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Joint Committee on Children, Equality, Disability, Integration and Youth debate -
Wednesday, 16 Feb 2022

General Scheme of the Assisted Decision-Making (Capacity) (Amendment) Bill 2021: Discussion (Resumed)

Apologies have been received from Deputies Phelan and Cairns and Senator Ruane. Before we begin, I will go through a few housekeeping matters. If members or witnesses who are participating remotely experience any sound or technical issues, they should let us know through the chat function on Teams. As this is a public meeting, the chat function on Teams should only be used to advise of technical issues or urgent matters and not to make general comments or statements. I remind members and witnesses who are participating remotely to keep their devices on mute until they are invited to speak. When they are speaking I ask them to have their camera switched on, where possible, and to be mindful that we are in public session.

In addition, I remind members of the constitutional requirement that they must be physically present within the confines of the place where Parliament has chosen to sit, namely, Leinster House, in order to participate in public meetings. I cannot permit members to participate where they are not adhering to this constitutional requirement. On Covid-19, I ask everyone to keep their masks on unless they are speaking and to exercise personal responsibility.

Today, we will continue pre-legislative scrutiny of the Assisted Decision-Making (Capacity) (Amendment) Bill 2021. We had our first meeting yesterday on this matter. Our witnesses are: Professor Eilionóir Flynn and Ms Clíona de Bhailís from the Centre for Disability Law and Policy at the National University of Ireland, NUI, Galway; Ms Carol Baxter, assistant secretary, and Mr. Niall Brunell, principal officer, Department of Children, Equality, Disability, Integration and Youth; representatives of the Decision Support Service, DSS: Ms Áine Flynn, director, and Mr. John Farrelly, chief executive of the Mental Health Commission; and Mr. Adam Harris, commission member, and Dr. Iris Elliott, head of policy and research, Irish Human Rights and Equality Commission, IHREC. They are all very welcome. We are delighted to have them with us either present in the room or virtually. We had a very interesting session yesterday and I hope they had the opportunity to listen to it.

I will advise the witnesses of parliamentary privilege before asking them to give their opening statements. Witnesses addressing the committee from the Leinster House complex are protected by absolute privilege in respect of the presentations they make to the committee. This means they have an absolute defence against any defamation action for anything they say at the meeting. However, they are expected not to abuse this privilege and it is my duty as Cathaoirleach to ensure this privilege is not abused. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction. For those appearing virtually, there is uncertainty if parliamentary privilege will apply to their evidence from a location outside the parliamentary precincts of Leinster House. Again, therefore, if they are directed by me to cease giving evidence, it is imperative that they comply with any direction.

The running order of the opening statements will be Professor Flynn, followed by Ms Baxter, Mr. Farrelly and Mr. Harris. I call Professor Flynn to make her opening statement.

Professor Eilionóir Flynn

On behalf of the Centre for Disability Law and Policy at NUI Galway, I welcome this opportunity for engagement with the committee on the important subject of proposed amendments to the Assisted Decision-Making (Capacity) Act. Our centre was among a coalition of organisations that campaigned for the Act to be introduced in 2015, as part of Ireland’s efforts to bring our laws into conformity with the UN Convention on the Rights of Persons with Disabilities, UNCRPD. We share the frustration of other groups who have made submissions to this committee that in the seven years since its enactment we have not seen sufficient change to protect the human rights of those subject to this legislation. The centre has provided a detailed submission to the committee outlining our objections to some of the proposed heads of Bill and the need for further amendments to fulfil Ireland’s human rights obligations. I am happy to discuss any of these issues with committee members in the discussion that follows, but in my opening statement I will draw their attention to three overarching issues with the process of developing, and the substantive content of, the amendments proposed.

First, as has been noted by other groups, especially disabled people’s organisations, the process by which these amendments have been developed has not been inclusive. A 174-page document containing the heads and explanatory notes was published by the Department on 22 November. To the best of my knowledge, there was no public process organised by the Department to engage with disabled people’s organisations, or other groups, in the development of these heads. There is also no plain English or easy-to-read version of the text available. Indeed, there is still, seven years after the enactment of the original legislation, no easy-to-read version of the 2015 Act available. This law has a significant impact on the lives of disabled people, including people with intellectual disabilities, and it has not been made accessible to them. This raises a broader issue with the accessibility of legislation, and legislative development in general, which I urge all Deputies and Senators to tackle.

Second, I am concerned about the overall direction of the amendments we are discussing. While many of those amendments may appear minor or technical in nature, I believe a clear pattern emerges from them, which is the increasing bureaucratisation of support and the creation of an assisted decision-making industry. Many of the amendments will make it more difficult for a person to designate their chosen decision supporter, or more challenging for a supporter to work in the way the person wants. This is the exact opposite of what many of those who campaigned for this legislation wanted.

Third, I am disappointed that the amendments put forward in the heads of Bill are not more ambitious in respect of human rights compliance.

There are some obvious gaps in the original Act which are not addressed in the amendments proposed, like ensuring that advance healthcare directives remain fully applicable for those detained under the Mental Health Act and removing language concerning the deleterious effect on the unborn in the wake of the repeal of the eighth amendment of the Constitution. Some of the provisions incorporated here from the Disability (Miscellaneous Provisions) Bill 2016 also miss the mark in terms of what we hoped for, for example, in enabling disabled people to sit as members of juries. The amendments also do not address the need for further resources to be provided to give effect to the decisions people may make under this law, including decisions about where and with whom to live.

Finally, the Act’s reliance on the functional assessment of mental capacity remains incompatible with Article 12 of the UNCRPD according to general comment No. 1 of the UN committee on the rights of persons with disabilities. We have waited seven years since the enactment of this Act but if we need to wait a bit longer to improve the Act’s human rights compliance, it may be worth the wait.

I thank Professor Flynn very much. We are moving on to Ms Carol Baxter for her opening statement.

Ms Carol Baxter

I thank the Chairman and members for the invitation to speak to them regarding the pre-legislative scrutiny of the general scheme of the Bill. As members will be aware, the Bill is intended to amend the Assisted Decision-Making (Capacity) Act 2015 to address issues that have arisen since its enactment and which must be rectified or removed before it can be commenced.

Commencement of the 2015 Act will enable a fundamental change of the law on decision-making capacity to be brought into effect, which will abolish wardship and provide persons with capacity difficulties, known as relevant persons, with access to new decision support options that are required to respect that person’s decision-making autonomy to the greatest extent possible. Once the DSS becomes operational, people with capacity difficulties will have access to the agency mandated to enable them to avail of these new decision support options.

The process of preparing for the DSS to become operational has enabled a critical review of the 2015 Act to be undertaken, identifying provisions which would operate more effectively if amended or which go counter to the objective of safeguarding the rights of the relevant person. The new system for enduring powers of attorney, for instance, under which the relevant person registers the power while she or he has capacity, is intended to give the relevant person control of the process, including being able to resolve any questions in relation to the power rather than leaving them to an attorney when the relevant person has already lost capacity. The DSS is being given powers, for instance, to specify certain matters such as in relation to the forms to be used when people are applying to establish, vary or revoke one of the decision support options. This will allow it the flexibility to change forms as needed, including where statutory requirements change under other Acts. It will also be able to provide services digitally.

The 2015 Act addresses challenging policy matters. While the provisions on restraint were intended as restrictive, limiting the use of restraint in private settings to exceptional situations, we have been advised by a range of stakeholders that these provisions might be interpreted instead as permissive. Accordingly, the general scheme proposes to remove these provisions from the 2015 Act.

The provisions on wardship proposed in the general scheme are designed to strengthen the protections for wards as they go through the process of being discharged from wardship or moved to the new decision support options. Safeguards are also being strengthened where a decision supporter abuses his or her position. The general scheme provides for the director to apply to the court for an order temporarily prohibiting someone from acting as a decision-making supporter pending the outcome of an investigation where there is a risk that the decision support might deplete the relevant person’s assets or pose harm to that person. The general scheme also provides for an offence of ill-treatment or wilful neglect of a relevant person by a decision supporter and for persons convicted of such offences to be disqualified from acting as decision supporters. This is a complex area requiring careful deliberation. It is not possible for the general scheme to address all the issues which arise in such a fundamental reform of the law on capacity. The safeguards that will apply where a person is deprived of his or her liberty will be the subject of separate legislation, which is currently being prepared by the Department of Health.

The Bill is also intended to enact key provisions of the Disability (Miscellaneous Provisions) Bill 2016, which lapsed at the dissolution of the Houses before the latest election. These provisions include giving IHREC a statutory mandate for its role to oversee implementation of the UNCRPD and for the National Disability Authority, NDA, to support this process. It also provides for the incremental doubling of the percentage of people with disabilities employed in the public service from the current 3% figure to 6% by 2024. This is a key measure to increase employment opportunities for people with disabilities in line with the objectives of the comprehensive employment strategy for people with disabilities, the third action plan of which is currently being finalised for 2022 to 2024.

