When the Fair Labor Standards Act was signed into law in 1938, first establishing a national minimum wage, it came with an exemption: employers could pay some disabled workers less than minimum wage. The federal exemption still stands, even as many states roll back their versions—and that wage can still be as little as 25 cents an hour.
25 states have since introduced or enacted legislation to phase out this outdated practice. Defenders of the 14(c) certificate program often argue that the disabled workers it covers, most of whom have intellectual and developmental disabilities, just wouldn’t get a job elsewhere.
A study published today in JAMA Health Forum by University of Pennsylvania researchers refutes that argument. Its authors found that in two states—New Hampshire and Maryland—that banned the practice, employment rates for adults with intellectual and developmental disabilities, such as people who are autistic, either increased or didn’t change when employers had to pay them an equal wage.
Neurologist Mihir Kakara, the study’s lead author, says the finding “points towards the fact that these people are able to work in equal-paying, fully integrated jobs as their peers who do not have a disability, given the right resources.”
Many employers paying disabled workers subminimum wage use so-called “sheltered workshops,” which have also been criticized by disability advocates, as they segregate disabled workers. Whether or not a state maintains the subminimum wage, workers with cognitive disabilities still work fewer hours overall, and are paid less than those without cognitive disabilities.
Notably, New Hampshire had no below-minimum-wage disabled workers at the time of its repeal, unlike Maryland—but the employment rate for people with intellectual and developmental disabilities still increased when the state legally kicked the exemption to the curb. The researchers theorize that “media coverage and debates around Section 14(c) repeal might encourage or signal to families and individuals with [intellectual and development disabilities] previously out of the labor force to apply for employment training.”
While the Biden Department of Labor was expected to introduce a rule to either make the program more equitable or get rid of it entirely, it has yet to take action. For now, paying a worker less than minimum wage because they’re in a protected class remains, in many states, entirely legal.
Donald Trump’s nephew Fred Trump III doesn’t expect to be invited to his uncle’s inauguration this time around. He did, after all, write a book exposing some of the president-elect’s unsavory behavior, including the Donald telling Fred he should let his disabled son, William, die.
View on Threads
But Fred Trump still plans to spend time in Washington, DC, in the coming years to push for progress on disability issues. “I joke that there are two things Donald and I share: the love of golf and we’re both relentless,” Fred said. That relentlessness also led him to start an advocacy nonprofit with his wife, Lisa, to fight for improved care for people with intellectual and developmental disabilities.
In an interview with Mother Jones, Fred said his uncle’s increasing use of both the phrase “mentally disabled” and the R-word to describe opponent Kamala Harris in the weeks leading up to the election reflected his harmful views on disability.
Remarking on Harris’ intelligence in response, Fred said, still wasn’t much of a critique of Trump: “It doesn’t matter. You don’t say it to anybody.”
And it’s not just his uncle that Fred is irate about: It’s the reaction of his uncle’s supporters. They laughed again and again at Trump turning disability into a cruel joke, Fred noted, just like they laughed when Trump mockedNew York Times reporter Serge Kovaleski’s disability in 2015.
Fred believes the Harris-Walz campaign could have pushed much more on disability issues; he witnessed the campaign drop the ball when it came to engaging with disability organizations, he said, and as a fellow father of a young person with a disability, Fred was disheartened that Minnesota Gov. Tim Walz did not address the issue during his debate with Vice President-elect JD Vance.
“Tim Walz doesn’t even mention the word ‘disability,’” Fred said. “You have a child who has disabilities, who became such a guiding light during the convention, and I was there to witness that.”
But unlike some people opposed to Trump’s presidency, Fred finds questioning the election itself a waste of time. Instead, he urged, people opposed to the new administration should swiftly “get engaged for whatever cause is important to you.”
When the Fair Labor Standards Act was signed into law in 1938, first establishing a national minimum wage, it came with an exemption: employers could pay some disabled workers less than minimum wage. The federal exemption still stands, even as many states roll back their versions—and that wage can still be as little as 25 cents an hour.
25 states have since introduced or enacted legislation to phase out this outdated practice. Defenders of the 14(c) certificate program often argue that the disabled workers it covers, most of whom have intellectual and developmental disabilities, just wouldn’t get a job elsewhere.
