Ethics of time: Ensuring effective relational communication with NDIS participants who have intellectual disabilities

Abstract

Aim: The National Disability Insurance Scheme (NDIS) has been criticised as being insufficiently tuned into the needs of people with intellectual disabilities (ID). Our research project aimed to get an improved understanding of how people with ID experience their disability services now; and what they anticipate they might need or want in the future, following the introduction of the NDIS. Method: A systematic randomised sampling strategy was used to recruit Endeavour Foundation research participants residing in the southern district of Brisbane, Logan, Ipswich and Gold Coast. 70 people and their families were interviewed using a mixed methods survey, gathering both quantitative data and qualitative information (personal narratives). Results: The interviews were time‐intensive, averaging 80 minutes. The interviewers had substantial difficulty communicating with most interviewees. Difficulties included participants’ speech impairments; and the interviewers’ and interviewees’ lack of familiarity with (and/or inability to use) communication aids. Conclusions: Effective relational communication methods to engage people with ID and who are non‐verbal, in discussions about their future support have yet to be established. This has significant ethical implications for the NDIS's processes.