Much needs to be done to ensure older LGBT adults can age with dignity. Many older LGBT adults face health problems or live with chronic health conditions at a time when they are least equipped to endure discrimination and social stigma. Health-care and human-services providers need to be culturally competent to meet the needs of LGBT older adults and to create inclusive, welcoming services. Sexual-orientation and gender-identity (SOGI) data collection is one step providers can use to identify and meet the needs of LGBT consumers.
Unfortunately, SOGI data collection is not routinely done. Government population surveys and research studies need to collect SOGI data as a customary practice to establish reliable baseline data and identify gaps, trends and other issues to be addressed. Even though there is great diversity among LGBT elders, collecting SOGI data can help improve well-documented health disparities, drive funding for research and encourage LGBT-specific programs to close service gaps. While there have been some positive changes in this regard, much more needs to be done to ensure a systematic collection of SOGI data. Advocates need to be vigilant to ensure federal, state and local population-based surveys and policy planning include LGBT individuals.
While there are many reasons to advance SOGI data collection, there are also many challenges. It is not simply a matter of adding questions to a form and tallying the information. Questions are still being tested and validated. There is not yet a standardized way to word questions to elicit accurate responses and have similar data points for comparison. However, there are good models to utilize from those who are pioneering these efforts. For example, individuals are being asked to self-identify their gender and about the preferences for use of pronouns including using a gender-neutral pronoun. (See the National Resource Center on LGBT Aging’s “Inclusive Questions for Older Adults: A Practical Guide to Collecting Data on Sexual Orientation and Gender Identity.”) Consumers have legitimate concerns about confidentiality and discrimination that need to be addressed.
There are a number of federal efforts underway to help advance SOGI data collection. Last fall, the Department of Health and Human Services issued proposed regulations to implement Section 1557 of the Affordable Care Act. Among other things, the regulations would end discrimination in health-care settings based on gender identity. In addition, final rules from the Centers on Medicare and Medicaid Services and the Office of the National Coordinator of Health Information Technology require all Electronic-Health Record systems certified under Stage 3 of Meaningful Use to allow users to record, change and access SOGI data. The ONC rule replaces outdated, offensive terminology and endorses tested “best-practice” SOGI question designs for health-care providers to consider for electronic data-collection.
Successful data-collection implementation also relies on effective staff training. People implementing surveys, applications and other forms need to be trained so they are comfortable asking sensitive questions and that they know how to ask the questions in a respectful way. Asking SOGI information is a critical element for person-centered care planning to ensure the individual’s needs and preferences are met.
Pennsylvania is embarking on a major system change for the delivery of Medicaid-funded long-term services and supports called Community HealthChoices. CHC offers an opportunity to better serve the LGBT community. Among the opportunities, CHC could encourage culturally competent care, SOGI data collection and person-centered planning that includes identifying SOGI-related needs and preferences. Both the Pennsylvania Department of Aging and Department of Human Services’ Office of Long-Term Living have been receptive to advocacy efforts to be more inclusive of the needs of LGBT older adults in the implementation of CHC. Plans are underway with SAGE to begin to train government staff as both department leaders recognize the complexities in successfully implementing these policies. Another area of advocacy in Pennsylvania relates to the Behavioral Risk Factor Surveillance System, a national public health-monitoring system that gathers data annually through state-level surveys. The Pennsylvania Department of Health has included sexual-orientation items in its BRFSS in the past but needs to be encouraged to do so on an ongoing basis.
Reliable data is a critical element in advocating for funding and policy change. Utilizing best practices in staff training in the collection and use of SOGI data, educating LGBT consumers and ensuring SOGI-nondiscrimination policies are followed is essential for successful data-collection implementation. Since the LGBT population is typically undercounted and ultimately underserved, SOGI data collection is an important component to advance LGBT inclusiveness, provider competence, better health outcomes and an improved quality of life for LGBT older adults.
Kathy Cubit is the director of advocacy initiatives for the Center for Advocacy for the Rights and Interests of the Elderly (CARIE). To learn more about CARIE and its services, visit www.carie.org.