Do we need a law to help people try experimental drugs?

People with life-threatening or incurable diseases may be willing to try experimental drugs and unproven treatments, but they face the risk of exploitation. Is the law the best avenue to ensure that they are protected while medical innovation is encouraged? Protection of vulnerable people is a thread running through many laws, in Australia and elsewhere. In medical law, for instance, children and people with impaired decision-making capacity warrant special attention. But what of the ordinary person diagnosed with a life-threatening disease? Such people are vulnerable to harm and potential exploitation when they seek access to innovative, experimental or unproven treatments that depart from the existing range of accepted medicine.

'Genuine' refugees or illegitimate 'boat people' : political constructions of asylum seekers and refugees in the Malaysia Deal debate

Immigration to Australia has long been the focus of negative political interest. In recent times, the proposal of exclusionary policies such as the Malaysia Deal in 2011 has fuelled further debate. In these debates, Federal politicians often describe asylum seekers and refugees as ‘illegal’, ‘queue jumpers’, and ‘boat people’. This article examines the political construction of asylum seekers and refugees during debates surrounding the Malaysia Deal in the Federal Parliament of Australia. Hansard parliamentary debates were analysed to identify the underlying themes and constructions that permeate political discourse about asylum seekers and refugees. We argue that asylum seekers arriving in Australia by boat were constructed as threatening to Australia’s national identity and border security, and were labelled as ‘illegitimate’. A dichotomous characterisation of legitimacy pervades the discourse about asylum seekers, with this group constructed either as legitimate humanitarian refugees or as illegitimate ‘boat arrivals’. Parliamentarians apply the label of legitimacy based on implicit criteria concerning the mode of arrival of asylum seekers, their respect for the so-called ‘queue’, and their ability to pay to travel to Australia. These constructions result in the misrepresentation of asylum seekers as illegitimate, undermining their right to protection under Australia’s laws and international obligations.

Toward making inroads in reducing the disparity of lung health in Australian Indigenous and New Zealand Maori children

Globally, Indigenous populations, which include Aboriginal and Torres Strait islanders in Australia and Māori people in New Zealand (NZ), have poorer health than their non-Indigenous counterparts. Indigenous peoples worldwide face substantial challenges in poverty, education, employment, housing and disconnection from ancestral lands. While addressing social determinants of health is a priority, solving clinical issues is equally important. Indeed, ignoring the latter until social issues improve risks further disparity as this may take generations. A systematic overview of interventions addressing social determinants of health found a striking lack of reliable evaluations.Where evidence was available, health improvement associated with interventions was modest or uncertain. 10 Thus advances in healthcare remain essential and these require the best evidence available in 11 preventing and managing common illnesses, including respiratory illnesses.

Rove n Rave™ development : a partnership between the university and the disability service provider to build a social website for people with an intellectual disability

Rove n Rave ™ is a website designed and created for, and with, people with an intellectual disability. Its aim is to provide them with a user-friendly online platform where they can share opinions and experiences, and where they can find reviews which will help them to choose a place to visit themselves. During the development process, input on design requirements was gathered from a group of people with an intellectual disability and the disability service provider. This group then tested the product and provided further feedback on improving the website. It was found that the choice of wording, icons, pictures, colours and some functions significantly affected the users' ability to understand the content of the website. This demonstrated that a partnership between the developer and the user is essential when designing and delivering products or services for people with an intellectual disability.

Kids, counselors and troubles-telling : morality-in-action in talk on an Australian children’s helpline

This article begins with the premise that morality is an intrinsic, although often invisible, aspect of everyday social action. Drawn from a corpus of fifty audiorecorded telephone calls to Kids Helpline, an Australian helpline for children and young people, we examine one call to show how the young caller and counsellor co-construct ‘morality-in-action’. Ethnomethodological understandings and, in particular, Sacks’ (1992) description of ‘Class 2’ rules and infractions show how an adolescent caller and counsellor collaboratively assemble moral versions of the caller. In puzzling out possible motives, the caller and counsellor can be seen to be attending to the implications of different moral versions of the caller. This attribution of motives is moral work in action, with motives contingently assembled, displayed and evaluated, with such work understood as displays of moral reasoning. The counselling call makes visible the counsellor’s interactional work to support and empower the client. Analysis such as this offers counsellors ways of understanding and making visible their interactional and moral work within helpline call interactions.

