National caregiving strategy faces scrutiny after omission of transgender individuals and caregivers of color

A national strategy intended to bolster support for family caregivers is facing significant criticism following the quiet removal of specific provisions acknowledging the unique challenges faced by transgender people and caregivers of color. The National Strategy to Support Family Caregivers, initially released in 2022 as a comprehensive roadmap, underwent dozens of unannounced revisions this year under the Trump administration.

These amendments notably eliminated sections that specifically mentioned transgender caregivers and caregivers of color as underserved populations, along with an objective dedicated to advancing equity for all marginalized caregiver groups, signaling a concerning shift away from inclusive support.

Critics contend that these alterations fundamentally misrepresent the diverse experiences within the caregiving community, Advocate reports. Jason Resendez, President and CEO of the National Alliance for Family Caregiving, an organization representing approximately 59 million Americans, emphasized the disparity. "Our research clearly indicates that while family caregivers are a diverse group, individuals who are people of color, women, and LGBTQ+ Americans disproportionately encounter more severe negative consequences from caregiving, ranging from financial instability to worsened health outcomes," Resendez stated. He further condemned the changes, asserting that "diluting the equity provisions within the National Strategy to Support Family Caregiving overlooks this undeniable reality."

While the Department of Health and Human Services confirmed the revisions occurred "earlier this year," it declined to provide details regarding their precise timing, authorship, or rationale. However, the motivation appears rooted in specific administrative directives. The edited report explicitly references an executive order signed on President Donald Trump's first day in office, which narrowly defined sex as exclusively male and female. This order was interpreted as a signal of the administration's stance against gender diversity, directing federal agencies to limit protections for transgender individuals under sex discrimination laws and categorizing transgender identity as an ideology rather than a legally recognized identity. A second executive order targeting diversity, equity, and inclusion initiatives is also cited, reinforcing the context for these removals.

The original National Strategy stemmed from the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act, enacted by President Trump in 2018. Its 2022 report to Congress contained over 300 federal agency commitments and legislative recommendations, shaped by advisory councils and extensive public input. Alison Barkoff, former head of the Administration for Community Living, underscored the original intent: "It was paramount that all caregivers could recognize themselves within the report." Barkoff expressed concern that "removing caregivers from specific communities and eliminating the recognition of unique barriers faced by diverse populations will hinder meaningful engagement with those who experience the most significant challenges and may be least likely to identify as caregivers or seek assistance."

This incident is not isolated, echoing previous instances where federal agencies have purged references to transgender and LGBTQ+ individuals from official documents and websites. Earlier this year, similar removals occurred at the Centers for Disease Control and Prevention, the State Department, and the Social Security Administration, some of which were later reversed due to public outcry and judicial intervention. Furthermore, the National Institutes of Health reportedly instructed staff to reject grants featuring terms like "women," "trans," or "diversity," leading to judicial challenges, though the Supreme Court ultimately permitted the termination of over $780 million in diversity, equity, and inclusion-related grants.

The unusual nature of altering a congressionally delivered report three years post-publication was highlighted by sources, who noted a lack of similar precedents. Jace Flatt, an associate professor of health and behavioral sciences at the University of Nevada, Las Vegas, whose research focuses on LGBTQ+ older adults and caregivers, expressed a lack of surprise at the changes, having experienced grant cancellations linked to similar issues. "Removing people from official documents does not eliminate their needs," Flatt affirmed. "It simply ensures that the unique concerns of these caregiver groups are rendered invisible." Flatt voiced profound concern regarding the implications of erasing specific populations and the concept of inequality from governmental research and policy, warning that "if a group is not prioritized, they don't cease to exist; rather, it results in a void of data and information, creating critical knowledge gaps that impede our ability to effectively support all caregivers."