Fear and Anxiety in Long Term Care: The particular case of LGBT older adults

By Mimi Lewis (CARIE student intern, MSW candidate at the University of Pennsylvania’s School of Social Policy and Practice, and a Hartford Fellow in Aging.) “Just, please, don’t put me in a nursing home.” You’ve probably heard this line; maybe you’ve even said it! It’s a common sentiment. For many, nursing homes represent boredom, isolation, and the occasional sad game of Bingo. For the nation’s growing number of lesbian, gay, bisexual and transgender older adults, the common anxiety around nursing home admission is heightened by fears of discrimination, isolation, and mistreatment. It’s hard to know exactly how many LGBT-identified older adults there are in the United States. UCLA’s Williams Institute on Sexual Orientation and the Law estimates that there are currently around 1.5 million lesbian gay, and bisexual older adults (data regarding transgender individuals is sorely lacking across all age groups) and set to grow to nearly 3 million by the year 2030. What we do know about LGBT older adults is that they may face significant barriers to successful aging. A study shared by the National Center on Elder Abuse shared that 26 percent of LGBT Baby Boomers fear discrimination as they age. Unlike their hetereosexual peers who rely primarily on family members for care, LGBT older adults are more likely to be single and childless, leaving them with less family support as they age. Additionally, LGBT older adults are more likely to live in poverty. Data from the Williams Institute suggests that 4.6 percent of hetereosexual couples live in poverty compared to 4.9 percent of senior gay male couples and an astonishing 9.1 percent of senior lesbian couples (2009). In addition to the potential lack of family and financial support, many of the social safety nets such as Social Security, Veteran’s benefits, and many employee pensions (to name a few) do not recognize same-sex couples. If the informal system of biological family support and the formal of government support do not equally benefit LGBT older adults, perhaps it should come as no surprise that the Long Term Care system is seen as unwelcoming to the LGBT community. A 2010 publication by a consortium of LGBT advocacy groups and the National Senior Citizens Law Center in shares stories of verbal harassment by staff and residents, refusal to accept medical powers of attorney for same-sex couples, refusal to use preferred pronouns or names, and even refusal of medical or personal care. There is enormous diversity in the policies and atmospheres of long term care facilities, but the public should be made aware of these stories. We can push for widespread reform within these communities. Current long term care resident and member of the LGBT Elder Initiative Ada Bello writes that first and foremost, intensive training should be provided to  service providers on LGBT issues. Agencies and facilities which provide quality care to LGBT older adults could be identified and lauded by community members and allies. Changes must also be made within the legislation that denies equal spousal benefits to same sex married couples–a change which would ensure a wider safety net for some LGBT individuals. Additionally, Bello advocates for the inclusion of gender and sexual identity on the list of legally protected minorities. This addition would open avenues for recourse when residents experience discriminatory treatment. Bello’s advice to all older adults whether in the LGBT community or not is to do “as much research as possible” about potential long term care living facilities. The Pennsylvania Department of Health’s website (www.health.state.pa.us) may be a good place to start; its Nursing Home Care section shares information on each nursing home, including any complaints made by residents or visitors. Additionally, for those interested in continuing the conversation about LGBT experiences and advocacy in Long Term Care, the LGBT Elder Initiative is hosting “Staying Out in Long Term Care” on March 22nd at 10 am to educate older adults about their rights in long term care and to discuss policy suggestions for care providers. More information can be found at www.lgbtei.org.