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Joint Committee on Children, Equality, Disability, Integration and Youth debate -
Tuesday, 15 Feb 2022

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

Apologies have been received from Deputies Murnane O'Connor and Phelan, and Senators Ruane, Keogan and Seery Kearney.

Today, we are undertaking pre-legislative scrutiny of the assisted decision-making (capacity) (amendment) Bill 2021.

I welcome to the meeting representatives of the National Platform of Self Advocates. We are joined by Mr. Joe McGrath and Mr. Dermot Lowndes. We are also joined by Mr. Peter Kearns, project co-ordinator of the Independent Living Movement Ireland. The National Federation of Voluntary Service Providers is represented by Dr. Alison Harnett, who is the chief executive, and Ms Teresa Mallon, chair of the assisted decision-making reference group. Mental Health Reform is represented by Ms Fiona Coyle, chief executive, and Ms Ber Grogan, policy and research manager. Family Carers Ireland is represented by Mr. John Dunne. We have a good range of people with us to discuss the Bill. I welcome those with us here in the committee room and those who are joining us remotely. On behalf of the committee, I thank our guests for their preparation work for the meeting and the information they have given us in advance of the meeting, which we will discuss. It will greatly assist us in highlighting any issues there might be with the provisions of the proposed Bill. We will take a short break at 4.30 p.m. because this will be a long meeting. People will have a chance for a short, ten-minute break at 4.30 p.m.

Before we begin, there are certain procedural steps I need to go through, relating to the rules. The first item is for the attention of the members of the committee and relates to their presence in Leinster House in order to participate in public meetings. Members can be physically present in the meeting room or can remote in from their offices. If members are not either physically present in the meeting room or remoting in from their offices, they will be aware at this stage that they cannot participate in the meeting. They can listen in but they cannot ask any questions.

If anyone who is remoting in via Microsoft Teams experiences any sound or technical issues, there is a chat function on Teams so I call on them to let us know of their difficulties that way. We conducted a number of checks and practice runs and everything went smoothly, which is not always the case in live sessions. I call on anyone who experiences any issues to let us know. The chat function is only for occasions when someone needs to tell us something urgently or if someone is experiencing a technical issue. It is not for people to make their own general comments or statements during the meeting. I ask people who are remoting in to keep their devices on mute until they are asked to speak. We like people to have their cameras switched on and we always ask people to be mindful that we are in public session.

The next piece of advice is for anyone present in the committee room. There has been some easing of the restrictions around Covid-19 but we are asking people to be vigilant about their mask-wearing, hand hygiene and everything else.

At the start of each meeting, I must advise everybody about parliamentary privilege. For people who are on the premises and here with us in the room, everything they say is protected. If someone says something about a person who is not present here today, I might have to ask him or her person to stop speaking about that particular matter. If I ask anybody to stop speaking, it is important that person complies with that direction.

Those people who are remoting in may not have the same protection because they are not physically present in Leinster House. However, if there is any issue I will tell the people concerned. I ask people to co-operate in that regard. Does anybody have any questions before I go onto the next section? No. That is very good.

I must read a section about parliamentary privilege before I ask others to speak. Witnesses are protected by absolute privilege in respect of the presentation they make to the committee. That 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 Chair, to ensure the privilege is not abused. Therefore, if witnesses' statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks and it is imperative they comply with any such direction.

For witnesses appearing virtually through Teams, I must point out that there is uncertainty whether parliamentary privilege will apply to their evidence from a location outside the parliamentary precincts of Leinster House. Therefore, if they are directed by me to cease giving evidence on a particular matter, it is imperative they comply with any such direction.

Those are the formal proceedings over with. I will ask our guests, in the following order, to give their statements. We will start with Mr. McGrath, followed by Mr. Kearns, Dr. Harnett, Ms Coyle and Mr. Dunne.

Mr. Joe McGrath

I am a committee member of the National Platform of Self Advocates. The platform is an organisation for people with intellectual disabilities run by people with intellectual disabilities. On behalf of the platform I have worked as a co-trainer with the centre for disability law and policy in Galway to teach staff in disability services about this law and what they need to do to get ready for it. I have been doing this for the past four years.

This law is very important for us but we have not been given enough information about it. Since the law was passed seven years ago, no one from Government has told us what we need to do to get ready for it. Now the Government is planning to make more changes to this law before it will be up and running. The Government published a document with these changes that is almost 200 pages long. The language used in it is very complicated so we do not know what these changes will mean for us. This is not good enough. Everyone has the right to know what the law means for his or her life. There should be an easy-to-read version of the law so that we can understand it for ourselves. Because there is no easy-to-read version, I worked with Professor Eilionóir Flynn in the university in Galway to figure out what these changes will mean for the platform and our members but there are still a lot of changes that are very technical and hard to understand.

Some of the changes the Government wants to make are good, such as changes to how complaints are handled, how expenses of people making decisions are paid and how a support person can be stopped by a judge if they are doing a bad job. I think the decision about whether a court case is heard in private or not should depend on what the person with a disability wants. It is good that the Irish Human Rights and Equality Commission, IHREC, wants to recognise its disability advisory committee in the law. However, I disagree with some of the changes the Government wants to make. I do not think people should be allowed to share information about a person with a disability without their consent unless a judge says it is okay.

Our privacy is very important to us.

People with intellectual disabilities should not be ruled out of being on a jury just because someone thinks they cannot understand what is happening in court. The National Disability Authority, NDA, does not need to be named in the law about the Irish Human Rights and Equality Commission, IHREC, monitoring the Government on disability rights. Other changes should be in this law that are not there right now. The law should make sure that people in charge, such as the Minister, the Decision Support Service and IHREC, talk directly to people with disabilities and the groups that represent them, such as the platform, to understand what we need to make the law work for us.

The Decision Support Service should write a new code of practice for people with disabilities to explain what the law means for us. It should also write one to explain the law to our families. Many of the changes the Government wants to make to the old law will make it harder for people with disabilities to stay in charge of their own lives and keep making decisions. I do not worry about people like me who can speak up and say what we want but I am worried about what might happen to people who are not able to talk for themselves.

The Government has had considerable time to come up with the changes it wanted to make to this law since it was first introduced seven years ago. However, in all that time, the Government has not talked directly to people with disabilities to find out what changes we want to see. In the platform, we want to make sure that any changes to this law make it easier for people to make decisions and get support if they want to, not harder. We want the Government, the Minister, the Department and the Decision Support Service to listen to and work with us. Nothing about us, without us.

We will come back to Mr. McGrath for some questions in a little while. We have some other opening statements and then there might be a few questions for him.

Mr. Peter Kearns

The Independent Living Movement Ireland, ILMI, very much appreciates the opportunity to contribute this spring afternoon. Unfortunately, I will start by saying that given the importance of the Bill and the scale of the legislation, the timeframe placed on responding by January this year placed undue burden on disabled persons organisations, DPOs, such as ILMI and others, to organise proper collective, participative spaces to fully review the legislation. It was a great chance to contribute to the discourse around the legislation but we were under undue pressure in terms of time.

I will follow up by telling the committee what the ILMI is. We are a disabled persons organisation run by disabled people. Our board is made up of disabled people and our members are disabled people. We also work with the social model of disability and the medical model. I gave a workshop to Sligo County Council this morning on the medical model and people with cerebral palsy. The medical model focuses on the impairment label, whereas the social model focuses on the disabling barriers that restrict us from taking part as citizens in the mainstream or in our local communities.

We feel that the current assisted decision-making (capacity) (amendment) Bill lacks any effective references to social model language and values. Over the years, we have pushed for recognition of words and language in terms of the Bill. We also feel the Bill needs to recognise the disability equality role to support disabled people to fully make decisions that will impact on their lifestyle choices. We feel that specific reference needs to be made to the role of the Assisted Decision-Making Capacity Act to ensure the autonomy of all disabled people is upheld. That autonomy should be over and above any impairment label or baggage that goes with that impairment label.

ILMI appreciates that we do want the necessary amendments, as the Bill includes a number of necessary amendments to enable full commencement of the Act. However, there are issues that we would like to address, especially around the role of the UN Convention on the Rights of Persons with Disabilities, UNCRPD. As a DPO, we see that as having the potential to really enable the Act or the idea that the Act is an active one with all headings being made with reference to the UNCRPD.

Also, because we are a disabled persons organisation and are working on the social model, the intersectional aspect of disability equality and its impact on the Act could be explored in terms of the day-to-day roll-out. Intersectionality refers not only to disabled people, but to gender, class, ethnic background, religious belief, family and socioeconomic status. The assisted decision-making (capacity) (amendment) Bill has that recognition of the intersectional role and how it is carried out.

With that idea in mind, I would like to give my own experience of intersectional and impairment-label baggage. When I was 15 years old, I thought I had escaped a State special school.

From the age of two until the age of 12, I was in a special school in posh Sandymount. Every day I got a special bus from Coolock to Sandymount, so that has given me my lofty ideas. At 12 years of age, I managed to make my way to Ballymun comprehensive, which was the first secondary school built with access for disabled people. At the age of 15, I was quite cool. I was in third year and had long hair down to my shoulders but, suddenly, my parents got a letter in the post saying that I had to be brought back for a day to the special school. We went back for a day and found out that a top respected psychiatrist was suggesting that - this was the late 1970s - a new drug had been discovered that would help me with my impairment labelled cerebral palsy, CP. That new drug was valium. The psychiatrist said I was supposed to take this new drug. At 15 years of age, I had already seen that disabled girls and boys who were on the drug were uneasy, lethargic and depressed. Addiction to the drug was long known; it was known that valium was an opportunity for addiction. I pushed against it, even though my mother, on the psychiatrist's suggestion, hid the tablet in my porridge or mashed potatoes. I found it and pushed against it. Eventually my parents decided this was not going to work. They dropped the idea and pushed him to change the drug. That drug then disappeared off the radar in terms of disabled people. It just shows the experience of disabled people. There is a clear requirement that disabled people on the ground with an impairment can have the choice not to have to take treatment suggested or even heavily pushed by so-called experts.

Also, the other thing about will and preference is that will and preference can quite often go against the best interests and duty of care. In terms of my own best interests and duty of care, I eventually got into Dublin City University, DCU, but I chose to drop out. That was against my interests. I chose to work in an anarchist theatre group for two years in Amsterdam. That was definitely against my best interests. I came back and did an English literature degree in Trinity College for four years. It was a fantastic four years but there is not much work with an English degree, so that was definitely against my best interests. The idea of will and preference being far more important to disabled people than so-called experts or professional best interests needs to be recognised as well.

Under the UNCRPD, there is the connecting of the different articles of United Nations conventions. In this context, Article 12 deals with equal recognition before the law and Article 14 deals with the liberty and security of the person. There needs to be specific reference in the assisted decision-making capacity, ADMC, legislation to the aim of the legislation to ensure the autonomy of disabled people to live the lives of their choosing, so the legislation states one will be entitled to different paths from the so-called best interests. The ADMC needs to support that.

