ABSTRACT
Purpose: Individuals with autism spectrum disorders (ASD) and Complex Communication Needs (CCN) require additional support from communication partners in order to communicate effectively. This study aimed to address a current gap in the literature by exploring communication partners' perspectives of their role. Method: A qualitative multiple case study design was used. The sample consisted of four participants who represented a diverse range of relationships with adults with ASD and CCN. Individual, in-depth, semi-structured interviews were conducted. Interview transcripts were analysed using the Framework Method of thematic analysis. Result: Four key themes were identified: (1) respecting the individual (2) flexibility (3) reaching beyond the dyad and (4) underlying beliefs. Due to the diverse range of relationships represented in this study, each case provided a unique perspective and therefore the results of each individual case were contrasted within each theme. Conclusion: The findings of this study highlight the crucial role that communication partners play in enabling interactions with adults who have ASD and CCN. Additionally, these findings provide preliminary evidence to support an expansion of the existing framework of communicative competence for individuals with CCN. Future research should aim to expand on these findings in order to investigate their generalisability.
Subject(s)
Autism Spectrum Disorder , Humans , Qualitative Research , Research Design , CommunicationABSTRACT
PURPOSE: Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) emphasises full and equal legal capacity of all citizens to participate in decisions. This paper examines whether the principles of Article 12, also reflected in other reform documents, were evident within 12 guardianship hearings conducted in Victoria, Australia from 2001 to 2016 involving adults with cognitive disability. The issues this study raises resonate loudly across the globe as multiple signatory nations to the CRPD grapple with the complexities of implementing Article 12. METHODS: Reports of VCAT decisions with written reasons of Guardianship List hearings from 2001 to 2016 were selected from the Australasian Legal Information Institute site and analysed thematically. RESULTS: Thematic analysis of proceedings revealed three consistent trends. Firstly, a presumption of incapacity based on disability excluded Proposed Represented Persons (PRP) from involvement in decision-making. Secondly, external perceptions of PRPs best interest were dominated by safeguarding concerns and conflict between supporters. Finally, in multiple cases, although a PRP's preference had been established, it was considered immaterial to the final decision. CONCLUSIONS: The paper concludes with a promising discussion of the new Guardianship and Administration Act 2019 (Vic), which came into force on 1 March 2020, and recommendations for guardianship practice both locally and internationally.IMPLICATIONS FOR REHABILITATIONLegal capacity should be recognised as inherent in all people, and therefore decision making incapacity should not be assumed based on a person's cognitive and/or communication disability;The supported decision making mechanisms, born from Article 12 of the CRPD, that facilitate acknowledgment, interpretation and acting upon a person's expression of will and preference need to be recognised and promoted within the context of Guardianship proceedings and by health professionals when assessing decision making capacity of people with cognitive disability;Significant knowledge and attitudinal changes are required within the Tribunal and incorporated into the practice of health professionals informing the Tribunal, in order to counter many conceptual underpinnings embedded within current guardianship legislation across the globe;Ascertaining the will and preference of the proposed represented person should be prioritised by Guardianship tribunal members' rather than the management of conflict between interested parties.
