HIV, Aging and LGBT people: A Metamorphosis

On April 3, 2008, my longtime friend Don (last name withheld) tested positive for HIV, the same day as his mother’s 56th birthday. He remembers the day vividly. “I had given blood to my doctor and a couple weeks later, I still hadn’t received a call. I called my doctor’s office and they said, ‘There’s an anomaly with your blood.’ I immediately freaked out and thought, ‘God, this is it.'” Don took the last appointment of the day and a few hours later received his diagnosis, along with a few referrals. He went home “to pull myself together, call my mom and wish her a happy birthday.” He wouldn’t share his HIV status with his mother for several years.

“It stopped me dead in my tracks,” he says of that day. “And even though having an HIV diagnosis isn’t the same as it was 15 or 20 years ago, I immediately saw the end. I had dreams where I would see this road that said: ‘dead end.'”

At 42, Don represents a notable demographic segment of the U.S. population living with HIV/AIDS. According to the Centers for Disease Control and Prevention (CDC), the highest rates of HIV prevalence, by age group, are among people ages 45-49 and ages 40-45—20% and 16%, respectively. As these people in their 40s and their older peers age, spurred in large part by medical advances, people age 50 and older will make up roughly 70 percent of Americans with HIV by the year 2020.

Yet aging with HIV can be especially difficult. Older adults with HIV report high levels of isolation, yet few community spaces embrace their full identities as older people, people with HIV and, in most cases, given the epidemic’s prevalence, LGBT and people of color. Additionally, medical research has found multiple health concerns related to aging with HIV—and the psychological dimensions of living with HIV, or a new diagnosis, can spur its own storms. Without a large-scale, dedicated response, the “younger” end of this older adult spectrum, including Don, will join their older peers over the next decade in entering an aging system unprepared to meet their unique needs, despite their overwhelming numbers.

*****

Don was born in 1972 in Maple Heights, Ohio, a suburb of Cleveland he describes as comprised largely of Polish and Italian people (similar to his family), and one that depleted in size over the decades as the economy worsened. He recalls a mixed childhood that included a family dynamic in which tough issues were never discussed openly and only worsened as he grew older. “We laughed and we loved each other, but there was the divorce and the fighting and the aggression that overshadowed all of it.”

Don’s first memory of HIV is from 1985, when screen legend Rock Hudson publicly disclosed he had AIDS. Don remembers his family reacting to—though not discussing—the controversy that erupted regarding a kiss Hudson had shared with his “Dynasty” co-star Linda Evans on an episode a year prior. “I remember just hearing ‘AIDS’ and they would show pictures of him, and they would show pictures of people with lesions and looking sickly. Those were the first images that were infused into my brain.”

AIDS raged through the 1980s—inciting more than 100,000 cases by the end of 1989, according to the CDC—yet Don doesn’t recall any mentions of the topic until his freshman year in college in 1990. “During student orientation, they give you information about all of the available resources on campus, and they talk about the health center, and if you get an STD, and how to get an HIV test. ‘An HIV test?’ I thought. That was the first time it registered as something that people needed to pay attention to.”

As Don matured into his gay identity throughout his 20s, he still didn’t feel at risk for HIV. “I felt like, well, I’ll just pick the right guy who looks like he’s ‘clean.’ It was a beautiful, blissful denial and ignorance that allowed me to behave like I did and not see a connection between my behaviors and the consequence of what could have been.” In fact, after his first handful of HIV tests yielded negative results, he admits it gave him license to continue having unprotected sex for a few years longer, believing himself immune from HIV and other sexually transmitted infections.

Years later, he would seroconvert and find solace in disclosing his HIV status to a select network of friends. “When you tell people, when we come out, we’re telling people not just to share information, but it’s also to better accept ourselves.” He would reconcile his relationship with his estranged biological father. He strengthened ties with his sister and brother, the two remaining next of kin after a series of untimely family deaths over the course of a decade. And for two years, he co-facilitated an HIV support group for a local nonprofit that gave him a sense of purpose and exposed him to a multitude of motivational stories. He soon saw himself as “one little story among a greater picture.” He realized then, “Okay, we’re all in this together and we’ll figure it out.”

*****

But are we united on this issue—and will we figure it out? My experience in lesbian, gay, bisexual, transgender and queer (LGBTQ) rights shows that few organizations prioritize HIV/AIDS, an omission that’s more glaring in the aging and long-term field.  More broadly, this topic seems virtually absent in the media, in government, and across progressive activist circles and community spaces. Governments rarely support this population, and too few aging and health providers are versed in the clinical and social support needs of people aging with HIV.

At SAGE, we frequently encounter older people with HIV who are severely isolated, in poor health and without proper financial means. Some have lived with HIV for years; others have been recently diagnosed, often with both HIV and AIDS; and many probably don’t know they have HIV. Recently I asked a case manager who runs an HIV support group in New York City about the group’s willingness to discuss end-of-life planning and set in place the necessary documents. He replied that people who have long fought to survive avoid discussing death for fear of jinxing their good luck. And what do we make of older people who tested positive in the 1980s and early 1990s, assumed they would pass away, spent their savings and then miraculously survived—impoverished and jarred by their newfound survival?

A May 2014 policy report offers large-scale recommendations. Federal agencies should fund HIV prevention programs that are aimed at older people who might require unique messaging rooted in generational differences. The CDC should encourage HIV testing among people older than 65 and promote their overall testing guidelines among all health providers. All states should adopt Medicaid expansion under the Affordable Care Act to ensure that more low-income people can access proper care—a disparity that disproportionately affects people of color largely concentrated in states that have opted out of Medicaid expansion. Federal agencies should fund more research on what it means to age with HIV, especially among LGBT people and people of color, the hardest hit groups. And the U.S. Department of Health and Human Services should issue treatment guidelines for the clinical care of older people with HIV, many of whom have increased comorbidities as early as age 50.

