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Dáil
‹ Ceisteanna ó Cheannairí - Leaders' Questions

RTÉ Investigates disability records

Summary

Pearse Doherty raises RTÉ Investigates revelations that health records and videos relating to a child with autism and other disabilities were shared without parental consent. The Tánaiste says he only learned of it that morning, agrees it appears serious, and says the Department of Health and the Minister will need to respond.

Feicimid go bhfuil sonraí foilsithe ag "RTÉ Investigates" maidir le bailiúchán sonraithe de chuid na Roinne Sláinte ar pháiste a raibh uathachas agus míchumais fhoghlamtha eile orthu le smál a chur orthu agus ar a gcuid teaghlach. Bhí na teaghlaigh sin ag troid trí na cúirteanna agus le modhanna eile chun seirbhísí mar is ceart a fháil dá gcuid páistí. Tá an scéal seo scanrúil agus mí-eiticiúil. Is náire é gur tharla sé agus tá ceisteanna le freagairt ag an Rialtas maidir leis. Cad a bhí ar eolas aige agus cén uair?

This morning the "RTÉ Investigates" programme published shocking revelations stemming from the disclosures of a whistleblower in the Department of Health. This relates to children with autism whose families have fought to ensure their children got proper access to services to which they should have been entitled. Unbeknown to these families and the children, the Department of Health had been gathering information on them for many years, specifically to defend legal cases the families considered bringing to vindicate the rights of the children's access to services.

It is truly and absolutely shocking that this is and was going on. It highlights an attitude of suspicion and contempt towards families that is simply unjustifiable. This information on file in the Department's database includes detailed medical and personal information that any right-thinking person would believe is covered by doctor-patient confidentiality. Instead of assisting families in accessing proper services for children with a disability or a learning difficulty, we had instead the Department of Health playing private investigator, trying to dig up dirt on parents who had already been through the mill. The information that was gathered is clearly very sensitive, intimate and, very often, completely unrelated to any litigation. It is at the very least invasive and disproportionate. In reality it is dishonest, totally unethical and possibly illegal. It represents a monumental breach of trust.

The database in which this information is stored, despite its incredible sensitivity, is available to a whole division in the Department of Health for access. It includes items such as reports from schools, details of psychiatric consultations involving children, and videos of children in a distressed state. It is absolutely alarming that personal information, which parents gave in confidence to their child's doctor at a time of family crisis, would be collated by the Department of Health in this manner to be used against the families as a tactic in litigation to prevent families getting the additional supports they sought.

The severity of this is, quite frankly, unquantifiable. There are many questions we all need answered. We know the whistleblower in question raised concerns with bosses in the Department of Health. Does the Tánaiste know when that was? Who was the Minister with responsibility for health at the time? Was that Minister informed of the fact a protected disclosure was made by the whistleblower last year?

This practice has clearly gone on for many years in the Department of Health. As a former Minister, did the Tánaiste know this practice was ongoing and the Department was gathering this type of sensitive information, which it had no right to access in the first place? It told doctors not to tell families that this information was being provided to the Department. Was the Tánaiste aware of this practice when he was Taoiseach? Was he made aware of it? Will the internal examination by the Department of Health into this practice be made public? Is this practice of gathering private information, none of which could be considered relevant to possible litigation, still ongoing in the Department?

Comment on this
Leo Varadkar The Tánaiste Fine Gael

I thank the Deputy for raising this matter, which I read about this morning on the RTÉ news website. What is recounted on the website this morning is worrying and, as the Deputy notes, it relates to very sensitive and private matters affecting individuals with disabilities and their families. I do not know all the facts but I will watch the "RTÉ Investigates" programme tonight. I am sure the Department of Health will want to make a statement on the matter, if it has not done so already, and it will want to reply to any questions or concerns raised.

I understand only from reading the RTÉ website this morning that a protected disclosure was made on the matter in 2020. Personally, I have no recollection of being briefed on this. The Deputy mentioned that I am a former Minister for Health, but that was four or five years ago for a period of a year and a half and I do not have any personal recollection of this at all. Disability was a delegated matter, as the Deputy knows. I would have to double-check any records in that regard but I have no personal recollection of it at the moment.

Comment on this

This practice has been ongoing for well over a decade and the Tánaiste's response is inadequate. The Department of Health has stated this is normal practice. How could it be normal practice for psychiatric reports with intimate details of a family's situation where a child has autism to be shared with the Department of Health without the consent or knowledge of the parents? How could it be normal practice for a video of a child in a most vulnerable position to be held in the Department of Health to be accessed by any individual in the Department? This simply cannot stand.

I have asked a number of questions about the publication of the internal investigation but there is a need for an independent investigation of the ethical and legal rationale for all of this. It needs to be undertaken urgently and it should not drag on. Does the Tánaiste agree that an inquiry similar in scope and duration to the Scally inquiry into the CervicalCheck screening programme is now needed, encompassing both the Department of Health, the Department of Education and the HSE? It is clear this must be properly investigated.

Comment on this
Leo Varadkar The Tánaiste Fine Gael

I accept what the Deputy says; my response is inadequate, because I do not know the facts of this. Like I say, I became aware of the matter by reading about it on the RTÉ website this morning. It appears to be a serious matter and questions will be asked and answered. I am not aware of the facts at this stage and it would be inappropriate for me to offer further comment, having not heard from the Minister for Health, the Minister of State with responsibility for disabilities or the Department at this stage. I agree this appears to be a very serious matter. I will be watching the programme tonight to find out more.

Comment on this