Editor’s note: Measures of sexual orientation and gender identity (SOGI) have been added to several federal surveys over the years, but recently the SOGI measure was eliminated from the National Survey of Older Americans Act Participants conducted by the Administration for Community Living. Kathy Greenlee, former US Assistant Secretary for Aging, and administrator of the Administration for Community Living, reacts to this development.
In 1984, a lesbian friend much older than me gave me very specific advice: “You should never come out to your doctor. And if you do, you should make sure they never write it down.” My friend’s formative years were the 1950’s and 60’s, when lesbians could lose their jobs, their families, and their children if ever found out. When she repeatedly asked me if I played softball, she was speaking in a code I was too young to decipher. (I did eventually convey to her I had played both catcher and left field.)
By 2014, 30 years later, nearly everything had changed. One of the most fundamental was the conversation I was having with a national Lesbian, Gay, Bisexual, and Transgender (LGBT) community demanding visibility, documentation, and acknowledgement by health care professionals. I bear personal witness to the magnitude of this shift in the community I have been part of for 37 years.
From 2010 to 2016, I served as one of three co-chairs of the US Department of Health and Human Services (HHS) LGBT Issues Coordinating Committee. Then-HHS Secretary Kathleen Sebelius established the group in response to a request from President Obama for ongoing guidance on how the agency could better support the health of LGBT Americans. For the dozens of us who worked as members of the committee there was a sense of urgency, pride, and steadfast support. The work of the committee was anchored by the leadership of LGBT political and career staff and bolstered by broad participation of committed non-LGBT allies.
In my 25 years in public service, I can point to the work of this ad hoc committee as being some of the most productive, collaborative, and meaningful work I have done. One of the keys to our success was the stakeholders who pushed us, advised us, criticized, and praised us. And from our very first public meeting, advocates speaking on behalf of the health needs of LGBT people had a clear singular primary request: data.
From HHS, LGBT leaders demanded to be counted. And they pushed the department to make that happen. In response to their consistent drumbeat about data, Secretary Sebelius created, funded, and supported an HHS data progression plan addressed at gathering information regarding sexual orientation and gender identity (SOGI). In developing the plan, it became clear that most of the research had been done on questions relating to sexual orientation, including how most appropriately to ask the questions in Spanish. Gender identity questions were another matter altogether. Much less was known about what questions to ask and, as a result, some agencies within HHS moved more quickly to voluntarily incorporate sexual orientation questions before turning to the matter of gender identity.
I was one of the agency leaders who included sexual orientation data collection in a 2014 survey. To be specific, at my direction, the Administration for Community Living (ACL) added questions to the annual National Survey of Older Americans Act Participants. The Administration on Aging, contained within ACL, is responsible for implementing the Older Americans Act program. The Older Americans Act funds programs such as home-delivered and congregate meals, in-home support, caregiver services, health and wellness programs, legal services assistance, long-term care ombudsman services to residents of nursing homes, and elder abuse prevention.
On an annual basis, ACL surveys participants who received Older Americans Act services in the past year. The purpose of the telephone survey is to ascertain if the services were helpful and determine the level of their quality. The survey is very detailed. In the section regarding home-delivered or congregate meals, the surveyors ask whether the older person has had to choose between buying food and paying bills. The older person is asked whether the services have helped them remain living in their own home. ACL asks about the health of the person, inquiring about conditions such as heart disease, diabetes, and stroke. They ask whether the person has seen a doctor and a dentist. And, to gauge the level of an older person’s function, the survey explores issues such as whether the person needs assistance with bathing, dressing, or getting out of bed. This information is essential to administering a quality program that supports the health and independence of older Americans — the true purpose of the law.
In 2011, the Institute of Medicine (IOM), now called the National Academy of Medicine, published a reported titled, “The Health of Gay, Lesbian, Bi-Sexual, and Transgender People: Building a Foundation for Better Understanding.” This historic and comprehensive report addresses barriers to accessing health care, such as stigma, structural barriers, provider knowledge, and training and health insurance. And it specifically calls out the health inequities facing LGBT people. For the purposes of this post, Recommendation 2 of the report is salient:
Data on sexual orientation and gender identity should be collected in federally funded surveys administered by the Department of Health and Human Services and in other relevant federally funded surveys.
For those interested in this report, there is comprehensive discussion of the need for research related to LGBT health.
Including sexual orientation questions in the National Survey of Older Americans Act Participants, beginning in 2014, was good public policy. It was supported by and responsive to the LGBT community, advanced the mission of HHS, strengthened our understanding of the needs of LGBT older adults, and was designed to improve the quality and implementation of Older Americans Act services. Additionally, adding the survey questions was consistent with the state of the science, as articulated in the 2011 IOM report. ACL also added sexual orientation and gender identity questions to the Annual Program Performance Report for the Centers for Independent Living.
Federal agencies are constrained from burdening the American public with ever-increasing requests for information. Thus, to receive approval to include the new sexual orientation questions in the National Survey of Older Americans Act Participants, ACL sought and received permission from the Office of Management and Budget, as required by the Paperwork Reduction Act. As is standard, ACL received a three-year approval. The renewal of the Paperwork Reduction Act approval came up in 2017. The proposed 2017 protocol eliminates the question about sexual orientation.
The Older Americans Act is designed to serve older adults age 60 and over. It is designed for LGBT Americans just the same as everyone else. The questions were not a pilot, they were part of a larger objective, being similarly implemented across the entire Department of Health and Human Services. The goal wasn’t to find a certain number of people. The goal was to find any that responded. The goal was to learn if LGBT people are satisfied with case management, if their families, however defined, receive caregiver support, and if they need help in the morning getting out of bed. That’s all. The agenda is that simple. LGBT older people exist. They have needs. The responsibility of the federal government is to see them and serve them appropriately. And by them, I mean us. I am part of this community and will be eligible for the Older Americans Act services in a few short years.
Collecting Sexual Orientation And Gender Identity Information On Older Americans Is Good Public Policy posted first on http://ift.tt/2lsdBiI
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