Supported decision-making needs to be implemented across all sectors to ensure people with cognitive disability are empowered to make their own choices, says a new report commissioned by the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.
Diversity, Dignity, Equity And Best Practice Framework for Supported Decision-Making, authored by La Trobe University, reveals a high need for improved rights-based decision training for healthcare, community care, financial and legal professionals so they can better support people with intellectual disabilities, acquired brain injuries, mental health conditions and dementia.
Lead Author and Director of the Living with Disability Research Centre (LDRC), Professor Christine Bigby, says people with disability regularly have decisions made on their behalf, excluding them from many personal-life discussions.
“People’s sense of control and autonomy is completely undermined if they are left out of decisions that affect them,” says Professor Bigby.
“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.
“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 says there are many ways for people with cognitive disabilities to be involved in the decision-making process even if they cannot articulate their preferences in traditional ways.
As part of the research, 77 people with cognitive disabilities, their family members, representative groups, advocates and policy makers were interviewed in focus groups and individually.
Although the benefits of supported decision-making were acknowledged by many participants, such as emphasising the importance of social connections and promoting positive attitudes towards people with disability, there was no clear consensus on how it can be defined or achieved.
The Report recommends legislative framework should be put in place to ensure people with a cognitive disability have a principled approach to supported decision-making.
Through legal safeguards, abuse, manipulation and coercion of people with cognitive disability can be reduced.
“We need clear policies to embed supported decision-making for anyone who requires it, including people with dementia who are living in aged care,” says Professor Bigby.
“A clear nationwide 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 also reinforces the need to have people with cognitive disability at the centre of policy-making reform and initiatives to ensure their voices are heard when designing processes for support decision-making.
This means they are supported, while any decisions made by a family member, friend or carer accurately reflect the person with disability’s own will and preferences.
That control over your own life is a crucial aspect of maintaining positive wellbeing, says Professor Bigby.