A study published today in JAMA Health Forum by University of Pennsylvania researchers refutes that argument. Its authors found that in two states—New Hampshire and Maryland—that banned the practice, employment rates for adults with intellectual and developmental disabilities, such as people who are autistic, either increased or didn’t change when employers had to pay them an equal wage.
Neurologist Mihir Kakara, the study’s lead author, says the finding “points towards the fact that these people are able to work in equal-paying, fully integrated jobs as their peers who do not have a disability, given the right resources.”
Many employers paying disabled workers subminimum wage use so-called “sheltered workshops,” which have also been criticized by disability advocates, as they segregate disabled workers. Whether or not a state maintains the subminimum wage, workers with cognitive disabilities still work fewer hours overall, and are paid less than those without cognitive disabilities.
Notably, New Hampshire had no below-minimum-wage disabled workers at the time of its repeal, unlike Maryland—but the employment rate for people with intellectual and developmental disabilities still increased when the state legally kicked the exemption to the curb. The researchers theorize that “media coverage and debates around Section 14(c) repeal might encourage or signal to families and individuals with [intellectual and development disabilities] previously out of the labor force to apply for employment training.”
While the Biden Department of Labor was expected to introduce a rule to either make the program more equitable or get rid of it entirely, it has yet to take action. For now, paying a worker less than minimum wage because they’re in a protected class remains, in many states, entirely legal.
It can be challenging to manage the symptoms of a disability or chronic illness during a long workday. For disabled and chronically ill poll workers, Election Day—which can mean 14-hour shifts—certainly takes the cake.
Being a poll worker can be a meaningful civic duty for those who participate. Disabled poll workers are also crucial: They understand the importance of making sure disabled voters’ access needs are met—11 percent of disabled people had trouble voting during the 2020 presidential election, according to the Election Assistance Commission. It’s unclear just how many poll workers have a disability, but in addition to long days, concerns about the job’s impact on Social Security benefits may hinder some.
After last week’s election, I spoke with four poll workers about how the day went for them.
I’ve been a poll worker for a couple of years now. I’ve always been politically engaged. I previously worked in President Obama’s administration, and I always want a way to give back to the community.
I brought a seizure first-aid poster with me so that I could educate my fellow poll workers if anything were to happen—here’s how you handle a seizure—and educated them on my seizure type. I also had my partner’s contact information in there, in case anything were to happen. I wanted to make sure they were comfortable.
One of my roles was doing the ADA accessibility checklist that the Chicago Department of Elections has, where you have to go through and make sure the accessible voting machine has a certain radius around it for people in wheelchairs to be able to maneuver, and also have certain cones and signage up around accessibility. I’m happy to take on this role to make sure our polling location is ADA-accessible. People with disabilities and chronic conditions have a different perspective and might think of things other people do not.
I have the time, and I know how important elections are. It was my second time doing it, this time with my daughter—I had done it in September, and the polling place, a community center, was the one that my grandparents were founding members of. So us being there together, with my grandparents in a mural in the building, was that much more poignant to me.
My daughter was really vigilant about letting everyone know, no matter what, that they would be able to use an accessible voting machine. There were more than 35 people who used it. Some of them had a visible disability, some for an auditory disability, and for others, it was a language difference. Some people had surgery, and the height is what made it accessible to them because they were in a wheelchair.
Four people were there from the Office of Civil Rights. We did have bilingual poll workers there for Spanish and English, including me, to help out with things, and people from the Office of Civil Rights did stand back to be able to hear how we were checking people in with their IDs, making sure to verify their address and their name, but in a way that was still respectful and clear for people. I was very proud to be able to facilitate such an important process and make them feel welcome.
This is my very first time being a poll worker. This year, I didn’t volunteer with a candidate, so I really wanted to be involved in the election in some way or form. I worked over 13 hours straight.
My significant other was telling one of his co-workers that I was going to be an election poll worker, and his co-worker happened to know that I have a disability and that I’m in a wheelchair. His response, word for word, was, “Wow. They let them work.” I forget that some people just blatantly do not understand that people with disabilities work and are out in the community.
At our polling station, each person that came in to vote was given a piece of paper, and they had to put their name and address on it, and when they got to our station, there were like five different things we had to write on the paper. That just surprised me, because whenever I go to vote, I show my ID and they have a paper that already has my name and address on it.
I can see why that might be a literacy issue for a lot of people, and it really troubled me—I didn’t realize that was something that people voting at that location had to do until the day I was working.
