Mr. Damien Douglas:

Speaking more about families and carers of those with intellectual and physical disabilities, an awful lot of them have not had full participation in anything because of their disabilities. We are looking at the needs of the carers who have to provide, as advocates, for the people they care for and the needs of those who are intellectually or physically disabled. For some people, such as my girls, their disabilities are obvious. If anyone looks at them would say, "God, the poor things. It is shocking." There are an awful lot of families whose children and young adults have massive disabilities and just because they look normal, their needs are not perceived as being as severe as they are, or their behaviours are not seen as bad or disruptive as they are. All of those behaviours affect the normal things we all do, such as hopping into the car for a Sunday afternoon drive, going to McDonald's for a takeaway, or going to the Phoenix Park. We cannot do that just on a whim. So much needs to be done. We cannot even hop on the bus to do that because so many other things have to be taken into account. It is around that whole mobility issue and the needs. Many of our children and young adults cannot be put on a double-decker bus because, in many ways, their behaviour is so disruptive to other passengers or their own needs are such that it does not allow them to interact with people in that way. The choices we have are very limited. That is why it is so important to have a means of transport that suits the family needs.

As I said earlier, only a third of family carers get carer's allowance, and the maximum one will get is €224. Most family carers will not even get that. That is not both parents. It is only one carer in the family. Carers may be allowed to work up to 18 and a half hours per week, which is taken as means, so there is not even the luxury of both carers perhaps working full-time jobs and then having the money to buy the €50,000 vehicle or the vehicle for the sister or whatever else. People have to club in together or they rely on charity or community groups to help fund them with that. Of itself, it is great that people are willing to help, but it does nothing for one's pride or dignity. One knows one is the object of charity.

One is already in a situation whereby one has enough things - I will not call them crosses as that is not the word - to make one's day difficult and long. Before I came here this morning, we were up at 7 a.m. trying to get the two girls ready to go out. Mary was going to bring them because I was coming here. There is an awful lot of stuff to be done before one does anything else. I do not give out about any of that as that is part of our normality, but what would make our normality easier to bear would be not having to worry about whether I can afford to change the van when it is next due. I pay a huge amount for insurance because of the type of van it is. Where does that come from? That is where the grant one would get every month could be very useful, to be able to put that towards the annual insurance.

Deputy Ellis asked about the NCT. Thankfully, I have only once kept one of the vans more than four years and we had the NCT, but there is no help towards that. There is no help towards the running cost of the vans. There is in England, but not here. People cover all those costs themselves, which is fine. That is why most people, if they can, will try to change them every two or three years to minimise those types of servicing costs. If one gets a hand-up initially, as the €5,000 grant usually gives, it was easier to do that once one got started, but for those families now who are starting off and apply and if they are lucky enough to qualify, they have to bear all those costs themselves. The sum of €16,000 is the VRT grant one will get and, as far as I am aware, that is all one gets back. The adaptations to my vehicle will cost over €5,500, with a new floor and changing the lift every time. That is not covered because the VRT, as far as I understand it, has taken up the maximum availability of assistance on that.

They are hidden costs. I am not giving out. I am just saying it is part of the lived experience of many family carers that these are extra burdens they have to carry at a time when they are financially constrained by means tests and everything else.