Mr. John Dunne:

The first thing to say is that the imminent risk one is new. Until I started reading the Bill, frankly, we had no indication that was coming. In terms of our experience, that probably sums it up. Other people have said it, too. This Act was passed in 2015. There was some communication beforehand, to be fair. The civil servants in the then Department of Justice and Equality were quite proactive in going out and engaging. Since then, there has been total radio silence. Any time we have plugged in, we have been told people are very busy in working groups designing things and we will have to wait to see the outcome. There certainly has been no engagement. I was struck by the reference that in making the change in legislation about the imminent risk, the Department had listened to the stakeholders. It had not listened to us and we would consider our organisation to be a significant stakeholder.

On the question of decision-making representative expenses, it is fair to say that the attitude of the Decision Support Service, which is responsible for the administration of the scheme, is that it is entirely a matter for the Minister, which it probably is, but the wording of the current legislation does not include it. We have not engaged with the Minister about it. That is not for want of trying. We have written to several Ministers over the years, mainly raising the question of demand and how the courts were meant to cope. We have never got an answer, even to reminders.

The fundamental issue in terms of the response we have encountered has been around the spirit of the law. Very early on in the consultation process, we organised a meeting for some senior figures in shaping this legislation with a number of carers. One of the carers, Damien, was a psychiatric nurse and therefore not a person without some skills, who had retired and given up work to care full-time with his wife for his two profoundly disabled daughters. In the context of talking about the legislation, he said that hand on heart, he would love to know if his daughters would prefer cornflakes or Rice Krispies for breakfast, but there was no way of telling. Somebody looked him in the eye and told him that really, if he was doing it right, he should be able to know. That is the spirit behind this legislation. At the same meeting we talked about a transition phase for families. It should be noted that a family will have been caring for a person for 18 years before they are covered by this legislation. We are not talking about a trivial investment by the family. When we raised the issue of a transition phase for families at the meeting, we were told that families are wonderful, but they cannot really be trusted. Our response to that is, frankly, thank you very much, State. We all know that the public sector is wonderful but it cannot really be trusted. At the end of the day, that is the nub of the problem.

We are told routinely that there is no such thing as a next of kin. I am not a lawyer, but I did study law back in the good old days. My understanding is that we operate a common law system. There are various sources of common law, including custom and practice. The note which tells us that there is no such thing as a next of kin, almost tut-tuts at the fact that unfortunately, this is a very prevalent issue. There are even forms in hospitals that mention next of kin. I would have thought that there is a fair bit of custom and practice around next of kin. Why does next of kin matter? It matters because when this legislation is commenced, a light switch goes off. The current grey area around next of kin, as it were, disappears. That is fine. The two profoundly disabled, non-verbal and non-mobile daughters to whom I referred earlier, who are unable to use technology, are assumed to be competent under this legislation. We are the only country out of 147 countries implementing the UN convention that has adopted the approach of assuming everyone is competent and working backwards from there. Everybody else sought to shore up existing rights and entitlements on the basis of getting to the standard the HSE decides. One could argue that in the long run, the net result will be the same. One certainly cannot argue that the transition phase between the two is the same. In Damien's case, he has to wait around seven years before we gets to be a decision-making representative. If he brings his daughters to the doctor, his daughters are now judged to be competent under the legislation. The doctor is no longer legally able to discuss the daughter's medical needs, medication or whatever else with Damien or his wife. That is the legal effect that we are putting into place. We all know that families are wonderful but they cannot really be trusted.

We got an invitation to attend a meeting with the Mental Health Commission to talk about this issue. We said we were happy to do it. We were asked to bring along clients or designated persons. We said that the people who we really want to talk about, at the end of the day, are not going to be able to do much by way of evidence-giving on the topic. The commission told us that that was who it wanted to hear from because it liked to be authentic. We told the commission that to be clear, we would wheel in two non-mobile, non-verbal people and they would look at the members in person or on a screen. We asked how long the meeting would last and what would happen after that. The invitation has not really followed through. To be fair, it probably will, especially after today. That is our experience of trying to engage on this issue.