Academic literature on the topic 'Terminally ill children – Juvenile fiction'

Introduction I think the Privacy Act is a huge edifice to protect the minority of things that could go wrong. I’ve got a good example for you, I’m just trying to think … yeah the worst one I’ve ever seen was the Balga Youth Program where we took these students on a reward excursion all the way to Fremantle and suddenly this very alienated kid started to jump under a bus, a moving bus so the kid had to be restrained. The cops from Fremantle arrived because all the very good people in Fremantle were alarmed at these grown-ups manhandling a kid and what had happened is that DCD [Department of Community Development] had dropped him into the program but hadn’t told us that this kid had suicide tendencies. No, it’s just chronically bad. And there were caseworkers involved and … there is some information that we have to have that doesn’t get handed down. Rather than a blanket rule that everything’s confidential coming from them to us, and that was a real live situation, and you imagine how we’re trying to handle it, we had taxis going from Balga to Fremantle to get staff involved and we only had to know what to watch out for and we probably could have … well what you would have done is not gone on the excursion I suppose (School Principal, quoted in Balnaves and Luca 49). These comments are from a school principal in Perth, Western Australia in a school that is concerned with “at-risk” students, and in a context where the Commonwealth Privacy Act 1988 has imposed limitations on their work. Under this Act it is illegal to pass health, personal or sensitive information concerning an individual on to other people. In the story cited above the Department of Community Development personnel were apparently protecting the student’s “negative right”, that is, “freedom from” interference by others. On the other hand, the principal’s assertion that such information should be shared is potentially a “positive right” because it could cause something to be done in that person’s or society’s interests. Balnaves and Luca noted that positive and negative rights have complex philosophical underpinnings, and they inform much of how we operate in everyday life and of the dilemmas that arise (49). For example, a ban on euthanasia or the “assisted suicide” of a terminally ill person can be a “positive right” because it is considered to be in the best interests of society in general. However, physicians who tacitly approve a patient’s right to end their lives with a lethal dose by legally prescribed dose of medication could be perceived as protecting the patient’s “negative right” as a “freedom from” interference by others. While acknowledging the merits of collaboration between people who are working to improve the wellbeing of students “at-risk”, this paper examines some of the barriers to collaboration. Based on both primary and secondary sources, and particularly on oral testimonies, the paper highlights the tension between privacy as a negative right and collaborative helping as a positive right. It also points to other difficulties and dilemmas within and between the institutions engaged in this joint undertaking. The authors acknowledge Michel Foucault’s contention that discourse is power. The discourse on privacy and the sharing of information in modern societies suggests that privacy is a negative right that gives freedom from bureaucratic interference and protects the individual. However, arguably, collaboration between agencies that are working to support individuals “at-risk” requires a measured relaxation of the requirements of this negative right. Children and young people “at-risk” are a case in point. Towards Collaboration From a series of interviews conducted in 2004, the school authorities at Balga Senior High School and Midvale Primary School, people working for the Western Australian departments of Community Development, Justice, and Education and Training in Western Australia, and academics at the Edith Cowan and Curtin universities, who are working to improve the wellbeing of students “at-risk” as part of an Australian Research Council (ARC) project called Smart Communities, have identified students “at-risk” as individuals who have behavioural problems and little motivation, who are alienated and possibly violent or angry, who under-perform in the classroom and have begun to truant. They noted also that students “at-risk” often suffer from poor health, lack of food and medication, are victims of unwanted pregnancies, and are engaged in antisocial and illegal behaviour such as stealing cars and substance abuse. These students are also often subject to domestic violence (parents on drugs or alcohol), family separation, and homelessness. Some are depressed or suicidal. Sometimes cultural factors contribute to students being regarded as “at-risk”. For example, a social worker in the Smart Communities project stated: Cultural factors sometimes come into that as well … like with some Muslim families … they can flog their daughter or their son, usually the daughter … so cultural factors can create a risk. Research elsewhere has revealed that those children between the ages of 11-17 who have been subjected to bullying at school or physical or sexual abuse