Tom Clonan
University of Dublin · Independent · Ireland
“It is appalling; you could not make it up. However, as this is a very grave and dark thing, they raised these concerns by way of protected disclosures in February 2025. Here we are, 18 months later, and no action has been properly taken. Those protected disclosures have not been processed about a child safety issue.”
“I thank the Senator. The Adult Safeguarding Strategy Bill that I hope to introduce fills the gap that exists in Irish legislation around adult safeguarding for our elderly citizens and for all of us who at some point in life will need care. This Bill is consistent with what the Government has set out in the programme for Government.”
“They told me one of them was informed of a child sexual assault or the potential for one - even a rape of a child - and under the guidelines, this requires mandatory reporting, so they set about reporting it to An Garda Síochána and Tusla.”
“A woman came into the clinic and expressed concerns - and I am sorry to use this language here - that she had discovered her spouse - her husband - was accessing child pornography images and films through his devices. These are crime scenes. This is the sexual abuse and rape of children.”
“This should be dealt with with energy and urgency, because all this talk about process is not child-centred. It is administration-centred and it is a classic HSE tactic to cover up, deny and delay grave matters. I want to know why this particular manager is pushing back on mandatory reporting of child sexual abuse.”
“I thank the Minister of State for reading out the statement on behalf of the Minister, Deputy MacNeill. None of these remarks are directed personally at the Minister of State, but to be honest, ChatGPT could have written that response. In it, the Minister, Deputy MacNeill says she and the HSE cannot comment on individual cases.”
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“I thank the Minister of State. When a family comes forward like this and identifies themselves, not only can their individual case be discussed, it must be discussed. This is not a reference to the Minister of State, but I saw it employed as a rhetorical device by previous Ministers and, in particular, the HSE, when they say that they cannot comment on individual cases. However, when a family comes forward, not only can they comment, they must comment on individual cases. It happens in rape cases, where survivors give up their anonymity to raise a particular issue. That is what this family is doing. I hope that in future the HSE will not rely on this rhetorical device to add insult to injury, and moral injury, to the distress being experienced by families. The window of opportunity for Mikey is closing.”
“The scandal of the children's hospital is not written in the billions of euro it has cost to build it. The scandal of CHI is written on the spines, and the little lungs and hearts, of hundreds of children, such as Mikey Henry and his mother, Penny. I know the Minister of State will communicate this to the Minister and I have all of the family's contact details. A surgeon who could review Mikey's case will be in Ireland on 31 March. I know from my son's experience that these cases, though complex, can be operated upon. It is within the gift of the State and the Minister to answer this mother's plea for her son. We should not have to do this. For a family, it is like "The Hunger Games". People such as Penny have to come out in public to talk about their son's situation - here we are.”
“He is on oxygen during the day and has to wear a mask at night. I can tell you what it is to hear your child struggle for breath and struggle to speak. Your voice, and being able to speak, is your most powerful instrument, especially for a disabled citizen, and it is being compromised unnecessarily. He has not been seen at Crumlin for seven months and it is no longer communicating with the family. The family has been told by Crumlin that he is now inoperable. In this country, he has become inoperable. For shame. This is preventable, avoidable and unnecessary. This is a waste of a young child's life. I have heard so many people talk about the Netflix series "Adolescence". It has become a major talking point, but this is adolescence in Ireland; young boys and girls are left to deteriorate in this manner.”
“If we lived in another jurisdiction, he would have had surgical intervention on this twist in his spine. That is normal and routine in other jurisdictions. If we lived in the UK, France or Germany, he would have been treated, but he has not been treated. This is not just the story of Mikey Henry, a 16-year-old. It is the story of all the children on the scoliosis waiting list. It is a predictable, preventable condition that requires surgical intervention, but that does not happen here. I spoke to other Senators coming in this morning. The sun is shining. I spoke to Senator Murphy of Sinn Féin. He told me it was 17°C in London yesterday. The trees are in blossom and everything is coming back to life, but a 16-year-old is deteriorating at home in Ballina. Because of the extreme curvature of his spine, he now has type 2 respiratory failure.”
