In today’s post, we turn to a very recent report on an Australian supported decision-making trial program. The program aimed to assist people with cognitive disabilities with decision-making. Research on practical efforts to create a supported decision-making system are important and should complement principled policy-making, writes Piers Gooding.
Some law reformers have criticized the CRPD on the basis that there is no evidence-base for supported decision-making. This seems to me to be an odd response. Imagine if the abolition of restrictions on inter-racial marriage required an ‘evidence-base’, or if the early suffragettes were asked to ‘prove’ why women should have the right to vote (which, they probably were!).
From this angle, it seems odd that some public figures would demand that disabled people provide evidence to justify the call for equal recognition of their decision-making before the law. Equality is a profoundly moral requirement in and of itself and the law should reflect that.
At the same time, it is important that we to try to figure out what works in practice. And governments can be swayed by specific practices which have been tested and evaluated to demonstrate whether or not theory is being realised in practice. Hence why this blog drew attention in an earlier post to PO Skane, a mental health advocacy program which not only provides human rights-based framework for supporting people with mental health disability but is also reported to reduce the number of people ending up in acute crises (which reportedly saves 17 times the cost of the service itself).
Today we’re excited to look at a new supported decision-making practice in Australia. A number of supported decision-making trials have either occurred or are underway in Australia. The most recent of these was a supported decision-making trial undertaken by the New South Wales (NSW) Department of Family and Community Services.The department worked with various arms of government, including the Office of the Public Guardian and the NSW Trustee and Guardian, who are responsible for guardianship arrangements in NSW. Together, they conducted a small-scale trial project in 2013/2014, which will be detailed in a soon-to-be-published independent evaluation, My life, my decision An independent evaluation of the Supported Decision Making Pilot.
The Centre for Disability Law and Policy at the National University of Ireland were able to read a copy of this report. The first thing to notice is their neat definition of supported decision-making:
Supported decision making (SDM) is the process of assisting a person with disability to exercise their legal capacity to act on an equal basis with others. Support generally involves the assistance of trusted others and encompasses practical elements such as assistance with communication or providing information in accessible formats.
Astute readers will hear an echo of the ‘right to act’ in that description. The report goes on to describe how the trial sought to reveal:
- more about how supported decision making relationships work
- what tools and resources are useful
- what issues may need to be considered for the broader application of a supported decision making framework.
The trial also sought to raise awareness about the need to make available support to people with disabilities to make decisions on an equal basis with others.
The investigators set about creating booklets for possible participants, as well as other resources and toolkits for individuals, supporters and others. These resources were then put to the test by establishing support arrangements with 26 participants, who were described as the ‘decision-makers’. (For various reasons, six decision-makers withdrew by the trial’s end).
13 decision-makers lived in their family homes, one in public housing with drop-in support and the remaining 12 in some form of residential accommodation, mostly group homes. They were a diverse group, with diverse lives and support needs.
Over the course of the pilot, 19 people acted as supporters to 16 of the pilot decision makers. Of these 19 supporters, 10 were paid service providers, seven were family members, one was a friend, and one person was a paid advocate. The pilot facilitators acted as the supporters for another six individuals. Four individuals exited the pilot without a supporter ever being nominated. The full details of the trial will be published by the Department of Family and Community Services shortly. But I’ve contacted Department representatives and have permission to summarise the main findings below.
The main question the evaluator asked was whether the support established new ways for people with a disability to direct their lives, including their services and supports?
The evaluators reported that:
Over the life of the pilot there was an increase in the number of decisions made by decision makers for themselves. There was a wide variety of decisions worked on during the pilot, ranging from day to day decisions such as going on an outing or buying new shoes to major decisions such as moving house.
Nine decision makers said they were making decisions in new areas since joining the pilot (six in financial areas, one in living arrangements, one to go on a holiday, one with fitness and one with what they wore).
The most significant impact was in the area of financial decision making. Financial decision making was the most common area where people indicated they wanted to make more of their own decisions before the pilot. Two-thirds of decision makers said that they now made most or all of their financial decisions compared to one in five at the beginning of the pilot. However, amongst the nine NSWTG decision makers, only three (one-third) reported an increase in financial decision making. This could suggest that if supported decision making processes are more widely available to individuals, there may be a reduced demand for financial management. However, once having become subject to financial management, it is more difficult to return control to the individual.
