Long-term survivors of HIV are not necessarily elderly … or disabled …or poor. They may or may not be LGBT (lesbian/gay/bisexual/transgender). Their housing needs may not include medical services.
At some point, however, just like anyone else, they may need specialized housing, including medical care.
Although probably most long-term survivors today are technically only middle-aged, many may already experience debilitating physical and financial effects of surviving HIV from a time of difficult—or no—treatments, not to mention psychological trauma. To that extent, as with other serious illnesses, there’s overlap with elder care.
If and when the need for specialized housing arises, the potential for stigma becomes perhaps more important than ever. To be more vulnerable when you need greater support is a frightening thought.
To that end, advocates are working to ensure that managed housing can be free of stigma and discrimination when serving people who are living with HIV or are LGBT, or both.
Discrimination in specialized housing communities already exists. As just one example, there’s a short video about a man forced out of an assisted living center because he has HIV. (It was produced for the Graying of AIDS project of AARP.)
With the potential for more long-term survivors of HIV needing services established for elders, LGBT or not, there’s a greater need for equal rights and treatment, and being able to reinforce them.
“Housing is always very, very high on the list for most concerns, especially in people with lower income,” said Hilary Meyer, Director of Social Enterprise & Special Projects for SAGE (Services and Advocacy for GLBT Elders). “The number one issue for our constituency is affordable housing. Having a long-term disability just compounds the issue. It limits where they can live.”
People want housing that they can afford, but some urban areas have “extraordinarily high housing costs,” she said. Limited incomes may become especially challenging when coupled with mobility and other health issues. Some places, such as walk-ups, can be dangerous.
There’s far more need for affordable housing than is available, she added, and further, because of stigma and discrimination, people may end up living in places where they don’t want to live.
To ensure that housing meets the needs of LGBT elders, the organization started SAGECare, a training program for providers of elder services, including housing and medical care. Staffs are trained to comfortably engage with LGBT elders, ask sensitive questions, be open and non-judgmental, create LGBT-inclusive programming, and learn “best practices” (a government term for services found effective based on research). The program, started earlier this year, presents varying levels of credentials to agencies trained.
What about HIV?
“We certainly have experiences with hearing stories about caregivers not understanding how to work with HIV, appalling things such as concerns with contact,” said Meyer. “There’s still very much a stigma and misinformation. Our training addresses myths and debunks them.” SAGECare providers learn to be “respectful and welcoming and inclusive,” she said. “Fear of being discriminated against is quite pervasive.”
“I would feel really uncomfortable going into a retirement village that doesn’t respect me or honor me. I wouldn’t want that,” said Tom Hunter, MA, LCSW, the Senior Care Specialist for Chicago House, an agency that provides housing and other services to people with HIV and other marginalized populations, and a gay man himself living with HIV. “I think in some cases people are going to be forced to go into a nursing home or other facility and it’s very important for the staff to be trained in cultural competence. You would think that in this day and age people would be well-educated and accustomed to having LGBT people around, but they’re not.”
As for HIV, he notes that there’s still stigma even among gay men. “I’ve experienced it myself, and I’ve heard of it happening to others,” said Hunter.
Marina Kurakin of the AIDS Legal Council of Chicago, who wrote a story on finances for this issue, said that the Americans with Disabilities Act (ADA) outlaws nursing home discrimination against people living with HIV. But it still happens, she said.
Hunter points out that people living with HIV may not disclose, just as people who are LGBT may closet themselves to avoid discrimination. “They pick and choose who they tell it to, even in the gay community, looking for support from people they can trust.” He noted that people with other health issues like diabetes or heart disease may not necessarily disclose either.
He also pointed out that senior housing built for LGBT individuals cannot discriminate against heterosexuals, an irony learned when these types of buildings began opening around the country, such as Town Hall Apartments in Chicago.
As for housing for individuals living with HIV, people want a subsidized apartment where they pay approximately 30% of their income, he said, but those are in very short supply. There may be temporary housing opportunities—lasting as long as years—that help people get back on their feet until they are able to obtain permanent housing, he said.
