You don’t know what you don’t know.
That’s what I learned touring over 30 assisted living homes and senior communities in recent years. Some visits were for an article I was working on or for volunteering. Others were personal; I was looking for a welcoming home for my mom.
Having written about LGBT housing for five years, I asked myself the same question when I walked through the doors of each community: Would I feel comfortable here if I was older and ready for a senior community?
The answer was always no, and not because I thought the managers and workers at those homes were bigots. I asked staff members specific questions about how each place addressed LGBT concerns and, of course, there were a few who clearly disliked the LGBT community -- you could read it on their faces. But other than a few negative reactions, I didn’t experience awkward responses or overt prejudice.
As I visited senior living communities mostly in Maryland, Virginia and Washington D.C., I was surprised to hear comments such as, “I haven’t seen any gay people here,” “No one has ever complained” and “We treat everyone the same.”
If folks in these relatively progressive communities weren’t attuned to the needs of older LGBT adults, I wondered what the reactions would be in other, less accepting parts of the country. My visits made it clear that the LGBT community had a lot of awareness raising work and training left to do across the senior living industry.
“It’s common to hear from companies who can’t see why this is an important topic,” says Tim Johnston, director of national projects for SAGE, the organization dedicated to advocacy and services for LGBT elders. “My response will often be, ‘How great that your goal is to treat everyone equally, but if you’re not aware of this group’s needs, then equal treatment might not be equitable.’ I try to get the point across that it’s important to measure people in a way that takes into account their differences.”
You Can’t Ignore the Numbers
While some senior living companies may still overlook people’s differences, the numbers won’t be ignored.
There are an estimated 3 million LGBT people over 65 in the U.S., and more than double that are expected by 2030. What's more, 3 million is very likely an underestimate. What I wrote in "Does it Get Better for LGBT Seniors?" in 2016 holds true today. Any study that tries to measure the number of LGBT people is challenged by the fact that, due to fear and the closet, some LGBT folks won’t share the truth. They can also be difficult to find, since not all surveys seek out LGBT people, something that is unlikely to improve given the current political climate. And according to SAGE, LGBT older adults are:
- Twice as likely to be single and live alone
- Four times less likely to have children
- Far more likely to have faced discrimination and social stigma
- Less likely to speak up and ask for senior services of any kind
New LGBT Research Highlights the Need for Awareness and Action
One would think that with a growing older LGBT community, concerns about long-term care and housing would shrink as senior housing providers rose to meet their needs.
But a new study from AARP on LGBT adults over 45, Maintaining Dignity: Understanding and Responding to the Challenges Facing Older LGBT Americans, shows that worries persist about long-term care and senior services.
“This study helped us see how we could make the big difference in the lives of older LGBT adults especially around long-term care, affordable housing and social isolation,” says Nii-Quartelai Quartey, an AARP senior advisor and LGBT liaison who led the survey.
According to the study, most older LGBT Americans are most concerned about three key aging-related issues:
- Having adequate family and/or social supports to rely on as they age (76 percent).
- Not having access to LGBT-specific senior services (73 percent - while 91 percent are at least somewhat interested in LGBT- welcoming housing developments for older adults).
- Long-term care (60+ percent). When considering long-term senior care facilities, the chief worries are neglect (67 percent), abuse (62 percent), limited access to services (61 percent), and verbal or physical harassment (60 percent).
In addition to those three top fears, the study showed that black and Latino LGBT adults have compound discrimination concerns about the quality of their healthcare as they age.
Perhaps most striking is that 34 percent of older LGBT adults fear being forced back “into the closet” or having to hide their identity in later life just to have access to acceptable housing. And more than half (52 percent) worry that they’ll have to hide their identities and go back in the closet in order to obtain long-term care services.
What Do Older LGBT Adults Hope For?
Pay a little attention and it will go a long way. That’s the message from older LGBT adults to long-term senior care providers and communities.
AARP’s study didn’t just focus on fears; it also asked about aspirations. It found that a majority of older LGBT adults surveyed cited some specific ways to improve patient comfort and quality of care:
- Making sure providers are specifically trained for LGBT patient need (88%).
- Creating explicit advertising promoting LGBT-friendly services (86%).
