Kilkenny Counciller calls the reports of Dept of Health Dossiers on Families ‘astounding’
Following on from Primetime Investigates March 2021
“I have been advocating for the right of my daughter to have the same opportunities as a non disabled person for 27 years. In that time, I have seen and heard a lot but I have to admit to being utterly astounded at the revelations in RTE’s Primetime Investigates programme”. So says Green Party Councillor Maria Dollard following the revelations in the media that dossiers were being amassed by the Department of Health litigation team on autistic children, their siblings and parents.
“I am calling on the Government to launch an external investigation into the practice of collecting information and data without consent or transparency. But we also need immediate answers to serious questions: Was this practice confined to those that had initiated legal action or did it include those who were assessed as being a legal case ‘risk’, is this practice confined to the area of autism and is it ongoing?” asks Maria.
Through her colleague, Malcolm Noonan TD, Maria has already requested a meeting with Minister Rabbitte, Minister of State for Disability. “I wanted to discuss the Autism Bill with her but now, of course, I will be asking that this potential abuse of power is included on the agenda” continues Maria.
Maria is animated and continues “I have concerns that this practice may go as far back as 1992 when Marie O’Donoghue, an advocate mother, fought for her son’s constitutional right to a primary education.”
The High Court upheld this right which, despite failed attempts by the State to appeal it, opened the door to every child in the country accessing the education they need, regardless of additional needs. The O’Donoghue case was a historic turning point for education provision in Ireland and means your school has an SEN team and SNA support should your child need it.
“All of the subsequent progress made in terms of education and health for children diagnosed with an autism spectrum condition has been through legal action” says Maria. “ Each successful case cumulatively marks another achievement. But even still, going to court is the absolute last resort for any family finding themselves in a situation where their child is not getting the health therapies or education they need.”
Speaking from personal experience as an advocate, Maria continues “Families will do everything they can to get the support they need through effective advocacy and negotiation with service providers. Where this fails, families can feel backed into a corner with no option but to take legal action; nobody does this lightly and it is a decision taken after all other options are exhausted. These families are at their most vulnerable.”
Maria shares her view that the alleged surreptitious collection and sharing of data and information, including video footage, without the permission or knowledge of the family, “strikes fear into the heart of every family who has been in this vulnerable situation. If it happened in the manner described in the Primetime documentary it is inexcusable.”
“I truly hope that parents of autistic children and autistic adults can get reassurance that this practice was not widespread. But either way all people on the spectrum and their families or representatives, need to know the truth. I will continue to advocate for the Autism Bill. At the end of the day, the only longlasting change will come from legislation and we have already waited too long for it.”
