LGBT Seniors, Invisible No More
Discrimination and legal inequalities take toll on health and health care
By Barbara Moran BU Today, May 25 2012
Robert B Hudson,
Boston University School of Social Work
Photo courtesy of the Boston University School of Social Work
Robert B. Hudson says that some members of the health care community "have treated LGBT people with condescension, and that in turn has often led people to put off preventive services."
In 2009, according to the U.S. Administration on Aging, about one in eight Americans was over age 65. That adds up to 39.6 million people, or almost 13 percent of the U.S population. By 2030, there will be about 72.1 million in that age group, or about 19 percent of the population.
While many studies have been done on America’s aging population, little research has focused on a group facing special issues as they age: the lesbian, gay, bisexual, and transgender (LGBT) community. Today’s LGBT elders have lived through decades of discrimination, which, it turns out, has huge repercussions as they age. Yet LGBT seniors have been largely ignored in policy on aging.
To help address this oversight, Robert B. Hudson, a School of Social Work professor of social policy and managing editor of the journal Public Policy and Aging Report, devoted an issue to the topic of LGBT seniors, with articles written by a range of researchers, service providers, and advocates involved with LGBT policy concerns. According to Hudson, the issue received more positive feedback “than just about anything else we’ve done.”
In his introduction, he writes, “These individuals have remained nearly invisible to the community of advocates, researchers, practitioners, administrators, and politicians who associate themselves with the modern aging enterprise.”
BU Today recently spoke with Hudson about the insights gained from the project and what steps need to be taken to help aging members of the LGBT community.
BU Today: Why did you focus an issue of Public Policy and Aging Report on the LGBT community?
Hudson: One thing we’re always trying to do is highlight under-recognized issues, and this is one that really has to be near the top of the list. There is simply not much of a literature devoted to older LGBT people. There is a whole world of aging research and aging agencies that provide a range of benefits to older people, and there is a separate series of agencies and research that address the LGBT population. But they often don’t come together.
Why do you think that is?
Well, as a political scientist, I see it centrally rooted in bureaucratic behavior. The aging agencies are organized around classic aging-related issues like nutrition, social services, and legal services. The LGBT community has never had the same level of attention.
So what’s been the result of that gap?
Massive under service. When you look at the literature, LGBT access to health care is suboptimal. And that’s for two reasons: one is that some members of the health care community have treated LGBT people with condescension, and that in turn has often led people to put off preventive services. More broadly, LGBT individuals are often denied protections such as survivorship, visitation rights, and living wills, because the legal system does not recognize their living arrangements.
What health issues other than access to health care are specific to LGBT seniors?
The Report notes higher levels of smoking, drinking, and rates of depression. The mental health issues are the ones that stand out, and I think it’s something that the larger population does not appreciate. The stressors around discrimination in those communities have been so high for so long that substance abuse issues are much more widespread than the larger public thinks. People ought to know that discrimination has consequences.
The other issue to be mentioned is HIV-AIDS. And again, something that is underrecognized is that people who are HIV-positive are getting older, thanks to drugs that are turning HIV-AIDS into a chronic illness rather than a death sentence. But it is also true that people are contracting AIDS over age 55 at somewhat higher rates than before.
That’s the group you’d think has been the most indoctrinated about safe sex practices.
Indoctrinated, yes, but on the other hand, I think it’s something about aging. I think some people may say, “We’re old, we probably can’t get it.” But in fact, as you get older, the body becomes more fragile, and it may make transmission more likely.
Is there also a lack of safe-sex education, most of which seems targeted at young people, for older adults?
I think that has been the case. A lot of the public health initiatives within the LGBT community are aimed implicitly—if not explicitly—at younger people. The classic imagery we’ve had of older people in general is relevant here; they’re frail and alone or cut off in nursing homes, so they tend to get forgotten and excluded from all sorts of helpful interventions. And then members of the aging community, either through lack of interest—or in some cases, discrimination—may not want to engage with the older gay population. And so older LGBT folks really do fall between the cracks.
LGBT seniors lived through decades of discrimination, with homosexuality a crime or deemed a mental illness. The Report says 82 percent have been victimized at least once. With homosexuality so much more accepted now, it’s hard to realize what they went through.
