Oireachtas Joint and Select Committees

Tuesday, 12 July 2022

Joint Oireachtas Committee on Autism

Autism Policy: Discussion

Mr. Adam Harris:

I thank the Deputy for her questions. We work with many groups around the country. We have recently finished the bridge forward programme with Cavan Autism Parents Support Group, a very good group in the Deputy's constituency. The committee can look to international examples of training which would make a big difference. Legislation recently passed in Westminster will now mandate all NHS staff in the UK to have autism training. That arose from a tragic incident in the UK in which an autistic person was misdiagnosed and did not receive the treatment they needed because there was not an understanding of some of the communication differences. This training saves lives and is critical.

A few years ago, Northern Ireland had an initiative using lottery funding to allow every member of the PSNI to access training. Mandatory training is critical. Training that is bespoke to specific industries is needed.

In Ireland we are not always good at talking about these things and if it is in any way uncomfortable, we shy away from it. We have seen that with many social issues. We have moved people into mainstream schools and now 86% of autistic people attend mainstream schools. We have done it in a very Irish way in that we have not really talked about it. Sitting in classes throughout the country are autistic people whose peers really do not understand. We need to have very targeted awareness campaigns across the educational system. Young people get this when they are given the information they need. It goes beyond just the positive openness to it, which young people have already, but they need the tools to show them how they can make a friend and how they can help somebody if they become overwhelmed. I would like to see awareness campaigns for the general population and also targeted mandatory training particularly for public services.

Regarding education, we have had very good engagement in recent weeks with the new CEO of the NCSE and he has undertaken to meet our organisation once a month in future. This will allow us to keep him informed of trends on the ground which will be helpful. There seems to be a disconnect between the spirit of the role of a SENO envisaged in the Education for Persons with Special Educational Needs Act and what it is in practice. For many families it can feel like a purely bureaucratic task as opposed to actually someone who is holding the child's hand and working with the family.

We need more SENOs in the NCSE. There has actually been a reduction since its establishment and the need has grown enormously. I would like to see a streamlining of the process to support families. There is nothing more soul-destroying than having to apply to 20 different schools, sometimes even when it is clear there will not be place in one at the time parents are given the list by the NCSE. Some streamlining needs to be done urgently. Linked to that, if a child accepts a place that turns out not to be appropriate, the child should remain on the NCSE's books. Many children take their mainstream class place and then drop off the system. Often they are the children for whom the school placement does not work or begins to breakdown.

The issue of CDNTs can be incredibly frustrating for families. It does not seem to be working properly anywhere in the country. To improve access to therapies, we need to return to the Disability Act. We saw how quickly the change to assessment of needs came in once the High Court ruled. As a result, we also need to move to therapies being rights based and not just grace in favour.

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