Ms Margaret Lowndes:

I thank the committee for the invite. I am the chairperson of the D12 autism parent support group and the D12 Campaign 4 Autism Inclusion. I am also a mammy to two autistic boys, one of whom also has a lot of comorbid conditions. I thank our vice chair, who could not be here today but who contributed to the drafting of this statement.

We set up our organisation in 2018 due to the frustration of parents regarding the lack of school places, supports and therapies. The Government is failing the autistic children of Ireland. It is neglecting their needs and those of their families. When I was here in September, services for our children were bad, but the position in Dublin 12 has become even worse. We have two CDNTs that cover the area. From the beginning, neither has been fully staffed. There is not one full multidisciplinary team. Neither CDNT in CHO 7 is providing services and when they do provide some therapy, usually in a group, the quality is below par. One CDNT cannot keep its staff and has constant absences. When will senior management step in? When will the Government hold the HSE to account for the failings of these two CDNTs? One is collapsing and if the door shuts, where will all these children go?

Parents are expected to be speech and language therapists, occupational therapists, psychologists and much more. We want to be parents to our children and not service providers due to the HSE overpromising and under-delivering disability services for our children. Parents are in distress watching their children regress. Parents are being pitted against each other in the HSE lottery for CDNT services. We jump through hoops in order to have basic human rights provided. Our special school, which we fought hard to get, has no therapists on site to work with our most vulnerable children. The CDNTs are to provide therapists but they cannot even provide for the hundreds in their case loads. Our special school is left with the school inclusion model, which does not provide one-to-one therapy. We need to support our teachers and SNAs and not give them the extra work that the HSE should be covering.

In our area, autism classes have grown and continue to grow due to the continued pressure from our campaign. The NCSE's motto is to send parents of children in need of a class to us. Why is this still happening? All schools across Ireland need autism classes, and the need in Dublin 12 is huge. It has an ever-growing population. Homes are constantly being built. The NCSE has to look at schools that do not have autism classes as many autistic children in mainstream schools need them and need access to support their learning. The NCSE must stop using this as an excuse to not talk with schools. What exactly does the NCSE do? We need a clear answer on exactly what it does, how it spends its money and how it is going to provide for our children. Parents get their information from the wonderful support groups around the country because the NCSE does not support families. Where is its database? We have asked numerous times for it. Why does it not have one? It still does not know what child is on tuition or in preschool or what child needs a primary and secondary school place. The NCSE is another entity that has failed our children.

Autistic children in mainstream schools are often forgotten when it comes to supports. They receive little or no SNA access and schools have to fight for SNA reviews. Why does everything take so long? Set hours are reduced when a teacher is needed. Movement breaks are lost. Many are falling through the cracks because schools are not supported enough by the Department of Education and the HSE.

Let us be clear: the system relating to health and education is broken. Political power needs to hold Departments to account for not doing their jobs. Most of all, we need action. There is too much talk and patting each other on the back but no real meaningful change for our beautiful children. We hope this committee can make the difference and we are asking it to step up to the mark.