Veronica Ayala: Galveston, Texas
Ayala lives with cerebralpalsyandarthritis.
In 2008, I was inspired by the Obama campaign to really get involved, more so than before. I got a call from my aunt, who’d always been an election worker, because I speak Spanish, and they needed interpreters—she asked me if I would be willing to become an interpreter at the election.
One of the Republican election judges actually approached me and was like, why aren’t you a judge for your party? I thought my disability would hold me back from being a judge. There’s a lot of equipment and things like that the judges are responsible for. I’m like, “There’s no way I can lug that stuff.” She’s like, “They have people that would do that for you.”
We don’t do it in shifts like people think we do. I try to hydrate as best I can. I sit for too long helping with provisional ballots. It can be detrimental to my joints if I don’t get up and stretch and things like that, so I move at a snail’s pace. If I didn’t think I could do this job, I wouldn’t. The county calls me back every time, so I must be doing something right.
I’m a person with a disability. You may not be able to tell, but when I get up and move, you can tell. Knowing that someone with a disability is in that location makes them more comfortable with the idea of coming in and exercising their right to vote, because someone in there understands and will help them cast their ballot in a safe, secure way without any judgment.
Responses have been edited for length and clarity.
Disabled and chronically ill voters: What was your experience casting a ballot in person, either this week or in early voting?
Civil and voting rights protections like the Voting Rights Act and the Americans With Disabilities Act are supposed to protect disabled people’s right to vote in person, which means having the right accommodations: wheelchair-accessible entrances; lower voting booths; andchairs for people who have trouble standing for long periods. But polling stations often fall short, in both Democratic- and Republican-leaning areas.
Disabled and chronically ill voters: What was your experience casting a ballot in person, either this week or in early voting?@metraux_julia on voting access pic.twitter.com/D1Pck8tSmv
Disabled people don’t all have the same preferences—or needs—when it comes to voting.Some people with fatiguing conditions likeLong Covidmay prefer mail voting to conserve energy and minimize Covid exposure; some Blind people may prefer to vote in person in order to cast an unassisted ballotwith an accessible voting machine.
Counties are responsible for choosing the locations where their residents vote. The right response to inaccessible voting locations is not to have fewer of them—polling place closures disproportionately impact voters of color—but to find more locations that are accessible. The Department of Justice also provides guidance on temporary solutions to make sure disabled people can vote, such as installing a ramp and keeping doors propped open…As of now, no state mandates that poll workers be trained in accommodating disabled voters.
What may be accessible to some disabled people may not be for others. That’s why it’s crucial to move towards more accessible options both in-person and by mail—mail-in voting with paper ballots isn’t accessible, for example, to people who are Blind and have low vision, the subject of a lawsuit filed in Wisconsin…arguing that disabled voters should be able to vote electronically.
If accessible voting—and disabled voters—were taken more seriously in America, more disabled people would take part in the electoral process. It’s that simple.
In the days and weeks after the 2020 election, more than 65,000 mail-in ballots were rejected for arriving too late—and given how much is at stake in 2024’s races, nationally and at the state level, it makes sense that American voters would do just about anything to make sure their vote gets counted. For millions of people, that includes waiting in long lines at polling places, sometimes for hours, even at the risk of fainting.
While waiting in line can be exhausting for anyone, it has unique impacts on disabled and chronically ill people. Standing for long periods can send some chronically ill people into weeks-long flares, a trade-off many were willing to make to try to stop a Trump victory—which, especially through the machinations of Project 2025, could greatly hurt disabled people.
The closure (or lack) of polling places is one factor in those wait times, particularly in Black neighborhoods, where the wait to vote is typically already longer. The burden falls disproportionately on disabled and aging Black people; in Texas, for instance, from 2016 to 2018, there were more closures of polling locations in counties where more Latino and Black Texans lived.
Meanwhile, Republicans across the country have launched many lawsuits trying to make the definition of “on time” stricter—which, as my colleague Abby Vesoulis has reported, is part of a bogus GOP strategy to try and turn the election in its favor. It may be working: Just one day before the election, the Georgia Supreme Court ruled that Cobb County could only count ballots received by 7 p.m. local time on Election Day.
When I spoke to Michelle Bishop, the National Disability Rights Network‘s voting access manager, in April, she told me that voting locations should consider “moving people with disabilities to the front of the line” if they cannot stand for long periods. While some polling places do have separate lines for disabled voters, as well as curbside voting, it’s far from uniform.
