Innovation and Hope: A Tale of Two Studies

by Dr. Marcy Adelman. This article originally appeared in the San Francisco Bay Times.

Photo courtesy of On Lok Lifeways.

In November of 2018, the San Francisco Department of Aging and Adult Services (DAAS) released its study, LGBTQ Participation Equity Analysis, which reported what can only be described as profoundly disturbing results.

Despite all the progress that has been accomplished by local LGBTQ senior advocates, the successful implementation of most of the LGBT Aging Policy Task Force’s programs recommendations and a decade and a half of city-supported LGBTQ aging cultural competency training for senior care providers, LGBTQ seniors remain one of the most underserved of the city’s diverse older adult populations. As unsettling as the results of this study are, the report exposed the problem and provided a useful road map of potential solutions.

According to the DAAS study, LGBTQ seniors access aging services within LGBTQ senior serving agencies at a high rate, but are two and a half times less likely than their heterosexual peers to access aging services in non-LGBTQ identified agencies. Clearly, LGBTQ seniors feel more comfortable in programs and services provided by and designed specifically for the LGBTQ community.

The study identified four reasons for this disparity:

• 1 in 5 feel unsafe and/or unwelcome in general aging services;
• Nearly half have mobility limitations;
• 1 in 4 report difficulty accessing transportation;
• 1 in 6 report lower quality social activities.

Much higher rates of living alone by LGBTQ older adult clients and LGBTQ adults with disabilities were also linked to lower participation rates. The majority of LGBTQ older adult clients (61%) live alone compared to 39% in the overall senior client population, and 69% percent of LGBT adults with disabilities (age 18–59) live alone, compared to 53%. Studies have shown that living alone is linked to greater risk for isolation and increased risk of depression, physical health issues, and potential exploitation and abuse.

The DAAS report identified transgender older adults, LGBTQ older adults of color, and LGBTQ adults with disabilities as the most underserved groups within the LGBTQ senior community.

The report recommended continued funding of programs tailored to the unique needs of the LGBTQ community that are located in LGBTQ focused community organizations. The DAAS report indicated that more research needs to be done to understand how to best serve LGBTQ older adults of color, transgender older adults, and LGBTQ adults with disabilities.

The second study picks up where the DAAS study leaves off. Karyn Skultety—Executive Director of Openhouse, San Francisco’s only nonprofit exclusively focused on the health and well-being of LGBTQ older adults—and Grace Li, CEO of On Lok—the country’s pioneer agency in developing and providing Programs of All-Inclusive Care for the Elderly (PACE)—had worked together earlier in their careers on a PACE program at the Institute on Aging.

They became friends and trusted colleagues who shared a commitment to serving and empowering underserved and vulnerable elder communities. When they both became leaders of their respective organization, the service needs of the populations that they served and the trust they had established in their working relationship presented them with a shared mission.

In 2018 they formed a partnership to develop a first of its kind Adult Day Services Program (ADSP) tailored to the needs of LGBTQ older adults. ADSPs provide programs for older adults with physical limitation with opportunities to socialize and help with personal care and nutrition in a safe setting. ADSP services can be a critical support to keep people in their home and in their community.

The partnership reached out to Dr. Jason Flatt of the University of California San Francisco to conduct a needs assessment to help design their program and to determine the most effective ways to serve San Francisco’s growing population of LGBTQ older adults. The study has informed the design of the partnership’s program slated to open in Spring of next year in Openhouse’s new activity center at 75 Laguna in Hayes Valley.

Dr. Flatt reported the results of his study in December 2019. 109 LGBTQ older adults participated in the study (46 participants took part in 6 focus groups and 63 participants completed an online or in-person survey). The focus groups included groups for caregivers; transgender, genderqueer or gender non-binary older adults; LGBTQ older adult persons of color; LGBTQ adults with disabilities; and gay male cisgender and lesbian and bisexual cisgender seniors.

“We knew that one in five LGBTQ older adults are not using aging services because they feel unsafe or unwelcome,” Dr. Flatt informed me for the San Francisco Bay Times. “In our study we found key barriers to accessing care included discrimination from service providers, lack of specialist HIV care, financial barriers, history of receiving lower quality services and difficulty related to finding health, service, and insurance information. Living alone also presents challenges in accessing services. For example, people living alone have difficulty getting to and from health appointments. In total, 54% of participant in our study reported living alone.”

He added, “The most requested services and programs were social activities, adult education, wellness programs and case management. The most requested services by caregivers were in-home support and home care.”

I asked what the key recommendations of the study were. Dr. Flatt replied: “Key recommendations include: An LGBTQ inclusive Adult Day Service Program that offers tailored social programs for all community members, especially transgender and LGBTQ people of color. There is a need for specialized health and case management services for those with HIV/AIDS, such as mental health and substance abuse treatment needs and programs for long term survivors. There is need for services for caregivers, such as education programs and respite care and services for people who develop dementia or Alzheimer’s or need in-home care. There is a need for services that are no fee or at a reduced cost. Affordability is a key issue.”

“These findings provide a strong case for a one stop shop program that integrates case management, LGBTQ identifying staff, use of trauma care approaches, and social activities that reflect the diverse interest and background of the community,” he added.

I asked Li what is unique about this new Adult Day Services Program.

She answered, “Adult Day Services Programs typically offer social programs, meals, and some assistance with care coordination. ADSPs help people manage whatever is happening and support their ability to stay in community. What will be unique to our program at 75 Laguna is the staff and the design of the programs into content areas LGBTQ people are interested in.”

When asked to provide an example of a culturally different content area, she said that “one community might want a class in calligraphy while another might prefer a class in advocacy initiatives …. The content of the services will have more resonance with the LGBTQ people who use the services because the content of the services will have been chosen by LGBTQ seniors themselves.”

As for why On Lok decided to partner with Openhouse, she explained: “For a long time, On Lok’s focus was on strengthening and growing our programs. The original primary focus was all about the PACE model. We developed and grew our programs and strengthened the organization. It took us a while to do that. Once that was accomplished, we began to focus on serving underserved communities. We have established a tradition of working and partnering with vulnerable communities. The second key reason was the good relationship that Karyn and I had from our time working on the PACE program at the Institute on Aging.”

Karyn Skultety is no stranger to creating innovative programs. In 2010 she received the California Association of Adult Day Services Quality Award for Clinical Care for her innovative work enhancing mental health care. She is known for creating programs that effectively serve underrepresented older adults.

She recently told me: “We know that LGBTQ seniors are not using traditional aging programs. With the completion of the needs assessment we now have a better idea why and what to do about it. The success of our project depends on how much and how well we incorporate the input and direct feedback we have received from LGBT seniors themselves.”

The Openhouse/On Lok partnership and ADSP program brings hope that vulnerable LGBTQ older adults and their caregivers will finally have access to the services they need and deserve.

Dr. Marcy Adelman, a psychologist and LGBTQ+ longevity advocate and policy adviser, oversees the Aging in Community column. She serves on the California Commission on Aging, the Governor’s Alzheimer’s Prevention and Preparedness Task Force, the Board of the Alzheimer’s Association of Northern California, and the San Francisco Dignity Fund Oversight and Advisory Committee. She is the Co-Founder of Openhouse, the only San Francisco nonprofit exclusively focused on the health and well-being of LGBTQ+ older adults.