Lisa Oakley loved living in Craig, Colorado. Deer roamed the backyard, and every summer, she and a buddy would take her 16-foot camp boat out on the reservoir, where they’d fish for pike and smallmouth bass.
In recent years, diabetes complications had curtailed her outdoors activities, but in a city four miles from end to end, she still reveled in Craig’s small-town friendliness. She felt at home. More than that, she felt accepted.
Last year, when she became unable to care for herself alone, Oakley, a U.S. Army veteran, hoped to live at Craig’s local long-term care facility and remain in the community where she’d felt comfortable for 25 years.
Instead, she was denied placement and not just there, but at dozens of long-term care facilities statewide. To Oakley and her advocates, the reason for many of those rejections was simple – and illegal: Because she’s transgender.
“When they found out I was transgender, a lot of facilities didn’t want me,” said Oakley, who eventually landed at a skilled nursing facility in Grand Junction, nearly three hours away from Craig. “A lot of transgender people, I’m sure, face the same thing. We’re humans, just like everybody else.”
The case, advocates say, illustrates both the challenges that LGBT elders face as they age and require long-term care – issues destined to escalate as the elder LGBT population grows. It also shows, they say, that existing protections aren’t enough, underscoring the importance of passing the federal Equality Act, which would prohibit discrimination based on sex, gender identity and sexual orientation.
“These are incredibly vulnerable situations,” said Karen Loewy, senior counsel for Lambda Legal, an LGBTQ rights advocacy group. “When your physical health has deteriorated to the point that you’re no longer able to care for yourself in your own home, you are relying on people for incredibly intimate care. And that vulnerability is just magnified when the message you’re getting is that a facility or its staff disrespect you.”
A spreadsheet log kept by social worker Cori Martin-Crawford tells the story: When she first looked to place Oakley starting in October 2020, multiple facilities declined, citing COVID-related admissions freezes.
But as facilities resumed taking referrals in early 2021, Oakley’s rejections continued. A few wouldn’t allow her to smoke or simply said they couldn’t accommodate her medical needs. In other cases, facilities seemingly eager to review Oakley’s referral went cold once they learned she was transgender and desired a female roommate.
Several told Martin-Crawford that Oakley, unable to afford gender-affirming surgery, would require a private room; none were available, they said. A representative for another 30 facilities refused with no reason given. Others promised to review Oakley’s case but failed to follow up. In all, Martin-Crawford, accustomed to placing clients within 48 hours, struck out with more than 90 elder-care homes.
“It seemed apparent to me that it was discrimination,” Martin-Crawford said. “One facility told me, ‘Maybe someone like her would have better luck on the Front Range’”– a reference to Colorado’s central region, home to the state’s largest and more progressive cities.
With Oakley angling to stay in Craig, Martin-Crawford in January once again appealed to the local care facility, Sandrock Ridge, which had started taking new residents. According to her notes, an administrator there said Oakley “would require a private room because she still has her ‘boy parts’ and cannot be placed with a woman.”
Though the facility relented under threat of litigation, Loewy said, Oakley by then had been relocated to Grand Junction, and Sandrock Ridge administrators stalled to the point that Oakley’s rapidly deteriorating health and reliance on a Grand Junction urologist made a move impossible.
Officials for Sandrock Ridge did not respond to requests for comment.
“The reality is that Lisa is never going back to the home she built in terms of the people closest to her,” Loewy said. “They’re not young; they’re not people who can pop down to Grand Junction at the drop of a hat. So, there’s a good chance she’s not going to see the people she cares most about ever again. And that’s not something anyone should have to experience because of discrimination.”
For Oakley, the move has been isolating. She misses the smell of fresh-cut hay in the countryside and letting her dog, Brownie, run loose in the backyard.
And the rejection wounded her, she said.
“I feel sad that I was not being treated as a real human being…. More like a freak,” she said.
Effects of lifelong discrimination
Estimates of the elder LGBTQ population range from just over a million to 2.6 million, but all agree the group is growing rapidly as increasing tolerance prompts many to be more open about their identity.
Such data has not been reliably collected, and some remain reluctant to share it.
“Especially for the older LGBT community, who grew up when being gay was dangerous, or even illegal, to stay safe they had to develop this silence about who they are,” said Carey Candrian, an LGBTQ elder-care expert and associate professor at the University of Colorado School of Medicine. “That stays with them, despite growing acceptance and new laws. They’re fearful to disclose their identity.”
