Mr. John Dunne:

There is quite a lot in that. We are not talking about unintended consequences; we are walking into this with our eyes wide open. Nobody need tell me in six months’ time that we did not plan this or intend it to happen. What can happen? A light switch is flicked the day this legislation is commenced and from that day forward, in a family situation where previously profoundly disabled people were being looked after by their families and the families were looking after them the law will say that a person is his or her own person, decisions may not be made for them and their business may not be discussed with third parties. We have been saying for a while that we should take one obvious area like medical situations. What will happen in a medical situation? The answer we get is that we are not to worry about that because the good news is there is different legislation which says if a doctor feels a need to do something he or she can do it and he or she does not have to worry about capacity. We are basically saying we will take the family out of it, the doctor will act and will not be able to talk about the decisions he or she is making due to GDPR issues. Is that an improvement? It is not from a family carers' point of view. To add insult to injury, when the doctor is finished that person is going back to the home to be looked after by the same family. The family has been learning how to do things for loved ones over 18 years and all of a sudden they find they are through the looking glass in a legal sense and they do not know what they can and cannot do. They also do not know what falls within reasonable discretion. If they give somebody cornflakes in the morning instead of Rice Krispies is that abuse or is that reasonable? They will not have any control over a situation like that. People will make a complaint and the DSS will adjudicate. That is a nightmare situation for families.

We are talking about the question of will and preference rather than best interest but on the medical front it is the opposite. Will and preference go out the door in favour of best interest because there is a lacuna until a decision-making representative is appointed and even then there are limits on what the decision-making representative can decide. The doctor swoops in with his or her overriding ability to diagnose a medical requirement and intervene with no restriction of any description. That is the kind of jumble we are looking at. From a family point of view it is threatening and uncertain.

The following is more of a colourful anecdote than anything else but an adult might get a disability allowance for example. I am aware of situations where people get their disability allowance, go down to McDonalds, eat the entire allowance in one sitting and come home. These people are more than sick and it comes out of both ends. Who is left to clean up all of that? The family. The money from the disability allowance has been spent at this stage and the family has to pay for the food, heat, cleaning and whatever else. That is not ideal. The committee will be happy to hear that an advocacy group got involved in one of these cases and said this was not a good way to spend the money. They said that by all means some of the money could go towards McDonalds but it is not a good idea to eat €200 worth of burgers at a time. They took some of the money and spent it on training and helpful activities etc. That was an improvement but nobody stepped back and said that a family up the road was feeding this guy, clothing him and whatever else without him making any contribution to it. Where does will and preference come into that? Is there something about the social contract around the family? If we are treating somebody as an equal person surely he or she has responsibilities as well as entitlements and rights. I do not want to sound too unreasonable about it but where that equation goes badly wrong is in the family because the family will never hold their loved one to account for his or her responsibilities. The system only talking about will and preference ignores the fact that if one is in a social situation and is being treated as and acting like an adult, that is a two-way street. This will collapse under its own internal contradictions, largely because we are not preparing for it properly. However I am not saying it is impossible to do it.

We can go back to the question of not having guards on beds and it is true. I have seen the situation where someone is quite distressed in hospital and trying to climb over the side of the bed because he or she wants to get out. Whether he or she needs to or not and whether it is a good idea or not is another matter but he or she is distressed about it, which is fair enough. It may be a good idea not to have a barrier. In an institutional setting, a certain economy of scale can be achieved to manage that. If we want to do that in a home then it can be done but it requires a staff of four full-time carers to roster 24-hour cover. Is the expectation that the decision-making representative is there 24 hours a day? Is the expectation that there is nothing wrong with that and that he or she can keep an eye on someone 24 hours per day? I do not know if that is a good answer to the Senator’s question but it is a good question and I do not know where to begin or finish answering it. Those are some examples anyway.