“I thank the Minister of State, Deputy Cummins, for coming in. The Minister for Health, Deputy Carroll MacNeill, approached me yesterday to give her personal apologies to the family this matter relates to because she cannot be here due to her schedule. However, I am glad the Minister of State is taking it because we have worked side by side over recent years in the Seanad, and I know he understands where I am coming from with regard to this Commencement matter. This is the story of Mikey Henry, a 16-year-old boy who lives in Ballina, County Mayo. He has a neurological condition and, unfortunately, he has developed a severe scoliosis of the spine, which is often a secondary consequence of neurological diseases. It has happened to my son. It is an organic, inevitable and predictable consequence of neurological conditions.”
“However, we really have to be intellectually honest, as we were during the financial crash. Matters should be taken out of our hands because we have thoroughly and comprehensively failed our children. Some of the figures mentioned in the amendment, which I acknowledge is well meaning, remind me of the closing scenes of the film “Downfall”, in which the general staff are presented with phantom units and numbers. Such figures and references to strategies and aspirations will not provide one’s child with a place or the therapies and supports he or she needs. I have a final question for the Minister. I am sorry I am over time. The educational therapy support service was launched in September and was supposed to have a pilot project whereby therapists were supposed to have been placed in schools. Is it operational anywhere in the Republic?”
“It is not just the children who are affected; it is their entire families. This ruins relationships. It contaminates the relationships we have with one another and robs parents of their enjoyment of life and their anticipation of the future. With your other children, you do your best for them and hope they will realise their full potential, but when your child has an additional need, you hand him or her over to others. Boy, did they fail us in respect of every aspect of development. I wish the Minister of State the very best of luck in his portfolio. I echo what Senator Tully said in that I know him to be a man of absolute integrity and know he is passionate about the rights of disabled citizens. I know he will do absolutely everything in his power to advance their cause.”
“Considering that the leaving cert cohort every year is about 65,000, it means 5,000 children coming into the system every year will need additional supports. We need to plan for that. On the matter of being able to have a school place, my son could not attend the same school as his siblings. He could not go to school with his brothers and sister. I get correspondence, as we all do, from hundreds of parents who are heartbroken because there is no place for their children or they are being offered a place that is an hour and a half away. How can you go to work when you have a child with no school place? We should think about that. How can you go to work, watch a football match? How can you participate in the cultural, economic or social life of this country with the unbearable anxiety and pain? It is trauma, moral injury and moral distress.”
“I see his fundamental human rights breached and abrogated every day in so many ways. When you hear a diagnosis and discover your child is different, you go, like Alice in Through the Looking-Glass , into a parallel republic that many people do not appreciate exists. I want to comment on a couple of lines in the motion set out by Sinn Féin. It states we should ensure that every child currently without a suitable school place and those due to start or primary secondary school shall have access to a suitable school place within a reasonable distance from their home. Last September, over 130 children had no school place, and I assume they still do not. I do not know what the numbers will be for September 2025, but I imagine they will be similar because, according to the research, about 8.56% of our children will have additional needs.”
“They have been abandoned. We have to approach this coming from that position of intellectual honesty. We are also sorely in breach of the UN Convention on the Rights of Persons with Disabilities, which we fully ratified last October, and we are in breach of the aspirations as set out in Bunreacht na hÉireann when it comes to our children. What makes this cohort of children who are denied these human rights - and I am blue in the face saying this - different from any other cohort of Irish citizens? They have additional needs; they are disabled. Unfortunately, if you are disabled or have additional needs in Ireland, it would appear to be the case that you have less human value in the eyes of the State and of bureaucracy than other citizens. I say that as a father and carer to a beautiful young man who happens to be disabled.”
“Last year, Inclusion Ireland surveyed children with special educational needs and their parents and found that, even among those who had a place, for 45% of them, their needs were not being met. We have to be intellectually honest with ourselves and understand that we are coming from a place of failure. I read Senator Kyne's amendment. We are in breach of the Universal Declaration of Human Rights because our children do not de facto have access to education. Ireland is a developed country. We have a budget surplus. We are a wealthy country. We are also a country that prizes education - the land of saints and scholars, one of the only countries during the Dark Ages in Europe that produced literature, that translated things like the Bible into the vernacular, into Irish. So we are letting down these generations - Gen Z, Gen Alpha.”