Then there is the DSS access. Any additional costs are highlighted in the cost of disability research. Disabled people have €9,000 to €12,000 extra costs per year on top of their expenses. Any additional cost to access the ADMC should be recognised and supported so disabled people can successfully and effectively exercise their rights under the ADMC. As a disabled persons organisation, we recognise that the Assisted Decision-Making (Capacity) Act 2015 was there to help the UN ratification in 2018. My general opinion is that the ADMC has great potential to reflect the UNCRPD. I worked on the UN convention in New York during the 2000s with the DPOs and NGOs in the basement of the UN building. Human rights is always at the forefront under the obligations of the 2018 ratification. We feel that ADMC should really reflect that human rights narrative pushed by the DPOs and NGOs when they were working on the convention nearly 20 years ago.

Also, the DPOs should be recognised as having a role in respect of ADMC, as well as equal recognition before the law, liberty and security of the person. We also would say regarding the DSS in terms of practice and codes of practice, it is a great opportunity for capacity building and enabling the Disability Support Service to encourage and facilitate disability equality training for dominant care, disability equality training for family members and guardians and disability quality training, more importantly, for young people and disabled people requested from the DSS.

In conclusion, I thank the committee for the opportunity and encourage any questions. Our philosophy is "Nothing about us without us" and "Rights not charity". What we want is will and preference in terms of living choices, an active and early lifestyle from baby right up to teenager, young person and adult - will and preference at every life stage - and that the agencies recognise that. Independent living is a jigsaw. It not just one thing but a number of things that fit together. The jigsaw includes messy ideas, messy decisions and mistakes as well. Will and preference for disabled people is not just always a clean and simple policy; it is a journey and an exploration. As I said, I am very thankful for this opportunity and will answer any questions.

I thank Mr. Kearns. We appreciate that. There will definitely be questions when we reach that section of the meeting.

We will call on him at that stage. I invite Dr. Harnett to make her opening statement.

Dr. Alison Harnett

I thank the committee for this opportunity to meet with it to discuss the assisted decision-making (capacity) (amendment) Bill. The National Federation of Voluntary Service Providers is a national umbrella body of not-for-profit organisations providing direct supports and services to people with intellectual disability, ID. Across 57 organisations, our members support approximately 26,000 children and adults with intellectual disabilities and their families. As two thirds of disability services are provided on behalf of the State by the voluntary sector, we welcome the invitation of the joint committee to discuss this legislation which, as we have heard, will be of enormous importance in the lives of people with intellectual disability.

We welcome the focus of the joint committee on hearing today from individuals with lived experience, family members and service providers supporting people with disabilities. The UN Convention on the Rights of Persons with Disabilities recognises that "persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them". Article 3 of the convention places a responsibility on the State to meaningfully consult with people with intellectual disabilities in an accessible format. The implementation of the Assisted Decision-Making (Capacity) Act will be a significant positive milestone in the State’s progress towards ensuring that individuals with disabilities enjoy equal legal capacity in all aspects of life, as envisaged in Article 12 of the UNCRPD. As Mr. Kearns outlined, its focus on supporting the will and preference of the individual offers a transformational opportunity in terms of how people with intellectual disability are legally supported in their rights to make choices fundamental to their lives. It also has the potential to be a catalyst for society to develop a growing understanding of the capacity of individuals to make such choices and be respected in their decisions.

As time is short for this opening statement, there are a number of interlinked themes we wish to highlight. Many individuals with intellectual disability have lifelong support needs around decision-making, so there are considerable implications from this legislation for the people we support, the staff and the families with whom we have long-standing relationships. It is important, therefore, that the legislation, its implementation and the codes of practice are equally suitable and accessible for those with lifelong decision support needs as much as those who encounter them at particular stages in their lives.

A key concern is that more restrictive approaches will be brought in unintentionally on foot of the legislation. It is, therefore, essential that the spirit of the Act is safeguarded. For instance, our members have expressed concerns for several hundred people with intellectual disabilities, often those who have lived in institutional settings for a long period, who might have very few supports in terms of family and friends and may struggle to identify decision supporters. As set out in the Act, paid staff cannot take on these roles. This may have the unintended consequence of pushing people further up the scale of decision supporters, such as to the decision-making representative, which would be more restrictive than the spirit of the Act. We would welcome the committee's focus on this issue to ensure people for whom this is relevant are not disadvantaged by the measures set out in the legislation.

Education, guidance and ongoing support for relevant people under the Act, their families, service providers and wider society, such as the banking sector, medical professionals etc., is critically important in the implementation of the Act and in adherence to its principles and intention. However, the cultural change required will only work if this education, awareness and support is co-ordinated nationally. It is essential that independent advocacy is adequately resourced to support people where required as implementation progresses.

Early communication on the implications of this legislation and the meaning of the Act for people with intellectual disabilities, including those who are wards of court, will be essential and will require a targeted and fully accessible campaign of training and information, as Mr. McGrath has outlined. The legislation will have a very significant impact on people’s lives. Without early communication, it is likely to lead to anxiety and concerns in respect of next steps. There are adults with intellectual disabilities who are currently wards of court and there are also some young adults living in the care of the State who typically become wards of court when transitioning into adult services if there are safeguarding concerns that apply. We would welcome clarification on the alternative process for these young people who will come through the transition period after the commencement of the Act, as well as for those currently in the ward-of-court process.

There is a significant requirement for support to families in the context of this legislation. For many people with an intellectual disability, their primary supporters are family members, many of whom are continuing in primary carer roles into later life. Our research indicates that more than 1,250 people are supported in the family home by a primary carer who is over the age of 70, at least 400 of whom are over the age of 80. It is essential that the structures for decision supporters are accessible to these family members. For many, a digital-only platform will not be accessible. For some, the onerous reporting requirements will be difficult. There is a need to examine how these families can be appropriately supported, and for detailed planning in respect of how the Act will affect people primarily supported by family members, some of whom are ageing or may have their own health or decision-making challenges and concerns or both emerging.

It is already becoming clear that substantial work will be required within disability services in terms of training, policy and practice. We recommend that an impact assessment is carried out on the implications of the Act for resourcing in disability services, as there will be significant requirements that need to be put in place to ensure people with intellectual disability have full access to their rights under the legislation. It is vital that the importance of existing informal decision supports is emphasised in all communication strategies. This should include key staff members who know the person well and are currently often involved in supporting the person’s choice, will and preference, as well as communications etc. Their knowledge, interaction with the person and expertise should be included as a key source of information and support, although only, of course, where that is the person’s wish.

The timing of the consultation process on the legislation and draft codes of practice during the current wave of infection of Covid-19 has not allowed for as sufficient a level of detailed analysis across our organisations as would be required for full consideration of legislation of this gravity and with such particular relevance to the people we support who have an intellectual disability. While we are cognisant of the urgency of the legislation being brought through the House, we recommend that the codes of practice be fully reviewed after the first year of implementation to allow for consideration of their operation in practice and for the identification of key issues to be addressed.

Without access to options, choice cannot be meaningful. For instance, the choice of where and with whom we live is a fundamental life decision. It is an area in which access to will and preference is essential, as set out in Article 19 of the UNCRPD. Today, more than 2,000 people with intellectual disability remain living in institutional or congregated settings and more than 1,000 people under the age of 65 are inappropriately living in nursing homes for elderly people. There are many more people with intellectual disabilities who have not chosen where or with whom they live, and many express significant distress on a daily basis due to the incompatibility of those living together. The funding and resourcing of the required supports to meaningfully address the rights-based approach to providing choice to people with disabilities across living, education, employment and other areas must be considered in the planning for the implementation of this Act, as this will be a key driver of access to will and preference for people with intellectual disabilities.

We thank the committee for the opportunity to meet with it on this important topic and to put forward our experience of supporting people with disabilities in the context of the forthcoming legislation.

I thank Dr. Harnett. We will be coming back to her with questions when that section comes up. We now move to Ms Coyle for her opening statement.

Ms Fiona Coyle

Ba mhaith liom buíochas a ghlacadh leis an gCathaoirleach agus le baill an choiste as an gcuireadh teacht in bhur láthair inniu. Mental Health Reform is Ireland’s national coalition on mental health, with more than 75 member organisations working together for progressive reform of mental health services and supports in Ireland. Mental Health Reform is a member of the Disability Participation and Consultation Network and other key disability stakeholder forums.

We welcome this opportunity to take part in pre-legislative scrutiny of the Bill. This legislation can and must be instrumental in giving a voice to people with mental health difficulties in decisions that directly affect them, including in their own mental healthcare and treatment. The importance of individuals being listened to and being active partners in their own mental healthcare is a core component of our national mental health policy. In line with the UNCRPD, the rights of people with mental health difficulties or psychosocial disabilities must be protected.

There are three key proposed areas relating to mental health that form the focus of our contribution this afternoon.

I will first draw the committee's attention to the area of advanced healthcare directives and Part 4 of the Mental Health Act 2001. As this legislation currently stands, persons detained involuntarily under Part 4 of the Mental Health Act 2001 are excluded. They do not have the right to have their advance wishes about treatment respected. Without changes to this legislation, people who are detained in hospital for mental health treatment have no legal right to have their advance wishes respected, even though they had capacity to make decisions about their healthcare and treatment at the time of making their advance healthcare directive. There is no other group of individuals that is specifically excluded from this legal right. This exclusion is in violation of international human rights standards, including the UNCRPD. Research shows that advance healthcare directives can reduce involuntary admissions, promote recovery and be cost effective. It is essential that advance healthcare directives should be provided for all people on an equal basis, including those who are detained in hospital for mental health treatment. Section 85(7) and section 136 of the Assisted Decision-Making (Capacity) Act 2015 need to be amended to ensure provisions around designated healthcare representatives can operate and to ensure parity of treatment for those with mental health difficulties.

Second, I will highlight the issue of provision for 16- and 17-year-olds. Mental Health Reform has highlighted a lacuna between the heads of Bill to reform the Mental Health Act 2001 and the Assisted Decision-Making (Capacity) Act 2015. We greatly welcome Part 8 of the mental health (amendment) Bill, which is to provide for 16- and 17-year-olds to give or withdraw consent to treatment in mental health services, if they are deemed to have capacity. The heads of Bill state that the Assisted Decision-Making (Capacity) Act 2015 would apply for the purposes of conducting the necessary capacity assessments. However, the Act and the amendment Bill before the committee do not provide for decision supports for under-18s. We hope that a remedy will be found as a matter of urgency to ensure the rights of young people aged between 16 and 17 in making decisions on their mental healthcare are protected.

Finally, I will note the codes of practice for mental health. Mental Health Reform notes the significant amount of work being undertaken by the decision support service. Section 103 of the Act provides for the development of codes of practice. It is important that mental health is given prominence in all documents. We would like the committee to note that the draft code of practice on supporting decision-making and assessing capacity does not currently contain any sample scenarios for people with mental health difficulties. We respectfully request the committee recommends the inclusion of mental health in all aspects of implementation of this Act. Mental Health Reform also supports the calls of our colleagues, in particular those in disabled persons organisations, and others, that the codes of practice be reviewed within one year of their implementation. This would also give an opportunity to align the codes with the reformed Mental Health Act.

