Resources from HIV & Aging Conference

In June 2019, Charles Curry and Barry Waller of the Steering Committee gave two presentations on HIV & Aging. This page specifically lists the resources and links mentioned in those presentations.

Click on the gray titles to navigate.

1 “Community Conversations: LGBTQ Aging in Austin”, April 2016

2 Austin Area Epidemiological Profile, HIV Planning Council, 2019

3 “Strategies to Improve the Health of Older Adults Living with HIV, National Center for Innovation in HIV Care, May 2016

4 Maintaining Dignity, AARP, March 2018

5 LGBT Older Adults: Facts at a Glance. www.sageusa.org

6 “The Forgotten MiddleHealth Affairs, May 2019  

7 Is Loneliness a Health Epidemic” NYT Feb 11, 2018

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HRSA Analyzes Growing Ryan White Client Population Over 50 Years Old


1. From the Community Conversation: LGBT Aging in Austin, sponsored by AustinUp and Austin Prime Timers on April 9, 2016

Issue Identification

General

We asked the group, which mostly included longtime Austinites, how Austin compares to other cities in terms of “age-friendliness.”

  • Climate is more livable in Austin, but transportation is difficult. “We live close to two bus lines, but that is rare.”
  • I lived in LA, which is not very friendly. I’ve also lived in NYC, which has better public transportation. NYC is age-friendly, much more than LA.
  • Austin not as affordable as it once was. But it is accessible, with ramps, close-in parking, and it’s relatively flat.
  • We are world class when it comes to cultural events. A variety of local gatherings are listed on meetup.com. Austin is very community-oriented.
  • Austin doesn’t have a specific area or neighborhood for the gay and lesbian community. That may affect this group as it ages.

Social Participation

  • The suicide rate among the aging gay population is high. Many are socially isolated and still dealing with bigotry. Some are worried about going into a nursing home, and wonder if they will have to go back into the closet. This is, after all, the Stonewall Generation, that has experienced institutional prejudice.
  • We’ve been trying to establish a gay community center in Austin for years.  The Metropolitan Community Church tried to do it, but couldn’t make it work financially on their own. Without the support on the City Council that we had when Randi Shade was there, we won’t get very far. Now that the city council has changed to district leadership, and because there is no one gay neighborhood, lobbying is more difficult. We don’t have a voice at the City.
  • “Isolation is the number one issue as we age. That’s an issue that we can address together.”
  • Experience has taught us that when there’s pain, people come together. That is why we formed AGLSS (Austin Gay and Lesbian Senior Services) as a division of Family Eldercare. The fear and pain surrounding aging may bring the gay community together.
  • Several years ago, a couple came from LA moved to Austin. But they recently moved back to LA because they weren’t able to “crack this community.” It’s difficult in Austin for the gay community to come together. There is no methodology for communicating within the gay community.
  • “I am considering moving away from Austin after retirement.”
  • When we talk about diversity as it applies to building an age-friendly plan, we need to include language about LGBT issues.
  • Note shared at “Journey to Elderhood,” a workshop in upstate NY: When gay elders move into assisted living facilities and senior communities, they (and their friends and family) need to ask the staff, “What is your training re: the needs of LGBT residents?” One example of inclusivity is gender-neutral restrooms. But the facility staff also needs training in LGBT-inclusive language, etc.
  • There is a lack of understanding about issues of the aging LGBT community. Community and cohesiveness are important.
  • “I have lived in a 55+ community and felt comfortable. I don’t see why we couldn’t establish one for the gay community here in Austin.”
  • Nursing home regulations are an obstacle.
  • SAGE is useful. The problem is that people don’t know about these resources – just as people didn’t know about AGLSS.
  • We need to explore ways to get the word out – and even lobby City Council.
  • The City Charter needs to include openness toward the LGBT community.
  • “The worst thing you can be in San Francisco is old, gay and poor.”
  • The perception is that everyone in the gay community is rich. But while some do have money, most live at or below the poverty level.
  • Many restaurants are very loud, but most in the room felt comfortable going out rather than staying home.
  • “I’ve given up going to the gay bars, because I can’t hear anything.”
  • “I’m not worried about LGBT seniors who have money. They’ll be able to figure it out. But, for example, a couple of my friends are on disability with no support network. How can we help them? There needs to be a way for us to be here for our community.”
  • “There is ageism in our own community. Nobody wants to be affiliated with old gay people, including old gay people.”
  • People don’t want to talk about aging. The problem is not with the hetero community – it’s with the gay community.
  • “I fear isolation. I want to be around young people as I age. Do I  want to be part of a gay ghetto…or a senior ghetto?”
  • Mueller is a planned community with a healthy mix of young, old, diversity, etc. It is something that the city can do for us, i.e., create for us?
  • Most of the gay community meets in bars. But bars do not welcome gay aging fundraisers and events. Businesses are not welcoming to the aging community.
  • Prime Timers has had a booth at Pride Festival for the past two years. The first year, one member signed up. Last year, we had 20 member sign-ups. Prime Timers changed the way they presented themselves and changed their success rate.

