Queen's University Belfast, Praxis Care and Mencap are the latest to receive funding as part of a previously funded £5 million research programme into independent living for disabled people.
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 statute 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. Supported decision making should be considered as an important part of a continuum of decision making from autonomous decision making through to substitute decision making. Law and policy have tended to focus on either end of the spectrum and have approached capacity as if people are either globally capable or incapable, but most people require some level of support with decision making.
There is very limited research evidence available about disabled people’s experiences 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 research project is exploring 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 is using a coproduction approach between disabled people, Praxis, Mencap and Queen’s. The project involves 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. The project therefore aims to provide an overview of approaches to support and what people are identifying that works for them. It is intended that this will inform how the new support principle should be implemented in practice.
DRN members involved in the study are Dr Gavin Davidson, Dr Berni Kelly, Dr Rebecca Irvine and Dr Alison McLaughlin. For more information contact Dr Gavin Davidson