Health Service actions 'will cause great distress to the children and families' says Children's Rights Alliance.
Minister for Disability Anne Rabbitte has an opportunity to review and reform how children with disabilities are treated in the State, according to the Children's Rights Alliance (CRA).
Founded in 1995, CRA unites more than 120 members, working together to make Ireland one of the best places in the world to be a child.
Commenting on Thursday's RTE's Prime Time Investigates which revealed the Department of Health built secret dossiers on children with autism, Tanya Ward, CRA Chief Executive said: "It appears from the Prime Time Programme that there are serious questions about why information continued to be gathered about children and their families long after their cases against the State were dormant.
"It is normal in litigation that relevant information is shared between the parties through various legal processes. But in this case, personal data was obtained from doctors, psychiatrists and therapists about children and their families without their express knowledge or consent. It seems that information gathering grew legs and was potentially unlawful.
"The optics are terrible. It will cause great distress to the children and families involved who are already exhausted having to fight at every corner for basic services. It could have a chilling effect on future human rights cases if children and families think that their very personal information will be sought and used in this way.
"The other critical question is how the information continues to be maintained. It is common practice that databases are used to manage litigation. However, in this case, it seemed that staff from a whole division in the Department of Health had access to the database. On its face, it would seem unnecessary," said Ms Ward.
Ms Ward said the the Data Protection Commissioner would examine the data protection issues.
She added: "The children and families will take their own actions on enforcement of the law. At the same time, the Government needs to conduct an independent human rights and equality audit surrounding the culture and practice of managing these cases.
"There is a legal duty on all public bodies to promote equality, prevent discrimination, protect the human rights of their employees, customers and service users and everyone affected by their policies and plans (the Public Sector Duty). These children and families have a right to privacy and some are very vulnerable.
"We now have a Minister for Disability, Deputy Anne Rabbitte and 'Disability' has now moved into the expanded Department of Children, Equality, Disability, Integration and Youth. This in an ideal opportunity to review and reform how children with disabilities are treated in this State and to ensure that their rights are respected, protected and fulfilled, said Ms Ward.