Seanad debates

Monday, 29 March 2021

Reports on Department of Health Policy in RTÉ Investigates Programme: Statements


10:30 am

Photo of Joe O'ReillyJoe O'Reilly (Fine Gael)
Link to this: Individually | In context

I welcome the Minister of State, Deputy Rabbitte. I think I previously congratulated her formally in the House but if not, it is no harm to do so again.

Photo of Anne RabbitteAnne Rabbitte (Galway East, Fianna Fail)
Link to this: Individually | In context

I feel and understand the heartache, worry and disgust that has been raised by the "RTÉ Investigates" programme last Thursday. As any parent knows, we would go to any lengths to protect out children's rights. That is why it was like a kick in the stomach to learn that a Government body appeared to be impeding this process of parents fighting for their children. I was alarmed and outraged, as so many Members were. Since Thursday's broadcast, families have been left to question whether they have been impacted. Work is now under way in the Department to assess all files and to see what contact may be needed so that families can be informed.

I cannot believe a policy like this has been in place in the Department for more than a decade. I have only been in government as the Minister of State with responsibility for disability in the Department since last July and this is not a process I was aware of, nor had I been informed that a senior counsel had investigated the matters raised by the whistleblower, Shane Corr. I thank Shane for bringing this to the public's attention. That was a brave and courageous thing to do. I have not spoken to Shane but I am sure he felt this was in the public interest and needed to be reported. I tend to agree.

The Taoiseach's announcement on Friday that a multidisciplinary team will conduct a policy review is the correct way forward. This will allow us all to understand what legal basis was used to underscore this system and what alternative is needed. I share the anger of the Ombudsman for Children, the public and many of my Government colleagues. I am sure there was no malice intended on the part of the Department, but the public needs to be able to trust the systems in place because they are in place to protect the rights of children, particularly our most vulnerable.

I understand the Department and, indeed, other Departments and State agencies need to have policies and procedures in place to manage litigation and the public understand this. There is a reality that the Minister for Health, the Minister for Education and the HSE are named from time to time as defendants in cases. It is the role of the Office of the Chief State Solicitor to provide litigation services to Departments under the direction of the Office of the Attorney General and it regularly jointly represents State defendants in litigation.The Department has told me that, in these circumstances, it is normal practice for defendants to litigation to co-operate and share appropriate information with each other where they have a common interest. I am informed that service information related to the cases is periodically received or sought by the Department from the HSE. The Department has always understood that it has a clear, legal basis for obtaining, sharing and retaining this information. The Department of Health is clear that it does not routinely seek clinical reports on plaintiffs from clinicians. I am also told that sensitive information related to cases always comes directly from plaintiffs as part of the advancement of their cases and that this information is provided by senior solicitors on their behalf with their consent.

We must acknowledge, however, that while what happened may have been lawful, it does not mean it was right. Driving without a seat belt used to be lawful but it does not mean it was right. My view is that the system lacks transparency. It appears shady even if that is not the case. The State should never even give the impression of operating in any kind of cloak-and-dagger way. I simply cannot stand over this particular system. It needs to stop now, and a new, more transparent method of managing the kinds of legal cases in question needs to be developed. Only then will it be trusted and will trust be restored.

I was so dismayed after watching the programme that I met senior officials in the Department on Friday with a series of questions so I could try to understand this policy. I am sure viewers of the programme and Members of the House have had similar questions. I will share some of the questions I put forward. How many open cases are there? How many impacted families will need to be contacted? When did this practice of case management start? Was other legal advice on this practice sought from other senior counsel, data protection specialists or the Attorney General's office over the years? If so, what was it? How regularly did the Department seek updates on these cases from the local HSE community health organisations, CHOs, and who sanctioned it on each occasion? How much of the material received came from the litigants for the family? When was the senior counsel hired? Why was the Minister not informed that the report had been received, or informed of its findings? How many people had access to the information over the years? What is the plan for the spreadsheet referenced, and is it still being used? Are there similar case management protocols in place elsewhere in the Department?

A multidisciplinary team is now going to investigate these matters further. It will also develop a more appropriate policy framework. We must ensure the system is transparent and patient-focused and advocates for what is best for the child and family. I have seen the hard, Trojan work done by the staff in the Department of Health and I have noted how child-centred they are. Every day, I meet several officials who genuinely ensure the rights of the child are the focal point of our work. Even in the midst of the pandemic, they are always working towards the more equitable provision of healthcare. My fear, however, is that this issue will have dented the great work across the health service.

Before I came into the House this morning, I received a telephone call. I was informed by the Secretary General that the intention is to publish the senior counsel's report. The Department is just receiving legal advice on it. I am referring to the senior counsel's report that was ordered by the Department last year and concluded in November, at a cost of €10,000 to the Department. Legal advice is now being sought on its publication.

