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Children’s Ombudsman Niall Muldoon has said that RTÉ Investigates’ revelations that the Department of Health has been secretly using information from private medical practices to compile and maintain files on children with autism who participated in legal action against he was very enraged by the state.
Speaking on RTÉ’s Morning Ireland, he described those involved as “the most vulnerable children in Ireland” and said their families are doing everything possible to ensure that these children have their rights.
They sued the government for that reason, he said, because the government had not granted them those rights in the first place.
“We need to ask the government and the Taoiseach ‘who runs the government?'” Muldoon said.
“What kind of state are we trying to create here? We are trying to provide a state in which the rights of the child are protected and promoted at all times … as recently as yesterday there were statements that said it was normal practice.” .
“It’s legal, maybe, but is it appropriate and appropriate? Absolutely not.”
Muldoon said it is not a fair playing field and family members who take lawsuits cannot knock on the door of a minister or the secretary general’s GP and request to see their medical records.
It is an “abuse of power” in relation to families and children who are “extremely vulnerable,” he said.
“We also have to ask ourselves the question: Has this happened with other children where families have sued in relation to the needs assessment, perhaps, or school sites or maternity issues? Is this a common practice?”
Muldoon said he “absolutely” wants this practice to stop.
He questioned whether the Health Department has made “immediate contact” with the families involved, because hundreds will be worried about being caught up in this.
Mr. Muldoon said that we also need to take a look and see if this has been happening in other lawsuits involving children.
He said we have to ask who asked for the information and who gave the information, and “those answers are crucial.”
Children’s Ombudsman Niall Muldoon says he “absolutely” wants the government’s practice of creating secret files on children with autism to stop. pic.twitter.com/exq2oaEQTF
– RTÉ News (@rtenews) March 26, 2021
Health Service Executive Director Paul Reid said everyone should always be able to trust the health system.
Also speaking on Morning Ireland, he said that confidentiality is the cornerstone of any health service delivery and that the HSE has sought more information on the issues highlighted by RTÉ Investigates and will follow up.
“From our perspective, nothing can be right about sharing information inappropriately,” Reid said.
He said that the HSE would not be sharing any information inappropriately and that according to them, everything that was shared had a legal basis and was not breaking patient confidentiality.
The whistleblower exposing the secret files of the Department of Health
The Department of Health developed secret files on children with autism
Why Secret Health Department Records Are a Breach of Trust for Parents
This is just another breach of trust that families in our community have experienced.
Deputy Executive Director of autism awareness charity ASIAm, Fiona Ferris, said there are many concerns raised in last night’s Investigates RTÉ report.
Speaking about the same program, he said that there is “a lot of discomfort and confusion on the part of the families of our community.”
Ferris believes the disclosures will raise concern for these families who are now questioning the trust and relationship they may have with those who have positioned themselves to support them.
She said: “How was this allowed to happen? Will families be informed of how their data has been used? And the biggest concern we have is the perpetuation of this attitude and culture towards people with disabilities in Ireland.”
“This is just another breach of trust that families in our community have experienced.”
He said that questions now need to be asked externally and internally about how these processes were allowed to take place.
While welcoming the legal review, Ms. Ferris stated that there should also be a review of culture and ethics.
Sinn Féin health spokesman David Cullinane accused the Health Department of a “monumental breach of trust” following the revelations.
Speaking in Morning Ireland, Mr. Cullinane said that the research findings are “really shocking” and disturbing and that these issues need to be properly investigated.
“There must be a full and proper investigation,” he said.
Mr. Cullinane said that instead of helping families, the department was “snooping” on these children and raising legal, moral and ethical issues.
“Regardless of the legal issues and whether there were violations, it was unethical and completely wrong, and having very sensitive information and psychiatric information on the child,” he said.
He said Sinn Féin has already called for an investigation and also wants Acting Health Department Secretary General Robert Watt to appear before the Oireachtas Health Committee.
“It is appropriate to hear from the Department and Oireachtas members asking questions that families will have.”
He said he does not “buy justification” from the Health Department.
“We want to know what happened, is this practice still ongoing, is this information still being compiled? Why was this done?”
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