Advocacy: time to communicate

Abstract

SummaryThis article offers an introduction to advocacy on behalf of people with mental disorders and/or intellectual disabilities. It concentrates mainly on the issues related to independent specialist advocacy, but refers to other forms also. The term is itself contentious, having different meanings in different contexts. Some of these controversies are outlined here. Inevitably, diverse interpretations imply varying practices, and these too are illustrated briefly. Legislation and concordance of expectations are both contributing to a set of standards to which most advocates in the UK and Ireland will adhere. The requirements that such legislation makes of mental healthcare staff working with independent specialist advocates are outlined, and the ethical dimension of mental health advocacy is noted.

Health advocacy: a vital step in attaining human rights for adults with intellectual disability

“…Advocates can be viewed as ‘pushy and aggressive’ (Fereday et al . ), considered ‘trouble makers’ by some health professionals (Carver & Morrison ) and other service staff who may perceive their views as criticism (Harrison & David ). Such conflict can place support worker advocates in vulnerable positions with their employing organisations (Jorgensen et al .…”

“…). While self‐advocacy may be considered preferable, many people with ID require supportive advocacy to have their voices heard and their health rights met (Llewellyn & Northway ; Harrison & David ). Many factors influence the capacity of people with ID to engage in self‐advocacy, including communication difficulties (Reinders ; Ziviani et al .…”

“…This likely reflects both the support worker role and characteristics of the workforce. Through their employment and associated organisational constraints, support workers may not be able to advocate with a free voice and conflicts of interest may arise (Cocks ; Harrison & David ). The high turnover of support staff (Stancliffe & Keane ; Jorgensen et al .…”

Supporting Primary Healthcare Professionals to Care for People with Intellectual Disability: A Research Agenda

“…). It also educates the person with intellectual disability and their supporter(s), ideally helping them to become stronger advocates for their own health‐related needs through better information and empowerment (Llewellyn & Northway ; Harrison & Davis ; Wullink et al . ).…”

Enhancing Self‐Determination in Health: Results of an RCT of the Ask Project, a School‐Based Intervention for Adolescents with Intellectual Disability

“…Improved health advocacy may be one way to diminish this barrier and ultimately improve the health of people with an intellectual disability. The central tenet of advocacy in health care is that service users should be enabled to speak up on their own behalf and empowered to take a lead in the decision‐making process (Harrison & Davis ). However, a review on autonomy in relation to health among people with intellectual disability found, in spite of decades of promoting inclusion, self‐determination and independence, autonomy in relation to health care has rarely been investigated in the literature (Wullink et al .…”