The Theory, Practice and Politics of Supported Decision-Making:
International and Cross-Cultural Perspectives
The 2023 Autonomy Summer School took place on 9th, 10th and 11th August at
Wivenhoe House Hotel, University of Essex, Colchester Campus. See below for programme and details.
About the Summer School
This year’s Summer School presented an opportunity to pause and take stock of recent progress (and continuing obstacles!) in the long struggle for legal recognition and human rights for persons living with disabilities.
It was not long ago that the concepts of “supported decision-making” and “inclusive legal capacity” were known mainly as radical ideas in the discourse of a few activists and academics. There followed a period of innovative research and pilot programmes around the world, setting out to demonstrate and validate a real and viable alternative to the traditional approaches of guardianship and best-interests decision-making. We are now living through an exciting new period in which these concepts are taking their place in statutes and civil codes around the world.
The 2023 Autonomy Project Summer School brings together leading activists who have helped to achieve this remarkable result. They will be joined by an international group of students, researchers, policy makers, and frontline professionals in medicine, law, and social work, along with service users, civil servants and government officials. We will review recent progress and setbacks, reflect on lessons learned, review the most recent research, and work together to plot the way forward.
Some specific questions:
- How are laws here in the UK and around the world being reformed to achieve greater inclusion for persons living with disabilities?
- How can concrete practices of care be modified to ensure respect for the human rights of care recipients?
- What does it mean to respect for the rights, will and preferences of persons in care settings?
- How should practices of supported decision-making and advance choices be regulated?
- What is the state-of-the-art in research on interpretative support for the exercise of legal capacity?
For this 13th incarnation of the Summer School, we adopted a cross-cultural approach to the challenges, with particular attention to recent developments in Scotland (which has recently completed an intensive review of mental health and mental capacity legislation), Japan (which was recently reviewed by the UN Committee on the Rights of Persons with Disabilities, and where new pilot programs are underway), Australia and Canada (which have long been global leaders in developing new forms of recognition for decision-making support).
This year’s summer school was be conducted in English and Japanese; translation services provided.
The 2023 Summer School was co-sponsored by the Essex Autonomy Project, the Canadian Institute for Research and Development on Inclusion and Society, and Supported Decision-Making Japan.
The Summer School took place at the four-star Wivenhoe House Hotel & Conference Centre on the Colchester Campus of the University of Essex. The venue provides an ideal environment for a small-scale meeting with ample time for reflection, discussion, and debate.
About the Autonomy Project
The Essex Autonomy Project is a research and public policy initiative, based at the University of Essex, and investigating the ideal of self-determination (autonomy) in the context of care (health care, social care, eldercare, psychiatric care, etc.). Led by Professor of Philosophy, Wayne Martin, it involves extensive intramural and extramural collaboration with jurists, clinicians, service users, activists, civil servants, and policy makers. It is affiliated with the award-winning Essex Human Rights Centre.
(University of Bristol)
Lucy Series is a socio-legal researcher with an interest in how law constructs and shapes power relations in caregiving relationships. Lucy is an academic nomad. She studied Psychology with Philosophy (MA, Oxford University; MSc, University of Bristol) and held a variety of roles working with people with long-term cognitive impairments (e.g. learning disabilities, autism, dementia) in the health and social care sectors. These experiences led to her ‘turning to law’ to see if mental capacity and human rights legislation truly could ‘empower’ people who draw on care and support (PhD in law, Exeter University). She has held research and academic positions at the Centre for Disability Law and Policy, NUI Galway, and the Centre for Health and Social Care Law, Cardiff University, including a Wellcome Society and Ethics Research Fellowship (2013-2022)
(Japan Legal Support Centre)
Toshi has devoted a significant portion of his career to civil law with a specific research interest in the Adult Guardians Law. His legal social work activities as a staff attorney at Japan Legal Support Center (JLSC), such as establishing an advocacy center in conjunction with relevant organizations in such field, have had a great impact on local authorities, welfare agencies and lawyers in Japan. Toshi is a research fellow at the University of Essex in the field of “Mental Capacity Act 2005,” including the issue of supported decision-making for persons with disabilities. He established the Japan Network of Supported Decision-Making (“SDM-Japan”) supported by University of Tsukuba and the Nippon Foundation. Since 2018, he has been engaging to make the SDM guidelines released by the Ministry of Health, Labour and Welfare and its training programmes, as a team leader of the section of supported decision-making and adult guardianship in Japanese Law Society (JFBA) and a member of the state-sponsored expert committee covering issues of adult guardianship in Japan. In September 2022, the CRPD Committee published concluding observation for Japan. Based on the recommendations, he is working with the local government, the Nippon Foundation and SDM-Japan to launch the Supported Decision-Making Project in Toyota City with the aim of establishing a sustainable SDM system that could replace the adult guardianship system.