Housing

A show of hands indicated that about half of the focus group participants plan to stay in their current homes as they age. Factors for not staying include high cost of mortgage/taxes, gentrification, and no access to services (trouble finding the right help).

  • Family Eldercare (AGLSS) can help gay elders stay in their homes, but not enough is known about other resources.
  • Fewer than 15% of seniors have long-term insurance.
  • Mueller has options for affordable housing, and the City of Austin operates several facilities. But how do we know where all of these communities are? (And their capacity, application process, etc.) We need more communication about them and a central place to access information.

  • The City of Austin recruits businesses to move here all of the time. They need  to recruit these types of progressive (LGBT-friendly) affordable living communities, too. Possibly give them tax abatements.
  • That’s been tried here, but it died from lack of interest and funding from the gay community.
  • I’d like to explore the “tiny houses” concept – to build a community that is multi-generational and includes a mentoring/bartering system of service sharing.
  • Someone in the Prime Timers recently bought a trailer camp to build such a community.

Transportation

  • We need more public transportation options and they need to be rapid and convenient. Cap Metro is currently gathering input about how to improve its service overall, not just for aging.

Respect and Social Inclusion

  • The State of Texas has a guardianship program, but it is primarily for Medicare/Medicaid clients. Is there a system of advocates to serve seniors with no family members? There are private geriatric care managers who can serve as guardians.
  • Get involved. Come to state agency meetings (e.g., DADS) when they’re passing rules, e.g., to require assisted living facilities to use trained staff who understand language that is open to LGBT community. State agencies usually have stakeholder meetings before rules are proposed.
  • Equality Texas can help mobilize around these issues/opportunities. Advocacy and activism are essential.
  • Because of ageism, the gay senior community is more invisible.
  • We need to put a face on this issue. “Who’s going to be doing this (elder care) for me?”


Community Support and Health Services

  • Access to medical services is important. More mobile services, health devices, and Dell Medical School can help.
  • We also need a direct connection with the Central Health District, more options for easy access to psychologist / psychiatrist services, and assistance re: handling/administering medications.
  • When you consider the example of building an AIDS treatment infrastructure, it means we are capable of doing this.
  • According to AIDS Services of Austin, as of 2015, there are more people over 50 with HIV than under 50. “The clients we deal with are disenfranchised. They’re not elders, but they need help now.”
  • Access to and cost of healthcare is a problem in Austin. There aren’t enough doctor who take Medicare. What is the city doing about this?
  • “A friend of mine can’t even find a primary care doctor because she’s 65.”

Next Steps: What can we do? What can the City of Austin do?

  • Require LGBT training for senior facilities.

  • Provide services for caregivers to be trained and supported.
  • Build a network of volunteers to serve as advocates for hospital patients.
  • Create an ombudsman program for the elderly.
  • Expand our stakeholder group beyond the LGBT community, to include service providers, other support networks. The Anti Defamation League?
  • Advocate with the state medical board and medical schools for better medical/geriatric care. Doctors aren’t prepared to handle the multiple issues seniors deal with.
  • Provide more opportunities for this group to engage and connect.
  • “We’ve been here before, we know we can’t assume “others” are going to take care of these issues.  We also know we can do it – just need to roll up our sleeves and get at it.”
  • Use media (town hall meeting?) to get the word out about our issues and concerns. Use personal stories to humanize gay people. You have to be willing to tell your story…to be visible.