Six years after his diagnosis, Don grapples with remaining optimistic in a time of grief. “I’m probably healthier than I have ever been, yet I’m continually reevaluating my life and purpose, especially with the death of my family. You can’t help but think, ‘What’s my fate?” He nevertheless sees the fact that he was diagnosed on his mother’s birthday (who passed away from cancer in December 2013) as symbolic motivation. “It’s her birthday. But it also became a different sort of birth process for me because it was me seeing my life and myself in a new way for the first time.”

Don now seeks to create a simple life with clear priorities, minimize his material belongings, and focus his time on people who matter, such as his partner of three years. And when he ponders how he wants to live his later years, he replies: “Enjoying the day. Not worrying about what’s going to happen five or 10 years from now, or a year from now. I want to enjoy this moment and take it all in for what it is.”

*****

I remember the day Don shared his HIV status with me. He brought me into his kitchen and told me in the clearest of terms, a mix of bluntness and vulnerability in his tone—everything I know about his personality. I measured my reaction, asked questions and downplayed the severity and stigma, a response I would want in a reverse scenario. We both agreed HIV was a different illness than what we read and witnessed from the 1980s and 1990s. We had a dinner party to attend that evening and before we left the house, I escaped to his upstairs bathroom, shut the door and wept. Outside, the streets of downtown Denver were lined with delegates and supporters for the 2008 Democratic convention, celebrating the possibility of a new era. As we drove through this tide of hopefulness, I sat still next to my rattled friend. I thought about life’s inevitabilities, what awaits and changes us, and how often we as LGBTQ people have had to defend our bodies from the forces that routinely assault us. A new era, yes. A different narrative, no.

Is this the dilemma that rests at the heart of sexual liberation for LGBTQ people? We crave fulfilling sexual lives, autonomy over our bodies, new norms, and the freedom to express ourselves as we see fit, without judgment, discrimination or criminalization. Yet we still encounter consequences, and our culture seems ill-prepared to deal with the contradictions that come with the fluidity and complexity of identity, desire and choice. And we know too well that a serious illness can be transformative or debilitating, depending on one’s resources and level of support. Life can seem so pressed and so short.

We have also been trained to critique and reform the same health care system that we must ultimately rely on. Many of us are too well-read and historically astute to blindly trust the industries and institutions that profess to protect us. Medications are conceived in laboratories governed as much by profit as by medical need. Government and private funds to nonprofits come with illogical restraints, ideological assumptions and unrealistic deliverables. So how do we live healthy, sexually liberated lives as queer people in the context of cultural repression and widespread economic exploitation? Does this explain the apathy, even aggression, against new PrEP treatment that could prevent scores of HIV infections if more people were on it? We remain rightfully dubious about the lines between altruism and marketing, prevention and “poison,” our health and their profit.

I’m inspired that Don sees the date of his diagnosis as a form of re-birth; it’s both poetic and precise. Yet Don’s inspiring metamorphosis, strength-based outlook and access to both medications and social support are not evenly shared among older people. What we need are solutions that draw from the hardship of people who struggle with the daily coping of HIV/AIDS, physically and financially, as well as from people such as Don who have survived HIV, grown wiser and in many ways, healthier.

It might be that HIV and aging, when seen as distinct concepts, are two manifestations of the same notion; your life becomes either more meaningful or more precarious depending on your state of mind and what surrounds you. Or perhaps the pervasiveness of death clarifies our identities; we anticipate our end as a means of reformulating our old selves. When I ask Don about the legacy he’d like to leave when he passes, he replies, “I want people to know that HIV influenced me because it made me look at life in a totally different way. It took me out of myself temporarily in order to get to know myself all over again.”

Follow Robert Espinoza on Twitter: www.twitter.com/EspinozaNotes

This article by Robert Espinoza originally appeared in the Huffingtonpost.com Gay Voices blog.

Robert Espinoza is Senior Director for Public Policy and Communications at Services & Advocacy for GLBT Elders (SAGE). The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.

AIDS AND AGING: A REALITY THAT DEMANDS OUR ATTENTION

Maria Eugenia Hernandez-Lane, Vice President of NHCOA

Maria Eugenia Hernandez-Lane, Vice President of NHCOA

The AID Institute’s 7th annual National HIV/AIDS and Aging Awareness Day (NHAAAD) will be observed September 18, 2014 with the theme “Aging is a part of life; HIV doesn’t have to be!” For more information about HIV/AIDS and older Americans or to become involved with the campaign, visit www.NHAAAD.org.

Among diverse communities, the stigma of HIV is a cause of shame, embarrassment, and worse of all, denial and silence. When denial and silence are present, the lack of communication and information lead to myths and misinformation. Worst of all, silence results in increased infections and is inevitably compounded by stigma, which leads to people living with HIV who are undiagnosed and therefore, untreated.

In the U.S. alone, 1 out of 6 persons is unaware s/he is HIV positive. The reality is that older Americans are just at risk of HIV infection as younger age groups are.

[Learn more HIV statistics in the United States]

In fact, adults 55 years and older represented nearly one-fifth of the U.S. population living with HIV in 2010. The CDC estimates that by next year (2015), this number will double, which means that half of the people living with HIV in this country will be 50 years and older. There are several reasons why older Americans who are HIV+ may not be aware of their status:

  • HIV tests aren’t always included as part of the check up routine, and seniors tend to think they don’t know need to ask for one;
  • The signs of HIV/AIDS can be mistaken for the aches and pains of normal aging;
  • Older adults are less likely to discuss their sex lives or drug use with loved ones or a health care provider;
  • Myths and misinformation that lead seniors to believe that they are “too old” to get infected;
  • Lack of targeted public education*.

However, we should not only be concerned with reducing HIV infections among the older adult population.

