Dr Mark Hughes Associate Professor School of Arts & Social Sciences Southern Cross University

1. Experiences and issues faced by lesbian, gay, bisexual, transgender (LGBT) carers, and those for whom they care, and implications for service provision Dr Mark Hughes Associate Professor School of Arts & Social Sciences Southern Cross University mark.hughes@scu.edu.au

2. Some key concepts • LGBT: lesbian, gay, bisexual and transgender • Transwoman – male to female trans person • Transman – female to male trans person • Homophobia: the fear, hatred or mistrust of LGB people often expressed in overt displays of discrimination • Heterosexism: the privileging of heterosexuality over other sexual orientations and identities – creates obstacles for LGB people in living their daily lives • Heteronormativity: the (often implicit) assumption that heterosexuality is the norm and is universal – can render non-heterosexual people invisible

3. New York LGBT carers survey • 46% of NY survey of 341 LGBT people aged 50+ providing care now or within past 5 years • 22% (of 341) provided care to member of family of origin (mainly parents) & 24% to family of choice (majority partners & friends) • One third providing care to family of origin believed more was expected of them because of perceived fewer family responsibilities • 41% of family of choice carers were supporting a person with HIV/AIDS • 59% therefore were providing care in relation to other illnesses commonly found in later life

4. New York survey cont. • Use of formal services low among both groups of carers • 41% of family of origin carers & 26% of family of choice carers had difficulties with formal providers, often arising from a fear of discrimination • No difference between men and women re: type of care provided or no. of hours spent caring • Among both groups, women carers reported greater carer burden, took more time off work, concealed their sexual identity more, and had their social life limited more Cantor, M., Brennan, M. & Shippy, A. (2004) Caregiving among Older Lesbian, Gay, Bisexual, and Transgender New Yorkers. New York, NY: National Gay and Lesbian Taskforce Policy Institute Shippy, R.A. (2007) We cannot do it alone: the impact of informal support and stressors in older gay, lesbian and bisexual caregivers. Journal of Gay and Lesbian Social Services, 18(3/4), 39-51.

5. QAHC Survey 2008 • Qld Survey 2008 (443 LGBT people, all ages) identified wide range of sources of support expected in later life: • Same-sex partners • LGBT friends • Heterosexual friends • Community services • Biological family • 10.8% (of 443) providing direct care, of these: • 40.4% caring for parents • 31.9% caring for partner

6. QAHC Survey 2008 cont. • 65.2% concerned that their sexuality or gender identity would affect quality of services provided in older age • Main concerns about using aged care or carers services • Not recognising same-sex relationship (51.5%) • Services not inclusive of LGBT people (44.7%) • Service providers being discriminatory (42.4%) • Services being provided by religious organisations (41.5%) • Lack of LGBT specific services (31.4%) • Carers more likely to be concerned about loss of independence, having no one to rely on emotionally, & that their identity will result in lower standard of care

7. QAHC Survey 2008 cont. • Services wanted: • Information & referrals: 64.1% • Social groups/events: 58.7% • Support groups for LGBT seniors & carers: 55.5% • Co-ordinating & supporting LGBT seniors to access aged care or carers’ services: 54.9% • Advocacy for LGBT seniors & carers: 54.9% • LGBT specific resources on ageing/carers’ issues: 51.2% • Provision of community services to LGBT seniors & carers (i.e. direct service provision): 44.7%

8. Critical issues for LGBT people • Growing up in a time when homosexuality was illegal & highly stigmatised • Actual current or prior experience of discrimination • Expectation of discrimination when accessing mainstream services: impact on help seeking • Ageism within LGBT communities, esp. in commercial ‘scene’ • Desire for LGBT specific services or providers • Desire for mainstream services to be more LGBT friendly

9. Critical issues for LGBT people cont. • Negotiating privacy in identity disclosure • Need for ‘cultural competency’ with LGBT communities • Need for recognition of complexity of sexuality & gender identity & community affiliation • Breaking down ‘heteronormativity’ – assumption that all people are heterosexual

10. Particular issues for trans people • Many people fear revealing a trans identity • Lower use of health care services – often relying on emergency hospital care in a crisis • Hormone therapy can lead to other health issues (e.g. testosterone therapy is associated with heart disease) • Violence, harassment & discrimination are common experiences • Particular concerns about experiences accessing community or residential aged care • Very limited research re: transgender caregiving

