Sabina Wynn (SW): Hello I’m Sabina Wynn, the Executive Director of the Australian Law Reform Commission and I’m here with the Commission’s President, Professor Rosalind Croucher, and Part-time Commissioner Graeme Innes, and we’re going to be talking about the ALRC’s latest report Equality, Capacity and Disability in Commonwealth Laws.
So Ros, what was the ALRC asked to do in this inquiry?
Rosalind Croucher (RC): Sabina, it was a very challenging inquiry and our brief was specifically to look at laws and legal frameworks within the Commonwealth jurisdiction that deny or diminish the equal recognition of people with disability as persons before the law and their ability to exercise legal capacity. We were asked to find what changes we could make at the Commonwealth level, how we could maximise individual autonomy and independence in Commonwealth laws. This comes directly out of the UN Convention on the Rights of Persons with Disability or, as Graeme calls it, the ‘DISCO’, and it also emerged in the wake of the launch of the pilot of the National Disability Insurance Scheme in 2013.
SW: So what are the key recommendations the ALRC is making?
RC: The set of recommendations seek to embody a supported decision-making paradigm in Commonwealth laws. How we did that was to propose four very high-level national decision-making principles with a set of three guidelines and they capture the essential ideas and commitments of the UN Convention. We see that they will provide the template for reforms in specific areas of Commonwealth jurisdiction but might also act as a catalyst for reform at the state and territory level.
SW: You mentioned the national decision-making principles, so what exactly are they?
RC: Sabina, they are four principles that are, first of all, the equal right to make decisions, and this places front and centre the idea that all adults have an equal right to make decisions that affect their lives and to have those decisions respected.
The second of the principles is the central one in the UN Convention which is support—that persons 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.
The third principle, and this is really the essential paradigm shift, is one that we’ve labelled ‘will, preferences and rights’ and this principle expresses that the will, preferences and rights of persons who may require decision-making support must direct decisions that affect their lives.
The fourth principle is a safeguards principle, also central to the UN Convention, that laws and legal frameworks must contain appropriate and effective safeguards in relation to interventions for persons who may require support, including to prevent abuse and undue influence.
SW: Graeme, could you give us an example of how these principles might work in practice?
Graeme Innes (GI): Sure Sabina, in fact I’d like to give you a couple of examples. The first one is about a young man named Joel and he’s a 20-year-old with intellectual disability who wants to move out of the family home, as do many others of that age. His parents have supported him all his life and they would continue to do that but the decisions that he makes about where he lives, in the new model, would be his own decisions supported by his parents and others from whom he might choose to get support rather than, in the current model, decisions which might be made for him or on his behalf.
The second example is an older woman, Sheila, who has Alzheimer’s. She has for the last five years given each of her nieces and nephews, five nieces and nephews, $1,000 on their birthday. Now, her representative—because sadly her Alzheimer’s has progressed to the extent where she is no longer able to make decisions even though they’re supported decisions, and so a representative has had to be appointed and that is her son—may under the current model have stopped this giving and keep that money for her support and accommodation based on her best interests because that’s the current test that applies. But now her will and preferences under the new model, if it’s adopted by Government, would be taken into account and the giving may continue to the nieces and nephews.
SW: Ros, what other key areas has the ALRC made recommendations in?
RC: Sabina, we’ve made specific recommendations in areas of Commonwealth jurisdiction, so what we’ve targeted here are things like the National Disability Insurance Scheme, as well as areas such as social security, the aged care arena and also e-health records and privacy. In each of those areas we’ve sought to apply a model of decision-making that uses the principles as the backdrop and also uses new language to refer to the roles of supporters and also the role of a representative who may be a person who is appointed, as last resort, to provide the support that the person might need in decision-making.
GI: But this model, of course, could be used as a model for state and territory laws and I’m hopeful that state governments will turn to this model when they review their guardianship and related processes and I’m hopeful that we’ve provided a model for disability organisations to advocate for, which is in compliance with the Disability Conventio, or the DISCO, principles.
SW: Ros, you’ve called this new approach a paradigm shift in the way that people with disability are able to make decisions, can you just explain what you actually mean by a paradigm shift?
RC: Yes, it’s absolutely key to any reform in the area of decision-making and recognition of people with disabilities as having equal rights in the area of decision-making that the model shifts. Rather than focusing on what is perceived as being in the objective best interests of a person, as Graeme mentioned is the current standard in many areas, rather than using a best interests model, the lens has to move very strongly and centrally on the person themselves so they are supported to the greatest extent possible in making decisions for themselves. The paradigm shift is both from best interests to will and preferences, but it also is a shift in language.
We thought throughout that language is a problem, it’s a recurring theme in discussions about people with disability so we’ve sought to come up with what we’ve described as a new lexicon where we’ve created distance from the paternalistic language—which was conceived as being in the interests of people but has now become outdated, so language like ‘unsound mind’ which still appears in some provisions like the Commonwealth Electoral Act and also away from the language of guardianship which, as Graeme reflected, is anchored in state and territory law—and come up with language of supporter and representative.
So that the paradigm shift is both in terms of the standard by which decision-making takes place—that is through the will and preferences of the person—and also in the language that we’ve developed to reflect that new model.
GI: This really plays out in practical terms by following through the change which is given momentum by things like the Disability Discrimination Act, the DISCO (the Disability Convention) and the National Disability Insurance Scheme. Language is one of the things that really limits people with disabilities from being equally included in society and so we’ve tried to address some of that language, as Ros said, but for people with disabilities what we want is a chance to just be agents of our own destiny and to live our own lives in the community and as participating members of the community.
You can’t do that if you have a model which allows for decisions to be made about us and in our best interests. We need to move to a model which allows us to maximise the opportunities to make decisions, to provide support for those decisions as we’re making them, where that’s needed, and to provide appropriate safeguards. That’s what we’ve tried to do with this model.
SW: So during the course of this inquiry the ALRC produced two consultation papers, we conducted around 100 consultations all over the country including in several regional areas and we received over 150 submissions, so there was widespread consultation with a lot of diverse people and we also had an Advisory Committee.
GI: I think it’s important, Sabina, to thank those stakeholders who participated, the members of the Advisory Committee who were across the range of people from government and bodies administering the sorts of decision-making processes that we currently have, people from academic areas and people from the disability sector. That actually reflects the broader consultations because we moved around a lot, as you say, in Australia and visited a whole range of people with disabilities as well as visiting other organisations who operate in this area and it’s important to recognise their contribution and the value that they’ve brought to the report in terms of giving us some real life experiences to support the legal concepts which we are proposing to change.
SW: So Ros, what happens now?
RC: Thank you Sabina, what happens now, and this is the case with all ALRC reports, once we’ve finished our work we deliver our report to the Attorney-General and under our Act the Attorney must table our reports in Parliament within 15 sitting days, so that will happen within up to 2-3 months, usually after a report but now I’m delighted that the ALRC report has been tabled and we look forward to implementation. Even if the specific recommendations take a while to implement, through the fantastic involvement of so many stakeholders, I think we’ve started a very significant conversation around real possibility for reform across the disability sector and, like Graeme, I thank everybody for their willing and enthusiastic involvement in another very challenging and rewarding inquiry.
SW: I just wanted to finish this conversation by reminding people that we have also produced the final report as an Easy English version which is available on the website. Thank you.
GI: Thanks Sabina.
RC: Thank you.