at home and who have threatened and/or harmed another person or suicidal are “high-risk” youths (Farmer 4). In an attempt to bring about a positive change in these alienated or “at-risk” adolescents, Balga Senior High School has developed several programs such as the Youth Parents Program, Swan Nyunger Sports Education program, Intensive English Centre, and lower secondary mainstream program. The Midvale Primary School has provided services such as counsellors, Aboriginal child protection workers, and Aboriginal police liaison officers for these “at-risk” students. On the other hand, the Department of Community Development (DCD) has provided services to parents and caregivers for children up to 18 years. Academics from Edith Cowan and Curtin universities are engaged in gathering the life stories of these “at-risk” students. One aspect of this research entails the students writing their life stories in a secured web portal that the universities have developed. The researchers believe that by engaging the students in these self-exploration activities, they (the students) would develop a more hopeful outlook on life. Though all agencies and educational institutions involved in this collaborative project are working for the well-being of the children “at-risk”, the Privacy Act forbids the authorities from sharing information about them. A school psychologist expressed concern over the Privacy Act: When the Juvenile Justice Department want to reintroduce a student into a school, we can’t find out anything about this student so we can’t do any preplanning. They want to give the student a fresh start, so there’s always that tension … eventually everyone overcomes [this] because you realise that the student has to come to the school and has to be engaged. Of course, the manner and consequences of a student’s engagement in school cannot be predicted. In the scenario described above students may have been given a fair chance to reform themselves, which is their positive right but if they turn out to be at “high risk” it would appear that the Juvenile Department protected the negative right of the students by supporting “freedom from” interference by others. Likewise, a school health nurse in the project considered confidentiality or the Privacy Act an important factor in the security of the student “at-risk”: I was trying to think about this kid who’s one of the children who has been sexually abused, who’s a client of DCD, and I guess if police got involved there and wanted to know details and DCD didn’t want to give that information out then I’d guess I’d say to the police “Well no, you’ll have to talk to the parents about getting further information.” I guess that way, recognising these students are minor and that they are very vulnerable, their information … where it’s going, where is it leading? Who wants to know? Where will it be stored? What will be the outcomes in the future for this kid? As a 14 year old, if they’re reckless and get into things, you know, do they get a black record against them by the time they’re 19? What will that information be used for if it’s disclosed? So I guess I become an advocate for the student in that way? Thus the nurse considers a sexually abused child should not be identified. It is a positive right in the interest of the person. Once again, though, if the student turns out to be at “high risk” or suicidal, then it would appear that the nurse was protecting the youth’s negative right—“freedom from” interference by others. Since collaboration is a positive right and aims at the students’ welfare, the workable solution to prevent the students from suicide would be to develop inter-agency trust and to share vital information about “high-risk” students. Dilemmas of Collaboration Some recent cases of the deaths of young non-Caucasian girls in Western countries, either because of the implications of the Privacy Act or due to a lack of efficient and effective communication and coordination amongst agencies, have raised debates on effective child protection. For example, the British Laming report (2003) found that Victoria Climbié, a young African girl, was sent by her parents to her aunt in Britain in order to obtain a good education and was murdered by her aunt and aunt’s boyfriend. However, the risk that she could be harmed was widely known. The girl’s problems were known to 6 local authorities, 3 housing authorities, 4 social services, 2 child protection teams, and the police, the local church, and the hospital, but not to the education authorities. According to the Laming Report, her death could have been prevented if there had been inter-agency sharing of information and appropriate evaluation (Balnaves and Luca 49). The agencies had supported the negative rights of the young girl’s “freedom from” interference by others, but at the cost of her life. Perhaps Victoria’s racial background may have contributed to the concealment of information and added to her disadvantaged position. Similarly, in Western Australia, the Gordon Inquiry into the death of Susan Taylor, a 15 year old girl Aboriginal girl at the Swan Nyungah Community, found that in her short life this girl had encountered sexual violation, violence, and the ravages of alcohol and substance abuse. The Gordon Inquiry reported: Although