Nearly nine in 10 Americans say they know someone who’s gay, but for the 1 to 3 million LGBT elders in the U.S., growing old gay could mean going back into the closet. In part one of this three-part series, KJZZ examines the many hurdles — including stigma, social isolation and financial challenges — facing LGBT elders.

Part 1: Fear Of Long-Term Care

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Bill Sabatino (left) and Dean Taylor share a photo of the two of them before Sabatino's Parkinson's diagnosis.

Challenges Due To Sexual Orientation

Nearly nine in 10 Americans say they know someone who’s gay, but for the 1 million to 3 million LGBT elders in the United States, growing old could mean going back into the closet.

But to understand why some LGBT elders feel this way, it's important to understand where they came from.

"I don't think the word homosexual was in the dictionary, it might have been in medical dictionaries, but I don't think Webster's had it."

The woman who said that appeared in the video produced by the Boulder County Area Agency on Aging is gay. And its part of a project called Project Visibility, which is used to teach professionals and caregivers in the aging industry how to engage with and support LGBT elders.

"And if they are older now then they have lived in a different environment, socially, culturally than is currently in place today," said Sandy Davenport, who is with the Pima Council on Aging.

On this day, she and her co-facilitator are painting a picture of what it was like growing up a lesbian born in 1940.

"So, she’s been seen as mentally ill by American psych society for first 33 year of life. Just for being a lesbian not for any mental illness. Being a lesbian was called mental illness," said Davenport.

Since 2012, the Pima Council on Aging has provided dozens of these trainings to help highlight the very specific needs of LGBT elders.

Project Visibility/Boulder County Area Agency on Aging

Boulder County Area Agency on Aging suggests long-term care facilities use more inclusive language on intake forms.

And how agencies and facilities can adapt all of their policies and practices and intake forms and lobbies and marketing material and train their staff, so staff are aware of what they should be doing in terms of helping people who are LGBT to feel welcome and understood and respected.

LGBT Elders Fear Long-Term Care

Many older LGBT adults are afraid of long-term care facilities, according to a study by AARP. The report found more than 60 percent of LGBT people 45 and older are concerned about being abused or neglected; and three out of four say they’re concerned about having enough support from family and friends as they age.

Rev. David Ragan is the senior vice president at Beatitudes Campus, a retirement community in the Phoenix area that’s, well, out.

"We’ve gone the extra mile to proclaim that," he said.

And they do that by participating in events like the Phoenix Pride Parade, hosting a monthly PFLAG meeting, which is short for Parents and Friends of Lesbians and Gays and advertising in LGBT-friendly publications.

Ragan said they do this "because of the huge fear that is out there of coming into a community like ours because truly not many are proclaiming that everybody is welcome."

And that means some LGBT elders have to ask.

Bill Sabatino, 76,  has Parkinson’s disease. Several months ago, Sabatino and his partner, 68-year-old Dean Taylor, considered moving to an independent living community in Scottsdale.

Kathy Ritchie/KJZZ

Laurie Provost (left) and her partner of 13 years, Kris Kollach. Provost has struggled with her mother's rejection as a result of her coming out.

"I dared ask the question each time, 'We’re a gay couple is that a problem?'" Taylor said. "'No, no. We’d love to have you, we’d love to have you'. All three were very accepting they wanted us, some of them are still calling even after we told them we made our decision. They still want us. That’s pretty embracing."

That wasn’t the case for a married lesbian couple in Missouri who were denied housing at a senior living community in 2016. The reason? According to a lawsuit filed by the couple, the community’s cohabitation policy defines marriage as “the union of one man and one woman, as marriage is understood in the Bible.”

And housing is just one of many issues.

'My Mom Said I Was Going To Hell'

And how agencies and facilities can adapt all of their policies and practices and intake forms and lobbies and marketing material and train their staff, so staff are aware of what they should be doing in terms of helping people who are LGBT to feel welcome and understood and respected.

"I think too in terms of family acceptance, the history of people being written off by their family because they were gay and then now at their retirement age this creates a vulnerability," said Taylor.

And he said, that is not shared by the straight community.

"And yes, I think, as a group of people we’re keenly aware the best thing to do is be as financially independent as you can be," he said.

A goal that's actually easier for LGBT men to achieve than LGBT women, according to a retirement readiness survey.

