Most people do not notice the decisions they make throughout every day which determine what their day will be like. For example, what time to get up, what to wear, whether to turn the radio on, whether to exercise before or after breakfast or whether to have the day off. Too often decision making only becomes visible when ‘big decisions’ need to be made—where to go on holiday, whether to apply for a new job, whether to move house. This might be when people stop to think about the processes involved in decision making and why these are important. All the decisions a person makes, whether little or big, influence their life in some way, and contribute to their sense of autonomy and self-determination: the choice and control a person has over their life. Yet too often people with disabilities are denied the right to make decisions and others make decisions for them. This may occur informally, through the everyday actions of supporters—be they staff or family members—or formally when supporters have a specific mandate, having been appointed as a person’s nominee or guardian. Denying the right of people with disabilities to make decisions happens for many reasons: fear of risks, paternalistic attitudes that people are incapable of understanding the options or of knowing what is best for themselves, rigid service systems organised around managerial needs or staff preferences—think for a moment about rosters and working hours—or simply a lack of supporter’s time or skills to provide good support for decision making.

This chapter considers the significance of decision making to the lives of people with disabilities and changing expectations about their rights to participate in decision making since the 2006 United Nations Convention on the Rights of Persons with Disabilities. The chapter explains the processes and describes the skills required for the practice of good decision support with people with disabilities, through making decision making visible and the need for support explicit.

Why Decision Making Is Significant

The right to make decisions about one’s own life and be involved in collective decisions about civic and political issues that impact on communities through, for example, casting a vote or participating in an advisory group are important features of citizenship and human rights (United Nations, 2006). Choice and control by people with disabilities is a core theme of contemporary disability policy. It is realised through individuals making decisions about things such as their personal goals, preferred supports and types of services. Indeed, the shift to individualised funding through schemes such as Australia’s National Disability Insurance Scheme (NDIS) relies on a marketplace of services and people with disabilities being consumers and making decisions about which services to purchase. In this way not only do individuals control what services they receive, but as part of the bigger consumer group their decisions help to shape the type of services or organisations that thrive and those that don’t. In theory at least, decisions by consumers in market systems drive up service quality and determine what is produced (Considine, 2022).

Making decisions is important for psychological and social wellbeing. It improves self-confidence, and by increasing a person’s sense of mastery over their environment helps in developing skills and a sense of self. In the excerpt below, a parent of a young man with intellectual disability talks about the impact on her son when she tried to give him more support to make his own decisions.

He’s making more and more decisions himself. Like, smaller ones but he’s taking ownership of them a little bit more. So, in terms of what he wants to eat, where he wants to eat sometimes if we’re not eating at home, what he wants to wear. … He just beams. He’s a different person. There’s a smile on his face. His shoulders are upright and it’s like, ‘I’m choosing this and I’m making it happen. I’m not waiting for someone else to lead me’. (Bigby et al., 2022, p. 6362)

This isn’t only relevant to people with mild intellectual disabilities, as the comments from a parent of a women with severe intellectual disabilities illustrate. He describes the noticeable changes to his daughter’s communication and self-determination as he tried to pay more attention to interpreting her preferences.

…a little bit of increase, the way that she communicates things…she has become more stubborn if she doesn’t want to go somewhere. Like if it’s time to leave the house and she’s not ready or doesn’t want to go, it’s actually become more difficult to convince her to go to the front door. (Bigby et al., 2022, p. 6362)

In contrast, it can be belittling and hurtful when supporters fail to respect a person’s preferences or simply take over their decisions. In this excerpt, a self-advocate explains what this feels like for him.

There have been times that supporters have treated me like a child, telling us what to do, not as an independent person. We can feel like we’re looked down upon a bit. … When you’re an adult, you want to be able to be independent and do what you want, but as well as … being treated fairly with whatever decision you want to do in a very respectful fashion (Bigby et al., 2023, p. 32 and unpublished data).

