Marie Sherlock (Dublin Central, Labour)
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I am calling for an urgent and speedy review of the Assisted Decision-Making (Capacity) Act 2015. Many of us recognise and applaud the intent and ambition of the Act in supposedly giving greater power and autonomy to vulnerable individuals and to significantly increasing the numbers registering enduring power of attorney, EPA. The reality has proved very different, however. I want to relay to the Minister of State the enormous frustration among many people with the operation of the Assisted Decision-Making (Capacity) Act. This is not about one single piece of the Act but about the operation of both the enduring power of attorney and the operation and bureaucracy around that, the decision-making representative and the process of registration. The frustrations relate to access to the system of registering for an EPA, the cost, the length of the procedure and who recognises it. It is supposed to be a legal document and yet I have accounts of banks, insurance companies and other financial institutions that are refusing to recognise an enduring power of attorney. The anger relates to the decision-making representative piece as well where parents are forced to go to court just to represent the needs and well-being of their adult children or siblings. They have very serious concerns about how onerous the bureaucracy is around all that and the costs, but also in terms of the balance of rights and responsibilities. I believe there are four key concerns.

A number of families told me they have spent thousands of euro trying to complete the process of registering for enduring power of attorney. One family spent €4,800. That is the very opposite of what the Act set out to achieve. It is downright exclusionary of the very people we are seeking to try to help here. We have confusion about the role of the solicitor. Obviously, we have the 2024 practice instruction from the Law Society of Ireland with regard to engaging only with applicants from start to finish as opposed to just for the legal practitioner statement. The Decision Support Service, DSS, told one constituent of mine there are only three solicitors in the country who are willing to do that single piece of the legal practitioner statement. That is contradicted by the replies to parliamentary questions I have received. We need clarity between what the DSS is saying and what the Department of Justice is saying.

Then, we have difficulties with recognising an enduring power of attorney. In one case, a woman had to battle with a fair deal office, then AIB and then Aviva just to have the enduring power of attorney recognised in terms of dealing with her dad's affairs. The Decision Support Service was of zero help in this regard. The process as she described it was absolutely tortuous. Is it any wonder we have seen a reduction in numbers in the EPA process over the past two years?

The other critical point is with regard to the wardship system. By 26 April next year, all wards of court are supposed to exit the system and yet we have seen a very small number of those voluntarily exiting the system. What is going to be done in that regard?

I want to cover the significant issues with regard to the decision-making representative, DMR. I know of one gentleman who went through the courts process, which legal aid did not fully cover, by the way, because he had to pay for the capacity assessment for his sister. He went through all that and then he came to us when he had to submit the initial report, and then what will come up next year is the annual report. It is 34 pages long, it is not downloadable, and it is tortuous in terms of filling out.

I have had parents come to me with very serious concerns about the care of their adult children now within certain institutions in this country because of the Assisted Decision-Making (Capacity) Act in terms of the level of autonomy in decision-making that is being given to their child, which may actually go against their health and well-being.

Colm Brophy (Dublin South West, Fine Gael)
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I thank Deputy Sherlock for raising this important issue and for offering me the opportunity to respond.

The Assisted Decision-Making (Capacity) Act 2015 was commenced in 2023, and it represents a landmark legal reform in this country. The Act replaced the 1871 Victorian-era wards of court system with a rights-based model for tiered decision support arrangements. It is a key component of our compliance with the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, and has positioned Ireland as a leader on capacity law internationally. The 2015 Act was developed in close consultation with a wide range of stakeholders and was welcomed by disability groups, advocacy groups and safeguarding groups alike. A review of the Act not later than five years after its commencement is required under the legislation itself, and the programme for Government also commits to a review.

In assessing the operation of the Act, it is important to bear in mind that the Act represents ambitious and systemic reform of a system that predates the Irish State. We need to distinguish teething pains and the adjustment of sectors and professions to significant change from the areas where the Act itself must be improved. Legislative review can only be approached with the insights of a sufficient period of operation. Where improvements to the Act may be necessary, they will be made. In that regard, the operation of the Act is continuously monitored to ensure its effective operation. Issues arising are examined and addressed, as appropriate, and co-ordinated by an interdepartmental steering group chaired by the Department.

