Ms Joanne Condon:

I thank the Chair and members of the committee for inviting us today. I will read a slightly abridged version of our submitted opening statement in the interests of time. I am the national manager for the National Advocacy Service for People with Disabilities, NAS. I am joined today by Suzy Byrne, regional manager with NAS. Our service provides professional representative, independent advocacy to adults with disabilities throughout Ireland, supporting people with disabilities in asserting their rights, making their voices heard, and safeguarding their autonomy. The theme of today's meeting, autonomy and integrity, is at the heart of our work. These are fundamental human rights enshrined in the UNCRPD and reaffirmed in Irish law through the Assisted Decision-Making (Capacity) Act 2015, ADMA.

Every day, we witness the challenges people face when systems and laws are slow to respect their rights to self-determination. The Act, in force since April 2023, aims to reorientate decision-making from one of doing for to supporting with. Prior to the commencement of the Act, NAS advocates were well accustomed to supporting people to have their will and preferences heard where applications were made for wardship and to inform the High Court regarding people's concerns about decisions being taken by their committees. NAS advocates have also successfully supported several individuals over the years seeking to be discharged from wardship.

Since commencement of the Act, NAS has supported people to have information about their rights and the new Act; to be viewed as decision makers; to have their views heard by those who might believe that decision-making representative arrangements are required; and to communicate with their legal representative and to make their views directly known to the court. NAS advocates work with the person independent of others and free from all conflicts of interest. The advocacy process is person-led and directed. Our advocacy work includes supporting people to make decision-making assistance agreements, co-decision-making agreements, to seek a decision-making representative, to make advance healthcare directives, as well as enduring powers of attorney arrangements. We also support people to be recognised as decision-makers foremost and build people's capacity to make their own decisions in all areas of their lives.

Since commencement of the Act, systemic barriers have also existed within this new system that can act to limit people's autonomy, like non-adherence to the guiding principles of the Act, decisions being made for people rather than with them, assumptions being made about people's capacity or lack thereof, and a sometimes outcome-driven approach to decision-making representative applications aimed at fixing problems that are not always necessary, proportionate or person centred.

Since commencement of the Act, NAS has worked a combined total of 3097 advocacy cases. Of these cases, 24% have related to advocacy support with decision-making. Members have been provided with a breakdown of these figures.

We urge that the implementation of the Act be more closely monitored and reviewed to ensure full adherence to the guiding principles of the Act in every respect. The Act's guiding principles must be seen as operational imperatives. It has been our experience that departure from the Act's guiding principles presents a fundamental threat, undermining the spirit and human rights-based nature intended by it. Where fidelity to the Act's guiding principles has been undermined, problems arise, including decisions being made for rather than with individuals, capacity assessments being misused to inhibit individuals rather than support their decision-making and an undermining of proportionality resulting in an over-reliance and rush to the highest tier of decision-making.

Wardship has long denied people with disabilities the ability to make decisions about their own lives. We welcome the ongoing work and commitment to abolish wardship, but we urge that this process be expedited and adequately resourced so that no one remains longer than is necessary in a system that is profoundly incompatible with human rights.

I will turn to some of our notable observations based on our work in wardship discharges. We have observed that those assessing the capacity of people seeking discharge from wardship are at times provided with limited information on the person in advance of meeting the person and often only have one meeting with the person. They may not have access to vital information on the person's preferred communication style, activities of daily living, support plans in place or indications of the decisions that the person routinely makes.

The current system has a two-tier system for capacity assessments. Those assessing capacity in ward of court discharge cases include court-appointed medical visitors, which are currently only registered medical practitioners, mainly psychiatrists or general practitioners. However, for other applications under ADMA, Parts 4, 5 and 7, functional capacity assessments may be conducted by a wider prescribed class of assessors. With the expected rise in wardship discharges before April 2026, the current approach may place additional strain on an already limited number of professionals, increasing the risk of delays. This variation in assessment approach and templates should, in our view, be standardised with immediate effect. The inclusion of multidisciplinary roles is key to a move away from a purely medicalised approach to UNCRPD compliance in keeping with a social model of disability.

Disability service providers, where involved, as well as advocates, often have a legitimate interest in the person's rights as well as a lot of information that can assist in the discharge process, but they are not officially notifiable parties under the Act, which could be further considered. Where it is determined that decision-making support at any level is required, information and support to clarify the distinct difference between the role of a wardship committee versus the role of a decision supporter is essential, particularly where former committees may take on formal decision support roles.