Nick, a trans man whose name has been changed to protect his privacy, has been considering a gender-affirming surgery — but he’s not looking to alleviate dysphoria.
“I’m worried about discrimination as I get older,” said Nick, who is 64. “I don’t want to be mistreated.”
Right now, Nick lives stealth — meaning he passes as cisgender and doesn’t publicly acknowledge or discuss his trans experience. Many people in his life — including his coworkers, some friends, and even some medical providers — don’t know he’s trans. This aspect of his identity would be harder to keep private if were to become less independent — a part of life he’s planning for as he ages.
Nick is in a support group with other trans folks over 60, many of whom live the same way and have the same concerns. They worry they won’t be respected by home health aids or other care providers, who might not be competent or affirming. Additionally, they express concerns regarding queerphobic policies within rehabilitation facilities and nursing homes, as well as the risk of elder abuse.
“If I get surgery, they wouldn’t have to know I’m trans,” Nick said. “It’s a safety thing.”
As early as 2014, the American Psychological Association has recognized the negative impact of what they called “dual discrimination” for LGBTQ+ people who are also older adults — highlighting the toll of even further marginalization for those who have additional minority experiences (such as women, people of color, those who are HIV positive, or trans people, for example). Stigmatization and mistreatment continues to persist ten years later with very little progress made in mainstream spaces, and today’s political climate is especially hostile for trans people.
What does elder abuse look like for LGBTQ+ adults?
Elder abuse is a problem for 1 in 6 elderly people worldwide. This can include physical or mental and emotional neglect, physical or sexual violence, financial exploitation, and manipulation — all concerns queer seniors need to consider in addition to added concerns that are more specific to LGBTQ+ people.
Isolation and withdrawal are often a first sign that something is wrong. Sometimes, this can be an indicator of manipulation or abuse. Bodily changes, which can be subtle and occur over time, include changes in weight and the worsening of a medical condition that was previously controlled. If aspects of LGBTQ+ health are going unaddressed, a provider or caregiver isn’t doing their job.
Microaggressions and harassment are abusive, and any behavior that causes stress shouldn’t be tolerated. It’s also abusive for caregivers to insist on using or displaying legal names, gender or sex markers, and other information that doesn’t align with a person’s identity. Trans people should never be forced out of community or living spaces that align with their gender. Even accidental misgendering can cause negative impacts and should be addressed. Displaying information or talking about a person’s trans identity, HIV status, or other personal and medical information without asking is abusive.
Mental health can signal the need to evaluate the impact of what’s happening in life. Pay attention to thoughts, behaviors and feelings that seem to have changed.
What problems exist for LGBTQ+ people in nursing homes?
“It’s very understudied but very widely known to be an issue that LGBTQIA+ folks have historically feared and delayed entering facilities — like post-acute, long-term care facilities — because of fears or even past experiences of discrimination or mistreatment,” said Michael Danielewicz, MD, director of the Pride program at the Jefferson Center for Healthy Aging.
People who are living out — openly as their authentic selves — “feel forced back into the closet or feel that they can’t be themselves in these facilities,” Danielewicz explained. Having to hide queer identity in a nearly constant communal setting (public dining, shared rooms and community-centered programming) can negatively impact mental health.
It’s important to introduce patients to affirming opportunities for personal growth and socialization, but many facilities lack LGBTQ+ inclusive policies, programming and community spaces. Even artwork and environmental factors that impact quality of life don’t reflect queer experiences, Danielewicz explained. These facilities, which have historically catered cis-het people, continue to ignore or forget that queer people are part of their targeted demographic.
It’s not just the environment and policies that make people feel like they can’t be themselves. Danielewicz said that hostile peers can make people feel unsafe. Staff members, including physicians, might also lack competencies.
It’s possible for a patient to maintain a relationship with their preferred primary care provider even if they’re living full-time in a skilled nursing facility. It doesn’t often happen, Danielewicz said, due to inconvenience regarding prescription management — but it is an option and can help people feel like they have an advocate.
