Long-term Services and Supports for Transgender People

May 2012 | Harper Jean Tobin, Policy Counsel, National Center for Transgender Equality

All older adults should have the supports they need as they age. They should also have the freedom to be who they are and to live their lives as they choose. Transgender people deserve to have their identities respected, regardless of the level of care they need.

That basic dignity is too often denied to a growing population of transgender older adults. A 2011 report by the National Center for Transgender Equality and the National Gay and Lesbian Task Force documented discrimination toward transgender patients in care settings ranging from private doctors’ offices, to emergency rooms, to mental health clinics and drug treatment programs. Respondents reported being harassed by staff or other patients or even being physically abused while seeking care. Nearly one in four transgender women and one in five transgender men reported having been refused medical treatment because of they were transgender. Respondents who had lower incomes or were people of color reported higher rates of mistreatment.[1]

A lack of basic cultural and clinical knowledge among providers regarding transgender people creates additional barriers to adequate care. For transgender older adults, this heightened level of disregard from healthcare professionals can lead to apprehension and distrust of healthcare providers and over time can lead to increased social isolation, delayed care-seeking, and poor health outcomes. And unfortunately, recent surveys indicate that these problems are also common in the provision of long-term services and supports.[2]

Most older adults would prefer to receive the services and supports they need at home or in a community setting, rather than in an institutional setting such as a skilled nursing facility.[3] While public funding for home- and community-based care is expanding, explicit protections for the rights of individuals receiving care are often lacking or unenforced. Explicit nondiscrimination protections for transgender consumers are a critical missing piece. Currently, providers may be covered as health care providers under the Affordable Care Act or as housing providers under the Fair Housing Act. Both of these laws prohibit sex discrimination, and courts and federal agencies now agree that this includes discrimination on the basis of gender identity or gender stereotypes. This means that, for example, it is unlawful to evict or deny housing to a person because the person is transgender, or to permit harassment of a transgender resident.

However, these laws do not cover all situations—and facilities, consumers, and even local and state officials today are largely unaware that these laws protect transgender people. Regulators could help ensure mistreatment in home- and community-based care is recognized and remedied by revising federal Medicaid rules to explicitly prohibit discrimination based on gender identity and sexual orientation in home- and community-based services.

Transgender older adults may feel they have particular reason to fear entering a nursing home because of potential discrimination, hostility, and violence from staff and other residents, and the possibility of receiving unequal care—yet health disparities and social isolation may put many at greater risk for requiring more intensive care. The federal Nursing Home Reform Act guarantees rights of privacy, dignity, autonomy, and freedom from restraint and abuse in facilities that accept Medicaid and Medicare. Facilities violate these rights when they refuse to respect the identities of residents, such as by refusing to permit or assist them in wearing clothing consistent with that identity; when they deny hormone medication or refuse to provide personal care because staff are uncomfortable with a resident’s body; when they isolate transgender residents; and when they fail to prevent routine harassment by residents or staff. [4] Facility managers and even state officials might not recognize that such practices are illegal. Again, regulators could help by revising federal nursing home guidelines to clarify these rights.

Regulations alone will not address these challenges—culture change is essential. For transgender people, improving cultural competence for long-term care workers and administrators is a critical component of improving the services and supports they receive. The National Resource Center on LGBT Aging trains hundreds of service providers nationwide on cultural competence and LGBT elders, and is a great resource for implementing a rigorous, comprehensive and evaluated training on these issues. Long-term care facility administrators, staff, surveyors and ombudspersons, as well as home health care providers, should receive training on the identities, needs, vulnerabilities and rights of transgender people. Federal and state agencies can support these changes by working with the National Resource Center and other community organizations to develop and promote training, best practices and other tools for providers.

Much remains to be done to improve the quality and availability of long-term services and supports for all people who need them. In light of the bias, ignorance, abuse and invasions of privacy they have often faced throughout their lives, anxieties about needing more intensive care as they grow older can be especially acute for transgender people. "That’s really my biggest fear right now, not having the freedom to control my dignity," Helena Bushong, a 61-year-old transgender and HIV/AIDS advocate in Chicago, said recently when asked about long-term care. "No, I’m not going to no nursing home. There’s no place. You can’t convince me there’s a place." For an aging transgender population, there is an urgent need to create that place in homes and communities around the country.

Adapted from a forthcoming report on transgender aging by SAGE and the National Center for Transgender Equality. For more information, see: INCLUSIVE SERVICES FOR LGBT OLDER ADULTS: A PRACTICAL GUIDE TO CREATING WELCOMING AGENCIES.

Harper Jean Tobin: As Policy Counsel, Harper Jean coordinates all aspects of advocacy on federal administrative policies and regulations for National Center for Transgender Equality. She received degrees in law and social work from Case Western Reserve University in Cleveland and is an alumna of Oberlin College.

[1] Jaime M. Grant, et al., Injustice at Every Turn: A Report of the National Transgender Discrimination Survey, National Center for Transgender Equality and National Gay and Lesbian Task Force, 2011: 73-74.

[2] See LGBT Older Adults in Long-Term Care Facilities: Stories from the Field, National Senior Citizens Law Center, 2011.

[3] See AARP Public Policy Institute, Profiles of Long-Term Care and Independent Living (2009), http://assets.aarp.org/rgcenter/health/fs_hcbs_hcr.pdf.

[4] See Natalie Chin et al., Asserting Choice: Health Care, Housing, and Property—Planning for Lesbian, Gay, Bisexual, and Transgender Older Adults, 43 Clearinghouse Rev. 522, 526-28 (2010).