Ms Catherine Cox:

To be fair, the decision support services have engaged with us. We have met Áine on a number of occasions. This legislation will be positive for the majority of family carers. The group that we feel will face the most difficulty comprises the 18,000 people who care for people with profound disabilities and will have to go through the courts. In terms of being wellinformed, the court rules for this legislation have not yet been published. When we ask when they will be, we are told it will happen as soon as the Act commences. There will then be a rush for family carers to see what they need to do to get to the courts. If those rules could be published sooner rather than later, it would help.

The GDPR issue is a big one. What would happen if, God forbid, something happens to Evan or Daniel and there is a medical emergency, and because of the backlog in the courts, Ms Johnstone still is not the decision-making representative on paper? She has to go through the courts. What are Ms Johnstone's rights in terms of information? Can a doctor share information on Evan with Ms Johnstone if her status as the decision-making representative is not in place? Those are the kinds of worries and concerns that family carers such as Ms Johnstone have. We need clarity around that issue. That is where the transitional period would help so that in that time, the carer is not in limbo and knows he or she will be treated as a designated representative until such time as they can go through the courts system. That would be helpful.

The Deputy asked what information Family Carers Ireland has received. We have probably received the same information as other providers. We know the legislation and have examined it in depth. However, things such as the court rules that have yet to be put in place cause concern to carers.