In conclusion, I commend members' colleagues, and some who are present, on their work on the Oireachtas Sub-Committee on Mental Health, which is undertaking pre-legislative scrutiny to reform the Mental Health Act 2001. We acknowledge the Minister of State at the Department of Health, Deputy Butler, and her officials for the work they have done to date in this area. In respect of this important interlinking legislation, we also wish to acknowledge this committee, the Minister of State at the Department of Health, Deputy Rabbitte, and her officials for their work. Too often, mental health difficulties are seen as separate and different, and the same rights and protections are not extended to people who use mental health services as to others. We urge committee members to ensure mental health is not sidelined in the discussions and that key recommendations are part of this process.

I thank Ms Coyle. Again, members will probably have questions for her.

Mr. John Dunne

I thank the committee for the opportunity to contribute to its pre-legislative scrutiny. Mr. McGrath made a comment at the start of the meeting that he is not worried for himself as he is perfectly capable of speaking up for himself, but he is worried for the people who cannot. Mr. McGrath and Mr. Kearns represent the people who will have the most to gain from this legislation, which is very welcome, but we must remember those who cannot speak for themselves, even under this legislation. Dr. Harnett made a point about the importance of staff in disability services and the relationships and insights they have. The fact of the matter is the most important cohort of supporters for people in that situation are their families and family members.

Family Carers Ireland is the national charity that supports family carers, of whom there are approximately 500,000 in Ireland. A wide spectrum of people care for loved ones, which includes children or adults with physical or intellectual disabilities, frail older people, those needing palliative care, and people living with chronic illness, mental ill health or addiction. Every family carer wishes the best outcome for, to use the words in the legislation, their "relevant persons", and they all want this legislation to be a success but we are well past talking about aspiration. We are now looking at the letter of the law, or the letter of the Bill at least. As an organisation, we have significant concerns in this regard. I will highlight three of them to the committee.

The first comes under the heading of "imminent risk of serious harm". Head 27 of the Bill proposes to delete the provision in the 2015 Act relating to the use of restraint in private settings by decision supporters. When I said I would raise this, I was told to be very careful because it is a sensitive issue. Lest this conjures up images of people locked in rooms, tied to radiators, in straitjackets or hiding in wardrobes, the reality is a good deal more mundane. In order to keep somebody safe at night who is at risk of wandering, for example, the front door is locked. That is a form of restraint. There might be a stair guard for somebody who is unsteady on their feet and would otherwise be at risk of falling down the stairs if he or she tried to go up them by himself or herself; that is a form of constraint. Most alarmingly, it is already illegal in the UK for a nursing home to put a side rail on a bed because for some reason we have to vindicate the right of people to fall out of bed. In nursing homes in the UK, this was solved by having staff calling in and checking on people regularly. The most recent round of cuts means those staff are now gone so the best they can do, and it is in not much of a solution, is to put another mattress on the floor. If someone falls out of bed they will, hopefully, land on the mattress not the floor and will not be too badly injured or too cold before somebody finds them. Those are the practical implications of what we are talking about with this legislation.

If committee members think I am being reckless about this, the original Act spends a good deal of time putting limits and restrictions, such as time, procedural and tests of reasonableness, on the "decision-making representative". It was quite clear that restraint would only be used in a situation where it was reasonable to assess that there was "an imminent risk of serious harm to the relevant person or to another person”. We are now proposing to delete this based on a consultation with an experts' interest group. I do not know what experts were consulted, but I can tell the committee no family members were. The extraordinary thing is, if this amendment goes through, the only way I can see to deal with a situation where somebody is at imminent risk of causing serious harm to themselves or somebody else is to put them into institutional care because it is no longer possible, legally, to do it at home. I cannot believe that is the intent behind this amendment, but that seems to be the effect of it.

To add insult to injury, the heads of Bill also note that the use of restraint in institutional settings will continue to be governed by relevant legislation and guidelines. Our understanding, and I am open to being corrected, is that current guidelines on deprivation of liberty in institutional settings have not been amended to reflect the provisions of the 2015 Act and that this will not have happened by the time the legislation is commenced. Therefore, what seems to be proposed is that in order to safeguard the rights of the person at home around restraint, he or she will be put into an institutional setting where the safeguards provided by the legislation will not be in place. To be clear, the wording is quite explicit. It makes a distinction between the legislation and the guidelines currently prevailing because there will be a difference between the two and there will continue to be until there is a legal challenge. If this amendment goes ahead, we expect several different types of legal challenge to arise quite quickly.

The second issue I want to flag relates to head 25 of the amendment Bill. I must claim some credit for it because five years ago, I was talking to people involved in this field and beginning to learn about it. I was intrigued by something because it all seemed to be based on the wards of court system. The wards of court system largely depends on the fact that any services that are provided through the wards office are billed to the ward, who usually has a large chunk of money. I asked what happens when the money runs out. Nobody was terribly clear about that but it does seem that the volume of supports provided diminishes. The second thing I asked was what happens if there is no large pot of money because wards of court make up a very small minority of the number of people we are going to be talking about. Nobody seemed to have thought about that. Happily, we now have an amendment to deal with it. If there is no fund for a ward of court, the Decision Support Service, DSS, will use public money to pay the decision-making representatives, DMRs, but only if the representative is nominated from the DSS panel, in other words, if the representative is not a family member. The DSS estimates that about 67% of DMRs will be family members. They will not be paid. They will have the same duties and will have to submit to the same accountability responsibilities but they will not be paid. This seems to us to be a case of clear discrimination on the basis of family status. I would like to make that point given that discrimination is another of this committee's briefs.

Our third major concern with the Bill, which is probably the most serious one, is a bit like the shoe that did not fall. It relates to something the Bill omits rather than something it contains. We have been asking since 2014 for a transition arrangement for lifetime caring families equivalent to the one provided for wards of court under the original Act. There are 4,000 wards of court. The system is allowed three years to transition them to the new model. The DSS's own estimate of need for DMRs in 2022 is in excess of 18,000. Five years ago, we estimated it at 20,000 so we were not that far off. A total of 18,000 people, and it is not a matter of wanting because the word used by the DSS - "need" - is explicit, will need this service. The good news is that 1,605 decision-making representatives, or about 9% of estimated need, will be appointed in its first year. At this rate, it will take ten years for people to be transitioned to having a decision-making representative. Given that the spirit and intent of the legislation is to only make decision-making representative arrangements where absolutely necessary, what is going to happen to somebody who needs a decision-making representative but find himself or herself at the back of a ten-year queue? In the absence of a clear answer to this question, we have been asking straight out for five years and have never got an answer. The first confirmation we got that our estimates were right was a report published by the DSS last month about projected need and demand. All it said was "well we're going to need about 18,000, the good news is we'll have less than one tenth of that dealt with in the first year but hey ho". There is no comment on the gap between the two. There needs to be some provision for a transitional arrangement in the legislation. I thank the committee once again for this opportunity to contribute to its deliberations and I will be very happy to discuss any of those points later on.

I thank the witnesses for their contributions, which were very informative. We appreciate their presence today. My first question concerns a reference in Dr. Harnett's statement to early communication on the implications of this legislation and the meaning of the legislation for people with intellectual disabilities, which she said will be an essential part of this. How would she foresee this type of communication happening? Who would be responsible for it?

My second question is for Mr. Dunne. In his opening statement, he referenced three important concerns. Could I get further clarification on feedback and consultation with the Department and the Minister because they seem to be very important matters? I will wait for a response to those two questions. My last question is for Mr. McGrath and Mr. Kearns.

Dr. Alison Harnett

I will endeavour to answer Deputy Dillon's questions to the best of my ability and invite Ms Mallon to jump in if I have missed anything. From what Mr. McGrath has said, it is abundantly clear that people with an intellectual disability feel the need for accessible communication around this legislation and what it will mean for them. I mentioned that it is really impactful and important that all people with intellectual disabilities understand ahead of time what it will mean for them. Wards of court make up one particular group of people for whom this legislation will bring about significant change in their lives. Across the board, people need to know what this means for them before it happens in order that their fears and anxieties can be dealt with and their questions answered. Beyond people with an intellectual disability, people with a disability in general would really welcome an understanding of what the legislation means. We have engaged with the DSS in respect of how this can be done. In other regulatory forums, there are things like FAQs and explainer videos that help to bring people through vignettes or examples that might be particularly helpful in pointing out things that might happen.

Unfortunately, we are already aware that there is quite a lot of misunderstanding about the Act. We have some examples from within our services. I can give the committee one example to illustrate what we are talking about. A person wanted to open a bank account, and there are plenty of examples of this, but the person's sister was not particularly happy that the person did want to open a bank account. The bank then referred the matter to a GP saying that a capacity assessment had to be done. The capacity assessment was carried out by a GP with the sister present and the GP wrote to say that capacity was not present and that the person should not be allowed to open a bank account. There was a misunderstanding of the Act and its meaning at all levels - the person, the sister, the bank and the GP - all of whom had misunderstood the assumption of capacity and working in terms of supporting people's will and preference. If we could have really good examples in a neutral space whereby we could point all stakeholders to the same information and explain what the legislation says and means, it would take some of the conflict out of it because we could all talk together about the right way to support people's will and preference.

In our engagement with the Decision Support Service, we have had a positive response to the idea of developing resources, such as video training or frequently asked questions that could be pointed to in an objective manner. For example, in cases where a bank is looking for a capacity statement on a person, a GP is making such a statement about a person or where the question might be arising for such people themselves about what their rights are, those resources would be very useful. It is important that the vignettes or examples that are provided are complex enough to speak to people's lived experience. As for who might do that, the Decision Support Service will need to be resourced to carry out a lot of that work. There are plenty of other stakeholders who would be willing to support the action. The point that I am making is that if it is left, for instance, to individual organisations that support people with disabilities, then there will be a lot of opportunity for conflict and misunderstanding at a local level. What we want is a nationally co-ordinated structured campaign of awareness-raising, support, training, education for staff in our services to understand families, as Mr. Dunne has described, and for people who have lived experience. I hope that answers Deputy Dillon's question. If there is anything else I can add, I ask him to come back to me.

Mr. John Dunne

The first thing to say is that the imminent risk one is new. Until I started reading the Bill, frankly, we had no indication that was coming. In terms of our experience, that probably sums it up. Other people have said it, too. This Act was passed in 2015. There was some communication beforehand, to be fair. The civil servants in the then Department of Justice and Equality were quite proactive in going out and engaging. Since then, there has been total radio silence. Any time we have plugged in, we have been told people are very busy in working groups designing things and we will have to wait to see the outcome. There certainly has been no engagement. I was struck by the reference that in making the change in legislation about the imminent risk, the Department had listened to the stakeholders. It had not listened to us and we would consider our organisation to be a significant stakeholder.

On the question of decision-making representative expenses, it is fair to say that the attitude of the Decision Support Service, which is responsible for the administration of the scheme, is that it is entirely a matter for the Minister, which it probably is, but the wording of the current legislation does not include it. We have not engaged with the Minister about it. That is not for want of trying. We have written to several Ministers over the years, mainly raising the question of demand and how the courts were meant to cope. We have never got an answer, even to reminders.

