Supported decision making – experiences, approaches and preferences

Dr Gavin Davidson, Dr Berni Kelly and Dr Lorna Montgomery (QUB) –

Making decisions about your own life is a key aspect of independence, freedom and human rights. Mental health law has previously allowed compulsory intervention even when a person has the decision making ability to decline intervention. This discriminates against those with mental health problems and intellectual disabilities. In May 2016 the Mental Capacity Act (Northern Ireland) became statutory law, although may not be implemented until 2020. In contrast to other countries this law will replace rather than be in parallel to a mental health law. This is a unique and progressive development which seeks to address the discrimination of separate mental health law. A core principle of the new Act is that people are “not to be treated as unable to make a decision…unless all practicable help and support to enable the person to make a decision about the matter have been given without success” (Article 1(4)).

There are people who, without support, would be assessed as incapable of making certain decisions but with the appropriate support are capable of making those decisions, and so to not provide that support infringes their rights, undermines their autonomy and reinforces their exclusion from society. There is very limited research evidence available about people’s experience of the range of approaches provided to support decision-making; what approaches work for whom; and what people’s preferences are for support. This evidence is urgently needed to inform the Code of Practice for the new Act and the wider implementation process.

This presentation provides a summary of findings from a research project which explored how people have, or have not been, supported to make their own decisions. It was funded by Disability Research on Independent Living and Learning (DRILL) and used a coproduction approach between disabled people, Praxis, Mencap and Queen’s. The project involved peer researchers interviewing 20 people with mental health problems and 20 people with intellectual disabilities, to gain an in-depth understanding of their experiences of supported decision-making and their preferences and ideas for how decision-making should be supported in the new legal framework. 

This seminar took place on 7 February 2018

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