Medical advances have allowed people with HIV who get treated— and stay in treatment— to lead longer, healthier lives. Yet, the success of these new treatments and the increased longevity of patients have led to new challenges to the proper prevention and care of older Americans living with HIV, especially those who are from diverse communities. There is a lack of research aimed at aging with HIV, as well as few prevention campaigns, clinical guidelines, demonstration projects and training initiatives targeting older adults living with HIV, particularly diverse seniors. While the Affordable Care Act does include provisions to support people living with HIV/AIDS, including older Americans, the public policy landscape is scarce when it comes to seniors and HIV/AIDS.

[Related content: Learn how the ACA is helping older Americans living with HIV.]

Older Americans with HIV are often excluded from major legislation, policy initiatives and programs— from the White House Conference on Aging, to the Older Americans Act and the Ryan White CARE Act, to the Medicaid expansion, and more.

Left unaddressed, generations of older adults with HIV/AIDS will lack the supports they need to age with dignity and in the best health possible. This is why the Diverse Elders Coalition in collaboration with ACRIA (AIDS Community Research Initiative of America) released 8 recommendations that have the potential of dramatically improving the lives of diverse seniors, and all older Americans, living with HIV.

What you can do on National HIV/AIDS and Aging Awareness Day

* To combat this, NHCOA is a partner of the CDC’s Act Against AIDS Leadership Initiative, which is focused on reducing the incidence of HIV/AIDS among diverse communities. Through culturally and linguistically appropriate, and age sensitive outreach and education, NHCOA conducts HIV outreach and education among Hispanic older adults and families to dissipate the stigma and silence.

Additional Resources

www.cdc.gov/hiv

www.aids.gov

www.hhs.gov/ash/ohaidp

www.aoa.gov/AoARoot/AoA_Programs/HPW/HIV_AIDS

Posted by Maria Eugenia Hernandez-Lane, Vice President of the National Hispanic Council on Aging (NHCOA). The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.

One last push – Getting the Older Americans Act (OAA) reauthorized in 2014

August in Washington, DC usually means Congressional recess, when all Congress members take a break from Washington and return to their districts. Depending on whom you ask, August in DC could either be a peaceful and quiet time or a time to schedule meetings and diligently prepare for Congress’ return post-Labor Day. For the National Hispanic Council on Aging (NHCOA), it has been the latter. As we enter the last quarter of the year, NHCOA is focusing efforts on scheduling Hill visits to educate Congressional staffers and reiterate how critical it is for Congress to reauthorize the Older Americans Act as they return to Washington from their states and districts this week.

The Older Americans Act (OAA) is one of the most important laws for older adults, and as it nears its 50th Anniversary, it is in need of greater recognition. The programs of the OAA are also extremely important in allowing older adults to age in place, with dignity, and in the best possible health, as it authorizes a wide variety of programs focused on health, nutrition, job training, and caregiver support. The OAA, which expired in 2011, has not been renewed— or reauthorized— since. Each year, the various programs are funded individually through appropriations bills, but this is neither an efficient nor a sustainable method. Reauthorization is urgently needed!

As we’ve written in previous blogs, NHCOA strongly supports a reauthorization of the Older Americans Act—but it must happen before the end of 2014. While a straight reauthorization would be better than none, it would be more effective to have a reauthorization that accounts for the growing size and diversification of the older adult population and one whose needs are ever fluid and changing.

Thus far, there are four bills on record, asking for reauthorization: H.R. 4122 (Rep. Bonamici- Oregon), H.R. 3850 (Rep. Gibson, New York), S. 1562 (Sen. Sanders- Vermont) and S. 1028 (Sen. Sanders). Of these, S. 1562 is the most advanced in the legislative process, having been sent to committee, where it is currently stuck. It is this impasse that has delayed the much-needed reauthorization of the OAA.

Given that it is an election year and a change in the political climate might make it even harder for a committee compromise to be reached, NHCOA and its fellow Diverse Elders Coalition co-founders urge Congress to take action now before all the hard work put forth in the past year is lost and millions of America’s older adults lose access to programs and services which currently allow them to age in place and remain engaged and active members of their communities.

We ask Congress to take into account the millions of baby boomers who cannot wait for another year of political in-fighting and who urgently need these services in their local communities. While we understand that the list of urging and pressing matters awaiting Congress is long, it is important to highlight that OAA is equally as important to those whom it affects most, and through compromise and strong Congressional leadership, this Act can be reauthorized within the few legislative days left.

In the meantime, NHCOA and the DEC will continue to fight for the OAA on behalf of the millions of diverse seniors who rely on the services, programs, and funding this law provides.

Dr. Yanira Cruz is the President and CEO of the National Hispanic Council on Aging. The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.

Related Older Americans Act posts:

Recognizing and caring for our grandparents (National Grandparents Day) with a view towards the 2015 White House Conference on Aging

Sunday, September 7, 2014 is National Grandparents Day. What a great opportunity to recognize those that have given so much love and support! Grandparents Day was established as a national holiday in 1978 as a way to recognize and value the contributions of our nation’s seniors. Our elders have often done much to support our families in economic, emotional and spiritual ways and yet these contributions are often overlooked and unappreciated.

In the years since the establishment of National Grandparents Day, there has been a grandparents boom with the numbers rising from 40 million in 1980 to 65 million in 2011 and an estimated 80 million in 2020. This “Elder Boom” is not a crisis but a blessing. We’re living longer and have the opportunity to spend more time together. The question is how do we live as we age?

Our friends at Caring Across Generations have run a summer long campaign “ThrowbackSummer” to celebrate the culture, memories and relationships that unite us across generations. Their goal is to build a national movement to transform the way we care in this country. And that includes caring for our elders.

Right now, our country has no comprehensive plan to care for our aging parents and grandparents. More broadly, seven in ten of us will need home care at some point in our lives, due to disability or the simple natural process of getting older. And the vast majority of us – 90% – would prefer to stay at home instead of being placed in a facility. But for too many of us, home care is not an option.

