In emergency updates, American Sign Language interpreters are crucial to the safety of Deaf people—close to a million of whom live in the Los Angeles area alone. They’ve also become the latest target of right-wing online influencers like Turning Point USA head Charlie Kirk, who offered a very obnoxious take on his eponymous Charlie Kirk Show last Wednesday, calling live ASL interpretation a “distraction” in the context of the fires; other right-wing media figures have piled on, adding ASL to the increasingly preposterous list of “woke” practices somehow related to the fires.

But the Americans with Disabilities Act protects the right to equal information, as National Association of the Deaf board president Lisa M. Rose wrote in a response to Kirk.

“Sign language interpreters provide crucial visual context, emotional nuance, and cultural mediation that captions alone cannot convey,” Rose wrote. “This real-time interpretation can be life-saving during emergencies, when clear and immediate understanding is vital.”

Kirk was far from the only right-winger to attack ASL interpreters: “critical race theory” profiteer Christopher Rufo said on X that no “wild human gesticulators [are] necessary,” referring to a video of a Los Angeles County emergency management news conference; Richard Hanania said ADA requirements to have ASL interpretation “have led to a nightmare.”

Bad takes on ASL interpreters and their purpose are not new, but given the current hold of anti-DEI activists on the Republican Party, and the speed with which other social and news media organizations have capitulated to Trump on advertising, fact-checking, and diversity initiatives, those attacks may soon lead to fewer ASL interpreters on emergency news broadcasts. There are already gaps in meeting that requirement, and not just from the right—in 2020, for instance, a judge had to force Andrew Cuomo to include an ASL interpreter in his lauded Covid briefings.

Kirk and Rufo obviously know little about ASL if they’re criticizing it for being expressive—which it’s supposed to be. As Arika Okrent wrote in a 2012 Atlantic article “signers are animated not because they are bubbly and energetic, but because sign language uses face and body movements as part of its grammar.” What’s for certain is that interpretation is vital, not annoying—the exact opposite of Kirk, Rufo, and Hanania’s takes.

Los Angeles has been hit with its worst-ever wildfires, which continue to blaze, already claiming at least ten lives and devastating air quality—just as a spate of mask bans have been enacted or proposed around the country, including in LA itself.

Since authorities began issuing evacuation orders across the area, Joaquín Beltrán, a community organizer and software engineer, has been visiting centers to hand out masks. Beltrán still takes Covid-19 seriously, as do organizers with Mask Bloc LA, a mutual aid group that Beltrán linked up with, which has also been visiting evacuation shelters to hand out N95 and KN95 masks.

Personally handed out well over 1,000 respirators here at the Pasadena Convention Center to every person awake. @PasadenaGov @lapublichealth @RedCross, the people want to be protected from hazardous wildfire smoke. Please set up a system and supply respirators immediately. pic.twitter.com/C6OFzytjpr

— Joaquín Beltrán Free Palestine (@joaquinlife) January 8, 2025

For people involved in Covid mask organizing, handing out masks serves two purposes: protection from harmful wildfire smog and against infectious diseases. I spoke to Beltrán about his experience working to keep his community safe, even as this dual-purpose public health tool has become an increasingly villainized symbol of the culture wars.

What led you to get involved in mask organizing?

In March of 2020, I realized that the government was not coming to save us, that we needed to save ourselves. I started a fundraiser right away and distributed respirators, KN95s, to the county hospitals here. I [looked at] the numbers in Italy, and I saw the same growth rate here in the United States, and knew it was going to be disastrous for all our communities. We’re all connected in this. By making sure that other people are safe, we are safer as well.

Why was it such a priority to bring masks to evacuation centers?

Earlier this week, they were evacuating seniors from a care facility, with the fire raging, and it just broke my heart. I have masks. I’m like, ‘Okay, I need to do something.” The masks I had, I took them to All Saints Church [in Pasadena].

I was also aware that the Pasadena Convention Center was receiving people, so I went there. I had given out all the masks I had already. So I’m asking them, “Do you guys have respirators?” The Red Cross didn’t. The city didn’t. I asked the police, they didn’t have any. It was past eleven, so places like Home Depot that would sell them were closed. I made a video saying that we needed respirators to pass out to people. A lot of people are sending messages, and one of them was from Mask Bloc LA; they had enough where I didn’t have to go all over the city to pick up the other ones too, well over a thousand masks.

Masks protect you from any [airborne] disease, and there’s flu that’s increasing as well. To add to that, the toxic dangers of particulate matter from the wildfire smoke are incredibly harmful to everybody, but in particular, everyone who’s already at high risk [for respiratory complications].

What have been some of the reactions you’ve faced when handing out masks?

They were so grateful. A lot of the seniors didn’t know how to put them on, so I had to. It’s a devastating event. The government did not have the supplies, and instead, it was provided and distributed just by community members. It shows how incredible our community members are, and how quickly they’ll step up to help our neighbors.

Do you hope that these wildfires can convince people that a mask ban in Los Angeles, which Mayor Karen Bass has raised as a possibility, would be a bad idea?

I think we’re in the state of emergency we’re in right now because our government is focused on ridiculous ideas like mask bans to target people who are protesting against the genocide of the people of Palestine. This is a wake-up call that they need to not be focused on things that harm members of the community, like mask bans, and instead on resources that protect us, like having more firefighters and more water [supply] to fight fires, and providing masks.

This interview has been condensed and edited for clarity. To seek masks from Mask Block LA, find them on X .

Project 2025’s stance on the Department of Education is clear: “Federal education policy should be limited and, ultimately, the federal Department of Education should be eliminated.” 

Donald Trump’s imminent presidency has raised concerns among disabled advocates, kids, their parents, and others about the federal government’s role in making sure disabled students get an equitable education. Not that it’s clear how a Trump DOE would dismantle itself, or whether enough Republicans in Congress would agree to risk their seats over such a proposal.

“There is a growing concern within the education field,” says Fred Buglione of All In for Inclusive Education, which helps train districts and provides individual consultations on how to support disabled students, of “how deep the cuts might be, what that means for the field, and at the end of the day, what that means for children”—even if the Trump administration, Buglione says, seems to only have “concepts of a plan” of how that would happen.

Equitable education for disabled people is inherently part of the current of diversity, equity, and inclusion efforts that Trump and allies like Texas Gov. Greg Abbott, who himself has a disability, seem to oppose. (This past October, Texas cut $600 million in Medicaid funding for disability education services.) The federal Department of Education regularly gives important guidance to state departments of education, says Michael Gilberg, an autistic attorney who focuses on special education law.

“States have a patchwork of laws, and things are enforced differently,” Gilberg said. “You need the federal government to oversee and make sure all the states are doing the same”—in other words, to ensure through funding and oversight that disabled kids in Massachusetts and Oklahoma receive the same access to education.

“If you take away those federal funds, you’re taking away qualified teachers…it would be a domino effect.”

The Department currently funds, supports, or regulates countless aspects of disabled kids’ education in public schools, particularly those who receive accommodations under Section 504 of the Rehabilitation Act and the Individuals with Disabilities Education Act. Those acts protect all students’ right to disability accommodations known as 504 plans and Individualized Education Plans, respectively—a right 8.4 million students count on—and, in the case of the IDEA Act, fund up to 40 percent of the costs.

“If you take away those federal funds, you’re taking away qualified teachers,” said Kyla Bishop, an attorney with Disability Rights Arkansas. “It would be a domino effect.”

In rural areas of the state, Bishop said, meeting the needs of students with disabilities is already a challenge—some districts can already only afford a four-day school week, and face shortages of staff like occupational therapists and mental health providers.

During his previous administration, Trump and then–Secretary of Education Betsy DeVos touted school vouchers, which transfer funding from public to private schools. Voucher programs, which do not have any formal federal oversight, are perhaps a key example of the costs and dangers of leaving disability education to the states. They may seem promising to parents, but parents who use vouchers to attend private schools forfeit their kids’ right to an IEP, which also protects students’ rights to be educated in the least restrictive environment. A child who is autistic can be isolated in a classroom, alone, if a private school decides that is what it wants to do; a private school doesn’t have to provide speech therapy if it doesn’t want to, or could keep kids from participating in gym class because the school doesn’t want to modify activities to be accessible. The list goes on.

“When a voucher is used for a school that does not provide sufficient services, parents have no recourse,” states a 2018 report from the National Council on Disability. “If a private school fails to meet a student’s needs, the student will not be entitled to compensatory services.”

