Rose Conway-Walsh (Mayo, Sinn Fein) | Oireachtas source

I thank all the contributors. I am a long-time admirer of all of the work done by AsIAm, Down Syndrome Ireland, Inclusion Ireland and the Ombudsman for Children's office. I have a particular interest in autism.

A child who was born when the EPSEN Act came into force will be 17 years of age now. My God, that is an absolute disgrace. That really speaks for itself and to the fact that we have an enormous problem. Will we be dealing with the same situation 17 years from today? That is what we face as a committee.

It is very clear that there is an enormous implementation deficit. I understood Mr. Harris when he spoke of the need for us to conduct a legislative review and implement a human rights roadmap.

Ms Dempsey mentioned education. Inclusion starts with the education and in

That the legislation must go hand in hand with the cultural change was mentioned also. That is not a major request and it should not be something that should be added on to this.

I have a number of questions. First, I ask all the representatives why they think the EPSEN Act has not been implemented and why did it take 12 years for an autistic person to be on the National Council for Special Education? We must examine the why in all of these things to see where the blocks and the barriers are. I also wish to ask about the interface between Departments because that is where the biggest issues I have come across are. Who, therefore, is accountable and who has overall responsibility? Who is going to ensure the Departments and the different areas of responsibility come together to put the child and the family at the centre of what is being done? Obviously we all welcome that €2 billion has been allocated. There are 1,423 new staff for educational needs this year. My fear is that Government after Government is almost throwing money at this. How are we measuring the outcomes there? How are we ensuring the money goes to the right place? In the case of a lot of these issues, there is a whole industry set up around them without ever involving the people directly affected. While I believe there is talk of €5 million being spent in recent years on legal cases, that is the tiniest tip of the iceberg. Most families cannot do that because first of all, they are in fear, and we must remember that. Many families and people who are directly impacted are in fear of losing what they already have and most families cannot afford to take on the might of the State financially as well.

I have a specific question for Dr. Muldoon. I refer to families or individuals who want to find out information held on them by various Departments, whether there is a legal case or not. Does, say, an autistic person have a right to get his or her file without it being redacted? I have several other questions but I want to hear from the witnesses.