Last week a whistle-blower in the Department of Health revealed that the Department has been secretly compiling dossiers on the families of children with Autism Spectrum Disorder (ASD) who had taken legal actions against the state. These cases were seeking access to basic rights such as seeking access to a place in a school, an assessment of needs, or a place on a school bus.
No consent or knowledge
The information was compiled by the Department without the consent or knowledge of the children or their families. The information included highly sensitive information about the children’s conditions and treatment, as well as information about the well-being and dynamics within families. On the Prime Time Investigates programme which broke the story, the whistle-blower recounted that among these files were disturbing video recordings of a child having a breakdown.
Included in the files were template letters that would seek information from medical professionals where it was explicitly stated that they should not inform the children or their parents of the request for the information. The Department clearly were trying to keep this practice out of the knowledge of those affected. A clear breach of doctor-patient confidentiality.
The purpose for this database was not to find ways to better assist the people involved or to improve policies instead, it was collated to be able to use it against the children and their families in legal actions, to limit any payments, access to services, and to deny them their rights.
Wider culture exposed
These dossiers point to a wider culture in that Department and in the Irish state. Rather than engaging with children and families with ASD diagnoses, the reflex is to take highly aggressive legal action akin to the tactics of Wall Street bankers taking on corporate rivals.
This is not the first time that the Irish state has taken this aggressive strategy against people seeking justice and access to the services they need. It is very much part of a culture of disrespect and contempt to people with disabilities and those accessing state services. This dishonourable thread can be traced back long into the history of the state, the Magdalene laundries, mother and baby homes, illegal adoptions, institutional abuse are all testament to this.
In recent years, despite promises to the contrary the Fine Gael / Independent government pursued women impacted by the cervical check scandal – many with terminal diagnoses – through expensive and stressful court cases. The state also has a record of aggressively opposing access to education for those over 18 with learning difficulties, compensation for survivors of Magdalene laundries and many other cases.
“If is legal, it is ethical”
So far, the government has attempted to brush off the issues raised, claiming that these dossiers were legal and that there are no ethical issues. The Department of Health quickly stated that the dossiers were “entirely lawful, proper and appropriate”. Its approach has been to circle the wagons and to essentially repeat the mantra that “if it is legal, it is ethical”.
After the revelations, the Taoiseach announced a review, and the Secretary General of the Department of Health will also carry out a review. However, incredibly the government has not committed to ensuring this practice is stopped!
There needs to be a genuinely independent inquiry into these practices. Instead of senior civil servants overseeing it, it needs to be overseen by representatives of parents of children with disabilities, children’s rights and disability rights campaigners and the wider working class.
The children and families effected need to have immediate access to the information that was collected about them.
Full accountability needed
We need to know who was responsible for the decisions to open these dossiers and who was responsible for their continuance.
Full information and accountability are needed in relation to the medical professionals and schools who shared this information without the consent of the families.
However, we need to go further than just pinpointing wrongdoing by some civil servants or other professionals. There needs to be accountability for the establishment political representatives that have presided over the Department of Health and other departments, and who are responsible for this aggressive approach that sees vulnerable people fought with all the resources of the state to deny them access to their rights.
The health service we need
This scandal exposes the outrageous way the capitalist establishment in Ireland views the most vulnerable sections of society. We also need a break with the logic of their system that sees vital resources rationed out and denied to people, and then attacks those who demand their rights and those of their children.
There needs to be massive investment in a one-tier top quality, public health system, free at the point of use and where all our needs are fully catered for with care and dignity, something the top civil servants and the government are demonstrably incapable of providing. Such a healthcare system should be democratically controlled and managed by healthcare workers and the wider working class, to ensure real accountability. This will ensure that children and their families never again have to take legal action to access the basic services that they need.