Cheryl Theis, of the Disability Rights Education and Defense Fund, said that many families who choose school vouchers for their kids with disabilities are encouraged to believe it will help them succeed. “It has backfired for so many families who feel like they were promised something better and different, only to realize that their children have essentially been dumped in cottage industries.”

Bishop, of Disability Rights Arkansas, is critical of her state’s school voucher law, which she says pulls money from public schools that are under law required to meet the needs of students with disabilities.

“You can’t keep taking money away and then expect a better result,” Bishop said. “That doesn’t make sense.”

For Elena Hung, the executive director of Little Lobbyists, which advocates for children who have complex medical needs, her 10-year-old daughter Xiomara’s individualized education plan is the only way she can attend school at all: it allows Xiomara, who has had a tracheostomy and requires a feeding tube, to have a nurse with her on the school bus and in the classroom.

“Not just for my daughter, but for many children with medical needs, if they don’t have a dedicated nurse who’s trained in their care, then they can’t go to school, because it’s just not safe,” Hung said. Hung is concerned that a gutted DOE may lead to more kids with complex medical needs being institutionalized, as many working parents cannot afford around-the-clock care.

Gilberg, the special education attorney, says that “getting rid of the federal Department of Education will really curb IDEA and 504 enforcement, which ultimately leads to more litigation, which ultimately [would lead to] clogging of the courts.”

An increased reliance on litigation would also drive inequities: many parents cannot afford a lawyer, or may not know where to turn to pursue lawsuits. Nationwide, close to 100 Parent Training and Information Centers, which can help parents understand the rights their children with disabilities have in public schools, are also funded through the Department of Education; with the DOE dismantled, many would likely cease to exist if funding falls by the wayside.

Project 2025 does not directly attack federal funding for students with disabilities, as it does with abortion rights. Instead, it suggests that IDEA funds “should be converted into a no-strings formula block grant targeted at students with disabilities and distributed directly to local education agencies.”

To Tammy Kolbe, a principal investigator at the American Institutes for Research, that claim is incredibly vague. “It remains uncertain what they might do with respect to both the level of appropriations for IDEA and the formula that they might use to distribute those funds to states and districts,” Kolbe said.

IDEA funding is already unequal; one report Kolbe worked on highlighted differences in funding for students receiving disability education services via its grants. In 2020, the formulas used to calculate funding meant that Wyoming received about $2,826 in IDEA funds per student, whereas Nevada received $1,384 per student—less than half.

The Department of Education is also a crucial source of data about education and disability, including how disabled students of color are treated—data used, for example, to order districts to take action if Black disabled youth are suspended much more often than white ones.

When such figures “are significantly disproportionate for three years or more, then [districts] have to dedicate 15 percent of their funds to a corrective action–type program to address those issues and investigate why it’s happening,” said Theis.

“We need to prepare state elected [officials] for the fights that are going to be ahead.”

A lack of federal data would prevent that kind of corrective action, even if the funds remain. Even if the collection of data persists, Project 2025’s dictates against “critical race theory” in civil rights enforcement, including in education, indicate that the Trump Department of Education may not take action against the discrimination that students of color, particularly disabled ones, face.

New Disabled South CEO Dom Kelly, who lives with cerebral palsy, says that data from the Department of Education leads to more innovation, which helps disabled kids succeed.

“I also worry that lack of data collection will impact federal grants that fund research that directly impacts some disabled students,” Kelly said, including research on “assistive technologies in the classroom.”

While the possibility of the Department of Education dissipating is worrisome, it will not happen overnight, and it’s not guaranteed to fall.

“Anything that happens in the federal government takes time, planning and strategy,” said Jill Jacobs, the executive director of the National Association of Councils on Developmental Disabilities. Before coming to NACDD, Jacobs was a commissioner in the Department of Health and Human Services.

Kelly also says organizers need to turn to state-level officials to work together, if, as many expect, Trump’s education department leaves key issues to states.

“We need to prepare state elected [officials] for the fights that are going to be ahead with [Georgia] Gov. Brian Kemp or Greg Abbott, or whoever, to be able to make sure that there’s oversight [and] that there’s funding,” Kelly said.

Hung, of Little Lobbyists, encourages parents to form a united front with the teachers and other school staff who already help guard kids’ access to education.

“I would advise families to work closely with their schools. There is a partnership there that should be leveraged,” Hung said. “Schools should be just as concerned about this as families are.”

Los Angeles has been hit with its worst-ever wildfires, which continue to blaze, already claiming at least ten lives and devastating air quality—just as a spate of mask bans have been enacted or proposed around the country, including in LA itself.

Since authorities began issuing evacuation orders across the area, Joaquín Beltrán, a community organizer and software engineer, has been visiting centers to hand out masks. Beltrán still takes Covid-19 seriously, as do organizers with Mask Bloc LA, a mutual aid group that Beltrán linked up with, which has also been visiting evacuation shelters to hand out N95 and KN95 masks.

Personally handed out well over 1,000 respirators here at the Pasadena Convention Center to every person awake. @PasadenaGov @lapublichealth @RedCross, the people want to be protected from hazardous wildfire smoke. Please set up a system and supply respirators immediately. pic.twitter.com/C6OFzytjpr

— Joaquín Beltrán Free Palestine (@joaquinlife) January 8, 2025

For people involved in Covid mask organizing, handing out masks serves two purposes: protection from harmful wildfire smog and against infectious diseases. I spoke to Beltrán about his experience working to keep his community safe, even as this dual-purpose public health tool has become an increasingly villainized symbol of the culture wars.

What led you to get involved in mask organizing?

In March of 2020, I realized that the government was not coming to save us, that we needed to save ourselves. I started a fundraiser right away and distributed respirators, KN95s, to the county hospitals here. I [looked at] the numbers in Italy, and I saw the same growth rate here in the United States, and knew it was going to be disastrous for all our communities. We’re all connected in this. By making sure that other people are safe, we are safer as well.

Why was it such a priority to bring masks to evacuation centers?

Earlier this week, they were evacuating seniors from a care facility, with the fire raging, and it just broke my heart. I have masks. I’m like, ‘Okay, I need to do something.” The masks I had, I took them to All Saints Church [in Pasadena].

I was also aware that the Pasadena Convention Center was receiving people, so I went there. I had given out all the masks I had already. So I’m asking them, “Do you guys have respirators?” The Red Cross didn’t. The city didn’t. I asked the police, they didn’t have any. It was past eleven, so places like Home Depot that would sell them were closed. I made a video saying that we needed respirators to pass out to people. A lot of people are sending messages, and one of them was from Mask Bloc LA; they had enough where I didn’t have to go all over the city to pick up the other ones too, well over a thousand masks.

Masks protect you from any [airborne] disease, and there’s flu that’s increasing as well. To add to that, the toxic dangers of particulate matter from the wildfire smoke are incredibly harmful to everybody, but in particular, everyone who’s already at high risk [for respiratory complications].

What have been some of the reactions you’ve faced when handing out masks?

They were so grateful. A lot of the seniors didn’t know how to put them on, so I had to. It’s a devastating event. The government did not have the supplies, and instead, it was provided and distributed just by community members. It shows how incredible our community members are, and how quickly they’ll step up to help our neighbors.

Do you hope that these wildfires can convince people that a mask ban in Los Angeles, which Mayor Karen Bass has raised as a possibility, would be a bad idea?

I think we’re in the state of emergency we’re in right now because our government is focused on ridiculous ideas like mask bans to target people who are protesting against the genocide of the people of Palestine. This is a wake-up call that they need to not be focused on things that harm members of the community, like mask bans, and instead on resources that protect us, like having more firefighters and more water [supply] to fight fires, and providing masks.

This interview has been condensed and edited for clarity. To seek masks from Mask Block LA, find them on X .

The Consumer Financial Protection Bureau finalized a rule on Tuesday that will bar medical debt from being included in credit scores. Medical debt impacts people’s ability to qualify for home mortgages, car loans, and even renting. The rule will go into effect 60 days after it has been published in the Federal Registrar, which has not happened yet.

The rule was proposed in June, and there was concern after Donald Trump’s victory in the 2024 presidential election that the Biden administration would not have enough time to finalize it. Such anxieties have been especially acute considering long-held conservative antipathy for the CFPB. Elon Musk has been especially vocal about his desire get rid of the CFPB.

