Legal and mental capacity in everyday life

How should the law respect and support the autonomy of persons with intellectual disabilities?

The right to equal recognition of all persons before the law is a long-standing legal principle. Yet people with intellectual disabilities (including people with learning disabilities, acquired brain injuries, and dementia) are often denied their rights to equal treatment before the law, because of the ways that disability is understood in law and society. Professor Rosie Harding’s research, which includes the Everyday Decisions project and the Supported Will-Making follow-up study,  interrogates how socio-legal understandings of ‘legal’ and ‘mental’ capacity interact in the everyday lives of people with intellectual disabilities, and has contributed to emerging reform to the support provided in everyday legally-relevant decision making.

Legally-relevant decisions range from very straightforward choices about daily activities, food and clothing, though decisions about where to live and who to live with, sexual and intimate relationships, education, employment, healthcare, money management and legal choices about things like power of attorney, and end of life planning and the right to vote. Whether or not a person is able to make decision about their own life is regulated by the Mental Capacity Act 2005 in England and Wales. The MCA is founded on 5 principles, including a presumption of capacity, and a right to support with decision-making.

Overview

Professor Rosie Harding’s research exposes the inadequacies of domestic approaches towards safeguarding the rights of intellectually disabled people. Firstly, domestic law has been underpinned by the objective ‘best interests’ principle, which directly contradicts international legal standards such as the right to equality before the law protected by Article 12 of the UN Convention on the Rights of Persons with Disabilities. Secondly, she highlights that whilst the concept of ‘mental capacity’ is embedded within health and social care practice, there is a limited awareness of ‘legal capacity’. As a result, decision-making has to date focused on daily tasks, like what to eat or what to wear, and there is less support for significant decision-making available to people with intellectual disabilities. And thirdly, Professor Harding’s team found that care professionals were not always sure how to support intellectually disabled people to make more complex decisions about medical, financial and legal matters.

The Everyday Decisions research and Supported Will-Making follow up study included qualitative interviews with intellectually disabled people, their supporters, and health and social care professionals with experience of supporting decision-making. Professor Harding’s team found that there was not very much awareness and understanding of disabled people’s human rights, and that disabled people and care professionals would welcome more training about disability human rights, and especially about supporting decision-making. 

Changing current provisions

Professor Rosie Harding has called for and shaped necessary reforms to the Mental Capacity Act. In 2019 she submitted written evidence and a policy briefing to the House of Lords concerning the Mental Capacity (Amendment) Bill, calling for the new guidelines to better reflect international standards, and for the implementation of a more robust understanding of ‘deprivation of liberty’ rather than a narrow and confusing statutory decision.

Professor Harding continues to work closely with bodies such as the Law Commission for England and Wales, and he Department for Health and Social Care to support them in transforming law, policies and practice to better safeguard the rights of intellectually disabled people. In addition to this, Professor Harding is a charity trustee of Changing Our Lives, and supports NGOs such as Advonet and CHANGE with their work in improving decision-making support in health and social care practice.

Research team

  • Dr Esen Ezgi Tascioglu, Research Fellow
  • Magdalena Furglaska, PhD Candidate

The Everyday Decisions Project was funded by the British Academy and carried out by researchers at the University of Birmingham. The follow up study on Supported Will-Making was funded by the University of Birmingham ESRC Impact Accelerator Account. Ethical approval for both projects was granted by the University of Birmingham Humanities and Social Sciences Research Ethics Committee.