Ms Jane Johnstone:

I will add to what Ms Cox has said and speak to my concerns as a carer. On the GDPR issue, I manage an individualised budget for both of my sons, which I get from the HSE. I get a certain amount of money over a 12-month period. There is both core funding and an individualised budget. From that individualised budget, I organise home supports and respite for my sons. I also do all the invoicing, booking and purchase orders. It is like running a little business but it works well for a family like mine. We are a one-parent family with two men who have significant needs. That is of concern to me. I feel I am in limbo when it comes to the running of the individualised budget.

Ms Cox mentioned attending at accident and emergency departments. I also worry about the issue of consent. Evan, my older son, is non-verbal so he cannot give consent. If he needed a medical intervention, where does that leave both of us? How would that impact his health? My younger son, Daniel, who is 18, has language. He would not have the ability to carry on a full conversation but he can make decisions, which I have always empowered both of my boys to do. If Daniel were in hospital and a medical procedure were to be suggested, he would say "No", which returns us to consideration of unwise decisions. Those are some of my concerns.

There is a lack of awareness. As Ms Cox said, 68% of the family carers we surveyed said they were not aware of the legislation. Many of my friends are carers and had no idea there was such legislation. We need to address that issue and get clear communication out there. Being a family carer is a very busy and often stressful life. We do it because we love the people for whom we care. There is not a thing in the world we would not do for them. However, we cannot deny it is often a very challenging life. The last thing we want to do is to put additional stress on people who are often doing their best to hold things together. It is important that they are supported through that. We in Family Carers Ireland will do everything we can to support family carers. However, we need the State to help and support them, and to ensure that no additional stress is caused.

Ms Cox spoke about the transitional piece before we can get to the Circuit Court to become decision-making representatives. There is a transitional piece around allowing us to get through that and to be able to make informed and positive decisions for our loved ones who are not in a position to make them for themselves. That space is very important.