Supported Decision Making Pilot - background and learnings
This report captures the lessons learnt by the Department of Family and Community Services (FACS) project team for the pilot on Supported Decision Making, which was designed to explore what supported decision making might look like in practice in the NSW context. The pilot aimed to develop, trial and evaluate a supported decision making framework, tools and training resources for people with disability, their families, carers, advocates and service providers. This occurred within the context of transitioning to the National Disability Insurance Scheme (NDIS), which will be fully operational in NSW by 2018 and will see people with disability take greater control of their lives by deciding on the services and supports they receive.
In a joint initiative, the NSW Trustee and Guardian, the Public Guardian and the NSW Department of Family and Community Services (FACS), Ageing Disability and Home Care (ADHC) conducted a small scale pilot project in 2013/14 to explore what supported decision making might look like in practice in the NSW context.
The pilot ran over 2013–14 and involved 26 people with disability in Sydney’s Cumberland Prospect area, chosen for the diverse nature of its population. Each person had a supporter to help them make a variety of decisions, ranging from small everyday decisions to major life decisions. Supporters were family members, friends, paid service providers or paid advocates.
Another important aspect of the pilot was the development of written resources for participants and their supporters, which could be used by people with disability (called decision makers) and their supporters to help them make decisions. The project team facilitators also played an instrumental role in the pilot and were key enablers of the supported decision making process. They introduced the concept to participants, assisted with the establishment of decision maker/ supporter relationships, provided role modelling, training and access to tools, and guided other individuals who had a role to play in implementing decisions.
The pilot aimed to learn:
- how supported decision making relationships work;
- which of the FACS tools were useful; and
- how best to build decision making skills on a broader scale.
What we learnt
- Decision readiness is important for both decision makers and their supporters.
- Resources and training can help.
- People with disability and their supporters need time to understand supported decision making and to put it into practice.
- Barriers to supported decision making were not intrinsic to the decision maker, but to others around them, such as the general life circumstances of people with disability including social isolation, lack of power and familiarity with making decisions.
- Trust between the person with disability and his or her supporter is critical to building decision making capacity.
- Written materials are useful in conjunction with one-on-one support while workshops can both inform and connect attendees.
- Volunteers, advocates and disability service workers can support decision making if the person with disability is socially isolated or if conflicts of interest emerge with family or friends acting as supporters.
This report discusses each of the lessons in more detail, flags areas for further exploration and summarises projects stemming from the pilot.
We found that many pilot participants required development of skills, knowledge and confidence to make decisions. Assistance with communication was a key enabler and highlighted the need for a proactive approach and effective aids to communication between people with disability and their supporters.
For example, we hired a speech pathologist and began to develop a picture-based decision making tool for one pilot participant with very limited verbal communication skills.
Supporters must also be decision ready. This means:
- understand supported decision making;
- knowing their role and what it does and does not include;
- understand the decision maker’s rights; and
- being aware of their own values so they do not project them onto the decision maker.
Through the pilot we found that, although many supporters self-assessed as decision ready, they actually had varying degrees of understanding and expertise. While all supporters were caring, they did not necessarily understand that, rather than making decisions in the best interest of the person with disability, they should support that person to make decisions. Wanting the best for a decision maker meant that some supporters tried to limit options to prevent bad decisions.
Family and friends who were supporters were highly aware of their duty of care while supporters from disability services were concerned about being labelled ‘negligent’ under current law if the person with disability took risky decisions. Both groups could benefit from education about dignity of risk or risk enablement. This is the right of people with disability to learn from their own choices, even if they experience disappointment or make mistakes.
In general, we felt that all supporters could benefit from additional information and coaching to understand their role. They would then be better equipped to experiment with new ways of assisting decision making.
Training must also take account of the power imbalance between decision makers and supporters and be sensitive to individuals’ and families’ needs and experiences.
Time to understand and practise supported decision making
Supporting decision making by a person with disability is more time consuming than making decisions for them.
People with disability may need more time and support to process information. In many cases those in the pilot took a long time to identify a decision they wanted to make or even to identify the need for a decision. It became apparent that many of the pilot participants had limited experience of, and exposure to, making decisions, including smaller day to day decisions such as what to eat for breakfast, because decisions have always been made for them.
For their part, supporters were often time poor. Parents in particular felt overwhelmed by their obligations to their children, and supporting decision making added more time pressures as well as creating another level of anxiety. The supporters employed in disability services were also time poor, but in a different way. Their agencies often did not structure in one-to-one support, with the result that finding the time to work with decision makers proved difficult.
For supported decision making to succeed, the supporter must spend time with the decision maker to identify and discuss decisions. It takes time to research a decision and ensure the decision maker is able to make an informed decision. One approach is to break the decision down into several components and work through the consequences and benefits of each component.
Implementing decisions can also be time consuming. For example, several participants in the pilot expressed the desire to cook at home, but their families felt this would create more work. As a consequence, the families were reluctant to make cooking an option for the person they were supporting.
The United Nations Convention on the Rights of Persons with Disability (UNCRPD) and the Disability Inclusion Act 2014 recognise that people with disability have the right to make their own decisions. For people to exercise this right, our experience from the pilot suggests that attitudes about people with disability will have to change significantly. This change will take time.