The general scheme proposes to amend the Electoral Act 1992 to remove the prohibition preventing persons "of unsound mind" from standing for Dáil elections. It also proposes to amend the Juries Act 1976 to enable people with specified disabilities to serve on juries. This will open the door for more visible and meaningful representation and civic participation for persons experiencing capacity difficulties and for people with certain disabilities. It represents key progress in further realisation of the UNCRPD, in particular of Article 29.

In conclusion, the Bill is intended to support the reform of the law on capacity. We look forward to the joint committee’s report on the general scheme and to enactment of this important Bill at the earliest opportunity.

I thank Ms Baxter very much. We will move on now to Mr. Farrelly.

Mr. John Farrelly

The Mental Health Commission is an independent statutory body established under the provisions of the Mental Health Acts to promote the establishment and maintenance of high standards in mental health services and to uphold the rights of persons detained in approved centres. The Mental Health Commission's remit was extended by the Assisted Decision Making (Capacity) Act 2015 to include the establishment of this new decision support service. The director of the DSS, Ms Áine Flynn, is attending the committee.

Ms Flynn and her staff in the DSS are employees of the commission, with a distinct but complementary statutory remit. Until shortly before the passing of the 2015 Act, the intention was that the DSS would be located in the Courts Service. It is my view that the commission is a more compatible home for the DSS as the commission has been able to share its valuable experience of building a service to implement long-awaited, rights-based reforms.

The board and the executive of the commission have been strongly supportive of the DSS establishment project. This is and has been a multifaceted project based on an approved, time-bound and costed plan. It is worth stating that the business processes, IT systems, communications and draft codes of practice of the DSS have been developed based on assumptions about the content of the amended Act. At this stage, any major divergence from the present general scheme would impact on our timeline to the commencement of operations. We would hope to commence in June this year.

During the DSS establishment project, the service has had the opportunity to engage extensively with the Department of Children Equality, Disability, Integration and Youth and previously with the Department of Justice and Equality on amendments to the 2015 Act. At all times, this engagement has been with a view to ensuring that the Act functions in a way that is person-centred and provides ease of access to the new support framework.

We are pleased to note that a number of our proposed amendments are reflected in this general scheme. As set out in our submission to this committee, we have particularly welcomed the following proposals. Amendments with regard to the director’s investigation of complaints clarify that informal resolution rather than escalation to the court should be available where appropriate. The amendments also provide a means of temporarily suspending a decision supporter pending investigation in urgent cases.

It was our submission that the repeal of section 43(3), which provides for the court to confer on the director responsibility for custody, control and management of the relevant person’s property, albeit in limited circumstances, is incompatible with the director’s other functions and, indeed, had echoes of the approach in wardship.

We believe the revision of the process in relation to enduring powers of attorney should provide greater certainty for persons planning ahead.

The improved position of current adult wards whose cases will be reviewed under Part 6 is welcome. We understand there are approximately 2,150 adult wards and that approximately 40% hope to apply to have their cases reviewed as soon as possible after commencement.

The improvements in access to the court and to ongoing review are important, as is the repeal of section 57 with its concerning reference to "a class of wards". The removal of provisions around the purported exercise of restraint by attorneys and decision-making representatives is also very important. In this context, we reiterate the urgent need for protection of liberty safeguards for institutional settings, which we understand are to be developed as stand-alone legislation by the Department of Health.

In our submission, we refer also to a number of minor outstanding matters and to more substantive matters not included in this general scheme, on which we understand work is continuing. The commission is particularly concerned about the interface between the 2015 Act and the Mental Health Acts. We must emphasise that access to the supports available under the 2015 Act cannot be withheld from persons in the mental health setting.

I reiterate that the commission and the DSS team is appreciative of the contribution we have been able to make to this amending legislation and the invitation to address this committee. The 2015 Act is ambitious and complex legislation. From our extensive and diverse stakeholder engagement, we are aware that there are varying opinions about the 2015 Act, whether it goes too far or not far enough, especially with regard to achieving compliance with the UNCRPD. There may well be matters that need to be revisited in future and it is part of the director’s duties to keep the operation of the Act under ongoing review. It is, however, deeply principled legislation and we know that a huge number of persons are waiting impatiently for its delivery. We are pleased to assist with this step forward on the journey to its long-awaited commencement.

I thank Mr. Farrelly and invite Mr. Adam Harris.

Mr. Adam Harris

I am joined by the Irish Human Rights and Equality Commission’s head of policy and research, Dr. Iris Elliott. The commission is Ireland’s independent national human rights institution and national equality body. Since Ireland’s ratification of the UNCRPD, we have also acted as independent monitor designate of Ireland’s obligations under that convention. In doing this we have operated under our own statutory mandate and powers while awaiting this legislation. Today we will address the statutory role this legislation will confer on the commission as formal monitor of the UNCRPD, but also our recommendations more broadly on this Bill.

The commission has, over recent years, used our legal powers to act in a number of landmark cases around Ireland’s wardship system. These have included: AC v. Cork University Hospital, which made clear that people with disabilities are protected by the same constitutional guarantees and legal protections as any other person; L v. Clinical Director of Saint Patrick’s Hospital, which clarified the rights of voluntary patients in approved centres; and AB v. Clinical Director of Saint Loman’s, which found section 15(3) of theMental Health Act 2001to be unconstitutional.

Being blunt, for far too long we as a State have put up with a system of wardship, which is detached and divergent from any contemporary understanding of the concept of personal autonomy. The move to a rights-based approach, with respect for the will and preference of the person is long overdue. Offensive legislative language of lunatics and lunacy must be dispatched to the dustbin of history, replaced by a recognition of the rights of people with disabilities, and viewed through a lens of dignity, agency and participation.

A strength of this new legislation lies in its greater assimilation of human rights standards as to privacy, expression, fair trial, liberty, and association, stemming from our Constitution, the European Convention on Human Rights, ECHR, the UNCRPD and the EU Charter of Fundamental Rights. The commitment by the Government to commence the 2015 Act by June 2022 is absolutely necessary, but the commission holds concerns after years of delay, that such significant legislation is being moved at significant pace. We would restate our ask, made first in respect of the original legislation in 2016, that in line with UNCRPD obligations, every opportunity is afforded to a wide range of stakeholders, particularly people with disabilities, to meaningfully participate both in this pre-legislative scrutiny, and in a continued exchange with relevant stakeholders in the development of and implementation of this legislation.

The committee's pre-legislative scrutiny yesterday with disability rights groups and disabled people’s organisations, while welcome, must not be seen as job done. With our commission’s UNCRPD monitoring role, it is welcome that this independent monitoring mechanism will finally be cemented by way of an amendment to the Irish Human Rights and Equality Commission Act 2014. While the lapsed Disability (Miscellaneous Provisions) Bill 2016 had previously stood to provide for this, this amendment is now contained in head 85.

Compared to the text of the 2016 Bill, the amendment now proposed makes a number of changes. This Bill for example does not make explicit provision for the commission "to keep under review the adequacy and effectiveness of law and practice in the State relating to the protection of persons with disabilities", whereas the previous amendment did. This Bill has deleted the word "protect" in the outlined tasks of the independent monitoring mechanism, compared to the previous amendment. These proposed changes require further consideration to ensure that they do not give rise to a narrowing of the commission’s independent monitoring mechanism role.

IHREC recommends that on definitions of "disability" we would prefer to see an alignment with the UNCRPD Article 1 concept of disability rather than the 2005 Disability Act. More broadly, while we welcome provisions to establish a new statutory framework around wardship, and on particular provisions including changes aimed at the better inclusion of disabled people on juries, we bring to member’s attention some significant issues that remain to be addressed, namely, weaknesses around the limited nature of appeals given to relevant persons under the legislation. The 2015 Act and this general scheme only allows for a limited appeal on the many decisions that can be made on capacity and related issues, and on a point of law only. This compares unfavourably, for example, to the full right of appeal provided by section 19 of the Mental Health Act 2010.

Another significant issue is that it is unclear the manner in which legal representation will be afforded to relevant persons, particularly again when compared with how the Mental Health Act 2001 affords involuntarily detained persons a legal representative by way of statutory right. Part 10 focused on detention matters and it is unclear what the time frames are within which applications to detain must occur. This again compares poorly with provisions of the Mental Health Act, which establishes time periods within which applications for involuntary detention must be heard by mental health tribunals and appealed to the Circuit Court. We would like to see much more detail on how during the transition period, wards themselves will be kept fully informed of the changes to be effected to their wardship regime. There must be consideration of the situation of people with disabilities in prison, as highlighted by the Irish Penal Reform Trust, IPRT, who might need to avail of decision-making supports while detained, and make any legislative amendments needed to provide such supports. There is also the continuing failure to provide for a system akin to the deprivation of liberty safeguards that exist in England and Wales. I will conclude here as there is much to discuss, and we are now happy to take any questions the committee may have.

