Building a bridge between empowerment and protection: An ethnographic study on supported decision-making within private acquired brain injury

Case Managers (CMs) co-ordinate specialist support for clients following an acquired brain injury (ABI) and assist ongoing rehabilitation (Clark & Wilson et al, 2016). This research will focus on CMs appointed as part of litigated personal injury claims and funded by the compensation settlement. CM's are obliged to follow the second principle of the Mental Capacity Act 2005 (MCA) which mandates that all practicable steps must be taken to support a person to make their own decisions (DCA, 2007).

Further to this, Article 12 of the Convention on the Rights of Persons with Disabilities (RPD) endorses that persons with disabilities are provided access to the support necessary to enable them to make decisions that have legal effect, and the Committee on the RPD strongly calls for a move towards supported decision-making, where the outcome is dictated by the will and preferences of the individual (Committee RPD, 2014).

Research Questions

1. Where there is a reasonable belief or determination that the person lacks specific decision-making capacity, how do CMs: Support the client in making the decision? , Balance the wishes and preferences of their client against identified risks? , Decide what is in the client's best interests?

2. How are the legal frameworks of the MCA and CRPD incorporated into organisational policies and practice standards, and how does this shape supported decision-making (SDM) practice in private case management?

3. How does SDM practice within private case management affect the experience of clients with ABI, in terms of agency and control over their lives? Literature Review

Studies undertaken with CMs and affiliated neuro specialists, have highlighted issues with the application of the MCA in the context of ABI (Norman et al, 2018; ABI & MCA Interest Group, 2019; Norman et al, 2020); concerns were raised around the lack of understanding in social care, relating to the 'invisible disability' associated with ABI. Executive dysfunction causes difficulties in planning and carrying out intended actions, it is often coupled by the 'frontal lobe paradox' (George & Gilbert, 2018).

ABI can also reduce a person's online awareness of their behaviour and impulse control (Owen et al, 2018; Whiting, 2020).

Holloway & Norman (2022) found that social care professionals were overlooking these hidden deficits when concluding that individuals had capacity to refuse support, which resulted in significant harm. Furthermore, a conflict was observed between social care and specialist rehabilitation approaches, related to balancing autonomy and risks (Norman et al, 2018; ABI & MCA Interest Group, 2019; Cameron et al, 2022).

Holloway & Fyson (2015) highlighted problems when reconciling the needs of people with ABI, with the orthodox concept of autonomy. Linden et al (2023) made recommendations around disseminating expertise from rehabilitation specialists. But empirical data which specifically focuses on how people are supported to make decisions in ABI rehabilitation is limited.

More research is needed, along with an exploration of the challenges when operationalising the ideals in the CRPD.

The research will be framed by critical disability perspectives, which draw attention to how binary concepts, such as capacity/ incapacity, serve to reinforce disablist power structures (Clough, 2022) and where the liberal legal subject is presented as able, rational, and autonomous (Hunter, 2013). I will interrogate themes using the lens of relationality which recognises how the interwoven dynamics of personal relationships, social structures, and professional cultures, can shape the person's sense of agency with either constructive or deleterious effects (Harding 2017).

Research Design. Qualitative data will be obtained through a mixed method ethnographic approach; shadowing case managers. I would also conduct semi-structured interviews with case managers and clients/ family members after observations.