Another interesting finding of the study centred on the use of written materials. The evaluators asked whether the written pilot tools/resources useful in assisting supported decision-making in participants and supporters? The results were unexpected.
It was anticipated that the written resources would reduce the need for face-to-face facilitation but this was not the result. The pilot demonstrated that the written tools and resources were insufficient to enable supported decision making. The pilot demonstrated that the facilitator role was crucial to the achievement of supported decision-making. Facilitators needed to spend significant time working on a 1:1 basis to support both decision makers and supporters to progress the decisions which had been identified for the pilot.
This is a particularly interesting finding. The term ‘supported decision-making’ is becoming something of a buzzword. As a result, a number of new initiatives are popping up by government bodies all over the world and often they set out to develop written materials. It is a cheap and fairly easy policy option. Yet the NSW study indicates the importance of face-to-face human interation, and particularly facilitation.
The NSW trial was focused largely on a 1 supporter 1 decision-maker type arrangement. But there have been other approaches, such as the use of ‘circles of friends’, which expand the number of supporters (say to 6 supporters for 1 decision-maker) and it is commonly said that the key to a good circle of support is a good facilitator. Some supporters will benefit from facilitation to avoid falling into the role of a ‘best interests’ substituted decision-maker and instead to seek to be neutral in their support.
The findings also support what seems to be a common complaint of people with disabilities and their families: people are sick of receiving advice. They want action. As the evaluation reported:
Despite the considerable work that went into the creation of the tools and resources, generally, decision makers and supporters reported that they provided limited assistance.
However, there was one very interesting exception. The evaluators reported that ‘the exception was the Easy Read booklet which appeared to serve as a focal point and added legitimacy to the supported decision making process for some decision makers.’ The Easy Read booklet was developed to described the project and was used by both decision-makers and supporters to keep them on track and to explain the process.
The other written resources were seemingly most useful for the facilitators, who used them as a guide for addressing issues that arose in the decision making process.
The final question of the evaluators was whether or not the training activities increase awareness and understanding of supported decision-making? Again, the one to one support was seen as the most valuable:
It was envisaged that the pilot would provide three types of training activities: face-to-face training with decision makers and supporters; formal group training with decision makers and supporters; and formal group training with service providers, particularly those in the Western Sydney District of ADHC.
The pilot training activity that was most successful was the face-to-face training provided by the project team to the decision makers and supporters. This facilitation was mostly in the form of 1:1 support with decision makers and supporters.
Finally, the evaluator’s examined what they termed to be the ‘barriers and enablers’ of supported decision-making. They concluded as follows:
In the main, the barriers to supported decision making were not intrinsic to the specific decision maker but to others around them, the general life circumstances of people with a disability such as social isolation (leading to difficulties with supporter recruitment), lack of power and familiarity with making decisions, low expectations by others, power imbalance and conflict of interest in relationships and the length of time that it takes for someone to be supported to become ‘decision-ready’.
Key enablers were the assistance provided by facilitators, 1:1 support and training of decision makers by a trusted individual, the availability of supporters, the time available in the pilot to work thoroughly through the decision making process, the education and training of people in the supporter role and the flexibility to use facilitators directly as supporters when needed.
These are important points to consider and they raise questions that go to the heart of Article 12 and the CRPD in general. What can we do to promote autonomy and self-direction for all citizens within a context of meaningful choices for living a good life? And in contrast, what factors undermine agency and lead to substituted decision-making, passivity and compliance?
The NSW pilot provides additional evidence to demonstrate what we already know: it is possible to enhance the legal capacity of a number of people with disability (and others) to be the agents of their own lives within a context of support and equality.
This document has been produced with the financial assistance of the European Union. The contents of this document are the sole responsibility of PERSON (Partnership to Ensure Reforms of Supports in Other Nations) and can under no circumstances be regarded as reflecting the position of the European Union.