Why Ending the Public Health Emergency Is Not Progress—And What Funders Can Do About It

Image Credit: 愚木混株 cdd20 on unsplash.com

More than one million people in the US have died from COVID-19. The federal government officially ended the public health emergency on May 11, 2023. Even before the PHE status was lifted, some states had already entered the Medicaid “unwinding period,” ending the pandemic-specific policies that allowed continuous coverage for those enrolled. It is estimated that, with this change, 15 million people could lose this essential healthcare coverage, bringing the most harm to people with disabilities, people of color, trans people, and poor people.

It is estimated that, with [the PHE ending], 15 million people could lose this essential healthcare coverage, bringing the most harm to people with disabilities, people of color, trans people, and poor people.

For some, the end of the COVID-19 public health emergency is a relief. Yet, this preference for familiarity and measuring society’s progress based on a yearning for a “return to normalcy” ignores the fact that communities are still struggling in the present—with or without COVID-19 restrictions.

For those of us whose experiences with healthcare has been shaped by immense structural barriers, this feels less like a “return” and more like a reversal. Activist and author Leah Lakshmi Piepzna-Samarasinha calls this “The Great Forgetting.”

To me, this forgetting erases the progress toward safety and greater accessibility won by the brilliance and voices of disabled activists over the last few years. To push back against this erasure of progress, we need to commit to cross-movement solidarity and intersectionality to achieve a future that genuinely embodies disability justice.

This preference for familiarity and measuring society’s progress based on a yearning for a “return to normalcy” ignores the fact that communities are still struggling in the present.

Addressing Ableism in Policy Development

In the early days of 2020, the federal government’s response to the pandemic included announcing a public health emergency. Among other provisions, the PHE provided Medicaid recipients with access to free COVID-19 tests, vaccines, and treatment. These policy changes lowered the barriers to obtaining essential healthcare coverage, which led to an increase of more than 20 million people enrolling in Medicaid since February 2020. Additionally, the Families First Coronavirus Response Act required states to maintain Medicaid coverage until the end of the PHE without burdensome administrative renewal processes.

PHE provisions increased access to basic resources for many, including multiply marginalized individuals. The Medicaid policy changes have equity implications on the future cost of tests and access to vaccines for the poorest communities and families, including many who became newly disabled during the pandemic. Yet, these provisions have ended with no plan for continuing them in the foreseeable future.

Together, the end of PHE and Medicaid unwinding have put people with disabilities, elders, the chronically ill, and immunocompromised people at great risk. The situation is even worse in Medicaid non-expansion states. Some have created Medicaid policies that explicitly deny access to coverage for people seeking gender-affirming care, such as Kentucky, Florida, Arkansas, and Texas. In Florida, the state senate passed a bill that would criminalize or revoke the license of any healthcare professional providing gender-affirming care for youth, including using Medicaid or state dollars.

“For folks who are disabled and trans, this is a moment of feeling the impact of your rights and care just being completely decimated,” shared Rumba Yambu of Intransitive, a nonprofit in Arkansas working to advance trans liberation through movement building. These are attacks aimed at trans and disabled communities, Rumba notes, adding, “and that’s to say nothing about how our core societal laws, norms, and values are built on ableism, racism, and transphobia that keep trans, disabled, and people of color outside of these systems in the first place.”

“To resist state-level attacks on trans health care, we also need to tackle ableism,” says Gabriel Arkles, a trans and disabled lawyer working to advance disability justice. Aldita Gallardo, program officer with the Fund for Trans Generations, agrees and adds that the work of impacted communities is not just to resist but to create and celebrate. Aldita notes, “Arts and culture groups have shown to be life-sustaining spaces for trans communities,” in addition to organizational efforts to “independently organize mutual aid funds, redistribute resources to communities already experiencing houselessness, food insecurity, and lack of care networks.”

Ending Ableism through Cross-Movement Building

A future that embodies disability justice calls for a commitment to cross-movement solidarity and intersectionality. Such a future requires us to recognize that a person’s multiple identities can influence their experiences with privilege and oppression, including access to power and resources. It is the difference between defining progress for some versus progress for all.