Well, for somebody my age it’s not hard to remember. I mean, you could get in all sorts of serious trouble by identifying as gay or being seen as gay—bullying, violence, employment discrimination, health care, the whole gamut. I think most people now don’t recognize how tough it was for LGBT people to grow up in the world they did. And if you listen to today’s political debate, there are candidates out there who are inferring things about certain populations—including this one—that are pretty nasty.
What are the major impacts on seniors of coming of age with that level of hostility?
Certainly there are impacts in mental health issues, but also in economic issues. If you were discriminated against at age 20, 30, and 40, trying to get a decent job, trying to get promoted, trying not to get fired, hoping to be invited to the company family picnic, needing to go out on the golf course with the guys where the deals are being made, and they shun you because they suspect you’re not one of them—there are huge career ramifications.
So it really is a lifelong thing. In aging we talk about “cumulative advantage” and “cumulative disadvantage.” If you went to Andover and Harvard when you were younger, you have a better train ride than somebody who didn’t. And in this case, to have been knocked off career and health care and other rails early on by reason of discrimination, a trajectory that might have gone quite high will instead be flat. And in some ways it gets worse in old age. The passage of time amplifies the discriminations you’ve encountered over the course of 30 to 40 years.
The Report says LGBT seniors are twice as likely to live alone as heterosexual seniors, and four times more likely to have no children. How does this affect their support network?
It’s a huge issue. In the case of chronic illness, something like 80 percent of all care is provided by so-called informal supports—mainly family, notably wives, daughters, and daughters-in-law. This is a population that has much lower marriage rates and somewhat higher levels of disaffection from their biological families due to their orientation. There are fewer children, fewer spouses, and the extended family of aunts, uncles, nieces, and nephews may also be thinner. That is compensated for in part by friends, but the lack of family-based informal supports is a concern in this community.
The LGBT community seems to have exceptionally strong social networks, for just those reasons. But in this regard that doesn’t seem to compensate enough. Do you think this will change for the next generation of seniors?
I think over time, with greater acceptance of these communities, yes it will get better. But it’s going to be a long process. It’s interesting the extent to which same-sex marriage has taken hold in many parts of the country, which certainly wasn’t the case 20 years ago. But it’s going to be a very long process.
With gay marriage gaining acceptance and many more gay couples having or adopting children, is it likely their support networks will be strengthened?
I think that’s right, but I think it will vary a lot geographically. There are still a number of states where gays and lesbians cannot adopt children.
To Read the full Transcript of this article click on the following link.
Announcing a new LGBT Bereavement group in the Boston area.
In an effort to accommodate the demand for a local LGBT Bereavement Group, we have added one additional group that will meet in Boston on Wednesday evenings from 6pm to 7:30pm. The group is scheduled to start May 16th and run through June 27th. This is a free group for all ages.
If you know of anyone who is struggling with the loss of a friend, parent, partner/spouse or other loved one, please forward this email.
To register for the group please call Bob Linscott at (617) 477-6610.
BOSTON, April 10, 2013—Yesterday, MassEquality and the LGBT Aging Project called on lawmakers to create an LGBT Elder Commission to study and recommend ways to meet the unique needs of LGBT elders. The Joint Committee on Public Health will hear testimony about the need for a Commission at 1pm today at the Statehouse.
“Last year, the Patrick Administration issued a directive to elder service agencies in Massachusetts requiring them to do targeted outreach to LGBT elders. We know that many of these elders are reluctant to come out to caregivers and they frequently go without help, even when sick, rather than turn to aging service providers for assistance,” said MassEquality Executive Director Kara Suffredini. “Now we would like lawmakers to take the next step and create this Commission that will serve to further identify ways we can meet the needs of this vulnerable population.”
““Despite having an excellent elder care system in Massachusetts, we frequently encounter providers who claim they don’t have any LGBT constituents,” said LGBT Aging Project Executive Director Lisa Krinsky. “There is a great need for this Commission so we can learn more about this invisible population and their unique experiences and needs in order to ensure that LGBT elders feel safe and comfortable.”
Multiple surveys distributed by SAGE (Services and Advocacy for GLBT Elders), the National Gay and Lesbian Task Force, and the LGBT Aging Project have shown that LGBT elders have a great need for services to help them to continue living independently as they age, but that they are also unlikely to request such services:
Approximately 3.8-7.6% of the total elder population is LGBT and this is expected to double by 2030 as the baby boomers, the first generation of post-Stonewall, openly LGBT older adults continues to age. (“Outing Age: Public Policy Issues Affecting Lesbian, Gay, Bisexual and Transgender Elders,” National Gay and Lesbian Task Force, 2010.)
