ࡱ> %` ~Objbj"x"x 4f@@RG+d%d%d%8%,%,&((&>&>&>&'''$h(40''004>&>&I5550>&>&5055Rz>&% Md%M1|Z~Lނ_0~=1==D'* 53,-'''444j'''0000d%d% AHRC CONSULTATION REGARDING DISCRIMINATION ON THE BASIS OF SEXUAL ORIENTATION AND SEX AND/OR GENDER IDENTITY Submission from Dr Tania Lienert, University Centre for Rural Health, North Coast, and Professor Colleen Cartwright, ASLaRC Aged Services Unit, Southern Cross University, November 2010 on end-of-life care for gay, lesbian, bisexual and transgender (GLBT) people: A human rights issue This submission is based on research we conducted during 2009 that found that discrimination against gay, lesbian, bisexual and transgender (GLBT) people in end-of-life care was a human rights issue. Our recommendations included strong Federal anti-discrimination laws to protect GLBT people, and community education to raise awareness about issues facing GLBT people. The research, involving a literature review and consultations with 25 GLBT individuals and their service providers in the Northern Rivers and metropolitan Sydney areas of NSW, was conducted from Southern Cross University. While this study did not include intersex people, we support the inclusion of intersex people in Federal anti-discrimination laws. For the full findings see the report: Lienert, T, Cartwright, C and Beck, K, The Experiences of Gay, Lesbian, Bisexual and Transgender People around End-of-Life Care, SHYPERLINK "ASLaRC article/coping Study Report, Aged Services Learning and Research Centre (ASLaRC). January 2010"coping Study Report, Aged Services Learning and Research Centre (ASLaRC). January 2010 at  HYPERLINK "http://aslarc.scu.edu.au/downloads.html" http://aslarc.scu.edu.au/downloads.html Benefits What benefit would there be in Federal anti-discrimination laws prohibiting discrimination on the basis of sexual orientation and sex and/or gender identity? What benefit would there be in federal law prohibiting vilification and harassment on the basis of sexual orientation and sex and/or gender identity? Anti-discrimination laws let the community know that GLBT people have rights. It is not the only step in ending discrimination against GLBT people, but it is an important part of the process. Our research found GLBT people fail to access health services due to past experience of discrimination or fear of discrimination, leading to poorer health outcomes. Awareness of the rights of GLBT people to equal treatment by health care providers could lead to changed practices, better service delivery, and consequently improved health and wellbeing of GLBT people. Poor treatment, found in our study in hospitals and aged care facilities, will be unacceptable and able to be challenged. If laws prohibiting vilification and harassment exist, they give victims a channel for complaints. Current Situation Can you provide examples of where federal protections from discrimination on the basis of sexual orientation or sex and/or gender identity are needed because state and territory laws do not provide adequate protections? In 2009 we conducted a scoping study into the end of life care experiences of GLBT people. The purpose of the research was to discover the experiences of GLBT people in preparation for a larger study. Our research, including an international literature review, found that GLBT people needing hospitalisation or aged care facilities experienced discrimination. In Australia, recent legal changes give same-sex couples some rights, but gay and lesbian people are still unable to marry or adopt children in all states (Gay and Lesbian Rights Lobby 2010). Religious organisations which provide most aged care services are exempt from State anti-discrimination laws (ACON 2006). While same-sex couples may have rights in some areas, there are no Federal anti-discrimination laws for GLBT people so federally-funded organisations can also discriminate. According to ACON (formerly known as the AIDS Council of NSW and now with a broader GLBT health promotion role), this means ageing GLBT people will experience different levels of service and access depending on the funding source of particular agencies (ACON 2006). Older GLBT people live in hiding in nursing homes, keep their sexual identity and relationships a secret when home carers visit, and threaten suicide rather than having to rely on homophobic staff in institutions (Harrison 2004; Harrison 2010). This kind of discrimination is likely to continue with the Federal Government taking over the management of aged care services across Australia as part of its health reform