With a recent RTE Primetime investigation highlighting discrepancies in the care of those with intellectual disabilities, Megan Fanning examines whether enough is being done to protect some of the most vulnerable in society
Recently an issue highlighted by RTE Primetime evoked concerns on current legislation and its ability to protect individuals of the state. RTE Primetime investigated Aras Attracta, a care centre in County Mayo, due to reports from whistleblowers denying the significant improvements certified by a second-round HIQA report on the centre’s compliance with regulation standards.
This particular centre had seven female residents with the programme focusing on three in particular. RTE Primetime witnessed the maltreatment of the most vulnerable in what should be considered their home. The residents are seen to be largely confined to the one area for significant parts of the day with punishment and abusive threats given to them should they try to move.
This Primetime report draws attention to the need to reform Irish legislation in relation to those with intellectual disability and confirms the inadequacy of the regulation currently in place, posing the question, ‘Where is the governance?’
Government after government have failed to reform the current system. In Fine Gael and Labour’s 2011 programme for government it, like many of its preceding governments, stated that it would “close unsuitable psychiatric institutions” and would “develop specific strategies for… those with intellectual disabilities.” The Government committed to repealing the Lunacy Regulation (Ireland) Act (1871) which is an “all or nothing” option. The Act disempowers those with intellectual disabilities and is a declaration of incapacity.
Regardless of the severity of the individual’s disability, the individual’s rights to property, to marriage, to testify in a court case are removed and all legal and health related decision-making capacity is removed from the individual. The person deemed incapable becomes a ‘ward of court’ – their affairs are managed by a committee with supervision from the High Court. The Act removes an individual’s right to autonomy over their own lives and despite its age and faults it still holds in Ireland.
The Act does not take into account the spectrum of disabilities and paints scenarios as black and white. Over 70% of individuals with intellectual disabilities have a mild to moderate disability and are capable of making decisions but the Act does not distinguish individual case by individual case. It breeds a system of archaic paternalism that disallows for the progression of infrastructure for those with intellectual disabilities; despite its intentions to protect it only furthers discrimination. The sister of one of the residents in care at Aras Attracta, Sheila Garvin, stated in the programme that there is a line you do not cross, where you infringe on someone’s dignity and human rights. Dr. Brendan Kelly, an Associate Clinical Professor of Psychiatry in UCD and a Consultant Psychiatrist in the Mater Hospital, has said that the Lunacy Act is “no longer fit for purpose.” When asked whether the Act has any strengths to bring forward, Dr. Kelly says that there are none and that there needs to be a “root-and-branch reform of the system.”
The Lunacy Act disregards two of the greatest UN Conventions – the UN Convention on the Rights of Persons with Disabilities and the UN Convention Against Torture. The system that our state currently has in place dismisses those who have suffered abuse through cases such as Aras Attracta. These victims, as a result of the Lunacy Act, will not be validated as witnesses to the events that occurred, regardless of the severity of their disability.
There has been a move to introduce reform in this area and this has come in the shape of the Assisted Decision-Making (Capacity) Bill (2013) that contains proposals that provide a statutory framework that supports decision-making by those with intellectual disabilities. In an article published in the Irish Times in October 2013, Dr. Kelly said that it was an “exciting and progressive initiative which offers real hope for the empowerment of thousands of individuals.” This Bill, if passed, would replace the ‘ward of court’ and provide for a range of legal options and intervention levels to support the individual’s decision making. The Capacity Bill would see the system changing from the previous “all or nothing” approach to a system that evaluates the various options based on a case-by-case scenario where there would be three statuses based on assessment of the severity of a person’s disability – Assisted Decision Maker; Supported Decision Maker and Facilitated Decision Maker.
The Capacity Bill would also progress in ratifying the UN Conventions previously neglected by the Lunacy Act. Dr. Kelly agrees that the Capacity Bill is “an important step forward, if revised somewhat and then efficiently implemented.” Dr. Kelly applauds the Bill in saying that it places a “strong emphasis” on the “will and preferences” of those with an intellectual disability and creates a system that provides for “provision for automatic periodic review” which the Lunacy Act did not.
The Aras Attracta report confirms the inadequacy of regulation of services that the system has in place and highlights the lack of accountability in its governance. The Capacity Bill will better protect those vulnerable as opposed to the Lunacy Regulation Act but yet it stills has its faults, the bill fails to introduce a system that will protect the lack of freedom in residential services and this is a violation of Ireland’s obligation under the European Convention on Human Rights.