Inclusion Ireland, the national association for people with an intellectual disability, said today that the RTÉ Investigates programme, aired last night on Prime Time, has seriously damaged faith in the system among people with disabilities and their families.

The programme detailed how the Department of Health has been secretly using information from private doctor consultations to build and maintain dossiers on families who were involved in legal actions against the State.

Speaking this morning Lorraine Dempsey, interim CEO of Inclusion Ireland, said: “We have been contacted by many parents extremely upset and distressed at what they saw last night. We know that 50 children are affected by this investigation, but every family who has interacted with State agencies or advocated on behalf of a child with a disability is now wondering if their information has been retained, or collated. Faith in the system has been seriously damaged by the revelations.

“The Department of Health must act quickly to restore trust, by contacting all families affected by this issue as soon as possible. They must also make supports available to the families affected by this, many of whom will be understandably upset.

“We welcome that the Data Protection Commissioner has been in contact with the Department of Health already. We’re calling for a full independent investigation into this practice to establish how widespread it is, how many people are affected, and if people’s rights to privacy have been breached. There are question marks under equality laws as to whether children with autism have been targeted too.

“Finally, we need to refocus on the basics here – and ask why parents needed to take legal action against the State to vindicate the rights of their children. The State needs to focus on providing the supports and services required for children with intellectual disabilities and autism to live full and happy lives. It has to stop treating vulnerable families as hostile for seeking help.”

The RTÉ story can be found here

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