Respecting the rights of people to make decisions for themselves also sends powerful messages that help to counter paternalistic public attitudes. There is a sense too that the intentional processes of supporting people with disabilities to make their own decisions act as a safeguard against abuse or exploitation, through putting in place principles that guide practice and the chances of more than one person being involved in decision support. As self-advocates say about support for decision making:

If everyone’s listening to me, then I’m much likely to be living the life that I want to live and be free of those abuses. (Bigby et al., 2023, p. 384)

If you have the right supports, you can gain confidence – you do something with support such as catching a bus and you end up having the confidence to do it on your own. (Bigby et al., 2023, p. 31)

Taking Away Rights to Decision Making

Despite personal and wider social benefits of making one’s own decisions, a significant body of research suggests that people with intellectual disabilities or other forms of cognitive impairment are denied the right to make decisions (Bigby et al., 2015). This ranges from day to day decisions at home or the community, where a support worker’s preferences may swamp those of the person they are supporting, to less frequent decisions about goals, planning for services, purchases or health related issues. For example, two studies about NDIS planning found that all but one of the participants with mild intellectual disabilities reported that a family member had largely determined what was in their plan and overridden, failed to listen or silenced their own perspective (Bigby, 2020, p. 7). This is indicative of the failure of systems such as the NDIS to translate policy into practice. It is not sufficient, as the NDIS legislation does, to assert that all people with disabilities can make decisions. Rather systems must embed expectations around support for decision making into their operations and ensure there are processes for at least scrutinising how supporters arrive at their interpretation of a person’s preferences.

Supporters may take over decision making in the moment—by neglecting to consult a person about their preferences or overriding them—or supporters may subtly try to influence a person’s decisions. Subtle influences include, for example, limiting the options they support a person to consider—‘you can have salad or vegetables with dinner’—or by framing some options more favourably than others—‘wouldn’t you prefer to go a new sports centre rather than the usual one where you are not likely to meet any new people’.

Decision making rights may be formally removed from a person with disability through the appointment of another person to make decisions for them. That person is known as a substitute decision maker and may be given the power to make decisions they consider to be in the ‘best interests’ of the person. Appointment of substitute decision makers goes as far back as the Middle Ages, although their powers, the terminology and mechanisms used have evolved over time and differ between countries. Examples of mechanisms for appointment of substitute decision makers for people with disability in Australia include the nominee provisions of Centrelink and the NDIS, the variously named tribunals in each State and Territory with power to appoint guardians and financial administrators, and State and Territory legislation to appoint ‘persons responsible’ for health related decisions if a person is deemed not to have capacity to make a decision for themselves (Bigby et al., 2023). Appointments such as these reflect a way of thinking about decision making that is contrary to universal human rights and assert a person must have capacity to make their own decisions; that is, they must understand the decision, the available options, the implications of their preferences and the potential risks of harm these may entail.

Notably, since the introduction of the NDIS a whole new class of nominees has arisen and the number of guardians appointed for people with intellectual disabilities has increased substantially. These are perhaps unintended consequences of the NDIS Act which embraces the presumption of capacity (National Disability Insurance Scheme Act 2013, s. 17A (1)). But this may also be due to the increased opportunities the scheme presents for decision making, coupled with the necessity for people with disabilities to enter into individual contracts as customers of disability services and uncertainty about the legal standing of some people to do this.

The Right to Support with Decision Making

The Convention on the Rights of Persons with Disabilities (CRPD) and, more recently, in Australia critiques of the NDIS have heightened the need for new ways of thinking about decision making by people with disabilities and reform of laws and policy. Article 12 of the CRPD articulates rights to autonomy and self-determination by recognising the right of people with disabilities to ‘enjoy legal capacity on an equal basis with others’ and requires State parties to ‘take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity’ (United Nations, 2006, Article 12 (2)–(3)).