process. With no Australian Bill of Rights and no Federal anti-discrimination laws, this matter has the potential to undermine the equitable provision of health services to hundreds of thousands of GLBT taxpayers (ACON 2010). As a result of socially and legally sanctioned discrimination and stigma, GLBT people experience worse health than the general population on a range of indicators (Ministerial Advisory Committee on Gay and Lesbian Health 2003; Chandler, Panich et al. 2005; ACON 2006; Marmot and Wilkinson 2006; ACON 2009). GLBT people are less likely than other people to seek routine health care because of their discomfort in coming out to providers and disclosing their sexual orientation or gender identity (Auger 2003; Ministerial Advisory Committee on Gay and Lesbian Health 2003; Birch 2004; Chandler, Panich et al. 2005; Feldman and Parkinson 2005; ACON 2006; Pitts, Smith et al. 2006; Smolinski and Colon 2006). They are also not confident about accessing aged care services for their future health care needs (Weeks, Heaphy et al. 2001; Callan and Mitchell 2007; Rolle 2009). Verifying this finding, significantly higher levels of well-being among GLBT people are associated with greater perceptions of acceptance from the wider community (Dane, Masser et al. 2010). Patterns of modifying behaviour due to fear of discrimination or prejudice would seem to be well grounded given evidence of homophobic, discriminatory and abusive practices experienced by GLBT people in many health and aged care settings, in particular in hospitals (Chandler, Panich et al. 2005; Blevins and Werth 2006; Harrison 2006; Pitts, Smith et al. 2006). Transgender people are at particularly high risk of reduced quality of health care and health service access, especially where personal care is provided (Feldman and Parkinson 2005). Such problems can lead to isolation, late presentation, the need for crisis management and premature hospitalisation or institutionalisation (ACON 2006). These issues have consequences for GLBT peoples ability to seek appropriate end-of-life care, and are predictors for problems in end-of-life care, including elder abuse and neglect (Auger 2003; ACON 2006; Pitts, Smith et al. 2006). Further, at the end of life, family members of gay and lesbian people can take over decision-making and make decisions not in line with the patients wishes (Auger 2003; Chandler, Panich et al. 2005). Family members can exclude a same-sex partner from decision-making, deny contact and seize assets (Cahill, South et al. 2000; Casey 2003; Hash 2006). Health care professionals can be similarly hostile, insensitive and unsupportive of same-sex partners (Cahill, South et al. 2000; Casey 2003; Hash 2006). A major theme that emerged from the analysis of our data was the lack of legitimacy of same-sex relationships and sexual and gender identity accorded by family, health care professionals, and society. For gay and lesbian participants, many family and health care professionals failed to acknowledge the appropriate decision-maker at the end of life. This caused additional grief, loss of dignity and loss of property upon the death of same sex partners. This was particularly salient when health professionals accorded next-of-kin status to blood family but not to same-sex partners. One participant who had cared for more than 1000 gay men in the early days of the HIV epidemic talked about families and service providers denying same-sex relationships: One guy who was diagnosed went downhill very quickly. His parents came the day before he died. They wanted to take his body back to the country town where they were from. They didnt want his partner or friends involved. We had a deviants funeral separate to the family funeral that was the compromise. The kid thought mum and dad would be okay but they werent. Absolutely everything was taken from the partner. One participant reported seeing a transgender person transferred from the female to the male wards in the hospital where she was being cared for. This was a man who had lived as a woman since early adulthood and had been kicked out of various jobs and had a very difficult time and was kicked out of the female wards and put into the male wards A related theme that emerged among participants was the desire for privacy on the part of gay and lesbian people. Staff at two services observed that clients who could access services locally, chose not to. The staff speculated that living in a small town and knowing the service providers may prevent access to services. However, at