Experiences of leaving prison for people with intellectual disability

Purpose – The support given to prisoners when they leave prison has a bearing on their success in starting a new life and on community safety. This paper aims to examine the community re-entry experiences of ten people with an intellectual disability in Queensland, Australia. Design/methodology/approach – The findings in this paper are part of a wider study on the life stories of ex-prisoners with an intellectual disability. Seven male and three female participants with intellectual disability were interviewed using a semi-structured life story method. Interviews were respectful of the communication styles of participants and involved multiple interview sessions, ranging from two to nine interviews per person. Data were analysed using narrative and thematic analysis with the assistance of NVivo 8 software. Findings – Participants found the process of leaving prison an emotional event, often clouded with both confusion about when release was to occur, and uncertainly as to what they could expect on the outside. The need for concrete information and coordinated hands-on assistance in negotiating supports in the community have significant implications for correctional and community services. Originality/value – This study captures the perspectives of people with intellectual disability on community re-entry. These perspectives are often overlooked in policy and practice developments in the field of corrections. Yet without understanding this group, the field is unable to address their particular needs.

Japonica rice: Intellectual property, scientific publishing and data-sharing

This article examines a series of controversies within the life sciences over data sharing. Part 1 focuses upon the agricultural biotechnology firm Syngenta publishing data on the rice genome in the journal Science, and considers proposals to reform scientific publishing and funding to encourage data sharing. Part 2 examines the relationship between intellectual property rights and scientific publishing, in particular copyright protection of databases, and evaluates the declaration of the Human Genome Organisation that genomic databases should be global public goods. Part 3 looks at varying opinions on the information function of patent law, and then considers the proposals of Patrinos and Drell to provide incentives for private corporations to release data into the public domain.

Improving adherence physical activity with a smartphone application based on adults with intellectual disabilities (APPCOID)

Background People with intellectual disabilities (ID) have lower levels of physical activity and quality of life and they have a lot of barriers to face when taking part in physical activity. Other problems are the poor adherence to physical activity such people have so this study is designed to improve adherence to physical activity for people with intellectual disabilities with the assistance of an application for smartphones. The aim of the study will be to improve physical activity and physical condition after multimodal intervention and to analyse the promotion of adherence to physical activity through a multimodal intervention and an app intervention (mHealth) in people with ID. Methods A two-stage study will be conducted. In stage 1 a multimodal intervention will take place will be done with physical activity and educational advice over eight weeks, two days a week. Data will be measured after and before the intervention. In stage 2 a randomized controlled trial will be conducted. In the intervention group we will install an application to a smartphone; this application will be a reminder to do a physical activity and they have to select whether they have or haven’t done a physical activity every day. This application will be installed for 18 weeks. Data will be measured after and before the application is installed in two groups. We will measure results 10 weeks later when the two groups don’t have the reminder. The principal outcome used to measure the adherence to physical activity will be the International Physical Activity Questionnaire; secondary outcomes will be a fun-fitness test and self-report survey about quality of life, self-efficacy and social support. Samples will be randomized by sealed envelope in two groups, with approximately 20 subjects in each group. It’s important to know that the therapist will be blinded and won’t know the subjects of each group. Discussion Offering people with ID a multimodal intervention and tool to increase the adherence to a physical activity may increase the levels of physical activity and quality of life. Such a scheme, if beneficial, could be implemented successfully within public health sense. Trial registration ClinicalTrials.gov Identifier: NCT01915381.

The Pirate Bazaar: The Social Life of Copyright Law

This thesis provides a cultural history of Australian copyright law and related artistic controversies. It examines a number of disputes over authorship, collaboration, and appropriation across a variety of cultural fields. It considers legal controversies over the plagiarism of texts, the defacing of paintings, the sampling of musical works, the ownership of plays, the co-operation between film-makers, the sharing of MP3 files on the Internet, and the appropriation of Indigenous culture. Such narratives and stories relate to a broad range of works and subject matter that are protected by copyright law. This study offers an archive of oral histories and narratives of artistic creators about copyright law. It is founded upon interviews with creative artists and activists who have been involved in copyright litigation and policy disputes. This dialogical research provides an insight into the material and social effects of copyright law. This thesis concludes that copyright law is not just a ‘creature of statute’, but it is also a social and imaginative construct. In the lived experience of the law, questions of aesthetics and ethics are extremely important. Industry agreements are quite influential. Contracts play an important part in the operation of copyright law. The media profile of personalities involved in litigation and policy debates is pertinent. This thesis claims that copyright law can be explained by a mix of social factors such as ethical standards, legal regulations, market forces, and computer code. It can also be understood in terms of the personal stories and narratives that people tell about litigation and copyright law reform. Table of Contents Prologue 1 Introduction A Creature of Statute: Copyright Law and Legal Formalism 6 Chapter One The Demidenko Affair: Copyright Law and Literary Works 33 Chapter Two Daubism: Copyright Law and Artistic Works 67 Chapter Three The ABCs of Anarchism: Copyright Law and Musical Works 105 Chapter Four Heretic: Copyright Law and Dramatic Works 146 Chapter Five Shine: Copyright Law and Film 186 Chapter Six Napster: Infinite Digital Jukebox or Pirate Bazaar? Copyright Law and Digital Works 232 Chapter Seven Bangarra Dance Theatre: Copyright Law and Indigenous Culture 275 Chapter Eight The Cathedral and the Bazaar: The Future of Copyright Law 319

