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.

 Increasing awareness

 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.

 "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.

http://stumaddux.com/GEN_SILENT.html

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.”
Sibelius said.

   http://sageusa.org/index.cfm

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. 

www.aarp.org/pride

http://www.aarp.org/relationships/friends-family/aarp-pride/

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NEWS UPDATE

Caring for Your Same-Sex Partner at Home

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.”

Source:http://www.homewatchcaregivers.com/homewatchnews/11-11-21/Caring_for_Your_Same-Sex_Partner_at_Home.aspx