“Today, we are building on this meaningful work by announcing an unprecedented final rule that will make it so medical debt is no longer included in your credit score,” Vice President Kamala Harris said in a statement. “This will be life-changing for millions of families, making it easier for them to be approved for a car loan, a home loan, or a small-business loan.”

The Trump administration could potentially reverse this move through its own rulemaking process. Collection companies are all but certain to oppose the finalized rule. As the CFPB notes, its rule “will help end the practice of using the credit reporting system to coerce payment of bills regardless of their accuracy.” In other words, it could slow down collections for medical debt, which people may not want to pay off if it is incorrect.

Disabled adults are disproportionately impacted by medical debt. According to the Centers for Disease Control and Prevention, around one in five families with at least one disabled family member have medical debt, versus one in 10 families without a disabled family member. Given that disabled people are two times more likely to live below the poverty level than non-disabled people, it can be much harder for them to pay off debt. In addition, Black people are 2.6 times more likely to have medical debt than white people.

Some states, including California, already have laws that prevent medical debt from being reflected in credit scores. In addition, in July 2022, Equifax, Experian, and TransUnion announced that all paid-off medical debt would be excluded from consumer credit reports. This led to the percentage of people with medical debt reflected in their credit scores dropping from over 15 percent to 5 percent.

“I know that our historic rule will help more Americans save money, build wealth, and thrive,” Harris concluded in her statement.

The Consumer Financial Protection Bureau finalized a rule on Tuesday that will bar medical debt from being included in credit scores. Medical debt impacts people’s ability to qualify for home mortgages, car loans, and even renting. The rule will go into effect 60 days after it has been published in the Federal Registrar, which has not happened yet.

The rule was proposed in June, and there was concern after Donald Trump’s victory in the 2024 presidential election that the Biden administration would not have enough time to finalize it. Such anxieties have been especially acute considering long-held conservative antipathy for the CFPB. Elon Musk has been especially vocal about his desire get rid of the CFPB.

“Today, we are building on this meaningful work by announcing an unprecedented final rule that will make it so medical debt is no longer included in your credit score,” Vice President Kamala Harris said in a statement. “This will be life-changing for millions of families, making it easier for them to be approved for a car loan, a home loan, or a small-business loan.”

The Trump administration could potentially reverse this move through its own rulemaking process. Collection companies are all but certain to oppose the finalized rule. As the CFPB notes, its rule “will help end the practice of using the credit reporting system to coerce payment of bills regardless of their accuracy.” In other words, it could slow down collections for medical debt, which people may not want to pay off if it is incorrect.

Disabled adults are disproportionately impacted by medical debt. According to the Centers for Disease Control and Prevention, around one in five families with at least one disabled family member have medical debt, versus one in 10 families without a disabled family member. Given that disabled people are two times more likely to live below the poverty level than non-disabled people, it can be much harder for them to pay off debt. In addition, Black people are 2.6 times more likely to have medical debt than white people.

Some states, including California, already have laws that prevent medical debt from being reflected in credit scores. In addition, in July 2022, Equifax, Experian, and TransUnion announced that all paid-off medical debt would be excluded from consumer credit reports. This led to the percentage of people with medical debt reflected in their credit scores dropping from over 15 percent to 5 percent.

“I know that our historic rule will help more Americans save money, build wealth, and thrive,” Harris concluded in her statement.

Elon Musk’s calls for a so-called “efficient” US government—including wanting to end the already endangered right to work from home, a disability accommodation for many—are less surprising when you view him as a techno-eugenicist.

The eugenicists of the early 20th century used medical violence like forced hysterectomies in a pseudoscientific campaign to prevent “inferior” immigrants from entering the US, and push certain groups —especially disabled, non-white, and otherwise marginalized people—out of the gene pool.

Big Tech successors like Musk and PayPal billionaire-turned-arms dealer Peter Thiel have overtly promoted fraudulent race science, with Musk amplifying users on X who argue that people of European descent are biologically superior. In response to another user’s deleted post suggesting that students at historically Black institutions have lower IQs, Musk posted, “It will take an airplane crashing and killing hundreds of people for them to change this crazy policy of DIE”—diversity, equity, and inclusion, misspelled. In 2016, Thiel buddied up to a prominent white nationalist, and, the same year, was said by a Stanford dorm-mate to have complimented South Africa’s “economically sound” system of racial apartheid.

Data was “deployed by eugenic researchers…to not just track and surveil the poor, [but] to argue for their segregation.”

In her new book Predatory Data, from the University of California Press, University of Illinois Urbana-Champaign information sciences and media studies professor Anita Say Chan looks at the history and current use of data in devaluing human beings along eugenicist lines.

I spoke to Chan about the history of predatory data in the United States, why the moral and ethical implications of data collection remain a crucial subject, and how we can fight against its misuse.

Can you share a bit about how data has been used, historically, to cast many disabled people, immigrants, and people of color as being part of the “undeserving poor”—and how that continues today?

For large parts of history, poverty was seen as a largely inevitable phenomenon brought about from a general condition of scarcity. While a “soft” version of poverty as individual failure might have attributed poverty to laziness or immoral behavior, eugenics introduced a “harder” version of a biologically determined undeserving poor as a central object of data collection.

Eugenic researchers labored, and grew a global disinformation movement, across the late nineteenth and early twentieth centuries to demonstrate poverty not as the result of scarcity or structural exploitations, as labor reformers then argued, but as the result of inherited deficiencies that directly limited intellectual potential, encoded harmful and immoral personal proclivities, and circumscribed economic achievement. In the US, varied datafication methods—from IQ exams and immigrant literacy tests, to criminal databases, biometric archives—were deployed by eugenic researchers in an effort to not just track and surveil the poor, and to argue for their segregation from so-called “fit” populations, but to collect data that eugenicists insisted would prove the higher incidences of moral, physical and mental “unfitness” among the poor.

Our contemporary datafication systems continue to do this today—not only by allowing their growth to be fueled by the expansion of online platforms and social media systems that minimize protections for minoritized users, but by enabling the amplification of political violence against minorities in the interest of protecting their profits.

The incoming Trump administration is very anti-immigrant—not that this country has ever been purely pro-immigration. To go back about a century, how did interpretations of intelligence lead to a dramatic increase in rejections at Ellis Island?

The Immigration Act of 1924 was a historic gain [for eugenicists] that is remembered for imposing a severe national quota system designed to keep non-Anglo-European immigrants out of the United States. Its passage allowed immigration from northern Europe to increase significantly, while Jewish immigration fell from 190,000 in 1920 to 7,000 in 1926, with immigration from Asia—already severely restricted from the Chinese Exclusion Acts of the 1870s onward—almost completely cut off until the 1950s. But the historic passage of the 1924 act came as a result of direct lobbying from US eugenicists.

Eugenics introduced a “harder” concept of a biologically determined,
undeserving poor as a central object of data collection.

The US psychologist and eugenicist Henry Goddard played an especially critical role. He first introduced the term “moron” in medicine to establish a multi-tiered classification for the “feeble-minded”. With fellow eugenicists, he strove to prove low intelligence as the primary indicator of deficient self-control, criminality, alcoholism, laziness, prostitution, and even political dissent. He advocated intelligence testing for all US immigrants to exclude so-called “unfit” arrivals. In 1913 he began an infamous study on immigrant intelligence that included as assessment questions that he delivered in English to respondents: “What is Crisco?”—the US-made cooking product introduced just two years earlier as an alternative to butter, and “Who is Christy Mathewson?”—an American [baseball] player.

Based on responses to such questions, he classified over 80 percent of his respondents as feebleminded—confirming, as Goddard wrote when the study was published in 1917, “that a surprisingly large percentage of immigrants are of relatively low mentality.” Goddard ended the article by proudly sharing the dramatic expansion in deportations of mentally defective populations from Ellis Island—by 350 percent and 570 percent in 1913 and 1914, respectively—that his study had triggered.

Data has also been used in imagining what a future can look like, such as with the Futurama exhibit at the New York World’s Fair in 1939. How did America’s embrace of eugenics lead to a smart city design being envisioned with only non-disabled people in mind?

The Futurama was General Motors’ celebrated “smart city” exhibit at the 1939 World’s Fair. It was also a homage to how streamlining principles, channeled into urban planning and design, could yield enthusiasm and awe for eugenic utopias. This was the sublime perfection that could scale when designers and engineers controlled growth and design to ensure perfection—not only over how the future city functioned, but over the eugenic social future it helped evolve. It’s no accident then, that a 1939 Life Magazine article reveled in the unabashedly fit, tanned, heteronormative, ableist masculinity standardized at the center of the streamlined society when it covered the Futurama.