Photo of Joe O'ReillyJoe O'Reilly (Fine Gael)
Link to this: Individually | In context

I call Senator McGreehan, who is deputising for Senator Clifford-Lee.

Erin McGreehan (Fianna Fail)
Link to this: Individually | In context

I thank the Minister of State. I was very glad to hear her comments. It was only human for all of us, including me as a mother and spokesperson on disability, to be absolutely horrified when we watched the report last week indicating that we have a Department that has been holding private medical records for decades for no reason other than that those concerned are involved in litigation, and that we did not act.I read he letter from the Department's Secretary General. It reads:

[We] regret the distress that headlines from this programme has [sic] generated. I would like to reassure [people that we have] never unlawfully held sensitive medical and educational information of children ...

If it is not unlawful, it should be. I am delighted the Minister of State has asked clear questions and I welcome the review of the policy, but each of us can express our horror and mistrust at the breach of privacy and the overreach of the hand of the State, which we have seen repeatedly. From my involvement with the mother and baby homes issue, I have seen how the State just takes control, thinks it knows best and overreaches its authority. We are seeing that in this instance. There was litigation because the State was failing these children. We failed them every day of the week. That situation is beginning to change and I am glad that, under the Minister of State's leadership, there have been many positive changes. This will be another positive change, but the reassurances from the Department and its Secretary General are not great. It is a shame Deputy Rabbitte, as a new Minister of State, has to clean up a mess that happened decades before she even dreamt of being in her role.

This situation is abhorrent. We need to reassure parents whose situations are so bad they have to sue the State. They are exhausted. They did not just decide to sue the State. They sued because they were at the end of their tethers and suing was the last resort. Then this breach of trust happened.

I will not delay the House for too long. I hope urgent action is taken. The Secretary General wrote that what happened was not unlawful, but it damn well should be. People's privacy and the trust they have with their doctors were breached. My records should not be disclosed if I am suing the State. I have had a few mishaps with the HSE in my time. Were I suing the State over those, the Department of Health should not have access to all of my medical files.

The whistleblower who appeared on "RTÉ Investigates" was phenomenal and brave. I could see the upset on his face over the files and videos he had seen. Speaking as a parent, it was incredibly upsetting.

I am glad there will be a review. Let there be less haste, but get it done so that we can restore parents' trust.

Photo of Joe O'ReillyJoe O'Reilly (Fine Gael)
Link to this: Individually | In context

The Senator was well under time, so it might be appropriate for me to indicate that party spokespersons have six minutes each.

Photo of Gerard CraughwellGerard Craughwell (Independent)
Link to this: Individually | In context

I welcome the Minister of State. She is only just in office. Unfortunately, part of her role is to take on issues like this.

When I started teaching, I had a wonderful principal by the name of Jack Griffin. His advice to the teachers he hired was, if they placed the student at the centre of everything they did, they would never have a problem with him. A caring State would place the child at the centre of everything it does. We would drive to deliver the best possible outcome for every child regardless of class, creed or whether the child had special needs.My first question is: why would any parent have to go to court to get what was rightfully their child's care? Why would we do that? How many parents who needed those things simply did not have the wherewithal to go to court? When a person takes on the State, he or she takes on the might and the deep pockets of every Department in the country.

The "RTÉ Investigates" programme, which I watched last Thursday, makes one's blood boil but it is necessary to step back and think logically about what was going on. Citizens of the State were suing the State and it was a multi-departmental lawsuit. In such a situation, I would fully expect that Departments would share information to fight the case. I have already stated they should not have had a case in the first place, but if they were going to court, the defendants have the right to defend themselves and in this case the State has the right to do that. However, looking at the countless things that have arisen in recent years from cervical cancer the full way through, it seems as though the first thing the State does when a case comes in is to pull down the hatches and everyone comes together to see how they can fight it.

The creation of the dossier, to my mind, is perfectly reasonably, but we need to go beyond it and ask what else was involved. According to the programme, doctors, consultants and psychiatrists shared the private information of their patients with a public body. That is not a case for anyone in this House to deal with but for the professional organisations which manage these people. They have codes of ethics and practice. It is my view the professional organisations need to step up and investigate this. If some consultant, doctor, psychiatrist, career guidance counsellor or special needs teacher did something wrong, there needs to be a sanction for that. I do not blame the State for doing what the State does to protect its assets but we need to go further. The programme merely scratched the surface of the denial of constitutional rights to children with special needs. That denial goes right through their lives. Recently, a teacher told me a 15-year-old child was exiting the school system, had absolutely no social skills, and was to all intents illiterate in reading and maths.