The Minister has been paying close attention to the operation of the Act and is pleased to see that the available data shows significant and increasing numbers of people engaging positively with the new system. To date, the Decision Support Service has registered almost 4,000 decision support arrangements, including more than 2,300 enduring powers of attorney, indicating a robust uptake. Ensuring the accessibility and efficiency for decision supports is vital. While some aspects of the Act relate to court processes, within the Minister’s direct remit is the availability and quality of DSS services. Both the Department and the DSS have engaged with a wide range of stakeholders to understand the experiences of the Act and to identify and address any difficulties that may be arising.

In the main, experiences have been extremely positive, but action has been taken to address barriers to accessing services and supports. This has included engagement with the legal profession in respect of their role in the EPA application process and the establishment of a dedicated EPA helpdesk to ensure individuals who require additional assistance in completing an online EPA application are supported in doing so. Individuals who are unable to utilise the online portal, for a variety of reasons, are facilitated in making an EPA application manually. Officials in the Department will continue to monitor and review the operational issues as they arise. In all aspects, the Minister’s primary concern is that the Act delivers appropriate, safe and rights-based supports.

Marie Sherlock (Dublin Central, Labour)
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I thank the Minister of State for that. It is important to understand and listen to the experience of those who have the working knowledge of how this Act has operated. Five years is simply too long a period for a review of this legislation to take place. I want to relay to the Minister of State some of the views of the Huntington's Disease Association of Ireland, which talks about how the Assisted Decision-Making (Capacity) Act upholds a person's right to refuse services, but that robust checks are required to ensure a person's disability does not lead to a violation of their human right to health and social care, welfare entitlements, family relationships, social engagement, protection from exploitation, nutrition, housing, etc.

At the heart of the UNCRPD, which has been ratified by Ireland, is that we obviously want to promote and move away from the paternalistic attitudes towards those with intellectual and physical disabilities in this country to ensure they have their human rights and fundamental freedoms. However, we also have to consider when those disabilities may actually impact on their decision-making. I believe the legislation as currently drafted is too blunt in that regard and that there is confusion within the providers of care in this country. I will give the Minister of State one example.

I met a couple in February who talked to me about their daughter. She is in her 40s, and she has a particular condition where she has to be careful about the sugar she takes because of the various impacts. In the care home previously, if that woman wanted to have three slices of chocolate cake, she would be warded off that and told it is going to have a negative and adverse impact. Now, however, that family is telling me they are powerless to intervene. If this adult wants that, she is going to get it. The reality is we have to have a much better balance between looking after the welfare and well-being of these individuals, while absolutely recognising their right to make decisions where it is possible.

Colm Brophy (Dublin South West, Fine Gael)
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I reiterate that the Minister’s aim is to ensure the most effective operation of the assisted decision-making (capacity) legislation and to ensure that its principles are upheld and that its objectives of promoting and enshrining the rights of those with capacity difficulties to retain as much autonomy as possible are realised. We must always make sure that our laws are working for the people they are intended to serve. For this reason, the Act itself has a built-in review of its operation after a five-year period following commencement, recognising that with any significant change some issues will need to be addressed with the benefit of a period of operation and hindsight. Critical to the forthcoming review will be the experiences of stakeholders and, in particular, of service users. The role of the interdepartmental steering group that I mentioned earlier, which has been monitoring implementation since the commencement of the Act, will also be critical. The Minister will continue to work with all stakeholders to ensure that the required review of the Assisted Decision-Making (Capacity) Act captures the lived experience of people with capacity difficulties and ultimately ensures that people in Ireland are supported in retaining their autonomy and dignity in circumstances where they lose the capacity to make certain decisions and require appropriate, accessible, safe, and rights-based support.