“I commend my colleagues in Sinn Féin on tabling this Private Members' motion and welcome the Minister of State to the Chamber. Cuirim fáilte roimhe and I offer my comhghairdeas on his appointment to this very important role. This set of proposals comes within a particular context. At the moment, for example, there are more than 110,000 Irish children awaiting some sort of service, whether that be physiotherapy, occupational therapy, speech therapy or psychological supports. We have 10,000 children waiting on an assessment of need and we have in our community disability network teams 700 vacancies across the country. That probably informs us to a certain extent what kind of a situation parents like Sarah and Darren are entering. As a parent of a disabled adult myself, unmet need has been our experience for over 20 years now.”
“There is a big push and pressure for this idea that we should be ashamed of our neutral status and that our international partners look down on it or are unhappy with it. They are completely and utterly incorrect. The vast majority of these articles are written by people who have never heard a shot fired in anger and who know nothing about what they want to commit our sons, daughters and grandchildren to.”
“I have proposed that we have a free vote here on the decision to send troops overseas or perhaps some sort of qualified majority vote. We cannot house those in Gen Z or Gen Alpha. We have let them down and they are dispossessed. They cannot have the modest ambition of owning or even renting a home. They cannot self-actualise. What are we now doing? We are now prepared to send them overseas to fight. This is an intergenerational betrayal. The issues of our neutrality and the triple lock go far beyond these kinds of pedantic, paternalistic technicalities over who is correct or who is incorrect. It is the major political question of the moment. There have been 48 opinion pieces in 24 days. Do my eyes deceive me?”
“I know because I used to teach that in TUD for more than 20 years. Many of my former students who graduated now work here in the Oireachtas as journalists and political advisers. If it looks like a duck and walks like a duck, it is a duck. We need to be very careful that our neutrality and our neutral status are not framed in the context of the war in Ukraine or Europe's drive to rearm itself. We absolutely must invest in our defence but we cannot allow a situation whereby any future Government by simple majority can send any number of Irish troops to any conflict anywhere in the world. We might trust the current Government, as I do, but what about a future government? There must be some other mechanism if we are going to take out the triple lock.”
“I support my colleagues in opposition on the importance of the triple lock to Ireland's neutral status. Many commentators have said that there is no link between them, which is politically and philosophically incorrect. I did some research before I came into the Chamber. In the past 24 days there have been no fewer than 48 opinion and analysis pieces in our broadsheet newspapers and on our national broadcaster, focusing on Ireland's requirement to, as they say, step up to the plate and become a part of Europe's military defence. There used to be an average of about three or four such opinion pieces a year. I know that because I used to write them as defence and security analyst for The Irish Times for over 15 years. This is an intense public diplomacy and lobbying campaign.”
“That is the only way we are going to be able to compel the HSE, CHI and all the other State agencies to actually do what it says on the tin. I thank the Minister for her patience and forbearance in listening to me, but it is just really important to set out the context.”
“I am absolutely certain from what I know of the former Minister for Health, Deputy Harris, as a man and a citizen that he meant in the utmost good faith what he said eight years ago. He said this would not continue. It is continuing and we need to act. This is not just a national scandal; it is an international medical scandal. We have to stop being outliers. With regard to all of the other legislation I hope to introduce here during the next four to five years, or however long the Administration lasts, we have to move away from a charitable grace and favour ableist approach to disability. We have to move to a fundamental human rights approach. I commend Senator McDowell on drafting this legislation because this is what it does. It confers rights upon disabled children.”
“Senator Craughwell referenced the precedent of the manner in which cystic fibrosis has been ring-fenced and protected as a service. This is good precedent for what we are seeking to achieve with the legislation for scoliosis. The same is needed for urology and for all disability services. The Minister and we as a Legislature can delegate authority to CHI and the HSE. We can delegate authority to them to carry out the functions of the State but we cannot delegate responsibility. We are responsible for what is happening and what has happened to these children. I really hope that what is set out in section 1 of the Bill can be achieved. What happened to my child in 2018 is still happening today, seven years later.”
“I want to make a few points on section 1 of the Bill. We are coming to a point when Temple Street and Crumlin hospitals will migrate to the new national children's hospital. This is a point of great risk. Whoever will manage this will have to be brought in and asked what the risk management and assessment plan is for this. I believe children will suffer in this migration. The scandal of the national children's hospital is not in the €2.2 billion costs. It is not in the euro, the planning, the design, the bricks, the mortar, the windows or the potted plants around the place. The scandal is what is happening to the children on the waiting lists and to those families who are watching their children deteriorate. This is where the scandal lies.”