Chicago House and other housing agencies and services for people with HIV in the city are LGBT-friendly, while other places may not be, he said. That adds another layer of difficulty for LGBT people who are living with HIV.
“There at least has to be some cultural competency training for staff, and they really have to believe in it and follow it because those people are going into assisted living facilities, nursing homes, or retirement communities and some of them often feel afraid of being abused. I’ve heard story after story about this, how people feel either their sexuality goes back into the closet or they can’t be themselves because they’re afraid of being mistreated or ostracized,” said Hunter.
A report published two years ago by SAGE and the Equal Rights Center documented this problem, looking at housing discrimination against elderly gay couples.
Aaron Tax, Director of Federal Government Relations for SAGE, said the challenges for elderly LGBT people and people living with HIV are similar, including stigma and discrimination. For LGBT individuals, however, there appears to be a higher level of social isolation.
“This is a population that’s largely disconnected from their families of origin and often have to rely on friends, neighbors, and others who are of the same age, and as a result, that presents its own challenges,” said Tax. “They’re older or frail or having other health challenges, so who are the obvious go-to people there to help them?
“The LGBT statistics show that LGBT older adults are twice as likely to be single and four times less likely to have children than their heterosexual and cisgender counterparts,” he continued. “And day-to-day, that creates a challenge because they don’t necessarily have people around for socialization, such as family members, and for the day-to-day tasks, whether it’s health care or taking medication, getting to the doctor, chores around the house, and all those sorts of things.”
In addition, he said, LGBT elders face a much higher poverty rate than the general population, as well as having a lack of access to culturally competent services and support.
“Then there’s this whole other layer of this challenge, the stigma associated with HIV,” said Tax. “So what does this mean? This is a population that’s in greater need of services and support provided by the central government and the state governments and other agencies, yet because of stigma and the discrimination they face are much less likely to take advantage of services and support that are there to help them.”
Moreover, there are challenges and stigma associated with HIV even within LGBT services, he said, in addition to stigma associated with aging.
SAGE is working on government policies to provide national protection for elderly LGBT individuals, such as the Equality Act and a comprehensive LGBT civil rights bill that would cover discrimination in housing and all public accommodations.
It’s not all talk and policy, however. The organization is set to open two LGBT senior living buildings this year, in the Bronx and Brooklyn.
“But we also realize we can’t build our way out of this,” Tax said. “The wider housing stock has to be either affordable and/or targeted low-income, and be welcoming. And if there are any services or programs attached to that housing, it needs to be provided in a culturally competent way. That’s in part what we’re doing through our federally funded National Resource Center on LGBT Aging [lgbtagingcenter.org; the resource section includes the aforementioned video], to ensure that the services out there provided either by the LGBT community or by the aging network are culturally competent and serve the needs of LGBT older adults and those living with HIV. We’re going to continue working to try to ensure that the federal government policies on HIV and those on aging take into consideration on the one side aging and on the other side HIV, so that aging policies are HIV-inclusive and HIV policies are aging-inclusive.”
Tax noted that, “If you’re in New York City, perhaps you can get into an LGBT-targeted building, but there are plenty of people who won’t be able to get into a building like that. If you’re in rural Mississippi, perhaps you’ll never have an LGBT-targeted older adult building. You’ll want to know that if you go to a long-term care community where you live that you feel welcomed and you can be who you want to be and who you are in that setting.”
Tom Hunter echoed those comments. “People in this population will probably want to be in major cities with easy access to culturally competent, good medical care. It may be nice to get a house in the country out in Montana, but you can be very far removed from an infectious disease doctor and without a staff who understands you and accepts you.”
He thinks people may buy a unit or a building together to form their own housing and self-help community. Said another gay man, “Maybe this is why gay men have loved The Golden Girls. A shared living situation with friends sounds comforting in the face of getting older.”