I am asking the Minister of State to go beyond where we are today. I wrote to the Taoiseach and Minister for Education at the weekend. We need an audit of everything to do with those children who have been allocated resources by the State, specifically special needs kids in schools. Are they getting every hour that was allocated to them on a one-to-one basis or has there been a misuse of hours? It has been reported to me there is a fraudulent misuse of hours going on in education, both at special needs assistant level and at the teacher level. We need to step into the Department of Education and pursue every single special needs child allocation that has been granted over the past 30 years if necessary and see whether those children received the hours they were entitled to and if they were one to one. I have been told that in some schools there might be, for example, six children assigned three hours of one-to-one education each. Someone might amalgamate the six kids, put them in a room for three hours and now they have had their three hours special needs education and the school has 15 hours to play with. If that is going on, we need to find out and we need to find out right now.If we have denied children their special needs resources, we, as a State, need to step up to the plate. I could say more but I appreciate there are time limits.

Photo of Joe O'ReillyJoe O'Reilly (Fine Gael)
Link to this: Individually | In context

I thank the Senator and appreciate his co-operation for the smooth running of the House.

Photo of Martin ConwayMartin Conway (Fine Gael)
Link to this: Individually | In context

It is great to have the Minister of State back in the House. Like other speakers, I was disturbed by what was revealed in the "RTÉ Investigates" programme on Thursday night. It is a programme that, by and large, gets things right. That is not always so and the case of Fr. Kevin Reynolds was one where it did not get it right. However, by and large, it gets things right and would not run with and put significant resources into this type of programme unless it was fairly sure of its ground and that there were serious questions to be answered.

That said, the Government has acted swiftly. The Taoiseach, to his credit, ordered a review the following day, which was the appropriate thing to do. We have been told by the Department, confirmed by the Minister of State today, that a senior counsel carried out a review following the protected disclosures made by the whistle-blower. I welcome the fact that the report is going to be published. The Joint Committee on Health wrote to the Minister for Health, Deputy Stephen Donnelly, on Friday evening, requesting a number of things, including that the report be made available immediately to the whistle-blower. This Minister of State might confirm whether that has happened and if the report will be made available to the health committee by tomorrow, ahead of its private meeting to discuss how to proceed on this matter. It has, essentially, been decided by the health committee that we will invite the current acting Secretary General of the Department of Health to a meeting immediately after Easter. We will also invite the former Secretary General of the Department of Health, Mr. Jim Breslin, who is now Secretary General at the Department of Further and Higher Education, Research, Innovation and Science. We are interested in having a discussion with both gentlemen about their concerns. It was reported over the weekend that the current acting Secretary General contacted the director general of RTÉ to share information and express concern about the programme. It would be unusual, to say the least, for the Secretary General of the Department of Health to ring the director general of RTÉ to intervene in a programme to be aired that night. I will not say it was inappropriate because he had good reasons for doing so and is a long-standing civil servant. I do not question his motivation. However, it is rather unusual that it would happen. I would like to know why it happened and what was the information he had and shared with the director general that he felt should change her mind about airing the programme.

Much will be clarified when the senior counsel's report is published but the core principle here is medical ethics. Have medical ethics been broken here? That is the nub of the problem and it is a serious situation. When any of us goes to our consultant or GP, we expect absolute confidentiality and that information will only be shared with our prior knowledge or consent. This is exacerbated further when we are talking about children. If information has been shared to build and compose a legal case without the prior knowledge of the parents or their legal representatives, that to me appears to be a breach of medical ethics. The medical and professional bodies must make a statement and, in order to restore public confidence, outline their exact view on this matter. It is always regrettable to see parents having to take the State to court in order to secure educational supports for their children. It should not happen and should be avoided.However, I live in the real world and I know these things sometimes happen. They may happen for reasons with which I am not comfortable, but they happen. Of course, if the State is seeking to defend itself against a case, it is entitled to build a case in order to put forward the best defence possible because this involves taxpayers' money. When that happens, all relevant information should be provided. However, if medical ethics are broken, then we have a serious problem.

I hope the rapid review the Taoiseach has ordered within the Department will report without delay. The parents who may currently be considering legal action are in a perilous situation and do not know whether they are coming or going. The sooner there is clarity on this issue, the better.

If the Minister of State cannot confirm to the House that the report of the senior counsel has been made available to the whistleblower, I sincerely hope she will prevail on the Secretary General of the Department to make the report available to him. The consensus is that the whistleblower has done the State service with this protected disclosure and has shone a light on activities that, at the very least, are questionable and need to be examined. It is not good practice for him to be refused access to the report of the senior counsel. Will the report will be made available to the Joint Committee on Health? It is due to meet at 9.30 a.m. tomorrow. In order to allow me and other members of the committee to deliberate on the report in an effective and proper way, we need sight of it sooner rather than later. I ask the Minister of State to confirm the timelines in that regard.

Photo of Joe O'ReillyJoe O'Reilly (Fine Gael)
Link to this: Individually | In context

The next speaker is Senator Bacik, who wishes to share time.

