Tom Clonan (Independent) | Oireachtas source

It is cynical. It is hypocritical. You know what? It is consistent. I say this because Eoghan has been on a waiting list for years. Tens of thousands of children and young adults have been on waiting lists. What the Government is doing with this Bill is putting it on a waiting list. If nothing, the Government is consistent. I therefore ask in relation to that amendment that we have a free vote and for the whip to not be applied, so that people can vote with their consciences. I sit on the disability matters committee, as well as the children's committee, with great colleagues who know what is happening in the community. On the disability matters committee, members know the children's development network teams, CDNTs, and the progressing disability services, PDS, programme have failed. Last year, there was an on-the-record admission at the Committee on Disability Matters by Paul Reid, the then CEO of the HSE, when he said that yes, it has failed. We all know this. I am asking the Minister of State to support this Bill, not to put it on the waiting list, not to cynically delay it and not to otherwise interfere with what is absolutely essential.

The first part of the legislation, section 1(1)2B simply states, "The provision of the services identified in the assessment report shall be made as soon as practicable after the completion of a service statement but in any event within the period of time ideally required by the person or persons for the provision of the services identified in the assessment report, whichever is the earliest." In other words, this means that we step up to the plate and meet the needs of our disabled citizens. That is all. The fact that this has to even be introduced as a Bill is a shameful reflection of the failure of the State and its agents in relation to disabled citizens like my son. Article 40 of the Constitution guarantees the right of all our citizens to participate fully in all aspects of Irish life in this Republic, including educational, cultural and political aspects.But disabled citizens are refused this participation. Children are allowed to deteriorate to the extent that they have life-limiting and suboptimal outcomes – citizens like my son who had to wait until he was 17 to get the surgery that should have been carried out when he was 12 or 13. That resulted in years of pain and restricted breathing, which has compromised him for life. It was completely unnecessary. He deteriorated to such a point that he became an anaesthetic risk for the operation on his scoliosis, which was serious spinal surgery that lasted for 12 hours, with litres of blood and blood products replaced during that time. Because of the scoliotic curve, his lungs were compressed. His heart was even in a part of the chest cavity where it should not have been. The anaesthetist stayed in the operating theatre and manually extubated him because she felt that if he had gone to intensive care intubated, that he would not have survived. He suffered that, and we suffered as a family and as parents, and it was completely and utterly unnecessary.

Ireland is one of the richest countries in the world, but it has a cultural attitude of contempt for people who are different by way of disability. This Bill provides in the second Part for an amendment to the Equal Status Act whereby we will actually step up to the plate and acknowledge the difference that disability brings and scaffold and support that. It elaborates on the Supreme Court decision of 1996, which talks about reasonable accommodations. It elaborates on that and gives further clarity as to where the obligations on our public institutions, our most powerful institutions, including the public service, lie. It asks and demands that they step up to the plate and vindicate the fundamental human rights of our citizens. Anybody who would oppose this Bill, seek to frustrate its passage through the House, or seek to delay it, would act fully in the face of our most vulnerable citizens. It is the very opposite of what these Houses are for. We all talk about equality, diversity and inclusion. This is a simple Bill to give voice to inclusion and equality and to vindicate the fundamental human rights of our most precious citizens.

In conclusion, before I hand over to Senator Boyhan, I just want to say that no family should have to watch a child deteriorate. No young adult, on the death of a parent, should be consigned to a nursing home. We have plenty of money, but at the moment there are 2,000 young adults inappropriately housed in nursing homes around the country because of the unwillingness and inability of the HSE to put in place proper care packages and support for people to live with dignity, autonomy and independence in their own homes. They are consigned to nursing homes at huge cost to the State, where they are dumped into a kind of archipelago of misery, hidden behind closed doors all over this country. I came here a year ago with the hope of doing something good, tangible and measurable. Here it is. I again ask that there would be a free vote and that no Whip would be imposed on any amendment designed, cynically, to delay, thwart or frustrate this Bill. The Government should not put this Bill on a waiting list. People like my son and the tens of thousands of children and young adults all over Ireland have been on waiting lists for years. Let us do something right. This is something we can do here, and it aligns with the Minister of State's interests. For the Government to delay this or to vote against it is an act of self-harm, apart from the harm it does to our most vulnerable and precious citizens. I ask, prevail upon and implore the Minister of State not to do that.