The fundamental issue in terms of the response we have encountered has been around the spirit of the law. Very early on in the consultation process, we organised a meeting for some senior figures in shaping this legislation with a number of carers. One of the carers, Damien, was a psychiatric nurse and therefore not a person without some skills, who had retired and given up work to care full-time with his wife for his two profoundly disabled daughters. In the context of talking about the legislation, he said that hand on heart, he would love to know if his daughters would prefer cornflakes or Rice Krispies for breakfast, but there was no way of telling. Somebody looked him in the eye and told him that really, if he was doing it right, he should be able to know. That is the spirit behind this legislation. At the same meeting we talked about a transition phase for families. It should be noted that a family will have been caring for a person for 18 years before they are covered by this legislation. We are not talking about a trivial investment by the family. When we raised the issue of a transition phase for families at the meeting, we were told that families are wonderful, but they cannot really be trusted. Our response to that is, frankly, thank you very much, State. We all know that the public sector is wonderful but it cannot really be trusted. At the end of the day, that is the nub of the problem.

We are told routinely that there is no such thing as a next of kin. I am not a lawyer, but I did study law back in the good old days. My understanding is that we operate a common law system. There are various sources of common law, including custom and practice. The note which tells us that there is no such thing as a next of kin, almost tut-tuts at the fact that unfortunately, this is a very prevalent issue. There are even forms in hospitals that mention next of kin. I would have thought that there is a fair bit of custom and practice around next of kin. Why does next of kin matter? It matters because when this legislation is commenced, a light switch goes off. The current grey area around next of kin, as it were, disappears. That is fine. The two profoundly disabled, non-verbal and non-mobile daughters to whom I referred earlier, who are unable to use technology, are assumed to be competent under this legislation. We are the only country out of 147 countries implementing the UN convention that has adopted the approach of assuming everyone is competent and working backwards from there. Everybody else sought to shore up existing rights and entitlements on the basis of getting to the standard the HSE decides. One could argue that in the long run, the net result will be the same. One certainly cannot argue that the transition phase between the two is the same. In Damien's case, he has to wait around seven years before we gets to be a decision-making representative. If he brings his daughters to the doctor, his daughters are now judged to be competent under the legislation. The doctor is no longer legally able to discuss the daughter's medical needs, medication or whatever else with Damien or his wife. That is the legal effect that we are putting into place. We all know that families are wonderful but they cannot really be trusted.

We got an invitation to attend a meeting with the Mental Health Commission to talk about this issue. We said we were happy to do it. We were asked to bring along clients or designated persons. We said that the people who we really want to talk about, at the end of the day, are not going to be able to do much by way of evidence-giving on the topic. The commission told us that that was who it wanted to hear from because it liked to be authentic. We told the commission that to be clear, we would wheel in two non-mobile, non-verbal people and they would look at the members in person or on a screen. We asked how long the meeting would last and what would happen after that. The invitation has not really followed through. To be fair, it probably will, especially after today. That is our experience of trying to engage on this issue.

I have one final question for Mr. Lowndes, Mr. McGrath or Mr. Kearns in relation to the difficulties they have encountered.

Mr. Dermot Lowndes

I will refer to the difficulty I experienced when I was in my day service. If we talk about the Assisted Decision-Making (Capacity) Act and this Bill, the staff in our day service tell us they do not have time. My experience of the law in Ireland is that members of the Garda are brilliant. Something happened to me and my sister and I had to go to court. The minute the judge heard that I had a disability, he showed me out. He told me to get down. If I robbed a car tonight and crashed it, they would not back me up. They would throw me in jail and throw away the key. There should be a law that the day service has to be in the law, know the law and help service users with the law. I had an experience with my mother that made me very bitter and angry that the law did not come to help me. All the help was for my mother and my sister. There was no one to help me. I feel very angry and bitter about that. I am over it now. There should be a law for people with disabilities and an ombudsman that goes into these organisations. If you report abuse, they do not want to know. The cases are thrown out of court. Nobody fights for us. They look the other way and walk away.

First, I wish to thank all of the contributors for their helpful and insightful contributions. In particular, I thank them for giving us the benefit of lived experience. I thank Mr. Kearns for telling us the story of his education and childhood.

It is really important that we hear his voice and the voices of others. What comes across most strongly from reading the submissions and listening to all of the contributions is the frustration that, "Here we are again." As a Senator on the justice committee some years ago, I participated in the hearings on the 2015 Act. I know others will share my feeling of déjà vu to be here again, debating how best to legislate for capacity and assisted decision-making in the context where that 2015 Act, as everyone has pointed out, is not yet fully commenced and here we are talking about amending it. It is no wonder Mr. McGrath, Ms Grogan and the rest of the witnesses spoke about the frustrations they feel and the cumbersome nature of this amending Bill that is proposed that is, again, proposed to amend something that is not yet commenced. Unfortunately, we have a very bad Irish legislative history of doing this, namely, bringing forward amending Bills to legislation that has yet even been fully commenced. The Children Act is another case in point. I am very sorry that all of us, particularly all of the witnesses, are having this experience. The Government has now promised this will be commenced for June 2022 with the amending Bills. That timeframe is quite tight and, again, the witnesses have pointed out the issues that have caused for themselves and their organisations. We certainly hear that.

I just wanted to briefly address some of the flaws or issues that the witnesses highlighted, which was very helpful to us. I think it was Dr. Harnett who talked about the more restrictive, unintended consequences that may result. How does she think that point should be addressed? I believe it was Ms Coyle and Ms Grogan who spoke about issues for young people and the rights of younger people. Again, what should we be doing to address that in the Bill? Mr. Dunne talked about other jurisdictions that have dealt with this in a different way. Is there a key lesson or some key improvement we could make to this cumbersome statutory framework drawing upon best practice elsewhere? Finally, we really hear the issues everyone has raised about cumbersome language, inaccessibility and the need to communicate. We hear that loud and clear and will certainly be incorporating that in our report. I thank everyone and would love to hear a little more from them on those points.

I think the Deputy's questions are initially for Dr. Harnett, Ms Coyle and Mr. Dunne. Will Dr. Harnett start please?

Dr. Alison Harnett

Circling back to the unintended consequences, an example we have given is that there are many people – we have done a survey so we know there are many hundreds – who were institutionalised because the State many years ago thought and informed people that the best solution was an institutional life. We now know that is not the case but, unfortunately, many people were brought into that situation and sometimes were brought quite far away from their families of origin. Many of the arrangements that people are living in have been quite isolated from the natural circles of support.

Under the Bill and under the Act, paid staff members are not permitted to be decision supporters. There could be a person who has very few people in their life from their natural support networks of family and friends or, perhaps, somebody for whom an elderly family member would find much of the onerous reporting requirements more than they would wish to take on under the Decision Support Service. Those people might have the capacity to make decisions about, for instance, their finances, with a decision assistant, who would just be gathering the relevant information and making it understandable, or as a co-decision-maker, who would be alongside the person, supporting him or her in making his or her decision. Under this amendment and Act, the only option open to a person who does not have a natural support network person who can take up the decision supporter role is to have a decision-making representative, which is someone who makes decisions on such a person’s behalf. Even if someone has the capacity to make his or her own decision on finances, as an example, because it is time and decision-specific, but needs to make a large decision, he or she would have the capacity to make that decision with an assistant or a co-decision-maker. This Act is only providing that person with a decision-making representative. Therefore, we are very worried that the spirit of the Act, which is meant to help someone to be as independent as possible in making decisions, will actually not be reflected in the practice because a decision-making representative is at a higher level than needed. Therefore, there needs to be a deep reflection on what that potential impact might be for people supported and defined. Not being a legal expert, I am not sure what would be the right way around it would be. Perhaps it could be made possible to have decision assistants or co-decision-makers within the Act from a panel. That part perhaps would be for other people to have a view on how to fix it but certainly, we can see how that would not be working.

If it is okay. I will refer back to a previous question and Mr. Lowndes’s comments in relation to Deputy Dillon’s query around the information needed. Mr. Lowndes was talking about the need for staff to have time to work with people. In our submission, we have also called for an impact assessment for the resources that are required to make this real. It is not possible to support people in their decisions without having ample and adequate time to do so. We need to understand people’s will and preference. Often, people have communication challenges or particular support needs around their communication and it is not a trivial matter. Therefore, we feel there is need to look at the resources that will be required to do this properly in order to make it meaningful. What Mr. Lowndes is talking about is that people need time to be listened to. I fully support what he was saying on that.

I thank Deputy Bacik for her question and I hope that answers it.

Ms Fiona Coyle

I thank Deputy Bacik for her questions. On the points that I brought up, for a long time, Mental Health Reform has advocated to reform the Mental Health Act to recognise the rights of 16- and 17-year-olds, as is recognised in other parts of our legislation, to inform their own mental healthcare decisions. We welcome that in the current heads of Bill on the reform of the Mental Health Act, it includes the provision to give 16- and 17-year-olds a right over those decisions. However, we query the fact that there is insufficient safeguarding in place for 16- and 17-year-olds and, in particular, the reference to the legislation the committee is scrutinising, which we all know does not have a provision for 16- and 17-year-olds. It is a gap that urgently needs to be addressed. We need to ensure that there is not a deficit in terms of children’s rights. The other relevant point to make in this context is that there is not a national advocacy service in place that supports children and young people when engaging with the mental health services and other services provided by the State. In the absence of that, it is very important that we look at the Bill before the committee in relation to how it can ensure that safeguarding is in place.

It is the same in respect of the points that I raised on the advanced healthcare directives. Again, with regard to the Mental Health Act, we very much welcome the fact that they have really gone further in the drafts and wish to move to ensuring parity of esteem in relation to advanced healthcare directives. However, there needs to be changes made to the Bill in front of the committee to achieve that, and that is actually noted in the notes on the mental healthcare reform Bill. We were very disappointed not to see that in the Bill in front of the committee and we urge it to take those two points on board as recommendations. It urgently needs to be addressed in relation to that other crucial piece of legislation.

I now call Mr. Dunne. I see that Mr. Kearns has his hand up, so I will come to him after Mr. Dunne.

Mr. John Dunne

I am not sure I would say there is a different way of approaching it. The die is cast and we have the 2015 Act. It is based on the presumption that everybody is competent all of the time until a court rules that they are not and that this assessment, except in certain circumstances, can only be a temporary one. It is a very shifting pile of sand to be building something on.

It is significant that 140-odd other countries decided not to go that route, but we have taken it. To be fair, we are part of the coalition of the willing. We want this to work. We are happy to work to try to make it work. We believe that, in the long run, it is capable of working. We do not have an issue with any of that. We hear major alarm bells with regard to how we get from here to there because, based on the DSS numbers, it is going to take at least ten years. To be frank, the law will be a mess during those ten years. I would not be surprised if it collapses under the weight of its own internal contradictions during that time. We will then have an even bigger mess because we will have a whole lot of people who are established under the new legal system while the legal system itself is under attack regarding its inconsistencies. I do not have a solution to that. I am willing to work constructively. I am just trying to point out the most immediate and glaring difficulties. If I had the rest of the day, I could provide another 25, but these are the big ones.

Mr. Peter Kearns

In terms of decision reporting by staff, I would just like to tell a quick story about an intellectual disability nurse in the north west who was one of my disability equality students in St. Angela's College nursing department. She was in a residential home for more than 20 years and was dealing with a working-class woman of her own age. She hated working with her because the woman would not do what she was told. To come to the disability equality training, research and the role of disabled people's organisation, that woman was in one day and asked the disabled woman whether she wanted to take her medication. The woman said "No" so she recorded on paper that the woman had made the choice not to take her medication. For 20 years, she had been recording that the woman had been refusing to take her medication. That simple change in language changed her whole relationship with that woman. She realised that the woman was much more than an imposed label of intellectual disability and that she had quite an interesting intersectional background. The two of them started a journey together to build a healthier understanding of that woman's rights. It is not only about decision makers. It is about how those decision makers build capacity to recognise that people are not just an impersonal label but interesting in themselves.