Photo of Ivana BacikIvana Bacik (Labour)
Link to this: Individually | In context

With the permission of the House, I will share time with my colleague, Senator Sherlock.

Photo of Joe O'ReillyJoe O'Reilly (Fine Gael)
Link to this: Individually | In context

Is that agreed? Agreed.

Photo of Ivana BacikIvana Bacik (Labour)
Link to this: Individually | In context

I thank the Leas-Chathaoirleach. I welcome the Minister of State to the House and thank her for her attendance. I thank the Leader for organising this emergency debate, for her strong words of outrage and, indeed, for disclosing to the House the very positive news that the report of the senior counsel is to be published. I think all Members who watched the "RTÉ Investigates" programme broadcast last Thursday were utterly shocked and outraged on behalf of the families and children whose privacy and trust in the State were so grievously impaired by the actions disclosed in the programme. Commendation is due to Conor Ryan, the journalist behind the programme and, indeed, to Shane Corr, the very brave whistleblower.

The families in question have been treated with contempt and a lack of compassion by the State. They have faced enormous waiting lists and are exhausted trying to fight for the rights of their children. AsIAm expressed it succinctly, stating that the programme disclosed a grievous breach of privacy and trust of families who have already gone through so much. I am grateful to AsIAm and others for sharing with me their views in the wake of the programme. I am also grateful to Róisín Costello, who wrote such a clear article, published in today's edition of The Irish Times, setting out the legal context and the key issues, namely, the lack of knowledge and consent on behalf of the parents to the sharing of this highly confidential and sensitive information.

I know the Data Protection Commissioner is already reviewing the matter and the Minister has ordered an audit. I hope we will all see the report of the senior counsel. I join colleagues in asking the Minister of State to clarify whether publication of the report means publication more generally or just to the Oireachtas Joint Committee on Health. We need to see further inquiries being made. It may be the case that, ultimately, a public inquiry is warranted. Until we know more we cannot be absolutely sure, but it appears clear that there have been breaches of medical ethics in the sharing of patient information without the consent of the patients. It also appears there was sharing of sensitive and confidential educational information, namely, school reports, again without the consent of the parents or children. The Medical Council and governance bodies for schools and teachers may well have a role in investigating those breaches of professional ethics because it is clear there are issues in quite a number of settings in terms of disclosure of information without consent.The Joint Committee on Health has asked seven key questions. Our colleague, Senator Hoey, sits on that committee on behalf of the Labour Party. We all hope the health committee will be facilitated in holding the hearings Senator Conway stated it was seeking next week. We all wish to see the seven questions it has raised answered.

The first question relates specifically to the publication of the senior counsel's report, so it may now be dealt with. It is important we know the extent to which other individuals, who according to Mr. Shane Corr were numerous, had access to this sensitive information and we need to know if there has been more disclosure of sensitive information, about which we do not know, in Department. I thank the Minister of State for coming in to us.

Marie Sherlock (Labour)
Link to this: Individually | In context

I thank the Minister of State for coming to the House and for her comprehensive statement. I join Senator Bacik in welcoming the Minister of State's statement on the publication of the senior counsel's report.

Like so many other people, I was horrified by what I learned from the "RTÉ Investigates" programme but we must keep reminding ourselves that at the heart of all of this are families with some of the most vulnerable in this State. These families are trying to vindicate their children's constitutional and essential right to appropriate education yet the Department of Health has chosen to expend valuable time, money and resources in an intelligence gathering exercise on both children and families at the centre of these cases.

We use the phrase "the State" but that is a broad term. I am sure hundreds of workers in the Department of Health and our health services are doing their best to deliver services to these most vulnerable of children day in, day out. It must be quite a kick in the teeth for those workers seeing the activities of the Department of Health's litigation unit.

The Minister of State and Senator Bacik referred to the seven questions that need to be answered. Ultimately, they boil down to the following questions. Why was the Department gathering this intelligence? To what use was it putting this information? It was not just about the child but about the family.

The Minister of State spoke about trust. Ultimately, the issue here is about culture in Departments. If one goes up against a Department, one does so at one's peril. There are serious question about why a litigation unit would want to gather information on a family member's alcoholism, obesity and overall mental state. Those were only some of the references we saw on Thursday night's programme.

We owe a debt of gratitude to the whistleblower, Mr. Shane Corr, the "RTÉ Investigates" programme and Mr. Conor Ryan for bringing this to light. The Government now needs to move swiftly because this is not just about the families concerned, it is about trust in the State's institutions.

I made a reference in the Seanad last Friday that needs to be repeated. The legitimacy of the State is facing a significant challenge from the far right, people who do not want to believe in the institutions of our State. I refer to revelations about the activities of our State, such as those about which we learned last week, coming out time and again and about the use of information. What was it going to do with the information? We are aware the State's institutions have previously used information about persons to undermine their cases. We saw it in the case of a child whose family was threatened with deportation a number of years ago. We must clean up Departments to restore trust in the State's institutions.

