Advocates are outraged that questions about LGBTQ seniors have suddenly been removed from an annual survey that determines services for elderly Americans.
The Department of Health and Human Services (HHS) uses the National Survey of Older Americans Act Participants (NSOAAP) to decide how to allocate federal funding to groups that work with the elderly. For years, LGBTQ groups lobbied to have the survey include questions that would help identify the amount of lesbian, gay, bisexual and transgender elderly people who live in the U.S. and participate in services.
In 2014, questions about sexual orientation and gender identity were added to the survey — helping researchers determine the U.S. is home to about 3 million LGBTQ people over the age of 55.
The Trump administration released a draft of the 2017 survey, with only one noticeable change from previous years: The LGBTQ questions are gone.
“This was a stealth effort to strip LGBT elders out of the survey without anybody noticing,” said Michael Adams, CEO of Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders (SAGE), the nation’s largest network for LGBTQ older adults.
Adams told NBC News that SAGE and other nonprofits worked with the Obama administration to have sexual orientation and gender identity questions added to the survey, but the groups were not notified when the questions were taken out this month.
Instead, Adams said, they discovered LGBTQ seniors had been removed from the survey when a link to the draft was published in the Federal Register last week: “It was the opposite of a warning.”
A number of other national LGBTQ groups — including the Human Rights Campaign, the National Center for Transgender Equality and GLAAD — joined SAGE in assailing the removal of survey questions regarding lesbian, gay, bisexual and transgender elders.
“The Trump Administration is literally attempting to erase the LGBTQ community from the fabric of American history,” GLAAD President and CEO Sarah Kate Ellis said in a statement emailed to NBC News. “Our LGBTQ seniors, many of whom survived the HIV and AIDS epidemic, do not deserve to have the government once again brush them off from obtaining transportation services, caregiver support, and even delivered meals that fit their needs.”
NBC News asked HHS and its Administration for Community Living (ACL) about the change to the survey and received the following explanation from an ACL spokesperson: “The questions have been included in previous ACL surveys as part of a pilot test. These pilot questions are no longer proposed for inclusion in the surveys. The sample size of responses to these questions while piloted has not been sufficient enough to date to allow for reliability and reporting.”
On the ACL website, where the 2017 survey draft is posted, there is a brief note stating, “The 2017 Survey Instrument does contain modifications from the currently approved collection.”
Adding to the confusion, the Federal Register states that no changes were made to the survey — but gives a 60-day period for comments and responses.
The ACL spokesperson said “a clarification for the Federal Register notice will be out soon to highlight the proposed changes.”
The federal government uses the results of the NSOAAP survey to allocate around $2 billion for senior services across the nation. Many major elderly service organizations, such as AARP, offer programs for LGBTQ seniors. But it’s the groups designed solely with LGBTQ elders in mind that likely have the most impact on the community.
Community groups like SAGE, Prime Timers (for older gay and bisexual men) and Old Lesbians Organizing for Change provide social networks for elderly people who live in uniquely high rates of isolation and poverty.
According to a June 2016 report from the legal advocacy firm Justice in Aging, LGBTQ seniors are four times less likely to have children, and tend to live alone with few living family members. They depend heavily on drop-in centers and volunteer home-visit programs, like those offered through SAGE, for social contact and support.
And while the survey helps determine which groups get funding to care for their populations, it also sends a message about who makes up the U.S. elderly population. That, Adams said, helps raise the visibility of LGBTQ seniors who often face discrimination in nursing homes and other care environments.
“We hear over and over about LGBT elders who feel forced to go back into the closet to avoid mistreatment by caregivers and by other seniors,” Adams said. “All of these aging service providers need to hear from this population, that they need to be protected from mistreatment.”
SAGE sponsored a petition directed at the Trump administration, opposing the removal of the questions from the senior survey.
Lujira Cooper, a 70-year-old New Yorker who frequents SAGE’s drop-in centers in the Bronx and Manhattan and volunteers at the “cyber center” where seniors access computers, said she was concerned about a possible “chilling effect” on her community.
“It will force people to hide. To be ashamed. To be fearful. You will have people going back into the closet,” Cooper said. “If we’re not being counted, we become invisible and can’t get the services we need. I work hard to survive, and I deserve to live with some dignity and respect.”
News of the survey change broke on the same morning as the launch of the American Society on Aging conference in Chicago, where more than 3,000 senior services professionals are gathered.
Adams spoke with NBC News while at the conference, and said the survey was already a frequent topic among attendees as groups that serve LGBTQ seniors prepared to take action in response to the changes.
“We really intend to be relentless,” Adams said. “This just cannot be allowed to happen.”