By Dr. Kathleen M. Sullivan–
California is a better place to live as an LGBTQ elder than many states. We have policies enacted into law that protect LGBTQ elders and mandate training for those who provide care and services for older adults. Indeed, Senator Wiener introduced and passed a Bill of Rights for LGBTQ seniors living in nursing homes, assisted living, and residential care facilities (the Attorney General is currently fighting to fully protect the bill of rights, which was watered down by a Third Circuit Court decision in the past year).
While our state has enacted many positive, supportive, and innovative policies, we still don’t have a clear understanding of the LGBTQ community, particularly elders. The stories of our community elders often fade to the ether because we are still a hidden population. That is why the state’s interest and commitment to collecting sexual orientation and gender identity (SOGI) data is so important.
Without fully knowing the community, where we live, what our families look like, and what our needs, access points, and barriers to care and services are, we cannot adequately address issues of equity and justice. As Dr. Marcy Adelman asserts, “Without data there can be no true equality,” and I would add that we will not have true equity or be on the path to justice.
The CDC, under the Biden administration, understands the importance of collecting SOGI data. They state on their website, “Without this information, lesbian, gay, bisexual, and transgender (LGBT) patients and their specific health care needs cannot be identified, the health disparities they experience cannot be addressed, and important health care services may not be delivered.”
For providers or services and care, that is the point. You cannot provide adequate let alone optimal care to your client or patient if you do not know who they are and who is in their support network. Uniformly collecting SOGI data throughout California will allow us to fully understand who resides in our state, the needs of the community, and who is and is not taking advantage of programs and services at the local and state level. Is there, for instance, a verifiable need to link transgender Californians to the CalFresh program? Are queer families receiving full familial protections, and are providers treating our BIPOC and API community members differently due to a combination of discrimination based on race, ethnicity, language, sexual orientation, and gender identity? We have a feeling that the answer to that question is yes, but the data is lacking or spotty.
Collecting SOGI data is an imperative, and I would like to add a small caveat. To collect this data in a sensitive way that respects our community, providers must be given training. If the state does decide to collect SOGI data, I would urge it to partner with local groups who have solid training programs to teach agency staff how to collect the data. Openhouse has a comprehensive Training and Transformation program that works with professional aging service and medical providers to ensure that they know how to ask the questions and how to respond in a respectful and safe manner. Providing this training will help to create a social environment where LGBTQ people feel safe, seen, and accepted.
As part of an evidence-based training program I developed in Seattle, I filmed LGBTQ seniors and asked them to describe what it is like for them when they disclose their sexual orientation or gender identity to providers. Many said it took courage to disclose their sexual orientation or gender identity, and that if the provider dismissed the disclosure or said the dreaded, “Oh, that’s ok; it doesn’t matter to me that you’re LGBTQ,” they felt hurt, shut down, or they felt the need to take care of the provider’s feelings and suppress their own.
Neutral or negative statements have the consequence of immediately marking the space as unsafe and I, like many in our community, simply stop seeing that provider. For others, it can be so traumatizing that they delay or refuse care, leading to both negative physical and mental health outcomes. So, no matter what organization does the training, it is imperative that the state has a plan to provide the skills and behavioral training to those collecting the data.
There used to be a myth that older LGBTQ people do not want to be part of research. San Francisco has proven that wrong, as has the Caring and Aging with Pride research team. It is important to be counted, to fully know the needs of our community—only then can we fully advocate for the policies, services, and programs we need for all LGBTQ Californians to thrive.
Dr. Kathleen M. Sullivan is the Executive Director of Openhouse https://www.openhousesf.org/
Published on April 7, 2022
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