Social Lives
Author: Hannah Casey, Assisting Living & Learning( ALL) Institute Blog editor and PhD Candidate, Decision Support Service
Supported Decision Making is a method that may be employed by persons who require help to make decisions in their day-to-day lives. These decisions may range from, where to go on holiday, to, how to manage financial concerns. Supported Decision Making is gaining traction and importance across the globe, and particularly in an Irish context in anticipation of the Assisted Decision Making (Capacity) Act 2015, set to be commenced in full by mid-2022. This has the added effect of ensuring Ireland may fully honour Article 12 of the United Nations Convention on the Rights of Persons with Disabilities, which states that persons with disabilities have the right to make their own decisions, and enjoy the same legal capacity that people without disabilities have in their lives. The Decision Support Service (DSS) has been established to support persons to exercise their right to make decisions, with the key understanding that a person’s capacity to make decisions should be assessed by reference to the decision in question.
The Assisted Decision Making (Capacity) Act 2015 provides a three-tier system for levels of support, which depend on how much help the person may need. The first tier utilises a Decision-Making Assistant (DMA), who gathers the information for the person and explains it, but ultimately the decision rests with the Relevant Person (RP). The second tier involves a Co Decision-Maker (CDM), who makes decisions together with the RP. The third tier involves a Decision-Making Representative (DMR), who will represent the decisions the RP would wish to make, were they capable of expressing them themselves. The emphasis in this approach is on respect for a person’s will and preferences, not on so-called Best Interest decision-making, or supervision.
At present there is often a misconception that an adult may make decisions on behalf of another adult who lacks capacity to do so, outside of a formal legal arrangement, particularly in medical contexts. This seems to stem from a misunderstanding surrounding the meaning of giving someone the title of Next of Kin in these contexts.
Sage Advocacy conducted a survey in 2018 where people were asked what they thought a person’s Next of Kin was entitled to do for them, and what decisions they were entitled to make. It was found that 32% of respondents thought that in the event they lost their decisional capacity, their Next of Kin would be permitted to access their banking details and handle their finances, and 57% believed their Next of Kin would have the right to authorise medical decisions. However, this is not the case. In truth, unless you have made a formal legal arrangement with the person, they have no formal authority over your decisions, even if you have been deemed to lack decisional capacity in a certain instance. Pending the commencement of the Capacity Act, there are only two arrangements that can be made, namely having them as your Attorney by way of an Enduring Power of Attorney under the Power of Attorney Act 1996, which does not extend to medical decisions, or if the person is in wardship their ’committee’ may be authorised to make such decisions under the supervision of the court.
However, if this is the case, why does this myth of Next of Kin prevail?
The DSS explain this in a recent news post titled “The Myth of Next of Kin”, this can be found on the DSS website. During the COVID-19 pandemic it became evident this myth was prevalent when parents of adult children and adult children caring for their parents, honestly believed they had the right as Next of Kin to refuse or give consent for vaccination. Furthermore, the use of the title of Next of Kin on official healthcare documentation, and the request for signed consent on forms where the person had no legal right as Next of Kin to give it, has also added to the misunderstanding surrounding the term. In truth, a person’s Next of Kin is simply their emergency contact and has no more authority to consent to anything for the person, than anyone else who may be present in a healthcare setting. Naturally, family and loved ones are of course vitally important in context of healthcare emergencies for support, comfort and understanding and may well be best placed to assist healthcare professionals as to the person’s will and preferences. However, this is not the same as them being given the power to make decisions on the person’s behalf.
This issue is being explored by the ALL Institute in several strands of their research. Notably, a PhD project conducted by Hannah Casey focuses on Supported Decision-Making for adults with intellectual disabilities in Ireland and seeks to create guidelines through a collaborative research process. Hannah is engaging in participatory research involving different stakeholder groups: the adults with intellectual disabilities themselves, and family carers as well as professional carers. By providing user-driven guidance and clarity in Supported Decision-Making, Hannah aims to ensure that all involved in the process will be able to more effectively support, and indeed be supported by the Act when commenced next year.
The Assisted Decision-Making (Capacity) Act 2015 seeks to challenge misconceptions by introducing new, clearer options for people who may need assistance in understanding and communicating their choices and decisions. It is important that people are made aware of these options to prevent misconceptions about who does or does not have the power to make decisions for a person, no matter their decisional capacity. Family or loved ones form a vital part of the support network of persons with disabilities, and so must be aware of the Assisted Decision-Making (Capacity) Act 2015 and what it has and has not changed for the person they are supporting. A key outcome of this awareness must be the acknowledgement that Next of Kin does not mean decisional power in the event the person cannot communicate their wishes themselves. People with disabilities have a right to have a voice and control over their personal lives. Indeed, as far as possible, all persons should be supported to engage in autonomous decision making. By having everyone informed, it allows Ireland to move forward as a Nation and ensure that all its citizens may be treated with dignity and respect on all occasions. The commencement of the Assisted Decision-Making (Capacity) Act 2015 and establishment of the DSS are important steps forward in the right direction.