Choice, control and access to information

The National Disability Insurance Scheme (NDIS) is being rolled out in Australia with a view of empowering people with disability and provide them with choice and control. While the scheme is financially designed to ensure control (although not necessarily control by the person with a disability themselves), the concept of choice is underpinned by an assumption that the people engaging with the scheme are informed about what these choices are. The National Disability Insurance Agency (NDIA) is not taking responsibility for informing participants of their choices, and instead relying on other sources of information such as the web (by providing a list of websites of disability services [1]) or of experts (by offering expert consultations). In the past 5 years, we have had opportunities to co- design a number of digital tools with people with intellectual disability and the Endeavour Foundation, a disability service organisation that supports them. We reflected on a web application co-designed to support people in establishing their budget for the NDIS, by assigning services they wish or require to financial categories. The participants were really keen to use a search function to identify the categories of their support need in the application. This provided us a lot of evidence that people express their support requirements (“someone coming with me to the RSL”, “learn how to bake a cake”, “meet friends”) in very different terms than the NDIS categories. This suggests that some high level of semantic computing would be necessary to bridge between the 2 terminologies and allow for a search function to work. Reflecting on a search interface to interactively support people to identify suitable service providers on the web, we collected data from the websites of disability services listed on the NDIS website. Using a baseline search engine, we discovered that the quality of information currently available on these website is not conducive to identifying services online. Simple queries such as “learning to cook”, are difficult to resolve without heavy and specialised semantic processing. Such queries would not only be typical of people with intellectual disability themselves, but also of their families and carers. These examples illustrate that the assumption that the digital era is an enabler of choice and control through enhanced access to information is only true to a limited extent. It is therefore urgent that more attention been paid to designing and developing digital technology that meet the expectations of such assumptions. Disability service organisations also understand their challenge in providing information that is accessible not only as per the web accessibility guidelines, but more importantly linguistically accessible: using language that people with intellectual disability would use. Further to this, digital disruptions outside of the disability sector have demonstrated a potential for providing users a voice and express their view on the quality of various services, which should also be considered from the perspective of choice and control for people with disability