optional protocol.

Seán Ó Fearghaíl (Kildare South, Ceann Comhairle)
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It is always valuable to the have the view from Kiskeam. Our next contributor is Deputy Tully. At 6.30 p.m., I will have to interrupt her to ask her to propose the adjournment of this debate.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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This is important legislation that aims to abolish the wards of court system for adults with reduced decision-making capacity and introduce a graduated supported decision-making framework that is intended to support a range of people who may have capacity issues. This is critical legislation for disabled people, their families and carers, as well as many others.

While I am generally supportive of the Bill, I am extremely critical of the lack of meaningful consultation that has been afforded to relevant stakeholders who will be affected by it, especially disabled persons organisations. I am also enormously disappointed at the limited time that has been given over to scrutiny and to us submitting amendments.

The UNCRPD and best practice in the area of disability mandate a shift in culture and policy away from the medical model of disability and its focus on best interests and duty of care concepts to using a human rights-based approach and a social model for disability. The UNCRPD conceptualisation of disability is in line with the social and human rights models of disability and, therefore, should be adopted as the understanding of disability within the Act. The presumption of capacity and the importance of will and preference are central to this legislation. The focus on supporting relevant persons to make decisions based on their will and preference is welcome but the Bill needs to be strong in embedding the presumption of capacity and the importance of will and preference into law. A number of concerns have been expressed on how these aspects of the Bill need strengthening. If a relevant person has been declared to lack capacity, then the Bill permits substitute decision-making. Substitute decision-making diverges from article 12, as interpreted by the UNCRPD, and, therefore, should be removed. Capacity building and significant supports and resources will be key to enabling decision-making, prioritising will and preference, and alleviating the pressures on family carers.

Although this Bill is progressive in that it centres on the presumption of capacity, the legislation still relies on a functional assessment of mental capacity, which contrasts with article 12 of the UNCRPD. This should be removed and replaced with an obligation to acknowledge, interpret and act upon the relevant person's will and preferences, in line with the UNCRPD. Parts of the Bill give discretion to waive the relevant person's privacy or consent in certain circumstances. This is seen to contrast with the emphasis that both the Act and the UNCRPD place on the presumption of capacity and the importance of will and preference. While the intention here is to safeguard relevant persons, the Bill should include an explicit commitment to take all relevant steps to obtain informed consent before information is shared or privacy compromised. On this issue, Disabled Women Ireland state:

While we want to ensure that there are protections within these systems to avoid abuse, it should be done in a manner which centres the person, their will and preferences and rights... Nothing in the act should grant anybody the power to negate the consent of the person without oversight from the court.

The safeguards contained within this Bill, especially those concerning the relevant person’s will and preference, including accountability, appeals and complaints mechanisms, should be strengthened. Explicit provision should be made within the Bill for the Irish Human Rights and Equality Commission to keep the adequacy and effectiveness of law and practice in the State relation to the protection of persons with disabilities under review. This provision was removed from an earlier amendment. This Bill should also oblige the Irish Human Rights and Equality Commission to engage with disabled persons and DPOs in its monitoring role of the UNCRPD, rather than with the National Disability Authority exclusively.

Under article 4 of the UNCRPD the State has an obligation to proactively engage with disabled people and their representative organisations. However, there was no public process organised by the Department to engage with DPOs, family carers or other relevant persons. While commitments were made by the Department and the DSS during pre-legislative scrutiny to provide more accessible resources going forward, it was too late for many that would have wished to engage with the relevant submissions processes. Legislation of this kind requires a collaborative approach to succeed that involves relevant persons, families, carers, service providers and any other groups in wider society as needed. This must include the use of alternative modes of communication to take account of the diverse and complex situations that those affected by the legislation may encounter. Independent advocates also have an important capacity building and safeguarding role to play. There is a need, therefore, to include within the Bill a definition of advocacy and a provision establishing a general right of relevant persons to an independent advocate.

My colleague, Deputy Ward, has comprehensively dealt with the mental health issues in this Bill, so I will be brief. Mental Health Reform, along with many other stakeholders, highlighted the need for alignment between this Bill and the Mental Health Acts to ensure there are no contradictions between the two and that access to the supports available under the 2015 Act cannot be withheld from persons in mental health settings. A person's liberty must never be denied on the basis of an assessment of their capacity. The Bill should clarify that nothing in this Act shall permit interveners to use either chemical or mechanical restraint. Sufficient resources need to be made available so that this right can be meaningfully realised while ensuring the safety of the relevant person, their family and their carer.

