Using easy read information about mental health for people with intellectual disability

Abstract

Background: Access to information is a right articulated in the United Nations Convention on the Rights of Persons with Disability that remains unrealised for many people with intellectual disability. Information access, including the provision of easy read documents, is one strategy recommended to address the widely recognised inequality in mental health outcomes and service access for people with intellectual disability. This research explores how easy read information about mental health is used to make mental health information more accessible for people with intellectual disability.

Method: A mixed methods study was undertaken which included policy analysis, resource mapping and semi-structured interviews. Australian and New South Wales (NSW) State and Local Health District mental health policy documents were reviewed (n=66). Semi-structured interviews were conducted across four sites in Sydney NSW to explore how easy read was used. Participants (n=49) included people with intellectual disability, their carers or families, advocates and mental health staff. The activities of accessing, understanding, appraising and applying information as defined in Sørensen et al.’s integrated health literacy framework were used to analyse the data.

Findings: Mental health policy rarely incorporated communication strategies for staff to use when working with people with intellectual disability, despite agency commitment to the principle of accessible information. Easy read was one of several strategies people used to make information easier to understand and assist people with intellectual disability to appraise and apply information. Relationships between people with intellectual disability, family or carer and service providers affected information access for people with intellectual disability. Most mental health staff did not use accessible information and did not consistently offer people with intellectual disability opportunities to understand, appraise and apply mental health information.

Implications/Significance: People with intellectual disability did not routinely have access to mental health information, confirming that agencies are not meeting their obligations to provide accessible information. Enabling information access requires urgent systemic change, so that staff attitudes, service agency policy and structures uphold the right to information. Inclusive practices, that incorporate using easy read in health contexts, including mental health, are needed to facilitate change.