Monday, 29 March 2021
Reports on Department of Health Policy in RTÉ Investigates Programme: Statements
Before I came to the House to speak, I was thankful knowing the statements were taking place but it made me a bit nervous. I am quite anxious speaking today and quite nervous as the mother of a child with autism. This issue had an impact in our home last week even though we did not have to go to the courts. Not only is there a collective solidarity, a collective and shared understanding of how difficult life can be when accessing services and support, but there is also the shame and guilt one carries as a mother sometimes because one may not have noticed red flags soon enough, one may have thought something different was wrong and may not have known, or waited too long before asking for help. The shame this brings had an impact. I think of kids who had diagnoses and their parents who wanted to correct those rights and correct what was taken away or was absent in their daily lives.
Not wanting to repeat the issue of lack of consent the State had in respect of those dossiers and information being given, before I came in to speak, I asked my daughter for her full consent to speak in a personal manner on behalf of her and the community to which she belongs. When we first got a diagnosis, Jordanne was 16 years old. Before that we were not really sure and I did not understand. If anything, as a mother I probably made things worse for her in demanding she get out of bed, asking her what was wrong and saying there is something wrong. There was an emotional overload. The idea that a meltdown on video was shared rattled us most last week, because I am a mother who has had to lie on her daughter to act as a security blanket to weight her down to make her feel safe. I am a mother who had to search the mountains when the sensory and emotional overload of a day became too much for her, to the point that I actually rang Deputy Seán Crowe whether there was a mountain rescue he could contact in the county council because I was at a reservoir where I could not find her and it was becoming dark.It is the fear, the desperation. When you go through all those things and start to finally realise perhaps there is something else here, you will go and ask for help, sit in a waiting room - you have probably waited after three trips to the accident and emergency department and two years on a waiting list - and say to your child, "Whatever it is, tell them everything, even if it makes me look bad and our home look bad so that you can get to the bottom of what is going on, how you feel, who you are, what you experience and why you are struggling day to day with life, emotions or senses, and trust them." You tell your child that and you encourage your child in that way. Then you also inform your child that, as somebody who has worked in the addiction and community sector for so long, you know that confidentiality is key to that profession, that your child will have the full confidence of that profession, the only time that it will break that confidence is if your child is going to murder someone or take his or her own life, or if your child is being neglected or abused. Beyond that, what happens in that room between your child and that medical profession is between your child and that medical profession.
I have spent years trying to get my own friends, who have already felt disenfranchised by the State for many different reasons, to trust in the services and to trust in the State, and stating that it will happen. I have had to drive parents. Since I became a Senator, I am conscious of the capital that opens up for one in terms of knowing someone who is a consultant or knowing someone who understands autism. I have friends who are waiting years for diagnosis where I have got them, I have put them in the car with their child and I have driven them to my friends to give them some temporary advice on how to navigate the system, how to get occupational therapy and how to get speech therapy, and I am struck by the fact that when you do not manage to have all those needs met, you go to court and the very thing that you told your child to do, and you have to do, which is tell them everything, is then used against you. Senator Sherlock is correct about the far right, conspiracies and all of that. It is so hard to get people to believe in the institutions that they use. Then, when that stuff comes out, how do you go back and say that a person should still trust in them, still ask for that appointment and still talk to that doctor? It is so difficult.
We can talk about it being lawful, but there is something very wrong when so many people do not question something that is happening. That is power. I do not know if the Minister of State ever heard of control theory. Either one has not enough power or one has too much power. At both ends, one is breaking boundaries. One has so much power one does not even realise that one is violating someone's rights.
Senator Conway mentioned about a state protecting its assets and I sat there thinking my daughter is the State's asset. These children are the State's asset. The schools are the State's asset. We need to shift away from assets being some sort of economic output or reputation, admit when we have got it wrong and change it, and forget about protecting ourselves because that will keep the distance between those who need help and those who have the power to provide it. We must acknowledge that we need to lessen that gap and build that trust.
I am shaking even thinking about it. My daughter, when she saw all this flash up last week, texted me asking was all her stuff involved, and I said, "No, we did not go to court." That was the bit of advice I could give her, that her files are okay because we did not go to court. God forbid we had to, had it got to that point.
I agree with Sinn Féin. We need to have an independent review into this because it is a violation of people's rights. It needs to be independent and it cannot be carried out by the Department of Health. When so many people have got it wrong for so long - the medical profession is the one that bothers me the most in all of this - there is something wrong with our institutions. If we go this long without somebody saying this is wrong, we need to change this.