Jillian van Turnhout (Independent) | Oireachtas source

I thank the deputation for the presentations. Professor McCarron has reiterated the importance of having this study and of having the data. We can see the richness of our understanding. I hope we will evolve as we appreciate and understand more about what the data are telling us. It speaks to what many of us felt in our guts but we did not have the evidence to actually demonstrate it. As the deputation was presenting this morning, the question of whether we look beyond intellectual disability struck me.

Sometimes I feel that if the diagnosis is intellectual disability, the box is ticked as far as the health plan is concerned and we do not look beyond that. Certainly, that is the evidence. Another thought struck me when I was listening. We tend to feel that it is great that people are living longer, rather than actually stating what our expectation should be. We are almost applauding ourselves when we look at the figures, but it probably speaks volumes about what we did in the past.

Eilish Burke gave a very good illustration of how to make health promotion more accessible and how we might do things differently and recalibrate. Mary McCarron spoke about creating a space or to make room, parallel with the settings we have, in clinics and in other places to ensure that we make it accessible. The issue of literacy and how we view literacy is extremely important. Pat Clarke from Down Syndrome Ireland is in the Visitors Gallery. During the children's referendum that group produced a leaflet to explain the children's referendum to its members. In fact, I found it useful for a much wider audience than just the group's members. Have the witnesses found evidence of engagement with advocacy or membership organisations in designing or providing those community settings or on how we are going to do this? We are getting some of the figures, but how do we create these models? How do we really understand what is best? Perhaps we should talk to parents, support groups and advocacy organisations.

I have a question about the figures on dementia. How is that in the context of the general population? As Senator Crown asked, is it our growing understanding or is it about how we diagnose generally? I am trying to understand the increase in dementia. Is it that we are now looking beyond the intellectual disability?

In the research that has been done have the witnesses found any issues regarding disclosure of abuse emerging later in life? It is certainly something we have seen with the older population when we look at nursing home care. The evidence we have been given is that when people are in a safe setting they tend to disclose if there has been domestic violence or childhood abuse, due to being in that safer environment. Nursing homes have pluses and minuses but sometimes when one is changing that context a person can feel the ability to speak out. Is that something that has emerged?

I agree about the quality and resourcing of supports to families. I am concerned about the CARDI report and the living arrangements for older people with intellectual disabilities. It shows a total redesign is needed of how we provide community supports. We allow people to live where is best for them, but the reality is that most people are living in residential centres so we cannot ignore that fact either.