Ms Catherine Cox:

That figure of €20,000 was purely the income coming into the family, so it was not taken into account because a question was asked in our State of Caring report. That is probably why, further down in the report some 23% of people said they were struggling and had cut back on essentials. We did a Care at Home: Costs of Care Arising from Disability survey last year as well and we found that the cost of caring in a home alone is in and around €145 per week, not taking into account other costs. The Deputy can see how nobody could live on €237 per week, which is the carer's allowance. When we talk about carer's allowance reform being required, we want the means test to be abolished but we also want it to be a fair payment. A sum of €237 per week does not cut it in terms of costs.

I refer to the Assisted Decision-Making (Capacity) Act 2015, which Ms Johnstone mentioned. While we welcome it, and like the Deputy, we were waiting for it to be commenced, there are areas that challenge and concern family carers. The Deputy asked if enough has been done to support family carers. My answer is that not enough has been done. Our issue is that we know there are about 18,000 family carers like Ms Johnstone who are caring for somebody with a profound and severe disability and who we know would have to go through the courts to become a decision-making representative for their loved one as soon as the Act commences.

Given that our court system and services are already under pressure, we have continuously asked for a transition period of something like three years, which would allow carers to transition and become decision-making representatives, so that they would not clog up our courts as soon as the Act commences. We feel that is a reasonable ask, given that something similar has been done for the wards of court, which has been given a three-year timeline. That would mean that carers like Ms Johnstone would not be left in limbo until such time as they became that decision-making representative through the courts. We have asked for that and we have asked to meet the Minister, Deputy O'Gorman, to discuss it. We have not got that meeting so I ask the meeting to put that forward and to seek a meeting with the Minister of that issue.

There are other principles within the Act that cause us some concern. One such concern is around a person's right to make unwise decisions. This raises concern with family carers. For example, one family carer told us about her son, who has an intellectual disability and is living with Down's syndrome. As soon as he gets his disability allowance he will happily go into McDonalds, buy one of everything on the menu and eat it all. He will be happy to do that, His mother said that he has done it on occasion and that has been extremely ill as a result. That is an unwise decision, but the consequences of that decision fall back on the family carer because he is sick for days and she is the one who is helping him get through that. However, he has also spent all of his money so he has no money for anything else and he has no money to put towards the house bills either.

There are issues in there that cause family carers some concerns. They can be overcome but it is about supporting and informing family carers. In the survey we did last year, 68% of carers said they did not know about the Assisted Decision-Making (Capacity) Act 2015. They did not know what it meant for them and that is despite the good work that is happening with the Decision Support Service office. I know it has been out there talking about it but carers are still not aware. Family Carers Ireland is running a number of information called Listening to Carers over February and March, in which we will talk through the Assisted Decision-Making (Capacity) Act 2015 and the positive things it will bring to bear. Hopefully, it will also support carers through those challenges. If they have to go to court we will support them in doing that to become decision-making representatives. However, there are areas of concern, which can be overcome if we could get to meet the Minister and if we could talk through them. Hopefully, he could put our minds at ease on some of the concerns we have.