Marie Sherlock (Dublin Central, Labour) | Oireachtas source

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.

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