Although Article 12 is framed in a somewhat legalistic manner, subsequent work on its meaning calls for the abolition of all forms of substitute decision making (United Nations Committee on the Rights of Persons with Disabilities, 2014). In its place the concept of supported decision making is promoted as a framework for upholding the decision making rights of people with disabilities. Supported decision making rests on four principles similar to those proposed in 2014 report by the Australian Law Reform Commission:

  • Principle 1: The equal right to make decisions All adults have an equal right to make decisions that affect their lives and to have those decisions respected.

  • Principle 2: Support All people who require support in decision-making must be provided with access to the support necessary for them to make, communicate and participate in decisions that affect their lives.

  • Principle 3: Will, preferences and rights The will, preferences and rights of people who may require decision-making support must direct decisions that affect their lives.

  • Principle 4: Safeguards Laws, legal and policy frameworks must contain appropriate and effective safeguards in relation to interventions for people who may require decision-making support, including to prevent abuse and undue influence (Australian Law Reform Commission, 2014, p. 11).

In essence these principles assert that people with disabilities have the right to make decisions about their lives, to have the support they need to ensure that all decisions reflect their short term preferences and the longer term values that direct their lives. Further, the principles assert that people with disabilities are protected from the influence or conflicts of interests of supporters.

The abolition of any form of substitute decision making, together with the application of these principles of supported decision making in the real world, raises some very difficult issues. For example:

  • How do the principles apply to the situation of people with profound intellectual disabilities who are not able to participate directly in decision making no matter how skilled the supporter and whose preferences will have to be interpreted by supporters?

  • How to reconcile competing rights of people with disabilities—the right to be safe and the right to make decisions?

  • What is society’s tolerance for the risk of serious harm to a person with disability that may result from their right to make a decision?

  • What safeguards will be effective but do not remove the right of a person to make decisions?

  • How can the trustworthiness and neutrality of supporters be ensured?

These difficulties help to understand why the principles of supported decision making have not been fully incorporated in law in Australia or elsewhere, and why supported decision making remains an uncertain and contested concept.

Recent Australian research for the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (2022) suggests a way of thinking about supported decision making that tackles some of these difficult questions. It does this by moving away from a binary between substitute decision making being ‘bad’ and supported decision making being ‘good’. Rather it proposes that the will and preferences of a person with disability should take precedence in all decision making situations whoever is making the actual decision. Table 11.1 captures this approach.

Table 11.1 Towards a principled approach to supported decision making
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The principled approach to supported decision making is reflected in legal reforms to guardianship in some Australian states, such as Victoria, which require a substitute decision maker to find out a person’s will and preferences, act in accordance with them and only override them to prevent serious harm (Guardian and Administration Act 2019, Victoria).

Service providers must understand the legal context they work in, as it limits their powers to interfere with a person’s decision making. In particular, it guides support by setting out what they must do if they are concerned about serious risk of harm to a person or there is uncertainty or conflict among supporters. Importantly, good support for decision making does not have to wait for legal or policy reform. For people with cognitive disabilities who use services, most decision support occurs as part of the everyday practice of staff. Outside of the legal sphere, supported decision making is becoming a commonly used term, referring to the:

…everyday, practical process of support whereby an individual has a supporter who assists the individual to make decisions by collecting information, providing explanations, and helping the individual to have their decision-making autonomy respected. (Then et al., 2018, p. 64)

When supported decision making is understood in this way, it can be used by anyone anywhere in disability or mainstream services systems. Direct support workers or support coordinators may directly support a person to make decisions; managers may ensure their staff have adequate training in supported decision making and that organisational policies require the use of supported decision making. Alternatively, advocates or family members may ask about how supporters are providing decision support by getting them to describe the processes they have used.

Evidence Informed Supported Decision Making

People with disabilities can be involved in many different types of decisions when supporters provide the right opportunities and support. Decision making is characterised by diversity; every decision is different and the support a person needs to make each decision will be different. The support needed depends on the decision and its context, the person and their skills and knowledge about the decision and options available, their preferences about the options, the constraints on the options, the risks involved, and the perspectives and skills of the supporters involved and those of other people who may be affected by the decision. For example, a decision about going on holiday will be affected by the person’s:

  • Context: Will they need support to go on holiday, and will it have to fit into their existing schedule of support from service providers?

