Holly Cairns (Cork South West, Social Democrats) | Oireachtas source

I am deeply worried about this Bill. When I was driving up from west Cork this week I was trying to think about how I could convey my profound concern for what the Government is doing. This Bill will have far-reaching consequences for disabled people, older people and individuals experiencing mental health difficulties. It affects how they can make decisions about their lives. This Bill should have been developed in partnership with disabled people. Instead it is being rammed through, ignoring their calls for a transparent and collaborative approach. Not only is this morally wrong but it is also in obvious breach of the UN Convention on the Rights of People with Disabilities.

This Bill should be about structures that presume individuals have capacity and empowers them. Instead, disabled people and human rights experts are warning that it is establishing a system that enables discrimination, exclusion and abuse. Crucially, the Government is allowing a process where a large number of unqualified people can make assessments of an individual's capacity. For example, a bank teller could decide that a disabled person or an older person cannot have access to their own money. This is a terrifying prospect that not only breaches rights but pushes disability rights back about 20 years in this country. There are numerous other issues with the Bill, including a clause relating to medical procedures that goes against the repeal of the eighth amendment, continues to exclude many disabled people from jury service in a discriminatory manner and retains an assessment called the functional test of mental capacity, which has been deemed a human rights violation by the UN Committee on the Rights of Persons with Disabilities.

The Bill is being rushed through without inputs from those it affects. This Bill breaches the rights of disabled people and will create further discrimination. This Bill will be the subject of suffering, litigation, and dispute for years to come. On each occasion people will look back and ask how this was allowed to happen. The Minister of State needs to stop this now and she needs to listen to disabled people and human rights experts. The most glaring issue in this Bill is the disregard for the perspectives of people with disabilities. Article 4(3) of the UNCRPD states, "In the development and implementation of legislation and policies to implement the present Convention ... State Parties shall closely consult with and actively involve persons with disabilities". The Government and the Department of Children, Equality, Disability, Integration and Youth have knowingly, and therefore intentionally, breached this article. In the development of the Bill and in the determination to ram it through this House, the Government is violating an international human rights convention. The report of the Committee on Children, Equality, Disability, Integration and Youth highlighted that "A significant number of stakeholders highlighted that there was no public process organised by the Department to engage with DPOs, family carers or other relevant persons and that there is no plain English or easy-to-read version of the Bill." These are not only significant barriers, but they are representative of institutional discrimination. Joe McGrath, a committee member of the National Platform of Self Advocates, articulated this issue well when he said:

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. ... 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.

In essence this Bill has been developed, designed, and written with no meaningful input from disabled people, disabled persons organisations, and others affected.

The Justice for Wards group has also highlighted a lack of engagement. During pre-legislative scrutiny, officials from the Department revealed that they were using a decade-old consultation. Not only is the Minister obliged to engage with these groups, but they are enthusiastic to be heard. They have been proactive in attempting to engage with the Department but have been ignored. Disabled persons organisations, older people's groups and Mental Health Reform are all eager and available to help and work with the Department and the Decision Support Service. Intentionally disregarding their wealth of lived experience and shared knowledge is disgraceful, as well as violating the UNCRPD.

The speed at which the Bill is being rushed through compounds the harm being done. The 70-page Bill was published on Friday evening and it is being discussed today and tomorrow, with amendments due next week. I will be honest in saying I do not understand half of the Bill. It is written in extremely dense language which can only be understood in conjunction with the original Bill. In such a short timeframe, I do not have the capacity to engage with it all and to draft proper amendments and it is my job to do that. I am relying on the expertise of others to help me understand this, in particular the centre for disability law and policy in National University of Ireland, Galway. What chance is there then for those directly affected by the Bill? Campaigners have asked for time to engage with the Bill and for an easy-to-read version. What is the Minister of State’s response? It cannot just be to ignore them and move on. This is so wrong and it is bad lawmaking. It is something we should not even be talking about in 2022.

The Committee on Children, Equality, Disability, Integration and Youth is also part of the problem here and we acknowledge that our pre-legislative scrutiny process was less than exemplary given the short timeframe we were given. As such, it cannot be considered to represent meaningful and inclusive consultation on the Bill. Reflecting its development without enough input from disabled people, the legislation does not recognise the need for meaningful engagement with people directly affected by this law.

