Secret files could damage parents’ trust in system

THE revelation last week that the Department of Health had compiled secret dossiers on children with autism should shock this country to its core.

The report, as outlined by investigative journalist Conor Ryan on RTÉ, revealed that the Department had sought, and received, information from a number of medical practitioners, about these children and their families.

The story had come by way of whistleblower Shane Corr who said he could not, in all conscience, fail to pass on what he had discovered.

The dossiers involved what was described as ‘long dormant’ cases which the families had originally instigated in an attempt to get suitable education for their special needs children.

There were so many elements of this story which were abhorrent.

These cases were over a decade old and there was no indication that they were going to be reignited.

The information was sought from medics – including psychologists – on the explicit condition that neither the children, nor their families or their solicitors, would be told.

Some of the information involved very personal details about the families, including details of marital break-ups and alcoholism.

The dossiers also included reports from social workers and other key professionals. And in one instance, a video of a child, described by Mr Corr as having a ‘meltdown’ in a treatment session, was put on file and could be accessed by others.

In fact, once received, all the information was accessible by several people within the Department of Health. Information from other government departments was also provided, including school reports from the Department of Education, and other information from the HSE.

In response, the Department of Health has said this information compiling was ‘normal practice’ in such cases. That phrase has, unsurprisingly, raised a few eyebrows.

There is no doubt that legal teams representing government departments in litigation cases are entitled to seek information to bolster their defences.

These cases are being funded by the taxpayer, as are any ensuing settlements and/or legal fees.

But there is already a robust process in place for such information gathering – which  is usually confined to ‘live’ cases. And such information gathering is not carried out in a surreptitious way.

The cases in the RTÉ report were all over 10 years old, and the possession of this highly sensitive and personal information in a government department may have never come to light, was it not for this incredibly brave whistleblower.

Furthermore, it was not an insignificant number of cases – the journalist was made aware of at least 48 such families – whose details were being kept on file.

A subsequent independent review ordered by the Department of Health, and conducted by a barrister, concluded that the compilation of such information had been ‘entirely lawful, proper and appropriate’.

And while there are now varying opinions on whether the files contravene data protection laws, they must surely contravene ethics laws.

Is it morally right to secretly compile such highly sensitive and personal information on Irish citizens, who are just trying to do right by their vulnerable and disadvantaged children?

Some cynics may argue that where expensive litigation is concerned, morality is down the priority list.

A number of legal observers appeared, over the weekend, to start shifting the blame to the medical practitioners who had given these sensitive details about their clients to the Department of Health.

But it should not be forgotten that many of those very practitioners have professional relationships with the Department and may have felt somewhat compromised by the heavy-handed wording of the letters seeking the information.

And apart from the morality of the practice, what about the breach of trust between the medical professionals and the parents of these children?

If a parent cannot trust the integrity of the patient/client relationship, then what is the point in attending those sessions in the future?

The various government departments now mired in this unsavoury tale may have put the protection of taxpayers’ money at the core of this practice. But what priority were they giving to morality, ethics and the privacy and dignity of these vulnerable children and parents?

The Department of Health’s rush to justify its position was probably the final insult to these families.