What we observed in the pilot was that some decision makers and supporters found it challenging to embrace the principles of supported decision making when these ran counter to long-held beliefs. Some supporters approached to join the pilot did not see the value of supported decision making, or did not think the person with disability was capable of making choices, even with support.
To change attitudes, we modelled empowering behaviour that valued the person with disability, talked to them about his or her rights and assisted with making smaller decisions to build confidence and self-belief. With some supporters we argued the case for supported decision making and prompted them to think about possible safeguards when decisions were potentially risky.
Building trusting relationships
The development of respectful, trusting relationships is crucial to the success of supported decision making and to enabling people with disability to live the life they want.
We saw two instances where disability support workers who were designated supporters left the pilot. The decision maker then had to build a new relationship, which was not only time consuming but adversely affected confidence in the whole process. This highlights the importance of supporters having adequate time to devote to their role and the ability and interest to continue for as long as the decision maker wants.
Training resources and support
Supported decision making requires a range of training and support for all those involved. This includes written resources, one-on-one facilitation, and group work.
Our experience in the pilot confirms that written materials such as the Supported Decision Making Pilot Handbook for supporters are useful, but have maximum impact when used one-on-one under the guidance of a facilitator. The involvement of a facilitator allowed explanation and message reinforcement through practice.
Similarly, the Easy English version of the pilot handbook for decision makers proved more useful with facilitator support.
Both, decision makers and supporters reported that formal one-on-one training by the pilot facilitator was the most effective form of information sharing.
The half-day workshop with guest speakers was also successful, allowing attendees to share experiences and build a sense of connectedness. It demonstrated the importance of people with disability sharing their lived experience of supported decision making and how this opened up new opportunities for the participants. This had an empowering effect on other participants, some of whom described it as a “light bulb moment”.
However, although group training engaged most participants, it is resource intensive. Not only does preparation take time, but people also need encouragement to attend.
The pilot first recruited decision makers and then asked them to identify potential supporters, the vast majority of whom turned out to be carers. Not all were able to accept the role. Some potential supporters declined on the grounds of carer fatigue while others expressed the view that the person with disability was incapable of making his or her own decisions.
We found through the pilot that some participants had limited natural networks and were not able to readily identify someone to act as their supporter. In these circumstances, participants nominated a support worker or a paid advocate who was known to them and with whom they had a positive relationship.
Another issue to consider is potential conflicts of interest which may emerge in the supporter role. Supporters need to be aware of power dynamics and imbalances in their relationships with decision makers, including for family members acting as supporters. Supporters may inadvertently (or intentionally) make decisions for the person rather than assist the person to make their own decisions. Power dynamics underlie all relationships and can lead to conflict of interest and place limitations on a decision makers’ ability to exercise their dignity of risk. The Pilot facilitators acknowledged the complexities for supporters on a day to day basis and that training needs to be sensitive to individuals and families’ needs and past experiences.
The challenges for support workers also included dealing with conflicts of interest between their roles as supporter and agency employee (dignity of risk vs duty of care). Paid or voluntary disability service workers can take on supporter roles, however, they must be working in an environment that encourages and allows time for supported decision making.
Supporting complex decision making
One important issue we identified during the pilot was that people faced with more complex decisions cannot always rely on their supporter having the right information and contacts. This was the case with a decision maker who was not fitting in well in his/her group home. The supporter did not understand group home placement and had to seek additional advice.
In such circumstances, supporters need to be aware of available services and supports and be able to link up with them where necessary.
Taking supported decision making forward
Despite the small numbers participating, the pilot has yielded valuable insights into how supported decision making works in practice and sign posted areas for further exploration.
Medical and health decisions
An area requiring further investigation is how best to support medical and health decisions, particularly as the pilot did not present opportunities for significant decisions in this area. Such decisions could, however, easily arise when decision makers have regular contact with medical and health professionals.
We noted that supporters in the pilot were uncomfortable with assisting decision making on health and medical issues, with one exception. In this case a supporter helped a decision maker to draw up a one-page communication sheet for medical appointments and hospitalisation. The aim was to both inform health professionals about the decision maker’s communication style and limit the latter’s anxiety and self-harming tendencies in health settings.
NSW law, under the Guardianship Act 1987, sets out how medical practitioners should obtain informed consent from people who have a disability and do not understand the treatment being offered. If a medical practitioner assesses the person as not having capacity to understand the treatment, then substitute consent should be sought from another person who knows the patient and has a genuine interest in their welfare. There is no provision in the Act that medical practitioners should give more support to a person with disability to support the person’s understanding of the treatment. This goes to the heart of the UNCRPD and supported decision making, and of the paradigm shift that is underway from substituted to supported decision making for people with disability.
Although the pilot primarily concerned making rather than implementing decisions, we became aware that implementation can present difficulties and act as a barrier to decision making. Just as making decisions requires time and resources so does implementation.
A number of further decisions may even be necessary to implement a single decision, requiring commitment, time and energy from supporters and a range of people to make it all happen.
Parents taking part in the pilot as supporters were aware that their children’s decisions could sometimes create tension in their relationship. One parent said that decision makers needed to learn that their decisions had consequences for others. We accepted this as fair feedback and something to be taken on board in facilitating supported decision making relationships.