Rachel Green, who lives in North Carolina’s Davidson County, voted early—like more than half the county’s voters—at a local polling place. In person, they told me, they could trust that their ballot wouldn’t be rejected.
(Charles Stewart, the director of the Massachusetts Institute of Technology’s Election Data and Science Lab, told me that voters shouldn’t have much fear that mail-in ballots won’t be accepted—but that “it is simply a matter of fact that if you take the same person, have them vote in person, and then vote by mail, the mail ballot has a slightly lower chance of being counted.”)
But the wait was physically taxing on Green, who lives with arthritis in their knees and feet. The whole process took two to three times as long—an hour and a half—as in previous years. With invisible disabilities and no blue parking placard, Green didn’t expect to qualify for curbside voting, and there were no seats available, even once they got in. “I’m doing a shuffle from side to side, bending my knees,” they said to me. “People were looking at me funny.” Green thinks there just needed to be more chairs.
Standing isn’t the only challenge in long lines—so are rules against providing voters with food and water, known as “line warming,” which the American Bar Association says “can serve as a tool to make it easier to stay in line so eligible voters who want to vote can cast their ballot.” (Line warming has been illegal since 2021 in Florida, but similar laws have been limited in Georgia, and completely struck down in New York, by federal judges.)
It’s not just Republican-controlled areas that have long lines. In Philadelphia—the largest city in a crucial swing state—Eshani Surya, who lives with ulcerative colitis, had to leave a voting line on Election Day to go to the bathroom during her 45-minute wait. There was no line for disabled voters, and although her husband was there to save her spot, there was no guarantee that she could get back in line.
But, like many others, Surya still elected to vote in person to be involved in the real-life excitement of it all: “There was an energy about being there,” she said.
If Donald Trump becomes president again, it looks like Robert F. Kennedy Jr. will have his say over who gets which vaccines: Trump said at a rally last weekend that he would let RFK Jr. “go wild” on health should he win the White House. RFK Jr. said Trump promised him control of the Department of Health and Human Services, where the CDC and FDA are housed; Trump’s campaign seemed to suggest that wasn’t set in stone.
A world where an anti-vax advocate would play a large role in shaping vaccine policy is kind of terrifying. While RFK Jr. does make extremely off-the-cuff comments, including about Covid-19 vaccines, some of Kennedy’s specific claims about vaccines may not be apparent unless you go looking for them.
Well, I went looking for them. Here are some of RFK Jr.’s claims about various childhood vaccines throughout the decades, most of which are usually required if you go to public schools. What’s perhaps the most disturbing underlying factor of all his vaccine conspiracy theories is the suggestion that a dead child—vaccines save a lot of lives—is better than an autistic or chronically ill one, conditions he claims vaccines cause.
Measles, Mumps, and Rubella
In a 2005 Rolling Stone article, RFK Jr. suggests that a rise in childhood vaccines was tied to an increase in kids being diagnosed with autism.
Before 1989, American preschoolers received 11 vaccinations—for polio, diphtheria-tetanus-pertussis and measles-mumps-rubella. A decade later, thanks to federal recommendations, children were receiving a total of 22 immunizations by the time they reached first grade. As the number of vaccines increased, the rate of autism among children exploded.
RFK Jr. was not the first person to suggest a link between the MMR vaccine and autism. Andrew Wakefield’s retractedLancet study linking the two, which was total nonsense, should take a lot of the blame. But RFK Jr. still promoted the conspiracy theory that the measles vaccine was linked to autism in a 2021 Fox News interview, and in his 2023 co-written book Vax Unvax, Kennedy also suggests that the measles vaccine is linked to Crohn’s disease and ulcerative colitis.
Diphtheria-Tetanus-Pertussis (and Haemophilus Influenzae B)
In the same Rolling Stone piece, RFK Jr. essentially claimed that Americans had been poisoning their kids with vaccines that contained thimerosal, which is no longer in routine childhood vaccines, except some versions of the flu vaccine.
Tragically, that same year, the CDC recommended that infants be injected with a series of mercury-laced vaccines. Newborns would be vaccinated for hepatitis B within 24 hours of birth, and 2-month-old infants would be immunized for haemophilus influenzae B and diphtheria-tetanus-pertussis.
