Social Structures
Author: Hannah Casey, ALL Blog Editor and PhD Candidate at the Department of Psychology, Maynooth University
At long last, the highly anticipated Assisted Decision-Making (Capacity) Act 2015 has been fully commenced in Irish law today, April 26th. This Act, which replaces the outdated Lunacy Act of 1871, aims to align with Article 12 of the United Nations Convention for the Rights of Persons with Disabilities (UNCRPD) by enshrining in statute the right for people with disabilities to make their own decisions, and removing formal guardianship arrangements. As part of this new structure, the Decision Support Service (DSS) will finally be able to open its doors and provide much needed services, supports, and resources to people who need it. This service will allow people with disabilities to access necessary supports to make their own decisions, with as much help as they themselves deem necessary. Such decision-making is referred to as supported or assisted decision-making– a formal method of support that has fast been gaining traction across the world.
During the course of my research, which focuses on how people with intellectual disabilities and their professional and family supporters prefer to make decisions, I noticed that many of my participants were confused by the concept of assisted decision-making. Many had not heard of this support method, and those who had were not sure what it meant. There also seemed to be a startling lack of information or resources available to them on the subject. With this in mind, along with my supervisors Dr Laura Coffey and Professor Deirdre Desmond, I decided to embark on an investigation to determine what exactly could be found by the average Irish person seeking information on assisted decision-making on Google. We refer to this as an environmental scan. This involved constructing a search string which was then input into Google, with the first 10 pages of results then saved to Evernote a chrome extension which allows you to clip, screenshot, and save internet results into a cloud folder for future examination. We then examined these results much like you would a systematic review, with a carefully chosen set of inclusion and exclusion criteria, and a discussion of any differences of opinion.
Initial examination focused on identifying the material type, the target group, level of accessibility to that group, and relevance to a search on assisted decision-making. Out of 100 results, this initial screening left us with 34 results specifically aimed at providing information on assisted decision-making in some capacity to professional carers, family carers, or people with intellectual disabilities themselves. We then developed a more in-depth guide to determine the extent to which the resources offered across these 34 results were useful, accessible, and generalisable, excluding any that proved to be too jargon-heavy, did not offer any practical real-world advice, had no original resources, or were behind a paywall. We also took note of who the results were aimed at out of the three target groups in an attempt to determine which would be most successful at finding information suited to their needs. This second screening left us with 14 results. Of these 14, the majority were for professional carers, with a handful aimed at family members, and just three results offering accessible material for people with intellectual disabilities themselves. We further quality screened the 14 final results using an adapted version of the Patient Education Materials Assessment Tool (PEMAT), a checklist designed to assess the accessibility of patient materials aimed at explaining medical information. Most material scored highly, but many websites did not provide basic accessibility features such as read aloud options, or larger font.
The DSS website, though it existed at the time, did not contain many resources when this scan was being conducted. It contained links to the Capacity Act legislation, and to other websites such as the HSE, but did not offer original resource documents. The service itself has spoken at length about how they were unable to develop or kickstart the service until the Act was officially commenced, which impacted on and delayed the provision of appropriate resources. There were many reasons for this delay, including hesitation on the part of the government, and a subsequent 2022 Amendment to the 2015 Act to account for legislative changes since its initial conception seven years prior. Now that they can officially open their doors, I am confident that they will have the opportunity to educate the Irish public on Assisted Decision-Making. This will undoubtedly mean that much more than 14 viable web results will be discoverable online.
The lack of material for people with intellectual disabilities was troubling. Inclusion Ireland and St Michael’s House were the primary providers of materials that contained large font, illustrative pictures to aid understanding, and explanation of technical terms in clear, simple language. This is not to say that the other resources were impenetrable, but they were designed for people without an intellectual disability. This is worth noting, as it indicates that thus far, few resources are being provided by public bodies or government organisations. However, now that the DSS opening its doors, I expect this will change in the coming months. They have provided important information in the lead up to the commencement over the past while with their Get Ready series, which highlights key factors the public will need to know about the new system. It is vital that we keep people with disabilities at the centre of this conversation and ensure that all published materials going forward are designed with that in mind. Nothing about us without us remains a central point of disability concerns, and this must be reflected in all published information on or off the web. I look forward to the development of further resources for service users on this vital topic.