Paternalism to empowerment: all in the eye of the beholder?

Abstract

This article reports findings from the first set of qualitative data from a study aimed to further understand practices of decision support for people with cognitive disabilities and assess the impact of training supporters in an evidence-based practice framework. It poses questions about whether, using the Convention on the Rights of Persons with Disabilities (CRPD) as the benchmark, it is possible to identify purchase points for assessing the degree of shift from paternalism towards empowerment of the supported person. The study findings suggest that this is a highly difficult, nuanced and subjective task offering little on which to hang objectivity. Instead, we suggest CRPD realisation of the will, preferences and rights of the person supported may better be realised through training of supporters designed to enable greater participation by persons supported and greater reflection and deliberation on wise and effective ways of providing such support by supporters. Points of interest• The meaning of terms like empowerment, paternalism and capacity building are very difficult to define with any precision • Whether support actually helps someone with a cognitive disability to achieve their will or preferences is hard to assess • There are no easy ways of ensuring that support for decision-making stays on the path set out in the UN Convention on the Rights of Persons with Disabilities • An alternative measure of meaningful participation in decision-making may be a better guide for assessing training of supporters

“I used to call him a non-decision-maker - I never do that anymore”: parental reflections about training to support decision-making of their adult offspring with intellectual disabilities

“…These data reflected the findings from other studies that each instance of support differs, and the practice of a supporter can range from controlling to enabling, depending on the context, decision, values of the supporter and person being supported and their relationship [9,10,12,13]. The findings also illustrate some of the challenges parents face in providing rightsbased decision support, particularly in terms of the continued focus, energy, and patience required, which have been identified in other studies of decision support [11][12][13]26] and are explored in other papers published from the present study [10,21,27,28].…”

“…The aim of this study was to capture the reflections of parents of adults with intellectual disabilities on the value of the training and the application of their learning to support practices. The focus was on changes to practice that reflected the Framework and thus associated with providing more effective support rather than outcomes for the people supported in terms of concepts such as reduced paternalism or increased empowerment which as Carney et al [27] suggest are elusive-concepts to measure. The study has demonstrated the efficacy of the Framework, and evidence-based training in building the capacity of parental decision supporters to bring it closer to the type of support envisaged by the rights paradigm and supported decision-making schemes.…”

Parental strategies that support adults with intellectual disabilities to explore decision preferences, constraints and consequences

“…Finding ways of doing this warrants further exploration. Elsewhere we have argued that focussing on the deliberative and reflective nature of practice to judge its quality may be preferable to focussing on outcomes (Carney et al, 2021), and that the Decision Support Questionnaire we have developed shows promise as a reliable tool to measure shifts by supporters towards greater use of rights-based strategies .…”

Moving from Support for Decision-making to Substitute Decision-making: Legal Frameworks and Perspectives of Supporters of Adults with Intellectual Disabilities

“…While debates continue on how to understand and apply the 'best interpretation of the will and preference' standard (see Skowron 2019; Carney et al 2021), many consider this to be a form of supported decision-making rather than substitute decision-making. This can be most relevant in the context of those who support people with severe and profound cognitive disabilities, where those who know those individuals best make decisions for them, but using their knowledge of the individual, rather than a best interests model, to inform their decisions (Mackenzie and Stoljar 2000; Bach 2017; Watson, Wilson, and Hagiliassis 2017).…”

“…A limitation of this work is that data collected from informal supporters of adults with more severe or profound intellectual disability are not included in this subset but are explored elsewhere (Bigby et al 2021). Comparing the sub-sets we note that our findings here are consistent with the reported findings of parents who support adult sons and daughters with more severe intellectual disability.…”