By Michelle Devane, PA
Claims that the Department of Health has been secretly building information on children with autism have been described in the Dáil as “absolutely shocking”.
Sinn Féin’s Pearse Doherty said the department’s actions were “at the very least invasive and disproportionate” but in reality “dishonest, totally unethical and possibly illegal”.
He called for an independent investigation into the matter to be carried out “urgently”.
An RTÉ Investigates programme, to be aired on Thursday evening, claims the Department of Health has been secretly using information from private doctor consultations to create dossiers on children with autism who were involved in legal actions against the State without their parents’ knowledge.
It highlights an attitude of suspicion and contempt towards the families that is simply not justifiable
Mr Doherty said: “The Department of Health had been gathering information on them and on their children, for many, many years, specifically in order to defend legal cases which these families considered bringing in order to vindicate the rights of their children’s access to services.
“This is truly shocking, absolutely shocking that this is going on, that this was going on, and it highlights an attitude of suspicion and contempt towards the families that is simply not justifiable.”
'Dig up dirt'
The Donegal TD said the information on file in the department’s database included medical and personal information, which “any right-thinking person would believe that this was covered by doctor-patient confidentiality”.
“Instead of assisting families in accessing proper services for children with a disability or a learning difficulty, what we had instead was the Department of Health playing private investigators, trying to dig up dirt on parents who’ve already been through the mill,” Mr Doherty claimed.
“It is at the very least invasive and disproportionate. In reality, it is dishonest, it is totally unethical and possibly illegal, and it represents a monumental breach of trust.”
He added that it had clearly been a practice that had been going on for years.
Personally I have no recollection of being briefed on this
Asked whether he was aware of the Department of Health’s actions, Tánaiste Leo Varadkar said he had “no recollection” about the matter and described what has been recounted as “worrying”.
“I understand it’s only from reading the RTÉ website this morning that a protected disclosure on the matter was made in 2020,” Mr Varadkar told the Dáil.
“Personally I have no recollection of being briefed on this.
“You mentioned that I am a former minister for health. That was four or five years ago for a year and a half, I don’t have any personal recollection of this at all.”
The Fine Gael leader added that he would “double check” any records regarding the matter.
'Gross breach of trust'
Inclusion Ireland has described the claims as a “gross breach of trust”, and called for the families affected to be notified.
Lorraine Dempsey, interim chief executive of Inclusion Ireland, said: “While we await the full details to be broadcast tonight, the details we’ve seen so far this morning constitute a gross breach of trust for families and autistic children.
“It is highly disturbing to think that sensitive information is being collated in this manner – when families are at a low ebb and seeking help from the State, to be potentially weaponised later during legal disputes.
“How can families have confidence in a system that exploits their vulnerability in this way? How can they trust a system that shares confidential medical information without their consent or knowledge? The families affected must be notified – their personal data is their own.
“We need to know how widespread this practise is – does it extend further in the Department of Health? And the Department of Education? Is this standard practice in State bodies? We need a fully transparent investigation into this issue by the Data Protection Commissioner – not least for the families affected.”