Photo of Anne RabbitteAnne Rabbitte (Galway East, Fianna Fail)
Link to this: Individually | In context

I want to correct something. In my opening statement, I said I had been informed by the Secretary General this morning that it was the Department's intention to publish the senior counsel's report. It is receiving legal advice on it at present. I want to clear that matter.

Photo of Joe O'ReillyJoe O'Reilly (Fine Gael)
Link to this: Individually | In context

I appreciate the clarification. It is important the House is aware of that.

Róisín Garvey (Green Party)
Link to this: Individually | In context

I thank the Minister of State for coming in today. Unfortunately, she has been handed another poisoned chalice.It is a very serious matter. I speak on behalf of people who have worked with children with autism and the parents of children with autism. I want to be a voice for them today. I reached out to them after the event and they reached out to me. The average person affected by this has a series of questions and would like to find out the following. How do families establish whether there is a dossier on them and their children? Will the Department contact the affected families directly? How do they access the dossiers? Can a step-by-step approach be provided? What are the proposed lines of inquiry into why this has happened? Who requested sign-off on this? What are the proposed actions?

There is a request for an independent inquiry as it is not ideal for Departments to investigate themselves. It would be useful if a help desk or helpline was set up for parents to work through the actuality of the dossiers. Last night I tried, with a parent, to go through the HSE website on this and we could not find anything. The website just stated that there would be information available. We want to make it as easy as possible for these people, who have been really traumatised by what has happened. Can we ensure that this culture, which lacks both accountability and transparency, is addressed with both a top-down and bottom-up approach to the inquiry? Can the greater picture of lack of appropriate service provision for children and adults with disabilities, which I have spoken about umpteen times in this Chamber, be addressed across the lifespan of an individual? Can it be addressed meaningfully, thereby preventing this from happening again? We need to break the mould.

It sometimes appears that the HSE deals with files rather than humans. This issue affects people individually. It is heartbreaking that not only does a family have the challenge of dealing with somebody with a disability, whatever it is, but often seems to have the extra burden of launching its own individual campaign to fight for the rights of their child. It has to stop. The Minister of State could be the one to break the mould on this. She will have to try her best and I will support her in any way I can. I am sure she will agree it is not fair and it is wrong. We need to do better and I am sure the House will be behind her on that support.

Everything seems to be a battle. I have a friend who used to drive to Galway just so his child could attend a pre-school for autistic children. We do not have enough people trained in anything to do with any of these disabilities either. That is a huge issue. Training on autism cannot just be a two-hour, box-ticking exercise. We do not have enough pre-school teachers, qualified teachers or carers qualified to deal with people with disabilities. Often, a patronising service is provided even if it is not meant to be so. Even with the best will in the world, if carers are not properly trained, it is hard to get it right. People need and want their individual child's needs met. They want the child to be the focus of what he or she needs, not some file. They are not files, they are humans.

Lynn Boylan (Sinn Fein)
Link to this: Individually | In context

I welcome the Minister of State to the House. I too thank her for being honest and up front about her horror at the "RTÉ Investigates" programme. The findings of that programme were extraordinary in that at the same time as families of children with autism are fighting to ensure their children get proper access to services to which they should be entitled, the Department of Health is gathering information to be used against them.

We know from the documentary that the information gathered, as others have said, was of the utmost sensitivity. It included school reports, details of psychiatric consultations with a child and videos of a child in a very distressed state. It was completely inappropriate for the Department of Health to have this information. It was a monumental breach of trust and also appears to be a breach of medical ethics. The whistleblower, Mr. Shane Corr, put it best when he said families had put their faith in the State when they brought their children to see psychologists, psychiatrists and doctors. However, that faith was not rewarded; it was used against them instead.

The way the information was handled just added insult to injury. It was and, perhaps, still is stored on a drive available to an entire division within the Department. As far as the families were concerned, their cases were dormant but the Department continued to collect information about them. Today, inThe Irish Times, we heard from one of the fathers involved, Mr. Cian Ó Cuanacháin, who said that the dossiers were "sickening and retraumatising", but "not surprising to anyone who ever openly challenged the Department of Education or HSE in the courts." It is not surprising to anyone who has openly challenged any Department within this State because the experience of people, even within my own family, is that when the Department is challenged the State circles the wagons.It tries to avoid at all costs any form of accountability and rather than finding a solution or supporting its citizens in finding a solution, it instead brings its entire might down on them. From the "Prime Time Investigates" documentary, it seems there is no level too low to which it will sink.

