The Long-Term Care Equality Index: Here's What You Need To Know
The index will be a resource for LGBTQ+ older adults and caregivers
LGBTQ+ older adults may have an easier time finding long-term care facilities that are welcoming and inclusive, and providers will have a benchmark to see how well they're doing when a report this spring measures best practices across the country.
SAGE, a group that advocates for LGBTQ+ seniors and the Human Rights Campaign Foundation are compiling an updated version of their Long-Term Care Equality Index (LEI).
The index, designed to be a resource for LGBTQ+ older adults and caregivers, also aims to encourage providers such as assisted living centers and hospice communities to be more inclusive. The first report was released in 2021.
"These are situations where people are turning to a network of care to find a place to live and be supported."
There have been "several situations" in the past five or six years where people were denied entrance into long-term care communities because of their sexual orientation or gender identity, or faced harassment for those reasons, said Sherrill Wayland, director of special initiatives for SAGE. "It just speaks to the ongoing stigma and discrimination that is happening," she said in an interview.
"These are situations where people are turning to a network of care to find a place to live and be supported," Wayland said. "It's really harmful to a person's emotional well-being and possibly their health as well."
While there have been high-profile lawsuits in which people have been turned away from facilities because of gender or sexual identity, the "vast majority" of incidents never make it to court, said Karen Loewy, senior counsel and director of constitutional law practice for Lambda Legal, which represents the legal interests of LGBTQ+ and HIV-positive people.
When discrimination poses a barrier, most folks will move on to find other options rather than taking legal steps to address it.
"When a person is in need of long-term care, the immediate priority is to connect them to that care," Loewy said in an email interview. "When discrimination poses a barrier, most folks will simply move on to find other options rather than taking legal steps to address it."
"A lot of elders are not going into [assisted living facilities] because they're afraid," said Jacqueline Boyd, founder of LGBTQ+ care navigator The Care Plan. In addition, Boyd told journalists at The Gerontological Society of America's annual meeting many "have not felt trusting of health care or government or aging institutions" because of a long history of discriminatory policies.
Wayland said some facilities want to be recognized as welcoming and share best practices with others. "We have a number of long-term care providers who want to provide quality care and support to LGBTQ+ older adults," she said.
"Over time, we'll continue to see this field expand and grow as people see how it's possible to be LGBTQ+ inclusive." The LEI will help communities improve their policies and practices, she added.
What's An Inclusive Facility?
The first step for facility leaders who want to participate in the index is to sign a pledge to adopt inclusive policies and practices. Facilities take part in a biennial survey, the results of which are published in a report the following year.
Skilled nursing facilities, assisted living and independent living communities, memory care facilities, continuing care retirement communities, and hospices are all eligible to participate, as are affordable senior housing communities. The "pioneering participants" in the benchmarking project represented 184 facilities, according to the 2021 report.
How to tell an inclusive community from one that might be problematic? Wayland suggests checking whether the facility has a non-discrimination policy for residents and families, whether it conducts outreach, and consider any inclusive services it provides.
"Many LGBTQ older adults have faced significant discrimination at the hands of health care providers and medical institutions over the course of their lives."
If no suitable facility exists in a community, she said, it's worth approaching management about adopting inclusive practices. "We don't necessarily think about going house-hunting for long-term care, but I think it is part of the planning that we can start to do, especially at that community level," she explained.
A lack of acceptance isn't limited to long-term care facilities. According to advocates, discrimination can be found throughout the health care system, who say it's wise to prepare early for potential health needs.
"Many LGBTQ older adults have faced significant discrimination at the hands of health care providers and medical institutions throughout their lives and will often avoid seeking care out of fear of it recurring," Loewy said. "Given the increased need to access health care as we age, this can lead to poorer health outcomes than those of their non-LGBTQ counterparts."
Boyd said that an inclusive culture means ensuring staffers from the front desk to the doctor's office treat clients respectfully. "It's not just about what you have on your website or how you're designing your program materials," she said. "It's also about who you are hiring and how you are building long-standing relationships."
"Just because times are changing and it feels like things are more open and inclusive doesn't mean it reaches the people on the ground," Boyd said.
Planning For The Future
"One of the biggest concerns among LGBTQ+ older adults is just thinking about who will be there to care for us as we age," said Wayland. "We're two times more likely to live alone and four times less likely to have children" than non-LGBTQ+ peers.
While that may change down the road, "right now, many older adults either didn't have children or may have become estranged from their families," she added.
"It's really important that we select folks that we trust."
That often means relying on "families of choice," which can become problematic if same-age friends who support each other experience health declines simultaneously, Wayland said. "That can leave a fragile support network."
According to Wayland, it is never too early to start planning. "It is essential that all people complete the paperwork for durable powers of attorney in health care directives, but it can become increasingly important for LGBTQ+ people," she said. That's especially true in states that don't recognize spouses as next of kin.
"Having that durable power of attorney completed is going to be critical," Wayland said. Without it, health care providers must turn to family members for care decisions.
Wayland said those who aren't in committed relationships and don't want families of origin making decisions for them should talk to friends about taking on the responsibility. And it will be a responsibility involving decisions about treatment, care, and finances: "It's really important that we select folks that we trust," she said.
Loewy advises consulting with an attorney to draft legal documents, as requirements vary by state.
Transgender people face particular challenges, according to Boyd, who said she'd helped about 20 people through surgery during the transition process.
"Every single person I have supported through gender-affirming surgery, someone at some point in their journey has misgendered them, asked inappropriate questions, or treated them as a novelty," she said.
"I don't have a success story with my trans clients seeking surgery," she added. "That has not happened in my experience."
"Plan early, plan often" is Boyd's advice for aging singles. "It is never too early to start talking with your friends and family support system about your wishes. It's never too early to get your advance directives in place."
"Aging goes better with a plan," said Boyd. "Find a good medical team that's going to advocate for you. Find a nursing home. Identify caregiving agencies in your area and have a top three. Price out home health, talk to financial advisers, have a Medicaid spend-down plan, and apply for VA benefits. Most of us are doing that from a hospital bed or a state of crisis."
For those thrown into caregiver roles, Boyd advises reaching out to local agencies on aging for help. "You're just not going to get up to speed on everything," she said. "It really, truly is a job."
This article was written with the support of a journalism fellowship from The Gerontological Society of America, The Journalists Network on Generations, and The Commonwealth Fund.