Issues Raised at Subsequent Coalition Meetings and Listening Sessions

  • Rising property values and resulting property taxes are forcing people like me to give up our homes.  The only places we can find to live in Austin are way out in the suburbs where nothing is easy to get to – doctor appointments, grocery stores, drug stores – everything requires a car and I’m getting too old to drive.  I used to know my neighbors and felt comfortable with them – now everyone around me is a stranger and I don’t feel like getting outside anymore.  (This theme has been raised repeatedly)
  • We need to develop an LGBT senior housing complex.  I’m getting too old to live by myself and don’t want to move into a senior living place where I can’t be myself.  Other cities are doing it, why can’t we?
  • There’s nothing to do and nowhere to go anymore.  I’m too old for the bar scene and even if I did go there’s no one there my age.  Most of my friends have either died or moved to be with their family.  The ones that are still around have a hard time getting together because there’s too much traffic during the day and we’re afraid to drive at night.
  • I have got to have some help – where do I go to get it?  I have trouble using computers and that’s where everybody seems to get their information.  I can’t keep up with the changes in my Medicare, my doctor has closed his practice and I don’t know how to find another one, I have a home but can’t find anybody to take care of it.  (another version of this issue is unable to afford computers or internet access)
  • The LGBT community is disorganized, or at least the older ones are. Coming to these meetings is not making any difference – people come and talk about their problems but then they never come back again.  They’re discouraged by the lack of solutions. 

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2. Austin Area Epidemiological Profile

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3. “Strategies to Improve the Health of Older Adults Living with HIV”

Thanks to antiretroviral medications and improvements in care, people with HIV are living into their 50s, 60s, 70s, and beyond. Half of people living with HIV in the U.S. are age 50 or over. While this is a welcome development, growing older with HIV presents unique challenges including:

• the intersection of age-related stigma, HIV stigma, anti-gay stigma, racism, and other forms of prejudice;

• the lack of cultural competency on the part of health care, social service, and elder service providers to serve older adults with HIV;

• sexual health promotion and HIV/STI prevention among older adults;

• social isolation and lack of social support networks;

• comorbidities, including heart disease, diabetes, cancers, depression and cognitive decline;

• substance use, including tobacco use.

Health care providers serving older People Living with HIV (PLWH), and leaders at Ryan White-funded AIDS service organizations (ASOs) and community-based organizations (CBOs) serving this population, can take steps to ensure that older PLWH feel welcome at their institution and receive supportive, affirming services. Five key steps include:

1. Train all staff in the unique needs and experiences of older people living with HIV

2. Screen and treat for comorbidities, depression, and cognitive decline

3. Screen for substance use, including tobacco use, and promote treatment

4. Promote sexual health and HIV/STI prevention with this population

5. Strengthen social support networks and reduce social isolation

Here’s a link to the full document “Strategies to Improve…”

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4. “Maintaining Dignity”

A Survey of LGBT Adults Age 45 and Older

by Angela Houghton,

AARP Research, March 2018

Insights on Concerns and Preferences of Mid-Life and Older LGBT Adults

Three out of four adults age 45 and older who are lesbian, gay, bisexual or transgender say they are concerned about having enough support from family and friends as they age. Many are also worried about how they will be treated in long-term care facilities and want specific LGBT services for older adults.

These were among the findings of a recent national AARP survey, “Maintaining Dignity: Understanding and Responding to the Challenges Facing Older LGBT Americans.”

Partnering Patterns and Support Networks May Affect Future 

Same-sex couples do not “partner” at the same rate by gender. Survey data shows gay men age 45-plus are far more likely to be single (57%) and live alone (46%) than lesbians, 39% of whom are single and 36% live alone. When asked about their social support network, gay men report being less connected than lesbians on every relationship type tested, from friends, to partners, to neighbors. This may put gay men at greater risk of isolation and potentially influences the types of services they will need later in life.