According to the recently released report, “Disparities and Resilience among Lesbian, Gay, Bisexual and Transgender Older Adults” from the National LGBT Health and Aging Center, more than 20% do not disclose their sexual orientation or gender identity to their physician. Also, 68% of those surveyed reported experienced verbal harassment and 43% experienced physical violence.
Elder service agencies that had offered or funded LGBT training for their staff were three times more likely to have received a request to assist a transgender person and twice as likely to have received a request to help an LGB older adult in the previous year.(“Ready to Serve? The Aging Network and LGB and T Older Adults,” SAGE, National Gay and Lesbian Task Force, 2010.)
Only 19% of LGBTs have tried to have any contact with their local senior center. (Robert Behney, “The Aging Network’s Response to Gay and Lesbian Issues,” Outward newsletter, the Lesbian and Gay Aging Issues Network of the American Society on Aging, Winter 1994.)
MassEquality is the leading statewide grassroots advocacy organization working to ensure that everyone across Massachusetts can thrive from cradle to grave without discrimination and oppression based on sexual orientation, gender identity, or gender expression. MassEquality does this by partnering across issues, identities and communities to build a broad, inclusive and politically powerful movement that changes hearts and minds and achieves policy and electoral victories.
Challenges Facing LGBT elders
Lesbian, gay, bisexual and transgender (LGBT) face a number of particular concerns as they age.
They often do not access adequate health care, affordable housing or other social services that they need due to institutionalized heterosexism.
Existing regulations and proposed policy changes in programs like Social Security or Medicare, which impact millions of LGBT elders, are discussed without a LGBT perspective engaging the debate.
Federal programs designed to assist elderly Americans can be ineffective or irrelevant for LGBT elders. Several studies document widespread homophobia among those entrusted with the care of America's seniorS.
Most LGBT elders do not avail themselves of services on which other seniors thrive. Many retreat back into the closet, reinforcing isolation. Several federal programs and laws blatantly treat same-sex couples differently from married heterosexual couples. For example:
Social Security pays survivor benefits to widows and widowers but not to the surviving same-sex life partner of someone who dies. This may cost LGBT elders $124 million a year in unaccessed benefits.
Married spouses are eligible for Social Security spousal benefits, which can allow them to earn half their spouse's Social Security benefit if it is larger than their own Social Security benefit. Unmarried partners in lifelong relationships are not eligible for spousal benefits.
Medicaid regulations protect the assets and homes of married spouses when the other spouse enters a nursing home or long-term care facility; no such protections are offered to same-sex partners.
Tax laws and other regulations of 401(k)s and pensions discriminate against same-sex partners, costing the surviving partner in a same-sex relationship tens of thousands of dollars a year, and possibly more than $1 million during the course of a lifetime.
Even the most basic rights such as hospital visitation or the right to die in the same nursing home are regularly denied same-sex partners.
Many LGBT elders experience social isolation and ageism within the LGBT community itself.
These issues, often compounded by racism and other kinds of discrimination, demand the attention of policymakers, service providers and activists working on behalf of, and with, the elderly. As LGBT people grow older, they enter a world of services that may not be familiar with LGBT people. Some activists have created LGBT-specific service organizations for the aged, including Services and Advocacy for Gay, Lesbian, Bisexual & Transgender Elders (SAGE), Gay & Lesbian Outreach to Elders and Pride Senior Network. These types of programs are not available in all parts of the country and cannot provide all the services needed. This is particularly true in rural areas.
A number of problems faced by LGBT elders also stem from the fact that they often do not have the same family support systems as heterosexual people. LGBT elders are among the most invisible of all Americans. Little is known about LGBT elders because of the widespread failure of governmental and academic researchers to include questions about sexual orientation and gender identity in their studies of the aged. Legal and policy frameworks which have traditionally excluded LGBT people engender social and economic consequences which deny LGBT elders access to financial resources and community support networks.
HIV/AIDS is increasing in the Older Generation: One-quarter of all HIV/AIDS patients are over 50.
