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Upholding rights of people with cognitive disabilities

A report commissioned by the Disability Royal Commission, and authored by La Trobe University researchers, has recommended a policy overhaul to ensure that all people living with cognitive disability are empowered to make decisions about their lives.

The report recommends that ‘supported decision-making’ be implemented across all sectors that interact with people with disabilities, and supporting people to make their own decisions should be a core skill for all staff across health, community care, legal and financial sectors.

The research found that better training in rights-based decision support for professionals, health workers and others in the community – including family members and other informal supporters – was needed when interacting with people living with intellectual disabilities, acquired brain injuries, mental health conditions and dementia.

Lead author, Professor Christine Bigby from the Living with Disability Research Centre at La Trobe University, said the report had a particular emphasis on people with profound disability, who were too often excluded from supported decision-making initiatives and often had ‘substitute’ decisions made on their behalf.

“We know that many people see supported decision-making in very black and white terms – either someone with cognitive disabilities can be involved in decisions that affect them, or their disability is perceived as too severe for them participate, and thus they need others to make decisions on their behalf,” Professor Bigby said.

“However, the reality is much more nuanced; our research shows that with the right support, understanding and frameworks in place, even those living with profound cognitive disabilities can be part of decision-making that affects their lives.”

Professor Bigby said that as well as being a basic human right, the ability for a person with a disability to have control over their own life is vital to wellbeing.

“People’s sense of control and autonomy is completely undermined if they are left out of decisions that affect them,” Professor Bigby said.

“We need to understand that supported decision-making exists on a continuum, and there are many different ways in which people with cognitive disabilities can be part of making decisions – even if they do not articulate their preferences in traditional ways.”

Professor Bigby said the aged care and health sectors, in particular, were lagging behind in terms of recognising the importance of supported decision-making.

“We need clear policies to embed supported decision-making for anyone who requires it – including people with dementia who are living in aged care,” Professor Bigby said.

“A clear nation-wide approach to this issue will ensure some of our community’s most vulnerable citizens are protected – including those who don’t have strong existing networks of family, carers or volunteers.”

The report, Diversity, Dignity, Equity And Best Practice Framework for Supported Decision-Making, recommends steps that can be taken at the policy level as well as at the sector level.

More about the Report:

• The research involved a survey and review of literature and research related to supported decision-making, as well as focus groups and individual interviews with a cross-section of 77 people with cognitive disabilities, family members, representative groups, policy makers and advocates.

• Researchers found there is no shared understanding or definition of supported decision-making, however the benefits are widely acknowledged.

• The Report recommends a principled approach to supported decision-making, which understands it as a continuum of decision support – this includes a person being supported to make their own decisions as well as decisions made based on a supporter’s interpretation of the person’s will and preferences.

• The Framework proposed is designed to guide all supported decision-making legislation, policy, programs and practice across all jurisdictions, service systems, people with cognitive disabilities, types of decisions and contexts in Australia.

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