The transformational potential of the Bill will only be fully realised if it is sufficiently resourced. An impact assessment needs to be carried out at the outset to ascertain the resources that will be required to build awareness of the legislation, build a relevant person's capacity to engage in decision-making and make their choices a reality on the ground. As Dr. Alison Harnett said at the committee:

The funding and resourcing of the required supports to meaningfully address the rights-based approach to providing choice to people with disabilities across living, education, employment and other areas must be considered in the planning for the implementation of this Act, as this will be a key driver of access to will and preference for people with intellectual disabilities.

It is also important that family carers do not get left behind. Tailored supports for family carers, financial and otherwise, should be made available.

The financial challenges faced by many stakeholders in this field are well-known. It is vital that costs and fees for those operating under the Bill are kept to a minimum. While I am generally supportive of the Bill, I am extremely critical of the lack of meaningful consultation that is being afforded to relevant stakeholders who will be affected, especially disabled persons organisations. I am also enormously disappointed at the limited time that has been given to scrutinise and submit amendments. I cannot cover all the issues with this Bill today. The committee report included 64 recommendations to improve this Bill and these need to be taken on board. Unfortunately, it seems that the Government may have missed an opportunity to make Ireland a leader in capacity legislation and to fulfil our obligations under the UNCRPD. Sinn Féin will, therefore, be submitting numerous amendments to make this Act inclusive, equal and human rights compliant.

I note that Deputy Michael Moynihan referenced the optional protocol and the fact that it has not been ratified yet. We are often told that this depends on the passing of this Bill but others have said the opposite and that it is not dependent on this Bill. I am hope there will be no excuse at that point anyway and that the optional protocol will be ratified and implemented after the passage of this Bill.

Seán Ó Fearghaíl (Kildare South, Ceann Comhairle)
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I call Deputy Pringle but I will ask him to adjourn the debate after two minutes.

Thomas Pringle (Donegal, Independent)
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That is no bother at all. It has been a while since I have had to propose the adjournment of a debate, whereas at one stage, it was nearly every time I spoke that I had to do so.

I am grateful for the opportunity to speak on this extremely important Bill. For such an important Bill I have to say I am appalled at the last minute publication and the general lack of consultation that was allowed for this. We were told at the Business Committee last week that the Bill would be published before the weekend. That timeframe was nowhere near sufficient. However, at least we were being given the weekend to read and consider this massive and complicated Bill. Despite this, the Bill ended up not being published until Monday. This is unacceptable and has created a sense of frenzy and panic among politicians and organisations to ensure proper scrutiny and consideration of the legislation. I would like to take this opportunity to acknowledge the Bills Office, which does great work despite the intense pressure it is under due to rushed legislation such as this, and the Oireachtas Library and Research Service, which managed to publish a Bill digest last night despite such a last minute publication.

In her contribution, Deputy Connolly devastatingly outlined and critiqued, from the Government point of view, what is happening with this legislation. That is a sad reflection and I have been trying to figure out what it means. The legislation was published and pushed through in 2015 and then we discovered it was not suitable or fit to do its job. This was in 2017 and it is now 2022 and we are coming up with legislation on foot of a Supreme Court judgment that is due to happen. We were told that a Supreme Court judgment was due to happen and then at the briefing on Monday, we were told it was because other bodies were ready to make this work and that the Banking and Payments Federation Ireland and organisations like that had been ready to make it work. Then we were sent a note on a constitutional case. Maybe that is the reason this is a problem. It points to something badly wrong in the system and how it is working that legislation could be enacted in this way.

None of the provisions of previous legislation that would have made the changes that are required was enacted. I wonder how many other Acts on the Statute Book are only part-enacted or have had only a couple of sections enacted. Everything is rushed through the House. We must ask whether everything contained in this Bill will be enacted once it is passed. It is a shocking situation. We are here in the midst of it, being told legislation needs to be put through in a mad rush, only to find later, on looking into the detail of it, that there really was no need for such a rush. My belief is that this rushed process is a result of inertia within the Civil Service and the Government when it comes to doing what they should be doing.

Seán Ó Fearghaíl (Kildare South, Ceann Comhairle)
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The time is up. The Deputy will have a second bite of the cherry tomorrow.