I thank Mr. Harris and all of our witnesses for their presentations. We will now move on to questions from members. I remind members that they have ten minutes each for the questions and answers. I ask that they put their question to a specific person or organisation, rather than asking everyone to answer the question. This is a more efficient use of the time.

I thank the witnesses for their opening statements. There are a number of issues, the first of which I will address to the NUI Galway representatives. It has been pointed out that the process by which these amendments have been developed has not been inclusive. There was no public process organised by the Department to engage with disabled organisations in the development of these heads of the Bill. No plain English or easy-to-read version of this is available and it has not been made accessible to them. The issues of accessibility of legislation needs to be addressed. How is it proposed to do that? We need to engage with the disability sector to do that, but how can we best do that?

The second issue is that while the amendments may appear minor or technical in nature, there is an increasing bureaucracy of support in the creation of an assisted decision-making industry. The amendments will make it more difficult for a person to designate their chosen decision-maker. How can that be addressed? How can we make it easier for a person to designate his or her chosen decision-making supporter?

Dr. Flynn stated that the amendments tabled are not more efficient with regard to human rights compliance, "in enabling disabled people to sit as members of juries. The amendments also do not address the need for further resources to be provided to give effect to the decisions people may make". That is very concerning. Mr. Farrelly stated, "The Mental Health Commission's remit was extended by the Assisted Decision Making (Capacity) Act 2015 to include the establishment of this new decision support service." It is the witnesses' view that the commission is a more compatible home for the DSS. Is that where it is currently located? Is that where they would like it to be? Is it compatible with the courts where it currently is? Do they want to relocate it?

Mr. Farrelly stated, "We must emphasise that access to the supports available under the 2015 Act cannot be withheld from persons in the mental health setting." That is another issue. This is for Mr. Harris. Ms Baxter stated:

Once the DSS becomes operational, people with capacity difficulties will have access to the agency mandated to enable them to avail of these new decision support option ... Accordingly, the general scheme proposes to remove these provisions from the 2015 Act ... Safeguards are also being strengthened where a decision supporter abuses his or her position. The general scheme provides for the director to apply to the court for an order temporarily prohibiting someone from acting as a decision-making supporter pending the outcome of an investigation ... The general scheme also provides for an offence of ill-treatment or wilful neglect of a relevant person by a decision supporter ... It also provides for the incremental doubling of the percentage of people with disabilities employed in the public service from the current 3% figure to 6% by 2024. This is a key measure to increase employment opportunities for people with disabilities [That is welcome] ... The general scheme proposes to amend the Electoral Act 1992 to remove the prohibition preventing persons "of unsound mind" from standing for Dáil elections. It also proposes to amend the Juries Act 1976 to enable people with specified disabilities to serve on juries.

I am sorry; will the Senator be more specific in her last question?

I would like the witnesses to expand on the issues I have raised.

I ask the Senator to be more specific in the questions for the IHREC. She is saying a lot. I am not sure if the question is fully understood.

Mr. Harris stated, "We would restate our ask, made first in respect of the original legislation in 2016, that in line with CRPD obligations, every opportunity is afforded to a wide range of stakeholders, particularly people with disabilities, to meaningfully participate both in this pre-legislative scrutiny". It is important that the disability sector is included in this. How will we do that unless we do it in plain English? Will that be done? Will those affected by this legislation be able to access it in plain English? That is what it boils down to. This legislation affects people with disability and wards of court. It is important that they understand it in plain English.

We will take that question. I know there are questions for NUIG and the Mental Health Commission.

Mr. Adam Harris

The Senator's question covers the heart of what we are discussing today, which is the involvement of people with disabilities throughout this process, including the legislative and pre-legislative process that is happening now, as well as what will happen when this legislation comes into effect. It is important to understand that the State has an obligation under Article 4 of the UNCRPD to proactively engage with the disability representative organisations and disabled people. The UN has interpreted that in some detail in general comment No. 7. It looks at the sorts of reasonable accommodations that the State needs to make in its consultative processes to ensure that the voices of disabled people are at the heart of the process. The commission will be happy to circulate a copy of the general comment to members after the meeting.

The Senator asked what implications for disabled people are in this regard. It is important to realise that this is the start of a three-year process. IHREC has to be clear how wards will be communicated with during this process of a journey from the wardship system towards this assisted decision-making system. Furthermore, we are concerned about the limited nature of appeals that seems to exist when compared with the Mental Health Act. We are also concerned about the lack of clarity about what right to legal representation wards will have and about timeframes that would enable a person to be detained, which are less clear and less specific than what is in place in the Mental Health Act.

Dr. Eilionóir Flynn

On the point about consultation, we appreciate that there is a tight timeline. There is a shared desire to commence the Act as swiftly as possible, given how long people have been waiting. However, we feel strongly, as has been said by other witnesses, that it is not too late for the Department to undertake a more comprehensive and meaningfully inclusive consultation with those who are directly affected by this legislation and the amendments contained in the proposed heads of Bill. That can be done in a number of ways. It can start with some of the groups that presented yesterday and extend beyond them. There are different means by which the Department can engage with people. We encourage it to do so before bringing the final Bill to Parliament.

I will give an example of the bureaucratisation of support that we are concerned about. There is a clear example in head 3, which is continued in heads 38 and 60. There is a proposal to remove the opportunity to include decisions about healthcare treatment in enduring powers of attorney. That would mean that if I wanted to create an enduring power of attorney and I also wanted to plan my healthcare decisions in advance, I would have to create not one but two instruments, which are an enduring power of attorney and an advanced healthcare directives. I may then have two separate requirements for supporting evidence, witnesses for each instrument, and separate assessments of capacity to make both instruments, since capacity is to be assessed in a decision-specific manner under the legislation. It is especially burdensome if the relevant people would like to authorise the same person who they are granting power to under their enduring power of attorney as their designated healthcare representative in an advanced healthcare directive. While people should be free to create two instruments if they wish, we are concerned that the legislation is making this distinction and not allowing people the freedom that they would like to have to decide exactly how their support will be provided. That is just one example of the bureaucratisation of support.

Regarding the need for legislation to be made available in an easy to read format, there are several precedents for how this can be done. My centre and other groups have expertise in supporting the development of easy to read documents. For example, in England, the Mental Capacity (Amendment) Act 2019 was developed as an easy to read version. We have some good examples for how this kind of capacity-related legislation can be done, even though the legislation is complex, and it takes time to explain it in an accessible manner that retainers the accuracy of the legislation. I will leave it at that for now and am happy to speak again if the Senator has questions.

Mr. John Farrelly

The decision support service has been in the Mental Health Commission for some years. This legislation will give full effect to its functions. We have been building the service for a number of years. We think it is compatible because we had the same exercise a number of years ago to make sure that the rights of people with mental health issues were vindicated in an arena where there are professionals and many people with much power, except for the people with mental health issues. We have a particular attitude to making sure that a space is clear for people so that they can exercise their own powers and we can support them, including people who have been detained. I will defer to Ms Flynn, the director of the DSS, on mental health specifically.

Ms Áine Flynn

As we have dealt with in our submission and Mr. Farrelly referred to in the opening statement, we are very keen to see a better alignment between the mental health legislation and the Assisted Decision-Making (Capacity) Act. In our submission, we refer to two aspects in which we think this is important. Professor Flynn also referred to the removal of the viability of an advanced healthcare directive where somebody is detained under the mental health legislation. The DSS of the Mental Health Commission has been very consistent in saying that is discriminatory, it offends against parity and it should be removed but I understand that is receiving attention.

Another concerning section in the Act is section 136, which effectively disapplies access to supports under the 2015 Act in the mental health setting, but I believe that is also receiving attention. We hope that it will be amended in the final version of this legislation.

I do not know if it is appropriate to refer to some of the matters that have come up in colleagues’ answers today, but regarding access to legal representation, which Mr. Harris raised, there is provision in the Act for access to legal aid for the relevant person who is the subject of an application under Part 5. Mr. Harris also referred to some aspects of Part 10 and the detained ward. I understand that part of the Act is also receiving attention. On wards more broadly, the review of their circumstances under Part 6 is the responsibility of the Office of Wards of Court, but it has begun to engage in communications with those current wards, who number approximately 2,150. That would be ongoing, as the review continues, but that is with the Office of Wards of Court.

