Father of autistic son calls for ‘rigorous investigation’ into medical dossier claims

A father who took a High Court case against the State in relation to his autistic son’s educational needs over ten years ago has said there needs to be a “rigorous investigation” into claims that the Department of Health maintained dossiers of sensitive information about children involved in such legal actions.

The dossiers included medical and educational information on children with autism involved in long-dormant court cases. They are believed to have been built up and maintained over a number of years by the department without the knowledge or consent of parents.

Cian and Yvonne Ó Cuanacháin were seeking to compel the State to provide 30 hours a week of ABA (applied behavioural analysis) tuition for their then six-year-old son, Seán in a High Court case in 2007.

Judge Michael Peart ruled that the Department of Education and Skills (DES) model of provision, which it had outlined to the court as “Model A”, incorporated ABA along with a number of methodologies and was therefore deemed not to be inappropriate for Seán.

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Mr Ó Cuanacháin said watching the RTÉ Investigates programme on Thursday night outline how the dossiers of sensitive information were kept was “sickening and retraumatising”, but “not surprising to anyone who ever openly challenged the DES or HSE in the courts”.

“How could anyone with responsibility for the needs of these children, be comfortable detailing their challenges without any intention of helping them and rather for the purpose of denying them supports?” he said in a statement to The Irish Times.

“We stress that we have worked with amazing clinical staff over the years but now obviously have to wonder, as every family is wondering, were we so betrayed by people who worked for our son, and if so, who betrayed us?”

Clinicians

Mr Ó Cuanacháin said clinicians or educational professionals who were “party to this sort of unethical practice” should be held to account.

“Right now we need to know who is on the list, full transparency for those families impacted and accountability in health and education for those who set up and maintained these files,” he added.

“This needs to be taken out of the hands of the departments of health and education, the Dáil needs to ensure rigorous investigation of what happened and consequences/actions to repair this.”

The Department of Health has said it never unlawfully held sensitive, medical and educational information about children involved in dormant court cases.

It said it wanted to reassure families that it had not illegally held sensitive information. It was “very conscious of the impact that these headlines will have on affected families and will engage with stakeholders on these matters in the coming days to address any concerns”.