  • Knowledge of the available options: Do they have experience of the different places they might go or places they might stay?

  • Preferences about where to go, what to do, how to get there, and when to go: What do they like doing. Do they like the sea, nature, walking or sailing? Do they prefer driving or going on a train or flying?

  • Constraints: How much money do they have to spend on a holiday?

  • Other people impacted by the decision: For example, what are the preferences of their friend who is coming along too?

Providing good support for decision making takes time; it relies on knowing a person well, understanding their support needs, their social and service contexts, an attitude that the person is capable of participating in decision making and does have preferences, and a commitment to creating opportunities for decision making. Supporting decision making may happen quickly and many times during a day as part of good Active Support practice (see Chap. 7) or may require dedicated time over several weeks. Self-advocates and service providers describe what good decision support looked like in the following ways:

Three people in my house can’t use an iPad or phone – so need to have a worker who ‘notices things in that person, notices little things that they enjoy…’ or activities they do. Two of them have parents involved but they can’t speak to let their parents know they’re not being supported to make decisions. Sometimes you just need to observe, take the time. (Self–advocate)

... it was extra time and questioning me in all different ways to make sure I understood it. (Self-advocate)

It takes time ultimately to provide supported decision making to an individual. It is based on trust and relationship, so even if you have the skills and go into supported decision making as a profession, with tools for communication support and getting to know the person it takes time (Service provider). (Bigby et al., 2023, p. 80)

The La Trobe Support for Decision Making Practice Framework

The La Trobe Support for Decision Making Practice Framework (The Framework) is an evidence informed framework for supported decision making. Designed for supporters, it describes the principles of practice, the steps involved in decision support, and the range of strategies that can be used. When staff or families are trained to use The Framework and it is built into organisational expectations, they are more likely to provide support aligned with human rights and the principles of supported decision making (Bigby, Douglas, & Smith, 2022; Bigby, Douglas, et al., 2022a; Douglas et al., 2020). As well as a guide for supporters, The Framework acts as a checklist that can be used to hold supporters to account by describing the processes they have used (Fig. 11.1).

Fig. 11.1
7 iterative steps of La Trobe Support. Know the person. Identify and describe the decision. Understand the person's will and preferences. Refine the decision. Consider if a formal process is needed. Reach the decision and associated decisions. Implement the decision and seek advocates if necessary.

La Trobe Support for Decision Making Practice Framework

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The Framework has seven iterative steps and three principles and is delivered through a range of strategies tailored to each individual. The seven steps are common to all decision making support but don’t always happen in the same order: a supporter may move backwards and forwards between the steps.

Step 1. Knowing the Person

Knowing the person is fundamental to person centred and individualised decision support and enables supporters to select the best strategies for each step of the process, such as how to adjust their communication or to scaffold information (that is, structuring the way in which information is shared in order to make understanding easier). Knowing a person requires information about things such as their personality, strengths, weaknesses, skills, likes, dislikes, social connections, aspirations for the future and short term preferences. It can be pieced together from the person themselves and other sources; family members may know about a person’s history, a GP about their health, service providers about their supports and professionals about formal assessments of communication or functional abilities. Whoever is leading the decision support processes should complement information from other sources with their own observations and experiences with the person to build a rich picture about the person.

This step is challenging for paid supporters who come into a person’s life for a specific decision or who are allocated only a little time to get to know them. It may be particularly difficult if you are working with a person with severe intellectual disabilities who cannot tell you about themselves. Supporters need to find and take time to read existing information such as support plans, seek out others who know the person, and spend time with the person as they move through different parts of their daily life. Generic skills such as active listening, observation, giving time to respond, adapting communication, as well as adopting a curious stance are all useful for this step.