I am in a position to pick up on the point about the excessive bureaucratisation, as exemplified under the removal of medical and treatment decisions from enduring powers of attorney. Merely by way of clarification, that was not one of our own submissions. The idea is not to create obstacles, but rather to promote clarity. At the moment, when it is possible to plan ahead, in terms of healthcare by way of an enduring power of attorney and an advanced healthcare directive, there were a concern that the two are not necessarily aligned in terms of the protections and requirements under parts 7 and 8 of the Act. In addition, at the moment, as the Act reads, enduring power of attorney cannot extend to a refusal of life-sustaining treatment, whereas an advanced healthcare directive can. It was with that in mind other colleagues made the submission. It was better if advanced healthcare planning around medical treatment was confined just to an advanced healthcare directive, not to make things more difficult, but actually to make them smoother.

My first two or three questions are for the Department. All of us have had concerns about how, particularly through Covid, that approximately 1,200 people being taken into wardship since the Act in 2015. Yet, because of this slow pace, various levels of decision-making supports are not operational. Perhaps someone could come back on that.

Wardship is a blunt instrument. We all agree that it is very important that this be replaced by a new framework of support aligned to a person’s need. It is disappointing that this is taking so long and that is my biggest issue. It is welcome that we are seeing wee progress.

The guidance from the president of the High Court regarding vaccines and wards, together with the memorandum from the HSE, was a welcome development in assisting healthcare professionals in approaching the matter of consent. I had a lot of these representations during Covid. When it comes to this important public health measure, that was an issue I encountered. Many families came to me regarding vaccines during Covid. Perhaps the departmental officials could reply on that.

Could one of them go through the cost, if possible? I have concerns regarding the costs involved, which are not guaranteed under this legislation. For example, medical card holders are covered for any costs that had supporting documentation by doctors. However, what about those without a medical card? Is there a plan to make this affordable?

The report entitled Mind the Gap, compiled by researchers at the Centre for Disability Law and Policy and the Institute for Lifecourse and Society in NUI Galway and commissioned by the Ombudsman for Children, states that the supports offered under the Assisted Decision-Making (Capacity) Act apply only to adults, even though children and young people with disabilities might also benefit from specific and tailored decision-making supports, especially during this transition from childhood to adulthood. Is there any update on this? Is this being discussed, especially for a child who will soon become an adult?

I understand my next question has been brought up in respect of mental health. Will this Bill address the current system whereby people are detained in hospital for mental health treatment without a legal right to have their advanced wishes about treatment respected?

That is the bulk of my questions. The first ones are for the Department, then Professor Flynn and, finally, Ms Áine Flynn from the commission. I thank everyone for this information. It is really important that we try to get through this as quickly as possible and get this legislation passed.

We will start with either Ms Baxter from the Department.

Ms Carol Baxter

I thank the Deputy. We share her view that wardship needs to be abolished as soon as possible. We currently have priority drafting and a lot of work being done on the amendment Bills. We think it is very important to meet the June deadline in the interests of the relevant people whom we believe very strongly will benefit from this legislation.

In terms of the costs, there is very much a commitment that this will be accessible. The costs are not absolutely finalised, but they will be low. One of the overriding concerns of the Department is that this will be the case. The services of the DSS will be open and accessible to everybody. That is very much the case.

In terms of why the legislation is for adults rather than children, of course we recognise that children have complex needs, but the situation is that children have a radically different situation in terms of guardianship than adults. When someone is under the age of 18 at the moment, he or she is normally under the guardianship of a parent or another adult. Therefore, children do not have the same rights in terms of decision-making autonomy as an adult who is not ordinarily under guardianship. That was why there was very much the sense when the 2015 Act was being developed that the rights of adults, in terms of guardianship, are different. This legislation is, therefore, for adults.

Perhaps it might be useful to just come back on the consultation point. Pre-legislative scrutiny is absolutely crucial and we very much welcome the fact that the committee is engaging with disabled people’s groups. We see that as a very important part of the process. We also see this legislation as a continuity with the 2015 Act. We were very pleased at the time of the development of the 2015 Act that Professor Flynn and Ms Clíona de Bhailís were actively involved in the consultation processes. This is very much not new policy. It is the elaboration of the policy that was put in place to guide the 2015 Act. It is also very much an elaboration of the kind of lessons that we have taken from the work that the DSS is doing and what the NDA has learned in the consultations that it has had and, most recently, a major conference on the convention. In many senses, this legislation is a response and a listening to a long-standing consultation process. We very much take on board the fact that an easy-to-read version of the Bill would be very important. We will take that away. We are also very ready to engage with disabled groups to answer any queries that they may have on the legislation.

As Ms Áine Flynn has said, there are certain provisions that we are continuing to work on, including those relating to detention matters and, if possible, we will bring forward amendments on Committee Stage to deal with allowing the advanced healthcare directives to apply to people who come under the Mental Health Act 2001. I hope that is useful.

Ms Clíona de Bhailís

I will come in on the point the Deputy raised about the Mind the Gap report and the applicability of the assisted decision-making Act to those under the age of 18. Our thinking behind some of the comments in that report and in our recent submission to the committee was predominantly around the area of healthcare decision-making. Under the current law, although it is a piece of criminal law, it is broadly understood that 16-year-olds and 17-year-olds can consent to medical treatment. That is further reflected in our national consent policy and understood in that sense as well.

Other witnesses mentioned this issue to the committee yesterday in the context of mental health and the need to provide additional safeguards. Our thinking was that if we were, for example, to extend to this age group the guiding principles under specific parts of the assisted decision-making Act, such as the advanced healthcare directives, it would provide additional safeguards for the upholding of their rights and the provision of necessary supports they might use in a way they do not currently have. While they are seen to be able to consent in many instances and may be subject to capacity assessments because the functional test in part of Irish law and case law, and is possibly already in use, they may not have the presumption of capacity that is to be found under the assisted decision-making Act. They may not have the duty to take all reasonable steps and the other issues we find in there, which would be very welcome for them.

The committee heard in Professor Eilionóir Flynn's statement that we are not happy about the functional test and its compliance with human rights legislation. If we are doing it, we want to put as many other principles and safeguards in place as possible and further a culture of support and empowerment, rather than one of capacity assessments.

Ms Áine Flynn

I will pick up on one point the Deputy raised, which Ms de Bhailís also touched on. The Deputy made observations about the roll-out of the Covid vaccine campaign, which was a really interesting illustration of what should be the key precepts of this Bill. It was encouraging to see the words "will and preferences" used in the statutory instrument which gave effect to the delivery of the vaccine. It was a recognition that the preoccupation that can sometimes exist with accessing consent was satisfied in favour of ascertaining a person's will and preferences. The cultural shift which this Bill is part of is well under way.

I will pick up on the practical point around costs which the Deputy mentioned. We have heard clearly from the Minister that costs should not be a barrier to access to the supports under this Bill. Insofar as we have been able to influence what costs we charge, we have been concerned with ensuring they are minimal. There will, in fact, be provision for a waiver of the costs of the services provided by the DSS. We do not have control over other aspects, such as the costs of going to court, but I think the point that costs should not be prohibitive is well made.

The Deputy also mentioned an issue relevant to the Department of Health. People must access specific forms of capacity statement from medical and other healthcare professionals in respect of co-decision-making agreements and supporting documentation around enduring powers of attorney. We would also like to see assurance that those capacity statements are going to be available and that costs are not going to be an issue in that regard. Those are the key points I took from the Deputy's questions.

Unless another of our guests wants to come in on those questions, we will move on to Deputy Dillon. He is not there. I see there is a vote in the Seanad, in which case I will move on to Deputy Ward.

I thought the Chairman was saving the best until last. I have been sitting here and waiting. I was not expecting to come in. This is complex legislation, as most people have said already. I have a listening brief here but I have a direct yes-or-no question for Ms Áine Flynn from the DSS. We have heard calls for a register for advanced healthcare directives. Would the DSS want such a register in place?

Ms Áine Flynn

That is under Part 8 of the Act, which belongs, if you like, to the Department of Health. Under that Part of the Act, the Minister may provide regulations that would provide for notification of advanced healthcare directives to us in the DSS and allow us to establish a register of advanced healthcare directives. Our view is that would probably be an enhancement and would ensure that if somebody has planned ahead so their authentic voice can be heard and respected in relation to refusals of treatment, that document can be readily accessed. I think a register of advanced healthcare directives would be an addition in that regard. However, at present we do not have, and have been led not to expect, those regulations. The view of healthcare professionals is that it would be a good thing but we do not have those regulations and we do not see such a register being available in the first offering although we have planned for it. We have developed a register that would be available as soon as those regulations are put in place.

