Ms Helen Holmes:

I thank the Senator for her questions. She asked about us being steered away from direct therapies but I can just speak from my experience. The progressing disability services model is family centred and it is about empowering parents. It is a needs-based process and a parent attends to discuss different issues a child is having. We are absolutely steered away from requesting any occupational therapy or speech and language intervention directly. I know this because I made a request and was told direct therapies and intervention will only be given if they are part of the family service plan. To have it in the plan, there must be agreement with a key worker, which in my case is a senior psychologist. We have to try to fight our case to get any kind of therapies. We and other parents in the area have not been able to get those therapies yet.

My son is autistic with pathological demand avoidance. He is now seven and half years old and was diagnosed at two and a half years. In five years, we got one block of floor time.

That includes a speech and language therapist and occupational therapist who got work just before the Covid pandemic. I could see a significant difference in him following those therapies. There was a difference for us because I could come back from those sessions knowing what the therapists had demonstrated would work in different scenarios. I could bring that back into the home and work with it. The other witnesses have gone through the data.

It would be nearly impossible for the current staff to see every child that needs to be seen. The issue is not having parents sitting there and perhaps going on parent courses. Each child is different and unique. We are fighting for the therapist to show us what to do and to empower us. There is no problem with bringing that into the home or the school. We need the experts who went to college for four years or more to help us as parents and to enable us to help our own children.

We did a survey of 25 families in the area. A family member sent us a letter the family received from the children's disability network team this week in respect of the little boy I spoke about earlier. He is three and a half years old and is non-speaking. The team will see him when he is six. That is open-ended. It is a generic approach we are used to. We are given periods of years and told teams will see children in 2024 or 2025, but there are never specific dates. As parents, we know that date will go further back. It goes back to asking what parents can do to help their children. Private therapy is so expensive as it is, but it is an absolute luxury to be able to get onto a waiting list. People on the list are afraid to give up their place. Parents say they are doing a block, that it is costing a certain amount and that they are terrified to lose the spot, because then they will have absolutely nothing. There is a significant impact on people waiting for services.

Dublin 12 is split into two areas. One person who contacted me did not know which children's disability network team area she would be in. I got her the two numbers and said she would have to call them, since it is based on the area she lived in. As a result, things moved a little quicker for her because there was shock about a child having slipped through the cracks.

A survey was recently published about special schools and July provision. There are 126 special schools in Ireland. Only 26 provide July provision. My son, Adam, attends a mainstream school with support from special needs assistants. I am told the teachers and special needs assistants, SNAs, have their own families and they do not want or need to do this July provision. The main issues are that there are no incentives for staff and that teachers and SNAs received payments late in the past. They had to go through hoops, submitting all the forms to get their money. There is not enough incentive for them to do it. People are left to find their own tutors. Everything we speak about with regard to therapies and tutors falls back onto families, who have to deal with a lot of stress and pressure as it is, but they want to see their children succeed, so they do what they have to.