Two months after my mother entered a nursing home at age 73, she made a firm request to the home’s administration: add a Spanish-language channel to the lineup being offered throughout the facility. They obliged, lightening an otherwise grueling life transition for my mother, and her room soon filled with the sounds of programs she had watched much of her adult life. While it was a relatively modest concession on behalf of the nursing home, this decision was profoundly important to my mother. In the context of long-term care, it embodied the “person-centered” philosophy that has become increasingly common in this sector, affirming that individuals across the spectrum deserve supports tailored to their unique needs and aspirations.
At the time, six years ago, I was working in the national LGBTQ+ aging field, helping address the profound challenges facing LGBTQ+ older people: extreme isolation, widespread discrimination across the lifespan, an array of crushing health and economic disparities, and a pervasive invisibility in both public policy and civic life. Yet that experience with my mother—more than any other for me—brought to light how her personal struggle for cultural and linguistic competence as an older, Latina immigrant with limited English proficiency was profoundly linked to my political struggle for queer affirmation in long-term care. Both of us deserve to age in a system where our individual realities are acknowledged, and our social disadvantage is addressed. Both of us deserve a genuine home.
This past April, the Human Rights Campaign Foundation and SAGElaunched a major project to help transform the retirement experience for LGBTQ+ older people across residential settings. (Full disclosure: I serve on the advisory council for this project.) The Long-Term Care Equality Index (LEI)represents “the first-ever nationwide assessment of how long-term care facilities are treating their LGBTQ+ residents.” The LEI will assess, benchmark, and ultimately improve the policies and practices of long-term care residential settings (nursing homes, assisted living, continuing care retirement communities, and more) regarding their LGBTQ+-inclusiveness.
Achieving these results would be no small feat—the residential care industry includes more than 44,000 establishments and earned about $183 billion in revenue in 2016, according to PHI’s analysis of data from the U.S. Bureau of Labor Statistics (BLS) and the U.S Census Bureau, respectively. As millions of older people—many who are LGBTQ+—age in these communities, this index will increasingly resonate with importance. Moreover, the need for an LGBTQ+-friendly long-term care workforce will become more pressing–especially direct care workers, who represent the largest segment of long-term care workers who will benefit from this project.
Nationwide, more than one million direct care workers provide daily support to older people and people with disabilities in the residential communities being targeted by this project (according to PHI’s analysis of BLS data). Though grossly undervalued, this workforce serves as the paid frontline of long-term care, assisting residents of all gender identities and sexualities with critical daily tasks, such as dressing, bathing, and eating, and more, as well as with clinical tasks such as blood pressure readings and assistance with range-of-motion exercise (for home health aides and nursing assistants, who are authorized to provide this level of support). These workers are a lifeline for millions of people, especially LGBTQ+ people, who have thinner support networks than the general population and are twice as likely as their heterosexual peers to live alone.
Despite their essential role, these workers—just like any other group of health care professionals—might operate with an array of LGBTQ+-related biases that prevent them from fairly delivering care. Here, I’ll always remember the older gay man who approached me at a conference a few years ago to relate a heartbreaking story about a home care worker who refused to lift or bathe his dying partner, whom the worker mistakenly assumed had AIDS. (This worker also erroneously assumed this condition was transmittable through physical contact, another topic that deserves training). While most direct care workers are committed to delivering quality supports with integrity, social bias operates as a pernicious, often undetectable phenomenon that leaves none of us untouched.
LGBTQ+ bias is also structured into the policies and practices of institutions, which the Long-Term Care Equality Index seeks to tackle. The Health Care Equality Index, which provides a template for the LEI, assesses health care facilities in areas such as nondiscrimination policies, staff training, services and supports for patients, employee benefits and policies, and patient and community engagement. The goal is to create care environments where discrimination is minimized and all LGBTQ+ people—as patients, visitors, and employees—are affirmed. An index geared at long-term care will hopefully achieve the same results, helping LGBTQ+ people thrive as residents, visitors, and workers. (In the future, this project will need to address the home and community-based services industry, where most older people receive care.)
Workforce training will help complement this endeavor, equipping residential staff with the requisite skills and knowledge to properly support LGBTQ+ residents. SAGE’s SAGECare Cultural Competency and Credentialing program has set a useful precedent in this regard, training more than 57,000 staff and credentialing 300+ organizations in 47 states since 2016, according to SAGE’s Director of National Education Initiatives Sherrill Wayland. (SAGECare emerged from the historic National Resource Center on LGBTQ+ Aging, which obtained its original LGBTQ+ cultural competence training from PHI’s curriculum design team.) A successful training program for residential care staff would ensure that the worker who refused to touch the older gay man’s partner would develop the knowledge, attitudes, and skills to create a safe environment for all LGBTQ+ older adults.
If you’re a residential long-term care facility, you might consider signing the LEI project’s “Commitment to Caring Pledge,” which indicates your commitment to adopt policies and practices that support LGBTQ+ residents and employees throughout your facility. (LGBTQ+ organizations and organizations working in the aging field can also endorse the LEI, encouraging their peers in long-term care to become more LGBTQ+-inclusive.) Making this commitment is not only right in principle, it also makes good business sense; by creating diverse and inclusive workplaces and care environments, a long-term care provider can achieve a variety of goals (improving care, reducing turnover, attracting a wider pool of highly qualified candidates, and more) and reap a positive return on investment.
When my mother advocated for a Spanish-language channel, she helped create a more inclusive nursing home for all its residents, then and in the future. She reminded the nursing home’s leadership that their residents have distinct histories, challenges, and dreams, and that meeting their specific needs benefits the entire nursing home. We all have our favorite television channels. We all want our country’s institutions to reflect our lives and improve our livelihood. And we all deserve to age well supported, in good health, across settings we proudly consider our homes.