At the start, I said that there would be a very short break. We still have four members who have questions. We will take a five-minute break. To let members know, when we come back the order will be Deputy Ward followed by Deputy Cairns, Senator McGreehan and Senator Seery Kearney.

Sitting suspended at 4.33 p.m. and resumed at 4.42 p.m.

I call Deputy Ward.

I am pleased to contribute on this important legislation. I am aware this meeting is being signed and I would like to use some sign language. My niece, Caitlin, who uses sign language sat me down last night and showed me how to do a little sign language. I want to use the following sign language to welcome the representatives of the deaf community to this meeting. That is important. As Mr. McGrath said earlier regarding integration and equality, we need to include everybody as much as possible in these meetings. I hope I did not let my niece down as I would be in trouble on that score if I did.

My first question is for Mr. McGrath. He mentioned he was calling for the Decision Support Service to write a new code of practice for people with disabilities and to explain what the law means to people like himself. Has he had any engagement to date with the DSS and, if so, what have been the benefits of that? His final sentence - "Nothing about us without us." - makes perfect sense to me.

Mr. Joe McGrath

If the person being supported by the decision maker is not directly asked the questions, how in the name of God will the decision maker get to know me and the decisions I want made? If I am allowed to drive a car and can practically do so, I could drive the car without a licence but I need the paperwork, namely, a licence, to prove I can drive it on the road. We have not had any information from the decision makers on who will be making a decision on the law. Nobody has spoken to the platform or me, nor have I seen any information in newspapers, radio stations, RTÉ or any of the broadcasting stations that would cover this Bill. Some of us like to listen to the radio to hear news coverage of what is in happening in the world, especially in the world of politics. We do not have much trust in the Decision Support Service or the law as we were not included from the start. How can we trust something in which we were been included in the first place?

I appreciate Mr. McGrath's answer. My second question is for Ms Coyle or Ms Grogan. Part 8 of the legislation and the lacuna between the Mental Health Act and this Bill was mentioned. I am a member of the two committees dealing with those two items of legislation. As a layperson, it is difficult to get my head around what is involved. We heard that it was hoped a remedy would be found to ensure young people aged 16 and 17 had the right to make decisions on their mental healthcare. What would that remedy be? I would like to hear any suggestions the witnesses may have.

Ms Fiona Coyle

I will ask my colleague, Ms Grogan, to take that question.

Ms Ber Grogan

I was supposed to attend in person today but Covid-like germs came along and I thought it was better to stay home. It is lovely to link in and hear from everyone. I thank Deputy Ward for his question. He is probably sick of listening to us talk about this issue at this committee and at the Joint Sub-Committee on Mental Health. Basically, the reform of the Mental Health Act will amend the Non-Fatal Offences Against the Person Act, which allows 16- and 17-year-olds to consent to or refuse treatment for physical healthcare, but there is no such amendment allowing 16- and 17-year-olds to do likewise with respect to their mental healthcare. The reform of the Mental Health Act is in progress but who knows when it will be commenced.

Section 84 of the amendment Bill before us deals specifically with an advance healthcare directive, which refers to a person aged 18 years or over. That reference could be amended to include 16- and 17-year-olds. There would be wider implications were the whole 2015 Act to apply to 16- and 17-year-olds because much of that legislation relates to property, wealth and estate. We are seeking parity of esteem in respect of decisions on healthcare. That would involve either amending section 84 of Part 8 of the amendment Bill to provide that 16- and 17-year-olds could make those decisions or including in the amendment Bill an amendment to the Non-Fatal Offences Against the Person Act, given that it provides for small technical amendments to five or six Acts. There are loads of ideas.

I thank Ms Grogan for that. In layman's terms, if the Bill is not amended and the Mental Health Act is amended to include 16- and 17-year-olds in decision making, what is the danger? What could happen with the two different Acts?

Ms Ber Grogan

I will answer that. I cannot see Ms Coyle on my screen. The Chairman can advise me to mute my device if she needs to do so. The danger arises when assessing capacity. In the context of all the different ages, under the 2015 Act, there is presumption of capacity. Depending on a person's circumstances and the mental health crisis or difficulties that person is experiencing, his or her capacity might be questioned. The reform of the Mental Health Act is forward-facing, human rights-focused legislation but it refers to capacity assessments in the 2015 Act. We had a human rights analysis paper done on the reform of the Mental Health Act. We raised this issue because of the lacuna relating to capacity assessments for 16- and 17-year-olds, which are not included under the 2015 Act.

Dr. Harnett and others indicated that the draft codes of practice should be reviewed in a year. What should the review look like and who should conduct it? Would it be independent or would it be carried out by the HSE or Tusla? Whoever it might be, I wonder what Dr. Harnett's thoughts are on the matter.

Dr. Alison Harnett

There is a great urgency in bringing the legislation through the Oireachtas. We understand and support that. With regard to the amount of time provided for consultation on the codes of practice, there was a quick turnaround over the Christmas period when we had the wave of the Omicron variant. For the DPOs and self-advocates, accessible information was not made available quickly enough. We, as service providers, were dealing with the most significant wave of Covid to date and up to 30% of our staff were off during that period. We had a six-week period, which included the Christmas period, to bring people together for a deep, meaningful engagement on the implementation of the codes. As service providers - for other groups it will be in different ways - we did not have the depth of consultation time we required for such important legislation, which will have so much impact on people's lives.

A review is necessary. We have talked about some unintended potential consequences on the ground. We have also talked about different ways that people need to be engaged with accessibly. There is plenty of potential for continuous improvement of how the codes will operate. After a year, there will need to be a multi-stakeholder consultation, which will need to be accessible. If we take the development of the recent housing strategy and the way the Housing Agency has engaged with DPOs - it provided accessible information, video explainers and a lengthy period of time to allow people to engage - that has been a model of good practice. Something along those lines, where everybody takes a co-production or collaborative approach to ensuring the people whose lives are impacted - the families, the people who support them, service providers and wider society - have an opportunity to provide meaningful input into that process, would be what I would recommend. That would allow us to look at unintentional consequences that may arise on the ground when we get these codes into operation.

What has emerged this afternoon across the board is that this is of enormous importance and complexity at the same time. There could be plenty of things that we will not know until we see this operating. It may be necessary to go back and ensure we have a chance to amend anything that needs to be amended. That would be our recommendation.

I call Mr. Dunne followed by Mr. McGrath.

Mr. John Dunne

I agree with pretty much everything Dr. Harnett said, except I would say I do not see why we must have an arbitrary deadline of June if we need to get this right. The consultation around the codes of practice was farcical in terms of the amount of stuff dumped in the system just before Christmas. People had been working on these matters for the past five years, so a lot of work had gone into this.

We were involved in one of the advisory groups that drafted one of the codes - I will not say which one. The group of technical experts - we were representing the customer end of it - was shocked at what came out as the code because it was not what went in as the advice. Even there, there has been a significant change. The people who were tasked, as experts, with drafting the code do not recognise what is there. There is no time to do anything about that because we are all working towards this deadline. While I see the need to introduce the legislation as soon as possible, I do not see the need for an arbitrary deadline.

Mr. Joe McGrath

I agree with Dr. Harnett. My point is that we were in lockdown for two years and some of us do not have Internet in our homes. How can we get on to the website of a support service or whatever other website is available to us when we do not have Internet in our houses or anything like that? Some of us need to meet face to face and if some members have access to technology, they can educate others about the Bill. There needs to be proper consultation with advocates, parents and a good number of others who have a stake in this. There is no point in people debating in the Dáil what should be in the law if they do not consult the groups. They would be wasting their time and would have to rewrite the legislation in ten years' time, even if I have retired from advocacy work.

I am on the same page as our guests when it comes to the arbitrary deadline. I have stated previously that this is a rushed process. While this is important legislation, it needs to be done properly. Mr. Dunne mentioned some of the unintended consequences, for example, regarding guard rails, which were not on my radar. I thank all the witnesses for sharing today.

I thank our guests for being with us today. This legislation is an opportunity to ensure people with disabilities, people with mental health difficulties and others will have guaranteed input into decisions that affect them. However, it obviously has aspects that are of concern to representative groups. We obviously all agree on the importance of the legislation but it is essential that it is done correctly and with the best interests of those it intends to support at its heart.

I will start with two questions for Mental Health Reform and the Independent Living Movement, after which I will ask some further questions if there is time.

That is not a problem. The Deputy should direct specific questions to the relevant witness.

My first question is for Mental Health Reform, so either Ms Coyle or Ms Grogan. In its written submission, Mental Health Reform called for the Decision Support Service to maintain a register of advance healthcare directives. That is a statement individuals can make on the type of medical or surgical treatment they want or do not want if they are unable to make these decisions in the future. I presume the concern is that in emergencies, where a person has lost capacity due a mental health crisis, how would the healthcare professional be aware of an advance healthcare directive without such a register. I ask Ms Coyle or Ms Grogan to elaborate on the importance of amending the Bill to provide for registering AHDs to the committee. The questions on what specific changes can be made with regard to 16- and 17-year-olds have been answered.

For the Independent Living Movement, my question is for Mr. Kearns. The written submission referred to the absence of reference to what decisions assisted decision-making capacity will support disabled people in making. Mr. Kearns stated there is a need to explicitly reference, for example, advanced care directives and choice of where and with whom you live, and the full expression of human experiences, including the right to relationships. It is important for the committee to hear Mr. Kearns elaborate on the importance of explicitly including these references in the Bill.

Does Mr. Kearns wish to respond to that question first?

Mr. Peter Kearns

I thank Deputy Cairns for her question. It is around the will and preference and the capacity-building of disabled people to make effective preference choices. On the linking of the ADMC with the UN convention, the articles are good on effective participation and how to go about it. If we leverage the capacity-building of disabled people with DPOs, it will be a role of the DPOs to give confidence to disabled people to make effective preferences and also to separate it from the baggage that goes with people's impairment label.

I thank Mr. Kearns. I ask Ms Coyle to respond to the Deputy's other question.

Ms Fiona Coyle

Ms Grogan can add to my reply if more information is needed.

As we know, an advance healthcare directive is a statement to set out a person's will and preference for care and treatment when he or she has the capacity to make those decisions. As one can imagine, that can be really important for those who may be receiving inpatient mental health treatment in the future. In our written submission, we echoed a point that was made by the director of the Decision Support Service in relation to the fact that currently, there is no provision for the DSS to hold a register of these advance healthcare directives. As the Deputy pointed out, if there was a situation where a person is unable to communicate his or her will and preference, the clinician or advocate will not know that something is in place. It is very logical to insert that piece into the legislation to give the authority to the DSS to ensure there is a register. That way, that register can be consulted. We feel that is a straightforward suggestion that would ensure the rights, the will and preferences of those with mental health difficulties, in particular, are considered. There may be a time when a person is unable to communicate his or her will and preferences. The register would put in place a process where something that the person has laid out is accessible and is followed. Otherwise, he or she may be simply engaging in a process whereby a document is put on a shelf somewhere and nobody will ever have access to it. It is a really important point. Perhaps Ms Grogan wants to add to that.