The FDA says that the thimerosal in vaccines has “significantly declined due to reformulation and development of new vaccines—not that the tiny amount of it in vaccines was linked to autism or other health issues. Kennedy also claimed that receiving multiple DTP vaccines raised infant mortality (the 2004 study which Kennedy and Brian Hooker, his cowriter, cite has not been replicated).
Hepatitis B
In a 2017 interview with Stat News, RFK Jr. said that the Hepatitis B vaccine hadn’t received enough testing. He seemed to find a new argument as to why the treatment wasn’t when thimerosal was removed:
The hepatitis B vaccines that are currently approved had fewer than five days of safety testing. That means that if the child has a seizure on the sixth day, it’s never seen.
Back to the infamous 2005 Rolling Stone piece: RFK Jr. seems to suggest that people should not trust the rotavirus vaccine because of financial conflicts of interest in its advocacy.
The House Government Reform Committee discovered that four of the eight CDC advisors who approved guidelines for a rotavirus vaccine “had financial ties to the pharmaceutical companies that were developing different versions of the vaccine.” Offit, who shares a patent on one of the vaccines, acknowledged to me that he “would make money” if his vote eventually leads to a marketable product. But he dismissed my suggestion that a scientist’s direct financial stake in CDC approval might bias his judgment. “It provides no conflict for me,” he insists. “I have simply been informed by the process, not corrupted by it.”
In a 2023 Substack post, Paul Offit, the doctor RFK Jr. referred to in that excerpt, debunked both Kennedy’s claims about himself, and the shoddy science he relied on.
Polio
Type I diabetes is a serious illness—one that Kennedy stokes fears of in his book Vax Unvax. The book claims that Type I diabetes appears in about 21 of 100,000 kids vaccinated against polio, more than double the rate for those who were not vaccinated, according to research performed between 1990 and 2000. Kennedy and Hooker cite a single study to support their claim that the typical polio vaccine given until the year 2000 was dangerous. But most other research refutes this claim. Vax Unvax claims to want to “let the science speak,” per its subtitle, but doesn’t mention how polio can lead to permanent paralysis.
Influenza
As you can probably tell by now, Kennedy likes picking single studies to back his narrative. In Vax Unvax, Kennedy and Hooker point to one study that claims that kids who have gotten the seasonal flu vaccine are almost four times more likely to be hospitalized.
Kennedy’s strategy on childhood vaccines is to instill fear backed by lone studies, claiming they can make kids sicker, in opposition to decades of research that show that childhood vaccines stop kids from getting sicker—and let them avoidpreventable long-term health effects.
If Donald Trump becomes president again, it looks like Robert F. Kennedy Jr. will have his say over who gets which vaccines: Trump said at a rally last weekend that he would let RFK Jr. “go wild” on health should he win the White House. RFK Jr. said Trump promised him control of the Department of Health and Human Services, where the CDC and FDA are housed; Trump’s campaign seemed to suggest that wasn’t set in stone.
A world where an anti-vax advocate would play a large role in shaping vaccine policy is kind of terrifying. While RFK Jr. does make extremely off-the-cuff comments, including about Covid-19 vaccines, some of Kennedy’s specific claims about vaccines may not be apparent unless you go looking for them.
Well, I went looking for them. Here are some of RFK Jr.’s claims about various childhood vaccines throughout the decades, most of which are usually required if you go to public schools. What’s perhaps the most disturbing underlying factor of all his vaccine conspiracy theories is the suggestion that a dead child—vaccines save a lot of lives—is better than an autistic or chronically ill one, conditions he claims vaccines cause.
Measles, Mumps, and Rubella
In a 2005 Rolling Stone article, RFK Jr. suggests that a rise in childhood vaccines was tied to an increase in kids being diagnosed with autism.
Before 1989, American preschoolers received 11 vaccinations—for polio, diphtheria-tetanus-pertussis and measles-mumps-rubella. A decade later, thanks to federal recommendations, children were receiving a total of 22 immunizations by the time they reached first grade. As the number of vaccines increased, the rate of autism among children exploded.
RFK Jr. was not the first person to suggest a link between the MMR vaccine and autism. Andrew Wakefield’s retractedLancet study linking the two, which was total nonsense, should take a lot of the blame. But RFK Jr. still promoted the conspiracy theory that the measles vaccine was linked to autism in a 2021 Fox News interview, and in his 2023 co-written book Vax Unvax, Kennedy also suggests that the measles vaccine is linked to Crohn’s disease and ulcerative colitis.
