Restriction lift date: 2029-09-30
The law and practice of healthcare decision-making for adults with severe to profound intellectual disabilities
Loading...
Files
Date
2025-11-23
Authors
Lynch, Ann
Journal Title
Journal ISSN
Volume Title
Publisher
University College Cork
Published Version
Abstract
This thesis uses socio-legal and doctrinal methodology to investigate how healthcare decision-making operates in the lives of adults with severe to profound intellectual disabilities (ID), prior to the full commencement of the Assisted Decision-Making (Capacity) Act 2015 (“the ADMA”). It addresses three related research questions. The first research question interrogates the legal and international human rights background that affects healthcare decision-making by and for adults with severe to profound ID. The second research question investigates how healthcare decision-making operates for adults with severe to profound ID, using empirical research with healthcare providers and family members. The third research question examines the lessons that can be learned from the empirical research for the implementation of the legal framework under the ADMA for adults with severe to profound ID in the context of healthcare decision-making.
The findings of this thesis demonstrate a shift towards a more human rights-based approach to capacity and support under the ADMA. The principles and mechanisms under the ADMA offer the potential for improved healthcare decision-making for adults with severe to profound ID, and, on a practical level, the empirical research demonstrates efforts in providing support and building capacity. These efforts take time and resources and usually involve a culture of support. However, the thesis identifies potential hurdles and challenges for the ongoing practical implementation of the ADMA for adults with severe to profound ID, such as the availability of supporters, choosing and appointing a supporter, the concerns of formalisation for existing informal support relationships, increased financial costs, and dealing with conflict.
The start of the transition to the support-based framework under the ADMA is underway. This research outlines some lessons that can be learned from undertaking empirical research at this pivotal time for capacity legislation in this jurisdiction and acts as a baseline to assess effective implementation of the ADMA for adults with severe to profound ID.
Description
Keywords
Assisted Decision Making , Intellectual disability , Decision making capacity , Care , Consent
Citation
Lynch, A. 2025. The law and practice of healthcare decision-making for adults with severe to profound intellectual disabilities. PhD Thesis, University College Cork.