Ms Ber Grogan

As it stands, the legislation provides for the director of the Decision Support Service to keep a register of the decision-making support agreements. When Ms Áine Flynn appeared before the Joint Oireachtas Committee on Disability Matters in May 2021 to discuss this legislation, she specifically said it would be useful and helpful to have a register of advance healthcare directives. I believe the delay is around the issue of a unique identifier. We are members of the HSE implementation steering group. From the meetings we have had, we know there is widespread support for a register for advance healthcare directives. I believe representatives of the DSS are appearing before the committee tomorrow.

My next question is for the representatives of the National Platform of Self Advocates, Mr. McGrath and Mr. Lowndes. They talked about ensuring that those in charge, such as the Minister, the Decision Support Service and the Irish Human Rights and Equality Commission talk directly with people with disabilities-----

Mr. Dermot Lowndes

I find that when I am coming back from a meeting and I ask the staff if they know a law is coming in, those in the day service sometimes do not listen. The staff will say they do not have time because they have to bring somebody somewhere. We tell them the law is coming in and ask them whether they have information on it, and they tell us they do no know anything about it. If the organisation does not know anything about it, how are we to know? The CEOs should be brought in here and told they should know. There are loads of people working there. I go in and tell members of the platform but I do not tell the others. All staff should be trained. It is great to go to college and learn about disability, but when these people come in to train for the day service, they realise it is the real world. When you are in college, a professor might teach you about legislation or disability law, but in a real workshop situation, somebody could be in a bad humour and tell you to piss off. That person may not hold back. It is great to go to college in Blanchardstown, but when you come into our service, it is totally different. Somebody might be in a bad humour and he or she will let you know.

Mr. Joe McGrath

The UNCRPD makes sure we are included in law. If the Government does not implement that and engage with our organisation, it will find itself in a muddle of intrigue trying to put the legislation through the Dáil, if the legislation is not inclusive or acted upon with dignity for everyone that has a disability, intellectual or not. We all learn in different ways. If we all went to the same school and learned the same way, some of us would be geniuses by now.

Mr. McGrath rightly pointed to the UNCRPD. For too long, that legislation has been used as an excuse to delay the ratification of the optional protocol. We can all look forward to that not being an excuse any more.

I have one more question for Mr. Dunne. He raised many issues on which we need to look for answers. He discussed how appointed decision-making representatives receive an expense remuneration but there is no provision for remuneration for family carers acting as decision-making representatives. It seems to be another example of the State taking family carers for granted. I am aware that Deputy Dillon asked about it, but I ask Mr. Dunne to elaborate on the type of expenses that carers currently have when acting as decision-making representatives. We have had feedback in the cost of disability research report. We know the additional cost of having a disability in Ireland is a minimum of between €9,000 and €12,000 a year, but we do not hear much about what it costs for those who are carers for people with disabilities who are on the bare minimum disability allowance. I think it is important for the committee to understand the added cost.

Mr. John Dunne

We thought we had an understanding with the then Minister for Social Protection, that in commissioning the cost of disability survey, a survey on the cost of caring would be also undertaken. However, in practice, it just went ahead as a survey on the cost of disability. I am happy to report that we commissioned our own cost of caring survey and we will be launching it in the next month or so. It uses the same methodology and is undertaken by the same body, so it is very much like for like. To be fair, we are not trying to recover the costs of caring here. We are saying there are practical costs. At the moment, the carer's allowance is marginally more than the jobseeker's allowance. To qualify for the carer's allowance, one has to provide a minimum of 40 hours of full-time care a week. There are all sorts of restrictions around what one can and cannot do while getting the allowance. For example, one can sit at home and read novels or magazines to one's heart's content, but if one reads a textbook to do a course, that is counted as work and that person loses the carer's allowance. It is a pretty bizarre rule, if you think about it.

There is a situation where carers getting a negligible increase on what they get as jobseekers. They have to do at least 40 hours of caring a week, some of which is quite onerous. That is the backdrop. Now we have a situation where in addition to doing the work, they have to comply with regulations and rules, which means they have to be conversant with them. They have to submit periodic reports and account for what they are doing. There are many people in Ireland whose job is to tell people what they need and inform them that, unfortunately, the resources are not available to give it to them. If we had fewer people telling others what they need, and more people delivering the resources, we might have a better match up. The point we are simply making is that if a lawyer is going to be hired, nobody is going to argue with the principle that the lawyer is spending his or her time on the matter and deserves to the paid for that time. I believe the thinking is that remuneration will be fairly modest. I do not think anyone is going to get rich out of being a decision-making representative. They can also claim such expenses as they may have. I will be perfectly honest, I do not know what they might be, but again, I think they would be fairly minimal. The point we are making is really one of principle. If it is good enough for the lawyers, for example, then why on earth is it not good enough for the family members who are doing exactly the same thing? They are doing it on top of what they have to do already, so why would they not get paid?

The Deputy's question on the register is a good one. We totally support the idea of the advance healthcare directive register. I can think of a case recently where there was an advance healthcare directive registered. The hospital was aware of it and treatment was given in the ambulance on the way in to the hospital because the paramedics did not realise that was the case. To be fair, it was an honest mistake. The register is part of the problem.

What are doctors meant to do at 1 a.m.? Are they meant to take a person's word for it? Are they meant to go and check somewhere? Where will they check? The fact there is a register is not of itself sufficient. It is helpful but it is not enough. The point is definitely worth pursuing.

I thank the witnesses. It is lovely to hear from them. I apologise for missing parts of the contributions because I had to attend other meetings. For me there are more questions for the Department and not for the witnesses. They all have articulated so well the challenges, to say the least, with the legislation and the amount of work we as a committee must do to advocate for change on so many of these issues. As Deputy Cairns said, we have all been told the Bill is the pathway to the protocol. We have been pushing this and wanting it. Now I wonder whether we have reached a bottleneck. We are not particularly ready for everything. Mr. McGrath has mentioned that people do not know what this is about.

I have a few questions. I apologise for their generality because many specific questions have been brought up. I will look over the entire debate later and listen to it. Coming in and out we do not get the proper feel for it. I believe it was Dr. Harnett who mentioned the codes of practice in her contribution. The DSS has launched a public consultation. There is a tight timeframe for public consultation on the draft codes of practice and the regulations that have been published. Has the DSS put it out on Twitter? Has there been a press release? Has it sufficiently engaged with the people this directly affects so there will be proper input and buy-in to all of these code of practices?

The codes of practice are crucial to getting this right. I absolutely agree with having a review of them. We know any measure that has been implemented can always be improved a year down the road. Has there been enough done by the DSS? It has a very fancy website and it is very lovely. Is it accessible? Is it working for the people it is supposed to work for? How can we advocate for this? Is it working at a basic communication level between it and those it is supposed to be there for? It is not there for us to get references, press releases and the latest news. It is there for people who need the support.

Dr. Alison Harnett

I thank Senator McGreehan. I will share feedback on this question with my colleague, Teresa Mallon. I will briefly answer from my perspective. Ms Mallon, as the chair of our assisted decision making reference group, has been very involved in responding to the codes. We engaged with the Decision Support Service very recently. We are grateful for the response. It has engaged very actively with the issues we have been raising on the codes. We are glad about this. At a broader level, best practice is that people for whom this will be of very great importance need to be able to understand it. In other consultation processes we have seen the development of easy-to-read materials. Not everybody reads easy-to-read materials. Video explainers are great because they can be paused and rewound. They can be listened to. Not everyone wants a visual. Some people like to listen. It would be great if varying communication styles were possible for something of the importance of the codes of practice. We love to see accessible consultation. As Mr. McGrath mentioned, not everybody has access to the Internet. Not everybody listens the same way. Not everybody learns the same way. I will ask Ms Mallon for her input on this.

Ms Teresa Mallon

To echo everything Dr. Harnett has said, we believe accessibility of the process is very important. We have heard from a number of witnesses this afternoon about people coming to us with their lived experiences. They do not believe they or the people they represent have had strong engagement on the Act and the codes of practice. Accessibility is very important. We use many mediums in how we communicate with the people we support to ensure the information is accessible. It is very important that the people we support are part of the process. They have not been to date. The people supporting them, such as family members, are key to the successful implementation of the Act. They must also be involved.

There are lessons in this. There is a sense of urgency now to get this over the line. In fairness, the Act has real ability to strengthen the rights of people with disabilities through supporting them with making decisions. It is powerful legislation. It may have its flaws but it is powerful in its focus on will and preference and moving away from a best interest approach. It is decision specific and time specific. There are many powerful components to the legislation. As one of the speakers said earlier, there should be nothing about us without us. The main lesson is that all of the key stakeholders should have involvement in these processes and feed into it so it is accessible. Although we found it very challenging because the codes were circulated so close to Christmas, we still had an opportunity to engage and give some feedback on the process. I want to reiterate this.

Ms Ber Grogan

Section 103 of the Bill deals with the codes of practice. There were two phases. Phase 1 opened at the end of November and closed on 7 January. There were six codes of practice in that session. This is the one Ms Coyle referred to. It was this first one that had some examples of scenarios none of which referenced mental health difficulties. The deadline for phase 2 is this Friday. There are eight codes of practice in this on decision making assistants, co-decision makers and independent advocates. These are the people we are speaking about today, including family members, friends, carers and supporters, who might be in a position of decision making support.

We have all mentioned the UN Convention on the Rights of Persons with Disabilities. Articles 3 and 4 require the State to consult with people in the process of making policy. This is not just to give them accessible information afterwards but to involve them throughout the process. I know there are huge time constraints with everything and we had the Christmas period. There is a total of 14 codes and they are very dense.

This innocent person here was hoping the Bill would be an answer to empowerment but people could be disempowered by a lack of awareness because they do not know what is going on. They could fall through some cracks.

That brings me on to a question to Mr. Dunne and whoever wanted to answer. The State might not be ready with all the decision-making representatives, procedures and processes in place. Family carers might and individuals might not know what their rights or obligations are. What are the possible impacts of that on the individual and on healthcare? There is a chance that someone might go into hospital, a bank or somewhere and fall through a crack of bureaucracy and nobody might really understand what each person’s role in a decision-making process is. However, we know the person who is to make the decision is a facilitator of a decision, not a decision maker. What are the unintended consequences of not being prepared for this Bill? How will people possibly be disenfranchised and disempowered by organisations, healthcare workers, bank workers or whatever not knowing where their rights and obligations lie? How will that impact on the individual who needs to make the decision?

There is a lot in that.

