Ms Angela Locke-Reilly:

I will make a point as a member of one of those families. My son has high-support needs. Many of the costs are hidden costs that one would not think of. My son might go for two months at a time only sleeping for two hours per night. We are up, as a family, for 22 hours. We are using electricity, eating and watching television. We have the lights on. He also has loads of extra gadgets because he would not play with toys or anything like that. He would not get the concept of it. Much of the time, we have lights on and things that make noises, buzz and whir. My electricity bill is a great deal higher than that of any of my friends.

My son has continence issues. His continence packs weigh a tonne. He is 15 so the packs are heavier than they would be for a baby. One is not talking about babies' diapers. My bin costs, because they go by weight, are through the roof. People do not often write issues such as that on surveys because they often get asked about things such as private therapy. Do not get me wrong, therapies cost a lot. That is a very valid point. However, one has to think about the hidden costs as well.

When my son was born, because there was such as a lack of services at the time, a few other parents and I started our own organisation to start providing services ourselves.

We worked every hour God sent for many years to build it up to a position where people would be scared not to offer us what we deserved. If we came knocking at your door to ask about your services, we wanted to know that you were hiding behind the couch. We did that on purpose. It should not be necessary to do that. I got a master's degree in disability studies to be able to better support my child. I should not have to do that. We have to do all these extra things. Often the things people struggle with and the fight we have are unseen. Something I keep banging on about to Ms McDonagh is the cumulative effect of having to advocate, constantly needing to complain about money and having to fight. A person gets fatigued and beaten down by that over the years. When people constantly feel that schools do not want their child, services are not there and no one wants their child, that continuous chipping away over the years takes a real toll on their mental health. Sometimes when people look at the research they see not the families but only the numbers.