up to thirteen different agencies were involved in providing services to Susan Taylor and her family, the D[epartment] of C[ommunity] D[evelopment] stated they were unaware of “all the services being provided by each agency” and there was a lack of clarity as to a “lead coordinating agency” (Gordon et al. quoted in Scott 45). In this case too, multiple factors—domestic, racial, and the Privacy Act—may have led to Susan Taylor’s tragic end. In the United Kingdom, Harry Ferguson noted that when a child is reported to be “at-risk” from domestic incidents, they can suffer further harm because of their family’s concealment (204). Ferguson’s study showed that in 11 per cent of the 319 case sample, children were known to be re-harmed within a year of initial referral. Sometimes, the parents apply a veil of secrecy around themselves and their children by resisting or avoiding services. In such cases the collaborative efforts of the agencies and education may be thwarted. Lack of cultural education among teachers, youth workers, and agencies could also put the “at-risk” cultural minorities into a high risk category. For example, an “at-risk” Muslim student may not be willing to share personal experiences with the school or agencies because of religious sensitivities. This happened in the UK when Khadji Rouf was abused by her father, a Bangladeshi. Rouf’s mother, a white woman, and her female cousin from Bangladesh, both supported Rouf when she finally disclosed that she had been sexually abused for over eight years. After group therapy, Rouf stated that she was able to accept her identity and to call herself proudly “mixed race”, whereas she rejected the Asian part of herself because it represented her father. Other Asian girls and young women in this study reported that they could not disclose their abuse to white teachers or social workers because of the feeling that they would be “letting down their race or their Muslim culture” (Rouf 113). The marginalisation of many Muslim Australians both in the job market and in society is long standing. For example, in 1996 and again in 2001 the Muslim unemployment rate was three times higher than the national total (Australian Bureau of Statistics). But since the 9/11 tragedy and Bali bombings visible Muslims, such as women wearing hijabs (headscarves), have sometimes been verbally and physically abused and called ‘terrorists’ by some members of the wider community (Dreher 13). The Howard government’s new anti-terrorism legislation and the surveillance hotline ‘Be alert not alarmed’ has further marginalised some Muslims. Some politicians have also linked Muslim asylum seekers with terrorists (Kabir 303), which inevitably has led Muslim “at-risk” refugee students to withdraw from school support such as counselling. Under these circumstances, Muslim “at-risk” students and their parents may prefer to maintain a low profile rather than engage with agencies. In this case, arguably, federal government politics have exacerbated the barriers to collaboration. It appears that unfamiliarity with Muslim culture is not confined to mainstream Australians. For example, an Aboriginal liaison police officer engaged in the Smart Communities project in Western Australia had this to say about Muslim youths “at-risk”: Different laws and stuff from different countries and they’re coming in and sort of thinking that they can bring their own laws and religions and stuff … and when I say religions there’s laws within their religions as well that they don’t seem to understand that with Australia and our laws. Such generalised misperceptions of Muslim youths “at-risk” would further alienate them, thus causing a major hindrance to collaboration. The “at-risk” factors associated with Aboriginal youths have historical connections. Research findings have revealed that indigenous youths aged between 10-16 years constitute a vast majority in all Australian States’ juvenile detention centres. This over-representation is widely recognised as associated with the nature of European colonisation, and is inter-related with poverty, marginalisation and racial discrimination (Watson et al. 404). Like the Muslims, their unemployment rate was three times higher than the national total in 2001 (ABS). However, in 1998 it was estimated that suicide rates among Indigenous peoples were at least 40 per cent higher than national average (National Advisory Council for Youth Suicide Prevention, quoted in Elliot-Farrelly 2). Although the wider community’s unemployment rate is much lower than the Aboriginals and the Muslims, the “at-risk” factors of mainstream Australian youths are often associated with dysfunctional families, high conflict, low-cohesive families, high levels of harsh parental discipline, high levels of victimisation by peers, and high behavioural inhibition (Watson et al. 404). The Macquarie Fields riots in 2005 revealed the existence of “White” underclass and “at-risk” people in Sydney. Macquarie Fields’ unemployment rate was more than twice the national average. Children growing up in this suburb are at greater risk of being involved in crime (The Age). Thus small pockets of mainstream underclass youngsters also require collaborative attention. In Western Australia people working on the Smart Communities project