Designing with people with disabilities : adapting best practices of DIY and organizational approaches

Individualization of design is often necessary particularly when designing with people with disabilities. Maker communities, with their flexible Do-It-Yourself (DIY) practices, offer potential to support individualized and cost-effective product design. However, efforts to adapt DIY practices in designing with people with disabilities tend to face difficulties with regard to continuous commitment, infrastructure provision and proper guidance. We carried out interviews with diverse stakeholders in the disability services sector and carried out observations of local makerspaces to understand their current practices and potential for future collaborations. We found that makerspace participants face difficulties in terms of infrastructure provision and proper guidance whereas Disability Service Organizations face difficulties in continuous expertise. We suggest that artful infrastructuring to blend the best of both approaches offers potential to create a sustainable community that can design individualized technologies to support people with disabilities.

How to tackle cybercrime before people even know they're a victim

An estimated A$75,000 is lost by Australians everyday to online fraud, according to the Australian Competition and Consumer Commission (ACCC). Given that this is based on reported crime, the real figure is likely to be much higher. It is well known that fraud, particularly online fraud, has a very low reporting rate. This also doesn’t even begin to encompass non-financial costs to victims. The real cost is likely to be much, much higher. There are many challenges to policing this type of crime, and victims who send money to overseas jurisdictions make it even harder, as does the likelihood of offenders creating false identities or simply stealing legitimate ones. But despite these challenges police have started to do something to prevent the impact and losses of online fraud. By accessing financial intelligence, police are able to identify individuals who are sending money to known high-risk countries for fraud. They then notify these people with their suspicions that they may be involved in fraud. In many cases the people don’t even know they may be victims or involved in online fraud.

Destined to design? How and why Australian women choose to study industrial design

Despite over three decades of legislation and initiatives designed to tackle the traditional gender divide in the science, technology and design fields, only a quarter of the registered architects in Australia are women. There are no statistics available for other design disciplines, with little known about why women choose design as a career path and who or what influences this decision. This qualitative research addresses this knowledge gap, through semi-structured in-depth interviews conducted with 19 Australian women who completed an industrial (product) design degree. Thematic analysis revealed three key themes: childhood aptitude and exposure; significant experiences and people; and design as a serendipitous choice. The findings emphasise the importance of early exposure to design as a potential career choice, highlighting the critical role played by parents, teachers, professionals and social networks.

Impact of technology uptake on an Australian electricity distribution network

This paper presents simulation results for future electricity grids using an agent-based model developed with MODAM (MODular Agent-based Model). MODAM is introduced and its use demonstrated through four simulations based on a scenario that expects a rise of on-site renewable generators and electric vehicles (EV) usage. The simulations were run over many years, for two areas in Townsville, Australia, capturing variability in space of the technology uptake, and for two charging methods for EV, capturing people's behaviours and their impact on the time of the peak load. Impact analyses of these technologies were performed over the areas, down to the distribution transformer level, where greater variability of their contribution to the assets peak load was observed. The MODAM models can be used for different purposes such as impact of renewables on grid sizing, or on greenhouse gas emissions. The insights gained from using MODAM for technology assessment are discussed.

Which values?: Matching Schwartz's ten values constructs with the Nine Values for Australian Schooling

This study set out to determine which values are represented in the National Framework for Values Education in Australian Schools by matching Schwartz's ten values constructs to the Nine Values for Australian Schooling and examining the values orientations of contemporary young people, specifically Grade 8 girls from one State High School in South East Queensland. This was achieved by using the Schwartz Portrait Values Questionnaire (PVQ) as well as thematic analysis. Key findings were that there was a match between the Grade 8 girls values and some of the Nine Values however not others. Also, that not all of Schwartz's values are represented in the Nine Values for Australian Schooling, and certain values could be said to be omitted from the Framework and certain privileged.

Avoiding giving advice in telephone counselling for children and young people

Kids Helpline is an Australian 24-hour telephone counselling helpline for children and young people up to the age of 25 years old. The service operates with the core values of empowerment for clients, and the use of child-centred practices, one aspect of which is a non-directive approach highlighted by the avoidance of overt advice giving. Through analysis of a single call to the helpline, this chapter demonstrates how counsellors actively manage and minimise the normative and asymmetric properties of advice in the course if helping clients develop options for change. In doing so we illustrate the practical relevance and enactment of abstract institutional policies and discuss the interactional affordances of institutional constraints on practice.

