Ms Linda Whitmarsh:

I thank Senator O'Loughlin for her question and empathy. When you have a child with additional needs, all you have is hope there will be improvement and that services will get better. Every parent in the country is in despair about the way progressing disability services, PDS, is at present, because it is not getting any better. We hear the forgotten voices of children. No one seems to be getting the required and deserved services. We had a meeting with two Ministers during the week. There is still much to be done. Much good work has started and will continue. Staffing and recruitment are the main issues we need to address. There were 10,000 preliminary team assessment, PTA, assessments of needs. This information was given to us by a Minister. Only 54% of these people are receiving intervention, which comes to 5,400. That seems great, but 4,600 are not receiving intervention. There will be further issues with the illegal assessments of needs.

Following our meeting, a key issue seems to be that there is a lot of shock among the Ministers and everyone else. The stories being told are not what it is actually going on in reality. There is a bit of a blame game between the HSE and Government, saying it is not in their area. These children are not just figures. We should not just say we will see what happens and that we will wait to see how it goes. They need therapy and intervention now. My child should have got his intervention when he was three. He was refused early intervention six or seven times even though people say early intervention is key. There is no early intervention in our area.

Article 25(c) of the UN Convention on the Rights of Persons with Disabilities states there is an onus to "Provide these health services as close as possible to people’s own communities, including in rural areas". You cannot get any more rural than where we are. Families in an area close to us have to drive 40 or 50 minutes to another area. Some might not have cars and they have to go to a different county. There is no support or community hubs for them, which is against the protocol. It is so unfair that these parents have to go out. They do not meet people. The children's disability network teams in any area we have been in are empty. There are no children there. We were there for a session yesterday and our child was the only child in the building. The sessions are fantastic. Yesterday was my second session. I learned a lot in the session, including where to go. When a child is non-speaking, you have to research everything. There is the stress of wondering whether I am doing the right thing for him. Only getting intervention after screaming and shouting is not sufficient. We should not have to go public with our stories. This should just be an entitlement for these voiceless, forgotten children of our country who need it.