New report identifies lessons from Australia in supported decision-making
Published: 2 Jun 2017
A new report, ‘Supported Decision-making: Learning from Australia’, by Jan Killeen, a former Director of Public Policy for Alzheimer Scotland, calls for radical reforms across the UK which recognise the fundamental right of adults with cognitive impairments to be supported to make their own decisions.
The report draws on observations from a six week research trip which Jan conducted in Australia in the autumn and winter of 2016, and which was enabled by a Winston Churchill Memorial Trust Travelling Fellowship Award.
Australia is the first country in the world to pilot ‘Supported Decision-making’ projects in response to the UN Convention on the Rights of Persons with Disabilities (UNCRPD), which came into force in 2008. The Convention requires all its signatory States, which includes the UK, to ensure decision-making support is provided for all adults with cognitive disability who need it, no matter how severe their disability.
Supported decision-making aims to give people with cognitive disabilities more control over their own decisions through the process of good support. Through travelling to Australia, Jan aimed to find out how supported decision-making works in practice.
“People with cognitive disabilities, such as learning difficulties, acquired brain injury or dementia, face additional challenges with regards to making decisions. The rights of these people have been systematically undermined because it is commonly thought that they are not capable of expressing their wishes or that they lack the capacity to make decisions.
It was wonderful to observe how empowering the support for decision-making workshops were for young people with cognitive disabilities and for their family member supporters. At the end of one workshop a young man exclaimed happily ‘Now I’m the boss’.
However, many people I spoke to reported that they are often hampered by the lack of legal authority to access essential information to help the ‘decision-maker’ weigh up options and arrive at choices. This is also recognised as a major barrier in the UK for family members and friends who have multiple and sometimes complex tasks in providing care and support. Too often they are forced into making an expensive yet unnecessary application for guardianship” –Jan Killeen
The report describes different models of supported decision-making that Jan witnessed, and makes a series of recommendations aimed at the UK and devolved governments, as well as other statutory bodies and civil society. Recommendations directed to the Scottish Government endorse the proposals advanced in the Mental Welfare Commission’s report ‘Mental Health and Capacity Law: the Case for Reform’ published on 31 May 2017.
One of the report’s key recommendations for the UK is for provision for the appointment of a ‘registered supporter’, who would be authorised to access data-protected information to support a person with cognitive disability to make decisions. Northern Ireland already has this in place through its Mental Capacity Act 2016, as does the State of Victoria in Australia.
“The forthcoming review of UK compliance with the UNCRPD by its monitoring Committee this July has the potential to be a welcome catalyst for change and, together with the recent reviews of capacity/incapacity laws in the UK, represents an important step forward. However, if governments are serious about ensuring equality of all citizens then additional resources will be needed to support the implementation of reformed capacity/incapacity legislation which complies with our commitment to the UNCRPD” –Jan Killeen
Read Jan’s report here
Notes to Editors
About Jan Killeen
Jan Killeen is a Winston Churchill Memorial Trust Fellow, a Dementia Policy Advisor, former Director of Public Policy at Alzheimer Scotland and former Commissioner (part time) and Board Member of the Mental Welfare Commission for Scotland. Jan coordinated the campaign for law reforms which led to the introduction in 2000 of the Adults with Incapacity (Scotland) Act as the first major piece of legislation to be passed by the Scottish Parliament. Later she was commissioned by the Scottish Government to research the effectiveness of implementation of the Act, and was seconded to co-ordinate an action plan, leading to improvements in 2007. She co-authored the ‘Charter of rights for people with dementia and their carers in Scotland’ (2010) and published research on the support needs of family members with powers of attorney and guardianship (Alzheimer Scotland 2012).