“In every other medical specialty, higher specialist training is considered the norm in international modern medicine. The HSE is appointing doctors to consultant posts who do not have higher specialist training. This is a scandal. It is a danger to the Irish public. If we got on a flight to London and the pilot said they had not flown one of these Airbuses before but had done 12 hours in a Cessna and would be able to figure it out, we would not be happy. This is what is happening in our medical system with recruitment and retention. Again, this is not the fault of clinicians. The flight of talent from this country is not the fault of clinicians. It is not a lifestyle choice. It is a consequence of the manner in which the HSE and CHI are managed. People who speak out about these risks are subject to retaliation, reprisal and isolation.”
“Are the surgeons being recruited and appointed by CHI actually fully qualified, with higher specialist training in spinal surgery and the necessary specialty training, usually acquired abroad? I do not think so. The reason I say this is because, notwithstanding what Senator Craughwell had to say, at present CHI is unable to provide annual spinal reviews with qualified spinal surgeons. These are for children who have had surgery, are awaiting surgery or are post surgery. They cannot provide them because they do not have the surgeons who are qualified to do so. This raises the eyebrows of the international community. We are outliers in this regard. Again, this is not a situation of the Minister's making, and it is not her fault, but it is something we really need to have a look at.”
“I want to be really clear about that. The spinal surgeons were also very confused. I do not know how the Minister is being briefed but I have listened to representatives of CHI and the HSE at meetings of the various committees. I hope those committees will be re-established as soon as possible. The Minister needs to be really careful as to where she gets her information from. All surgeons require higher specialist training. They acquire surgeon membership and then specialise by doing a surgical fellowship. If you want to be a proper spinal surgeon, you have to do the higher specialist training in spinal surgery. If you want to be a urological paediatric surgeon, you have to do the higher specialist training. This is something the Minister needs to look into if we are to have a proper service.”
“They are all teaching cases because the patients' conditions have become so extreme that they are not seen in the normal medical environment in the United States. These are cases that would not normally be seen in the UK, Germany or Canada. The surgeons told me that the cases matched the profile of those of the disabled children on the Irish waiting list. One of them remarked to me that if you were to fly the 130 children on the spinal surgery waiting list by Airbus or Boeing to Canada, the UK or the US, where there is a centre of excellence, it would be declared an international medical incident and put on the risk register. People would ask what kind of country allows its children to deteriorate to this point, where they have long-lasting, life-limiting and life-altering outcomes – suboptimal outcomes.”
“Just before Christmas, I hosted in Leinster House a number of Irish and international paediatric spinal surgeons who were in Ireland for a conference. The American spinal surgeons, from a centre of excellence in Phoenix, Arizona, told me the situation for children on the Irish waiting list is unheard of in other jurisdictions. The spinal surgeons from Arizona and Texas told me that, as part of their corporate social responsibility or giving back, they sometimes take on charity cases, typically involving people who have come across the border from Mexico. Very often, part of the migration pattern involves people seeking medical treatment in the United States. These are children and young adults who are absolutely in extremis . The surgeons take on these cases on a pro bono basis.”
“Without being too melodramatic or using too much hyperbole, for my family to have been told my son might not make it was unnecessary. It was for want of a service as set out in section 1. My son is now in his final year in college. His speech is poor and we as a family are left wondering whether that is a consequence of his not having had the surgery within the therapeutic window when developing. He is a small little fellow. I look at him sometimes and wonder whether, if we lived in a jurisdiction with proper services, the outlook would be different. His not having been in such a jurisdiction has certainly had life-limiting implications for him. Let me put that into its context for the Minister from our experience, the lived experience of disability.”
“I went up to intensive care at around midnight and the reason my son was so delayed getting out of the operating theatre was that the anaesthetist manually extubated him because she felt that if he had gone into the intensive care unit intubated, as he was, he would not have made it. She waited with him, manually did the compressions and then, manually, very carefully and slowly over a period of hours, extubated him. Let me tell you, the problems in our health services are not the making of clinicians, consultants, registrars or nurses. They firmly reside within the health services' executive management – on their boards, in their executive leadership teams and with their managers. Clinicians in this country are doing their utmost under very difficult conditions.”