We heard at the meeting yesterday and in this meeting some contradictory information. Mr. Farrelly, for example, talked about extensive engagement with the diverse stakeholders during the process. Ms Flynn mentioned there was no public process organised by the Department to engage with disabled people's organisations. A couple of representatives of the National Platform for Disability attended yesterday's meeting. They felt they were excluded from the process and that their voices were not listened to. Does Ms Flynn feel that the consultation with people with disabilities that was in place was fair and adequate?

Ms Áine Flynn

I am not in charge of the consultation process around the legislation, as the Deputy will understand. Insofar as the function of the DSS is concerned, we have a mandate that has already commenced to provide information to engage and support the provision of information and guidance. Since the beginning of last year, the DSS has engaged with 78 different organisations across diverse sectors while always trying to prioritise the potential service users; the relevant people who are going to benefit from this Bill. I have met all the organisations that were represented at yesterday's committee meeting and we fully intend to continue to do so.

There has been much discussion, and very well placed comments, at this meeting about the importance of accessibility. It has been noted that people must have easy-to-read information available to them. We are also working on that. We have engaged with organisations with expertise around easy-to-read information and our materials will be further developed.

I will withhold comment, if I may, on the nature of this consultation process, which is not within our control.

My question was around the easy-to-read information. Are there any disabled people on the board of DSS as part of this process?

Ms Áine Flynn

We are under the auspices of the Mental Health Commission so our board is the board of the Mental Health Commission. The Mental Health Act is currently undergoing amendment, as the Deputy may be aware, and the Mental Health Commission has made submissions about the representative nature of that board that I hope will be attended to.

I thank Ms Flynn. My next question is for the representatives of the Department. The issue of restraints came up at yesterday's committee meeting. I listened to some of the language that was used during that meeting and found it was not very helpful. I was contacted today by a number of organisations, including Disabled Women Ireland. That organisation found the language being used last night disingenuous. Bed rails were used as an example in the meeting but they are not being used anymore, not because of capacity law or anything like that but because people simply climb over them and fall. There are many better solutions.

The power already exists in common law to restrain someone in an emergency. Do our guests believe that anything other than a prohibition of that would allow for additional powers to be read into this Bill?

Ms Carol Baxter

It is one of those complex areas. As I have said, we included in the 2015 Act provisions that were intended to highlight that restraint should only be used in exceptional emergency situations.

However, in fact, as we have said, they have been subsequently interpreted as permissive, so that is why we are removing them. It is very difficult to put provisions on restraint that will not be interpreted differently by different people. We did not want to communicate any kind of message in the legislation that we were being permissive in the use of restraint. The reason it is being removed is we could not stand over that.

Is Ms Baxter advocating for a total prohibition on restraints?

Ms Carol Baxter

It is one of those complex areas. It is going to have to be looked at much more carefully in the context of the Department of Health legislation on deprivation of liberty safeguards. We understand that the whole area is being looked at currently. They will be able to assess and decide in consultation with stakeholders what should be put into statute in this area.

The codes exclude references to mental health. Will they have to be redone to include mental health? Will the Department extend the provisions to people detained involuntarily under the Mental Health Act? It is the same for 16-year-olds and 17-year-olds. I listened to a speaker earlier refer to the decision-making autonomy of 16-year-olds and 17-year-olds. For physical healthcare decisions, a person has autonomy at 16 years. We are currently dealing with the amendment to the Mental Health Act in the Joint Sub-Committee on Mental Health. It looks like it will give autonomy to 16-year-olds and 17-year-olds for mental health treatment. My concern is that the Assisted Decision-Making (Capacity) Act will be behind the curve on this and that we will be playing catch-up.

They are my questions on the codes of reference around mental health and the provisions for people detained involuntarily under the Mental Health Act and for 16- and 17-year-olds.

Ms Carol Baxter

The extension of this legislation to people who are involuntarily detained is currently being examined with a view to bringing forward Committee Stage amendments in this area. That is under review. That has implications and there would need to be a code in that area.

In terms of the extension to 16- and 17-year-olds, there is nothing stopping informal practices, including by particular hospitals or centres, that would allow for persons in that age group to take decisions on their healthcare, but more broadly in society, parents take decisions until people are over 18. There is a distinctive break in terms of decisions in other areas of life between those who are under 18 and over 18. I refer to financial decisions, buying houses and across a range of areas. The legislation reflects that broader understanding that the person becomes an adult at 18 but it does not rule out informal arrangements or cut across the possibility of individual centres or hospitals providing for somebody of 16 years or 17 years to give consent on particular medical treatments.

My final question is directed to Mr. Farrelly. He mentioned that he feels the Mental Health Commission is a more compatible home for the DSS than the courts system. Were any concerns raised with him about keeping the service within the courts system? If so, who raised it and what was the outcome of that?

Mr. John Farrelly

First, why it sits with us and why we are happy with it is that we are privileged to be able to vindicate the rights of people who have been detained involuntarily or who have lost their liberty - things we take for granted. Over time, we had to build it in a way that we could budget for it and provide the service in a robust way. During Covid, all tribunals took place. We are used to delivering services. That is why we wanted the DSS, because we wanted it to deliver for the people of Ireland, people with disabilities and people who do not have, but may have, problems in the future.

In terms of the Courts Service itself, there would have been discussions at departmental level. The general sense is that this is not a criminal justice issue. I know this sounds very simplistic, but this is a human rights and individual health and social issue. People do not see it as a criminal justice issue. I know the courts are about more than that, but it is simply a case of it being separated out. People in wardships have been aligned to the courts for many years and they felt they wanted a more independent body.

I agree. Mr. Farrelly should never apologise for using simplistic language. Much of the comment last night was about some of the language within the legislation.

Dr. Iris Elliott

I want to come back on the issue of the developing capacity of children and young people. While the Department is correct in saying that there is clearly a cut-off before and after 18, it is recognised that capacity develops over a period and that children and young people are able to make decisions affecting different areas of their lives as they grow and develop. I would be reluctant to see it as an automatic cut-off.

Mr. Harris has referred to general comment No. 7 of the UNCRPD, which looks at the whole area of participation of children and young people with disabilities. This would be an important area that children and young people with disabilities are engaged in, in terms of the legislative provisions. I would like to see that reflected into the development of the legislation and possibly as an Oireachtas process as well. As Mr. Harris said, there is a lot of excellent guidance both in terms of the UNCRPD but also in terms of the UN Convention on the Rights of the Child, of which we are also mindful.

While I appreciate that informal arrangements may be put in place in different services, that is not where we would be coming from as the Irish Human Rights and Equality Commission. There are human rights provisions and equality provisions, and it is not enough to be left to the different practices within individual services. What we want is a consistent national approach, underpinned by statute and completely respectful of international human rights standards.

I thank Dr. Elliott.

Dr. Eilionóir Flynn

I wish to add to the discussion about restraint. I appreciate that this is a complex area and separate legislation on liberty safeguards will be forthcoming from the Department of Health. I would like to caution as well that liberty is a justice and human rights issue, and it would be appropriate for there to be widespread cross-departmental engagement in the development of that legislation and widespread public consultation as well.

On the requirement that was discussed last night, one of the issues with removing all reference to restraint from the legislation, as proposed in the heads, is that if the Act is silent on restraint people may interpret a power to restrain where there is, in fact, none. One option that should be given consideration would be to say that nothing in this Act provides any authority for an intervener under the legislation to authorise restraint, whether mechanical or chemical on a relevant person. While we are waiting, as a placeholder for further legislation in respect of protection of the right to liberty, having such a placeholder statement in the amendment to the legislation would be helpful in terms of guidance on the ground.

I apologise for coming late to the meeting. I thank the witnesses for their outline submissions and opening statements, which were very helpful. The engagement is very much appreciated. At yesterday's hearing I made the more general point that many speakers have reiterated that a problem with this process is that we are looking at draft legislation to amend an Act that has not yet commenced. Those of us who were involved in the justice committee hearings on what became the 2015 Act have a sense of déjà vu, therefore, in debating these issues around legislating for capacity and trying to create an appropriate statutory framework yet again. It is unfortunate that this is the way it is being approached.

Yesterday, we also heard of difficulties and concerns about cumbersome language given the nature of the process. I wanted to make that point again. Could I ask for a couple of specific clarifications? I apologise if they have been addressed in previous contributions. In the contribution from the Centre for Disability Law and Policy in NUIG, Dr. Flynn and Ms de Bhailís made the point about the gap in terms of the language around the eighth amendment.

I invite them to expand on that if they have not done so already. I have received some concerns about that, and I think other Members have as well, from other individuals and groups.