Step 2. Identifying and Describing the Decision

This step helps to ensure decision support starts from the beginning, and that other decisions have not already been made without the person. For example, if a supporter identifies the decision as what type of home to move to, they might query when and how a decision to move at all was made. This step helps in being clear about the timing and scope of the decision, when it has to be made, if it is urgent, who else or what formal systems or services should be involved, the potential consequences for the person or others and other associated decisions that might need to be made. For example, a paid decision supporter spent several meetings with a middle aged man with intellectual disability who had sought help in making decisions about using his NDIS funding. The first thing she did was go through each of the goals in the plan with him to prioritise them. They decided that the goal of continuing to work on his anxiety and self-confidence was the most important to him. By knowing about the services the man was already using, the supporter identified the decision as being about finding a good psychologist and whether he should use his NDIS funds to continue to see the psychologist he had seen previously (but who could no longer be funded by the health system) or find a new one.

Step 3. Understanding the Person’s Will and Preferences for the Decision

This step involves ‘blue sky thinking’, in which supporters assist the person to explore all the possible options, understand the implications of each, and think about which they prefer. This step may be as straightforward as identifying options and discussing the pros and cons of each. For example, helping a person to think about the different types of fitness classes they could attend, by listing their previous classes, talking about their experiences of each and then ranking them from best to worst.

Just talking through options may not be a good strategy. A person may not have experienced many of the possible options and find it hard to imagine what they are like and thus what their preferences are. One strategy is assisting the person to try out options and observe their reactions. Similarly, it may also be important for a person to experience the potentially negative consequences of their preferences. Here a risk enabling approach is useful. This involves trying out a risky option but also minimising any potential harm (Bigby, Douglas, & Hamilton, 2018). For example, as part of deciding about travelling independently, a travel trainer might shadow a person as they travel to identify difficulties they encounter and step in if necessary or prepare a help card for a person to give to a stranger.

It is important to take time, listen carefully and explore all the possible options. Supporters must take care not to influence the person in this step by, for example, disclosing their own preferences, filtering out options they don’t like or don’t think are possible, presenting options in biased ways or persuading the person towards those they prefer. Supporters should avoid focussing too much on risks and practicalities, or on making the ‘right decision’ for a person’s wellbeing. A common mistake is to consider the constraints on a decision (Step 4) before exploring all the options (Step 3). This unnecessarily restricts options and means risky or impractical preferences are ignored. Allowing sufficient time to consider options at Step 3 provides the basis for prioritising preferences and understanding constraints at Step 4.

Step 4. Refining the Decision and Taking Account of Constraints

In this step, supporters assist the person to prioritise the options they prefer and take account of constraints without compromising their preferred decision. A decision is a choice that can be acted upon, either by the person themselves, supporters or advocates. Decisions are constrained by many things, and preferences must often be refined to take account of them. Constraints are things like money, time or support, the impact on others, attitudes of others, organisational policies or risks to safety or longer term wellbeing. For example, refining preferences to take account of money may mean helping the person select a purchase within their budget or postpone it until they have sufficient funds. Risk of potential harm is a common constraint and strategies for enabling risk can be suggested, such as equipping a person to be confident to seek help if they get lost on public transport. But rather than helping someone to experience consequences of risky options to help determine their preferences, the aim of enabling risk at this step is to help find ways of carrying through preferences into decisions by minimising any potential harm.

Thinking about a person’s will as well as preferences is useful at this step, especially if constraints seem insurmountable. A person’s will is the long term vision for their life, such as wanting to be healthy or independent, whereas preferences are immediate wishes or desires (Szmukler, 2019). A person’s preferred option for a decision about travelling more independently may be to learn to drive. This may be so constrained by their poor literacy skills that it is practically unrealisable. A supporter might assist the person to refine their preference for learning to drive to one that helps them to stay true to their will of being independent but is more practical, such as learning to use the Uber app.