Grandparents Day is the perfect time to discuss issues such as long-term care. The process of aging, or losing mobility due to disability, can also be scary and challenging for many people – and therefore something that most people want to avoid thinking about. Our grandparents have done so much for us. SEARAC’s Bao Lor learned about love and courage and hard work from her grandpa, a refugee from Laos. However some grandparents can face a wide range of challenges when performing primary childcare for their grandchildren. Now it is time to consider what we can and should do for them so that they can age with dignity and independence.

Preparations have begun for the 2015 White House Conference on Aging (WHCOA). Occurring every ten years, the WHCOA is an opportunity to look ahead to the issues that will help shape the landscape for older Americans (our grandparents) for the next decade. In late July, Cecilia Munoz, an Assistant to the President and Director of the Domestic Policy Council, outlined possible themes for next year’s WHCOA:

  • Retirement security – Financial security in retirement provides essential peace of mind for older Americans
  • Long-term services and supports – Older Americans prefer to remain independent in the community as they age but need supports such as a caregiving network and well-supported workforce
  • Healthy aging – As medical advances progress, the opportunities for older Americans to maintain their health and vitality should progress as well
  • Protection – Seniors, particularly the oldest, can be vulnerable to financial exploitation, abuse and neglect. Protect seniors from those seeking to take advantage of them

In honor of National Grandparents Day, the Diverse Elders Coalition recognizes and appreciates the many and varied contributions of our nation’s seniors. In the year ahead, we plan to ensure the voices and needs of our diverse communities are fully represented in the 2015 White House Conference on Aging.

Thank You Grandparents!

Photo: courtesy Caring Across Generations

Photo: courtesy Caring Across Generations

Photo: courtesy Caring Across Generations

Photo: courtesy Caring Across Generations

Photo: courtesy Caring Across Generations

Photo: courtesy Caring Across Generations

Photo: courtesy NHCOA

Photo: courtesy NHCOA

Patrick Aitcheson is the Interim National Coordinator for the Diverse Elders Coalition (DEC). The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.

8 Ways the U.S. Must Prepare for More Seniors with HIV

This article by David Heitz originally appeared on HealthlineNews.com

On the eve of National HIV/AIDS Long-Term Survivors Awareness Day, a new report shows that the median age of Americans with HIV is 58 and that the the United States is woefully unprepared for a growing population of seniors with the virus.

By the end of 2010, more than 630,000 people in the United States had died from AIDS, according to the Centers for Disease Control and Prevention (CDC). At the end of 2009, more than 1.1 million people in the U.S. ages 13 and older were living with HIV. Some 80,000 of these people have been living with the disease for decades, and they are known as long-term survivors. Thursday, June 5, is National HIV/AIDS Long-Term Survivors Awareness Day. Read More

Fund more Alzheimer’s studies, a high black risk (Black History Month)

In honor of Black History Month, the Diverse Elders Coalition is featuring stories relevant to black aging during February. A new story will be shared every Wednesday, with additional posts shared throughout the month. Be sure to visit diverseelders.org regularly during the month of February.

This article by Lewis W. Diuguid (ldiuguid@kcstar.com) originally appeared in The Kansas City Star

Since my mother died of Alzheimer’s disease in 1994, I always wondered as I attended fundraisers and events for caregivers why so many African Americans filled the rooms.

A recent study by John Hopkins University helps explain it. It shows that older African Americans are two to three times more likely to have Alzheimer’s disease compared with whites. That’s a new Black History Month concern for young African Americans and their elders whom new generations depend on for wisdom and advice. Read More

Fighting the Good Fight Against Isolation

As we advance in life it becomes more and more difficult, but in fighting the difficulties the inmost strength of the heart is developed. Vincent van Gogh

W., 66, a former journalist and man about town, entered the meeting on LGBT issues a little late and his gait was slower than usual. When the meeting ended, he asked for a ride to the subway. As we rode, he talked about why he was late: not knowing the bus routes for this part of the city, the bus being late and the neighborhood being less than desirable. He hadn’t been feeling well and almost didn’t come to the meeting. It occurred to me that this African American elder continues to “fight the good fight” to beat the isolation that can plague us as we age and attended the meeting anyway.

Isolation is one of the great robbers of an enriched quality of life for older adults across the spectrum of race/ethnicity, class, religion, national origin, familial status, disability, gender identity, or sexual orientation. Self-imposed isolation related to aging can include an unwillingness or inability to drive, limited transportation options, chronic ailments and disabilities, lack of events for their peer group, the lack of compatriots and a youth oriented culture. Read More

Deportation: A Human Rights Issue

Deporting Americans: A Community United Against Deportations

A couple of weeks ago, I posted a piece entitled “Caught in the Deportation Machine …” about how deportation affects elders – both those who are detained and deported, and those who suffer trauma from losing children or grandchildren. This photo montage, “Deporting Americans,” was created in Philadelphia by 1Love Movement when the tight Cambodian American community in that city was hit by a deportation crisis. Dozens of Cambodian folks with green cards, including Chally Dang and Mout Iv, were suddenly rounded up because of old convictions. Many had been rebuilding their lives for years after making the mistakes that had originally made them deportable. Many left behind U.S. citizen children, parents, and grandparents. Entire neighborhoods were devastated. Read More

Webinar Recording: Why the Affordable Care Act Matters to Diverse Older People

The health coverage expansions under the Affordable Care Act (ACA) will affect you, your loved ones and your communities. The Diverse Elders Coalition represents millions of diverse older people age 50+ who are among those affected: they include the Health Insurance Marketplace, the Medicaid expansion, new benefits for elders 65+ on Medicare, and a range of protections that make health care more accessible for lesbian, gay, bisexual and transgender (LGBT) older people and older people of color. The number of uninsured older adults age 50-64 continues to rise—from 3.7 million in 2000 to 8.9 million in 2010. In addition, people of color make up more than half of uninsured people in the U.S.— and research shows that people of color, across the age span, face significant disparities in physical and mental health. Additionally, many people of color delay care because of potential medical costs and out of fear of discrimination or cultural incompetence from medical providers. This webinar highlights both national and state-specific examples on what is being done to ensure that older people know about the changes that are taking place under the ACA and how it affects them.

