Equal Right to Decide

Abstract

Objectives

People with intellectual disability are not always included in research or able to access academic research articles. This study has been co-conducted with people with intellectual disability about human rights and decision-making in the Australian context. The purpose of the article is to understand the perspectives of people with intellectual disability about decision-making, specifically (1) how people feel about making decisions, (2) what happens when they make decisions, and (3) the right to support for decision-making.

Methods

Participants shared their lived experience of decision-making as a person with intellectual disability. Responses were acquired from participants followed by a recording process, identifying common themes, and organising ideas. A team of authors with and without intellectual disability wrote the article using easy words, short sentences, and pictures to make the information easy to understand. The Easy Read article was tested with other participants with lived experience of intellectual disability to ensure it was accessible.

Results

The research shares (1) what is hard about making decisions and (2) what would make life better for people with intellectual disability. People with intellectual disability talked about the burden of having to prove their disability and not getting information that is easy to understand or support for decision-making.

Conclusions

There is action Australia can take to respect the human rights of people with intellectual disability to be involved in decisions about their own lives, including making a law that says people with disability have the right to support for decision-making.