Diphtheria-Tetanus-Pertussis (and Haemophilus Influenzae B)
In the same Rolling Stone piece, RFK Jr. essentially claimed that Americans had been poisoning their kids with vaccines that contained thimerosal, which is no longer in routine childhood vaccines, except some versions of the flu vaccine.
Tragically, that same year, the CDC recommended that infants be injected with a series of mercury-laced vaccines. Newborns would be vaccinated for hepatitis B within 24 hours of birth, and 2-month-old infants would be immunized for haemophilus influenzae B and diphtheria-tetanus-pertussis.
The FDA says that the thimerosal in vaccines has “significantly declined due to reformulation and development of new vaccines—not that the tiny amount of it in vaccines was linked to autism or other health issues. Kennedy also claimed that receiving multiple DTP vaccines raised infant mortality (the 2004 study which Kennedy and Brian Hooker, his cowriter, cite has not been replicated).
Hepatitis B
In a 2017 interview with Stat News, RFK Jr. said that the Hepatitis B vaccine hadn’t received enough testing. He seemed to find a new argument as to why the treatment wasn’t when thimerosal was removed:
The hepatitis B vaccines that are currently approved had fewer than five days of safety testing. That means that if the child has a seizure on the sixth day, it’s never seen.
Back to the infamous 2005 Rolling Stone piece: RFK Jr. seems to suggest that people should not trust the rotavirus vaccine because of financial conflicts of interest in its advocacy.
The House Government Reform Committee discovered that four of the eight CDC advisors who approved guidelines for a rotavirus vaccine “had financial ties to the pharmaceutical companies that were developing different versions of the vaccine.” Offit, who shares a patent on one of the vaccines, acknowledged to me that he “would make money” if his vote eventually leads to a marketable product. But he dismissed my suggestion that a scientist’s direct financial stake in CDC approval might bias his judgment. “It provides no conflict for me,” he insists. “I have simply been informed by the process, not corrupted by it.”
In a 2023 Substack post, Paul Offit, the doctor RFK Jr. referred to in that excerpt, debunked both Kennedy’s claims about himself, and the shoddy science he relied on.
Polio
Type I diabetes is a serious illness—one that Kennedy stokes fears of in his book Vax Unvax. The book claims that Type I diabetes appears in about 21 of 100,000 kids vaccinated against polio, more than double the rate for those who were not vaccinated, according to research performed between 1990 and 2000. Kennedy and Hooker cite a single study to support their claim that the typical polio vaccine given until the year 2000 was dangerous. But most other research refutes this claim. Vax Unvax claims to want to “let the science speak,” per its subtitle, but doesn’t mention how polio can lead to permanent paralysis.
Influenza
As you can probably tell by now, Kennedy likes picking single studies to back his narrative. In Vax Unvax, Kennedy and Hooker point to one study that claims that kids who have gotten the seasonal flu vaccine are almost four times more likely to be hospitalized.
Kennedy’s strategy on childhood vaccines is to instill fear backed by lone studies, claiming they can make kids sicker, in opposition to decades of research that show that childhood vaccines stop kids from getting sicker—and let them avoidpreventable long-term health effects.
At a Sunday campaign rally, former President Donald Trump promised, if re-elected, to let anti-vaccine conspiracy theorist and failed presidential candidate Robert F. Kennedy, Jr. “go wild on health.” Kennedy has previously signaled his desire to join a second Trump administration, after dropping out of the race and endorsing Trump—who himself has wild ideas about health—in August.
Trump tonight on RFK Jr:
“I'm gonna let him go wild on health. I'm gonna let him go wild on the food. I'm gonna let him go wild on the medicines." pic.twitter.com/tBVXrou1YQ
Trump’s pledge alarmed public health professionals, including Dr. Jerome Adams, his own surgeon general. Unlike many other top officials appointed by Trump, Adams was actually qualified: he was praised by colleagues for successfully limiting an HIV outbreak in Indiana by establishing a needle exchange program, among other public health successes.
On Monday, Adams spoke at a conference of the American Public Health Association—which endorsed his 2017 nomination as Surgeon General—on his concerns about Kennedy, especially his anti-vaccine stances, as New York Times reporter Sheryl Gay Stolberg wrote on X.
