Continuing our blog post series on the Disability Royal Commission’s Final Report, today we look at supported decision-making. This topic is a strong focus of Volume 6: Enabling autonomy and access, and reflects findings from several Public Hearings including Public Hearing 30 and Public Hearing 32. The recommendations target a move away from substitute decision-making in favour of supporting participants to make their own decisions wherever possible, increasing participant autonomy.
The recommendations centre around legislative protections for supported decision-making, particularly advocating for the following supported decision-making principles in Recommendation 6.6:
- Principle 1 – Recognition of the equal right to make decisions
- Principle 2 – Presumption of decision-making ability
- Principle 3 – Respect for dignity and dignity of risk
- Principle 4 – Recognition of informal supporters and advocates
- Principle 5 – Access to support
- Principle 6 – Decisions directed by will and preferences
- Principle 7 – Inclusion of safeguards
- Principle 8 – Co-designed processes
- Principle 9 – Recognition of diversity
- Principle 10 – Cultural safety
While the principles in their entirety haven’t yet been codified or integrated into the Practice Standards, they do act as guidance for best practice decision-making processes for providers. At present, there is some inconsistency between jurisdictions regarding the protections and approach to decision-making rights and capability. Some jurisdictions already have aspects of these principles in their existing legislation, whereas others do not.
Implementation of the Recommendations of the DRC would therefore mean people with disability would maintain the same rights when it comes to making their own decisions regardless of where they live in Australia.
Principle 1 - Recognition of the equal right to make decisions
The first principle affirms that every person has an equal right to make decisions. People living with disability should not be excluded from making decisions about their lives. Recognising this principle is central to the concept of supported decision-making, as it places the person at the centre of their own care, with support to exercise their right to make decisions, rather than others making decisions for them.
Principle 2 – Presumption of decision-making ability
This principle sets out a base line assumption that everyone is capable of making their own decisions. A person should never be treated as if they’re incapable of making decisions – an inability to make a decision on one topic or area does not exclude a person from making other decisions. Having a disability cannot be the sole justification for determining that someone does not have decision-making ability. Instead, that assessment should be made based on the specific and unique circumstances of the decision being made and the person’s understanding of that decision and its consequences. A person’s disability should only be relevant in assessments where that disability impacts their ability to make or carry out decisions, and should never be an automatic exclusionary factor.
Recommendation 6.7 focuses further on decision-making ability, endorsing legislative changes that change how capacity (or capability) assessments are undertaken, with the starting point for these assessments being an assumption that a person is capable, moving the burden of proof to those seeking to prove incapability, rather than the added burden on people with disability to prove that they are capable.
Principle 3 – Respect for dignity and dignity of risk
A major part of the ability to make decisions is the right to make decisions that involve some level of risk. Where a person with disability understands the potential risks involved in making a decision, but elects to make that decision anyway, they should be able to make that choice in the same way any other person is allowed to. Supported decision-making processes should help people with disability to understand the potential risks involved in their decisions, and advise, but should not actively discourage particular choices simply because there may be a level of risk to the participant.
Principle 4 – Recognition of informal supporters and advocates
This principle highlights the important role of informal supporters, advocates and the support network for people living with disability. In addition to formally recognised roles, where a person or group may be legally recognised as a supporter, others involved in a person’s life or care may also participate in the supported decision-making process.
Principle 4 advocates that people in these categories should be acknowledged and respected. Strong informal support relationships may help avoid reliance on more complex formal supported decision-making arrangements, and avoid substituted decision-making. The involvement of people whom a participant knows and trusts may make it easier to convey support in a more tailored manner, and more effectively achieve positive outcomes.
Principle 5 – Access to support
Whose responsibility is it to provide information to people requiring support? Recommendation 6.13 is that public advocates and public guardians should provide “information, education and training on supported decision-making to people requiring supported decision-making and their families, private supporters and representatives (present or prospective), disability service providers, public agencies, the judiciary, tribunal members and legal representatives”.
The wide scope of this recommendation both highlights access to information as an integral aspect of decision-making, and indicates supported decision-making as best practice even outside support services.
For providers, information and education may include accessibility aids such as Easy English or interpreted resources to help participants understand their rights, the decision-making process, and potential outcomes from each decision. These types of aids may also be useful additions for other areas of focus in the principles, particularly Principles 9 and 10 which focus on diversity and cultural safety.
Principle 6 – Decisions directed by will and preferences
The DRC report asserts that “a principled approach to supported decision-making requires a person’s stated or perceived ‘will and preferences’ to be at the centre of decision-making“.
This principle directs that, just as those without a disability are not required to rationalise their decisions or prove that their choice is in their best interests, people with disability should have the same rights to make decisions about their own life, even where the decision may not be the ‘best’ option.