This was a future utopia where the benefits of intelligent planning and evolutionary progress were driven by eradication of problems of excess, uncertainty, and wasteful heterogeneity—not only in technology but in society at scale. And it drew in an unprecedented audience of some forty-four million visitors—the most of any World’s Fair until the time—with such a promise.

Even during the rise of the eugenics movement in North America, data has also been used as a tool of resistance. Can you talk about the pioneering work at Chicago’s Hull House, and how that can serve as a model today? 

Although it’s largely overlooked today, Hull House was broadly recognized at the turn of the century for its leadership in the nineteenth-century urban settlement movement that helped grow more than 400 other settlements in the US, and that played a key role in the passage of key legal reforms from the eight-hour workday, the minimum wage, and the elimination of child labor and workplace safety laws. It was also committed to building research communities and to advancing community-centered data methods.

Intelligence tests for would-be immigrants demanded answers about Crisco—then a brand-new product—and baseball star Christy Mathewson.

Volumes it published, and that were written by women and immigrant authors, like the Hull House Maps & Papers of 1895, not only documented the impacts of sweatshop labor on the largely immigrant families of Chicago’s West Side, but quickly placed them at the forefront of new social science techniques by showcasing the use of innovative data methods from social surveys to color-coded neighborhood wage maps. Such methods later helped establish standard data collection methods for social science professions. Its approach helped to shift the public’s understanding of poverty by emphasizing poverty’s roots in labor exploitation, and political disenfranchisement.

But Hull House’s unique success was importantly grounded in its commitment to developing social coalitions, and its numerous collaborations with labor associations, civic groups, working families and immigrants where it was based in Chicago’s 19th Ward. It’s a reminder of not only of what can be achieved when predatory forms of eugenic data practice are explicitly refused but of the power of alternative data traditions that have long been rooted in justice-based coalition work.

With figures like Elon Musk playing major roles in the upcoming Trump administration, do you think conversations about how data is used have become more important? 

I’ve already seen an uptick in communities working to get new laws passed at the local level to require greater public oversight over the acquisition of new surveillance technologies by police and city authorities. My community in Urbana, Illinois, currently has an ordinance [now tabled] before the city council to this end.

These have been commonsense approaches to maintaining public transparency and protecting civil rights, civil liberties, and due process. But they also emerge from a growing awareness that even in normal conditions, it would not be unthinkable to imagine that data collected on targeted individuals by public agencies with the initial intent to promote safety and health could be repurposed for malicious and discriminatory use.

Dozens of US cities began passing laws to prevent facial recognition data capture after 2019 reports revealed that hundreds of millions of driver’s license photos stored in states’ Department of Motor Vehicles databases were being used by ICE to search for immigrants of interest.

Many universities, including my own, refuse to keep records on such data points as which students have DACA status, to prevent undue risks to students and to the educational environment writ large. And, of course, there’s a long history of US eugenic researchers leveraging data pools they were allowed to collect by using public institutions to help monitor populations to pass varied anti-immigration and pro-forced sterilization laws targeting “the unfit” in the name of public health and safety.

I’m heartened to see conversations already re-energized around the political implications of data collection and to see new coalition-making around what resources we might be able to protectively leverage at the local level. This kind of solidarity-making across diverse constituencies, and drawing from traditions in justice-based coalition-making, is what we’re going to need to become well-practiced at.

This interview has been edited for length and clarity.

On December 19, 2014, then-President Barack Obama signed the Achieving a Better Life Experience Act into law, establishing tax-exempt savings accounts of up to $100,000 for qualified disability expenses—including education, housing, transportation, health, and basic living expenses—for people whose disabilities began before age 26, without counting against the $2,000 Social Security Insurance asset limit.

In the decade since, ABLE accounts have meaningfully improved the lives of over 160,000 people by giving them more financial independence. It’s an underappreciated example of just how much impact a seemingly small reform can have. Still, the number of ABLE accounts is small, considering around 8 million people qualify. For its tenth anniversary, I spoke with Max H., a disabled person who lives with Marfan syndrome, autism and schizoaffective disorder, about their experience having an ABLE account.

My dad died from epilepsy when I was 16, in 2018. At the time, we were on food stamps, and I don’t remember a time I wasn’t on Medicaid. My mom had to stop working after he died, and she had to have neck surgery for Ehlers-Danlos syndrome. My mom talked with our developmental pediatrician about the way the ABLE accounts work—my three siblings and I are all disabled. [It] meant the money that people gave us after my dad died, and his life insurance policy, was able to go there, and my mom could still use it for utilities and educational supplies.

I got on SSI when I was 18, in 2020. If I had not had the ABLE account, I would have still had around $7,000 after I turned 18 that was in a savings account somewhere [and been ineligible for SSI].

I did work last year in a tax agency starting in January, and I somehow managed to [work] enough hours—at $12 an hour, while working three and a half days a week—that my SSI payments were paused. When I stopped working in April, the SSI office didn’t reinstate my payments until August. The ABLE account helped me cover my expenses in April, May, June and July. Once the SSI people realized that I hadn’t been working since April, I was [backpaid] over $2,000, so that put me over the asset limit as is. I either had to spend it or put it in the ABLE account.

There is a problem, though, where it’s not easy to get your parents off your ABLE account when you turn 18. I worry about that for the disability community, especially with people with intellectual developmental or psychotic disorders, who are at an increased risk for guardianship. Financial abuse can also be very rampant towards us. I had full control over my account, but my mother could see what I was purchasing until I was like 20. I’m not under guardianship. I didn’t want my mother to know that I was buying Plan B, that kind of thing. Having my mom on the account did not make it easy to actually use it what I needed to use it for.

An ABLE account does make it easier to get money when you need it, [unlike] a special needs trust or a 529 college account, which doesn’t work for day-to-day expenses.

This interview has been edited for length and clarity.

On December 19, 2014, then-President Barack Obama signed the Achieving a Better Life Experience Act into law, establishing tax-exempt savings accounts of up to $100,000 for qualified disability expenses—including education, housing, transportation, health, and basic living expenses—for people whose disabilities began before age 26, without counting against the $2,000 Social Security Insurance asset limit.

In the decade since, ABLE accounts have meaningfully improved the lives of over 160,000 people by giving them more financial independence. It’s an underappreciated example of just how much impact a seemingly small reform can have. Still, the number of ABLE accounts is small, considering around 8 million people qualify. For its tenth anniversary, I spoke with Max H., a disabled person who lives with Marfan syndrome, autism and schizoaffective disorder, about their experience having an ABLE account.

My dad died from epilepsy when I was 16, in 2018. At the time, we were on food stamps, and I don’t remember a time I wasn’t on Medicaid. My mom had to stop working after he died, and she had to have neck surgery for Ehlers-Danlos syndrome. My mom talked with our developmental pediatrician about the way the ABLE accounts work—my three siblings and I are all disabled. [It] meant the money that people gave us after my dad died, and his life insurance policy, was able to go there, and my mom could still use it for utilities and educational supplies.

I got on SSI when I was 18, in 2020. If I had not had the ABLE account, I would have still had around $7,000 after I turned 18 that was in a savings account somewhere [and been ineligible for SSI].

I did work last year in a tax agency starting in January, and I somehow managed to [work] enough hours—at $12 an hour, while working three and a half days a week—that my SSI payments were paused. When I stopped working in April, the SSI office didn’t reinstate my payments until August. The ABLE account helped me cover my expenses in April, May, June and July. Once the SSI people realized that I hadn’t been working since April, I was [backpaid] over $2,000, so that put me over the asset limit as is. I either had to spend it or put it in the ABLE account.

There is a problem, though, where it’s not easy to get your parents off your ABLE account when you turn 18. I worry about that for the disability community, especially with people with intellectual developmental or psychotic disorders, who are at an increased risk for guardianship. Financial abuse can also be very rampant towards us. I had full control over my account, but my mother could see what I was purchasing until I was like 20. I’m not under guardianship. I didn’t want my mother to know that I was buying Plan B, that kind of thing. Having my mom on the account did not make it easy to actually use it what I needed to use it for.

An ABLE account does make it easier to get money when you need it, [unlike] a special needs trust or a 529 college account, which doesn’t work for day-to-day expenses.

This interview has been edited for length and clarity.