Finding safety and affirmation by aging in place
“It was a bit eye-opening to see some of the challenges in the community,” said Brett Shay, a gay man who founded Chosen Family Home Care — a non-medical home care agency that helps people live in their own homes longer.
Remaining at home is often a goal for people who want the comforts of a familiar environment or hope to protect themselves from issues that could emerge elsewhere — but the cost can be prohibitive. Depending on a person’s disabilities, it might be too expensive to find or renovate a home to accommodate their needs. Paying home care workers can also be a challenge.
According to data gathered by the Movement Advancement Project in 2016, almost half of older adults who are trans live at or below the poverty line and would likely use Medicaid benefits to pay for the care they receive. That limits their ability to find queer-competent providers — but home care workers are not out of reach.
“Pennsylvania is definitely one of the more permissive states when it comes to caregiver choice,” said Tim Deserable, Chosen Family’s director of operations. “You do not have to be a certified home health aide. You can be somebody who just has the capability to be a caregiver.”
Each state has different training requirements for these kinds of programs, but for many LGBTQ+ Philadelphians, choosing someone they already know can offer peace of mind.
Chosen Family helps loved ones navigate the process to be recognized and paid by the state. The company can also assign an LGBTQ-competent home care worker.
“A lot of members of the LGBT community or caregivers have come to us because they felt they would have more of a voice and be more understood in our organization,” Shay said.
Finding skilled cared when you need more help
Part of advocacy is learning how to ask the right questions. Those seeking support can directly ask if and how staff are trained to handle a specific concern.
For instance, who will have access to files that include a legal name and will that legal name be displayed in any public settings? Is there a way to include a chosen name and pronouns in documentation to avoid awkward encounters with new caregivers?
It’s also helpful to learn if workers have cared for trans, HIV-positive or queer patients in the past and if they can competently provide care regarding a specific need.
Danielewicz said to ask what leaders or staff have learned from their LGBTQ+ or otherwise marginalized patients, as this might show their willingness to address needs they haven’t dealt with before. He said another important thing to check is how the organization has tangibly attempted to promote LGBTQ+ inclusivity.
He recommends looking at events calendars to understand what kinds of activities are promoted and to get a feel for how intersectional the offerings are. Are there Pride events or Pride flags on display in the building? People can also ask for data about how many LGBTQ+ people are being served by an organization.
Broader questions can also help people determine safety. “Ask what levels of cultural humility training their staff have undergone,” Danielewicz said, explaining that this is a baseline test to figure out if staff is aware of even minimum standards for inclusive care. Policies around sex, relationships and roommates are equally important.
Finding support when there’s a problem
Seeking an ally might feel daunting, but the important thing is to speak up. Tell friends and community members — including current or former healthcare professionals you trust — if something isn’t right.
“I try to ask all my new patients, especially those who are in my Pride program, to name a surrogate decision maker — to name an advocate,” said Danielewicz. Because chosen family is such a big part of LGBTQ+ dynamics, it is especially important to document these preferences. This can be done through an advance directive or living will, which is a legal document that doesn’t require a lawyer or notary to complete in New Jersey, Pennsylvania and Delaware.
Deserable suggests learning more through Five Wishes, an organization that helps people develop advance directives. A sample document shows a structured approach that offers language to communicate about wants and needs people might otherwise forget about. Naming a trusted person as an advocate can be reassuring.
Danielewicz said that skilled care facilities are heavily regulated — which means there are formal processes for both planning care and addressing concerns.
“Every facility has a grievance officer,” underlined Danielewicz. Coordinating care with a social worker can help patients avoid negative situations and document their asks, but filing a complaint will formally document queerphobic incidents.
“And if things are not working, there should be an avenue to transfer,” Danielewicz said, explaining that even Medicaid users have options for care and shouldn’t feel imprisoned by a facility that isn’t a good fit.Involve an elders or LGBTQ+ advocacy group if needed — like Philadelphia Corporation of Aging (PCA), which Danielewicz said is an underutilized resource. The organization recently launched an LGBTQ+ advisory council.
Learning as much as possible about patient rights, LGBTQ+ organizations, and other resources will prepare patients should they ever need to self-advocate.