Taoiseach requests review into Health Department’s gathering of dossiers on children with autism

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Labour leader Alan Kelly the Taoiseach’s “belated” call for a policy review will not answer the ‘why’ of the issue.

TAOISEACH MICHEÁL MARTIN has sought a policy review after an RTÉ Investigates programme revealed that the Department of Health continued to gather information about children with special educational needs and their families who were involved in legal actions against the State.

Martin said he is consulting with the Health Minister Stephen Donnelly, Minister for Children Roderic O’Gorman, Minister for Education Norma Foley, and Minister of State with responsibility for Disability Anne Rabbitte with a view to setting up a multi-disciplinary team to consider the issues raised in last night’s programme.

A spokesperson for the Taoiseach said the aim of the multi-disciplinary team is to fully understand what occurred and to ensure a proper policy framework and guidelines for the future.

“The fundamental role of the State is to advocate for the child and to ensure that the State provides services and facilities to children to enable their full development and potential to be realised,” a spokesperson for the Taoiseach said. 

 Above all the State must protect the rights of children.

“Above all, confidentiality in relation to a child’s medical and educational needs must always be protected.”

Labour leader Alan Kelly the Taoiseach’s “belated” call for a policy review will not answer the why of the issue and that he believes there are “larger cultural issues within the Department of Health at play here”. 

Kelly has called on Minister Donnelly to come before the Dáil and explain if this is a common practice carried out by the Department, and for the Data Protection Commissioner to commence an urgent investigation into “this shocking behaviour”.

He said the practice of building up dossiers on children with autism and their families “is so wrong, hurtful and suggests a culture of unfair practices within the Department, exasperated by the fact that the Department of Education seems to be colluding with Health”.

“The current Minister needs to come before the Dáil without delay to get answers for families affected.”

Ahead of the broadcast yesterday, the Department of Health issued a statement to “reassure all parents, families and interested parties” that it has never unlawfully held sensitive medical and educational information of children involved in dormant court cases.

The Department said an independent, expert review by an external senior counsel was commissioned last year after the allegations in the programme were brought to its attention.

It said the review, completed in November 2020, 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.”

‘The optics are terrible’

The Children’s Rights Alliance said it is normal in litigation for relevant information to be shared between the parties through various legal processes “but in this case, personal data was obtained from doctors, psychiatrists and therapists about children and their families without their express knowledge or consent”.

“It seems that information gathering grew legs and was potentially unlawful,” said CRA chief executive Tanya Ward.

“The optics are terrible. It will cause great distress to the children and families involved who are already exhausted having to fight at every corner for basic services. It could have a chilling effect on future human rights cases if children and families think that their very personal information will be sought and used in this way.

The other critical question is how the information continues to be maintained. It is common practice that databases are used to manage litigation. However, in this case, it seemed that staff from a whole division in the Department of Health had access to the database. On its face, it would seem unnecessary.

Ward said the government needs to conduct an independent human rights and equality audit surrounding the culture and practice of managing these cases.

There is a legal duty on all public bodies to promote equality, prevent discrimination, protect the human rights of their employees, customers and service users and everyone affected by their policies and plans. 
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The Irish Society for Autism said at least four dozen families have been affected by this issue while seeking education and support services for their children, with many families left with significant legal costs as a result.

The organisations said that parents and guardians of autistic children have a right to information and also to privacy regarding personal medical information, and that there is “ethically no justification in the Department’s handling of these cases”.

It added that the Department’s lack of transparency is “wholly unjust and further highlights the urgent need for appropriate legislation to reinforce the rights of those with autism”.

HSE Chief Paul Reid said the organisation will investigate the Department of Health’s actions, saying that confidentiality is the cornerstone of any health delivery.

“If it has been done we will get to the bottom of it,” Reid told Morning Ireland.

“From our perspective, nothing can be right about sharing information inappropriately.”

Speaking on the same programme, Children’s Ombudsman, Niall Muldoon said the actions of the Department of Health were “absolutely not” appropriate.

“It’s lawful, maybe, but is it proper and appropriate? Absolutely not,” said Muldoon, describing the actions as an “abuse of power”.

Muldoon said there are a number of questions that need to be answered, and that he “absolutely” wants this practice stopped.

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