11. Issues in common with other carers • Difficulties recognising oneself as a caregiver • Gendered nature of caregiving – needs more research • Variations re: social support & care networks • How formal carers, informal carers & care-receivers work together (esp. re: negotiation of identity) • Concerns: re: social isolation (esp. for older gay men) • Concerns re: managing work & caring responsibilities • Impact of caring on mental health & general wellbeing • Recognition of the relationship, esp. when in contact with formal providers

12. Some ideas for carers services • Develop cultural competency within your teams – training from is available (e.g. via QAHC & ACON) • Build relationships with LGBT communities • LGBT community organisations • Social groups • Friendship networks • Get involved in advocacy campaigns • Recruit staff/volunteers who are LGBT or who have expertise in working with these communities

13. Some ideas for carers services cont. • Develop & display prominently LGBT positive messages • Back this up with responsive & non-discriminatory services • Check forms/information sheets etc • Consider strategies to connect people across distance (e.g. via social networking media)

14. Current & future research priorities • How LGBT people’s motivations & transitions into caregiving are similar or different to other carers • How LGBT carers’ & care-receivers’ identities are disclosed/responded to in delivery of formal care • How carers interact with others in support network & develop understanding of care-receiver’s needs • How conflict is managed in these relationships • The impact of these interactions & network participation on health & wellbeing

15. My publications on LGBT ageing Hughes, M. (2003) Talking about sexual identity with older men. Australian Social Work, 56(3), 258-266. Hughes, M. (2004) Privacy, sexual identity and aged care. Australian Journal of Social Issues, 39(4), 381-392. Hughes, M. (2004) Privacy in aged care. Australasian Journal on Ageing, 23(3), 110-114. Hughes, M. (2006) Queer ageing. Gay and Lesbian Issues and Psychology Review, 2(2), 54-59. Hughes, M. (2007) Older lesbians and gays accessing health and aged care services. Australian Social Work, 60(2), 197-209. Hughes, M. (2008) Information placed in trust: social workers and older gay men on talking about sexual identity. Geriaction, 26(1), 15-20. Hughes, M. (2008) Imagined futures and communities: older lesbian and gay people’s narratives on health and aged care. Journal of Gay and Lesbian Social Services, 20(1/2), 167-186. Hughes, M. (2009) Lesbian and gay people’s concerns about ageing and accessing services. Australian Social Work, 62(2), 186-201. Hughes, M. (2010) Expectations of later life support among lesbian and gay Queenslanders. Australasian Journal on Ageing. 29(4), 161-166. Hughes, M. & Heycox, K. (2010) Chapter 9: Sexuality and intimacy. In Older People, Ageing and Social Work: Knowledge for Practice. Sydney: Allen & Unwin. Hughes, M. & Kentlyn S. (in press) Older LGBT people’s care networks and communities of practice: a brief note. International Social Work.

16. Some LGBT carers resources Age Concern UK: http://www.ageconcern.org.uk/ageconcern/lesbian_gay_links.asp Alzheimers Society UK: http://alzheimers.org.uk/Gay_Carers/ American Cancer Society: http://www.cancer.org/docroot/spc/content/spc_1_Tips_for_Gay_and_Lesbian_Caregivers.asp American Society on Aging: http://www.asaging.org/networks/lain/lgainlinks.cfm?category=CAREGIVE Brotman, S., Ryan, B., Collins, S., Chamberland, L., Cormier, R., Julien, D., Meyer, E., Peterkin, A. & Richard, B. (2007) Coming out to care: caregivers of gay and lesbian seniors in Canada. Gerontologist, 47, 490-503. Cantor, M., Brennan, M. & Shippy, A. (2004) Caregiving among Older Lesbian, Gay, Bisexual, and Transgender New Yorkers. New York, NY: National Gay and Lesbian Taskforce Policy Institute. Family Caregiver Alliance (USA): http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=409 Fredriksen-Goldsen, K.I. & Hooyman, N.R. (2007) Caregiving research, services, and policies in historically marginalized communities: where do we go from here? Journal of Gay and Lesbian Social Services, 18(3/4), 129-45. Grossman, A.H., D’Augelli, A.R. & Dragowski, E.A. (2007) Caregiving and care receiving among older lesbian, gay, and bisexual adults. Journal of Gay and Lesbian Social Services, 18(3/4), 15-38. Munro, I. & Edward, K. (2008) The lived experience of gay men caring for others with HIV/AIDS: resilient coping skills. International Journal of Nursing Practice, 14, 122-8. Reynolds, N. & Alonzo, A. (1998) HIV informal caregiving. Research in Nursing & Health, 21, 251-60. Shippy, R.A. (2007) We cannot do it alone: the impact of informal support and stressors in older gay, lesbian and bisexual caregivers. Journal of Gay and Lesbian Social Services, 18(3/4), 39-51. Shippy, R.A., Cantor, M.H. & Brennan, M. (2004) Social networks of aging gay men. Journal of Men’s Studies, 13(1), 107-20. Williams, M.E. & Freeman, P.A. (2007) Transgender health: implications for aging and caregiving. Journal of Gay and Lesbian Social Services, 18(3/4), 93-108.