Older LGBT adults, and especially older trans adults, are more likely to need institutional care than their straight or cisgender counterparts. In the United States, Loewy noted, most caregiving is done by family members – but many of this generation’s LGBT elders came out in an era when families were more likely to shun them.
“That’s not a source they can count on,” she said.
Additionally, LGBT elders are less likely to be married or have children, Candrian said, meaning they’ve missed out on spousal benefits and can’t rely on kids’ support in later years.
Having lived a lifetime of discrimination can prove harmful. For those who’ve come out, it can mean jobs lost or missed employment opportunities; one in three LGBT adults lives at or below poverty level, Candrian said.
Those who’ve hidden their identity, meanwhile, have higher rates of cardiovascular, emotional health and substance abuse issues while being less likely to seek medical care. According to the American Heart Association, a majority of LGBTQ adults and 70% of transgender or gender-non-conforming individuals report experiencing discrimination from a health care provider, “so they’re not crazy for staying quiet,” Candrian said. “The discrimination is real, and so are the disparities.”
A 2014 study cited by the National Institute on Minority Health and Health Disparities showed that for sexual and gender minorities, living in communities with high levels of anti-LGBT prejudice can shorten life by an average of 12 years compared to those in more welcoming communities.
Long-term care facilities remain largely unprepared to handle such issues. According to Sherrill Wayland of Services and Advocacy for GLBT Elders, a New York-based advocacy organization known as SAGE, agency research found one in six LGBT adults were “extremely concerned” about facing discrimination in assisted-living situations.
“Many LGBT adults go back into the closet when they enter elder care,” Candrian said. “When they go, they’re often met with a script that fits people who are straight, who have kids and traditional families, and they feel shut out pretty quickly.”
Transgender people are even more stigmatized and suffer greater health disparities, said Karen Fredriksen Goldsen, a University of Washington professor who is leading a longitudinal study on LGBT health.
“People have been denied access or treated with disrespect in long-term care facilities,” Goldsen said. “Others may refuse to call them by their correct names and pronouns. They may not have access to gender-neutral bathrooms, and staff may not know how to handle rooming them, so they end up isolated.”
Finding a facility willing to take them in can be challenging.
“Senior settings have not done the work they need to do to understand the needs and rights of older LGBT adults,” Loewy said. “And rarely are people who experience discrimination in obtaining a long-term care setting in a position to do anything about it. Their energy understandably and reasonably goes to securing a roof over their heads.”
‘We hired you as a male driver’
Oakley, a Chicago native, enlisted in the U.S. Army at 19, deciding to make the best of it as a truck driver. She served four years.
Since her early teens, she’d felt like two people in one body, even as she adhered to societal standards. She married three times.
Her third wife, who died of a heart attack in 1996, knew her then-husband felt more comfortable as a female.
“She was really cool about it,” Oakley said. “I would dress up female for Halloween. That was my one night of reality, versus my other 364 days as a lie.”
In 1985, the couple moved to Craig, 200 miles from Denver in rural northwest Colorado, where Oakley’s in-laws lived.
Oakley quickly took to Craig, a small city of 9,000, and after her wife died in 1996, she decided to begin pursuing her transition. In 1999, she began traveling to California for hormone treatments, barely getting by on her pizza-delivery driver wages.
“My boss told me I had to tell everybody at work,” Oakley said. “They were cool with it until I started my breast development. Some didn’t understand it.”
One day, a corporate company executive confronted her at her workplace.
“He said, ‘We hired you as a male driver, and you will revert back or there will be serious consequences,’” Oakley remembered. “I went back to work in proper female attire and was told I was being written up. They suspended me that night.”
As the paperwork moved up the chain, the company quickly relented, she said, and her boss apologized.
A back injury forced Oakley into work in home health care and social services, jobs she said felt better suited, as they tapped her mothering instincts. She cooked for the homebound and drove disabled people to appointments.
She retired two years ago, but the diabetes that had plagued her for 20 years intensified. In October 2020, she was rushed to the ER with elevated blood sugar, and doctors determined she would require long-term care, no longer able to walk on her own or self-propel a manual wheelchair.