Speakers: Yanira Cruz, President and CEO, National Hispanic Council on Aging; Michael Adams, Executive Director, Services and Advocacy for GLBT Elders (SAGE). Special thanks to our co-sponsors, The John A. Hartford Foundation and The California Wellness Foundation.

Original Webinar date: Wednesday, November 6, 2013.

Watch it at http://www.screencast.com/t/yzeTQbgEze2.

Caught in the Deportation Machine: Elders, Family Separation, and Immigration Reform

This year, the Obama administration will surpass the 2 million mark – this is, it will have deported 2 million people since 2008, more than any other administration in history. The largest numbers of people being deported are those without legal status, but many Green card holders are also among the 2 million deportees. Since 1998, over 13,000 Southeast Asians (from Cambodia, Laos, and Vietnam) have been deported, including many Green card holders who arrived in the U.S. decades ago as refugees fleeing war and genocide. The majority of those deported are under the age of 35, but many elders also get caught in the deportation machine. Even more elders who remain in the U.S. suffer emotionally and financially when their adult children are taken away.

Despite official Immigration and Customs Enforcement (ICE) guidance that agents should not “expend detention resources” on those who are elderly, many immigrant elders are detained and deported. According to information gathered through a Freedom of Information Act (FOIA) request by the NYU School of Law Immigrant Rights Clinic, the Immigrant Defense Project, and Families for Freedom, between 2005 and 2010 the New York City ICE Field Office apprehended 1,275 noncitizens over the age of 55, and of these, at least 141 were subject to mandatory detention. Seniors struggle more than most in detention – they are more likely to be Limited English Proficient, and are more likely to suffer from health problems and dementia.

Huyen Thi Nguyen, an elderly Vietnamese woman, was detained in an immigration detention center for 16 months after serving her sentence for cash-for-food stamp fraud. She continues to fight her deportation, while suffering from mild dementia. Claudette Hubbard escaped LGBT violence in Jamaica in 1973 and became a U.S. Green card holder. She has been detained by ICE for over two years because of a 20-year-old conviction from a drug charge, even though she has fully rehabilitated and is mother and grandmother to U.S. citizens.

Claudette Hubbard with her U.S. citizen daughter and granddaughters

Claudette Hubbard with her U.S. citizen daughter and granddaughters

Read More

Our Issues Entwine: LGBTQ Aging and Economic Justice

MY IMMIGRANT MOTHER sits silently in a room the size of a small kitchen. Earlier this year, she survived multiple failures of the heart, kidneys, and limbs over the course of six weeks. She is seventy-three, uses a wheelchair, and for the first time in her life is surrounded by white people who do not speak Spanish, in the only nearby nursing home my parents can afford. In turn, my father drives through the days confronted by three omnipresent realities: hour-long daily visits with my mother, a night shift to keep him mentally and financially afloat, and a mailbox flooded with health care bills, insurance disputes and the complexity of navigating Medicare, Medicaid, and private insurers. When I speak of health reform, queer rights, or racial and economic justice, he gazes at me solemnly. He survived a lifetime of racial discrimination, fought in two wars and lived through the ensuing decades with a cacophony in his psyche. At seventy-eight, nearly blind and deaf, he will hear nothing of systems and reform. More often than not, these days we sit in silence.

This silence haunts me as an advocate who works at the intersection of aging and lesbian, gay, bisexual, transgender, and queer (LGBTQ) rights. The aging and LGBTQ advocacy fields often propose policy solutions that are too narrow to address the complexity of how all marginalized people — including heterosexual people of color such as my parents, members of the LGBTQ community, and more — experience the process of aging. We need social transformations that address the intersecting forms of oppression that older people face — and that can make sense of the chaos and silence that shroud my parents. This has become especially clear to me through my work as the director of a national policy program devoted to improving the health and well-being of LGBTQ older people.

A closer look at the lives of aging LGBTQ people reveals how deeply identity politics and class politics are entangled. Here, an older protester rallies for marriage equality in Pasadena, California.

A closer look at the lives of aging LGBTQ people reveals how deeply identity politics and class politics are entangled. Here, an older protester rallies for marriage equality in Pasadena, California.

For the full essay, which originally appeared in Tikkun Magazine click here

Not All Asians Are the Same: Diversity within the AAPI Older Adult Population

When our nation talks about Asian Americans, it often groups together people from different cultures and those who speak different languages. Someone from China faces different challenges than a refugee from Cambodia, yet research typically wouldn’t show this. As a group, Asian Americans and Pacific Islanders (AAPIs) are the fastest growing population in the United States. Despite the large and rapidly growing population, research and data on AAPI elders is limited and often presented in aggregate (i.e. grouped together). Aggregate data belies the diversity and the challenges faced within the AAPI older adult population.

The National Asian Pacific Center on Aging (NAPCA) recently published five reports that paint a fuller and more accurate picture of the challenges many APPI older adults face. The reports divide the population into three groups (aged 55 & older, aged 55-64, and aged 65 & older) and highlight the language, economic, and employment characteristics of AAPI elders. NAPCA used publically available sources from various government agencies, and disaggregated (or separated) the data to better depict the realities of the AAPI older adult population (55+). See an example below.

