Pauline Tully (Cavan-Monaghan, Sinn Fein) | Oireachtas source

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

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

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

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

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

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

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

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

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

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

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

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

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

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