Inventing life: Patent law and synthetic biology

With promises of improved medical treatments, greener energy and even artificial life, the field of synthetic biology has captured the public imagination and attracted significant government and commercial investment. This excitement reached a crescendo on 21 May 2010, when scientists at the J Craig Venter Institute in the United States announced that they had made a “self-replicating synthetic bacterial cell”. This was the first living cell to have an entirely human-made genome, which means that all of the cell’s characteristics were controlled by a DNA sequence designed by scientists. This achievement in biological engineering was made possible by combining molecular biotechnology, gene synthesis technology and information technology.

Survival, growth and quality of life in children after orthotopic liver transplantation: A 5 year experience

The aims of this study were to investigate outcome and to evaluate areas of potential ongoing concern after orthotopic liver transplantation (OLT) in children. Actuarial survival in relation to age and degree of undernutrition at the time of OLT was evaluated in 53 children (age 0.58-14.2 years) undergoing OLT for endstage liver disease. Follow-up studies of growth and quality of life were undertaken in those with a minimum follow-up period of 12 months (n = 26). The overall 3 year actuarial survival was 70%. Survival rates did not differ between age groups (actuarial 2 year survival for ages <1, 1-5 and >5 years were 70, 70 and 69% respectively) but did differ according to nutritional status at OLT (actuarial 2 year survival for children with Z scores for weight <-1 was 57%, >-1 was 95%; P = 0.004). Significant catch-up weight gain was observed by 18 months post-transplant, while height improved less rapidly. Quality of life (assessed by Vineland Adaptive Behaviour Scales incorporating socialization, daily living skills, communication and motor skills) was good (mean composite score 91 ± 19). All school-aged children except one were attending normal school. Two children had mild to moderate intellectual handicap related to post-operative intracerebral complications. Satisfactory long-term survival can be achieved after OLT in children regardless of age but the importance of pre-operative nutrition is emphasized. Survivors have an excellent chance of a good quality of life and of satisfactory catch-up weight gain and growth.

Loneliness in individuals with intellectual disability

Although some substantial issues exist regarding measurement of loneliness in individuals with intellectual disability, research has generally concluded that members of this group are more likely to (1) appear to others to be lonelier than their typically developing peers and (2) self-report greater loneliness than typically-developing individuals. As examples, in a study by Solish, Perry, and Minnes (2010), parents of children with intellectual disability reported fewer friendships and social activities for their children than parents of typically-developing children. Oates, Bebbington, Bourke, Girdler, and Leonard (2011) found that approximately one-third of the parents in their population study of children with Down syndrome reported that their child had no friends. When questioned directly about the experience of loneliness, only boys with mild intellectual disability reported more loneliness than their same age, typically-developing peers (Williams & Asher, 1992).

The Scored Patient-Generated Subjective Global Assessment (PG-SGA) and its Association with Quality of Life in Ambulatory Patients Receiving Radiotherapy

OBJECTIVE: To evaluate the scored Patient-generated Subjective Global Assessment (PG-SGA) tool as an outcome measure in clinical nutrition practice and determine its association with quality of life (QoL). DESIGN: A prospective 4 week study assessing the nutritional status and QoL of ambulatory patients receiving radiation therapy to the head, neck, rectal or abdominal area. SETTING: Australian radiation oncology facilities. SUBJECTS: Sixty cancer patients aged 24-85 y. INTERVENTION: Scored PG-SGA questionnaire, subjective global assessment (SGA), QoL (EORTC QLQ-C30 version 3). RESULTS: According to SGA, 65.0% (39) of subjects were well-nourished, 28.3% (17) moderately or suspected of being malnourished and 6.7% (4) severely malnourished. PG-SGA score and global QoL were correlated (r=-0.66, P<0.001) at baseline. There was a decrease in nutritional status according to PG-SGA score (P<0.001) and SGA (P<0.001); and a decrease in global QoL (P<0.001) after 4 weeks of radiotherapy. There was a linear trend for change in PG-SGA score (P<0.001) and change in global QoL (P=0.003) between those patients who improved (5%) maintained (56.7%) or deteriorated (33.3%) in nutritional status according to SGA. There was a correlation between change in PG-SGA score and change in QoL after 4 weeks of radiotherapy (r=-0.55, P<0.001). Regression analysis determined that 26% of the variation of change in QoL was explained by change in PG-SGA (P=0.001). CONCLUSION: The scored PG-SGA is a nutrition assessment tool that identifies malnutrition in ambulatory oncology patients receiving radiotherapy and can be used to predict the magnitude of change in QoL.