Calls for federal protection
As Martin-Crawford struggled for months to find Oakley a home, she contacted several state agencies to see what could be done. As private entities, she was told, long-term facilities could decline referrals for almost any reason.
Kathleen Sullivan, executive director of Openhouse, a San Francisco agency serving LGBTQ+ seniors, called Oakley’s situation “disheartening.”
“Colorado has made great strides, but clearly there is still a lot of work to be done,” she said.
The ordeal unfolded despite apparent protections on multiple fronts. This fall, Colorado lawmakers passed a bill expanding discrimination protections to include gender identity in multiple areas, including housing and health care, becoming one of 22 states to explicitly cite such protections.
“Colorado has really robust nondiscrimination protections in housing and in public accommodations,” Loewy said. “So, it’s really a great question how on earth this happened. It’s frankly a lack of understanding in long-term care settings about the needs and rights of older LGBT adults.”
She and others say Oakley’s experience demonstrates the importance of passing the federal Equality Act.
“These care facilities turned her away despite existing sex discrimination protections in both the Fair Housing Act and Section 1557 of the Affordable Care Act barring discrimination against transgender people in housing and health care,” Loewy wrote in a September letter sent to Colorado Sens. Michael Bennet and John Hickenlooper, both Democrats and the act’s U.S. Senate sponsors.
Passing the Equality Act, she continued, would be “a powerful statement of principle regarding the equal place LGBTQ people of all backgrounds deserve within our American family.”
Cristina Crawford of the American Health Care Association/National Center for Assisted Living, based in Washington, D.C., said the organization could not comment specifically on Oakley’s case. “We believe every person, regardless of gender identity, deserves access to high quality, long-term care,” the group said in a statement. “Long-term care and senior living prides itself on delivering person-centered care, and that means we must honor each unique individual and foster inclusive communities.”
Advocates say that even when LGBT anti-discrimination policies do exist, people aren’t always aware. In Colorado, Candrian said, facilities can skirt policies by citing other reasons for refusal or arguing that their sites don’t qualify as housing.
“These situations can be tricky, because technically nursing homes are not required to admit anyone and can refuse admission for a variety of reasons,” Candrian said. “However, discrimination based on gender identity is not one of those reasons.”
Last month in Maine, GLBTQ Legal Advocates & Defenders (GLAD) filed what the agency said is the first discrimination claim against a senior facility by a transgender individual.
In that case, a 78-year-old woman identified only as Jane Doe was recommended for placement at Sunrise Assisted Living in Jonesport, Maine, after being hospitalized in spring 2021. The suit claims the facility initially told a social worker that rooms were available but, as in Oakley’s case, balked after learning that the transgender woman wanted a female roommate.
GLAD attorney Ben Klein said his client “simply wants to be treated with dignity, compassion and understanding as she ages, like anyone else.”
‘Not just waving a rainbow flag’
In Washington state, the Goldsen Institute recently launched a skill-based training program called Safe Home to help long-term care facilities instill LGBT-affirming climates, especially for transgender adults from underserved racial and ethnic backgrounds. The program is funded by the state’s Department of Social and Health Services and the National Centers for Medicare and Medicaid Services.
“A lot of what’s happening is in part lack of awareness,” said Goldsen, director of the institute, which focuses on wellness in underserved communities. “A lot of older LGBT adults don’t know what their rights are, and a lot of staff don’t have the skills to provide quality and inclusive care for them.”
SAGE, meanwhile, is conducting a national campaign to identify facilities seeking to be more inclusive, with plans to help them craft core policies and practices toward that cause. Since late June, Wayland said, the organization’s list of interested facilities had quadrupled to about 500.
“We have benchmarks in place that we ask organizations to meet,” Wayland said. “It’s not just waving a rainbow flag, but really making that commitment to equity.”
In Grand Junction, Oakley said she decided to come forward to help other transgender people avoid her experience. While she misses her old community, she’s satisfied with the care she receives at Eagle Ridge of Grand Valley, which gave her a private room.
In September, gangrene claimed her right toes. With one left toe already gone and another surgery too risky, Oakley lives day to day, passing the time with Diet Coke and cigarettes. Eagle Ridge staffers take good care of her, she said.
“They accept me at face value as Lisa,” she said. “I’m just one of the girls.”
This article originally appeared on USA TODAY: Elder care for transgender Americans is growing civil rights issue