Department gathered information on children with autism without parents' knowledge

According to RTÉ Investigates, the Department of Health has been using confidential information to build dossiers on children with autism who were involved in legal actions against the State.

The Department of Health has built dossiers on almost 50 children with autism who were involved in legal actions against the State, a whistleblower has claimed.

The dossiers include sensitive medical and educational information about the children who were involved in historic legal actions against the State.

The dossiers were built and maintained over a number of years without the knowledge or consent of their parents, with at least 48 families affected by the practice.

The practice has come to light after a whistleblower who works at the Department of Health approached RTÉ. The details were revealed in an RTÉ Investigates documentary which aired on Thursday.

The cases involve a number of legal actions, initiated over a decade ago, seeking the provision of education for autistic children.

According to RTÉ Investigates, there was no indication from the families or their solicitors that proceedings were likely to be reactivated when background updates were sought directly from medical professionals.

The information in the dossiers was shared and gathered with the goal of aiding the Department of Health with a background legal strategy, such as in determining when it would be a good time to approach parents to settle or withdraw cases.

The reports include details of specialist service provision, the wellbeing and mindset of parents as they cope with the needs of their child, and extensive and involved material sourced directly from consultations with psychiatrists and other medical professionals.

Families were unaware that what they disclosed to medical staff, in order to get treatment and support for their autistic child, was being passed on to the Department.

The files record issues related to children named in the court proceedings, as well as their parents and siblings. They record details such as marital breakdowns among parents and addictions in the home.

Picture: iStock

The whistleblower said one case involved the sharing of a video of a child in a distressed state. There were also updates from local care, community mental health and support services.

The Department made it explicitly clear that families and their legal representation were to remain in the dark that this information was being gathered.

One letter template seen by RTÉ Investigates said: "This is not a request to contact any of the plaintiffs involved in the litigation or their families or legal advisors. Indeed we would request you not do so in connection with this request."

The Department of Health said in a statement the information sharing discovered by the documentary team was "normal practice" in circumstances where different State bodies shared information when they were involved in litigation together.

Data protection expert, Daragh O'Brien, said by not informing the families of the information gathering, there appeared to be a breach of domestic and EU law as well as their fundamental rights.

A solicitor specialising in children's rights said she believed the practice "is a serious ethical breach".

The whistleblower made a protected disclosure to his superiors in 2020 and subsequently told RTÉ Investigates the practice is known to have affected at least four dozen families who had initiated High Court proceedings in the early to mid-2000s, seeking appropriate and worthwhile education and support services for their child with autism.

Rulings at the time forced the governments of the day to improve the nature and availability of educational services for children with autism.

In cases where the Department of Education was listed as a co-defendant, annual school reports from class teachers were supplied in their original form to the Department of Health.

These were kept on electronic filing systems and summarised on running spreadsheets. Both the spreadsheets and original files could be accessed, searched and viewed by any persons working in the Department's Social Care division.

In a statement issued on Thursday evening, the Department of Health said it commissioned an independent review into the matters raised in the documentary. It said no breach of the Data Protection Acts was identified.

The Department said, "The Department of Health would like to reassure all parents, families and interested parties that the Department has never unlawfully held sensitive medical and educational information of children involved in dormant court cases.

"The Department’s mission is to improve the health and wellbeing of people in Ireland and to protect the most vulnerable in society. The Department is very conscious of the impact that these headlines will have on affected families and will engage with stakeholders on these matters in the coming days to address any concerns.

"It is normal practice for defendants to litigation to gather and maintain appropriate information in order to obtain legal advice and/or defend the proceedings. This is necessary to protect the public interest and is a normal practice for the management of litigation.

"The subject matter of this specific RTÉ investigation was brought to the Department's attention last year. The Department moved quickly to investigate these matters and commissioned an independent, expert review by an external Senior Counsel. This review was completed in November 2020.

"No breach of the Data Protection Acts was identified by the review. The review found that information contained on relevant files managed by the Department is consistent with, and typical of, the sort of information which arises in such litigation.

"The examination also found no basis to suggest wrongdoing arising from the information contained."