Dani Izzie, a wheelchair user with quadriplegia, tried to take public transit, as she usually does, when visiting Miami in 2022. Heading to catch a bus, Izzie came to the end of a street without curb cuts—meaning she couldn’t safely cross it to the bus stop. She tried to get an accessible taxi; none were available. The door-to-door paratransit service wasn’t an option, since it needs advance scheduling. It ultimately took a call to police, who helped her down the curb.

This wasn’t the first time, says Izzie, that “the absurdity of one little oversight” limited her autonomy and mobility. The real estate website Redfin’s Walk Score rates Miami the sixth-most walkable large city in the United States. But its methodology, Redfin confirmed to me, does not account for accessibility.

Since the 1990s, there’s been a push among urbanists to reduce city driving and its hazards: American pedestrian fatalities number more than 7,000 a year, and with each car in a city releasing close to 5 metric tons of carbon dioxide annually, car reliance harms everyone else, too.

The rate of vehicle-pedestrian deaths among wheelchair users was 36 percent higher than that of the overall population.

Some US cities—including Los Angeles; Tempe, Arizona; and Jersey City, New Jersey—have made great strides toward limiting cars, mainly by designating car-free streets or areas. But car-free zones have met opposition, and not just from irate conservatives. Opponents of such initiatives have called them “exclusionary,” “not progressive or inclusive,” and bound to “hurt people with disabilities,” pointing out that many disabled people simply need cars to get around.

But Anna Zivarts, director of Disability Rights Washington’s Disability Mobility Initiative and author of the book When Driving Is Not an Option, points out that disabled people are actually less likely to drive than nondisabled people “and more likely to get around [by] walking and rolling and taking transit.” Car-heavy cities are also disproportionately dangerous for disabled folks: A 2015 study by Georgetown University researchers found that the rate of vehicle-pedestrian deaths among wheelchair users was 36 percent higher than that of the overall population.

Zivarts herself bikes, not drives, around her city of Seattle: She lives with the eye condition nystagmus, as does her son, which makes operating a car unsafe. Fighting for greater accessibility, she says, would also “make the world more accessible for him.” That doesn’t just mean car-free zones, but issues like sidewalk safety: One of her initiative’s first major successes was helping to get an additional $83 million added to a levy on Seattle’s November ballot to fix and expand sidewalks for accessibility, which ultimately passed with 66 percent support.

Maddy Ruvolo, a disabled transportation planner for the San Francisco Municipal Transportation Agency, focuses on mobility and accessibility. Ruvolo acknowledges that some disabled people find car ownership “important for their mobility”: It “wouldn’t be fair to say that no disabled people need cars,” she says. But she’s concerned to see “accessibility used as a political football.”

In Vancouver, opponents argued that a bike lane hurt disabled drivers’ ability to get to a public park—though some disabled people themselves supported the initiative—and got most of the lane removed by the Vancouver Park Board. And vice versa: Ruvolo says it’s also harmful for people to throw “statistics around disability and transportation as a way of arguing for active transportation projects that don’t necessarily take accessibility into account.”

Evidence shows that walkable communities are good for disabled people—even beyond simply letting them enjoy the considerable benefits of being outdoors. A 2022 study in the Journal of Transport Geography scored walkability across six Southern ­California counties by housing density, street connectivity, and land use mix: An area with abundant sidewalks and, say, pharmacies and grocery stores was rated more walkable. It found that a modest increase in walkability meant disabled people took transit 33 percent more often than before—likely because better walkability made transit stops easier to get to.

Making cities accessible is also an equity issue. Ruvolo is a member of the US Access Board, an independent federal agency that works toward better accessibility for people with disabilities. Disabled people, she notes, are more likely to have lower incomes—they’re twice as likely to live below the poverty line—and to rely on public transit by necessity. In San Francisco, for example, low-income people with certain disabilities have qualified for free bus and subway rides since 2015. Paris does the same for many aging adults and some disabled people. That’s much cheaper than gas and auto maintenance.

Retrofitting sidewalks and adding shuttles can make a dent in a city’s budget. But in theory, as pointed out by Sarah Kaufman, executive director of New York University’s Rudin Center for Transportation Policy and Management, in a Scientific American opinion piece, you can solve that problem by linking accessibility to congestion pricing. Before it was blocked for months by Gov. Kathy ­Hochul, New York City’s charge on Manhattan traffic was set to help fund accessibility upgrades, like elevators, to its subways. Hochul decided to restore that plan in November, ahead of a possible ban on such charges under Donald Trump’s administration.

As Kaufman wrote in August, when Hochul was still preventing its implementation, “the defeat of this measure—meant to bolster public transit use and reduce city traffic—served as yet another accelerant down the road to a looming crisis across the US: the growing inability of aging boomers to travel.” London has had congestion prices since 2003—disabled people who qualify are exempt from its costs—and just four years later, reports showed that the system had generated tens of millions of dollars annually for transit improvement.

Better public transit improves quality of life for disabled people, Ruvolo says, “as long as accessibility is baked in there.”

There are undeniably cases in which walkability and accessibility come head-to-head: Take some historic pedestrian-­only alleyways in Charleston, South Carolina, which can be hard to navigate with a walker due to their unevenness. Yet there’s often an affordable solution to be found. In 2022, when San Francisco’s Golden Gate Park permanently closed a major boulevard to cars, opponents, including city Supervisor Connie Chan, said it was disabled and aging folks who would pay the price. But free shuttles, ­accessible to anyone, now bridge the gap. Other roads throughout the park remain open to drivers.

For Ruvolo, the key to solving accessibility problems is soliciting disabled residents’ input—and using it. She and her team meet regularly with disability groups in San Francisco, incorporating their ideas into new and existing initiatives. In 2023, for example, the team had disabled students test electric scooters for the city’s scooter-share program. Their feedback helped make the program better for disabled people: Officials picked more scooters with backrests and larger wheels that keep them stable. Better public transit improves the quality of life for disabled people, Ruvolo says, “as long as accessibility is baked in there.”

Annoyed with time changes in the fall and spring? So is President-elect Donald Trump. On Friday, Trump posted on Truth Social that the “Republican Party will use its best efforts to eliminate Daylight Saving Time” because it is “inconvenient, and very costly to our Nation.”

Ending daylight saving time would also not be that original—two thirds of countries do not have it. Americans do seem to be split on the issue. In a 2019 poll, 7 out of 10 Americans said they did not like the biannual switches, but 4 in 10 wanted a fixed standard time and 3 in 10 wanted daylight saving time.

Even putting aside the economic argument for ending daylight saving time, some research suggests that the practice of putting the clock one hour ahead in the spring can negatively impact peoples’ mental health. When our internal clock is thrown off and we get less sleep, our mood can be impacted, leading us to feel less focused and potentially more depressed. This lack of focus can also be deadly—a February 2020 study that looked at two decades’ worth of traffic accidents found that there was a 6 percent increase in the risk of fatal traffic accidents in the week following daylight saving time in the United States.

In October 2020, the American Academy of Sleep Medicine, a professional society that represents medical specialists who focus on sleep medicine, even issued a statement in support of ending daylight saving time in favor of a fixed year-round schedule:

It is the position of the AASM that the U.S. should eliminate seasonal time changes in favor of a national, fixed, year-round time. Current evidence best supports the adoption of year-round standard time, which aligns best with human circadian biology and provides distinct benefits for public health and safety.

Unlike Trump’s recent false claims linking vaccines with autism diagnoses, his support of ending daylight saving time is actually backed by science.

Annoyed with time changes in the fall and spring? So is President-elect Donald Trump. On Friday, Trump posted on Truth Social that the “Republican Party will use its best efforts to eliminate Daylight Saving Time” because it is “inconvenient, and very costly to our Nation.”

Ending daylight saving time would also not be that original—two thirds of countries do not have it. Americans do seem to be split on the issue. In a 2019 poll, 7 out of 10 Americans said they did not like the biannual switches, but 4 in 10 wanted a fixed standard time and 3 in 10 wanted daylight saving time.

Even putting aside the economic argument for ending daylight saving time, some research suggests that the practice of putting the clock one hour ahead in the spring can negatively impact peoples’ mental health. When our internal clock is thrown off and we get less sleep, our mood can be impacted, leading us to feel less focused and potentially more depressed. This lack of focus can also be deadly—a February 2020 study that looked at two decades’ worth of traffic accidents found that there was a 6 percent increase in the risk of fatal traffic accidents in the week following daylight saving time in the United States.