I refer to moving to a rights-based approach, which the IHREC and others have commented on. When we are talking about a rights-based approach there is a difficulty with the interface between the 2015 Act and the Mental Health Acts. I know we have already addressed the issue of how this will extend to persons in involuntary detention but I want to expand it. Perhaps one of the witnesses would like to come in again on that. Ms Flynn and Mr. Flaherty from the Mental Health Commission made a point on the DSS about the stand-alone legislation that is being developed by the Department of Health on protection of liberty safeguards for institutional settings. Can the witnesses say any more on that or give us an update? How will that complement or work together with this framework once it is completed?

I will start with Dr. Flynn or Ms de Bhailís and other witnesses can indicate if they want to come in.

Dr. Eilionóir Flynn

I will take this question and Ms de Bhailís can feel free to add to it if I leave anything out. I thank the Deputy for that question. We recognise that in the 2015 Act under section 85(6) on the advanced healthcare directives there is a provision which was necessitated at the time of the 2015 Act by the continued existence at that time of the eighth amendment to the Constitution. It states:

Where a directive-maker lacks capacity and is pregnant, but...does not specifically state whether or not she intended a specific refusal of treatment set out in the directive to apply if she were pregnant...the refusal of treatment would have a deleterious effect on the unborn, there shall be a presumption that treatment shall be provided or continued.

Similarly, there is a provision that even where the directive-maker has explicitly said he or she wants the refusal to apply where they are pregnant, even if it "would have a deleterious effect on the unborn", that cannot be respected without further application to the High Court to determine the validity of the refusal of treatment. These sections are simply unnecessary and can be deleted from the legislation. As far as we understand they were there because of the eighth amendment but they have no further relevance so they should not continue to be there. We are disappointed to see that they were not included in the list of sections to be deleted in the present heads of Bill.

I thank Dr. Flynn. That is very clear.

Ms Carol Baxter

I want to make a point of clarification for Deputy Bacik. That point on the intersection between advanced healthcare directives and women who are pregnant is being looked at by the Department of Health, as is the applicability of the 2015 Act to people detained under the Mental Health Act 2001. It may also be useful to make another point on the deprivation of liberty safeguards. The Department of Health has done an initial proposal which was subject to extensive consultation. The big difficulty is how to respond to the human rights needs of relevant persons and at the same time do a safeguard that is not cumbersome in itself or that does not necessarily always involve recourse to the courts. That can also be very difficult in terms of responding to the relevant people’s needs. There is no immediate policy solution in that space yet because it is so complex but that is what is being worked on.

Mr. Adam Harris

I will make some additional points to the Deputy’s question and then Dr. Elliott may wish to make a further contribution. We think there is a need for greater certainty in some areas about how the assisted decision-making Act will compare with the Mental Health Act. In some cases it would seem that the rights that are in place are less favourable to those that are granted within the Mental Health Act. I know Ms Finn has come back on the point on legal representation. It is clear that the right to legal representation is provided within the Mental Health Act. However, there does not seem to be the same level of statutory certainty on what that legal representation will look like in the context of the assisted decision-making Act.

On detention in the Mental Health Act, it is clearly defined that this cannot exceed 21 days. It is not given a clear timeframe within the assisted decision-making Act. There is a full right to appeal under the Mental Health Act, while there are a range of rights to limited appeal under the Assisted Decision-Making (Capacity) Act 2015. It is important that the rights extended to those under the assisted decision-making (capacity) (amendment) Bill 2021 have the same strength granted under the Mental Health Act 2001. There is a need for greater certainty on why there are differences in that regard.

Dr. Iris Elliott

We are available to provide further information on those matters to the committee after this session if that would be helpful. I want to revisit what Deputy Bacik mentioned about legislation that is developed and then not commenced, and the point that we are amending legislation that has not been commenced. Members will appreciate that as the national human rights institution this is a conversation we frequently have to have with the UN to explain that although on the Statute Book it looks like the work of the Oireachtas has taken place, and obviously it has in terms of legislation being enacted, it often is not commenced. I am mindful that we are anticipating a schedule review of Ireland in front of the human rights committee at the UN in June and July. We will need to explain to it that although it looks like we have a range of legislation in place, that legislation is not commenced. The position of IHREC is that it appreciates all the concerns with moving this amendment legislation through the challenge of timeframes etc. The position of IHREC is that this legislation needs to be commenced in June, appreciating that this may take a great deal of effort because it has already been delayed so extensively.

I also want to raise IHREC’s ongoing frustration at the lack of progress on the deprivation of liberty safeguards legislation. If there are questions around human rights standards and deprivation of liberty, IHREC made an extensive submission in 2018 and now we sit before the committee in February 2022. As the national human rights institution and the designated UN Convention on the Rights of Persons with Disabilities, UNCRPD, independent monitoring mechanisms, we are mindful that there is a range of legislation that the Oireachtas is engaged in that is expected will realise the human rights of disabled people in Ireland. We have assisted decision-making capacity legislation, we have the deprivation of liberty safeguards legislation and we are waiting for the inspection of places of detention legislation as well. There are multiple Bills that will create a robust and UNCRPD-compliant Bill. I appreciate the challenge there is, particularly with the work that is ongoing on the Mental Health Act 2001. If there is anything IHREC can do to assist the committee’s deliberations we would welcome that engagement.

Mr. John Farrelly

I will pass to Ms Flynn but I want to emphasise some of the points that might be missing in that. The law is imperative to change the culture. We are talking about different bodies outside Ireland. It is imperative that we change to suit external bodies but the culture in Ireland needs to change and that is why we want to be assessed. Many people like the status quo and this Bill gives a lot more liberty and power to people who have not had it for centuries. We talk about restraint becoming touchy and there is the idea of the deprivation of liberty. The law should apply equally to everyone and it should not matter. I should be treated the same way as any person. While we have a gap in this country and while some of our citizens are not treated the same way because they might not be able to vindicate their rights as much as I can, a cultural change is needed and that is as important as the legal and medical professions and any other professions. That is an issue.

Ms Áine Flynn

I want to pick up on the point about deprivation of liberty and colleagues have recited some of the history of that. That was originally to be dealt with by way of Part 13, which was going to be inserted into this Act. There was a public consultation at the end of 2017 by the Department of Health, which proposed certain deprivation of liberty safeguards.

We hope they end up being called protection of liberty safeguards, which would be a better starting point. They propose an intensively court-based process under Part 5 of this Act. I think all the submissions made in the public consultation asked not to do it that way. Quite a bit was done about rethinking that. We were involved in consultation with the Department of Health. Then, I am afraid, possibly Covid got in the way, but it needs attention and, as colleagues said, there will be a gap in the absence of those safeguards. Mr Harris referred to the AC v. Cork University Hospital case, which has amply demonstrated where that gap will be.

Access to legal representation will have to be available. There are access to justice guarantees in the UN convention. We do not need look to that convention for them, but they make it crucial that people have proper access to representation in court processes provided for under the Act. The Act provides for a scheme of legal aid on accessible terms to the relevant person under Part 5. We have been clear that----


Ms Áine Flynn

They should also have full access to legal aid when their cases are being reviewed by the wardship court. That will be important. Mr Harris referred to time limits for detention. That is within Part 10, which is still under review. I expect to see improvements there.

On rights to appeal, a declaration by the court under the Act that a person lacks capacity can be re-entered at the behest of the relevant person. It is not by any means a declaration for all time and has to come back before the court for periodic review. I hope there are robust safeguards already there.

I thank the witnesses. That is helpful.

On the first page of the submission from Dr. Flynn and Ms de Bhailís, it is stated many of the amendments will make it more difficult for a person to designate their chosen decision supporter or more challenging for a supporter to work in the way a person wants. Will they elaborate on that?

I ask Mr. Harris about the appeals. I always believe that in our processes and legislation there should be robust appeals. He touched on it in the previous set of answers but does he want to add anything else? He made a lot of excellent points in his submission.

I will make a point I feel I should make to the Department. We have been contacted by various groups with reference to the tight timeframe. While everyone is anxious and wants the legislation up and running, they are under pressure with that timeframe. The Department might not have a definite answer but we need to send the message back that, more than other legislation we have dealt with, there have been many calls on how tight the timeframe is and pressure that puts on people who want to engage in the process. We, as a committee, want to make sure we are engaging as much as possible.

Dr. Eilionóir Flynn

I will start and if Ms de Bhailís has more to add, I will ask her to do so. I gave an example earlier of requiring people to create two instruments instead of one, namely, an enduring power of attorney and an advanced healthcare directive. If the person wanted to designate the same person with responsibility with carrying out their wishes in respect of health treatment, it seems unfair for them to have to create two instruments to achieve that. I appreciate the intention was not to make it more difficult but to have clarity from the perspective of those viewing the different instruments; however, the unintended consequence may be to make it more difficult for the people creating the instruments, rather than those reviewing them or trying to determine their applicability. If the concern was about making sure someone who holds an enduring power of attorney can fully give effect to the person's will and preferences, including stopping life-sustaining treatment where the person wishes to give that power, a better way to achieve it would be to amend the provisions on enduring powers of attorney to clarify that if a person gives that explicit power to individuals, under that enduring power of attorney they are free to carry out their wishes.