17. Australian reports on LGBT ageing ACON (2006). Ageing Disgracefully: ACON’s Healthy Ageing Strategy 2006-2009. Surry Hills: ACON Barrett C. My People: A Project Exploring the Experiences of Gay, Lesbian, Transgender and Intersex Seniors in Aged-care Services. Melbourne: Matrix Guild of Victoria and Vintage Men, 2008. Barrett, C., Harrison, J & Kent, J. (2009) Permission to Speak: Determining Strategies Towards the Development of Gay, Lesbian, Bisexual, Transgender and Intersex Friendly Aged Care services in Victoria. Melb: Matrix Guild Vic Inc. www.matrixguildvic.org.au/project.html Birch H (2004) About Time! GLBT Seniors ALSO Matter: Strategic Plan, ALSO Foundation, Melbourne. Chamberlain C & Robinson P (2002), The Needs of Older Gay, Lesbian and Transgender People: A Report Prepared for the ALSO Foundation, RMIT University, Melbourne. Harrison, J & McNair, R (2002)Life Stage Issues in What’s the Difference? Health Issues of Major Concern to GLBTI Victorians. Melbourne: Ministerial Advisory Committee on Gay and Lesbian Health, Department of Human Services Victoria, 37-44. http://www.dhs.vic.gov.au/phd/macglh/difference.htm Lienert, T., Cartwright, C. &Beck, K. (2010) The Experiences of Gay, Lesbian, Bisexual and Transgender People around End-of-Life Care. Scoping Study Report. Coffs Harbour: Aged Services Learning and Research Centre, Southern Cross University. Pitts, M., Smith, A., Mitchell, A. & Patel, S. (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. QAHC (2008). The young, the ageing and the restless: Understanding the experiences and expectations of ageing and caring in the Qld LGBT community. Brisbane: QAHC. www.qahc.org.au/files/u17/Ageing_Report.pdf

18. Other Australian resources on LGBT ageing Chandler, M., Margery, M., Maynard, N., Newsome, M., South, C., Panich, E. & Payne, R. (2004). Sexuality, older people and residential aged care. Geriaction, Summer, 5-11 Chandler, M., Panich, E., South, C., Margery, M., Maynard, N. & Newsome, M. (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, Summer, 15-21 Harrison, J. (1999) A lavender pink grey power: gay and lesbian gerontology in Australia. Australasian Journal on Ageing, 18(1) pp. 32-7. Harrison, J. (2001) ‘It’s none of my business’: gay and lesbian invisibility in aged care. Australian Occupational Therapy Journal. 48, 142-5. Harrison, J. (2002) What are you really afraid of? Gay, lesbian, bisexual, transgender andintersex ageing, ageism, and activism. Word is Out, 2, March, 1-11. http://www.rainbowvisions.org.au/resources/wordIsOut_by_JoHarrison.pdf Harrison, J. (2004) Discrimination and older gays: surviving aged care. Equal Time, 61, August, 1-3, http://www.lawlink.nsw.gov.au/lawlink/adb/ll_adb.nsf/vwFiles/ET%20Aug%2004%20.pdf/$file/ET%20Aug%2004%20.pdf Harrison, J. (2005) Pink Lavender and Grey: Gay, lesbian, bisexual, transgender and intersex ageing in Australian gerontology. Gay and Lesbian Issues and Psychology Review, 1(1), 11-16 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. Phillips, J. & Marks, G. (2006). Coming out, coming in: how do dominant discourse around aged care facilities take into account the identities and needs of ageing lesbians? Gay and Lesbian Issues and Psychology Review, 2 (2), 67-77 Tolley, C., & Ranzijn, R. (2006). Heteronormativity amongst staff of residential aged care facilities. Gay and Lesbian Issues and Psychology Review, 2(2), 78-86.