Sinn Féin is calling for the establishment of an independent, non-statutory investigation into the ethical and legal rationale for this. The review within the Department, as announced late last week, should happen without delay but there also needs to be an independent review of these practices. Is it enough for the Department to investigate its own conduct, especially considering it had commissioned a review, which found the practices to be lawful, proper and appropriate? We want to see an investigation similar in scope and duration to the Scally inquiry into the CervicalCheck screening programme. It should be undertaken urgently and not drag on. We need to know what went on, who took the decisions, and how long it went on for. Several steps could be taken immediately before an investigation is conducted. The practice needs to stop immediately. We need reassurances this is not happening in other Departments. It was a monumental breach of trust, immoral and unethical. Families need to be supported in finding out that information and told exactly what information is being held about them. Files held by the Department of Health need to be removed immediately and stored safely until this situation is resolved.

I have a number of questions I hope the Minister of State can answer. She has said it is the intention of the Government to publish the senior counsel report. We welcome that and hope it happens but we need to know whether the initiation of this information gathering process was sanctioned by the Minister of the day. Who was the Minister, and did he or she know about it and approve of it? We know the whistleblower raised concerns with his bosses in the Department of Health last year. Who was Minister at that time? Was it Deputy Simon Harris or Deputy Stephen Donnelly? Were they informed of the fact a protected disclosure was made by the whistleblower?

I thank the Minister of State for her honest and frank statements. I hope she is in a position to address some of the questions I asked and that the Government will support our call to establish an independent inquiry.

Photo of Joe O'ReillyJoe O'Reilly (Fine Gael)
Link to this: Individually | In context

I thank the Senator. I emphasise your name this time and I apologise for earlier. I am sure both Senators Boylan and Ruane are anxious to maintain their individuality, and they are well capable of doing so.

Photo of Lynn RuaneLynn Ruane (Independent)
Link to this: Individually | In context

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.

Photo of Joe O'ReillyJoe O'Reilly (Fine Gael)
Link to this: Individually | In context

I thank Senator Ruane for sharing her personal experiences with us. It gives a reality to the discussion.

Photo of Lisa ChambersLisa Chambers (Fianna Fail)
Link to this: Individually | In context

That is difficult to follow. I thank Senator Ruane and her daughter.What really struck me was Senator Ruane's comment that her daughter asked whether her stuff was in there. That tells us that one our first jobs is to now reassure every child who has sought help that his or her stuff is not in there and will not be used. I put the Department on notice that this issue must be tackled immediately.

I thank the Minister of State for making herself available today. She only received our request last Friday and her attendance shows how seriously she takes this issue. I know she had no hand, act or part in any of this, but it falls to the current ministerial teams in the Departments of Health and Education, and the Government as a whole, to respond to this issue and address it in a meaningful way, one that shows there are consequences for what has happened. The response must not be a report that will gather dust on a desk.

On the "RTÉ Investigates" programme that was aired, it is remarkable to say in this Chamber that the Department of Health was secretly using information from private consultations to build and maintain dossiers on children with autism to aid it in legal actions that were taken against the State. I am still trying to come to terms with the fact that this happened in this country. The work was done in co-operation with the HSE and the Department of Education. It involved detailed information sourced directly from confidential consultations between children and their families and doctors and professionals. These dossiers include sensitive medical and educational information on the children involved. They were built and maintained over a number of years by the Department without the consent or knowledge of parents. The reports include details of specialist service provision and document the well-being and mindset of parents as they cope with the needs of their child. Families were completely unaware that their disclosures to medical staff were passed on to the Department. Nobody knew about this. The information was then shared to aid the Department in putting together its legal strategy and help it determine when might be the best or most opportune time to settle cases out of court. It all came down to money rather than the well-being of the children.

The practice only came to light because a brave individual made a protected disclosure. An employee of the Department of Health gave information that files were being kept on children that were detailed, extensive and involved material sourced directly from consultations with psychiatrists and other medical professionals. I commend the individual on being brave enough to step out when others felt they could not do so. It is welcome that the Taoiseach has asked the Minister for Health to review the matter but that is just the beginning of the process. The fundamental role of the State is to advocate for the child and ensure that every child reaches his or her full development and potential. Above all, the State must protect the rights of the child. That did not happen in this case.

I know the Taoiseach believes this issue merits a full examination and will consult the Ministers for Health and Education. A multidisciplinary team involving the whole of government will be established to respond to this matter. We need to fully understand what happened but we must see real and meaningful consequences. As Senator Boylan said, we need to know who made the decisions, when they were taken and who was involved.

I acknowledge all of the employees who may have been aware of this issue over the years. We must be careful to acknowledge the difference between somebody who had the power to make a decision and those who were powerless to do anything about it. I say that because many people will feel an element of guilt for being complicit to a certain extent but many of those who were in that position may have felt they did not have the ability or space to come forward in a safe way. I emphasise that we are looking at the top level of management here over a number of years.