Laurie Provost is a 54-year-old LGBT advocate. She was 21 when she came out. 

"And my mom said to me that I was dead and buried and going to hell, and I was not her daughter, and I was not part of this family."

And that rejection continues to have lasting consequences. 

"Since my dad died, we’ve had to see the trust documents, and it lists all the other siblings and this is what’s going to happen and the on every page. And every chance she got she put, 'excluding my daughter, Laurie Provost,'" she said.

Provost and her partner of 13 years joke about creating a commune for aging LGBT people — and they might be on to something. LGBT elders are a growing segment of the population and many states, including Arizona, have no laws protecting this already vulnerable population from discrimination.

Part 2: Aging With HIV

HIV Positive Elders Experience Aging At An Accelerated Rate

Kathy Ritchie/KJZZ

Robert Booker survived the HIV epidemic, now he is watching the current pandemic unfold. He sees some similarities in terms of government's response to the virus.

The AIDS epidemic began to make the evening news in the early 1980s. In some instances, the reports not only stoked fears, they also perpetuated stereotypes.

One news report talked about how the lifestyle of some "male homosexuals has triggered an epidemic of a rare form of cancer."

"There was so much misinformation, so little information about the pandemic in the early days and the information that was coming out was very, very negative," said Robert Booker.

Booker was in his early 30s, living in Minneapolis, when he decided to get tested.

"I got a phone call back at my office from my doctor who said, 'I’ve got good news and bad news. The good news is you don’t have diabetes; the bad news is you're HIV positive," said Booker.

That was in 1989, before effective anti-retroviral treatments were available. Besides coping with his own diagnosis, he was watching AIDS decimate entire social circles.

"And so a group of us got together and developed a nonprofit called Arts Over AIDS," he said.

Arts Over AIDS was a response by local artists to combat the fears, and address that misinformation head-on. 

"That you cannot get it from sitting next to someone on a bus, that you cannot get it from kissing someone, that you cannot get it from hugging someone. That was all information that really people didn’t have in the early days and how that information was coming out in the media was often so toxic that people just shut their eyes to it," said Booker.

And in some ways, our eyes are still closed.

HIV Speeds Up The Aging Process

According to the Centers for Disease Control, in 2015, nearly half of all HIV positive Americans were over age 50 —and really, these are first wave survivors.

"We don’t know how it’s going to play out, and we’re all having to change our practice styles," said Dr. Ann Khalsa, the medical director at the McDowell HIV clinic, the largest HIV treatment clinic in the state. "For our patients surviving with it, they’re really becoming a geriatric population in the sense that routinely they’ll come in with half a dozen diagnoses."

Diagnoses like high blood pressure, diabetes, high cholesterol, heart disease, osteoporosis and even mild cognitive impairment.

"There was this great study that looked at the rates of diabetes, kidney disease, bone disease and heart disease by decade — your 40s, your 50, your 60s — and they compared an HIV negative group to a positive group and the rates in the positive group," said Khalsa. "The rates in the positive group were more than twice as high as the negative group and they occurred a decade younger."

The other piece is the cancer rates.

"The cancer rates in our folks happen also higher and sooner," Khalsa said.

Khalsa said HIV is a disease of chronic inflammation — and that’s why they’re seeing these comorbidities, which have to be managed.

"My medication for my patients, they’re lucky, if it’s two or three meds. When they’re over 50, most of them are half a dozen to a dozen different medications for all of these comorbidities and yeah there can be drug interactions and side effects that we have to manage. Its poly pharmacy."

Another issue facing this population, said Khalsa, is isolation.

Booker lost dozens and dozens of close friends and acquaintances from AIDS. And he wasn’t the only one. Both Khalsa and Booker talked about regularly going to funerals during the epidemic.

And family also might not be there. Many older LGBT people were written off because they came out.

Connecting The Dots

Glen Spencer is the executive director of Aunt Rita’s Foundation, an organization that works to ensure everyone knows their HIV status.

Spencer’s latest project is about connecting the dots — using focus groups and surveying some aging service providers, like senior centers and assisted living communities, even geriatricians.

"To assess their preparedness to deal with older HIV positive adults who are more likely to identify in the LGBTQ community and to see what their training is to handle this population and to treat them with the dignity and respect that we all want," said Spencer.