In October 2020, the American Academy of Sleep Medicine, a professional society that represents medical specialists who focus on sleep medicine, even issued a statement in support of ending daylight saving time in favor of a fixed year-round schedule:

It is the position of the AASM that the U.S. should eliminate seasonal time changes in favor of a national, fixed, year-round time. Current evidence best supports the adoption of year-round standard time, which aligns best with human circadian biology and provides distinct benefits for public health and safety.

Unlike Trump’s recent false claims linking vaccines with autism diagnoses, his support of ending daylight saving time is actually backed by science.

On Wednesday, the nonprofit organization Disability Rights Florida sued the Florida Department of Children and Families, claiming that the state agency failed to collect data and compile comprehensive annual reports on the people it’s involuntarily committing.

Florida’s Baker Act, which first passed in 1971, has required specific data—including the length of commitments and the diagnoses of those committed—to be collected since 2007. But it hasn’t been doing that, according to Disability Rights Florida. What available data does show, however, is that children with alleged mental health issues in Florida are involuntarily committed at higher rates than children in other states under similar laws. From 2020 to 2021, around one in five people involuntarily committed under Florida’s Baker Act was 18 or younger. In 2020, Florida involuntarily committed a 6-year-old with ADHD, a case that made national news.

Children in Florida are involuntarily committed at higher rates than children in other states under similar laws.

To be committed under the Florida’s Baker Act, which is officially known as the Florida Mental Health Act, three criteria need to be met: a person must refuse a voluntary exam, be believed to have a mental illness, and be deemed a threat to themselves or others. After an initial hold of up to 72 hours, the person can be forced to continue to have involuntary inpatient or outpatient treatment by a judge for up to six months, and this can be extended again at the judge’s discretion.

“The Baker Act requires that DCF track important facts about how involuntary psychiatric care is used, like how long the average patient stays in a receiving facility,” said Sam Boyd, Southern Poverty Law Center senior attorney in a press release. SPLC and the Florida Health Justice Project are representing Disability Rights Florida in its lawsuit. “Its failure to do so interferes with Disability Rights Florida’s responsibility to protect and advocate for individuals subject to involuntary psychiatric examination.” 

While the issues that Disability Rights Florida is alleging with data collection did not start under Governor Ron DeSantis, changes to the Baker Act have happened under him. DeSantis approved legislation this past June that would make it easier for police officers to put people on an involuntary psychiatric hold.

DeSantis has previously claimed that involuntary commitments would stop mass shootings. However, research largely suggests that some mass shooters’ having a mental health diagnosis is more often coincidental than a contributing factor to such violence.

A 2021 SPLC report found that the use of the Baker Act has outpaced the increase of mental health diagnoses in the state, especially for children. “This explosion in Baker Act use has coincided with a drastic increase in police presence in schools,” the report notes, “suggesting that the Baker Act is being used punitively in some cases, like juvenile arrests and incarceration, to target and remove children that teachers, administrators, and school police perceive as uncontrollable or undesirable.” SPLC highlighted that at Palm Beach schools during the 2019-2020 school year, 40 percent of students involuntarily committed were Black, despite making up 28 percent of the student population.

Involuntary commitments may also play a role in how forthcoming people may be about their mental health. One small 2019 study, for instance, found that people were less likely to want to disclose concerning psychiatric symptoms, such as suicidal ideations, to a mental health provider after an involuntary commitment.

The Florida Department of Children and Families did not reply to a request for comment on the lawsuit. The lawsuit, which the state has not responded to yet, requests that the court require the state agency to start collecting better data and compile annual reports.

On Tuesday, the Department of Labor filed a proposed rule that could end the subminimum wage for disabled people—beginning the process of closing a loophole that can let companies pay disabled employees less than a dollar per hour.

When the federal minimum wage was established in 1938, it included a carveout that would permit companies to obtain certificates and pay disabled people less than non-disabled people. The argument for this subminimum wage is that disabled people bring less value to the workforce.

As of January 2023, half of the people—mostly those with intellectual and developmental disabilities—working under this certificate program make less than $3.50 an hour. These employees mostly work in sheltered workshops, which disabled advocates have also criticized for segregating disabled workers.

The new proposal recommends that the Department of Labor stop issuing new certificates, as well as let current certificates expire. Prior to this rule, 25 states have either started to phase out, completely ended, or introduced legislation to end subminimum wage for disabled people.

Mia Ives-Rublee, the senior director of the Disability Justice Initiative at the Center for American Progress, said that ending the certificate program “is one of the first steps to reducing poverty within the disability community and stopping the exploitation of disabled people.”

This proposed rule has been in the works for a long time. In 2014, an advisory committee was put together, which included advocates with intellectual and developmental disabilities. The committee concluded that “current widespread practice of paying workers subminimum wages, based on assumptions that individuals with disabilities cannot work in typical jobs…[is] antithetical to the intent of modern federal policy and law.”

Of course, the elephant in the rule is whether the incoming Trump administration will support an end to this type of subminimum wage. Donald Trump has not previously voiced his opposition or support of the certificate program; likewise, Project 2025 has not weighed in on this certificate program either.

Members of the public will be able to submit written comments on this proposed rule by January 17, 2025.

On Tuesday, the Department of Labor filed a proposed rule that could end the subminimum wage for disabled people—beginning the process of closing a loophole that can let companies pay disabled employees less than a dollar per hour.

When the federal minimum wage was established in 1938, it included a carveout that would permit companies to obtain certificates and pay disabled people less than non-disabled people. The argument for this subminimum wage is that disabled people bring less value to the workforce.

As of January 2023, half of the people—mostly those with intellectual and developmental disabilities—working under this certificate program make less than $3.50 an hour. These employees mostly work in sheltered workshops, which disabled advocates have also criticized for segregating disabled workers.

The new proposal recommends that the Department of Labor stop issuing new certificates, as well as let current certificates expire. Prior to this rule, 25 states have either started to phase out, completely ended, or introduced legislation to end subminimum wage for disabled people.

Mia Ives-Rublee, the senior director of the Disability Justice Initiative at the Center for American Progress, said that ending the certificate program “is one of the first steps to reducing poverty within the disability community and stopping the exploitation of disabled people.”

This proposed rule has been in the works for a long time. In 2014, an advisory committee was put together, which included advocates with intellectual and developmental disabilities. The committee concluded that “current widespread practice of paying workers subminimum wages, based on assumptions that individuals with disabilities cannot work in typical jobs…[is] antithetical to the intent of modern federal policy and law.”

Of course, the elephant in the rule is whether the incoming Trump administration will support an end to this type of subminimum wage. Donald Trump has not previously voiced his opposition or support of the certificate program; likewise, Project 2025 has not weighed in on this certificate program either.

Members of the public will be able to submit written comments on this proposed rule by January 17, 2025.

When Gwen Williams’ mother was dying, taking her to an in-person appointment to get more medicine seemed impossible. So Williams made a telehealth appointment with the doctor—a video call. It was that easy.

“Her comfort was paramount,” Williams, who lives in Minnesota, recounts. “My mother wasn’t conscious during the visit, but [the doctor] was able to see her and was able to get the hospice medications and everything refilled.” 

Williams’ mother was on Medicare, as is she. Since 2020, Medicare has covered a wide range of remote medical services, some in critical situations like theirs, and others for routine care. Around one in four telehealth appointments are made by people on Medicare.

Around one in four telehealth appointments are made by people on Medicare.

The fact that Medicare will abruptly cut off that coverage for most specialties on January 1—barely a month away—Williams said, “just blows my mind.”

What we now call telehealth, an umbrella term for remote and digitally assisted medical care, was first developed by NASA in 1960 as a suite of tools to monitor astronauts’ health in space. While it has been gaining traction as a widespread, normalized aspect of care since the beginning of this century, telehealth really exploded in 2020 with the onset of the Covid-19 pandemic.

Until then, for Medicare patients—which includes most Americans over 65, and some younger disabled people—remote care coverage had been limited. In rural areas, for instance, people on Medicare could speak to a non-local specialist via telehealth, but not from home; they still had to go to a local hospital to place the call.

But on March 6, 2020, the Centers for Medicare and Medicaid Services temporarily expanded Medicare’s telehealth coverage to all specialties. That expansion, renewed in 2022, is set to expire at the end of the year, impacting more than 65 million Americans.