Mr. John Dunne

There is quite a lot in that. We are not talking about unintended consequences; we are walking into this with our eyes wide open. Nobody need tell me in six months’ time that we did not plan this or intend it to happen. What can happen? A light switch is flicked the day this legislation is commenced and from that day forward, in a family situation where previously profoundly disabled people were being looked after by their families and the families were looking after them the law will say that a person is his or her own person, decisions may not be made for them and their business may not be discussed with third parties. We have been saying for a while that we should take one obvious area like medical situations. What will happen in a medical situation? The answer we get is that we are not to worry about that because the good news is there is different legislation which says if a doctor feels a need to do something he or she can do it and he or she does not have to worry about capacity. We are basically saying we will take the family out of it, the doctor will act and will not be able to talk about the decisions he or she is making due to GDPR issues. Is that an improvement? It is not from a family carers' point of view. To add insult to injury, when the doctor is finished that person is going back to the home to be looked after by the same family. The family has been learning how to do things for loved ones over 18 years and all of a sudden they find they are through the looking glass in a legal sense and they do not know what they can and cannot do. They also do not know what falls within reasonable discretion. If they give somebody cornflakes in the morning instead of Rice Krispies is that abuse or is that reasonable? They will not have any control over a situation like that. People will make a complaint and the DSS will adjudicate. That is a nightmare situation for families.

We are talking about the question of will and preference rather than best interest but on the medical front it is the opposite. Will and preference go out the door in favour of best interest because there is a lacuna until a decision-making representative is appointed and even then there are limits on what the decision-making representative can decide. The doctor swoops in with his or her overriding ability to diagnose a medical requirement and intervene with no restriction of any description. That is the kind of jumble we are looking at. From a family point of view it is threatening and uncertain.

The following is more of a colourful anecdote than anything else but an adult might get a disability allowance for example. I am aware of situations where people get their disability allowance, go down to McDonalds, eat the entire allowance in one sitting and come home. These people are more than sick and it comes out of both ends. Who is left to clean up all of that? The family. The money from the disability allowance has been spent at this stage and the family has to pay for the food, heat, cleaning and whatever else. That is not ideal. The committee will be happy to hear that an advocacy group got involved in one of these cases and said this was not a good way to spend the money. They said that by all means some of the money could go towards McDonalds but it is not a good idea to eat €200 worth of burgers at a time. They took some of the money and spent it on training and helpful activities etc. That was an improvement but nobody stepped back and said that a family up the road was feeding this guy, clothing him and whatever else without him making any contribution to it. Where does will and preference come into that? Is there something about the social contract around the family? If we are treating somebody as an equal person surely he or she has responsibilities as well as entitlements and rights. I do not want to sound too unreasonable about it but where that equation goes badly wrong is in the family because the family will never hold their loved one to account for his or her responsibilities. The system only talking about will and preference ignores the fact that if one is in a social situation and is being treated as and acting like an adult, that is a two-way street. This will collapse under its own internal contradictions, largely because we are not preparing for it properly. However I am not saying it is impossible to do it.

We can go back to the question of not having guards on beds and it is true. I have seen the situation where someone is quite distressed in hospital and trying to climb over the side of the bed because he or she wants to get out. Whether he or she needs to or not and whether it is a good idea or not is another matter but he or she is distressed about it, which is fair enough. It may be a good idea not to have a barrier. In an institutional setting, a certain economy of scale can be achieved to manage that. If we want to do that in a home then it can be done but it requires a staff of four full-time carers to roster 24-hour cover. Is the expectation that the decision-making representative is there 24 hours a day? Is the expectation that there is nothing wrong with that and that he or she can keep an eye on someone 24 hours per day? I do not know if that is a good answer to the Senator’s question but it is a good question and I do not know where to begin or finish answering it. Those are some examples anyway.

Mr. McGrath wants to come in on this too.

Mr. Joe McGrath

The Senator referred to something I said in my speech. The law causes trouble for people with disabilities who do not have good supports in their lives. If people do not have good support in their lives they will not trust the people who will be appointed by the judge or by whoever else because they have been let down in the past. They could be sent to court then and most basic decisions will be made for them because they do not have good supports. People who live in institutions their whole lives and who do not have their families around them are most at risk.

I am also worried about families, especially older family members, who are used to the old way of making decisions on behalf of disabled persons in their lives. We know they care about the people and love them but what family members want and what disabled people want are not always the same thing. Our right to make our own decisions must be protected. I am also worried that family carers are asking to make restraint legal but we want the law to say people with disabilities should not be restrained.

We have seen people abused in institutions and at home because restraints are an everyday occurrence. Safeguards can be in place without restraints. No one should be allowed to use restraints in this way. We are going back to the old days when people were put into straitjackets for basic things and judges made bad decisions in the older days when the Lunacy Act was in force.

I thank Mr. McGrath. Does Mr. Kearns wish to respond?

Mr. Peter Kearns

It is good to see Senator McGreehan. The danger is that we fall back into a medical model in responding to people who are disabled. That would be prohibitive, including for family members. I know the intention is to do good but sometimes that goes against the will and preference of disabled people.

The issue with will and preference is that it is not something that can be gifted. I spent 20 years in a residential home and today I finally have a nice council house in County Sligo. Sligo County Council has done some great work. I have a personal assistance, PA, service for three or four hours per day. I have the confidence and capacity to use that. That is a chance to be sociable; it is important to recognise that. It is not just about giving people will and preference and saying, "There you go." It is about capacity-building. I have a really good relationship with the community development sector such as the community centres in Sligo. That is where capacity-building happens. We can take people away from family members and disability centres. It is a long process but it does actually work.

I know I keep beating the same drum but DPOs have experience of doing that. It is not a blank canvas. We have experience of working with disabled people. I manage a gym where I have worked with more than 600 disabled adults in the last two years. We have shown that through very simple training programmes and IT programmes with the local DPOs, disabled people can appreciate the capacity-building relationship with will and preference. It is not something that happens overnight but it is doable.

I will follow up very briefly with Mr. Kearns to ask a question on that. It is lovely to see him again. If we do not facilitate and work on this will and preference attitude, as opposed to best interest, are we in danger of legislating for a medical model as opposed to the social model? If we are not putting front and centre the message that it is will and preference, not best interest, that is required, are we in danger of keeping a medical model, which is something we are trying to get away from?

Mr. Peter Kearns

The medical model is so inherent and big that it is easy to fall back into impairment label narratives and identifying disabled people with their impairment label baggage. That could be a danger as well. The Senator mentioned will and preference. We start out by recognising class, gender and ethnic backgrounds. Those elements are very important to take into account. If a person is a working-class woman who has spent 20 years in an institution, where does that person get the confidence to really appreciate that will and preference?

In terms of the National Advocacy Service for People with Disabilities and its board, one comes across institutions and family members talking about non-verbal communication. It is not non-verbal; it is just a different type of communication. In my experience with the national advocacy service and the staff I have not come across any cases, having worked with disabled people for 30 years, where one cannot find that point of communication and a bit of that will and preference. It takes a bit of time but not a lot of time. Members might be surprised how quick that happens. Will and preference also has a capacity-building nature and framework behind it. It is not just saying, "Here you go, you have your will and preference, go for it." There is a need to recognise that disabled adults have to have capacity-building for that will and preference request.

I thank Mr. Kearns very much. We move to Senator Seery Kearney.

I have held out great hope for this legislation. I am with Senator McGreehan all the way in that I have viewed it as being quite empowering legislation. I can see how, in an institutional setting, it very much is empowering when it is worked with a lot of staff. Perhaps it is designed with that in mind.

I am very disappointed to hear the consultation implications. I find it horrifying. As someone who has given out about the lack of consultation on transport and changes to BusConnects for local communities in the middle of the pandemic, I think, my God, this comes down to individuals' autonomous choices in the way they live their lives on every single decision they make. I find spending six weeks over Christmas on a code of practice annoying, to say the least. I commit to pushing back on that. A review is laudable and I can see why it would make sense given that we do not want to delay this legislation because the optional protocol is dependent and the two are so coincident in the planning. At the same time, however, it would appear that we need to have that conversation. Perhaps my Government colleagues and I will band together and do a piece of work on that.

Last September, when Mr. McGrath appeared before the Joint Committee on Disability Matters, he stated "we are only allowed to participate in story-telling and not in decision-making." He then went on to describe how accessible information is. That session was discussing voting and participation in public life. That sentence about story-telling versus decision-making has very much stuck with me. This legislation was supposed to be about providing rights and supports to ensure that decision-making.

I am aware that Mr. Dunne wanted to come back in so I want to give him the floor to do that. Let us just come to Mr. McGrath first and hear what he says to that or whether there is anything on which he would like to elaborate or feel has been unsaid as yet, given that I am the final questioner. Is there anything he would like the committee specifically to address? How would he like us to address the lack of consultation? That question goes to Mr. Lowndes also.

Mr. Joe McGrath

I would like to see the Dáil include us from the very beginning. If the legislators do not do that and they consult other groups, the people with intellectual disabilities will be left outside. Those of us who are good enough to speak up will find a way to understand the law but those of us who need extra supports will be left behind. The Government will be dealing with three or four different groups and it will not know which one fits in where.

Mr. Dermot Lowndes

My opinion is that people with a disability should be on every board.

I was on the board of St. Michael's House. There was a new CEO. Many parents left because they did not like the new ideas that the boss woman was giving out, but she left. It then kind of went back to the old way. That makes you think there is no interest and you wonder what is the plan. If no plan is being made, it makes you think "Oh well". I have a platform but there are other people in there who cannot speak up. You might as well be talking to the door. Who is going to look after people with a disability living on their own whose parents die? Who is going to look after their funds? Will there be provision in the Bill for such people to be looked after? What will happen to people who do not have any siblings, are non-verbal and live on their own? Will they have to go into care?

I can see the strengths in the legislation in the context of situations such as that.

Mr. Dermot Lowndes

Yes, but there are weaknesses in it as well. If I go in and say to the lads in my day service that this legislation is coming in and is easily read, they will ask "What is that?" and say they have no interest. They would prefer to go out for a cup of coffee or to go bowling. I will say, "Okay, but it is coming in." If I then go to the staff, they will say they do not know about it and were not told anything. If I ask whether they know it is coming in from the Government, they will say they do not know about it. They need training as well.

Very much so. I hear that loud and clear. Mr. Lowndes made a very good point regarding people being in bad humour. There are implications for daily life and it needs to have a clear structure of empowerment and safety. I very much hear that.

Before I ask Mr. Dunne a specific question, is there anything he wishes to contribute?

Mr. John Dunne

I want to thank Mr. McGrath and Mr. Kearns and clarify my comments. Mr. McGrath made the point that people in institutional settings who do not have family support are probably more vulnerable in general terms. That is absolutely true. He also made the point that sometimes families are not the best friend of a vulnerable person because, let us say, they foster dependency or do not promote independence. I wish to say on the record that is true. It is one of the things the legislation would help put shape and structure on. It is a minority situation but it certainly can happen.

I know many people who have made the journey and make the point that the fact a person with disabilities is, at a certain point in adulthood, capable of independent or, at least, supported living is usually the product of a lifetime of fighting on behalf of that person by his or her family. At a certain point, the families may just lack the confidence, courage or whatever to be able to let go. To be fair, the system engages quite well and effectively in that regard over time, but I wish to acknowledge it is a legitimate point and concern and it is something with which the legislation will help.

