Abstract
Background: Throughout history, the decision-making capacity of many people with learning disabilities has been supressed under court-appointed, substituted decision-making regimes. Following the inauguration of the 2006 United Nations Convention on the Rights of persons with Disabilities (UNCRpD), the concept of supported decision-making was employed to allow persons with disabilities the right to make their own decisions based on their will and preference, supported alongside trusted individuals when necessary. Countries such as Canada and Sweden have in place legal formalities endorsing supported decision-making, however, it is yet to be legally recognised in other signatory UNCRpD countries including New Zealand.
Objective: The objective of this literature review is to identify the perspectives and experiences of supported decision-making by adults with a learning disability and/or that of their supporters to assist New Zealand in introducing law reforms that promote supported decision-making and in turn, a person's legal capacity.
Method: An integrative review was conducted utilising Whittemore and Knafl's (2005) framework to identify and analyse current literature that described the perspectives and experiences of those using supported decision-making. Fifteen qualitative articles were identified following a comprehensive database search and quality appraisal. The process of data analysis resulted in the development of two themes and seven subthemes.
Findings: The findings of this integrative review established several aspects that influenced how a decision-maker could assert their will and preference, and how a supporter interpreted one's will and preference. These included past experiences and communication styles, the value of education and influence exercised by supporters. Several factors inhibiting the implementation of supported decision-making were also identified. Time pressures, insufficient support from disability service providers, an ingrained culture of assumed incapacity and managing decisions that encompassed elements of associated risk were all recognised in the findings as challenges requiring acknowledgment going forward.
Conclusion: The findings and recommendations of this review demonstrate the timely need to replace and reform the legal underpinnings in New Zealand that supress a person's legal capacity and their inherent right to make their own decisions. Introducing supported decision-making into the legal framework is necessary and has been shown to increase confidence and independence. Successful implementation of supported decision making will be required to acknowledge and act on the challenges that inhibit effective execution. Alongside legislative change, offering access to sufficient supports, ongoing education and the opportunity to provide input into decisions governing their own lives will create better opportunities for people with learning disabilities in exercising their own rights, will and preferences.