This is a nasty legacy issue, one of many that the State is grappling with and one of many where children have been failed by the State. I appreciate that the Minister of State is here to listen to the concerns of Members across the House. It is important, first and foremost, that we provide every person who is following what came out of the "RTÉ Investigates" programme with reassurance about their information, privacy and confidentiality. We must then examine, assess and provide the full facts of what happened. There must be consequences.

Photo of Joe O'ReillyJoe O'Reilly (Fine Gael)
Link to this: Individually | In context

I thank the Deputy Leader. I apologise for earlier; I was looking at the list from a different angle.

Mary Seery Kearney (Fine Gael)
Link to this: Individually | In context

I thank the Minister of State for taking this debate at such short notice. We really appreciate it. I also thank Senator Ruane. Her comments were very powerful. I pay tribute to the whistleblower, Shane Corr, for his bravery and integrity in pursuing this matter. I also pay tribute to Conor Ryan of RTÉ. This was an example of public broadcasting, the fourth pillar of our democracy, at its best.

I do not have to imagine the horror and sense of betrayal families who have children with autism felt last Thursday because I received telephone calls and text messages throughout the programme. Let us be clear that parents should not have to sue the State to vindicate the rights of their children. I appreciate that the State must strike a delicate balance between providing what is wanted and doing what is possible and I appreciate that, in this instance, the gathering of data may well have been carried out without malign intentions. That is not, however, an excuse for excessive monitoring and intrusion into the very private and vulnerable places of these families without their knowledge or consent.

I have questions on this matter. Why was the normal process of discovery within the courts system circumvented? I presume this was done to avoid reactivating cases or alerting litigants to the fact they were being monitored. How dare they circumvent that process? What information was gathered? Was it ever used and, if so, for what purpose? How widespread is this practice? Do other Departments have a similar culture of overreach in the face of, for example, personal injuries claims? This is all before I even start into the area of the general data protection regulation, GDPR, which is my thing. My reply to Senator Garvey's comments is that all those involved should put in data subject access requests because, regardless of whether litigation is involved and whether such litigation is dormant or active, these people are still entitled to their files, saving where records are legally privileged.

We have seen information being gathered without consent or transparency and we have seen the appalling treatment of this information. It is alleged that everybody in the unit in question had access to the information. What an appalling lack of confidentiality that represents. It ignores the very principle behind the GDPR, which relates to integrity in the storage of data. I look forward to seeing the advice of senior counsel. I am very curious as to how these actions will be justified. What does this say about the attitude held towards the real people behind this information and the consideration of them as real people with real lives?

I welcome the Taoiseach's statement that this situation merits further examination and that he is speaking with the Minister of State and other Ministers with a view to setting up a multidisciplinary team to consider the issue but, at the very least, it must have an independent chairperson. I would venture to say that we need a review across all Departments to be sure that this culture is not subscribed to elsewhere. Let us pour ourselves into resolving this issue.

Let us not waste any more precious and finite resources in denying or staving off what is patently and constitutionally owed to the most vulnerable in our society, our children. The Disability Federation of Ireland questions our commitment to the implementation of the UN Convention on the Rights of Persons with Disabilities, and it is quite right to do so. Let us show it our commitment in our actions and responses because these children deserve our determination to advancing their lives.

Micheál Carrigy (Fine Gael)
Link to this: Individually | In context

I speak today not only as a Member of the Oireachtas but, like Senator Ruane, as a parent who has acute knowledge of the system, the lack of services within it and the weekly, monthly and yearly fight for diagnoses to access services. Last week, I was sickened to watch the "Prime Time Investigates" programme and to hear how our State acted in gathering such information with the goal of aiding the Department of Health in developing a legal strategy to determine when would be a good time to settle or ask people to withdraw cases. It aimed to determine the mindsets of parents as they coped with the needs of their children. Details of marriage difficulties between parents and of possible addictions were gathered and efforts were made to find times at which parents, who were in extremely difficult circumstances, were vulnerable in order to get them to settle or withdraw cases. What were these cases? Why were parents taking them? These parents were seeking the provision of education for their sons or daughters. This fundamental right to access education for one's children is guaranteed under the Constitution. We have made progress on the provision of education and education supports for children with autism. We have provided ASD class units and SNA supports but that is not enough. Autism does not disappear or go away when a child finishes primary or post-primary school. It is a lifelong diagnosis but there are no lifelong supports. The rights of persons with autism in all areas of life are enshrined in the UN Convention on the Rights of Persons with Disabilities, but we are far from seeing a society in which people who have disabilities are guaranteed the same opportunities as people who do not. For people with autism, this causes difficulties in accessing education, the labour market, lifelong supports, public services, housing and healthcare. It prevents them from fully participating in all areas of life.

