IT IS a sobering thought that thousands of Irish citizens have been consigned to a legal limbo by a 19th century British law which classifies them as “lunatics”. This is the fate endured by those who have an acquired brain injury, an intellectual disability or who suffer from a serious mental illness that could impact on their ability to make decisions. Under the 1871 Lunacy Act they have few rights, and can be subject to the whims of institutions or official bodies in decisions relating to their lives and welfare.
Many live in devoted and loving families, but their carers are equally in a legal limbo. Once their child reaches the age of 18 the parent of a person with an intellectual disability does not have the right to make decisions, yet the person cannot do so either. In some instances the person is a Ward of Court, most frequently when large sums of money are involved, either through a family making financial provision or a compensation award for an accident. Wards of court need the permission of the court for medical procedures, the expenditure of money and even for the most mundane matters, like going on holiday.
All this will be changed with the passage of the Mental Capacity Bill, yet to be published. The Oireachtas Committee of Justice, Defence and Equality published a lengthy report on the Bill last week, including the many submissions it received and a record of its oral hearings. They make for harrowing reading.
The committee has recommended a fundamental shift in the way we think about people with intellectual disabilities, to be reflected in the new legislation. The concept of others deciding on the “best interests” of a person with disabilities should cease, it said. This should start with re-naming the Bill as the Legal Capacity Bill, and its focus should be on assisting people to make their own decisions. This should reflect the hierarchy of decisions involved – less assistance will be required by a person making a decision about what clothes to buy than about where to live or whether to have a serious operation.
Assessments of capacity should be taken out of the courts, it said, and substitute decision-making, where a nominated person can make decisions for the individual concerned, provided for only as a last resort when the persons own capacity has been severely impaired. Action on this legislation is urgent. The people at the heart of the report have waited long enough.