Oireachtas Joint and Select Committees

Tuesday, 8 November 2022

Joint Oireachtas Committee on Autism

Autism Policy: Discussion (Resumed)

Photo of Ruairi Ó MurchúRuairi Ó Murchú (Louth, Sinn Fein)
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As per normal, if I just did not press anything, this would work much easier. I would like to thank Ms Archbold, Ms Murphy, Mr. Darmody and particularly, Ms Darmody, who laid it out absolutely starkly in relation to her family and brothers, Neil and John. I had to ask a question in the transport committee that came up at the previous meeting, but after Ms Darmody spoke, I was absolutely frightened to walk out in case she decided I was not giving enough attention.

In fairness, what all the guests have said is absolutely stark. I get what Ms Darmody said that nobody wants nice words on their own because they are good for nothing. We all accept that. If we talk about adult services, we are all aware they are non-existent. That is where we are on that, including even people with autism and presenting in a milder way. I am not entirely sure of everyone’s notion of "mild". I would often talk about our Turlough having moments. Those moments are something to be witnessed, but I probably undersell it. That is not to put Turlough necessarily in the same bracket as some of the children who are being spoken of here.

When we are talking about the means test and dealing with the realities, we all get it and have all said at times that this State could not afford or deal with the service that our guests provide. What if all of the sudden they decided to shut up shop - not that they would - and every child was left at an accident and emergency department in the morning? It is phenomenal. On that basis, and Mr. Darmody said it, one can see the reality of how some of this happened. The fact is looking at what a carer does as a welfare payment, for example, obviously does not make sense in the sense that this is someone who is doing the State a serious service. That has to be recognised and looked at holistically. There is no point in just looking at individual payments or added payments for fuel or anything. It is that general notion. He got that idea across as well of people in absolute fear of filling out a form that they will lose what they got. Again, no level of acceptance of the service that they are providing, not only to their children, but to wider society is enough. We just need to lay that out absolutely starkly.

In fairness, Mr. Darmody spoke about the whole idea of oversight of the HSE, which is absolutely necessary. However, the problem is we are starting in a place with the HSE where there has been a lack of planning and we do not have the capacity to offer the services that should be offered. We all know all the positions that are not there. I am not sure that the planning is in place to try to improve that as much as needs to be done. That is one thing.

In fairness, I will just go back to the fact that it has absolutely come back to the guests to put stuff in writing in relation to answers that they got across the phone and whatever. We can all accept that the Darmody family has been absolutely failed and it is utterly disgraceful. I am not always into confrontational politics because sometimes it can be easy, but it can be pointless. However, we are dealing with many a failure here. My biggest difficulty is I am not sure that we have set in train to deal with that. If we do not have the capacity to offer the service, we at least need to be able to be straight with people on what can be offered and dealt with. We then have the conversation of how we cut cloth to measure and how we then deliver capacity, which is the thing that is not happening across the board.

On some level, I will just throw it open for commentary from the guests. We are all in agreement that the service is not there and the capacity is not in the service. Along with that, our guests cannot get a straight answer from it. I think we all agree that we have to look at the means by which we support those who are involved in family care who we could not in any way survive without.