- Knowing if providers or staff are LGBT themselves (85%).
- Seeing LGBT-welcoming signs or symbols displayed onsite/in offices, online or in communication (82%).
More than anything, older LGBT adults indicated that they’re interested in senior housing options. Ninety percent of respondents said they were at least somewhat interested in that option.
Training and Advocacy Helps Allay Fears of Discrimination
AARP’s study shows that older LGBT folks’ worries about housing discrimination continue. Fortunately, so does progress.
SAGECare, the national training and consulting division of SAGE, is one organization that has made huge strides toward improving senior care for older LGBT adults.
As of June 2018, they’ve trained 34,716 people with 297 SAGECare credentialed providers in 45 states, and these numbers are growing. The organization’s LGBT trainings, both in-person and online, cover essential topics ranging from improving aging servicers for older LGBT adults to preventing anti-LGBT bias between constituents, staff and across services.
Training can help even the best intentioned senior care home staff understand LGBT issues in ways they never considered.
“You could say everyone can come to a movie night, but if some are in a wheelchair and don’t have access, then it’s not equitable,” says Johnston. “And all may be welcome at ‘Family Day,’ but if it’s geared toward a blood-relation family and the flyer shows a picture with man, woman and child, it may not feel inclusive for LGBT people. In that case, equity means there needs to be specific messaging.”
Johnston says that organizations working with SAGECare are compelled by its mission, but they’re also aware that appealing to the growing number of older LGBT older adults is a smart way to boost their business.
One of the greatest aspects of credentialing is what it does for caregivers of older LGBT adults (and LGBT caregivers, too). As part of any due diligence to make sure a senior community or provider is welcoming, family caregivers should ask questions such as:
- Have they offered LGBT training for staff?
- Do they have any LGBT staff?
- Has the senior community or provider ever worked with LGBT people?
For organizational leaders who are initially skittish or may push back from talking about LGBT issues, Johnston says it’s easy to assume the worst. But he’ll mention to them that, until they start talking about LGBT familiarity, they have no idea what kind of personal beliefs their staffs may have. A nurse, aide or other professional may have an LGBT son, daughter, mother, father, aunt, uncle or close friend who’s near and dear to them, and welcome the chance to bring that personal experience into their workplace.
Other Ways to Foster Positive Change
Quartey is hopeful that AARP’s research will raise awareness and foster change and is glad to be working with SAGE on new initiatives. He says he’s eager to see “national partners with local footprints working together even more.”
“We learn a lot from each other,” he says. “These are turbulent times we are living in and a number of traditionally marginalized communities are feeling the heat and are more inspired to do what we can to protect the most vulnerable.” That includes continuing to raise awareness, to provide supportive tools and fight against social isolation for a community that some senior care homes and providers may not know is there.
Levy also hopes for more research in this area, since that will help make the case and show the numbers. She says she’d also like to see more people asking their political leaders to create and support bipartisan efforts aimed at helping older LGBT adults. In more extreme bias cases, she recommends taking advantage of whatever legal recourses exist and filing lawsuits where possible and needed against discrimination.
In the end, perhaps the greatest positive change will come from opening more hearts and minds.
“Hopefully people will see the 76 percent number (the percentage of older LGBT adults who are concerned about having adequate family and/or social supports to rely on as they age) and it will inspire all of us to be more focused on helping folks who live on the margins,” says Quartey. “Pride season isn’t just about a march; it’s about creating safe spaces for all of us at all ages.”
Resources for Older LGBT Adults and Their Caregivers
The following resources can help both LGBT older adults and caregivers.
- The AARP Pride webpage, which houses resources and information.
- SAGECare, the training and consulting division of SAGE.
- Lambda Legal is a non-profit that has published comprehensive coverage of LGBT senior rights. Seniors who feel they’ve been denied housing because of their sexual orientation or gender identity may contact the Lambda Legal Help Desk.
- The Federal Nursing Home Reform Act created a minimum set of standards of care and rights for people living in Medicare or Medicaid-certified nursing homes, which can be downloaded here.
- National Resource Center on LGBT Aging. A technical assistance resource center aimed at improving the quality of services and supports offered to older LGBT adults.
- Family Caregiver Alliance. LGBT legal issues for caregivers.