Marq Mitchell, the founder of Chainless Change, stated, “We need to shift from thinking about people through a single lens and instead seek to understand their full experience.”

Through his advocacy and supportive services work at Chainless Change, Marq applies his extensive knowledge and lived experience to develop and implement solutions to fully support a diverse population of people with arrest records, including those with a disability. He writes,

We are not a monolith. We need intersectional solutions. There’s no way that we can separate a person’s racial experience, disability, sexuality, or the impact that the criminal legal system has had on them. . . .It is all deeply interconnected. When we create holistic reentry services for justice-involved people with critical unmet needs, especially behavioral health conditions, and chronic illness, the greatest insights and solutions have always come from those receiving support through our programs.

Dom Kelly of Georgia-based New Disabled South echoes that people most impacted by policies should be the ones who inform them. “It is unacceptable, yet common practice, for leaders to make access to care reliant on work requirements, without considering the role of ableism,” shared Dom. “People with disabilities face a range of legal and societal forms of discrimination that have led to higher unemployment rates and rates of poverty compared to nondisabled workers. Our ability to produce should not impact our value as human beings.”

Many disability rights leaders hold this intersectional analysis to be true, and I am one of them. As the director of the Disability Inclusion Fund, an activist and organizer, and a queer disabled Asian American woman, this movement is my political, social, and cultural home. My work at the Fund aligns with disability justice values, which inform whom and how we fund.

The Disability Inclusion Fund is led by people with disabilities, for generations of disabled people—present, past, and future—who have survived in a world that has consistently used much of its resources and power to weaponize and diminish our body-minds. We have always been crystal clear about our role in supporting frontline leaders and working across movements. It is, by nature as well as by design, inclusive.

Through my work with the Fund, I have learned firsthand that cross-movement solidarity can be messy and requires funders to shift their funding priorities. It’s also the only way to arrive at the other side of ableism and win.

I remain unwavering in my belief that we must stop being afraid of venturing into a future simply because it is uncomfortable, unfamiliar, and unclear. It’s time to set those things aside and put our collective trust, power, and resources directly into the communities that have historically held so little of it.

Four Steps Funders Can Take to Invest in Disabled Leaders

Today, organizers in every pocket of this country hold disability justice principles in their aspirations and solutions. They deeply understand what is at stake and are working to protect all—not just some—people.

The pandemic has made the experiences of people with disabilities more visible. While the philanthropic sector has responded, we have yet to act with the bold innovation that we so often claim. Instead, many funders continue to approach this work as they always have, without meeting the disability justice movement where we are and supporting the future being dreamed of and built by movement leaders.

For donors who aren’t sure how to meet us where we are, here are some thoughts:

1. Start by listening and convening. Support a participatory grantmaking structure, bringing together grantee advocates and funders to learn together and ensure grantmaking decisions are informed by community wisdom and priorities.
2. Recognize the threats facing disabled and trans folks living in states that are attacking their very existence and support power building and frontline organizing in these advocacy ecosystems. Funders can support grassroots organizations, including emergent groups, and fund toward long-term resilience, access to civic participation, and mutual aid.
3. Begin funding in unrestricted, trust-filled ways. For funders who are already providing general operating grant dollars, go the next step and support healing and collective rest among your grantees.
4. Make funding to social movements a consistent priority. The issues of disability justice, rights, and inclusion will not come and go with the “end” of the pandemic. Disability communities have always existed and will always exist. This means funders must understand how power is built, shared, and passed on from generation to generation; and recognize the work we make possible when we center solidarity and cross-movement work, such as narrative change and cultural representation.

Today, organizers in every pocket of this country hold disability justice principles in their aspirations and solutions. They deeply understand what is at stake and are working to protect all—not just some—people. I invite donors to join these leaders, learn from them, and fund their work. The future they are building may be unfamiliar, but I guarantee it is defined not just by survival but by joy, liberation, and freedom for all of our futures.