This step highlights how easily supporters can undermine rights to self-determination by emphasising constraints and suggesting alternatives to a person’s preferences. It also requires supporters to consider whether they should take action to override a decision if the constraints on a preferred decision are significant or the risks to a person’s safety great. In considering this, supporters rely on their understanding of a person’s will and exploration of alternatives that are as close as possible to their preferences. As the next step suggests, such actions must be deeply considered and may require use of a formal processes.

Step 5. Consider if a Formal Process Is Needed

This step is influenced by context, and the role and standing of supporters. Most decision support is informal; that is, supporters have no formal legal standing in respect of the person’s decision making. The judgements of decision supporters are guided by their knowledge about disability policy, their own principles or the policies of their employer, and are reliant on their skills and support they get from supervisors or peers. There may be situations that a supporter cannot resolve: when they judge a person’s preferences may result in significant harm, when there is conflict among those involved in the decision or one of the supporters wants to override a person’s preferences. Conflict arises when others question whether a person’s preferences are realistic, accurately reflect their desires or are the result of undue influence or coercion. Many studies, for example, find conflict between accommodation support staff and family members of a person with disability about things such as holiday destinations, meals and dress codes (Bigby, Douglas, et al., 2022b; Bigby et al., 2019).

In many circumstances, where there is no immediate danger, it is preferable for supporters to seek out a process for mediation or appointing a guardian, rather than overriding preferences or leaving conflict unresolved (which often also leads to preferences being disregarded). Using formal processes can mean there are greater safeguards for the person’s rights. Deciding if a formal process is necessary and taking action towards it should include the person themselves as much as possible, and in some situations finding them an independent advocate. The relevant State or Territory legislation and policies of disability support organisations will determine the available options and the steps supporters need to take to instigate a formal process. If a substitute decision maker is appointed, the knowledge of informal supporters will be important in helping to inform the decision making process of the substitute decision maker, remembering that substitute decision makers are increasingly required to make decisions based on the person’s will and preferences unless there is a serious risk of harm to the person or others from doing so.

Step 6. Reaching the Decision and Associated Decisions

In this step a decision is made that reflects the person’s prioritised preferences as closely as possible. In some instances, a decision may be formally recorded and communicated to someone else such as a support coordinator or advocate, who will be responsible for getting it implemented. It is also important to assist the person to think about the consequences of their decision, its likely implications for other parts of their life and the other decisions that may now need to be made. Decisions are like Russian Babushka dolls: they sit within each other, and as one decision is made another may appear. In supporting a person to think about associated decisions, the iterative nature of decision support practice is clear as you loop back to Step 2, by identifying and describing other decisions.

Step 7. Implementing the Decision and Seeking Advocates if Necessary

Acting on a decision is often the responsibility of other people in a person’s life rather than the decision supporter. There are dangers that decisions will not be acted upon if they are not seen by others as important or they don’t agree with them (Burgen, 2016). In such cases an advocate may be needed to ensure a decision is taken seriously and to oversee its implementation. This step helps to illustrate differences between the role of advocates and decision supporters. Advocates often work with a person to get a decision that has already been made to be implemented and decision supporters support the person to participate in making the decision.

Principles of Decision Support Practice

The Framework also has three principles that underpin all aspects of decision support practice. These include Commitment, Orchestration, and Reflection and Review:

  1. 1.

    Commitment to the person and their rights. This principle means supporters have a relationship with the person they support based on equity and respect for their rights. An explicit commitment to a person’s rights helps supporters to avoid inadvertently using the so called ‘best interest test’ as the touchstone for support.

  2. 2.

    Orchestration. This principle points to the shared nature of decision support practice. That means bringing in others involved in the person’s life or who have expertise about the decision at hand. It is based on there being a supporter who leads the process and who draws in and coordinates other paid or unpaid supporters and mediates any differences between them.

  3. 3.

    Reflection and Review. This principle emphasises self-awareness and continuous reflection on practice. Being self-reflective through all steps helps supporters to be conscious of their own influence, values or stake in the decision and better maintain a neutral approach that puts these aside.

