Call for information on the records collected on children with autism



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There has been a call for an investigation into the Department of Health’s practice of secretly collecting information from private medical practices to create files on children with autism involved in legal action against the state.

Sinn Féin finance spokesman Pearse Doherty said the investigation should be “similar in scope and duration to Scally’s research on the cervical cancer screening program” and should investigate the roles of the Departments of Health and Education and the HSE.

Doherty spoke before an RTÉ Investigates program that will air Thursday following a protected disclosure last year about files that included medical and educational information from children involved in long-dormant court cases, collected without the knowledge or consent of the fathers.

The detailed information came directly from confidential consultations the children and their families had with doctors and other professionals, who were instructed by the department not to tell their parents.

Mr. Doherty said what happened is “dishonest, totally unethical and possibly illegal and represents a monumental breach of trust.”

Raising the issue during the Leaders’ Questions on the Dáil, the Donegal TD said this practice has been going on for at least a decade and “highlights an attitude of suspicion and contempt towards families that is simply unjustifiable.

“This information on file in the department’s database includes detailed personal and medical information, which any right-thinking person would believe is covered by doctor-patient confidentiality.”

He said that “instead of helping families and accessing adequate services for children with disabilities or learning difficulties, what we had was that the Department of Health hired private investigators, trying to unearth the parents who had already passed through the mill.” .

The whistleblower in question “raised concerns with his heads in the department,” he said and asked Tánaiste Leo Varadkar which minister was responsible at the time and if they were informed of the disclosure by the whistleblower.

Mr. Varadkar said the issue was “concerning” and “appears to be a very serious matter”. He said it “relates to very sensitive and very private matters about people with disabilities and their families.”

El Tánaiste, who previously served as health minister, said he read about the issue online and did not know all the facts. He said he was a minister “four or five years ago for a year and a half. I have no personal recollection of this at all.

He added that disability was a matter delegated (to a minister of state) “but he would have to re-verify the records in this regard.”

Mr. Doherty said that the Tánaiste’s response was “inadequate” and that this practice had been going on for at least a decade and the Health Department “says it is normal practice.

“How could it be normal practice for psychiatric reports to share intimate details of the family situation of a child with autism with the Health Department?”

How could the department “ask for that to be shared without parental consent and without parental knowledge? How can a normal practice with a child in his most vulnerable situation be for a video? [of that child] that will be held in the Department of Health and anyone within that department will be able to access it. “

Mr. Varadkar acknowledged that “my answer is not adequate, because I do not know the facts of this. And as I say, I became aware of this matter, reading about it on the RTÉ website this morning ”.

He added: “I am not aware of the facts at this stage, and it would be inappropriate for me to offer further comment, as I have not heard from the Minister of Health or the Minister with responsibility for disability from the department at this stage. . “

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