the end of their lives, when GLBT people can be more vulnerable and dependent on others, this may mean they miss out on essential services. It was noted that some gay and lesbian people choose to live on the margins of society, for example in self-sufficient rural communities, to avoid the confrontation of discrimination in the mainstream heterosexual and heterosexist world. This decision may prevent access to essential services. Participants speculated that if gay and lesbian people had lived all their lives on the margins and been self-sufficient in their own communities, they may not want or feel they need services, even GLBT or GLBT-friendly services. Part of this may be a rebellion against the mainstream. For transgender people, the lack of recognition of their chosen gender identity, or the humiliation of having to explain that they are transgender to get appropriate aged care services, were salient issues. One service provider told of a transgender woman who had lived all her life as a woman, but had never had sex reassignment surgery. She now had dementia and lived in a religious aged care facility. Staff there forced her to live as a man. Other transgender people who have not had sex reassignment surgery, or who are left with incontinence after the surgery, have to explain their situation to care providers in order to get appropriate products. Acknowledging the conservatism of staff in the aged care sector, one service provider asserted: I will do everything I can to get supportive services for GLBT people in their own homes, rather than see them enter a nursing home. Another reflected on the very high levels of education, advocacy and training and personal support needed to ensure transgender clients received appropriate services from trans-friendly agencies. In our research, we found the absence of Federal anti-discrimination laws helps to facilitate discrimination. So too does the exemption from state anti-discrimination laws for religious organisations providing aged care. The findings suggest that in order for GLBT people to receive dignified end-of-life care, discrimination against GLBT people needs to end, both in Australian law and in community attitudes. Legal and social recognition of same-sex relationships, and the diversity of sexual and gender identity, is important. The 鱨վ could assist by introducing anti-discrimination laws for GLBT people at the Federal level. Exemptions for religious service providers the majority of aged care service providers in Australia need to be reconsidered, in particular those organisations using taxpayers funds to provide services in the community. Terminology/coverage What terminology should be used in Federal anti-discrimination legislation if protection from discrimination on the basis of sexual orientation is to be included? Sexual orientation should include attraction those of the same sex, identity as a gay, lesbian or bisexual person, and sexual behaviour with persons of the same sex. Due to stigma and discrimination many gay, lesbian and bisexual people do not identify as such. But they still experience discrimination because of their attraction to others, their sexual behaviour and their intimate relationships. Exemptions What special measures designed to benefit specific groups based on sexual orientation and sex and/or gender identity should be allowed by federal anti-discrimination law It will help to target GLBTI people in some cases, such as health policy. This means due to their special needs some services should be GLBTI-specific or specialist or, only available for gay, lesbian, bisexual or transgender or intersex people. This will help increase the feeling of safety, and assist in empowering marginalised groups. In our study, we found this to be the case for older GLBTI people, who may not have come out publicly to family and friends. We argued in favour of GLBTI specific aged care services and facilities (in addition to educating training mainstream health care providers see below). Other Actions What other actions would you like to see the Australian Government take to better protect and promote the rights of LGBTI people in Australia? Discomfort and poor treatment from service providers who work with GLBT people may be addressed by education programs that raise awareness about issues facing this client group and the benefits of diversity among staff and clients. Such programs can facilitate policies and practices that help provide a safe and positive environment, and include complaints procedures for when compliance