It’s important to understand that the will and preferences of an individual are those expressed or indicated by that individual, and this is not the same thing as an organisation’s view of what is in the ‘best interests’ of that person. The ‘best interests’ approach should not be used, as it can override the choice of a participant, and take away their autonomy and right to dignity of risk.
For situations where a participant may be unable to express their will or preferences, for example where they are medically incapable, non-verbal, or there is limited access to communication aids, processes should be in place to refer to what they want or would want, for example using care plans to record their choices in advance, using a care record to determine a pattern of choices they’ve made in previous situations, and their feedback about their care in those situations, or involving trusted support persons who can provide insight into what they would want.
Principle 7 – Inclusion of safeguards
People living with disability may be at greater risk of abuse or undue influence when making decisions. Principle 7 highlights the importance of safeguards in supported decision-making processes, in recognition of the potential imbalance of power between participants and their supporters/representatives.
Recommendations connected to the inclusion of safeguards include:
- Recommendation 6.9, which recommends decision-making representatives as a last resort and strict guidelines on represented decisions to protect the autonomy of participants, and
- Recommendations 6.35 and 6.36, concerning the elimination of restrictive practices, including as a method of coercion or to influence the behaviour of a person with disability.
Principle 8 – Co-designed processes
Processes for supported decision-making should be designed with the input of various stakeholders who will be able to provide insight into their requirements for supported decision-making policies and procedures. That way, people with disability have the opportunity to share their lived experience, and how different approaches may impact their lives.
Principle 8 specifically highlights the involvement of people with cognitive disability, their supporters and representative organisations in co-design, however best practice could also include the involvement of staff, and ensuring the group of people consulted reflects the diversity of the organisation and recipients of care. On an individual level, participants should also be given the opportunity to co-design their own experience with decision-making.
Co-designing these systems should also be a continuous process. As the demographics of your organisation change, so too do the needs of participants. So, feedback, complaints and consultation processes become a vital part of identifying areas of improvement, to ensure that the organisation’s supported decision-making processes still meet the needs of participants.
Principle 9 – Recognition of diversity
Principle 9 focuses on ensuring the diverse experiences, identities and needs of people with disability are considered and recognised. It is connected to Principle 10 (Cultural safety), but focuses more on the individual’s specific background, and how their varying needs and experiences intersect with one another.
The principle recognises differing approaches may be necessary for different participants. Therefore, a flexible and adaptable approach to decision-making should be adopted for organisations to best respond to the diverse needs of their participants.
Organisations should consider how they can tailor their existing processes to meet the different needs of each individual with disability. For example, by giving participants with cognitive disability more time to make decisions so they can consider them in another environment, or access support to understand their decision options. Recommendations 6.1, 6.2 and 6.3 all connect to this principle, regarding the need for increased accessibility in information, resources and communication, particularly relating to Auslan interpreters, and access to interpreters more generally.
Also included in this principle are mental health and trauma-informed care considerations, recognising that people with disability who are affected by mental health or have experienced trauma may require different support.
Principle 10 – Cultural safety
Principle 10 places focus on First Nations people and culturally and linguistically diverse people with disability. In addition to addressing the diversity requirements of Principle 9, organisations should also evaluate the cultural safety and suitability of the service environment.
Public Hearing 30 raised questions about the ways in which a person’s culture may impact their decision-making ability, and also how culture can act as a support in the decision-making process. Organisations should ensure that their supported decision-making processes and service environment are culturally safe, and sensitive to the cultural needs of each participant, maintaining connections to culture and community.
One way for organisations to improve their cultural safety is by collaborating and connecting with local cultural organisations. Having an established network may support organisations by providing advice on culturally appropriate supported decision-making strategies, as well as providing access to people within a person’s cultural community who may act as informal supporters for that person when making decisions.
Where to next?
Most of the reforms in the DRC recommendations are targeted at government level rather than provider level, but they do also indicate the direction of best practice for providers and possible next steps for reform.
Current reform work in the Aged Care sector also has supported decision-making as a focus, reflecting a broad cross-sector scope and changing attitudes to decision-making. Recommendation 10.6 would codify supported decision-making in the National Disability Insurance Scheme (Quality Indicators for NDIS Practice Standards) Guidelines 2018 (Cth), codifying specific actions for providers.
To aid providers in actioning their supported decision-making requirements, Recommendation 10.7 endorses a co-designed practice guide on supported decision-making for service providers that is consistent with the decision-making principles.
Supported Decision-Making and SPP
In line with the increased focus on supported decision-making in both the DRC recommendations and the Aged Care sector, we’ve recently updated and expanded on our supported decision-making resources, including:
- Info: Supported Decision-Making (Easy English)
- Policy: Supported Decision-Making and Dignity of Risk
- Policy: Supported Decision-Making and Dignity of Risk (NDIS)
Our Easy English resource in particular may be useful for providers to improve their communication around supported decision-making, particularly for providing information to those with increased communication barriers.
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