Percent Below Poverty Level

Source: U.S. Census Bureau, 2006-2010 American Community Survey, 5-Year Estimates

Demystifying the “Model Minority” Stereotype Read More

Open Letter to Health Reform Advocates: Pay Attention to Discrimination

The harms inflicted by discrimination reveal themselves in our bodies as we age — as people of color, as poor and low-income people, and as lesbian, gay, bisexual and transgender (LGBT) people. The symptoms manifest as higher rates of high blood pressure, cholesterol, diabetes, heart disease, HIV/AIDS, depression, social isolation and more. In medical charts throughout the country, our bodies record what it means to survive a life shaped by perpetual poverty, higher concentrations in low-wage jobs with no health insurance, thin retirement options and inadequate protections in the workplace. They depict our fractured relationships to health care — from cultural and linguistic barriers to overt bias and discrimination from health and aging providers, to a long-held, hard-earned distrust of medical staff internalized through years of differential treatment.

Our bodies confirm vividly the geographic dimensions of structural inequality, which can predict long-term health as early as childhood, based largely on where a person is born. We inhale the poison of inequality throughout our lives, and it inflames in our later years as a dismal diagnosis, a medical crisis or a preventable death. Yes, severe illness will surprise many of us at some point in our lives, and death is indiscriminate, but as empirical fact, poor health affects certain demographics disproportionately at earlier and higher rates, often the same people with no health coverage to manage the repercussions.

Oct. 1 aims to begin reversing these conditions. The health insurance marketplace established through the Affordable Care Act (ACA) offers opportunities to shop for state health insurance plans and begins improving coverage for the 47 million uninsured people in this country. Millions of people work in jobs with no health coverage, cannot afford insurance on their own and fall through gaps in public support that leave them uninsured or underinsured. Without insurance, people accrue unmanageable debt, delay health care and in turn watch their health worsen over time — a trajectory most often experienced by people of color, LGBT people and low-income people. These hardships intensify for older people who must also contend with age-related bias in the workplace and the challenges of paying for out-of-pocket expenses with meager incomes. An all-inclusive vision of health reform must incorporate the realities of aging as early as age 50. Read More

Language, Idioma, 語, ភាសា: Speaking limited English can pose unique challenges for older people

Map of people that speak Spanish at home.  Source: Badger, Emily, “Where 60 Million People in the U.S. Don’t Speak English at Home,” The Atlantic Cities

Map of people that speak Spanish at home. Source: Badger, Emily, “Where 60 Million People in the U.S. Don’t Speak English at Home,” The Atlantic Cities

According to the Census Bureau, about 20% of people speak a language other than English at home. That’s 1 in 5 people! And over the years, this number has only grown. The Census Bureau has developed a map that shows in which parts of the country these people live. What the map shows is that there are people whose preferred language is not English in all but the most sparsely populated parts of the country. Language access is a civil right, and these rights are reflected in federal law. It is also becoming more common to see instructions on packages, advertisements, and other messages translated into languages other than English, as well. When it comes to language access, the policies of the United States promote inclusion.

Despite these efforts at inclusion, accessing many government programs poses unique challenges for older adults with limited English speaking ability. Programs like Medicare Part D (the prescription medication program) and the Affordable Care Act’s health exchanges rely on consumers to choose the plans that will balance value and health coverage. However, there are multiple studies from the implementation of Medicare Part D that state consumers do not choose the most economically efficient options. Most people, particularly those who prefer to speak in a language other than English, could benefit from learning more about their health care options. Read More

LGBT Elders: Poverty’s Challenges Worsen With Age

6956997213_7d1f47b6d6_z
At 81, George Stewart has been a longtime advocate for lesbian, gay, bisexual and transgender (LGBT) older people in New York City. He’s a former Army clerk and U.S. Air Force court reporter, and last summer he was selected by the White House as one of six Champions of Change nationwide for LGBT Pride Month. Yet behind his active civic life and national profile lies another reality: George Stewart is low income, and as with millions of older people, he relies on federal assistance to supplement his income and on local services for community support. For many low-income LGBT older people, public assistance and support networks interlock as lifelines — ameliorating poverty, reducing isolation and helping to manage the slew of challenges that come with getting older. Unfortunately, despite the prevalence of poverty among elders in this country, including LGBT elders, these realities are rarely brought to light. Read More

Five Reflections on Advocacy with Southeast Asian American Elders

“Will immigration reform help me reunite with my grandchildren?”

 “My husband passed from cancer I wish there were more support services.”

 “We want to take care of our family in harmony.”

An elder at Cannon House Office Building

An elder at Cannon House Office Building

On Tuesday, March 26, 2013, 60 youth and elders spoke up with these comments and questions. SEARAC, alongside the Cambodian Association of Greater Philadelphia, held an advocacy day where the group met with the White House Initiative on Asian Americans and Pacific Islanders, the federal agencies, and Congressional offices in Washington, DC.

It was incredibly inspiring this week to see elders speaking up, with local impact through the group of Cambodian-American elders we hosted, as well national as I followed coverage of the Supreme Court arguments on United States v. Windsor. Check out our fellow DEC partner SAGE’s blog for more great insights on the issue and more about Edie’s own amazing story.

The week isn’t even over yet, but I wanted to contribute five reflections on advocacy with Southeast Asian American elders: Read More

The Re-launch is here!

Two weeks ago, we announced that we would be re-launching the Diverse Elders Coalition Blog.  Read here to find out more.

We are thrilled that this day has finally come. As we previously promised, in addition to our regular contributing bloggers, we will have exciting guest bloggers.  We will also display our content in a variety of different ways (e.g., pictures, videos, interviews, Top 5 columns, etc.) And much more! Have a suggestion? Contact us.

You can bookmark this page or subscribe to our RSS feed to stay updated. Check back on Wednesday to read our latest post, courtesy of National Hispanic Council on Aging (NHCOA). Until then, enjoy some highlights from the blog’s history:

1) Watch Our Story

2) The Unique Needs of Asian American and Pacific Islander Elders

3) 10 Considerations for Working with the Diversity of Older LGBT Latinos

We are Re-launching On March 18!

