Ms Catherine Cox:

It is a good question. With the carer's allowance, we would engage quite often and very regularly with the Department of Social Protection. The Minister, Deputy Humphreys, has committed to looking at reform of carer's allowance, which we would welcome.

To go back to what I said earlier, we want to see carer's allowance as a non-means-tested payment. It should be based on need. There is then a concern that people could defraud the system when making a claim, but I would say that very few people could do that because there would still be medical criteria. People would still need to have medical reports from consultants and doctors saying that the person requires full-time care. A person has to be providing 35 to 40 hours of care per week anyway. Most carers like Ms Johnstone provide far more than that. There are other checks in place that would assure there would not be fraudulent claims. That would not be an issue.

In terms of somebody like Ms Johnstone who has cared for her boys for all their lives, the amended Assisted Decision-Making (Capacity) Act means there are three types of support a person can provide to a loved one. A person can be a decision-maker assistant, co-decision-maker or a decision-making representative, DMR. That last one applies when it is found that, for example, the person has a profound disability and cannot make certain decisions for himself or herself around finances or health. While Ms Johnstone has done that for all of her sons' lives and will continue to do so, in order for her to be recognised as that DMR and treated as such - for example, for information to be shared in a medical crisis or for financial information to be shared - she will have to apply and have it agreed that she is their DMR. She will continue to do what she has always done but she needs a court order to say that people from banks and medical people can talk to her because she is the designated DMR. That is why the new legislation is important. As I said, that legislation would be very positive for many other carers but there are also some concerns that we need to address.