The Centers for Disease Control and Prevention (CDC) recently announced that the number of olders who are living with HIV/AIDS is increasing. At present, over one-quarter of all HIV/AIDS patients are over 50. Yale Medical School experts project that by 2017, 50% of all people in the U.S. living with HIV will be over 50. According to last year’s White House AIDS and Aging meeting, "Older age is not a safety net that protects people from getting HIV. Many issues surrounding HIV among older adults will only increase as our country faces the continuing graying of our nation's HIV epidemic."
Two trends are behind this increase. First, the development of more effective HIV drug therapies in the 1990s has allowed many patients who contracted the virus decades ago to survive and thrive into their older years. Many of these patients are managing the disease successfully, though they face health challenges related to the disease and side effects of treatment.
But new cases of HIV/AIDS are also on the rise in our older population. What factors contribute to this increase?
"It can't happen to me"
Many people believe the stereotype that only young people need to worry about HIV/AIDS. But the truth is, olders are also at risk. Today’s higher divorce rates, changing attitudes about sexuality and older adults, and the use of Viagra and similar drugs mean that olders are now more likely than ever to be exposed to the virus. When they are exposed, they are more likely to become infected, for several reasons:
•As we age, our immune system is less able to fight off infection.
•Underlying health conditions can make us more likely to contract communicable diseases.
•Changes to the skin make it easier for the virus to enter the bloodstream.
Despite this higher risk of contracting the virus, olders are least likely to understand the risks, take precautions against being exposed, get tested for the virus, or ask that a partner be tested. They often find it embarrassing to bring up the subject with their healthcare providers, not wanting to admit to at-risk behavior, and fearing the stigma of the disease. Many doctors subscribe to the fiction that olders aren't sexually active and fail to bring up the subject. The U.S. Administration on Aging calls olders "an invisible at-risk population."
HIV/AIDS may be overlooked in the older patient. It can be years before any symptoms appear, and the first signs can be minor. AIDS symptoms can mimic other age-related conditions. For example, the most common type of pneumonia in AIDS patients can be mistaken for congestive heart failure; HIV-related dementia may be misdiagnosed as Alzheimer's or Parkinson's; the fatigue and weight loss caused by AIDS might be interpreted as just "normal aging." But early diagnosis is vital so that treatment can begin as soon as possible.
Testing is easy
Olders can ask their healthcare provider for an easy, quick HIV/AIDS test. Local hospitals and health centers also offer the test. In most states the results are private, and the test can be given anonymously. To find HIV testing near you, visit the AIDS.gov website or the National HIV and STD Testing Resources test location finder. Medicare covers one HIV screening per year. Home test kits are also available. Only one home test is currently approved by the FDA (you can read about this test here).
Aging with HIV
Thanks to improved medical treatment, HIV-positive people can live well into their older years. However, living with the virus complicates the management of other diseases that are common as we grow older. Some conditions, such as heart disease, cancer, dementia and kidney disease, are likely to develop earlier in those with the virus, due to the effects of the virus and side effects of the powerful drugs used to keep it under control. HIV and the drug therapies that treat it can also worsen conditions such as diabetes, osteoporosis, arthritis and hypertension.
The social and financial toll is also high. Olders who are living with HIV face high medical bills. Many feel stigmatized and isolated, raising the risk of depression. Family caregiving is complicated by the need for safety precautions and the complexity of the older's medical regimen.
And elders who received the diagnosis back in the 1980s and 1990s may have failed to save for retirement, not anticipating that they would live to see 65 and beyond. It is important to learn about special Medicare, Medicaid and Social Security benefits for people with HIV/AIDS.
We can't afford to allow embarrassment to stand in the way of informing olders about the risks. And we can't allow the stigma of the disease to stand in the way of providing compassionate, competent care for olders who are living with HIV/AIDS. Healthcare organizations that serve olders are urging older adults, their families and professional caregivers to educate themselves about the prevention and treatment of HIV in olders. Here are some good resources:
The AIDS Institute sponsors National HIV/AIDS & Aging Awareness Day and promotes action for social change through public policy research, advocacy and education. This year's theme is "Aging is a part of life; HIV doesn't have to be."
The Centers for Disease Control and Prevention (CDC) offers information about HIV/AIDS in people 50+, including information about protecting older adults from getting the virus and other consumer resources.
The Act Against AIDS website offers consumer information and an HIV test finder.
