What Is Supported Decision-Making?
Supported decision-making provides the tools and ability for individuals to maintain choice and control in directing their lives. An alternative to the guardianship model, supported decision-making enlists a trusted group of people to support children, people with disabilities or cognitive differences to make important decisions.
Someone may utilise the supported decision-making model when making decisions in a legal, healthcare, housing and educational context. Support networks are made up of family members, friends, social workers - anyone the individual knows and trusts - to make informed decisions aligning them with their goals, values and preferences.
The same way a ramp allows access to a physical space, trusted allies in supported decision-making have the potential to advocate whilst endorsing individual rights and fostering self-advocacy.
Why is it important?
Dominant narratives still project views towards disability as a personal tragedy, necessitating a cure or medical care to overcome limitations, often enabling professionals to practise paternalistic decisions making on the lives of those with disability. This reinforces an enduring pattern where people with disability are “spoken about” instead of listened to as experts about themselves.
Historically, people with disabilities and children were expected to give up autonomy due to low expectations and negative assumptions towards their ability to understand competing factors and make decisions.
Limited experience of choice-making can leave individuals feeling they have lost their ‘voice’ and ability to express their own preferences. Assuming an individual’s capacity for decision-making reduces their opportunities to build self-determination skills, causing a greater risk of social isolation, low self-esteem and confidence.
A study by Deakin University interviewed people with psychosocial disability as choice-makers in the NDIS, with a participant noting:
‘I think it’s [choice] one of the most important things you can have because I think a lot of mental ill-health and a lot of ill-health, and just lack of emotional wellbeing, comes from people feeling they haven’t got a choice.’
Studies show when children express self-determination, it leads to feelings of independence, hope and autonomy. National Library of Medicine explores young people’s experience of acute mental health inpatient care and cooccurring feelings of relatedness, autonomy and competence. They found that meeting these needs through self-determination theory was more likely to increase patient well-being, intrinsic motivation and experiences of safety.
Opportunities to exercise self-determination - the right for people to shape their own life - contributes to personal authority and a sense of identity. Enshrined in international agreements and documents like the UN Convention of the Rights of the Child and UN Convention of the Rights of People with a Disability, the fundamental principle is also preserved in the NDIS Code of Conduct and Practice Standards.
How does Supported Decision Making operate in the NDIS?
The underpinning principle and design of the NDIS allow participants to make choices and maintain control over their supports. In Chapter 12 of The National Disability Insurance Scheme An Australian Public Policy Experiment, Mhairi Cowden outlined three distinct duties for choice and control to perform:
Allow people with disability to choose their goals and aspirations, avoid paternalistic decision making and support participants to manage their funding themselves where possible.
Ensure a range of choice is available within the disability market, and exercise their choice in the planning process.
Cowden discloses their own experience when it comes to parenting does not always consider personal autonomy... acknowledging it’s often far easier to make decisions than seek input from a toddler.
‘It is quicker for me to choose her clothes and dress her in the mornings than to allow her to do it herself. But it is in allowing her to do so that she develops independence and her own capacities. My point here is that choosing for others, respecting independence and adopting strategies to develop independent decision-making, is complex. Parents and other carers need support to do this well.’
Supported decision-making is essential to build autonomy and self-determination among groups who, historically, weren’t given choice and control. Avoiding paternalistic and disempowering approaches to decision-making upholds an individual’s human rights, even if the decision-making is not what their support networks would have chosen.
What is dignity of risk?
Dignity of risk recognises that the right to make decisions in pursuing a life of one’s choosing carries inherent risk and the potential for failure. The principle promotes people living a life of their design without unnecessary protection or restriction from making decisions to prevent risk.
An example in the health and disability interface is an individual taking medication with a drowsiness side effect, but has expressed a desire to stay up late. Their support network must restrain from defaulting to paternalistic decision-making, concerned of their risk of being tired or adjusting to new medication, to let the participant express their choice.
Taking risks is an inherent part of life and a right for everyone to exercise.
The role of the support network is to collaboratively respond to an individual's expressions of preference by acknowledgement, interpreting and acting on it.
Barriers and enablers to exercising choice in the NDIS
Deakin University's interviews emphasised the barriers and enablers to maximising a participants' decision-making capacities in the NDIS.
Listed are the main themes emerging from participants on barriers restricting their choice and control:
Lack of choice in structured funding
Inappropriate plans not addressing true needs and goals
Limited information/clarity on what their funding means
NDIA anonymity and limited communication with NDIA
Inconsistent funding across participants
Worry over upcoming reviews
The report notes although the point was not specifically investigated, over half of the participants interviewed explicitly stated NDIS funding had made their life easier or better. It was often the first funding ever received, enhancing their opportunity to exercise choice and control.
Suggested improvements from participants included the importance of having an advocate and self-efficacy, knowing what is good/best for them and identifying clear goals.
Supporting NDIS participants in their decision-making is fundamental to upholding choice and control, fostering independence and enabling our participants to thrive in the life of their choosing. We promote supported decision-making and self-advocacy in our practice and commitment to our clients.
Ruby Wheeler