Multiple bills have been introduced in the 118th Congress to preserve Medicare telehealth provisions and continue allowing people on Medicare to use telehealth flexibly, but all still await votes in both the House and Senate. Perhaps the likeliest to pass, the Telehealth Modernization Act of 2024, introduced by Rep. Buddy Carter (R-Ga.), received widespread, bipartisan support from members of the House Committee on Energy and Commerce and its subcommittee on health.

“Seniors, individuals with mobility issues, and those living in rural areas rely on telehealth,” Rep. Carter said in a statement to Mother Jones, calling the act “critical legislation that will extend telehealth flexibilities to get Medicare beneficiaries the life-saving health care they need.”

Where so many other health issues can be partisan or controversial, says Telehealth Access for America executive director Alye Mlinar, telehealth manages to be bipartisan. Mlinar hopes the bipartisan support “critical for really any issue” that telehealth has garnered will help lead to another congressional extension.

Epilepsy Foundation chief medical officer Dr. Jacqueline French’s organization has supported telehealth access for people with epilepsy even before the start of the Covid pandemic.

“There’s nothing that we learn from a physical exam that we could not learn from just talking to a person,” said French, who is also a professor of neurology at New York University Langone Health’s Comprehensive Epilepsy Center. The Epilepsy Foundation is one member of Telehealth Access for America, a consortium that includes, among other groups, the American Medical Association, Johns Hopkins Medicine and the National Down Syndrome Society.

There are plenty of patients who can’t make long journeys at all—but for many others, telehealth is still a way to avoid travel risks. Traveling with uncontrolled seizures, for instance, can be dangerous, French notes.

Even if Congress does not extend its current, wide coverage of telehealth for Medicare recipients, a handful of protections—mainly around dialysis, strokes, and mental health—would remain.

Williams, whose mother also relied on telehealth, also praised the separate ways it benefits her: When the doctor who prescribed their mental health medication moved away, telehealth prevented a disruption in her care. She likens the often needless in-person visits to “a meeting that could have just been an email.”

“Just have to have a conversation with your doctor,” Williams said, “paying for transportation, paying for parking if you drive—it’s a real barrier when all you need is to have a conversation, to continue care, or ask a question.”

But there are limitations to a blanket extension of the program, argues Medicare Rights Center senior counsel Casey Schwarz. 

“We had really hoped Congress would take the opportunity to look carefully at what a telehealth benefit could and should look like, because while the pre-pandemic status quo is inadequate,” Schwarz told Mother Jones, “A complete lack of restriction or breaks on telehealth services is also inappropriate, and we think has some risk for beneficiaries.”

Schwarz said that she had heard from Medicare recipients “who have received what they believe to be substandard care through telehealth because something that they think would have been noticed or caught in an in-person visit was missed.”

An investigation by Mayo Clinic researchers found that diagnostic accuracy for people on telehealth ranged from 77 percent for ear, nose, and throat doctors to 96 percent for psychiatrists across a 90-day period in 2020. However, specialists, such as rheumatologists, were more likely to request an in-person appointment to continue care, in comparison to primary care doctors. 

Schwarz also says that telehealth cannot replace other forms of compliance with civil rights laws around accessibility, like the Americans with Disabilities Act.

“We don’t want to see telehealth fill in a way for providers to indicate that they do not need to meet physical access requirements because they provide telehealth services,” she said.

In-person services, especially from specialists, can’t always be replaced—and people like Schwarz raise the risk of telehealth, often cheaper for providers, being used to justify cuts to in-person services. Williams, for instance, does see their neurologists in-person, so they are able to assess her reflexes and the progression of their neuropathy.

With just weeks until the end of the year and Medicare’s telehealth termination, there is not much time for individual bills to pass through Congress and be signed into law by President Biden. 

Mlinar, however, is optimistic that an extension for Medicare telehealth recipients will be part of an annual end-of-year package negotiated by Congress “given the overwhelming support.”

“The biggest question at this point,” Mlinar said, “is [for] how long.”

When Gwen Williams’ mother was dying, taking her to an in-person appointment to get more medicine seemed impossible. So Williams made a telehealth appointment with the doctor—a video call. It was that easy.

“Her comfort was paramount,” Williams, who lives in Minnesota, recounts. “My mother wasn’t conscious during the visit, but [the doctor] was able to see her and was able to get the hospice medications and everything refilled.” 

Williams’ mother was on Medicare, as is she. Since 2020, Medicare has covered a wide range of remote medical services, some in critical situations like theirs, and others for routine care. Around one in four telehealth appointments are made by people on Medicare.

Around one in four Medicare patients takes advantage of telehealth.

The fact that Medicare will abruptly cut off that coverage for most specialties on January 1—barely a month away—Williams said, “just blows my mind.”

What we now call telehealth, an umbrella term for remote and digitally assisted medical care, was first developed by NASA in 1960 as a suite of tools to monitor astronauts’ health in space. While it has been gaining traction as a widespread, normalized aspect of care since the beginning of this century, telehealth really exploded in 2020 with the onset of the Covid-19 pandemic.

Until then, for Medicare patients—which includes most Americans over 65, and some younger disabled people—remote care coverage had been limited. In rural areas, for instance, people on Medicare could speak to a non-local specialist via telehealth, but not from home; they still had to go to a local hospital to place the call.

But on March 6, 2020, the Centers for Medicare and Medicaid Services temporarily expanded Medicare’s telehealth coverage to all specialties. That expansion, renewed in 2022, is set to expire at the end of the year, impacting more than 65 million Americans.

Multiple bills have been introduced in the 118th Congress to preserve Medicare telehealth provisions and continue allowing people on Medicare to use telehealth flexibly, but all still await votes in both the House and Senate. Perhaps the likeliest to pass, the Telehealth Modernization Act of 2024, introduced by Rep. Buddy Carter (R-Ga.), received widespread, bipartisan support from members of the House Committee on Energy and Commerce and its subcommittee on health.

“Seniors, individuals with mobility issues, and those living in rural areas rely on telehealth,” Rep. Carter said in a statement to Mother Jones, calling the act “critical legislation that will extend telehealth flexibilities to get Medicare beneficiaries the life-saving health care they need.”

Where so many other health issues can be partisan or controversial, says Telehealth Access for America executive director Alye Mlinar, telehealth manages to be bipartisan. Mlinar hopes the bipartisan support “critical for really any issue” that telehealth has garnered will help lead to another congressional extension.

Epilepsy Foundation chief medical officer Dr. Jacqueline French’s organization has supported telehealth access for people with epilepsy even before the start of the Covid pandemic.

“There’s nothing that we learn from a physical exam that we could not learn from just talking to a person,” said French, who is also a professor of neurology at New York University Langone Health’s Comprehensive Epilepsy Center. The Epilepsy Foundation is one member of Telehealth Access for America, a consortium that includes, among other groups, the American Medical Association, Johns Hopkins Medicine and the National Down Syndrome Society.

There are plenty of patients who can’t make long journeys at all—but for many others, telehealth is still a way to avoid travel risks. Traveling with uncontrolled seizures, for instance, can be dangerous, French notes.

Even if Congress does not extend its current, wide coverage of telehealth for Medicare recipients, a handful of protections—mainly around dialysis, strokes, and mental health—would remain.

Williams, whose mother also relied on telehealth, also praised the separate ways it benefits her: When the doctor who prescribed their mental health medication moved away, telehealth prevented a disruption in her care. She likens the often needless in-person visits to “a meeting that could have just been an email.”

“Just have to have a conversation with your doctor,” Williams said, “paying for transportation, paying for parking if you drive—it’s a real barrier when all you need is to have a conversation, to continue care, or ask a question.”

But there are limitations to a blanket extension of the program, argues Medicare Rights Center senior counsel Casey Schwarz. 

“We had really hoped Congress would take the opportunity to look carefully at what a telehealth benefit could and should look like, because while the pre-pandemic status quo is inadequate,” Schwarz told Mother Jones, “A complete lack of restriction or breaks on telehealth services is also inappropriate, and we think has some risk for beneficiaries.”

Schwarz said that she had heard from Medicare recipients “who have received what they believe to be substandard care through telehealth because something that they think would have been noticed or caught in an in-person visit was missed.”

An investigation by Mayo Clinic researchers found that diagnostic accuracy for people on telehealth ranged from 77 percent for ear, nose, and throat doctors to 96 percent for psychiatrists across a 90-day period in 2020. However, specialists, such as rheumatologists, were more likely to request an in-person appointment to continue care, in comparison to primary care doctors. 