Growing Older with the Epidemic: HIV and Aging is a comprehensive online booklet from the Gay Men’s Health Crisis.
See AIDS: 30 Years Later, which recently appeared in the AARP Magazine, for portraits of people over 50 who are living with the disease.
LGBT AGING PROJECT JOINS FENWAY HEALTH
The LGBT Aging Project, New England's premier organization for cultural competency training, programs and advocacy for LGBT (lesbian, gay, bisexual and transgender) older adults, will become an affiliate of Fenway Health effective July 1, 2013. The LGBT Aging Project will become part of Fenway's research, education and policy division, The Fenway Institute. This new affiliation will reinforce the commitment of both the LGBT Aging Project and Fenway Health to the growing LGBT older adult community.
"The LGBT Aging Project will maintain its mission, identity and staff with the Fenway Institute as our new home, "said Lisa Krinsky, Director of the LGBT Aging Project. "We are excited to join the Fenway family, and to grow our programs to positively impact the lives of larger numbers of LGBT older adults and caregivers. We are equally excited to help Fenway expand their work in LGBT aging."
This affiliation will tightly integrate community-based services, training and advocacy for LGBT older adults with research relevant to the aging LGBT population and access to health care. The resulting synergy will increase visibility for LGBT older adults and their unique social service and health care needs. As part of The Fenway Institute, the LGBT Aging Project will continue to build upon its successes in providing training, capacity-building, and community-based services and collaborate with Fenway faculty and staff to conduct critical research on the LGBT older adult community. This will help sharpen training, outreach and educational efforts at both organizations.
"Fenway is extremely excited by this partnership. As more members of our community reach their 50s, 60s, 70s and beyond, care and services for LGBT older adults are going to be increasingly important," said Stephen L. Boswell, MD, Fenway Health President and CEO. "We look forward to working with the staff of the LGBT Aging Project on growing their programs and tapping into their expertise to help Fenway better serve our elders."
Founded in 2001 by a group of advocates from both the aging service network and the LGBT community, the LGBT Aging Project is dedicated to ensuring that lesbian, gay, bisexual and transgender older adults have equal access to the life-prolonging benefits, protections, services and institutions that their heterosexual neighbors take for granted. Through LGBT cultural competency training for mainstream elder service providers, community building for LGBT older adults themselves, and civic leadership, the LGBT Aging Project ensures that LGBT older adults can age with the dignity and respect they deserve.
For more than forty years, Fenway Health has been working to make life healthier for the people in our neighborhood, the LGBT community, people living with HIV/AIDS and the broader population. The Fenway Institute at Fenway Health is an interdisciplinary center for research, training, education and policy development focusing on national and international health issues. Fenway's Sidney Borum Jr. Health Center cares for youth and young adults ages 12 to 29 who may not feel comfortable going anywhere else, including those who are LGBT or just figuring things out; homeless or living on the streets; struggling with substance use or abuse; sex workers; or living with HIV/AIDS.
CONTACT: Lisa Krinsky, LGBT Aging Project
May 15, 2013 617.477.6607
Christopher Viveiros, Fenway Health
"Gen Silent" a powerful documentary about LGBT elders fearing abuse in nursing homes, assisted living facilities and other institutional settings.
The film shares the lives of LGBT people in the Boston area.
The documentary calls attention to hostility faced by aging members of the LGBT community that is so pervasive, director Stu Maddox calls it "an epidemic."
Gay, lesbian, bisexual or trans-gender seniors are so afraid of discrimination, or worse, in long- term care that many go back into the closet.
“Unlike any previous LGBT film about aging," says Maddox, "Gen Silent discovers how oppression in the years before Stonewall now leaves many elders not just afraid but dangerously isolated,”
“Many of our greatest generation are dying prematurely because they don’t ask for help and have too few people in their lives to keep an eye on them.”
Gen Silent brings these issues into the open for the first time. The film shows the wide range in quality of paid caregivers --from those who are specifically trained to make LGBT seniors feel safe, to the other end of the spectrum, where LGBT elders face discrimination, neglect or abuse.
LINKS TO RESOURCES FOR GLBT ELDERS AND CAREGIVERS
Kathleen Sebelius, Secretary of Health and Human Services in the Obama Administration (HHS), announced in February 2010 that Services & Advocacy for GLBT Elders (SAGE) had been awarded a historic grant from HHS to establish the country's first-ever national resource center on LGBT aging. "With the full support of the current Administration, we now recognize that LGBT older adults also represent a community with unique needs that must be addressed.”