Unspeakably present: The (un)acknowledgment of diverse sexuality and gender human rights in Australian youth justice systems

A number of international human rights frameworks protect the rights of young people in contact with the criminal justice system in states parties, including Australia. These frameworks inform youth justice policy in Australia’s jurisdictions. While the frameworks protect young people’s right to non-discrimination on the grounds of ‘race’, religion and political opinion, the rights of young people to non-discrimination on the grounds of sexuality and gender diversity are not explicitly protected. This is problematic given that lesbian, gay, bisexual, trans, intersex and queer (LGBTIQ) young people appear over-represented in youth justice systems. This article argues that the exclusion of this group from human rights frameworks has an important flow-on effect: the marginalisation of the right of LGBTIQ young people to non-discrimination in policy and discourse that is informed by international human rights frameworks. After outlining the relevant frameworks, this article examines the evidence about LGBTIQ young people’s interactions with youth justice agencies, particularly police. The evidence indicates that the human rights of LGBTIQ young people are frequently breached in these interactions. We conclude by arguing that it is timely to consider how best to protect the human rights of LBGTIQ young people and keep their rights on the agenda.

Unlocking the learning potential of incarcerated Indigenous and low SES young people; Mathematics outcomes for future success: a discussion paper

This presentation provides a beginning discussion about what the literature reports about incarcerated young people. Incarcerated Indigenous and low SES young people typically have very low literacy and mathematics skills which precludes them from future education and or employment opportunities, thus continuing the cycle of disadvantage, exclusion and despair(Payne, 2007). Being locked out of learning, they are stuck in a cycle of underachievement, a scenario which contributes to unacceptably high levels of recidivism(ACER, 2014). Success at education is considered an important protective factor against delinquent behaviours such as offending, substance abuse and truancy. Youth education and training centres provide educational opportunities for the incarcerated Indigenous youth but achievement continues to be lower than expected, particularly in mathematics. This presentation provides an introductory literature review focusing on incarcerated young people and education. It is also the preliminary writing for a small pilot project currently being conducted in one Youth Education and Training Centre in Australia.

Multiple perspectives on quality of life for residents with dementia in long term care facilities: Protocol for a comprehensive Australian study

Background Dementia is a chronic illness without cure or effective treatment, which results in declining mental and physical function and assistance from others to manage activities of daily living. Many people with dementia live in long term care facilities, yet research into their quality of life (QoL) was rare until the last decade. Previous studies failed to incorporate important variables related to the facility and care provision or to look closely at the daily lives of residents. This paper presents a protocol for a comprehensive, multi-perspective assessment of QoL of residents with dementia living in long term care in Australia. A secondary aim is investigating the effectiveness of self-report instruments for measuring QoL. Methods The study utilizes a descriptive, mixed methods design to examine how facility, care staff, and resident factors impact QoL. Over 500 residents with dementia from a stratified, random sample of 53 facilities are being recruited. A sub-sample of 12 residents is also taking part in qualitative interviews and observations. Conclusions This national study will provide a broad understanding of factors underlying QoL for residents with dementia in long term care. The present study uses a similar methodology to the US-based Collaborative Studies of Long Term Care (CS-LTC) Dementia Care Study, applying it to the Australian setting.

Influencers on quality of life as reported by people living with dementia in long-term care: A descriptive exploratory approach

Background Over half of the residents in long-term care have a diagnosis of dementia. Maintaining quality of life is important, as there is no cure for dementia. Quality of life may be used as a benchmark for caregiving, and can help to enhance respect for the person with dementia and to improve care provision. The purpose of this study was to describe quality of life as reported by people living with dementia in long-term care in terms of the influencers of, as well as the strategies needed, to improve quality of life. Methods A descriptive exploratory approach. A subsample of twelve residents across two Australian states from a national quantitative study on quality of life was interviewed. Data were analysed thematically from a realist perspective. The approach to the thematic analysis was inductive and data-driven. Results Three themes emerged in relation to influencers and strategies related to quality of life: (a) maintaining independence; (b) having something to do, and; (c) the importance of social interaction. Conclusions The findings highlight the importance of understanding individual resident needs and consideration of the complexity of living in large group living situations, in particular in regard to resident decision-making.