I stated at the outset that I know restraints are an emotive topic. Of course, they are emotive. Nobody likes to be restrained. I did not address this under the heading of restraints. I addressed the reference in the legislation to situations where there is an imminent risk of serious harm. Nobody likes to be restrained but irrespective of whether a person has any sort of disability, if he or she is at imminent risk of serious harm, he or she probably deserves to be restrained, if I can put it like that. The point about the legislation that is being deleted is that it contained several pages on safeguards, limitations on time, reasonableness and whatever else. That is being taken out. Now I might be told by the DSS in a phone call tomorrow that the intent is the law will be silent on it. Actually, however, the law will not be silent on it because the lawmakers will have put it into legislation and taken it out again. A judge cannot ignore that in terms of what is the intent. The intent is either to remove restrictions on restraint in the home, which, frankly, would be incredible and we would not support it, or else to say there can be no restraint in the home. In some situations, there is a need for moderate restraint. I do not think anyone is going to count locking the front door or having a stair guard as serious restraint - we are certainly not talking about tying people down or tying them to radiators - but they can be necessary measures to safeguard a person.

The final point relates to will and preference. It is a tricky one. I have no issue in terms of the 2015 Act and the spirit of it in respect of moving to will and preference but there is a difference. If I decide to buy a low-slung Italian sports car in spite of my bad back and arthritis and all the rest, I live with the consequences. It is a bad investment. Who lives with the consequences if a person exercising his or her will and preference makes a bad decision but does not have the capacity to handle the consequences? The person's family does. All we are looking for in that situation is a space that acknowledges that and says we want to empower people but that there will be situations where it goes wrong and where help will be provided in those situations instead of saying, "We are here doing the good stuff and empowering people but if it goes wrong, you lot over there get up from the corner and sort it out."

Should there be some sort of an appeal or review mechanism? How would Mr. Dunne manage that situation? How does he think it should be managed in a way that is in the spirit of where the legislation wants to get to? It is a valid point.

Mr. John Dunne

I am enough of an optimist to think that in ten years' time it may not be a problem because the families concerned will be registered as decision-making representatives. They will be doing returns. The system will be experienced in how to deal with this. At the moment, the codes of practice are almost academic exercises. Frankly, I find them hard to read because at one level, they are not detailed enough to be technically useful, while at another level people are saying they are too cumbersome and complicated. I would not like to be the person trying to draw them up. In ten years' time, however, we will have a decade of lived experience of it, so all of that will probably be less intimidating than it is currently.

We are just looking at the hypothetical situation that this legislation is all about vindicating the rights of people to live to the maximum of their ability and, indeed, to recognise and maximise their opportunity to exercise their will and preference. Nobody is contesting that. The question is where that leaves the families. For five years, there has been overwhelming silence in terms of the engagement around that. When we have raised questions, we have not got answers. Sometimes we have received quite preposterous responses along the lines of, "Do not worry about it; it will be all right", which is not much in the way of consolation. We have asked specific questions on the ten-year timeframe and the issue of restraint. That is not a trivial change to the original legislation. I have no issue with it being put on the table as a change or losing an argument about whether it should be in the legislation. I have a profound issue with the fact that people were talking about it for some part of the past five years but never saw fit to ask whether it would have any effect on families.

I see Ms Mallon and Ms Grogan wish to contribute. I will bring them in shortly.

I acknowledge that at this committee and, in particular, at the Committee on Disability Matters, we are often joined by extraordinary advocates on behalf of family members. I often wonder about the people who do not have family members who are so extraordinary and have fought for so long.

My question relates to the submission from Disabled Women Ireland regarding privacy. Although we may discuss the unfettered empowerment within this, at the same time there appears to be an ability on the part of the DSS under the legislation to set aside privacy rights. Do any of our guests wish to comment or elaborate on that? The privacy rights of persons or the ability to share their personal data is contained within the legislation in an unfettered manner and that lack of consent on the part of the person appears to be set aside at quite a low threshold.

Does Mr. Dunne wish to come in on that specific question?

Mr. John Dunne

I am not an expert on the technical aspects of it but it does fit what we see as the model. We are replacing one, dare I say, paternalistic system with another. For all the rhetoric behind this, there is a final backstop which-----

Mr. John Dunne

-----reserves the right to step in to say we know better.

Yes. I agree with that.

Mr. John Dunne

It is through the amending Bill, but it is more generally behind it and goes back quite a long way. Take the wards of court. Much of the impetus for this seems to have been focused, initially at least, on changing and fixing the wards of court. It is a flawed system rooted in archaic law but, to be fair, it has improved beyond all recognition in the past decade. I will give the Senator an example of what I still find rather extraordinary. Part of the idea of wards of court is that when people who do not have the capacity to manage their own affairs and are given a major award of money, the court establishes the wardship to manage the money and safeguard the person. There were a number of wards of court whose money disappeared in 2010.

I saw that in a recent television programme.

Mr. John Dunne

This has been going on for a long time. Nobody was held accountable for that. A whole system was set up to protect these people and their interests yet when the system did not do its job right, everybody walked away quietly and whistled. There are families still struggling to come to terms with that. I will be honest. I do not see a way in which to avoid having something in the background which will, ultimately, step in and anchor things. This legislation is anchored on very strange, shifting sand. It is not very visible but it is there. What the Senator talked about is just one manifestation of it. I can think of several others in the legislation.

I want to bring in Ms Mallon and Ms Grogan. They have been indicating for quite a while, perhaps on other points.

Ms Teresa Mallon

It was on one of the previous points. Is it okay to address that?

Ms Teresa Mallon

It relates to questions raised by Senator McGreehan. On behalf of the members we represent, we believe that the assisted decision-making legislation has the ability to be transformative, based on will and preference for the people we represent, once the appropriate resources, supports and education are put in place. It has the ability to realise a culture shift. It will change policy and practice on the ground and it is about building capacity of the individual. It is looking at the least restrictive approaches in relation to everything we do.

On human rights-based policy and practice, which this legislation is mainly aligned to, it is about the rights of the person and equal rights. We all have the same rights under the legislation and equal recognition in the eyes of the law. Anybody who we support and whose voice we represent deserves the same experience and treatment in life as any one of us. We welcome the presumption of capacity at all levels.

My colleague, Dr. Harnett, mentioned the impact assessment piece earlier. That is absolutely essential to be able to fully implementing the assisted decision-making legislation and ensuring the human-rights based approach that will preface the building of capacity and ensure people have good choices in life and can be active citizens within their communities.

We need to have proper supports in place for people, be they people currently living in residential services associated with disability services or people living with family members at home, and for their families and the circle of people who support them. If the impact assessment is not done properly, or it is not fully costed and the proper training in is not in place for the stakeholders, wider society and individuals, staff and families, it will not work out. We must ensure that everything that is needed happens.

We are also conscious that, over the years, many individuals with intellectual disability who chose to live more independently found that residential support placement arrangements were not available to them because the resources have not been made available. No planned resources or funding have been allocated to residential placements for many years. The capacity review that was launched a number of years ago indicated significant investment is required to make that happen.

As Mr. Dunne mentioned, many family members and carers are caring for people, some of whom have very high support needs. In terms of supports and residential placements being available, that is just not a reality. When we talk about will and preference and the full enactment of the assisted decision-making legislation, the resources need to be in place to make that happen in order that people can have their will and preference and the choices they deserve available to them, be that employment, a place to live or anything else.

I will finish on a point linked to data. We are very mindful that up to 2,000 people are still living in institutions. A national policy, A Time to Move on from Congregated Settings, was launched in 2012. At that time, approximately 4,000 people were living in institutions or, to use the more recent title, congregated settings. We still have not realised and met that target in terms of supporting people to have lives in the community, which is in line with Article 19.

The timeframe was seven years for everybody to have decongregated into the community. That has not happened and the timeframe has since been extended to 2028. That is a huge issue for individuals living in placements that are not suitable and in which people who are incompatible live together. In its 2019 annual report, HIQA stated that congregated settings significantly impacted on the quality of people's lives. There was a sense - and findings - that people were more likely to be subject to safeguarding issues and peer-to-peer assaults and were removed from their natural community and networks.

We have to be realistic about this and the State has to acknowledge that if we want to fully enact the assisted decision-making legislation, which is all about will and preference, building capacity, choices and alignment with the UNCRPD, we need to invest the funding required to make that happen at all levels in society. We need to invest in supporting families and individuals and provide the investment needed in disability services, as outlined in the capacity review and the review being done of congregated settings. The Moving In, Moving On report launched in December identified the significant increase in funding required per placement for people to move and transition into the community. All of that needs to happen to make this a reality. It could become a very good for people if the proper supports are put in place.

Ms Ber Grogan

I will be quick. I echo what Ms Mallon has said. This is very important legislation. We have been waiting so long for it and it will bring about significant and positive change. We just need to make sure that people with mental health difficulties are not excluded from it. As outlined in our submission and as Ms Coyle stated, we need the provisions to be extended to people who are involuntarily detained under Part 4 of the Mental Health Act 2001. We urge the committee to do so.

That links in with Disabled Women Ireland and its point around privacy. It is a brilliant group of women. If the interpretation of the Act will be about the person and his or her will and preference, choices and consent, that person should be the one asked whether this information should be shared. The person will have that control.

It is going to be about that culture shift, the training, the sea change, and education and awareness about the person's right to make decisions. The reason I put my hand up earlier was because - we do this quite often in mental health reform in our online meetings and probably and before online times - some people listening today might have found some of the topics of discussion difficult, upsetting or triggering. For anyone listening who may have been through mental health difficulties, has been involuntarily detained or has been through any of the other issues we are talking about with institutions, we are talking about these issues very frankly but we all really care, and there are supports available online. That is something I want to flag because I know people can get upset.

Mr. Peter Kearns

I will be quick. It is again a technical point. It just shows the strength of the disabled persons organisations and the technical support they provide for the Assisted Decision-Making (Capacity) Act. Within the framework of the DSS, there should be a direct reference to that technical support by the DPOs. There are also other issues, such as the whole spectrum of LGBTQ groups. There are a number of genuine DPOs based around the UNCRPD that can provide great technical support to the DSS. They are doing this with quite low resources as well. There is €2.2 billion gone into the disability sector. It is great to hear another DPO mentioned in this discussion.

Mr. Joe McGrath

Talking about privacy, sometimes there are files that social workers and other staff members have written about persons with disabilities, which say things that are not true. We disagree with this. We do not want other people to be able to read this information. If you would not share information about a person who is not disabled, you should not share information about a disabled person. Why discriminate between able-bodied and disabled people? We are still the same people but if disabled persons do not consent to have their information shared, it should not be shared unless a judge orders that it be shared. Our privacy is very important to us. If, at some stage something happened to one of the members and he or she was in the same position as most of us who spoke today, that member would not want his or her private information shared with people he or she did not even trust.

I thank the speakers and Senator Seery Kearney. I thank everyone sincerely, including Dr. Harnett, Ms Mallon, Ms Coyle and Ms Grogan, Mr. McGrath, Mr. Kearns and Mr. Lowndes. I thank them all for being here today. This was our first meeting on the pre-legislative scrutiny of this Bill. We thank them for their contributions and for answering all the questions, in particular those who shared their own lived experiences. It is very valuable and helpful to us as a committee. We have a number of meetings coming up and I am sure our guests will all be tuned in or watching back, including with the Department. We may try to raise some of the issues they raised with the Department. I thank the witnesses and members. Is it agreed to publish the opening statements? Agreed.

The joint committee adjourned at 6.05 p.m. until 5.30 p.m. on Wednesday, 16 February 2022.