Sarah Lennon is Training & Development Officer with Inclusion Ireland, the national association for people with an intellectual disability and their families.
The Assisted-Decision Making (Capacity) Act was signed into law on December 30th 2015. When this new law commences– expected sometime after the summer – the Lunacy Regulation Act 1871 will be repealed and a new, modern system of supporting people to make decisions will commence.
The new Act will replace the Ward of Court system for adults. Ward of Court most frequently applies when a person with intellectual disability, mental illness, brain injury or dementia comes into money by inheritance or receiving damages, and somebody becomes concerned about that person’s ability or capacity to manage the property. The implications of Ward of Court are significant, with restrictions on finances, travelling, medical decisions, living arrangements, marriage (or divorce) and other contractual restrictions.
Most people with capacity difficulties don’t become a Ward of Court, only those with significant finances. For all other people, there has been no formal system for supporting decision-making. Instead a swathe of ‘informal’ decision-making customs developed such as joint-banking, signing medical consent forms on behalf of a family member, co-signing a lease or contract for care. None of these arrangements were satisfactory from a legal point of view, yet there was no legal middle ground for supporting decision making.
This will change with the new law and while it’s fair to say that the new law has received a mixed reception there is little doubt that people are glad to see the back of the Lunacy Act and Ward of Court. There is an element of unease about the new law. Many families report confusion about how this law will affect them. Put simply, the new law will apply to most of us at some point in our lives either directly or through a family member. The law does not require the presence of a disability or impairment, but rather refers to a person whose decision-making capacity is in doubt. It’s easy to see how; if we live long enough we can all fall under that umbrella.
What is clear however is that this law matters and it matters a lot.
It matters for parents of children with intellectual disability or autism whose son or daughter is turning 18. These parents face the prospect of no longer being the guardian for their adult son or daughter and for some families it is simply too frightening to contemplate. To hear that their decision-making authority is gone leaves people bewildered and scared. The new law puts in place structures to allow for supporting their son or daughter, or in some circumstances substituting in as the decision-maker. The oft-asked question of ‘what will happen after I am gone’ can now at least be answered in part.
It matters for people with intellectual disabilities who report having significant restrictions placed on their freedom to make decisions. Now a right to a presumption of capacity to make decisions will be enshrined in law affirming their status as adults, as citizens, as equals in law. People do want support but support on their terms, of their choosing and under their control.
It matters for the almost 3,000 Wards of Court in Ireland who will have their status reviewed inside a three year period. These individuals and their families experience serious legal restrictions to financial decision making, medical decisions, travelling or decisions about where people live all as a result of the restrictive Ward of Court system.
It may very well matter to any one of us in our lives particularly if our capacity to make decisions is altered by illness, injury or age. Unless we have had the foresight to create a power of attorney (Irish people are notoriously bad at forward planning) then nobody can step in to make decisions on our behalf when they are needed.
This new law will change all of this. While informal support will be fine, in the same way I might ask a friend for advice or support around my money, health or relationships. Informal decision-making will not be allowed. The law is clear; if a person is not making autonomous decisions then there are several support structures available to be used.
Underpinning the new law is the idea of will and preference. This moves the debate away from ‘best interests’ where decisions were made based on what was good for a person towards a self-determined life with the individual making decisions based on what they want, even if that decision isn’t always deemed as ‘wise’.
Another major development in the new law is that formal supports should be from people who know the person and have a relationship of trust with them. Staff or managers of residential homes will not be able to provide formal support. This means that many informal arrangements supporting residents of institutions will need to be unpicked and replaced by formal, family-based supports instead.
The main structures under the new law are Assisted Decision Making, Co-Decision Making and Decision-Making Representation:
Assisted decision-making allows a person to choose someone to assist them to get the information needed, explain the information, get the person’s will and preference and communicate the decision. Co-Decision-Making is when two people make a decision together. The co-decision-maker should be a relative or friend with a relationship of trust between them. The co-decision-maker will get the information needed, advise on decisions and make decisions together. Finally, as it is a form of substitute decision making, for someone to become a Decision-Making Representative they must apply to court for decision-making powers. A representative will only be appointed if an assistant or co-decision maker is not suitable or available.
The new structures will allow for an individualised approach based on what support the person themselves needs to make decisions. The overarching and archaic Lunacy Act will be gone and decision-making power and control given back to the individual with whatever support he or she needs.
More information and a factsheet on the Act is available at http://www.inclusionireland.ie/capacity.