Trans people and people of color have been quietly erased from national caregiving plan
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Three years after the release of the first comprehensive roadmap to address difficulties faced by family caregivers of older adults and people with disabilities, the Trump administration has quietly erased transgender caregivers and caregivers of color from a list of underserved or hard-to-reach populations, The 19th has exclusively learned.
Dozens of changes were quietly made this year to the National Strategy to Support Family Caregivers, which was first released in 2022 after years of work by government officials and community stakeholders. An objective to “prioritize efforts to advance equity for unserved and underserved populations of caregivers” was removed entirely, as was a section noting that the challenges of family caregiving are not equally distributed.
These changes distort reality, according to Jason Resendez, president and CEO of the National Alliance for Family Caregiving. The alliance represents the interests of family caregivers, or about 59 million Americans. A recent report from the alliance and the AARP showed that not all family caregivers face the same amount or intensity of challenge.
“[Our research] shows that family caregivers span the full spectrum… Yet people of color, women and LGBTQ Americans experience greater negative impacts from caregiving, from financial hardships to worse health outcomes,” Resendez told The 19th in a statement. He also condemned the changes to the report. “Weakening the equity provisions in the National Strategy to Support Family Caregiving ignores this stark reality,” he said.
The changes were made “earlier this year,” according to the Department of Health and Human Services, which did not answer questions about the specific timing of the changes, who made them or why they were made.
But the why is clear: On President Donald Trump’s first day in office, he signed an executive order stating that the government recognizes only two sexes, male and female. That order signaled his administration’s opposition to gender diversity and tasked federal agencies with excluding transgender people from laws that protect against sex discrimination. The order also equates being transgender to an ideology, or belief system, instead of an identity that is protected by state and federal law. That executive order is cited on the first page of the edited version of the report, along with a reference to a second executive order against diversity, equity and inclusion initiatives.
The Recognize, Assist, Include, Support and Engage Family Caregivers Act, or RAISE Family Caregivers Act, was first signed into law by President Trump in 2018. In 2022, the initial report was delivered to Congress. The report consisted of “over 300 specific commitments from federal agencies about what they could do within their existing authorities and programs to better support family caregivers. It also included recommendations for Congress about key legislation that would make a difference for family caregivers,” said Alison Barkoff, the former head of the Administration for Community Living.
The recommendations were developed by the advisory councils created by the law and extensive input from the public, including family caregivers and the people they support.
“One thing that was really important to us was that all caregivers be able to see themselves in the report,” Barkoff said. “By taking out caregivers from certain communities, from taking out the acknowledgement of the unique barriers that people face in different communities face — I think it’s going to create challenges in really meaningfully engaging some types of caregivers that actually face the most barriers and are maybe the least likely to see themselves as caregivers and to seek support.”
This is far from the first time that a federal agency has removed trans people from government-funded health research or a government website. This year, the Centers for Disease Control and Prevention deleted terms like “transgender” and “pregnant person” from agency websites, and the State Department purged references to queer and transgender people from its online resource for LGBTQ+ travelers. The Social Security Administration scrubbed all mentions of trans and intersex people from its resource page about Social Security benefits for LGBTQ+ people. Some webpages were quickly restored, following public outcry and a federal judge’s order.
Early this year, employees at the National Institutes of Health (NIH) were warned to reject grants that mention “women,” “trans” or “diversity.” Another federal judge intervened, ordering the agency that oversees public health research to restore grants that had been cut based on references to gender or racial diversity. However, the Supreme Court ultimately allowed the agency to terminate over $780 million in grants linked to diversity, equity and inclusion initiatives.
Making changes to a report delivered to Congress three years ago is still fairly unusual, however, and no one who The 19th spoke with could recall a similar situation in recent history.
Jace Flatt, an associate professor of health and behavioral sciences at the University of Nevada, Las Vegas, was among many researchers whose grants were cancelled earlier this year. Their research focuses on the needs of LGBTQ older adults and LGBTQ caregivers. They were not surprised by the changes.
“Taking people out doesn’t take away the need,” they told The 19th, adding: “It doesn’t just make this disappear that there are unique concerns and needs for groups of caregivers.”
Flatt said they are concerned about how erasing certain populations and the idea of inequality from government documents and research will impact policy and funding.
“If a certain group isn’t listed as a priority, they don’t just go away,” Flatt said. “It just means we will not have data or information on them, which will create knowledge gaps and limit how we move forward and provide care to all caregivers.”
Orion Rummler contributed reporting.
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