Some of the challenges relating to bureaucratisation of the support that emerge from this process are at the intersection of the amendment Bill and some interpretations of the Act emerging in the draft codes of practice developed by the decision-support service, which are currently out for consultation. An area we are concerned about is the proposal to have an online registration of various agreements. Due to the digital divide, which is a serious issue for many disabled and older people, the requirement to have things like a MyGovID will make it difficult and inaccessible for many people and it will be a process that people feel they cannot engage with and they will give up at the first hurdle. Though that is not the intention, it is an unintended consequence that needs to be given greater attention. Having more engagement with the organisations controlled by disabled and older people and people with experience of mental health services would have perhaps led us to avoid this problem because those groups would have been able to say quickly that this would not work for many people.

It is important that there be a full process of ongoing engagement, not just in the progression of this legislation and development of the codes of practice the DSS is working on, but in the ongoing implementation, review and monitoring of this legislation at every level. That is critical to the success of the legislation and ensuring we bring it as close as possible to conformity with the goals of the UN convention. I have previously stated there are a number of gaps. I am happy to follow up with more examples, if needed.

Mr. Adam Harris

On the right of appeal, section 19 of the Mental Health Act sets out a clear and full right of appeal against the Circuit Court from the tribunal and onwards. An appeal can be filed within 14 days. The process of appeal is set out in section 141 of the Assisted Decision-Making (Capacity) Act, but it is set out in a limited means and only on a point of law. The legal advice available to IHREC indicates that it is of great concern that the appeal is limited to a point of law and we see this as an opportunity to remedy the deficit and provide for a full right of appeal from the Circuit Court and High Court for a wide variety of decisions they will be called upon to make under the 2015 Act. The right of appeal is particularly important as it will relate to detention under the Act.

Ms Áine Flynn

I will follow up some on some of the welcome points made by Professor Flynn on accessibility of DSS systems and the digital first approach. That was a clear learning from other jurisdictions we have engaged with, namely, England, Wales, Scotland and provinces of Canada. The advice was clear not to end up wedded to manual and paper-based processes as they became cumbersome and ultimately did not serve the person. We are mindful that an exclusive digital platform could be alienating and we do not intend that should happen. With that in mind, we have engaged with focus groups. We have procured the services of Inclusion Ireland to mobilise representative focus groups to look our systems and how people engage with us. So far, feedback is positive and people have been broadly receptive to the idea of engaging with this digitally. We think it provides better guidance to work through the documentation. We cannot help it, but the documentation is complex. The Act requires many levels to the process, for example, to register a co-decision-making agreement. We hope a digital format enables the user to be guided through more easily. That does not exclude the requirement for workarounds and we will provide for those.

Professor Flynn made the point well that everything needs to be kept under review. We have to be ready to come back and say what is and is not working, bearing in mind who we exist to serve.

Ms Carol Baxter

I will come in on two points. The first concerns the area of bureaucratisation.

We feel that, in fact, the key change to enduring power of attorney is very much a reflection of the importance that we attach in the amendment Bill to supporting a person to choose his or her decision supporter. Currently, an enduring power of attorney is registered only when the person has lost capacity, so any possibility of asking the person what he or she meant about a particular thing is lost. Under the new process, which is as a result of direct engagement with the Decision Support Service and the advice it has received from different jurisdictions, instead the person has capacity and is able to execute the enduring power of attorney and to register it so that any of the issues that arise or any lack of clarity can be teased out with the DSS while the person has capacity. It is much more responsive to the principle of the person being able to choose the decision supporter, and also to be very clear as to the decisions that he or she wants to put into an enduring power of attorney. We believe that is a clear example of the commitment to a more streamlined process that is much more responsive to the person's will and preferences.

In terms of June, we feel we have an opportunity and we have momentum. Witnesses have talked about the non-commencement of other legislation. We have the opportunity now to commence an important legislative measure, to get things finished and to get priority drafting. We have been working intensively through an interdepartmental steering group with the relevant organisations, including the DSS, which is crucial, the Courts Service, the Department of Health and the Department of Justice, so a series of organisations is teed up for June. Inevitably, if that is missed, we probably will get delayed for a significant period and we think that would really delay what is very important. The 2015 Act offers real benefits in terms of abolishing wardship and giving tailored decision supports to people. We urge the committee to do what it can to hold to the June deadline as a crucial piece of getting this important reform finally in place.

Do members wish to raise additional points?

I am not sure if I got an answer to one of the questions I asked Ms Flynn of the DSS earlier relating to the consultation process and disabled persons' organisations feeling left out of the process. I believe she mentioned that it was not under her remit. If not, who was responsible for that? Was it the Department? If it was the Department, can Ms Baxter answer the question? Does she think that the people with disabilities had adequate consultation in this process? On the point she made about momentum, momentum is great but I am also one of the people who believe that rushed legislation can be bad legislation. I would prefer it to be done right.

Ms Carol Baxter

We see the process as a crucial process in terms of consultation with disabled people's organisations. That is very important. As we have said, we are happy to engage with disabled people's organisations to brief them on the legislation. We stand ready there.

I thank Ms Baxter.

Do any of the witnesses wish to add anything or say something they feel they did not have an opportunity to say?

Professor Eilionóir Flynn

There are a few points that we did not get a chance to discuss in more detail that I wish to raise for the committee's further consideration. One is the amendment proposed in the Bill regarding the inclusion of disabled people on juries. We believe the language needs to be strengthened here and we explained how we believe it should be strengthened in our full submission. We are happy to make that available to anyone who would like to view it. In particular, we are concerned that there is a proposal, which was passed in the Disability (Miscellaneous Provisions) Bill in the previous Dáil, but this is not the previous Dáil and there is an opportunity to be more progressive now. It still includes language that singles out people with mental or intellectual disabilities when, in fact, the Assisted Decision-Making (Capacity) Act does not use any cognitive impairment descriptions in its text. We feel that is not compatible with the spirit and purpose of the 2015 Act and we would like that to be changed. I reiterate that for the consideration of the members of the committee.

Another issue we did not get a chance to talk about more is the provision relating to cases under the Act being heard otherwise than in public. Again, there is the proposal to change the Act's stance from what it was in 2015, which was that all cases should be heard otherwise than in public. The proposal in the amendment is to remove that so that all cases may be heard in public. We would like more clarification in the language here to ensure that the decision about whether a case is heard in public or otherwise than in public is taken primarily based on what is in the will and preferences of the relevant person. There may be situations where the person would wish the case to be heard in public but, equally, there may be situations where it would be very important for the person for the case to be heard otherwise than in public. We would like further consideration on that.

The final matter is bureaucratisation of support, on which there has been some discussion. We all want the Act to be successful. We all want disabled people, older people and people who experience mental health services to be able to use this legislation in a way that gives them greater autonomy and greater control over their lives. That was the intention when the legislation was drafted. To that end, we believe there may be a need for a further alignment with the Act of the draft codes the DSS is developing to move away from an approach to assessment of capacity that suggests that assessments of capacity can be conducted by a person who encounters the individual in a bank or a doctor's office or any other setting. Nobody wants to bring matters to court unless they need to be there but, at the same time, if we are talking about not respecting an individual's will and preferences based on somebody's assessment of the person's capacity, I would certainly prefer, if it was me, that a judge had overseen that and actually declared me to lack capacity before somebody was empowered to make a decision on my behalf, rather than somebody assessing my capacity in a community setting, perhaps on a bad day or perhaps without the relevant expertise, and making a decision to refuse to respect my will and preferences on that basis. It is very important, in keeping with the spirit and purpose of the Act as drafted and in compliance with the UNCRPD, that we try to get that clarity into the codes of practice, which will be the first port of call for many people trying to understand what their obligations are under the legislation.

I leave that on the table as a final contribution from us.

Ms Áine Flynn

I will start with the codes. I read today the Centre for Disability Law and Policy's detailed submission on the codes of practice that have been out for public consultation. All submissions will be taken on board. There is quite an amount of complexity with certain parts of interpretation of the Act. Some people have very definite views on what it says and means. The range of opinion is quite striking. Coming into the meeting I was concerned that perhaps we needed to bring further clarity to the matter of restraint, which received an amount of attention yesterday. I believe that has been achieved, so that we all are clear about what is intended about the removal around the provisions relating to restraint in very particular decision-support arrangements under the Act. It is not a broader statement on restraint at all, but I hope we have achieved that clarity today.