The Diverse Elders Coalition (DEC) was founded in 2010, and in July 2012 we launched our official website, which also serves as a news and commentary blog on the social, political and economic issues affecting the growing yet vulnerable demographic of elders who are Black, Hispanic, Asian/Pacific Islander, American Indian/Alaska Native, and lesbian, gay, bisexual and/or transgender (LGBT).In the last eight months, we have put out numerous posts on the issues that affect our communities and the creative ideas and best practices to address them. In the summer of 2012, we also released Securing Our Future: Advancing Economic Security for Diverse Elders, a resource that describes the issues facing elders of color and LGBT elders, who together will represent a majority of older adults in the United States by 2050.

In this time, we have received some wonderful comments on our work, as well as helpful feedback from our readers (all of you) on how to improve the site to better meet your needs—and we listened to you. Members of the Diverse Elders Coalition came together and crafted an exciting plan for moving forward by implementing many of your ideas, which you’ll see starting with our blog re-launch on March 18.  Here are some of the improvements to look forward to:

  • In addition to our regular contributing bloggers, we have some exciting guest bloggers scheduled!
  • Content displayed in a variety of ways (e.g., pictures, videos, interviews, Top 5 columns, etc.)
  • More news and original content from coalition members
  • And more!

 

As we look forward to March 18, please like us (and tell a friend!) on Facebook to stay updated on the events surrounding the launch and the latest news affecting diverse elders. If you have any questions about DEC or would like to submit an idea for a blog post, please contact us.

See you on the 18th!

To learn more about DEC members, click here.

LGBT Older Americans Cannot Afford to Go Over the Fiscal Cliff

The following is a guest post by George Stewart, SAGE constituent.

Not long ago, the Washington Post reprinted a letter signed by a group of lesbian, gay, bisexual and transgender (LGBT) millionaires asking Congress to come to a resolution on the “fiscal cliff” by preventing across-the-board spending cuts to federal programs, preserving tax cuts for the middle class and allowing tax cuts for the wealthiest to expire.  As heartened as I was to see some LGBT voices in the public debate on economic issues, I wondered how many people know how the impending spending cuts will impact a vast majority of LGBT older people throughout the country—people like me.

I have spent much of my life looking for where I fit in, while striving to serve my country and my community. I’ve witnessed intolerance in my life, as well as positive change. In the 1950s, I was a black soldier in a segregated Army unit stationed in the South. I found a lot of camaraderie with the soldiers in my unit, but we always felt that we had to go above and beyond—if another outfit shined the tops of their shoes, we’d shine the bottom of ours. I was stationed last in Louisiana, where one of my most vivid memories is being singled out by a policeman because he thought I was sitting too close to a white woman in a public park. When my enlistment ended in Louisiana, I decided that I would move to New York City.  I hoped my move would lead to better things—an opportunity to be an individual in a big city, instead of being viewed as just a black man inappropriately sitting down next to a white woman. Read More

A Federal Bill for LGBT Elders

Last week, Sen. Michael Bennet (D-CO ) introduced a bill that could improve supports for millions of LGBT elders through the Older Americans Act. SAGE has been working on this issue for almost three years — from raising awareness and producing policy reports, to hosting Congressional briefings and securing support from the influential Leadership Council of Aging Organizations, to working closely with Sen. Michael Bennet (D-CO) and various aging groups in DC.

Read my recent editorial in The Huffington Post about this bill’s importance to LGBT elders. Read More

Introducing the ‘Improving Services and Activities for Diverse Elders Act’

There are many services and supports for older adults available at no cost. Things like home delivered meals, transportation services, and benefits counseling all help older adults live in their own homes and communities and age in dignity. The Older Americans Act (OAA) is the law that provides these services and supports and creates the nation’s infrastructure for aging. It is an invaluable law that helps millions of people each year. Despite the law’s successes and importance, it faces deep budget cuts and is becoming outdated. Read More

The Supreme Court Decision: A Good Day for Medicare, Seniors and their Families

BY FAY GORDON, NATIONAL SENIOR CITIZENS LAW CENTER

On June 28, I joined 1.7 million anxious SCOTUSblog followers, and held my breath until 10:09 a.m. when the words “the individual mandate survives as a tax” appeared on the screen. Cue the applause in the office — health care reform survived!

While we celebrated, I thought of the seniors benefitting from health care reform. Unlike the lawyers and wonks, they were not rushing to print copies of the opinion, or feverishly e-mailing colleagues. They likely carried on with their Thursday morning-working and taking care of families and grandchildren.  In a flashback to the 2010 health care debate, the law’s tremendous improvements for seniors was largely ignored amid the squawking about Obamacare, penalties and taxes. Once again, seniors run the risk of misinformation and myths about the Affordable Care Act (ACA).  This is an ideal time to reflect on the ACA’s positive changes:

Read More

Latino Seniors Describe their Needs

This summer, the National Hispanic Council on Aging (NHCOA) has been traveling to key regions of the country to host its Promoting Communities of Success Regional Meetings.  These meetings allow NHCOA to hear the needs and perspectives of Hispanic older adults, their families, and caregivers and also to empower them to become more civically engaged.

Newspaper articles print grim economic statistics, but in order to learn the true human cost of these numbers, we must listen to real individuals and hear their background and perspective. This information is key in aligning daily needs with meaningful policy solutions. Three common themes we picked up at the Dallas and Miami regional meetings were: (1) Hispanic older adults are still recovering from the economic downturn of 2008, (2) they are uneasy about the future, and (3) despite their fears and concerns, they are eager to be a part of the solution.