AARP, the nation's largest and most powerful lobby for older Americans, has added an online home for the lesbian, gay, bisexual and trans-gender (LGBT) community. This section of their web site is known as AARP's Prism Network. It's designed to spotlight news, personal finance, relationships, travel and other topics of concern to older gay Americans, their family and friends. It also provides information about AARP’s positions and advocacy efforts in this arena.
When you need help to manage the care of a frail elder call
Our experienced staff of professionals can ease the stressful processof navigating the confusing network of elder
service options by helping caregivers of frail elders to make informed eldercare decisions.
What Happens to LGBT Americans When They Get Old?
By Mark Miller
CHICAGO | Thu Nov 8, 2012 4:31pm EST
CHICAGO (Reuters) - Gay rights took a big stride forward in this week's elections, with voters in four states affirming the right of same-sex couples to marry. But here's an issue in the LGBT community that continues to fly under the radar: what happens to LGBT Americans when they get old?
"Our community has been focused for years on other issues, like AIDS/HIV, marriage equality and bullying," says Mark Segal, a well-known advocate in the LGBT community and founder of the Philadelphia Gay News. "But we've never developed a system for LGBT seniors, especially those who are low income and are very endangered."
Housing is one of the most important emerging retirement issues for older LGBT Americans. Along with the nation's broader age wave, the number of LGBT adults over age 65 will total four million by 2030, according to Services and Advocacy for LGBT Elders (SAGE), an advocacy organization for LGBT older adults. Research shows LGBT seniors are more likely to be single, without children or not have biological family members on whom they can rely for support as they age.
That means they will need the support of senior living facilities ranging from independent living quarters to assisted living and nursing home care. But mainstream retirement housing for this community has been problematic.
A survey of LGBT seniors who have lived in long-term care facilities, and their family members, released last year by a coalition of LGBT advocacy groups, revealed that most LGBT seniors aren't comfortable discussing their sexual orientation with staff members of these facilities. It also found disturbing levels of discrimination by staff members, including abuse and neglect or isolation from other residents.
"Many LGBT older people feel that they must hide their sexual identities if they move to a retirement home, and LGBT elders often face discrimination from aging care providers in places where they are most vulnerable, such as assisted living facilities or nursing homes." says Michael Adams, executive director of SAGE.
"Welcoming and affordable housing is incredibly important to LGBT older people, because a home should be not only a physical space where they live, but also a place of personal affirmation, community and safety," he adds.
The situation is gradually improving. The federal government is focusing on policies aimed at encouraging inclusion by senior housing communities. The U.S. Department of Health and Human Services is preparing video training aimed at increasing cultural sensitivity of staff at long-term care facilities, and the Department of Housing and Urban Development (HUD) earlier this year unveiled new rules explicitly prohibiting discrimination based on sexual orientation or gender identity in housing that receives HUD funding.
Meanwhile, some LGBT advocates are taking steps to develop senior housing specifically targeting the needs of the gay community.
One of those is Segal, a well-known advocate in the LGBT community whose involvement in the gay rights movement dates back to the 1969 Stonewall riots in New York City. He's also the founder and publisher of the Philadelphia Gay News, and regarded as one of the founders of the nation's gay press.
Segal this week will break ground in Philadelphia on a housing complex for low-income LGBT seniors. While other complexes exists - such as Triangle Square in Los Angeles - this is the first of its kind in the heart of an urban gay neighborhood.
The six-story building will rise in the heart of the city's LGBT community - deemed by locals, the "Gayborhood," which lies within the city's hip Washington Square West neighborhood. It will offer 56 one-bedroom units, with rents ranging from $165 to $785 per month, depending on tenant income. Financing comes from a combination of low income housing grants and tax credits, including the federal Low Income Housing Tax Credit Program (LIHTC), which provides incentives for private lenders to invest in affordable rental housing.
"This will be first time our community has had an opportunity to find housing of this kind in their own community," says Segal.
Among the prospective residents is Donald Carter, 62, who suffers from arthritis and neuropathy. He now lives alone in a third-floor walk-up apartment in Philadelphia. "On bad days, it's all I can do to pull myself up those steps," he says.
