Tom Clonan (Independent) | Oireachtas source

Let us not deflect from the core issue. What about the tens of thousands people who are coming through? I refer to people like my nephew, Donagh, who has Down's syndrome and lives in Dundrum. There is nothing for him. There is nothing for my son. There is nothing for the hundreds of people who have contacted me and because of the statistical analysis, there are many thousands of people. Is Dr. Tamming not alarmed? It is a slow moving human catastrophe. When our children and historians discuss this in ten, 15 or 20 years' time they will ask people like me what did they about it, when did they know about it and what did they do.

I have raised this issue and know that the authority it not responsible for it but Dr. Tamming knows that the HSE is not doing what it says on the tin and neither are the other agencies. We have a completely and utterly dysfunctional system. There should be no section 38 and 39 organisations. There should be a level playing field. The State should live up to its commitments under the Constitution and European law to ensure that all citizens, and all children, have the right to participate fully in this Republic. It is so wrong to have people with scoliosis left for seven or ten years, which is what happened to my son. In fact, he had reached the point where he was so twisted over that his head almost touched his arm. It is so wrong to do that to a child. Yet we have another stay, another report and another inquiry but no haste and nobody doing their utmost to solve the situation.

My take on all of this issue, having been a member of this committee and having listened to all the witnesses who have come in here, there seems to be a disconnect between the institutional, bureaucratic and organisational processes and the reality on the ground. The reality on the ground is brutal. When George Bush began to dismantle whatever public health system they have in the United States, he was asked what was his health policy and he said, "don't get sick."

I am telling Irish citizens that if they have a disability, if they get sick or if they are elderly in the emergency department, you are in big trouble. The World Health Organization tells us that every single citizen will experience a period of disability in their life, probably as we get older. The average is eight to ten years. It is in all of our interests to solve this. It requires intellectual honesty at all levels. I am saying it like it is, through lived experience. I cannot understand why that imperative, dynamic and that immediacy is not there. I do not hear it from the organisations, institutions and service providers that come in here. I just do not hear it. I hear the language, the calm calculus of reason and the attempt to reconcile chaos into some sort of narrative that can be controlled. However, the reality on the ground is that if you have a disability, there is nothing there for you. There are no therapies, no physio and no speech therapy. There is nothing. Within the therapeutic window there are thousands of children who are not being treated, not being supported and their lives are being irreversibly damaged. It is having life limiting and life altering consequences for them. There is also the impact on families. Can you imagine the impact it has on a parent to watch a child deteriorate? For the past ten years, every time I bring my son to a therapist, all they can do is measure his deterioration. We are a republic in the European Union. This does not happen in other jurisdictions in the European Union. They have ambition. They have a desire to actually deal with this. Is it because there is a belief in Ireland that this is the responsibility of the family, or that it is a burden that should be borne by women? I do not know but we have to do our utmost to deal with this, whether that is by supporting legislation that would oblige the service providers and the HSE to do what is needed. The Minister of State, Deputy Rabbitte, walked out of a meeting the other night because of her sheer frustration at the HSE refusing to comply. I have been in meetings with the Minister of State, and I know she will not mind me saying it, where I have seen disability service managers tell her, "I am not doing that, Minister." She has closed the call and looked at me and asked if she was challenged.

At the same time, the Cabinet gives an instruction to kill legislation that would legally oblige them to do their job. I apologise to the Chair, as I have gone on too long. I know I am exercised, because I get this every day. I do not hear from Trinity graduates. I do not hear from them at all. I hear from hundreds, at this stage thousands of people in absolute crisis, because I have been here for 16 or 17 months. Every day I hear from them. What can you say?