“We had a consultation with the anaesthetist who told us she was not sure if it would be safe for him to have a full general anaesthetic and that, therefore, he might be inoperable. My son had the surgery in 2018. We did it during transition year when his friends were off doing their activities. He went into Temple Street hospital. The surgery for spinal fusion involved a procedure of about 12 hours. His development was restricted because of the scoliotic curve to his spine. He is only a little fella. During the procedure, they had to use about 8 l of blood and blood products. Imagine that quantity or volume of blood. The surgery went on for about 12 hours and, luckily, they were able to correct the curvature, although not completely. They were able to alter it, put in the rods and do the spinal fusion.”
“This is not the Minister's fault. This is a situation she has inherited but it behoves me to point out the stark reality of this and the lack of a service, as set out in section 1. As I said, my son's lung function was down to about 30% but his heart was also compressed. We went to a paediatric cardiologist in Temple Street hospital who did a scan prior to surgery. Initially, she could not find his heart because it was in a part of the chest cavity where it should not normally be. This was so unusual she asked us if we could record it because it was a teaching point. She got the registrars to come in and have a look. We all watched my son's little heart beating in a part of the chest where you would not normally find a heart. This meant that for surgery, he became a respiratory risk.”
“In Ireland, the spines of disabled children are allowed to go to a point that is not accepted in any other country in the European Union or the developed world. We allow our children and their spines to deteriorate to such a point that in my son's case, it compromised his breathing. His lungs were compressed as a result of the twist in his chest cavity to the extent that he only had about 30% lung function. That impacted on his voice and ability to speak. The other joy of being disabled in Ireland is that my son never got speech therapy or physiotherapy. No, not in Ireland, where you do not get meaningful speech therapy, occupational therapy or physiotherapy. As a family, like the hundreds of children and families who are on that waiting list, we have to watch our son deteriorate for lack of a service, as set out in section 1 of the Bill.”
“Like all the children on this list, his surgery was delayed. I say this as a public representative. The only reason I am here, as the Minister knows, is because of our family's experience of disability and unmet need across all aspects of disability in this country. I am also mandated by the UN Convention on the Rights of Persons with Disabilities, to which we have been fully signed up since 31 October, to speak to the lived experience of disability, specifically in relation to scoliosis and the provision of a service as set out in section 1. My son should have had scoliosis surgery when he was about 12 years old but he did not. It was delayed for four years, during the teenage years when little organs are developing and all of these changes happen. From the ages of 12 to 16, we watched our son slowly twist and turn in his wheelchair.”
“This is something that is exclusive to disabled children, which begs the question what kind of Republic is this. If we deny treatment to a group of citizens on the basis of their ethnicity, then we would be racist. If we denied it on the basis of their sexual identity or their sexual orientation, we would be a homophobic nation. We are denying disabled children treatment based on their additional needs. This is, by definition, an ableist republic. Unfortunately, the reason we, the grown-ups in the room, are introducing this legislation on Committee Stage today is to force or compel the State and its agencies to do what is right. Let me tell the House what delayed and denied treatment looks like. I say this as a carer and parent to a young man who had spinal surgery for scoliosis in 2018.”
“It is not happening within the therapeutic window. Treatment delayed is treatment denied. I heard the word "misspent" used by the former Minister about the €19 million, that the money was misspent and that it was not spent on those purposes for which it was originally intended. Members have probably heard of the expression "a misspent youth". We have children on that waiting list whose youth and potential as human beings, as adults and as citizens is being misspent. It is being squandered away in a republic that has plenty of money. It is not just a national scandal. I will refer to this further. What is happening to our disabled children is an international medical scandal. It does not happen to able-bodied adults when they present to the accident and emergency department with chest pain or cancer.”
“There are hundreds upon hundreds of Irish families who find themselves in this situation. As Senator Craughwell and other Senators have said, it is very difficult to get facts and figures and transparent information from Children's Health Ireland, CHI. For my best efforts, and the figures are disputed by the parents and the advocacy groups, at the moment more than 130 children in acute need of surgical intervention are on a waiting list and have no date for surgery or for an appointment for surgical review with a qualified spinal surgeon. This all speaks to the requirements that are set out in section 1. Every single one of those children on that waiting list is not getting the surgical interventions, even though they are in acute need of it. I just want to be clear that when they do get the surgical intervention, it is often too late.”