Carter, a former teacher and long-time activist in the local LGBT community, has been living on Social Security disability for the past 20 years, and currently receives $740 monthly. "It's enough for me to pay the bill and have a handful of dollars left over to splurge on dinner or a movie every now and then. I've just looked at my life as a reflection of being black and gay in America," he says with a laugh. Carter's luck may change soon, at least where housing is concerned.
Similar projects also are on track to break ground in San Francisco and Chicago. If all the affordable LGBT housing on the drawing boards or under development is completed, it will total 385 units, according to SAGE.
Also, retirement communities for wealthy LGBT seniors are under development - although some have faltered during the recession and housing crash. One project that is on track is Fountaingrove Lodge in Santa Rosa, California, in the wine country north of San Francisco, which is expected to open with 70 units next year. It will provide a combination of independent living and continuing care, including care for Alzheimer's sufferers.
Carter's needs are more modest. "This project is a timely godsend for me - number one, because there will be an elevator."
(The writer is a Reuters columnist. The opinions expressed are his own.)
11/21/2011 6:54:37 AM
The headline this past August read: “Gay Caregiver Spouse Deported” and the story went on to tell of how a couple was being torn apart because of their marital status not being recognized by the United States.
While many caregiving issues are the same for heterosexual couple and lesbian, gay, bisexual, and transgender (or LGBT) couples, sometimes there are significant legal, financial and personal differences for LGBT caregivers.
“Neither of us do have any support from family,” said Ken Prag, 68, who lives with his partner, Steve Collins, in San Francisco. The couple has been together for 25 years, and prior to their meeting, Steve experienced short-term memory loss and mobility issues after a severe case of encephalitis and later contracted HIV. Steve’s sister has cut off communication and his adult son is rarely in touch, Mr. Prag said.
Since Mr. Collins is in a wheelchair, Mr. Prag said that they go to every doctor’s appointment together, and are almost always questioned about their relationship. “They ask me, ‘Why are you here?’,” he said. The fact that they are not married also complicates records access, he said.
A 2010 MetLife study titled, “Still Out, Still Aging” found that nearly two-thirds of LGBT baby boomers say they have a “chosen family,” a group of people they consider family, even though they are not legally or biologically related. It also found that a significantly higher proportion of LGBT Boomers live alone.
“Striking similarities are also found between LGBT Boomers and general population Boomers, including shared fears of aging and caregiving responsibilities,” the study noted. “Members of the general population are more likely to be in a couple/partnership, but are less likely to say they rely on close friends for advice and support.”
Such relationships can provide a wealth of emotional and physical support, but can also not be legally recognized and might lead to complications if someone in need of care cannot speak for him or herself. The Family Caregiver Alliance has two online in-depth articles outlining “Legal Issues for LGBT Caregivers” and “Special Concerns of LGBT Caregivers” along with links to various organizations around the country that can provide advice.
One article points out that in January 2011, new federal regulations took effect that allow patients at most hospitals in the United States to determine who can visit them and who can make medical decisions for them, regardless of sexual orientation.
Also, even though the federal Family and Medical Leave Act that allows heterosexuals unpaid leave from work to care for ailing family members, people who are LGBT should also check their employer’s policies and benefits. Many private companies now offer domestic partners the same benefits as legally married couples.
Already the awareness of discrimination has made the LGBT population prepare for old age and being cared for, the MetLife study found. “A higher percentage of LGBT Boomers have completed living wills, health care proxies, rights of visitation, and partnership agreements, in comparison to the general population,” authors wrote. In addition, LGBT boomers were found to have more end-of-life discussions with siblings, parents, and other relatives.
Mr. Prag is not at all surprised that there are some positives when it comes to caring for a same-sex partner at home. “The main benefit is that I am so closely bonded with his life and his thoughts,” he said. “It’s easy for me to anticipate what’s going to happen, what he needs.”
Pushing his partner in a wheelchair, Mr. Prag sees it as good exercise--even when he has to assist Mr. Collins to walk up a flight of stairs and then lift and carry the wheelchair up the stairs.
“It could be very wearing on a caregiver if someone were depressed,” Mr. Prag said. “But Steve is a naturally happy person and we make the best of every situation. We laugh a lot and his great sense of humor helps.”
Dear Bob O'Toole,
Assistant Director, LGBT Aging Project