Mr. Damien Douglas:

Sometimes it is very easy. There is a normality in our house that nobody else has. We have had to normalise things to work for us, such as the use of hoists. Our girls are in nappies and we have considerable extra costs. Thankfully, the HSE supplies those, but it does not pay the bin charges for all of those nappies. I am not giving out, but it would help to have them paid for. As part of the carer's grant, we get the homemaker's grant. We get €35 per month towards bills, which, again, is great, but we have to have electricity on the whole time. Our girls are on pumps and hoists and use electric showers. Some €35 per month is certainly a great help towards it, but I got an electricity bill for €312 the other day. That is the kind of bill I get every time. That is normal for us, because that is the amount of electricity involved.

I had to bring the girls into St. James's Hospital yesterday to get blood tests. I could find not a wheelchair parking space anywhere. I drove around the hospital two or three times. There are considerable difficulties such as that. The van is slightly larger than a car space and one needs space at the end for the tail lift and hoist to come out. I eventually got a space. Planning takes much longer. One has to give oneself much more time to get to places because there are many other difficulties and one has no certainty. I have no faith that the new children's hospital will be any better equipped for families in a similar situation that will have to use it.

In many ways, the State is extremely helpful to people with disabilities through the medical card scheme. The scheme covers the costs of many things, but there are many other things that are not costed. We do not have any carers coming into the house. Anything that has to be done, we are doing. It has never been offered to us. We have never looked for it. We can manage. However, I know if I have to look for it, I probably will not get it, because we have managed all of these years, unless I break a leg or Mary dies or has a stroke. It would then be extreme and we would probably get an hour in the morning and half an hour in the evening, which would be no good because the needs are very different from that.

Many carers are doing many things behind closed doors that even people on their street know nothing about. People are proud. It is nobody else's business, and, yet, they suffer because of that. Sometimes we suffer because what we can do is so limited in the absence of some kind of support. It is great in a way that the support is there but, in all honesty, the level of support is minimum. It is a chore in that it is very difficult one wants or needs to change one's van. Nowadays, one cannot even get a van because of the shortage in supply. I have been on a list since last November. I am told that a van probably will still not be available by this November. That is the reality. It is not as though one can pick out any vehicle. Our needs are very specific and we need a very specific type of vehicle. Those vehicles are just not there. We are lucky enough in that we are patient - for a bit longer anyway. Not everyone can be patient, particularly as their needs are such that they are on the edge nearly all of the time.

Carers are on the edge twice. They are on the edge for themselves, as carers and families, and on the edge for the people they are looking after. The people the carers are looking after because they cannot do anything for themselves. They cannot make decisions. No matter what the capacity legislation says, they have no capacity to do so. Carers are on the go twice and their energy is going into that the whole time. There is no excess energy for much other stuff. We had to make considerable arrangements at home to come to speak to the committee today. I am very thankful to my wife for doing that, because the message I have to give may not have been heard other than that. I appreciate the opportunity.