There were also some submissions yesterday about the desirability of a transitional period. I have engaged quite extensively with the organisation that submission comes from and I think, and I do not wish to presume, that is based perhaps on an apprehension that as soon as the Act is introduced things automatically have to become very formal and that everybody will be rushing to court to put arrangements in place. I do not think that is the intention and I hope I can provide better reassurance there.

There was also discussion yesterday about inordinately long time delays, to some extent, as I picked it up, informed by our demand forecasting. To reassure, we do not suppose that people will have to wait seven or ten years to become a decision-making representative, which was part of a submission yesterday but I hope I can engage further with the organisation in question to provide further reassurance.

Finally, from this meeting and from our broad engagement with stakeholders under this Act, I find it very encouraging to see the appetite for change. Much has been said about the cultural shift that this Act brings about. From my experience, this is well under way. It is not, fundamentally, an Act about capacity or new tools for accessing consent, it is not even primarily about the new and very welcome framework that the Act introduces. Primarily, it is about supporting people to have their own will and preferences respected and to be at the heart of the decisions that matter to them, and to support and enhance their opportunities to take those decisions themselves. I hope that everybody sees that as the starting point. The Decision Support Service, DSS, is more than happy to continue to play its part. We will deal with whatever legislation we are eventually handed. We will not be the owners of this Act, we will be servants of the Act. As Mr. Farrelly has said, a lot of work has been to done to build up a DSS, a lot of which is predicated on the Act as is and the Act as we expected it to turn out. It is probably appropriate to say that if we have to do a reset, there could be further delays flowing from that, but clearly we will respect the legislative process. We are happy to be of further service to this committee as necessary.

Mr. Niall Brunell

I want to take the opportunity to revisit one aspect of the discussion on safeguarding and deprivation of liberty. The topic has been well ventilated at this stage but it has been suggested that one could go further and look at a prohibition on restraint. Perhaps for the committee's future deliberations on this it might be useful to elaborate a little bit on some of the considerations that we had around that. It was something we considered and then we eventually found that on balance it was a more appropriate fit for the Act to remain silent on it. One of the issues that is quickly encountered when looking at a prohibition on restraint is the range of individuals who could act as decision supporters and the range of individuals, and different policy and ultimately ethical considerations around depriving any person of their liberty. At the hearing yesterday it was mentioned that there is a huge difference in somebody who is wrongfully restrained in certain circumstances - and in the vast majority of cases we would all agree that it is always wrongful to deprive somebody of their liberty. This becomes more complicated in a situation where, for example, somebody who has advanced Alzheimers is being cared for at home and, for their own safety, their children lock the door to the house. Legally that is depriving somebody of their liberty but in many cases it might be the appropriate thing to do. If we say that a decision-making representative, DMR, can never deprive somebody of their liberty, what if the DMR is the child in such an instance? The whole area becomes very complicated very quickly. It is not an area that we could look at in absolute terms. It does deserve its own dedicated piece of legislation and its own considered policy response. Similarly, deprivation of liberty has arisen in the context of the Mental Health Act. The Irish Human Rights and Equality Commission has also spoken about this. Assisted decision-making is first going through the legislative process and a number of instruments across the system which will be needed for further UNCRPD realisation including reform of the Mental Health Act and protection of liberty safeguards being won, and there is a long and ongoing and very close conversation between the Departments involved on which aspects of which articles are appropriate to which specific Acts. On balance, it was decided to take out deprivation of liberty or protection of liberty from this Act because the Assisted Decision-Making (Capacity) (Amendment) Bill 2021 is about assisted decision making and it quickly becomes complicated by bringing in other concerns that deserve their own dedicated policy response.

Mr. Adam Harris

I will make some final comments and then Dr. Elliott would also like to come in. The conversation we have had today is very complex, and we should not lose sight of the impact of the wardship system on people today, and the impact the system has with every day that we delay commencing the legislation. In many respects we have been speaking of a seven-year delay, but in reality we are talking about Victorian legislation. We are talking about change that is long overdue. The commission has consistently raised significant concerns about the non-commencement in full of the Assisted Decision Making (Capacity) Act. We believe that this delay is in many key respects the main issue that needs to be resolved. In our view, it is essential that there is not another delay beyond the June period. For far too long the wardship system has remained in place, which is completely out of kilter with contemporary human rights and equality norms, and especially the modern understanding of the concept of personal autonomy. It is really urgent that we move to the new supported decision-making framework without further delay.

Having said that, there are complex issues to be worked through. Perhaps the committee should look to the ability of the Oireachtas to work through complex issues very quickly during the Covid-19 pandemic. As this conversation continues we need to realise that this is the first step in the legislative process, and the remaining stages offer an opportunity for further refinement of the new regime without giving rise to further delay. It is critical that this process is in line with general comment No. 7, directly and in an accessible way to engage disabled people and our organisations, and also recognising that under general comment No. 7 there is a role for family voices as well. It is always possible for lingering issues to be addressed subsequently by amendment or clarified in court proceedings if required, but we urge that we move forward with the commencement of the Act without any further delay.

Dr. Iris Elliott

As commission member Mr. Harris has said, this is our opportunity to end Victorian legislation on the system of wardship. One thing the commission would like to draw the committee's attention to is the opportunity to include a sunset clause on section 9 of the Courts (Supplemental Provisions) Act 1961 to ensure that the ending of wardship is entirely copper fastened and that there is no way back by any other route into a wardship system.

I was mindful yesterday that a number of committee members raised the concern that delay on this legislation may then delay ratification of the optional protocol, and that this is seen as an important milestone in that journey. I want to use this opportunity to welcome the continued focus on the optional protocol for the Convention on the Rights of Persons with Disabilities, CRPD, and to reiterate the commission's long-standing position that we are calling for the State to issue a timeline and a detailed map for how we are going to get the optional protocol ratified.

I was also mindful yesterday that there was quite a lot of comment on the high percentage of disability services that are provided through the community and voluntary sector. Where those services are provided through public bodies obviously the public sector and equality and human rights duty comes into play in ensuring that those services adhere to equality and human rights standards. As the commission has repeatedly said, procurement processes also need to ensure that human rights and equality standards are adhered to by providers of disability services by the community and voluntary sector.

We also heard a lot of concerns raised about a lack of awareness or understanding of the law and the operation of that law by service providers. There is also a lack of awareness among disabled persons themselves around the legislation, that the legislation is coming along and, when it is in place, how they will know about it. I note that they CRPD has an article on awareness raising. As commission member Mr. Harris has said there are obligations on the State under article 4 to ensure that people with disabilities and their family members are aware of their rights.

We do not want to see a delay in the commencement of the 2015 Act or any delay the progress of this Bill. We fully appreciate that this is going to take a lot of intensive work by this committee and by the Oireachtas. I commend the Oireachtas on engaging with the public sector duty that is on the Oireachtas, and the inclusive practices that we have the through the commission's engagement with a number of Oireachtas committees, namely this committee, the Committee on Disability Matters and the Sub-Committee on Mental Health. We would really encourage the Oireachtas committees and the Oireachtas system to continue to consider how those inclusive practices can be built on, particularly when we are entering a period where there are quite a lot of calls on people with disabilities and their representative organisations to participate in parliamentary processes. I thank the committee.

Dr. Eilionóir Flynn

I appreciate the complexity of discussion on restraint, and I will not labour the point, but I do want say that there is decades of research now, and particularly from people who are in those relationships with people including family members and others who support people and know best how to support them in very challenging and difficult situations.

They find there is always an alternative to restraint and there are ways to work with that. I encourage the committee to take that on board in its final report on this issue. I echo Dr. Elliott's remarks on the optional protocol. It is clear to me from my experience working directly with and for the secretariat of the UN committee on the rights of persons with disabilities that legislation such as this is not necessary to enable Ireland to ratify the optional protocol. Indeed, if Ireland were to ratify the optional protocol right now, it would be absolutely accepted. If this legislation is being presented as a necessity to enable the ratification of the optional protocol, the committee would be wise to question that and seek more clarification on it because that is absolutely not my understanding of the process for ratification of the optional protocol.

I thank Dr. Flynn and all our guests. It has been a really interesting discussion, as was the case yesterday. The meeting yesterday was our first of several on this issue. As has been mentioned, it is complex but is it great to have the opportunity to consider it and the time to allow for questions and answers because it brings more clarity to our work. We really appreciate it. I thank the members of the committee. We hope to work with our guests on this issue going forward.

Is it agreed to publish the opening statements for the meetings today and yesterday to the website? Agreed.

The joint committee adjourned at 7.22 p.m. until 5.30 p.m. on Thursday, 3 March 2022.