LGBT seniors marked for removal from survey on elder care services

Amanda Holpuch in New York
Advocates say it’s important that the survey, which helps determine the allocation of billions of dollars for vital care services, identify LGBT seniors because they are underserved. Photograph: Terry Vine/Getty Images/Blend Images

The US Department of Health and Human Services has proposed the elimination of data collection for LGBT seniors from an annual survey that helps determine how billions of dollars are allocated for vital care services.

The National Survey of Older Americans Act Participants (NSOAAP) collects information about services including senior centers, home-delivered meals and transportation. The proposed 2017 survey is missing a question about the sexuality of respondents, which has been included since 2014.

“It’s a very bad sign because to strip LGBT older adults out of the survey suggests that the federal government believes that the needs of this elder population do not matter,” Michael Adams, chief executive officer of Services and Advocacy for LGBT Elders (Sage), told the Guardian.

Alongside basic demographic data, NSOAAP respondents give information as detailed as how many servings of meat they eat per day and what level of help they need for activities such as walking, dressing and eating.

Such information is used to measure the impact of government-funded services and is included in a report in the annual budget.

Adams said it was important to identify LGBT seniors in the survey because they are underserved.

“It doesn’t matter, frankly, whether LGBT elders are eating chicken or steak or fish in a senior center,” he said, “but what does matter is: are they eating in a senior center at all? Are they receiving care management services? Are they receiving caregiver support?”

Sage and other groups lobbied the Obama administration to include a question about sexuality in the survey. One was introduced in 2014.

The surveys from that year, 2015 and 2016 asked: “Which of the following best represents how you think of yourself: lesbian or gay; straight, that is, not lesbian or gay; bisexual; something else [which respondents were asked to clarify later]; refused; and don’t know [which respondents were also asked to clarify].”

A notice to the Federal Register dated 13 March 2017 said “no changes” had been made to survey. However, in its draft form it does not include the sexuality question.

The health department’s Administration for Community Living (ACL) said on a link to the draft that it “does contain modifications from the currently approved collection”. The agency is accepting comments on the proposal until 12 May.

The health department did not immediately respond to a request for comment. Adams said he would welcome a dialogue with the White House.

“In recent years, we have made significant progress in including LGBT elders in federally supported elder services and we will be watching very closely for any efforts to roll that back,” he said.

The disappearance of the sexuality question comes after moves by the White House to eliminate two federal statistical programs, igniting fears among senior statisticians that data that does not fit with administration policy could cease to be collected.

Last month, the Trump administration rescinded an Obama-era protection that allowed students unfettered access to bathrooms and locker rooms that corresponded with their gender identity.

On Monday, Sage launched a campaign to get LGBT supporters to respond to the call for public comments on the survey draft. As of Monday afternoon, nearly 700 people had sent letters opposing the planned change.

Senator Patty Murray, a Democrat from Washington, said she was “deeply troubled” by the administration’s plan to stop collecting information on LGBT individuals in the survey.

“There can be no possible justification for this action,” Murray said in a statement. “I have repeatedly urged the Department of Health and Human Services and other federal agencies to include LGBTQ individuals in data collection efforts to help us better understand the challenges they face, and what can be done about it”.

Murray said HHS secretary Tom Price should provide a detailed explanation of why this change was proposed.