Mr. John Dolan:

Go raibh maith agat, and thank you, Mr. Kearns.

I wish to thank the Cathaoirleach and members for this opportunity to contribute to the committee's work. In preparing for this hearing, I have paid particular attention to the order of reference at item 2 (a), (b), (c) and (d), namely, how such provision might operate, safeguards, constitutional, legal and ethical issues and unintended consequences.

The Disability Federation of Ireland, DFI, is a federation of over 120 member organisations working with people with disabilities to implement the United Nations Convention on the Rights of Persons with Disability, UNCRPD. Our mission is to ensure the equal participation of disabled people in society.

As the chief executive of DFI, I am comfortable about bringing my insights and thoughts to the committee's attention to assist in developing its report and recommendations. I aim to reflect the thrust of the foundational values of DFI, which are to support disabled people to have full and meaningful lives. Member organisations of the federation may have different or similar views or perspectives, as this matter, like no other, surfaces thoughts, emotions and questions which can be as unsettling as they are varied and challenging, while the objective here is a benign one.

Assisted dying is the focus of these hearings yet dying only has meaning as that which always brings a person's life to a conclusion.

Therefore, this presentation will focus on living and the quality of that living. The work of the committee comes as Ireland is taking unprecedented steps in order to implement the UN convention including, but not limited to, the following articles of that convention: Article 19, which is on living independently and being included in the community; Article 10, which provides for the right to life; Article 17, which relates to the integrity of the person; and Article 25, which addresses health. Three of those articles use the word "enjoyment" while the other one talks about respect.

This fact helps me to make the point that the committee's remit must be framed around, and subject to, being of assistance to people where, as a State, we have supported them to have had a full life. Many disabled people in Ireland are caught up in a daily cycle of worry about how to survive on an income that the State has recognised for decades as wholly inadequate because it does not factor in the varied and necessary additional costs of living with a disability. At the same time, people are consumed by worry about their lack of or marginal home support hours, which are needed before they can ever dream of having the supports that would make them independent members of the community.

In Ireland, disabled people have reported poorer health status than the rest of the population. They are often subject to intersecting layers of social and economic disadvantage and other barriers that drive health inequality. As a result, they frequently experience worse health than people who do not have disabilities. This is beyond the direct effects of their disability, health condition or impairment. Evidence shows that social, physical and attitudinal factors hinder health outcomes in terms of access to services and quality healthcare.

At the same time, it is fair to say that Ireland has a strong record in ensuring that people will survive life-threatening events, thus avoiding death at that point, although its actions are not sufficient to ensure they can have a full life afterwards. Within the past year, the Department of Children, Equality, Disability, Integration and Youth, published the Action Plan for Disability Services 2024-2026, which outlines the necessary increases in community-based disability services to address unmet need and meet demographic change over the coming years. In addition, the Department of Social Protection published the Green Paper on disability reform to provide for the currently unmet costs of trying to live with a disability.

My point is that Ireland is not giving sufficient assistance to disabled people to live their lives. I am asking the committee to consider how people with disabilities might think and feel about what may be proposed here in the light of their daily experiences, day in and day out, and to factor that into its report and recommendations. This is about relating the trajectory and experience of somebody’s actual living within the context of any proposals that the committee makes. It is also vitally important that the State does not unduly or unintentionally have an invisible hand or influence in the decision of someone to end his or her life because it has not supported disabled people to have a life of independence equal to others. I will finish with the words of Victor Hugo: "It is nothing to die. It is frightful not to live."