Ethics and Intellectual Disabilities

Ethics SIRG: Mission Statement

The special interest research group on ethics and intellectual disability aims at an open exchange of views on ethical issues regarding health and social practices in support of persons with IDD and their families. ‘Ethics’ is taken is a broad sense in which it not only addresses moral quandaries as defined in the domain of public policy, but also looks at the cultural and institutional backgrounds that generate them. It stimulates research on ethics within the field of intellectual and developmental disability, and seeks to disseminate its results in the wider circle of the IASSIDD and the research community of which it is part.

In order to fulfill this mission the SIRG will foster communication between SIRG members and the broader IASSIDD community, seek to organize seminars and symposia at regular intervals on topics relevant to their mission. It will develop opportunities for and contributes to discussing ethical issues at IASSIDD world congresses and support the publication and dissemination of relevant material.

Bylaws: as per IASSIDD by-laws

Ethics SIRG on Twitter/X

Come and follow us @IassiddE to get the latest on all things Ethics and Intellectual Disability from around the world!

Contact Social Media Officer Michelle King for enquiries

Past Events

The effects of ongoing marketization in services for people with ID (September 18 2023)

Click here – Empowerment nursing home procurement documents
Click here – Prof. Dr. Sabine Schaper Presentation
Click here – Dr. David Treanor Presentation

Restrictive Practices (May 10 – June 12 2023)

This learning set covered ethical, legal and practical issues concerning restrictive practices. The aim was to learn and collaborate around this topic, discuss gaps in research, policy/legislation and practice knowledge, and prepare a roundtable for the IASSIDD World Congress in Chicago, 2024. 

  • Conceptual clarity towards (least) restrictive practices
  • New legislation for involuntary care
  • Rhetoric and reality – staff training, belief change and restrictive practice
  • Developing and shaping staff practice
  • The Swedish National Association for people with intellectual disabilities
  • SIRG restrictive practices
  • On relationships with restraint and reduction

SIRG Executive

Chair: David Treanor 

David Treanor is a University Associate in the Philosophy & Gender Studies Discipline at the University of Tasmania. His research emanates from his work experiences and studies in social work, ageing, disability, public administration, theology and philosophy. David’s work in these fields drives his passion to develop and implement authentic person-centered models of support that create spaces for persons to live eudamenoic lifestyles. His research addresses connections between disability, philosophy and social reform. He adopts a personalist paradigm to address the nexus between ethics, rhetoric and practice. David has a particular interest in the work of the Scottish Philosopher, John Macmurray.

Secretary/Treasurer: Janet Vogt 

Janet Vogt works as a Senior Research Associate and manager at Surrey Place, an organization in Toronto, Canada, that provides support to people of all ages, including autistic people, and those with developmental and sensory-related concerns. She holds a PhD in nutritional science and a Masters in bioethics. At Surrey Place, she has been a member of the Research Ethics Board, co-chair of the Clinical Ethics Committee, and currently leads the Ethics Education working group. Her day-to-day work involves program evaluation, research, tool design, and ethics support. Janet is co-editor, along with Andria Bianchi, of Intellectual Disabilities and Austin’s: Ethics and Practice.

Members:  

Petra Björne 

I work as a Research and Development Coordinator at the Department for Disability Support in Malmö, Sweden. The department employs about 2500 staff, managers and case officers supporting 2000 service users. People with autism and/or ID are supported through residential services, daily activities, personal assistance, etc. My task is to help staff and managers to develop high quality support within a strong rights-based legal framework. 

My clinical work is mainly on challenging behavior and on implementing evidence based practice. Research in recent years has focused on aging with ID, and to some extent the legal framework in Sweden for intervening in challenging behavior. I don’t work exclusively as a researcher, or as researchers traditionally do. But I do know what it means to change, sometimes challenge, services, and put research results to use by involving those concerned. 

Ruth Northway OBE FRCN PFHEA 

Ruth Northway is Professor of Learning (Intellectual) Disability Nursing at the University of South Wales, UK. She has co-chaired the Ethics SIRG since 2018. Her areas of research interest relate to the health and well being of people with intellectual disabilities and the use of participatory approaches to research. Both areas have important ethical considerations and hence her interest in ethics is very much linked to application in these contexts and to professional practice when working alongside people with intellectual disabilities. Access her work HERE. 

Bill Sullivan    

John Heng     

Andria Bianchi  

Andria Bianchi is a Clinical Ethicist employed by Unity Health Toronto, Canada, where she provides clinical, organizational, and research ethics support to post-acute care organizations. For several years, Andria has served as an ethics consultant for Surrey Place – a developmental sector organization that offers supports and services for people of all ages who are on the autism spectrum and/or have developmental or sensory-related concerns. Before becoming an ethicist, Andria completed her PhD at the University of Waterloo, where her doctoral work focused on the ethics of sexual consent and persons with dementia.

Social Media & Communications:  

Michelle King 

Michelle is a sociologist, lawyer, and consumer advocate. Her research work focuses on decision-making, and how law works in practice for people with disabilities and other impairments to legal capacity. She explores decision-making in practice in a range of areas, including the NDIS, health and aged care, banking and finance, income support, and voting. She is a Research Fellow at the Queensland Aphasia Research Centre (University of Queensland and STARS). 

Michelle has lived experience with complex disability as a parent and supporter of her 25-year-old daughter, Daelle, who has profound intellectual and multiple disabilities. Michelle serves in a range of roles as an advocate and consumer, including as board chair of the national research alliance, Child Unlimited, co-chair of the Consumer Panel and member of the National Guidelines Leadership Group for Australia’s Living Evidence Collaboration, a consumer member of Queensland Health’s QCYCN Adolescent and Young Adult SubNetwork, and a member of Brisbane North PHN’s Consumer Advisory Committee. 

Sabine Schäper 

Sabine Schäper is Professor of Inclusive Education at the Catholic University of Applied Sciences North-Rhine Westphalia, Germany. In her dissertation, she analysed the manifestations and consequences of marketisation in the field of disability services from a theological and social-pedagogical perspective. Her lectures include ethical issues and a human rights based approach to professional practice in disability services. Her research activities focus on ageing and end-of-life care for people with IDD, organizational culture and professional practice around so-called challenging behaviour, and issues around moral distress and prevention of violence in professional practice. 

Contact Us

Scroll to Top