Tom Clonan (Independent) | Oireachtas source

The Minister of State is welcome to the House and I congratulate her on her appointment to this important portfolio. According to the World Health Organization, everybody in this room, everybody outside and everybody in the world will have a disability for an average of between eight and ten years of their lifespan. For most of us, it comes at the end of life. Unfortunately for disabled citizens in Ireland, particularly children, teenagers and young adults, their rights are routinely and cruelly not vindicated. This is the situation that the Minister of State has inherited.

As a family, we have been living with disability and the experience of having a disabled adult son for 21 years. Since the austerity measures following the financial crash, the circumstances of disabled citizens have deteriorated by every measure over the past 15 years or so. One in four of our homeless citizens is disabled. People with disabilities suffer from social isolation, loneliness, suboptimal medical outcomes and a lack of therapies and interventions. The Minister of State knows as well as the rest of us that thousands of children cannot get an assessment of need. Even if they can, it is just a piece of paper. Those assessments might as well be photocopied because the therapies or supports that are set out as required for disabled children will not be available.

Ireland is an outlier in the European Union in respect of disabilities. We are the only jurisdiction in the European Union where disabled citizens do not have the legal right to therapies, supports, surgical interventions and personal assistant supports. We have a polity here that is, I am sorry to say, pathologically ableist. That was writ large last year during the care referendum when the Government and all the political parties with the exception of one campaigned on a "Yes" vote that would give constitutional expression to the idea that the family is the exclusive and primary responsible agent for the care of disabled citizens. That is the opposite of a rights-based approach. It is the opposite of the principles and concepts set out in the United Nations Convention on the Rights of Persons with Disabilities. Everybody, from the Taoiseach to the Attorney General, advocated and campaigned hard for a wording that would have set back the rights of disabled citizens in this country by decades. It also would have set back the rights of women. Some 99% of unpaid carers are women and girls. My daughter, at 16, was toileting her 18-year-old brother as a result of the lack of personal assistant support and interventions. On the subject of respite, we have had no respite in 23 years. The experience of disability in Ireland is, I am sorry to say, a negative one, and unnecessarily so.

That brings me to the publication today of the HIQA report into governance issues at Children's Health Ireland, CHI, on the use of implantable medical devices. This is a dark day for the Republic. We have hundreds of children who are waiting for scoliosis surgery and who have been allowed to deteriorate to a point that is not seen in other jurisdictions. I previously raised the case of Mikey Henry from Ballina. He has a scoliotic curve of 102°. Little Daniel Collins in Kerry has a scoliotic curve of over 90°. That is a right angle. Imagine allowing a spine to deteriorate to that extent. Before Christmas, in advance of the publication of this report, I spoke to paediatric spinal surgeons from Phoenix, Arizona. They were here at a conference and reviewed the case histories of children on the scoliosis waiting lists. They have never seen children deteriorate to that extent. They told me that if we were to put the hundreds of children on our scoliosis waiting lists onto an Airbus to Boston, Vancouver or the UK, there would be an international medical incident and scandal. They would ask what country would allow children to deteriorate to this extent. The reason is that those children do not have the right to these supports and interventions. The report on CHI shows that the people who come last in the list of concerns of the institutions and organisations that are charged by the State to look after disabled citizens are disabled children and their families.

Since the publication of the report, I have had contact from dozens of families who are completely in the dark. Aside from the three children who are mentioned in this report, within whom devices were implanted, there are at least 27 other cases. Nobody knows if their child is one of those others or not. They are not being consulted. The families want a full public inquiry. I read the report with great interest, albeit I am speed reading it today. I must say that there is a big difference between the newspaper headlines on the substance of this report and its actual content.There is a tendency within the media to blame maybe one individual, but this is a systemic whole-of-organisation problem. I have no confidence whatsoever in the executive leadership team or the board of Children's Health Ireland. The report is very clear on that stating that in a fast moving environment where there is change and where it is dynamic, they have failed completely in their governance, oversight, clinical decisions, management of theatre and the procurement and decontamination process. How can we allow that executive leadership team and the board to oversee the transition to the new premises? That will create an even bigger risk incident with the children who are being dealt at paediatric services in Tallaght, Connolly, Temple Street and Crumlin hospitals. I hope the Minister of State can communicate that to her colleagues at Cabinet.

Ireland is a country where we do not have a rights-based approach. Within the lifetime of this Government, I hope the Minister of State can assist me. During the previous Government, I brought a disability rights Bill to the Final Stage that would rectify that situation for disabled citizens and give them the legal right to treatments, therapies and supports that they would enjoy in other jurisdictions. It is coming to its Final Stage on 2 July 2025 when I have a Private Members' business slot. I hope the Minister of State can support me on that. her predecessor said that the Government would support the Final Stage of the Bill. I hope if I can speak to her and the Minister, Deputy Foley, that perhaps they might introduce it in the Dáil, progress it there and enact it. That would remedy most of the problems that disabled citizens are confronted with and that all of us in due course will.

During the three years of my tenure, I have also drafted a much more complex Bill on personalised budgets. I have restored both Bills to the Order Paper. For this Bill, luckily, I was given the support and assistance of one of the largest corporate law firms in the country and internationally, Maples Group. As part of their corporate social responsibility, they provided me with the services of a legal team for two years. They examined every aspect of Government policy and every Bill, up to and including the report that former Ministers, Senator Rabbitte and Deputy O'Gorman launched in December 2023, all the consultations with disabled persons organisations, as well as service providers and all the best practice legislation in other jurisdictions. They have come up with a solution for the personalised budgets problem here. Luckily, in the previous Seanad, 27 Senators from all parties - Fine Gael, Fianna Fáil, Green Party, Labour, Sinn Féin - cosigned the Bill. I am hoping that now it is restored to the Order Paper to begin to progress that and of course, I welcome amendments from Government. This is actually a solution. A total of 72% of the budget goes to service providers whereas 72% of the budget should go to disabled citizens themselves to give them the autonomy to live their lives to their fullest potential and to self-actualise and participate in the social, economic and cultural life of the State.

I hope we can work together to progress these matters. The situation is bleak for disabled citizens, but I want to be solutions focused and I have solutions in the legislation that I have drafted. Unlike other jurisdiction, we are not a very polarised Parliament and hopefully we can work together constructively to progress these matters. I wish the Minister of State the very best of luck in her portfolio.