South Australian Supported Decision Making project

Summary

The Supported Decision Making Project (2010-2012) aimed to assist people with a disability set up supported decision making agreements in areas of health, accommodation and lifestyle decisions. The approach aimed to maximise the autonomy and the exercise of rights by people with a disability, and is consistent with Article 12 CRPD.  The model provided a “non-statutory supported decision making agreement”. The independent evaluator concluded that the project provided specific benefits to most participants. This included increased confidence in decision making, improved decision making skills, and a feeling of greater control of a person’s life.

Issue addressed

This project is one of the most comprehensive pilot projects and trials aimed at developing a model on supported decision-making based on Article 12 of the CRPD.

Background information

The South Australian Project developed from earlier versions of a Model called Stepped. The Stepped Model of Supported and Substituted Decision-Making described different interventions based on the level of autonomy retained by the individual, and the level of intervention by the state. The aim of having such options is to avoid escalation into more intrusive interventions that may not be needed.

Description of practice

The South Australian trial involved setting up an agreement between a person with a disability and a family member or friend who would act as a decision supporter. It is a non-statutory model. This trial could not accept individuals where there was significant conflict with families and friends, to the extent that some members of a family may not recognise and accept the decisions made with support.

The trial was conducted with 26 people of different age categories. Both young adults with intellectual disabilities for which guardianship had not yet been considered, and adults for which it is an alternative to guardianship participated in the project. Supporters were evenly mixed between friends and a range of immediate family members. Only one participant in the trial had no supporter, and support was provided by the facilitator.
This trial considered healthcare, accommodation and lifestyle decisions. Decisions about relationships, work and holidays were the most common lifestyle decisions made.

Several decisions were made by participants in the Supported Decision Making Trial, according to the principles developed by the project. The independent evaluator reported that the project delivered specific benefits to most of the participants, both people with disabilities and supporters. Benefits included increased confidence in themselves and in their decision-making. There was a growth in support networks, a feeling of greater control in the persons’ lives, and increased community engagement (Wallace 2012).

Now that the pilot has finished, two steps are foreseen. First, a legislative reform that could underpin the wider use of supported decision-making arrangements in the community, as well as their application in situations where non-statutory arrangements are insufficient, such as when there is conflict present. A second key element would be the provision of a small supported decision-making facilitation service, similar to the service that was operated during the pilot project. Such a service would best sit in the non-government sector, but this would need to be  delivered by an organisation that does not already provide extensive disability services, to prevent conflicts of interest.

Analysis

This pilot project is very interesting because, as opposed to many other NGO-run pilot projects, it has been run by the Office of the South Australian Public Advocate, which is responsible for the rights and needs of ‘incapacitated’ persons and for guardianship. The Office of the Public Advocate supports the Public Advocate in performing his duties and, in particular, provides information , education to the public, individual and systemic advocacy, investigatory services and acts as guardian of last resort. It gives another dimension to the project, as it included the authorities in all steps of the project and ensures the sustainability of the results.

Secondly, the project had a solid theoretical base and came through prior experiences of finding intermediate steps between autonomous decision-making and substitute decision making.

Thirdly, the project worked with a mixed group of people, some who had good decision skills, and others who had no skills at all. For these, the project allowed them to take back the personal authority that rightfully belongs to them and train home decision making skills. Supported Decision Making has been for them a process, a form of education. For the others, the trial addressed an environmental gap in their networks — it made sure that supporters were prepared and able to spend time to talk about decisions and offer support, whereas before they were asked to take on this role, they may not have realised this was a need. Another strength, which may have a barrier as well because of informal substituted decision-making skills, is that the project worked on the basis of existing trust relationship where there was no conflict.
However, one of the difficult described in the evaluation of the project, is that the model hardly works for isolated people and therefore the supported decision making must be linked with other initiatives such as Circles of Support that seek to connect people with disability to their community.
We can also question the issue of the involvement of people with more severe disabilities, as the requirements for the participants were the following:
– Express a wish to receive support
– Form a trusting relationship with another person(s) (supporter or monitor)
– Indicate what decisions they may need support for
– Indicate who they wish to receive support from for which decision
– Express a wish to end support if that time comes
– Be aware that they are making the final decision and not their supporter (take responsibility)
As a conclusion, this is a very viable project which offers a lot of resources and material really worth reading.

Further reading

All the project documents, project evaluation and presentations are available here.

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