Mr. Damien Douglas:

I am only familiar with the scheme in Britain through families like ourselves who are in the same situation. We are part of a support group of families with children who have the same conditions that my girls have. The Motability scheme in Britain is very useful for many families at a nominal cost of a few hundred pounds. It might have increased to a thousand or two. They can change their vehicles every three years. It is a vehicle of their choice rather than one imposed on them. It is a vehicle that meets their needs rather than somebody else saying what they want. The amount they pay is minimal. As far as I know, the scheme covers insurance and tax. Any repairs that are needed are covered as well. Something like that would be very advantageous here. As far as I know the families do not actually own the cars but at the end of the three years they can hand them back and qualify for new one. They pay money again but it is a minimal amount. In Ireland, by contrast, you buy the vehicle. As far as I know, you cannot lease it. You have to purchase the vehicle, as passengers. You cover the cost of it. The VRT is refunded. As part of the scheme, the tax is covered for the vehicle, which is much appreciated. However, you cover your own insurance and all other costs such as repairs. They are huge amounts. In our own case, it is very hard to get insurance for a vehicle like ours. As far as I know, AXA is the only company that will cover it. I have tried numerous other companies to see if I can get a cheaper quote but it is not available. As we cannot afford to have any difficulties with the vehicle, we have to maintain it according to garage specifications. The kind of mechanical input that has to be made into new vehicles afterwards is very limited. Sometimes you are lucky and only have the regular yearly service. Other times you are banjaxed, something goes wrong and you are gone. I had a problem recently with a hoist. I had to change the hoist and the new hoist let me down with the girls stuck in the van. I could not get them out. That was an emergency for us. We had to manage the cost of the hoist ourselves, as we do with the maintenance, repairs and servicing. A scheme like the Motability scheme in England could be very useful to look at here.

I do not think any carer or anybody expects to get something for nothing. We do not. We are happy to pay reasonable amounts of money. I ask the committee to bear in mind that we are coming at it from a different point of view. We are already, pardon the pun, disabled in the sense of the people we look after. We are disabled in the sense of the money we are allowed to earn before we lose any abilities. It is all capped. There is a limited amount of money available to us for what are termed "luxuries". They are not luxuries; they are essential to have any kind of limited freedom as a family. We are always looking over our shoulder and in our pockets to see if we have this or can plan for the cost of that. If not, we must consider how we are going to manage. The last thing any of us want to do is depend on charity or on the kindness of strangers. We should not have to do that. We are lucky that people are so generous. We are lucky too that the State in a sense is generous in what it gives us, but in all honesty it is not really enough for our current needs. The needs of those who do not qualify on a technicality are as great, if not greater. I refer to the families of those with intellectual disabilities, in particular, who cannot be drivers themselves. Their need for transport is just as great if they are to have an ordinary day’s activity. They will not go to work, but they need to go to school, attend day services and attend medical appointments, etc. You want to give families a degree of autonomy to give them that freedom. In ten years’ time I will probably be too old to drive - I will be 75 - but my girls’ needs will not have changed. The services we can provide ourselves may be very different. I am afraid to think of what that might be like. As I have said, you cannot get on the 25A with two wheelchairs. Many day services do not provide transport. It is left to your own means. Something that addresses such issues is needed.

Senator Seery Kearney asked what the committee can offer. I suggest it should listen to families about their needs, and not about what somebody in an office in town understands those needs to be. If it listens to the families, it will hear about the different needs in different parts of the country, depending on what supports are available in various places. We talk about the postcode lottery in relation to service provision, and likewise in relation to transport. Nobody is looking for anything exorbitant. We are just looking for the same opportunities that other people have.