The Framework is the basis for a simple checklist to help supporters review and describe their actions at each step of the process, reflecting on the principle and strategies they have used. The free online training resources developed as part of The Framework include this checklist and other tools that can be downloaded (Bigby et al., 2019).

Strategies

Supporters draw on many strategies as they move through The Framework’s steps and apply the principles to their practice. These must be tailored for each individual, and specific to each decision and context. Some strategies have been described in earlier sections, and may include

  • Adjusting communication

  • Listening and engaging

  • Breaking information or steps down

  • Networking

  • Researching options

  • Explaining or illustrating options, consequences and constraints

  • Creating opportunities to experience options and preferences

  • Enabling risk.

These strategies reflect the core skills needed for effectively supporting people with intellectual disabilities to participate in support planning, engaging in meaningful activities and social relationships or participating in communities as discussed further elsewhere in this book. Many are illustrated in free online training programmes developed from research at the Living with Disability Research Centre at La Trobe University. See, for example, resources Develop Skills in Active Support (Bigby & Humphreys, 2023), Supporting Inclusion (Bigby & Wiesel, 2015), Enabling Risk (Bigby, Douglas, & Vassallo, 2018), and Supporting Decision Making (Bigby et al., 2020).

Training in supported decision making and using a framework such as the one described are important catalysts for reflecting on one’s own values and perspectives about the rights of people with disability to make decisions. One mother, for example, said after the training that she would never again see her son as a ‘non decision maker’ (Bigby et al., 2022). Having a point of reference such as a framework or diagram of the steps also helps to give supporters a structure and remind them to be conscious about decision support.

The Broader Context of Supported Decision Making

The CRPD asserts the rights of people with disabilities to autonomy and self-determination. Too often these concepts and decision making are thought about in terms of the individual and individual ability. However in reality, for people with and without disabilities, decision making is a social process. The CRPD is driving development of supported decision making. It rests on the idea that being autonomous is not the same as being independent and recognises that no one is ever completely independent. Everyone is interdependent on others in their social context. Supported decision making puts into practice rather complex feminist ideas about relational autonomy (Mackenzie & Stoljar, 2000). Very simply, this means that a person’s autonomy stems from the relationships they have with others, be they close or distant, enabling or obstructive.

Much of this chapter has concentrated on the strategy of building the capacity of people who are close to people with disabilities and who are often called supporters (paid staff, friends or family members) to offer good decision support. This last section briefly considers other strategies to further supported decision making. First, building decision making skills of people with cognitive disabilities themselves; second, understanding cultural contexts of decision making and third, the role of the more distant others in a person’s life—those who work in mainstream services, public or commercial institutions and facilities.

Skills and Expectations About Decision Making

It is clear that good decision support practice also helps to improve the decision making skills of people with cognitive disabilities; as expectations of involvement in decision making rise and participation increases, people will have more opportunities to learn, develop and try out their skills in decision making.

Too often in the past, low expectations of families or educators meant children with intellectual disabilities had few opportunities to make decisions or learn the necessary skills. There are increasing calls to change this and encourage children with intellectual disabilities from an early age to be involved in decision making and explicitly teach these skills. Educators and researchers, particularly in the US, are now developing curricula and strategies for teaching self-determination (Shogren et al., 2015). Learning is a lifelong process, and it is also important to recognise the continuing capacity of many adults with intellectual disabilities to learn not only decision making skills, but also about their rights to make decisions, how to get the type of support they need and how to get the best from supporters. Some innovative supported decision making programmes in Australia are offering decision making training and using strategies such as communities of practice and peer mentoring not only to develop supporters’ skills but also those of people with intellectual disabilities (See, for example, Council for Intellectual Disability, My Rights Matter Program, n.d.).