The Bill delegates powers to the Decision Support Service without mandating that office to engage meaningfully with disabled people, older people and people with experience of mental health services in exercising those powers. During pre-legislative scrutiny, it became clear the Decision Support Service had not been meaningfully inclusive of disabled people in the drafting of its codes of conduct. This is worrying for two reasons. First, the practical implementation of this Bill will be through these codes of practice for assisted decision-making, which have had no real input from those affected. This is a blatant example of a paternalistic understanding of disability that ignores the agency and rights of disabled people and older people. Second, it reveals that a paternalistic and non-inclusive culture already exists in this new office. It is essential that the Bill compels the Decision Support Service to work in conjunction with those affected.

The pre-legislative scrutiny report recommended that the Decision Support Service must progress and intensify meaningful engagement with disabled persons organisations and other stakeholders in the development of guidance resources and that it must assign the necessary resources to achieve this in a timely manner. If the new office is to have any credibility, this requirement must be added to the law to ensure the service complies with the Convention on the Rights of Persons with Disabilities and respects disabled people, older people and people with experience of mental health services. All of this comes down to having the decency to engage with those affected and following the State's obligations under the convention. Mr. Joe McGrath of the National Platform of Self Advocates told the Oireachtas committee:

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.

There are several issues within the law, and some that are absent from the law, that need addressing. The first issue is fundamental to the whole framework. It is that the Bill does not go far enough to guarantee presumption of capacity, which is the purpose of the legislation. The law should operate from the position that all individuals have capacity unless it is proven otherwise, similar to the presumption of innocence in our legal system. The Bill, while designed to support people, also gives the right to remove or restrict a person's decision-making capacity. This is an incredibly serious power that needs to be very tightly controlled and limited. Only the courts should have that power. A court has the capacity to listen to medical, legal and other experts, as well as to family members, and to make an impartial decision on that basis. This can and should be the only means by which decision-making capability is removed from an individual.

The Oireachtas committee heard wide-ranging concerns from witnesses regarding the need to strengthen this principle in the Bill. At all stages, relevant persons should be presumed to have capacity unless a court decides otherwise. The obligation must be on other parties to establish a lack of capacity rather than the relevant person having to prove his or her capacity. In its submission to the committee, Independent Living Movement Ireland was very clear on the need for the Bill to provide for "the presumption of capacity and the protection and promotion of a person's will and preferences". It called for specific reference in the legislation to the need to "ensure the autonomy of disabled people to live the lives of their choosing".

During the pre-legislative scrutiny process, stakeholders raised issues with the Decision Support Service's draft codes. They pointed out that a wide range of actors, including legal practitioners, financial professionals and healthcare professionals, can carry out assessments of capacity as they see fit. These individuals can then make decisions about whether to respect the relevant person's decision based on their own assessments, without any recourse to or oversight by the courts. This simply cannot be allowed. It is a highly problematic and dangerous proposal that gives a whole range of people, albeit possibly well-intentioned, the power to remove or limit an individual's decision-making capacity. This is incredibly worrying and irresponsible. I gave the example earlier of a bank teller being given the power to stop a person with a disability or an older person from withdrawing money from his or her account. The standard must be a presumption of capacity and it is up to the State and others to prove otherwise in court. This principle must be embedded in the legislation. At the moment, it is not sufficiently articulated, as evidenced by the Decision Support Service's own draft codes.

The second issue concerns what is referred to as the functional test of mental capacity. This practice has been deemed incompatible with Article 12 of the Convention on the Rights of Persons with Disabilities. The functional assessment of capacity typically focuses on whether a person is able to understand information and use and weigh the information that is relevant to a decision. General comment No. 1 of the UN Committee on the Rights of Persons with Disabilities clearly states that the test should not be used to deny someone's rights. The committee recognises it as an unreliable method of assessing the inner workings of the human mind. The test discriminates on the basis of disability and has been recognised as a subjective method of assessment, with individuals receiving different results depending on the person conducting the test. It is truly shocking that the Bill does not make provision for the ending of this practice. The Oireachtas committee's recommendation in this regard was very clear, stating that the Bill should remove the functional test of capacity and replace it with an obligation to acknowledge, interpret and act upon the relevant person's will and preferences, in line with the Convention on the Rights of Persons with Disabilities.

Third, the Bill does not remove a section of the Assisted Decision-Making (Capacity) Act 2015 that reflects the situation prior to the repeal of the eighth amendment. An advance healthcare directive is a statement people can make on the types of medical or surgical treatments they want or do not want to receive if they are unable to make such decisions in the future. However, under section 85(6) of the 2015 Act, an advance healthcare directive is not valid or applicable if it includes a refusal of treatment where such refusal "would have a deleterious effect on the unborn". Parts of an individual's advance healthcare directive may be disregarded if refusal of a treatment would have such an effect. This means a person's will to receive or refuse a required treatment is restricted if she is pregnant. This section reflects the language of the eighth amendment and it has no place in post-repeal Ireland. Professor Eilionóir Flynn of NUI Galway stated at the Oireachtas committee: "These sections are simply unnecessary and can be deleted from the legislation." It is welcome that there appears to be a willingness on the part of the Minister of State to do that. However, the question remains as to why this provision was included in the draft we received last Friday. It is evidence of how rushed this legislation has been.