Because Spencer says, some organizations — and even doctors — don’t know how to work with this population. In fact, he says, HIV transmission is still a concern even among professionals.

Spencer hopes to develop a training curriculum to educate and train staff about the growing number of older HIV positive people.  

Part 3: Unique Obstacles For Trans Elders

Jackie Hai/KJZZ

Abby Jensen.

Transgender Elders Face Obstacles Unique To Them

While older lesbian, gay and bisexual people face similar hurdles experienced by older transgender Americans, trans elders are often confronted with circumstances that are unique to them. 

Most people will tell you they know someone who is gay or lesbian — but they might not know someone who is transgender, let alone a trans elder.

Caitlyn Jenner is, by definition, a senior citizen. She’s 69. Her transition from Bruce Jenner to Caitlyn Jenner is, in many ways, the exception in the trans community. But when Jenner was young, she told ABC News's Diane Sawyer that, from a young age, she experienced those feelings of confusion about gender identity.

Those feelings are shared by the people in this story.

"There was a period of time when I was 7 or 8 years where every night when I went to bed I prayed to wake up a girl, which was just really confusing because why would I think that?" said Abby Jensen, 65,

Jensen is the vice president and general counsel of the Southern Arizona Gender Alliance, a transgender advocacy group in Tucson.

Kathy Ritchie/KJZZ

Josef Burwell.

Sixty-year-old Josef Burwell was 55 when he realized "this" had a name. Burwell is ;a physician assistant (PA) and founder of Peace Work Medical, a free clinic for undocumented transgender people in the Phoenix area.

"I have always deeply wished I could be a girl at least since the first grade," said Erica Keppler, a 56-year-old trans advocate. 

Keppler and Jensen were assigned male at birth, meaning the doctor looked at their genitals and determined their sex. Burwell was assigned female, and lived most of her life as a lesbian.

What they all have in common is that they began their transition later in life. But to do so in your 40s or 50s "is to risk everything that you’ve built up through your life," said Burwell. "You just put it out on the line. That’s how important this is and how absolutely necessary this is. You risk losing family members."

Which was Keppler’s experience with her brother.

"When I first told him that I was going to go through gender transition, he said he would be supportive. Then over the years he became colder, more distant and more hostile. He would never fully explain why he became more colder more distant and more hostile.

She believes the reason for his change in attitude has to do with her being transgender. 

And while Abby Jensen’s mother embraced her journey, saying do what you need to do, her brother didn't feel the same way.

"My older brother on the other hand shook my hand and said good luck and that was in 2006, November and haven’t spoken to him since."

Trans Elders At A Financial Disadvantage

Despite the challenges, even the heartache, all three have experienced as they transitioned, they would tell you they’re fortunate. That’s because many in the trans community struggle, especially people of color.

When asked how, Jensen said you have to look at the financial impact of the pervasive discrimination in employment and housing all kinds of places.

Jackie Hai/KJZZ

Erica Keppler.

According to SAGE, an LGBT elder advocacy group, “the economic and personal impact of such prejudice can accumulate over a lifetime to impact earnings, savings and social security.”

The fact is, you need money to age, especially if you don’t family support like Keppler.

"And that does scare me, that worries me. It isn’t necessarily being alone so much as being helpless. At this point in time, I don’t really know what I can do about that except to save money," said Keppler.

Health Care Hurdles

While some improvements have been made over the years when, finding culturally and clinically competent providers who get the needs of the trans community is tough.

But Josef Burwell is sowing the seeds of change. It’s a Sunday morning at Peace Work Medical. Burwell and his team of volunteer PA students are getting ready to treat patients. Nico DeLeon is first-year student working under Burwell.

"I do not understand what it is like to be someone who does not feel correct in the body they were born in and feels the need to become their truer self," said DeLeon. "I don’t understand what its like to have people in room stare at me for whatever reason just these little things that I very much take for granted, I suppose."

And that’s why he and many of the others are here. 

"I think they’re changing the face of medicine in Phoenix," said Burwell. "I hope they stay around Phoenix but if they go somewhere else and take these values and characteristics elsewhere, that’s OK. I just hope they stay here because we have so many transgender people in greater Phoenix, Maricopa County, who can’t find qualified health care."

This population still struggles with indifference, mocking or abusive language and in some cases, refusal of care, for even non-transgender conditions, like a broken arm. 

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