The Importance of Culture

Culture plays an important role in the way individuals and communities approach decision making. For example, in Chinese culture, decision making is seen as the responsibility of the family rather than an individual. For Australian First Nations people, the community is at the heart of decision making which is seen as a collective responsibility. An experienced First Nations service manager explained how decision making occurs in her community, illustrating some of the tensions between western and indigenous cultures:

We do sit and decide who is going to make the decision and who needs to be involved in that decision-making process. And it doesn’t mean that we’re taking away the autonomy of the individual. The individual is still centred but the decision is collectively made about what’s best for that person. And literally it is our way of doing the circle of support whether you have a disability or not… We hear what they want to – we hear what they say. We know what they mean through either their behaviour, their words and then we’ll sit down and have a discussion about what’s the best way to support that individual to do what they need to be able to do. (Bigby et al., 2023, p. 418)

There is almost no research about supported decision making in non-Anglo communities or non-western societies. As knowledge develops further, disability support practice will need to adjust to take account of cultural differences in expectations about decision making and good support.

Mainstream Service and Public and Private Institutions

Supported decision making should not just be something that happens as part of the practice of those who work in disability support services. It must also be included as one of the strategies for making society more inclusive of people with disabilities. People with disabilities have contact with many other people beyond their family and disability services, such as lawyers, doctors, nurses, allied health professionals, hospitality workers, train conductors and people who work in banks, or libraries, and so on. Thinking beyond personal to civic decision making, through voting or membership of advisory or co-design groups, people with disabilities are likely to encounter other groups of workers with differing professional backgrounds. In their interactions with any of these workers, people with disabilities are likely to be in situations where they have to make decisions and need support to do so.

Universal design and reasonable adjustments are two key strategies to help ensure that supported decision making is part of wider mainstream systems. Universal design means attempting to make the world accessible and responsive to everyone without having to make changes for individuals. This may be a first step in supporting people with disabilities to make decisions in mainstream contexts. For example, institutions and organisations should

  • make information accessible in multiple formats including plain English and easy read—it will help to support decision making about things as diverse as the aims of political parties and health treatments,

  • offer variable length appointments to help ensure there is sufficient time for health professionals to explain options and support decision making, and

  • build regular breaks into meetings to enable people time to digest and think through their preferences about matters being discussed.

Making reasonable adjustments for individuals is also important. Mainstream workers and professionals can use knowledge from the disability sector to adjust their practice to support the decision making needs of a person with disability. For example:

  • awareness about supported decision making, and the need to adjust communication or secure skilled decision support for some people with disabilities, can be included as part of basic training for all public facing workers and professionals,

  • modules that teach supported decision making skills can be included as mandatory continuing professional development for professionals, and

  • knowledge and competencies about supported decision making can be built into accredited courses and professional standards for key professions (legal, financial, allied health and medical professionals).

Conclusion

Supported decision making is not a stand-alone programme but a set of principles and skills that need to be incorporated in disability and mainstream service systems and institutions. Its progress will be supported by legal and policy reform to set out the legal basis for supported decision making, mandate its use, regulate its practice and safeguard the rights to safety as well as autonomy of people with disabilities. Reforms will shape the context for disability practice, and as the disability sector forges ahead with supported decision making, its work will provide important exemplars of strategies that the mainstream can use to increase accessibility and to make the types of adjustments that will support people with disabilities to participate in decision making.

Take Home Messages

  • Making decisions about one’s own life is part of exercising choice and control and important to social and psychological wellbeing.

  • Rights to decision making are often removed from people with cognitive impairments by laws that determine a person must have the capacity to understand the implications of decisions in order to make them.

  • Supported decision making is a new way of thinking that asserts the right of all people with disabilities to make decisions and to have their will and preferences at the centre of all decisions. It acknowledges that taking risks is an important part of decision making which has positive as well as potentially negative effects.

  • Supported decision making emphasises the interdependence of all people and the right to support to make decisions. This may range from support to consider options and implications of a decision or support from close supporters to understand and interpret the preferences if a person is unable to express them directly.

  • Good support requires time and relies on trusting relationships with supporters.

  • The La Trobe Support for Decision Making Framework is evidence informed. When supporters are trained in the steps, principles and strategies of the Framework, they are more likely to provide rights based decision support that reflects the preferences of the person being supported.