Read More

Reflections on Social Security from a Young Person

Earlier this summer, I participated in the National Academy of Social Insurance’s seminar for young people, “Demystfying Social Security.” It was a great experience to engage with summer interns and learn from other young people on the Social Security program, and it’s reaffirmed my deep appreciation for Social Security as a key tenet of the our social safety net.

Social Security is so often thought of as a program for the elderly and those who are retired. But as a young person who hopes to be able to retire one day, I am struck by the broad impact of the program to reach nearly every American at every age, every income level, able-bodied as well as differently-abled. More than 6.5 million American children receive family income from Social Security. Specifically, more than 1 million children are kept out of poverty from Social Security benefits. And, unfortunately, a 20-year-old worker has a 3 in 10 chance of becoming disabled before reaching the normal retirement age, making Social Security Disability Income an important asset.

Much of the negative press around Social Security has accused the program of running out of money, paying out poor returns, and being an overall poor investment. In actuality, Social Security is incredibly stable. Social Security is fully financed until 2033, and even if Congress takes no action, Social Security will still be able to pay about 85% of obligations until 2086. If the future still seems uncertain, refer to Social Security’s track record: it has never missed a payment since its inception in 1935, and has consistently paid out benefits on time and in full. Social Security has outlasted wartime turmoil, Wall Street booms and busts, and political fluctuations. But most importantly, Social Security is insurance that has been there to support individual Americans through our personal life events.

Read More

Growing an Online Movement for Our Communities

The Diverse Elders Coalition came together in 2010 to imagine policy solutions that would improve the lives of elders of color and LGBT elders. Already, we have seen some advocacy wins and this summer we released a historic report on the economic security issues facing our communities.

Now we’re trying to grow our visibility and build a national online movement for diverse elders. Watch the video below and help us spread the word!

 

 

An LGBT-Inclusive Older Americans Act

The Older Americans Act (OAA) serves as the country’s leading vehicle for delivering services to older people nationwide, providing more than $2 billion annually in nutrition and social services. Since its enactment in 1965, the OAA has aimed to ensure that older people have the supports they need to age in good health and with broad community support. It places an emphasis on more vulnerable elders who face multiple barriers that can aggravate economic insecurity, social isolation, and various health challenges related to aging.

Yet strangely, despite ample evidence of their heightened vulnerability and their need for unique aging supports, lesbian, gay, bisexual and transgender (LGBT) older people are invisible in this landmark law. As the OAA comes up for reauthorization, and as millions of LGBT people enter retirement age, Congress should ensure that the OAA supports all elders, including those who require unique supports. LGBT older adults should be written into the framework of the Older Americans Act.

Read More

Empowering Diverse Older Americans to Become Civically Engaged

“[NHCOA is] multiplying leadership through us. If these thirty some people trained today can reach at least two people, in one or two weeks we will double. And, in few more weeks, they will train others and we will multiply again, and so forth.” – Maria Teresa Guzman, Empowerment and Civic Engagement Trainings (ECET)  

When civic engagement comes to mind, we may think of youth mobilization and empowerment. Although engaging our younger generations is crucial, it is equally as important to empower older voters. Yet as the growth of the older American population quickly outpaces that of youth, we see certain segments of this population becoming increasingly isolated.

That is why we need to ensure the voice of older Americans—especially diverse elders— is elevated at the decision-making table when it comes to public policies that can dramatically impact their lives.

The National Hispanic Council on Aging (NHCOA) is conducting its signature Empowerment and Civic Engagement Trainings (ECET) throughout key regions of the country to energize, mobilize, and empower Hispanic older adults, families, and caregivers to be their own best advocates.

Read More

‘Elders Support Families in Economic, Emotional, and Spiritual Ways’

BY DOUA THOR, FORMER EXECUTIVE DIRECTOR, SOUTHEAST ASIA RESOURCE ACTION CENTER (SEARAC)

My grandmother helped raised almost all of the grandchildren in our family at some point or another. My grandmother had nine children and because my family came to the United States as refugees, most of our parents had to work multiple jobs. My parents, aunts, and uncles were grateful to have her support.  At the federal level, we separate the issues of elders from the rest of the population in policy discussions. Sometimes, those issues are even pitted against each other, and we are made to think that providing for elders means that there is less for young people. On the ground in communities, however, the lives and well-being of elders are closely intertwined to the well-being of communities and families. Like my grandmother, elders support families in economic, emotional, and spiritual ways.  And yet, their contributions are often overlooked and unappreciated.  Southeast Asian American elders, have become invisible to the mainstream.

As they age, many Southeast Asian American elders (who arrived as refugees from Cambodia, Laos, and Vietnam) face numerous barriers and challenges to attaining long term care. As a community, over 90% of Southeast Asian Americans 65 and older in California live in family households, as opposed to institutional alternatives.  There are limited services that allow elders to remain in their own homes, and there are even fewer opportunities for culturally and linguistically-specific services that would support the independence and living choices of elders. SEARAC works toward ensuring that there is adequate and stable funding and resources for programs that support elders who choose to maintain independent lifestyles in their homes and their communities and to ensure that provisions of the Affordable Care Act preserve and improve existing community-based and in-home care programs. Additionally, SEARAC works to ensure that aging policies address language access provisions and culturally specific needs of elders so that English language learners have access to vital information and resources.

Read More

Diverse Elders Coalition to Hold Capitol Hill Briefing

If you’re in the Washington, DC area next Wednesday, join the Diverse Elders Coalition for a briefing on the economic issues, and proposed policy solutions, facing vulnerable older people, including Black elders; Hispanic elders; Asian and Pacific Islander elders; American Indian and Alaska Native elders; and lesbian, gay, bisexual and transgender (LGBT) elders.

Securing Our Future: A Capitol Hill Briefing on Advancing Economic Security for Diverse Elders
Wednesday, July 25, 2012
10 am – 12 pm
Room SD-562, on the north side of the Capitol in the Dirksen Senate Office Building

Read More