Recently I have been travelling the country for work, meeting many different groups of people including people with intellectual disabilities, families, carers, employees and people who provide all kinds of services. Various topics have been on the agenda, including money and finances, social inclusion, moving on from congregated settings, medical decisions, relationships or making a will.
Inevitably and unfailingly, the conversation comes round to the Assisted Decision-Making (Capacity) Bill 2013, and this demonstrates either the sheer relevance of the legislation or my predilection towards introducing it into conversation.
It’s fair to say that the reaction to the Bill has been mixed, with some considering it to be the panacea to all ills, while others are sceptical that it will represent anything in practice other than Ward-of-Court-lite, and some think that the legislation is not radical enough.
More often though, I have been met with confusion, anger or a complete lack of knowledge about the Bill and what it contains. On one memorable occasion I was branded a ‘lunatic’ for suggesting these changes were imminent. The irony of receiving this moniker when speaking about repealing the ‘Lunacy Act’ was not lost on me.
While it is clear that confusion remains and that the information is not necessarily ‘out-there’, it is simply not true to say that there has not been publicity and consultation on the legislation.
Extensive consultation has happened, individuals and organisations were invited to make written and oral submissions, and there was a public consultation in Dublin Castle in 2013 when the Bill was first launched by the then Minister Alan Shatter. Between the recent third and fourth stages of the Bill there were close to 300 amendments leading to significant changes to the legislation.
But the fact remains that in the ‘real-world’, there remains a confusion about why this law will matter and how it will affect people’s lives. The law is complex in parts, and often the debate around it is technical or framed in legalese. Although the Bill itself does not necessarily strike new ground on an international scale, it does represent a seismic shift in the area of capacity and decision-making. This law matters and it matters a lot.
And it doesn’t just matter for people with disabilities; the word ‘disability’ does not appear in the Bill when referring to capacity. The Bill is for everyone, applies to everyone and even if it doesn’t affect our lives today or the life of a person in our family, it will at some point.
For most of us, decision-making is something we take for granted until through injury, stroke, mental illness, dementia or Alzheimer’s disease we are suddenly faced with personal, financial or medical difficulties. From our position as apparently competent decision-makers, we are then faced with a very unpalatable set of choices of informal decision-making or Ward of Court.
For all parents, the prospect of their son or daughter becoming an adult and losing parental power is difficult, and for some families of people with intellectual disabilities, their son or daughter becoming an adult is simply too frightening to contemplate.
Many people articulate this fear to me by asking the best way to leave guardianship of their adult son or daughter in their will, and when I inform them that they cannot do this I am met with incredulity, dismay or frustration.
Questions like this are not a reflection of a parental desire to treat their son or daughter as a chattel, but from a fear of a future for which they are no longer around, and a fear of ‘what will happen after I am gone?’.
On the flipside, many self-advocates that I speak with are desperate for this legislation in order to assert their right to make their own decisions. To have their presumption of capacity to make decisions enshrined in law represents an affirmation of their status as adults, as citizens, as equals in law. People speak to me of support, but support on their terms, of their choosing and under their control.
When we consider these two often-competing perspectives, and add in the views of many people who are paid to work with people with disabilities, you see the many angles of approach and the competing perspectives.
The United Nations Convention on the Rights of Persons with Disabilities states that “persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life”. As a bearer of a legal right to make my own decisions, I do not need the State to grant me this right; it is inherent to my personhood. I may need support to articulate my decisions, or to receive the information needed to make my decisions in a way that I can understand, or to have somebody who knows me well enough put forward my will and preferences. The Assisted Decision-Making Bill addresses ‘decision-making’ capacity and this is distinct from legal capacity and is in essence ‘mental capacity’.
The Committee on the Rights of Persons with Disabilities (an independent body that monitors State implementation of the Convention) said in 2014, that “Legal capacity and mental capacity are distinct concepts” and that “mental capacity must not be used as justification for denying legal capacity”.
Clearly the Assisted Decision-Making Bill isn’t consistent with this position, as a person can have their decision-making rights removed by court through a Decision-Making Representation Order, notwithstanding that the representative must act within the ‘will and preference’ of the individual.
Ireland has identified the Assisted Decision-Making Bill as the removal of a barrier to ratification of the Convention, not regarding this apparent conflict.
In a future reality where my capacity is in doubt because of a change in my mental functioning, I will need the Assisted Decision-Making legislation. People who know my ‘will and preferences’ will become crucial support mechanisms. These are not necessarily paid people with a checklist or flowchart on ‘functional capacity’ – nor are they medical professionals with a ‘mental age of…’ barometer.
They are not people who will decide what is good for me or in my ‘best interests’. My will is mine, it is personal to me, and my preferences flow from my will. The best people to evidence this are those who know me and my narrative, and that is personal to me.
The Bill went to Seanad stage on November 10th 2015, and barring any last minute amendments or difficulties should be law before Christmas. Although this will be a momentous day and it is true that I for one will certainly toast good riddance to the Lunacy Regulation Act 1871, it does not represent the end of the journey.
When the legislation is reviewed in 5 years, as is set out in law, it will hopefully be in an Ireland that has ratified the UN Convention, and discussion and debate around whether this law satisfies our obligations under the convention (or not!). I would hope that by then a significant body of individuals would have used the supports under the legislation, and in particular the less interventionist mechanisms contained in it.
An analysis of how the legislation is affecting the real lives of people will be crucial to deciding whether the legislation is successful or not.
There is significant work to be done to promote this legislation, and promote confidence in people using the legislation. We need to equip individuals to actually utilise and avail of it, to ensure that people offering services (all services, not just care services) understand their role, and to encourage family members to understand their role too.
There is work to be done to promote self-confidence among people with disabilities that they have a right to make decisions with support and not have that right wrested from them.