“If you are pregnant and you go to a maternity hospital, you will be seen, you will be scanned and in due course, depending on your choice, you will be brought to a delivery suite and your child will be delivered. If, however, you are a disabled child you will not be seen. A pregnant woman would not be given a handout or a link to YouTube and be told this is some advice on what to do when the baby comes, best of luck with it and she will be seen in five years' time. That is not what happens in any other branch of medicine, but when it comes to disabled children, they are denied treatment, simple as. We have children on those acute waiting lists who have become inoperable. I have met the parents and families of those children. There are people watching this evening from OrthoKids Ireland and from the Scoliosis Advocacy Network.”
“We are failing to save children and adults in the Republic. It is not because we cannot do it, because we certainly have the financial wherewithal to do so. It is because we choose not to. As I have said before, if anyone here, heaven forbid, presents at an accident and emergency department with chest pain, notwithstanding all of the chaos in our emergency departments, they will be treated. If they need stents, they will get stents. If they need a bypass, they will get that. If they have cancer, notwithstanding all the delays and the chaos in our emergency departments, they will be seen by an oncologist, they will be treated by the team and they will get chemotherapy, radiotherapy and so on. We are seeing improved outcomes in that regard.”
“I thank the Minister for coming to the House this evening. I echo my colleague's congratulations. Déanaim comhghairdeas léi. I am delighted she has been appointed as Minister because, as others have said, she has the tenacity and capacity to deal with the many challenges that confront us in health. I thank Senator McDowell for drafting the Bill, bringing it forward and having it reinstated on the Order Paper. I want to specifically address section 1, relating to the establishment of a scoliosis treatment service "for the timely detection, assessment and remedial treatment of scoliosis for all children and adults". That is the key point. As a wealthy republic in the First World, can we actually treat disabled children within the therapeutic window? I am afraid to say that, as it stands, we cannot and we do not.”
“Why is this money being spent in that way? We need accountability from St. John Ambulance and, as a House, we should again demand that full public inquiry. I ask the Leader if we could have another opportunity to ask the Minister, Deputy Foley, to reflect and consider what is reported in the media about there being no plans for an inquiry. There really needs to be one.”
“However, if we are serious about sex offenders, sexual abuse and toxic masculinity, it is really important we ensure that the voices of boys and men who are survivors of sexual abuse are listened to, because it is the same toxic dynamic. I remind the House that last year, we had a debate on the publication of the Shannon report. It was unanimously agreed the report should be published, and it was, but it was also unanimously agreed here across parties that there should be a full public inquiry into what has happened in St. John Ambulance. I am very concerned that it is using its money and core funding to pay solicitors and barristers to forensically and adversarially examine survivors and expose them to hostile scrutiny. The organisation is also spending hundreds of thousands multi-annually on a PR contract.”
“I have been contacted by some of the survivors who have told me that the Director of Public Prosecutions, DPP, has not decided to proceed with any prosecution based on the evidence and testimony given by seven survivors. This is absolutely devastating for those survivors. As Senator O’Loughlin mentioned, we all condemn toxic masculinity in this House. On St. Patrick's Day, we had the spectacle of two rapists grinning, smirking and laughing from the Oval Office, with one of them purporting to represent the people of Ireland. We really need to stand firm and I praise the Taoiseach and the Tánaiste on their condemnation and rebuttal of that individual, whose name I will not mention here.”
“I remind the House that the Shannon report into serial and systematic sexual abuse of young men and boys in St. John Ambulance was published two years ago, in March 2023. We hear from reports in the media that there is no plan on the part of the Minister, Deputy Foley, to have a public inquiry into what happened at St. John Ambulance. I would be concerned about what is happening in St. John Ambulance as we speak. During the preparation of Dr. Shannon’s report, he engaged with more than 100 young men and boys who had been sexually abused and raped while under the care of St. John Ambulance. We might think about the parents who handed their children over to an organisation like St. John Ambulance in loco parentis , in good faith, only to find that their children had been sexually abused and raped.”
“If they do not get that, they will suffer from higher cancer risks - I am talking about multiples - of bowel, ovarian and bladder cancers, infertility, incontinence and all the psychosexual problems that go with not having these key interventions. Within the lifetime of this Government, this is an area in which the Minister could really make a difference with regard to our disabled women and girls.”
