Author: Dr Hannah Casey, Postdoctoral Fellow, iDecIDe, Dept of Psychology & ALL Institute
The topic of public health is one that emerges frequently in the context of people within intellectual disabilities. Despite its purpose being to improve health outcomes for all communities, people with intellectual disabilities are frequently left out of the conversation. It has been noted many times that health research often fails to include them as meaningful participants, often claiming they are a confounding variable within the data. This is despite known evidence that certain health conditions, such as Alzheimer’s disease, have been found to disproportionately affect people with intellectual disabilities compared with the general population. Furthermore, despite great strides in recent years in the fields of Public Patient Involvement (PPI) and self-advocacy, many people still believe that people with intellectual disabilities do not have the ability to speak on behalf of themselves or their community as a whole, or to influence policy and practice in a meaningful way for their benefit. This is often the case in many areas of life for people with intellectual disabilities, both in large complex topics like public health, but also in more personal ways, such as having limited access to their own finances. All of this begs the question- how can we strive to ensure that people with intellectual disabilities are afforded the freedom and support to address their own needs, both personally and politically?
One such method is that of Supported Decision Making (SDM). SDM fundamentally rests upon the premise that people with intellectual disabilities have the right to make their own decisions with as much support as they desire, from a group of supporters they have chosen themselves. However, in the Irish context, the adoption of this type of support has been somewhat hampered by confusion and uncertainty surrounding how to apply it effectively in context. This uncertainty became more apparent after the signing and eventual commencement of the Assisted Decision Making (Capacity) Act 2015, which abolished direct guardianship in Ireland, and instead set up the Decision Support Service (DSS), a government body whose purpose is to oversee and advise people who wish to avail of this new form of support. However, the new system has left many people with intellectual disabilities, their families, and their professional carers, with new questions regarding how this new system will change their current support methods, and what they need to do to implement it in their daily lives.
I have attempted to address this confusion through my own PhD, in which I spoke to people with intellectual disabilities, their family carers, and professional carers about what worked best for them in decisional support, and what they would like to see next on a national scale to help them become more comfortable with these newer methods. Their opinion was clear- they wanted resources designed to demystify, and educate the public, on SDM as a process, and to ensure every member of the support circle knew what to do and how to work together. Crucially, they wanted to be the ones to drive this change. This perspective resulted in my current Postdoctoral Fellowship, the iDecIDe project, which I am carrying out in Maynooth’s Department of Psychology alongside my academic mentor, Dr Laura Coffey. The project is also linked to the ALL Institute, and is fundamentally rooted in the Institute’s mission of enabling all people to achieve well-being and full societal participation.
The iDecIDe project is funded by Research Ireland and aims to develop key resources on how to apply SDM in everyday contexts, including health and wellbeing. These resources will be designed with both a PPI steering group, and a series of co-design workshops. The steering group and workshops will be run with people with intellectual disabilities, their family carers, and professional carers based in KARE, a Kildare-based disability service. Through acting in the role of a community partner. KARE, in their role as co-researchers and co-designers, will ensure that any resources on SDM are developed by and for people with intellectual disabilities. While not directly focused upon the topic of public health, the aim of the project is to facilitate people with intellectual disabilities to design and implement their own resources around SDM, to encourage conversation between them and their family and professional supporters about their life goals and dreams, and to impact wider public knowledge of their right to make their own decisions. Through these conversations, it is hoped that people with intellectual disabilities will have the tools to discuss their views and needs surrounding life decisions, such as their own health and wellbeing, and to impact public understanding as a result.
Public health is a topic that deserves the attention of everyone in the community. It is in the best interest of all to ensure that communities in the local, national, and global context have the ability to advocate for their own needs, wants, and concerns surrounding health and wellbeing. However, to do this in a meaningful way, we need to be given the space and opportunity to share our wants and needs. People with intellectual disabilities are an oft-forgotten group, especially within public health spaces. By working alongside them to develop practical tools for decisional support, the iDecIDe project as well as other research groups can ensure people with intellectual disabilities remain at the centre of their own story, both within public health contexts and beyond.
This funding is a Government of Ireland Postdoctoral Fellowship Programme by Research Ireland
