A Government Minister has said the Department of Health policy of creating and keeping dossiers of sensitive information on children with autism involved in legal actions against the State must stop now.
Minister of State for Disability Anne Rabbitte said the system lacks transparency. "It appears shady, even if it is not the case. The State should never ever give the impression of operating in any kind of cloak and dagger way."
She also said the department secretary general Robert Watt had informed her that “it is the intention” to publish the review by the independent senior counsel of the policy. “They are just receiving legal advice on it at the moment,” said Ms Rabbitte.
The report, commissioned earlier last year and completed in November at a cost of €10,000, had not identified any breaches of the data protection laws in the gathering and maintenance of information including education and psychological reports on children and personal issues within the family.
Ms Rabbitte was speaking during a Seanad debate on the revelations in the RTÉ Investigates documentary, following a protected disclosure by a senior department official on the practice.
She said she could not believe the policy had been in place for over a decade and questioned why the Minister for Health was not informed that the report had been received or of its findings.
“I simply cannot stand over this particular system. It needs to stop now, and a new, more transparent method of managing such legal cases needs to be developed. Only then will trust be restored.”
She said: “we must acknowledge that while what happened may have been lawful, does not mean it was right. Driving without a seat belt used to be lawful, it doesn’t mean it was ever right.”
In an impassioned speech Independent Senator Lynn Ruane said her daughter who has autism, "when she saw all this flash up last week, texted me asking was all her stuff involved and I said, 'no, we did not go to court'."
The Trinity College Senator, who sought her daughter’s permission to speak publicly about her story, said that before her diagnosis and in desperation to find out what was wrong after two years on a waiting list, “you say to your child ‘whatever it is, tell them everything, even if it makes me look bad and our home look bad, so that you can get to the bottom of what is going on” and to “trust them” because confidentiality is key to the medical profession.
“I am struck by the fact that when you do not manage to have all those needs met, you go to court and the very thing that you told your child to do, and you have to do, which is tell them everything, is then used against you.”
Right a wrong
Fine Gael Senator Micheál Carrigy also spoke of his experience “as a parent who has acute knowledge of the system, the lack of services within it and the weekly, monthly and yearly fight for diagnoses to access services”.
He said the State needs to apologise and to right a wrong. He said he was sickened to watch how the department gathered information, including details of marriage difficulties and possible addictions, to find times when they were most vulnerable to get them to withdraw or settle cases where parents were seeking the fundamental right to education for their children.
Mr Carrigy has drafted legislation which aims to provide “equality of opportunity and treatment for persons with autism”. He appealed to the Minister and her officials to ensure it does “not hit the brick wall the State builds to block fundamental rights for people with autism”.