identified that lack of resources can be a hindrance to collaboration for all sectors. As one social worker commented: “government agencies are hierarchical systems and lack resources”. They went on to say that in their department they can not give “at-risk” youngsters financial assistance in times of crisis: We had a petty cash box which has got about 40 bucks in it and sometimes in an emergency we might give a customer a couple of dollars but that’s all we can do, we can’t give them any larger amount. We have bus/metro rail passes, that’s the only thing that we’ve actually got. A youth worker in Smart Communities commented that a lot of uncertainty is involved with young people “at-risk”. They said that there are only a few paid workers in their field who are supported and assisted by “a pool of volunteers”. Because the latter give their time voluntarily they are under no obligation to be constant in their attendance, so the number of available helpers can easily fluctuate. Another youth worker identified a particularly important barrier to collaboration: because of workers’ relatively low remuneration and high levels of work stress, the turnover rates are high. The consequence of this is as follows: The other barrier from my point is that you’re talking to somebody about a student “at-risk”, and within 14 months or 18 months a new person comes in [to that position] then you’ve got to start again. This way you miss a lot of information [which could be beneficial for the youth]. Conclusion The Privacy Act creates a dilemma in that it can be either beneficial or counter-productive for a student’s security. To be blunt, a youth who has suicided might have had their privacy protected, but not their life. Lack of funding can also be a constraint on collaboration by undermining stability and autonomy in the workforce, and blocking inter-agency initiatives. Lack of awareness about cultural differences can also affect unity of action. The deepening inequality between the “haves” and “have-nots” in the Australian society, and the Howard government’s harshness on national security issues, can also pose barriers to collaboration on youth issues. Despite these exigencies and dilemmas, it would seem that collaboration is “the only game” when it comes to helping students “at-risk”. To enhance this collaboration, there needs to be a sensible modification of legal restrictions to information sharing, an increase in government funding and support for inter-agency cooperation and informal information sharing, and an increased awareness about the cultural needs of minority groups and knowledge of the mainstream underclass. Acknowledgments The research is part of a major Australian Research Council (ARC) funded project, Smart Communities. The authors very gratefully acknowledge the contribution of the interviewees, and thank *Donald E. Scott for conducting the interviews. References Australian Bureau of Statistics. 1996 and 2001. Balnaves, Mark, and Joe Luca. “The Impact of Digital Persona on the Future of Learning: A Case Study on Digital Repositories and the Sharing of Information about Children At-Risk in Western Australia”, paper presented at Ascilite, Brisbane (2005): 49-56. 10 April 2006. http://www.ascilite.org.au/conferences/brisbane05/blogs/proceedings/ 06_Balnaves.pdf>. Dreher, Tanya. ‘Targeted’: Experiences of Racism in NSW after September 11, 2001. Sydney: University of Technology, 2005. Elliot-Farrelly, Terri. “Australian Aboriginal Suicide: The Need for an Aboriginal Suicidology”? Australian e-Journal for the Advancement of Mental Health, 3.3 (2004): 1-8. 15 April 2006 http://www.auseinet.com/journal/vol3iss3/elliottfarrelly.pdf>. Farmer, James. A. High-Risk Teenagers: Real Cases and Interception Strategies with Resistant Adolescents. Springfield, Ill.: C.C. Thomas, 1990. Ferguson, Harry. Protecting Children in Time: Child Abuse, Child Protection and the Consequences of Modernity. London: Palgrave Macmillan, 2004. Foucault, Michel. Power/Knowledge: Selected Interviews and Other Writings, 1972-1977. Ed. Colin Gordon, trans. Colin Gordon et al. New York: Pantheon, 1980. Kabir, Nahid. Muslims in Australia: Immigration, Race Relations and Cultural History. London: Kegan Paul, 2005. Rouf, Khadji. “Myself in Echoes. My Voice in Song.” Ed. A. Bannister, et al. Listening to Children. London: Longman, 1990. Scott E. Donald. “Exploring Communication Patterns within and across a School and Associated Agencies to Increase the Effectiveness of Service to At-Risk Individuals.” MS Thesis, Curtin University of Technology, August 2005. The Age. “Investing in People Means Investing in the Future.” The Age 5 March, 2005. 15 April 2006 http://www.theage.com.au>. Watson, Malcolm, et al. “Pathways to Aggression in Children and Adolescents.” Harvard Educational Review, 74.4 (Winter 2004): 404-428. Citation reference for this article MLA Style Kabir, Nahid, and Mark Balnaves. "Students “at Risk”: Dilemmas of Collaboration." M/C Journal 9.2 (2006). echo date('d M. Y'); ?> <http://journal.media-culture.org.au/0605/04-kabirbalnaves.php>. APA Style Kabir, N., and M. Balnaves. (May 2006) "Students “at Risk”: Dilemmas of Collaboration," M/C Journal, 9(2). Retrieved echo date('d M. Y'); ?> from <http://journal.media-culture.org.au/0605/04-kabirbalnaves.php>.