The fourth issue is that the Bill continues to exclude many disabled people from jury service in a discriminatory manner. Section 82 is highly problematic and discriminatory in this regard. While it recognises the right of deaf people to sit on juries, it goes on to exclude whole cohorts of people from doing so. It introduces the paternalistic language of "sufficient mental or intellectual capacity". Furthermore, there is a typographical error in the Bill in its reference to "incapacity", which does not make sense in the context. This language is inconsistent with the 2015 Act, which deliberately does not include any reference to specific cognitive impairments. Disabled Women Ireland has pointed out that this type of language focuses on the person's impairment and how it may make it difficult for him or her to participate in jury service. It does not recognise or place any onus on the State or the Courts Service to reasonably accommodate such persons to participate.

This paternalistic and medicalised model of disability, focusing on incapacities rather than putting forward progressive laws and associated supports to assist disabled people to participate in juries, must go. Serving on a jury is a civic responsibility in our Republic but this Bill will exclude whole cohorts of people from doing so. As stated at yesterday's briefing, many people try to get out of jury duty but there are many disabled people who want to serve. Instead of empowering these individuals, the Bill intentionally excludes them. Back in 2013, the Law Reform Commission report suggested that much more inclusive and progressive language should be used. That is the type of approach we should be pursuing.

Another point in respect of section 82 concerns its implications with regard to mental health, which are disgusting. It makes provision to exclude:

A person who suffers or has suffered from mental illness or mental disability and on account of that condition either— (a) is resident in a hospital or other similar institution, or

(b) regularly attends for treatment by a medical practitioner.

This is highly stigmatising language. Anyone who has or has had a mental illness and who has seen a doctor several times about it could be excluded from jury duty. On what basis should that be done? Why are we even talking about such a thing and how can it be considered in 2022?

There are several other issues that need attention but which I can only mention briefly in the time remaining. The removal of information on treatment decisions from enduring powers of attorney, and forcing people to create a separate advance healthcare directive instead, creates additional complications and barriers.

Disabled persons organisations, legal experts, advocacy organisations and others argued that this would be less accessible, more complex and inefficient.

Mental Health Reform has highlighted outstanding issues regarding involuntary detention. As the legislation stands, people who are involuntarily detained do not have the right to have their advance wishes about treatment respected, even though they had the capacity to make decisions about their mental health care and treatment at the time of making their directive. No other group of individuals is specifically excluded from this legal right. This exclusion is contrary to international human rights standards.

As highlighted in pre-legislative scrutiny, family careers are being treated differently from decision-making representatives appointed by the court. Those appointed will receive expenses and remuneration, but this provision has not been extended to carers. This is another case of the State taking family carers for granted. The committee heard the challenges carers face with how little support is offered by carer's allowance and the conditions for qualifying.

There is the bizarre requirement for the Irish Human Rights and Equality Commission to engage with the National Disability Authority in carrying out its monitoring role under the UN convention, rather than mandating the Irish Human Rights and Equality Commission to engage with disabled people's organisations. The National Disability Authority is not an disabled person's organisation. The Bill specifically requires IHREC to engage with organisations other than those representing disabled people.

I have touched on some of the major issues with this legislation, but even more significant are the unknown issues. Because the Department and the Decision Support Service have not meaningfully engaged disabled people, older people and people with experience of mental health services, there are potentially significant matters we are unaware of. The practical purpose of Article 4 of the Convention on the Rights of Persons with Disabilities is to make laws informed by those they will affect most. Instead, this breaches the rights of disabled people. The people it will affect most have been excluded. There is still time for the Minister to do the right thing and halt the process until adequate consultation has occurred. This legislation will have far-reaching consequences for whole communities of people. It will be the subject of litigation and human rights challenges, all of which could be prevented if the Government adhered to its human rights obligations by respecting and engaging with the people affected.

I again quote Joe McGrath of the National Platform of Self Advocates. Not only does he have a better understanding of the convention than the Government, but he sums up the issue very well, "Let's get this legislation right so we don't have any constitutional challenges ... We're the ones who are going to have to live with it". I cannot implore the Minister enough to halt this deeply flawed and potentially dangerous situation and to listen to those whose lives will be shaped and limited by this legislation - nothing about us, without us.

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