“Members all remember when they were teenagers and how difficult that can be, but to be a disabled girl, adolescent or young woman, it is even more difficult. Compounding that is the lack of the transitional model of care that is commonplace in other jurisdictions. For example, it has been in the NHS for 23 years, since 2002, and it has been rolled out in the United States since 2005, so it is international best practice, and it is long recognised. It is not happening here. These girls and teenagers need to have a consult with a urological surgeon and then to have surgery within two and a half years at an absolute maximum to have vaginal reconstruction.”
“People will be aware of the issues around the scoliosis waiting lists, and the fact that we have children, boys and girls, who are not getting the surgical interventions they need within the therapeutic window. There are hundreds of boys and girls on the urological waitlist list and 40% of the girls and young teenagers and, in fact, young women on that waitlist qualify for or need what is called the transitional urology programme because for certain disability issues and certain diagnoses like cerebral palsy, for example, although there are other issues, young women and girls experience congenital anatomical changes in their genitalia and reproductive organs. This is a cohort of young disabled girls and Irish teenagers who have to go through all the pathways of adolescence.”
“Cuirim fáilte roimh an Aire go dtí an Teach. Déanaim comhghairdeas leí. I have not seen her since her appointment. I am delighted for her. I know she will be very good in the role. I wish a happy International Women's Day to all of our colleagues and all those watching. I owe so much to the women in my life, including my mother for giving birth to me. "Thank you, mum". May she rest in peace. I want to talk about a concern that has been raised with me specifically in the context of women's health by two paediatric surgeons. It relates to the urological waiting lists at Children's Health Ireland. This is an issue that impacts predominantly disabled girls and young women.”
“I know there is a pilot for that. I will introduce the Minister of State to Kelly-Marie to see if he can follow up on Eve Lynne's case, but we should not have to do this on an individual, case-by-case basis. Families like Kelly-Marie's should not have to go public and tell their story. It is like a perverse version of "The Hunger Games". We have to go on "The Late Late Show" to get wheelchairs for our children. It is like a show of Ireland's sickest family, to try to get basic supports. It is just not good enough. It is a circus. I say that in the worst possible sense. Our disabled citizens need rights-based legislation to completely put an end to this bit-by-bit attritional attempt to help people.”
“I absolutely acknowledge the Minister of State's sincerity and that of Senator Rabbitte on these matters. The Minister of State mentioned the CDNTs. The CDNTs are completely and utterly dysfunctional. My understanding is that the person who launched the CDNT programme was seconded to the HSE. They were not a clinician. There was never any clinical sign-off on the CDNT system and they have absolutely destroyed what little we had. There was never any clinical risk assessment of what would happen to our children and now it is happening. That person has utterly evaded any responsibility. I am hoping that we get the committees up and running because I want that person in front of the committee on disability matters to answer those questions. We need to have clinicians in the place where children are, in the school setting.”
“I ask the Minister of State to implore and require the CDNT in the Dublin 5 area to deal meaningfully with this and intervene now, even at this late stage, to assist Eve Lynne Woods. We can do much better than this.”
“Can the Minister of State imagine what that is like and the pain of it? Not only do the parents have a diagnosis of additional needs but, in Ireland, they go through the looking glass into this parallel universe of unmet need, anxiety and suffering. Kelly-Marie should be at work today but she is not; she is here. She has had to move to work part time because of the constant, reiterative failure of the HSE in her daughter's cause. Reading through the background, she gets one appointment with a physiotherapist from a children's disability network team, CDNT, who carries out a consultation over a camera phone to look at her foot, which has developed a turn. This is shocking. We should be ashamed of ourselves.”
“Why is that? Why do we fail so many disabled citizens and citizens in Ireland with additional needs? It is precisely for that reason - they are disabled. As a jurisdiction, we differ from all other jurisdictions in the European Union, in that there are no legal rights to treatment, supports, therapies or interventions in this Republic. They exist everywhere else in the European Union. That is because, in Ireland - I am ashamed to say it - we assign less human value to the boys and girls who have additional needs than the so-called able-bodied community. We are an ableist State. If people are not familiar with that word, it is as infamous as racist, sexist and homophobic. We are ableist. Let us imagine parents watching their child deteriorate and being powerless to intervene.”