Schwarz also says that telehealth cannot replace other forms of compliance with civil rights laws around accessibility, like the Americans with Disabilities Act.

“We don’t want to see telehealth fill in a way for providers to indicate that they do not need to meet physical access requirements because they provide telehealth services,” she said.

In-person services, especially from specialists, can’t always be replaced—and people like Schwarz raise the risk of telehealth, often cheaper for providers, being used to justify cuts to in-person services. Williams, for instance, does see their neurologists in-person, so they are able to assess her reflexes and the progression of their neuropathy.

With just weeks until the end of the year and Medicare’s telehealth termination, there is not much time for individual bills to pass through Congress and be signed into law by President Biden. 

Mlinar, however, is optimistic that an extension for Medicare telehealth recipients will be part of an annual end-of-year package negotiated by Congress “given the overwhelming support.”

“The biggest question at this point,” Mlinar said, “is [for] how long.”

Some 15 percent of Americans are enrolled in Medicare Part D, which covers outpatient prescription drug costs for older adults and other qualifying individuals, providing nearly $140 billion a year in support to about 50 million people. But the program is administered by the Centers for Medicare and Medicaid Services—which President-elect Donald Trump has nominated celebrity physician Mehmet Oz to lead.

It’s questionable how a man infamous for promoting questionable supplements, who has commented that there’s no right to health for people who can’t afford it, will help lead and provide government health insurance in the United States. On his show, the cardiothoracic surgeon has mounted attacks on medications that Part D covers, such as antidepressants, claiming that they do not work for most patients (the evidence is against him).

Given his history, it makes sense that Oz would be part of Trump’s “Make America Healthy Again” cohort, which does seem fairly anti-science: Robert F. Kennedy Jr.’s attacks on vaccines, for instance, also conveniently ignore that measles and polio can cause lifelong health conditions. Medicare Part D currently covers the costs of all recommended vaccines.

But what kind of damage could Oz do from his new post? Will he be able to cut medications that actually help people manage chronic health conditions—conditions that people who qualify for Medicare are more likely to have? The short answer is no. At least not on his own.

Juliette Cubanski, deputy director of health nonprofit KFF‘s program on Medicare policy, explains that the range of medications covered by Medicare Part D is specified in the Social Security Act.

“Generally speaking, Medicare Part D covers drugs and vaccines that are approved by the Food and Drug Administration,” Cubanski told Mother Jones. “The law specifically excludes some types of drugs from coverage under Part D, including drugs used for weight loss or cosmetic purposes.” So dubious supplements that Oz promoted on his show could not readily be added to the list, nor could he easily remove actual medication.

“Congress would need to change the law in order to change what drugs Medicare Part D covers,” Cubanski said. “An agency official acting under their own authority can’t do that.”

There is still the possibility that some aspects of Medicare Part D could change through a regulatory process, says University of Pennsylvania health law and policy professor Allison Hoffman, but that too is a rigorous procedure—and attacking Medicare would also be a risky political move.

“Medicare Part D was passed during a Republican administration and with Republican control in Congress, with Democratic support,” Hoffman said. “Trump knows to tread carefully in this space because Medicare is a widely popular program and the Part D program has really created a lot of financial security for people.”

But if Republicans do, as they have pledged, go after the Inflation Reduction Act, which helped fund and improve Medicare affordability, Part D isn’t necessarily in the clear. The IRA instituted a new $2,000-a-year cap on out-of-pocket spending costs for prescriptions—still a lot for many older Medicare patients, and for qualifying younger disabled people, but an extremely short-lived protection if it’s immediately overturned by the GOP.

And while Oz on his own can’t screw up Medicare Part D too badly, there’s no guarantee he’ll let it work smoothly, either. In practice, the plans are administered by private insurance companies, which can choose which pharmacies to work with and even which medications to cover. Federal health reforms like the Affordable Care Act have focused in part on making it harder for insurers to weasel out of providing care—not a likely priority for Trump’s health officials. If someone on Medicare needs to start a new medication, they could meet with a rude awakening.

“That would require them to either switch to a different drug in the class, or switch plans during the next open enrollment period,” says Julie Donohue, chair of the University of Pittsburgh’s Department of Health Policy and Management.

Such limitations in Part D—and related programs, like private-insurer-run Medicare Advantage plans—illustrate the consistent failures of privatizing Medicare, something Oz nevertheless pushed for more of during his unsuccessful 2022 Senate campaign.

With the chaos and uncertainty that’s marked Trump’s White House nominations—like former Rep. Matt Gaetz withdrawing on Thursday from consideration to be his Attorney General—Hoffman also cautions us to “wait to see if people are confirmed,” rather than immediately panicking about “our imagination of what these policies might be.”

Some 15 percent of Americans are enrolled in Medicare Part D, which covers outpatient prescription drug costs for older adults and other qualifying individuals, providing nearly $140 billion a year in support to about 50 million people. But the program is administered by the Centers for Medicare and Medicaid Services—which President-elect Donald Trump has nominated celebrity physician Mehmet Oz to lead.

It’s questionable how a man infamous for promoting questionable supplements, who has commented that there’s no right to health for people who can’t afford it, will help lead and provide government health insurance in the United States. On his show, the cardiothoracic surgeon has mounted attacks on medications that Part D covers, such as antidepressants, claiming that they do not work for most patients (the evidence is against him).

Given his history, it makes sense that Oz would be part of Trump’s “Make America Healthy Again” cohort, which does seem fairly anti-science: Robert F. Kennedy Jr.’s attacks on vaccines, for instance, also conveniently ignore that measles and polio can cause lifelong health conditions. Medicare Part D currently covers the costs of all recommended vaccines.

But what kind of damage could Oz do from his new post? Will he be able to cut medications that actually help people manage chronic health conditions—conditions that people who qualify for Medicare are more likely to have? The short answer is no. At least not on his own.

Juliette Cubanski, deputy director of health nonprofit KFF‘s program on Medicare policy, explains that the range of medications covered by Medicare Part D is specified in the Social Security Act.

“Generally speaking, Medicare Part D covers drugs and vaccines that are approved by the Food and Drug Administration,” Cubanski told Mother Jones. “The law specifically excludes some types of drugs from coverage under Part D, including drugs used for weight loss or cosmetic purposes.” So dubious supplements that Oz promoted on his show could not readily be added to the list, nor could he easily remove actual medication.

“Congress would need to change the law in order to change what drugs Medicare Part D covers,” Cubanski said. “An agency official acting under their own authority can’t do that.”

There is still the possibility that some aspects of Medicare Part D could change through a regulatory process, says University of Pennsylvania health law and policy professor Allison Hoffman, but that too is a rigorous procedure—and attacking Medicare would also be a risky political move.

“Medicare Part D was passed during a Republican administration and with Republican control in Congress, with Democratic support,” Hoffman said. “Trump knows to tread carefully in this space because Medicare is a widely popular program and the Part D program has really created a lot of financial security for people.”

But if Republicans do, as they have pledged, go after the Inflation Reduction Act, which helped fund and improve Medicare affordability, Part D isn’t necessarily in the clear. The IRA instituted a new $2,000-a-year cap on out-of-pocket spending costs for prescriptions—still a lot for many older Medicare patients, and for qualifying younger disabled people, but an extremely short-lived protection if it’s immediately overturned by the GOP.

And while Oz on his own can’t screw up Medicare Part D too badly, there’s no guarantee he’ll let it work smoothly, either. In practice, the plans are administered by private insurance companies, which can choose which pharmacies to work with and even which medications to cover. Federal health reforms like the Affordable Care Act have focused in part on making it harder for insurers to weasel out of providing care—not a likely priority for Trump’s health officials. If someone on Medicare needs to start a new medication, they could meet with a rude awakening.

“That would require them to either switch to a different drug in the class, or switch plans during the next open enrollment period,” says Julie Donohue, chair of the University of Pittsburgh’s Department of Health Policy and Management.

Such limitations in Part D—and related programs, like private-insurer-run Medicare Advantage plans—illustrate the consistent failures of privatizing Medicare, something Oz nevertheless pushed for more of during his unsuccessful 2022 Senate campaign.

With the chaos and uncertainty that’s marked Trump’s White House nominations—like former Rep. Matt Gaetz withdrawing on Thursday from consideration to be his attorney general—Hoffman also cautions us to “wait to see if people are confirmed,” rather than immediately panicking about “our imagination of what these policies might be.”