(Edinburgh Napier University)
Michael Bach (Institute for Research and Development on Inclusion and Society)
For over 25 years, Michael Bach has undertaken research and development in Canada and internationally on ways to advance the full inclusion and human rights of persons with disabilities. His research and publications cover disability theory, policy and practice in a range of areas including education, employment, and funding and delivery of community-based services. Michael’s particular area of expertise is in legal capacity of people with intellectual disabilities. Michael holds a Ph. D. in Sociology and Equity Studies from the University of Toronto’s Ontario Institute for Studies in Education, where his dissertation focused on developing a more inclusive theory of personhood on which to challenge the usual equation between intellectual disability and legal incapacity. He is co-editor with Nicolás Espejo Yaksic of Legal Capacity, Disability, and Human Rights, with contributed chapters from an international group of authors, forthcoming this September from Intersentia Press.
Alex Ruck Keene
(39 Essex Chambers and Kings College London)
Alex is an experienced barrister, writer and educator. His practice is focused on mental capacity law (broadly defined) in which he is able to provide specialist advice and representation. He also writes extensively in the field, editing and contributing to leading textbooks and (amongst many other publications) the 39 Essex Chambers Mental Capacity Law Newsletter, the ‘bible’ for solicitors (and others) working in the area. Alex is a Wellcome Trust Research Fellow and a Visiting Professor at the Dickson Poon School of Law at King’s College London. He served as consultant to the Law Commission in their review of the deprivation of liberty safeguards and as legal counsel to the Wessely Review of the Mental Health Act.
(Kings College London)
Jillian is a Senior Lecturer and Deputy Director in the Centre of Medical Law and Ethics, King’s College London. Her research examines questions at the intersection of moral psychology, human decision-making and personal rights and responsibilities. The themes include the relevance of mental capacities for recognition as a legal agent in civil and criminal contexts, and how to understand undue influence in supported decision-making. These interests evolved from training in neuroscience (BSc Hons, Australian National University and University of Melbourne) and philosophy (PhD, Monash University). Jillian has supervised doctoral students investigating disability rights theory, and the practice of support in decisions about contraception by people with intellectual disabilities. She is currently a member of the National ACT Complex Case Discussion group and the South East London Mental Health and Community Ethics Forum.
(Essex Autonomy Project)
Adrian D Ward has a long international record as expert and campaigner in law, rights, policy and practice relating to people with psycho-social, intellectual and cognitive disabilities, and in creating service delivery projects for them. He has been published in many countries and many languages for almost four decades. His many books include the standard texts on Scots adult incapacity law. He is in frequent demand, nationally and worldwide, as lecturer and adviser. He has advised governments and international organisations. As consultant to Council of Europe he completed and published in 2018 a review of implementation of the Council’s Recommendation on principles concerning continuing powers of attorney and advance directives for incapacity. He was president of the organising committee of the World Congress on Adult Capacity in Edinburgh in June 2022. He is a member of the steering group of the International Advisory Board for those World Congresses; expert adviser to the Centre for Mental Health and Capacity Law, Edinburgh Napier University; and a research affiliate to Essex Autonomy Project, University of Essex, where he was one of the proposers of, and a participant in, the Three Jurisdictions Project. He has been convener of the Law Society of Scotland’s Mental Health and Disability Sub-Committee from 1989, a post he will relinquish at the end of 2023. His many awards include an MBE for services to people with learning disabilities, for charitable work and journalism, lifetime achievement, and honorary membership of the Law Society of Scotland. As a Fellow of European Law Institute, he proposed, and co-leads, the Institute’s project to draft model laws and supporting materials for advance choices for future disablement.
(Essex Autonomy Project)
Wayne is Professor of Philosophy at the University of Essex, where he is a member of the Essex Human Rights Centre and Director of the Essex Autonomy Project, a research and public policy initiative focusing on the ideal of self-determination (autonomy) in the context of care (health care, social care, eldercare, psychiatric care, etc.). He also holds an honorary research position with the South London and Maudsley NHS Foundation Trust. He is the author of numerous research articles and reports focusing on issues concerning decision-making and mental capacity in the context of mental health care, and has been involved in policy formation both in the UK and abroad. From 2014-16 he led a team that supported the UK Ministry of Justice in preparation for the review by the United Nations of UK compliance with the United Nations Convention on the Rights of Persons with Disabilities. In 2018 he served on the Equality and Human Rights topic group for the Wessely Review of the Mental Health Act.