Transgender or gender expansive individuals are also less likely to be connected to sources of social support. Although more than half (53%) of transgender or gender expansive survey respondents have children or grandchildren, this group is least likely to say they consider gay or straight friends, family or neighbors part of their personal support network, putting them at increased risk of isolation now and as they age.

Here’s a link to the full document “Maintaining Dignity

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5. LGBT Older Adults: Facts at a Glance from SageUSA

We look out for you

We make aging better for LGBT people nationwide. How? We show up and speak out for the issues that matter to us. We teach. We answer your calls. We connect—generations, each other, allies. We win. And together, we celebrate.

Here’s a link to SageUSA

SAGE: Advocacy & Services for LGBT Elders

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6. The Forgotten Middle

Shining A Light On “The Forgotten Middle”

by Robert G. Kramer

The National Investment Center for Seniors Housing & Care seeks to draw attention to a large group of seniors whose needs investors and government alike have largely failed to address. This group includes teachers, health care workers, government workers, first responders, and trade union members, among others.

We view this cohort as “the forgotten middle,” seniors with too much wealth to qualify for government assistance, but not enough to afford the private-pay housing and care that many of them will need. The impact this will have on our economy, the health care system, and the health of our seniors will be profound if not addressed. Through their work, Caroline Pearson and coauthors aim not to provide ultimate answers but to start the conversation about how to address the needs of this group.

Here’s a link to the full document “Shining A Light On “The Forgotten Middle”

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7. Is Loneliness a Health Epidemic?

By Eric Klinenberg

New York Times, Feb. 9, 2018

Public-health leaders immediately praised the idea — and for good reason. In recent decades, researchers have discovered that loneliness left untreated is not just psychically painful; it also can have serious medical consequences. Rigorous epidemiological studies have linked loneliness and social isolation to heart disease, cancer, depression, diabetes and suicide. Vivek Murthy, the former United States surgeon general, has written that loneliness and social isolation are “associated with a reduction in life span similar to that caused by smoking 15 cigarettes a day and even greater than that associated with obesity.”

Last month, Britain appointed its first “minister for loneliness,” who is charged with tackling what Prime Minister Theresa May called the “sad reality of modern life.”

But is loneliness, as many political officials and pundits are warning, a growing “health epidemic”?

Here’s a link to the full document Is Loneliness a Health Issue?

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HRSA Analyzes Ryan White Client Population

July 10, 2019

TargetHIV

HRSA Analyzes Growing Ryan White Client Population Over 50 Years Old

Re-blog from HIV.gov (link is external) – Colleagues from HRSA’s HIV/AIDS Bureau (HAB) recently conducted an analysis of the Ryan White HIV/AIDS Program’s client population that is over 50 years old. We caught up with Stacy Cohen, one of the authors of the analysis, “Projected Growth and Needs of Aging People with HIV in HRSA’s Ryan White HIV/AIDS Program,” to learn about highlights of their findings. Stacy is Chief of the Evaluation, Analysis, and Dissemination Branch in HAB’s Division of Policy and Data. She presented the analysis at the 2019 Conference on Retroviruses and Opportunistic Infections.

How many Ryan White HIV/AIDS Program (RWHAP) clients are over 50 years old?

In 2017, 241,857 RWHAP clients were aged 50 years and older, which equates to 45.2% of all RWHAP clients.

Is the proportion of RWHAP clients over 50 years old growing?

Yes. The proportion of clients served by the Ryan White HIV/AIDS Program who are over 50 years old is growing rapidly. Again, clients aged 50 years and older represented 45.2% of total RWHAP clients in 2017, compared to 31.7% in 2010. We project that by 2030, nearly two-thirds of all RWHAP clients will be in that age range.

Proportion of Ryan White Clients 50 and Older, expected to grow from 42% in 2017 to 64% in 2030

Image credit: Gagne S, Klein PW, Matosky M, Mills R, Redwood RC, Cheever LW. Projected Growth and Needs of Aging People Living with HIV in HRSA’s Ryan White HIV/AIDS Program. Poster presented at the 2019 Conference on Retroviruses and Opportunistic Infections. (link is external)

Figure 2. The proportion of RWHAP clients aged 50 and older is projected to double from 2010 (31.7%) to 2030 (64.1%). read more…

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