Living with Disability Research Centre Online Seminar

Supporting rights of people with cognitive disabilities to self-determination: exploring strategies used by NSW Public Guardians and NDIS support workers

Our October seminar will feature two presentations from empirical studies undertaken by two of the Living with Disability Research Centre’s outstanding PhD students.

Jenna McNab reports on her findings from an investigation into the way NSW Public Guardians have made decisions with people with disabilities for whom they had legal decision-making powers.

Charity Sims- Jenkins reports her findings from her project about support worker perspectives and strategies for supporting self-determination of people with intellectual disabilities.

Crossing the Great Divide: How NSW public guardians make decisions within competing domestic and international frameworks

Jenna McNab, PhD Candidate, Living with Disabilty Research Centre

Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) mandates equality of legal capacity for people with cognitive disability. It seeks to replace substitute decision-making regimes with supported decision-making frameworks wholesale, rather than asking whether the former might already contain some elements that comply. Justifications are based on theoretical understandings of substitute decision-making legislation, and not on actual implementation.

This presentation looks beyond ‘law on the books’ to provide insight into the on-the-ground decision-making process and practice of NSW public guardians under the Guardianship Act 1987 (NSW). It describes a Guardians’ Human Rights Substitute Decision-Making Outcome Typology — a grounded theory that explains how guardians instinctively use ‘Both/And’ thinking to effect human rights substitute decision-making within polarised domestic and international authorising environments.

The presentation briefly outlines the Typology's four distinct Decision-Making Outcome Types and shows how each aligns with Article 12 in various ways, to the greatest extent possible within the current NSW framework. This demonstrates that substitute decision-making in NSW is better aligned with international human rights obligations than the legislation suggests.

Direct support staff perspectives on supporting self-determination for adults with intellectual disabilities

Charity Sims-Jenkins, PhD candidate, Living with Disability Research Centre

Background: Self-determination is acting from intrinsic motivations (e.g., values, inspiration) more than extrinsic motivations (e.g., external rewards, punishments, what other people say). This is important for psychological wellbeing. Adults with intellectual disabilities often require support to act with self-determination, yet this may inhibit it instead of supporting it. This PhD study aimed to explore the perspectives of disability direct support staff about how to support adults with intellectual disabilities with self-determination, and how these perspectives changed in response to a workshop.  

Method: 22 disability direct support staff (including students of disability support related courses) were interviewed before and after attending a workshop. The workshop presented the perspectives of adults with intellectual disabilities about not feeling supported to act with self-determination. A combination of deductive and grounded theory methods were used to analyse the data.  

Findings: Support staff were already motivated to support adults with intellectual disabilities to achieve their own chosen goals. Their practices for this divided into two orientations of support: ‘goal directed’ and ‘person directed’. Goal directed support was more common; it involved aiming to get the person to their chosen goal by solving problems on the way to it. Person directed support involved checking with the person how they wanted to reach their goal, such as at what pace and knowing who does what.

In the goal directed orientation, staff chose support practices based upon the goal and whether it seemed possible to achieve. In the person directed orientation, staff chose support practices based on checking how the person wanted to receive support. The messages staff observed during the workshop included that people may not receive support in the way it was intended by staff, and that supporters should check in with the people they support about how they want to be supported.  

Conclusions: These findings suggest that it matters how staff interpret their role in supporting an adult with intellectual disability with self-determination. When staff focus on the person’s goal to determine their support practices, they may miss cues from the person about how they want to reach their goal or if that is still a priority. Although shifts in orientation were not measured, the results workshop suggest some possibilities for encouraging person directed support practices more aligned with the concept of self-determination.