Ireland is in the process of changing its law around how people make decisions.
At the moment we have an old law in place called the Lunacy Act under which people can be made Ward of Court and lose all of their rights to make decisions for themselves.
Inclusion Ireland has campaigned for many years to have the law changed and for people with capacity issues to be supported in making decisions.
These decisions could be about money, medical treatment, where a person lives or goes to work, travelling or voting.
Ireland is introducing a new law called Assisted Decision-Making.
This will improve things a lot for people with disabilities, their families and people who work in the area.
It will make it clearer who can and cannot make decisions and it will ensure that people with disabilities have a right to access support of their choosing in making decisions.
For those who have campaigned for modern capacity law through the years, there was an important milestone recently. The Assisted Decision-Making (Capacity) Bill 2013 progressed through select committee stage – which is the third stage in a five-stage process of making law. Stages 4 and 5, called report and final stage respectively, are normally seen as procedural and there is genuine optimism that the end of the road is in sight.
It is fair to say that there was a sense of euphoria at the committee sitting at Leinster House on Wednesday, June 17th, not least because a mammoth 417 amendments were tabled, discussed and voted on. The number of amendments demonstrated the seriousness of this legislation and the extent of the consultation on it.
Inclusion Ireland made many observations and submissions and were happy to see that very many of these asks were taken on board.
If enacted before the end of the year, it will mark the end of a two-year process, but that does not even represent the tip of the iceberg. Minister of State Kathleen Lynch remarked how she had spent two decades, both campaigning for change in opposition, and progressing the legislation as a junior minister.
Inclusion Ireland has been campaigning for a similar length of time for reform in this area. The legislation that we have at present is not fit for purpose in a modern republic.
I was employed by Inclusion Ireland in 2006 on a project called ‘Who Decides & How’ to provide information and training, and to campaign for changes in capacity law. The law at this time – and today until this legislation is passed – was the Lunacy Regulation Act of 1871.
This relic of Victorian rule prevails today with over 100 people per annum with intellectual disabilities alone brought into a system called “Ward of Court”, typically because of inheritance of money, a settlement of a legal action, to facilitate the sale of a property or an injection of money into their lives.
The impact of being made a Ward of Court is huge, a person sees not only a restriction on their financial affairs but a restriction on travel, marriage and relationships, where a person lives and medical decision-making.
By any international human rights standards, and certainly by the United Nations Convention on the Rights of Persons with Disabilities, the Lunacy Act does not pass muster.
It has been almost a decade since I began working in this area and although there have been forays into law reform, the landscape is the same and although highly optimistic that we will get this Assisted Decision-Making Bill over the line, we have seen some false dawns in the past.
A genuine catalyst for reforming the law in this area began in 2006, when the Law Reform Commission followed their report on the elderly with a report into vulnerable adults. The Commission recommended that our Lunacy Act, the system responsible for creating Ward of Court and all the restriction that goes with that system, be repealed.
The Commission also recommended that a ‘functional’ approach to decision making, one that looked at the particular decision at the particular time, be used rather than the ‘status’ approach of Wardship which declared a person incapable of all decisions and changed their status to lunatic, idiot or of unsound mind.
In the years that followed there has been a cascade of events that have led us to this point and Inclusion Ireland has been central to a lot of this work.
In 2007, Inclusion Ireland arranged for Michael Bach from British Columbia in Canada to speak at a seminar. Professor Bach spoke of Supported Decision Making, the ‘right to decide’ of those who can only express their will and intent, and the concept of personhood being articulated by other people who were sufficiently knowledgeable to understand a person’s unique communication.
All of these concepts, while operational in British Columbia, were alien to an Irish audience where the 19th Century law prevailed as the only form of ‘adult guardianship’ and assisting or supporting decision-making was not available on a legislative basis.
In the same year Senator Joe O’Toole and Senator Mary Henry sponsored a Private Members Bill on Mental Capacity & Guardianship, borrowing heavily from the Law Reform Commission report. This Bill lapsed shortly after initiation in the Seanad, as the Government intended to initiate legislation on the same topic and did so in 2008. The focus of the law at this time was very much on substitute decision-making and guardianship, and while Inclusion Ireland welcomed the Bill, we stated at the time that the Bill did not go far enough.
At a conference in 2009, Inclusion Ireland commented that the focus of any capacity law should be on legal capacity and not mental capacity – we argued for the removal of terminology such as care, protection, best interest, guardianship and other paternalistic language. It was a source of major frustration and disappointment that following the 2011 General Election, the Bill lapsed as a new government, with new ideas, came into existence promising to “introduce a Mental Capacity Bill that is in line with the UN Convention on the Rights of Persons with Disabilities”.
And in July 2013, the Assisted Decision Making (Capacity) Bill was introduced, having been championed by Minister for Justice Alan Shatter, Minister of State Kathleen Lynch and Chair of the Justice Committee David Stanton.
A significant consultation process commenced, almost two years passed and a genuine concern emerged that this Bill could go the way of the 2008 Bill and slip off the table quietly in the build up to the next General Election.
Inclusion Ireland organised a campaign to highlight the need to legislate, called ‘Fool Me Once’, using April Fool’s Day to draw attention to the offensive language in the Lunacy Act. We were heartened by David Stanton’s comments on that day that the Bill’s return was imminent, and so it proved.
The Bill, along with 417 amendments was before the Justice Committee and what was clear was that a significant number of amendments put forward by Inclusion Ireland and others had been taken on board.
Although we have reached an exciting and pivotal point in the progress of law in this area, we are not yet at the finish line. There are still elements of the Bill that are not perfect, with a concentration on mental or decision-making capacity rather than legal capacity prevalent throughout.
Inclusion Ireland remain concerned that there is no legal aid process in place for families or persons who wish to access decision-making representation agreements in court, although the Minister did commit to revisiting this matter. Inclusion Ireland welcomed the expression that there would be involvement of the National Disability Authority and Citizen’s Information Board in developing codes of practice in the Act. However, we will be advocating for the involvement of people with intellectual disabilities and other experts through experience in drawing up these guidelines.
What is clear is that the Assisted Decision Making Bill as amended will mark the end to a draconian Lunacy and Ward of Court system that caused misery for thousands of affected Irish people.
What this Act will bring will be a statement of the rights of people with intellectual disabilities to make their own decisions and a legal entitlement to the supports and assistance they need. There will be an end to the informal and unregulated dilution or removal of persons with disabilities’ decision-making rights. Ireland can make great strides towards ratification of the UN Convention.
For people with disabilities, their families and people who work with them it will mean that there is finally an answer to the question ‘Who decides, and how?’ After 144 years of the Lunacy Act, there is nobody who can say that it is not before time.