fails. Aged care training organisations and services need to take responsibility for non-discriminatory and inclusive practices. Services need to promote collect data so they know which of their clients identify as GLBT and can then plan strategies to assist them. It is important that to provide leadership on this issue to the community and to health care providers, that the Government funds a national strategy to improve GLBT health, GLBT community groups and services, and a peak body to work with GLBT community groups, mainstream services, and government. References ACON. (2006). "Ageing disgracefully: ACON's healthy GLBT ageing strategy 2006-2009." from www.acon.org.au. ACON. (2009). "Revolutions: ACON Strategic Plan 2009-2012." from www.acon.org.au. ACON. (2010). "Federal Government urged to protect human rights of gays, lesbians and transgenders. Media release." Retrieved May 28 2010, from http://www.acon.org.au/about-acon/Newsroom/Media-Releases/2010/18. Auger, J. A. (2003). Passing through: The end-of-life decisions of lesbians and gay men Halifax, Nova Scotia, Fernwood Publishing Birch, H. (2004). 鱨վ time! GLBT seniors ALSO matter. Report for the ALSO Foundation. South Yarra, ALSO Foundation Community Development Committee. Blevins, D. and J. L. J. Werth (2006). End-of-life issues for LGBT older adults Lesbian, gay, bisexual and transgender aging: Research and clinical perspectives. D. Kimmel, T. Rose and D. Steven. New York, Columbia University Press: 206-226. Cahill, S., K. South, et al. (2000). Outing age: Public policy issues affecting gay, lesbian, bisexual and transgender elders. Report for the National Gay and Lesbian Task Force Foundation. New York, The Policy Institute of the National Gay and Lesbian Task Force Foundation. Callan, M. and A. Mitchell (2007). "'It's none of my business': Gay and lesbian clients seeking aged care services." Geriaction 25(3): 31-33. Casey, C. (2003). The Sharon Kowalski case: Lesbian and gay rights on trial. Lawrence, Kansas, University Press of Kansas. Chandler, M., E. Panich, et al. (2005). "The lion, the witch and the wardrobe; Ageing GLBTIs (gay, lesbian, bisexual, transgender and intersex people) and aged care: A literature review in the Australian context " Geriaction 23(4): 15-21. Dane, S. K., B. M. Masser, et al. (2010). Not so private lives: National findings on the relationships and well-being of same-sex attracted Australians. Report for Parents and Friends of Lesbians and Gays (PFLAG). Brisbane, University of Queensland Feldman, S. and L. Parkinson (2005). Diversity in ageing. Canberra, Public Health Education and Research Program (PHERP), Department of Health and Ageing Gay and Lesbian Rights Lobby. (2010). "Take action. Campaigns for marriage equality and adoption law reform." Retrieved March 18, 2010, from www.glrl.org.au. Harrison, J. (2004). Towards the recognition of gay, lesbian, bisexual, transgender and intersex ageing in Australian gerontology. Adelaide University of South Australia. Harrison, J. (2006). "Coming out ready or not! Gay, lesbian, bisexual, transgender and intersex ageing and aged care in Australia: Reflections, contemporary developments and the road ahead " Gay and Lesbian Issues and Psychology Review 2(2): 44-53. Harrison, J. (2010). "Aged care crisis." Sydney Star Observer(1011): 19. Hash, K. (2006). "Caregiving and post-caregiving experiences of midlife and older gay men and lesbians." Journal of Gerontological Social Work 47(3/4): 121. Marmot, M. G. and R. G. Wilkinson (2006). Social determinants of health. Oxford & New York, Oxford University Press. Ministerial Advisory Committee on Gay and Lesbian Health (2003). Health and sexual diversity: A health and wellbeing action plan for gay, lesbian, bisexual, transgender and intersex (GLBTI) Victorians. Melbourne, Victorian Government Department of Human Services Pitts, M., A. Smith, et al. (2006). Private lives: A report on the health and wellbeing of GLBTI Australians. Melbourne, Gay and Lesbian Health Victoria and the Australian Research Centre in Sex, Health and Society Rolle, D. (2009). "Australia launches first gay retirement haven. Media release." from http://www.lintonestate.com.au/page.php?id=506. Smolinski, K. M. and Y. Colon (2006). "Silent voices and invisible walls: exploring end of life care with lesbians and gay men." Journal of Psychosocial Oncology 24(1): 51-64. Weeks, J., B. Heaphy, et al. (2001). Same sex intimacies: Families of choice and other life experiments London Routledge.      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