I have drafted a Bill the purpose of which is to provide for equality of opportunity and treatment for persons with autism. I did so on the basis of having spoken to parents and advocacy groups and examined best practice in other countries, and as a parent myself. The Bill will empower persons on the autism spectrum by providing for their health and well-being in society, the betterment of their living conditions and their participation and inclusion in society, and by making conciliatory and consequential provisions in full adherence to the UN Convention on the Rights of Persons with Disabilities. I ask the Minister of State and her officials to discuss the Bill with me to ensure that it will get the necessary support and not hit the brick wall the State builds to block fundamental rights for people with autism. The State needs to right a wrong. It owes these men and women and their families an apology. We owe the families of all children with autism an apology and answers. Ahead of World Autism Day on Friday, I ask the Minister of State to support the boys and girls and men and women with autism and their families.

Photo of Joe O'ReillyJoe O'Reilly (Fine Gael)
Link to this: Individually | In context

I appreciate that. Like Senator Ruane, Senator Carrigy brought a personal dimension to the debate that complements the heartfelt remarks of the rest of the membership of the House. I invite the Minister of State to respond to this important debate.

Photo of Anne RabbitteAnne Rabbitte (Galway East, Fianna Fail)
Link to this: Individually | In context

I thank everybody who took the time to contribute to the debate. Like the Leas-Chathaoirleach, I thank Senators Ruane and Carrigy for sharing their personal information, and their children for allowing it to be shared. I am speaking off script and am giving my opinion. Sometimes people who work in Departments have to detach themselves and ask what the human side is, such as why there was a great deal of outrage about what was revealed on Thursday night last. I stand on the two Senators' side, as both a person and a Minister of State, because I fundamentally understand the outrage that was expressed. I understand what Senator Ruane said about having to sit and talk to daughter, who is now almost an adult. She brought her experience to the House to trust, share and tell. In her knowledge, training and experience, she asked her daughter to trust that this was the right thing to do.

On Thursday night last, Senator Ruane, her daughter, Senator Carrigy and all Senators watched what transpired to be a betrayal of trust. This is no longer a conversation about what is lawful and unlawful, it is about trust. It is time the State listened to the rights of persons with disabilities and, as Senator Craughwell said, put the person at the centre of the conversation. Senator Boylan talked about the conversation and where it is going. We have to recalibrate it and it needs to be independent. When the State acknowledges that it is prepared to listen, we can then step forward. We have to put ourselves in the space of understanding what the families have experienced. The outrage is that while the Department might be detached, and perhaps it is lawful, it does not realise the human impact of what it is doing to families.Does it realise that for years families have sought the service and perhaps the service was not available, which is why they ended up in litigation? I am not a legal person, but my understanding is that there is a judicial review system as opposed to going down the financial path. I did not know that until last Saturday. I had to find out and understand. There is much wonder out there. Am I part of that? Am I in the dormant sphere of it? Where does general data protection regulation, GDPR, come into it? These are all really relevant questions. I do not doubt the Department was doing its best lawfully. Perhaps, however, there is an element of trust. That is the core value of this. It is what the Ombudsman for Children and Professor Conor O'Mahony spoke about. That is what Senators want me to speak about and it is what I have spoken about for the last four years. Just because I became a Minister of State did not mean I threw all that in the boot of the car and forgot about those values, which are very important.

I am, therefore, delighted that the Taoiseach has put an advisory committee in place and that the Secretary General is looking to publish the report and is seeking legal advice. I do not know the timeframe as to when that will be, about which Senator Conway asked. I know, however, that the Department has worked really hard all weekend to answer the questions on how many are dormant, how many are currently active and on how it will communicate. The Department is working on that as we speak. The most important thing we need to do is re-establish that trust and get those answers. If we do not, we need to formulate how we can recalibrate going forward.

As for Senator Carrigy's Bill, of course, I would be delighted to sit down and talk to him. I would be delighted also if officials sat down and had that conversation. Let us involve others and bring more people to the table when we have that conversation about children and autism. There are good people with lived experience. Involve all of us because we can give it a more collective sense of purpose when the voices are there.

World Autism Month begins this week. I look forward to possibly stepping forward on Thursday with a published senior counsel's report. That is the first level of transparency and the first stage on which we can set forward. I wish for that and hope it can come to pass. Needless to say, I will lend every support to World Autism Month.

This goes back to the fundamental fact that this is a rights-based issue. We need to keep young people at the centre of it. This must be about them. For far too long, this conversation has not received the required airing on the floor of this House or the Lower House. I believe, however, more ladies should be involved in politics as it brings an empathy and a peace to it and brings this value system to persons with disability. We can have real, meaningful conversations and not be afraid to articulate our views or be closed down in favour of other priority issues. I thank the Leas-Chathaoirleach for allowing me to speak.

Photo of Joe O'ReillyJoe O'Reilly (Fine Gael)
Link to this: Individually | In context

I thank the Minister of State for that comprehensive and sensitive response. That concludes the statements on this matter for now and, let us hope, for all time.

Sitting suspended at 1.04 p.m. and resumed at 1.30 p.m.