Monday, 29 March 2021
Reports on Department of Health Policy in RTÉ Investigates Programme: Statements
I thank the Minister of State for coming in today. Unfortunately, she has been handed another poisoned chalice.It is a very serious matter. I speak on behalf of people who have worked with children with autism and the parents of children with autism. I want to be a voice for them today. I reached out to them after the event and they reached out to me. The average person affected by this has a series of questions and would like to find out the following. How do families establish whether there is a dossier on them and their children? Will the Department contact the affected families directly? How do they access the dossiers? Can a step-by-step approach be provided? What are the proposed lines of inquiry into why this has happened? Who requested sign-off on this? What are the proposed actions?
There is a request for an independent inquiry as it is not ideal for Departments to investigate themselves. It would be useful if a help desk or helpline was set up for parents to work through the actuality of the dossiers. Last night I tried, with a parent, to go through the HSE website on this and we could not find anything. The website just stated that there would be information available. We want to make it as easy as possible for these people, who have been really traumatised by what has happened. Can we ensure that this culture, which lacks both accountability and transparency, is addressed with both a top-down and bottom-up approach to the inquiry? Can the greater picture of lack of appropriate service provision for children and adults with disabilities, which I have spoken about umpteen times in this Chamber, be addressed across the lifespan of an individual? Can it be addressed meaningfully, thereby preventing this from happening again? We need to break the mould.
It sometimes appears that the HSE deals with files rather than humans. This issue affects people individually. It is heartbreaking that not only does a family have the challenge of dealing with somebody with a disability, whatever it is, but often seems to have the extra burden of launching its own individual campaign to fight for the rights of their child. It has to stop. The Minister of State could be the one to break the mould on this. She will have to try her best and I will support her in any way I can. I am sure she will agree it is not fair and it is wrong. We need to do better and I am sure the House will be behind her on that support.
Everything seems to be a battle. I have a friend who used to drive to Galway just so his child could attend a pre-school for autistic children. We do not have enough people trained in anything to do with any of these disabilities either. That is a huge issue. Training on autism cannot just be a two-hour, box-ticking exercise. We do not have enough pre-school teachers, qualified teachers or carers qualified to deal with people with disabilities. Often, a patronising service is provided even if it is not meant to be so. Even with the best will in the world, if carers are not properly trained, it is hard to get it right. People need and want their individual child's needs met. They want the child to be the focus of what he or she needs, not some file. They are not files, they are humans.