Ms Clare Duffy:

The one on the optional protocol is an honours leaving certificate question that I did not study for. Clare Duffy's view, separate from Family Carers Ireland, is that it is all about the complaints mechanism and what is not working about the UNCRPD. So much is not working. If I am a person with a disability, I have the right to live independently in a place of my choosing. I know very few adults who require care who can say that. They are still living with their mam and dad who are in their 80s. To me it is that simple. There is so much that we just have not got right yet. It took us a long time to ratify it in the first instance. Anyway, that is honours leaving certificate stuff.

The Deputy also talked about the Assisted Decision-Making (Capacity) Act. Ms Cox and I have been all over that Act since it was signed into law in December 2015. There were seven-plus years between its enactment and full commencement on 26 April. We have so much to say about the Act from the perspective of the carer. Áine Flynn of the Decision Support Service has responsibility for the Act, which makes provision for the relevant person, namely, the person who has diminished capacity. However, there is no provision in the Act for the family members or friends who act as the decision supporters or interveners and who carry huge responsibility. That is the problem.

We like the Act. We welcomed the Act. Anything is better than what went before. However, that is the issue. Deputy Buckley asked if there was anything in that Act which could help address that concern which parents have about what is going to happen their child when they are gone. Yes, there is something there. The Act is all about recognising that the relevant person has diminished capacity, and then being able to step in at whatever level, or three levels, to support them in their decision making. The only comfort which I think a parent could get in that instance, and Ms Cox can correct me if I am wrong, is knowing that when they are gone, they have a sister or another sibling who will take up that role, or do something like that. In a way, it does not give them the comfort of knowing where their son or daughter is going to live when they are gone, and that they can see the wee house, and the little independent place where they are going to be. It does not give them that comfort.

The other thing which the Assisted Decision-Making (Capacity) Act does is it allows for the legislation to commence the advanced healthcare directives, where I can say, "Look, if anything happens me, God forbid, I do not want to be resuscitated". It allows me to articulate my future wishes. However, I do not think it is going to fix that big problem of the comfort families derive from knowing that their loved one is going to be looked after when they are gone.