Oireachtas Joint and Select Committees

Tuesday, 25 October 2022

Joint Oireachtas Committee on Autism

Autism Policy: Discussion (Resumed)

Ms Miriam Kenny:

We surveyed a core group of our parents recently to give them a parental voice today because there are only two of us here. One of the questions we put was if they had any suggestions on how the NCSE could do a better job. As a parent, the experience with the NCSE has not been one of receiving timely answers or support. One must look at the job description for a SENO and the reality of what is being executed. You can say it is because of funding and the NCSE will get extra funding and on the ground maybe people are overwhelmed, which has to be taken on board, but from our point of view you are left to your own devices. Nobody we have encountered in our group had much support from a SENO, if any. I am the local unpaid SENO and I have managed, quite successfully, to help people to get classes because I work in education so I understand that.

A lot of the time we know what is happening in the area when a SENO does not know. I will give an example of that. I was outside of my son's school and one child was looking for an autism class and their parents did not realise that one of the local schools down the road was opening a class. Why is that? My understanding of the SENO process is that the SENO is allocated to the school and not the child. Nobody is following the lifetime or pathway of the child from an educational perspective and that is concerning to me. It is pot luck as to who gives you that information. Our experience has been that there is no up-to-date information from the NCSE. We know a lot about data etc. and we have put that in place ourselves in our campaign but there is no live system for parents to see where there is a place and to determine what they will do.

One of the other critical things is that parents are applying and each time they are putting in their psychological reports and all their data. One must think about the general data protection regulation, GDPR, issues around that and the language that goes with it. There is no streamlined process. We have asked for that and I cannot see why we cannot start looking at a streamlined process for applications that reduces distress and allows people to know where the places will be. We must support the schools in doing that. It is about supporting the schools to be able to open classes but our parents do not have up-to-date information and I provide a lot of support locally because I happen to work in education.