Trump's surgeon general, @JeromeAdamsMD warns RFK would hurt America's health:
"If RFK has a significant influence on the next administration, that could further erode people's willingness to get up to date with recommended vaccines, and I am worried about the impact that…
Adams has been a strong supporter of the development and distribution of Covid vaccines, and others, including by testifying at a 2021 House hearing on how to encourage Covid vaccine uptake. Kennedy, on the other hand, has promoted the debunked, dangerous theory that vaccines cause autism. It definitely does not—but polio and measles do cause people to develop disabilities.
As my colleague David Corn wrote for Mother Jones in July, Kennedy’s anti-vaccine activism could potentially be linked to the deaths of children in Samoa who contracted measles. (Kennedy denied fault.)
During the stretch in which the vaccination coverage was dropping in Samoa, Kennedy visited the nation in June 2019 and gave a boost to anti-vaxxers there who had used the death of those two infants to help cause the drop in vaccination rates…Public health experts complained Kennedy’s visit to Samoa helped amplifly anti-vax voices.
During his speech, Adams also directly appealed to Republicans, asking them to not play a role in “allowing vaccine confidence to continue to be eroded, and for us to go backwards on one of the number-one public health achievements made in the last 50 to 75 years in this country.”
As Donald Trump campaigns to be a dictator for one day, he’s asking: “Are you better off now than you were when I was president?” Great question! To help answer it, our Trump Files series is delving into consequential events from the 45th president’s time in office that Americans might have forgotten—or wish they had.
Abby Mahler blames Donald Trump and Elon Musk for the challenges faced bypeople who need hydroxychloroquine for lupus. In the early days of the Covid pandemic, both Trump and Musk promoted the drug as a possible Covid treatment, helping lead to widespread shortages that made it difficult for people like Mahler to obtain the medication she needed. “What Trump did could not have happened without Elon,” Mahler told Mother Jones.
For nearly four years, Mahler, who is based in Los Angeles, has been using TikTok to address misinformation about hydroxychloroquine, which was originally created to prevent and treat malaria, and can be used for a range of autoimmune disorders, including lupus, vasculitis and Sjogren’s syndrome. When they heard that hydroxychloroquine was being prescribed to patients with Covid-19, they were not concerned at first. A drug they already needed and used could also treat Covid-19?
“I remember very vividly joking with my friends,” Mahler said. “Like, ‘Ha ha, I’m going to live forever.'”
On March 16, 2020—just days after Trump declared Covid-19 a nationwide emergency—Musk tweeted a link to a Google Doc which claimed that HCQ, as it’s often known, and a related drug called chloroquine could help fight Covid-19. The Google Doc itself noticeably did not contain any notable statistics. “Maybe worth considering chloroquine for C19,” Musk wrote on Twitter, adding the following day: “Hydroxychloroquine probably better.” (In what turned out to be a darkly accurate bit of foreshadowing, Musk posted another tweet warning that “if we over-allocate medical resources to corona, it will come at expense of treating other illnesses.”)
Days later, a different study was published as a pre-print, meaning it had not yet been peer-reviewed. From a scientific standpoint, the evidence in that study was slim: The paper said that 12 patients benefited from HCQ after seven days, out of the 26 studied (not including the control group), after being diagnosed with Covid-19. The researchers also admitted that five of the patients had to stop taking HCQ after their health symptoms worsened.
Hydroxychloroquine, experts later concluded, wasn’t actually useful for preventing or treating Covid. But as infectious disease specialist Michael Saag wrote in a JAMA Network editorial in November 2020, desperation in the face of an unfolding pandemic had helped create a perfect storm in which the early HCQ research gained traction:
These findings suggestive of possible benefit, along with the desperation of clinicians who were providing care for patients with a potentially fatal disorder for which there was no treatment, undoubtedly contributed to increased use of hydroxychloroquine for patients with COVID-19, despite lack of rigorous evidence for efficacy.
The sudden demand spike for HCQ came alongside a price increase for a key ingredient in the drug. Within a week of Musk’s tweet, Mahler had to try several pharmacies in order to get her HCQ, and had to pay $60, instead of her usual $15. Unlike many other people with lupus, she didn’t have to go without, but she did have to ration over the next few months, occasionally taking a half-dose to cope with the shortage.
Gregory Rigano, an attorney who was one of the authors of the Google Doc Musk promoted, appeared on Laura Ingraham’s Fox News program the very day Musk tweeted it out. Ingraham herself would later to Trump about how great HCQ was for Covid-19 in a private meeting in early April. (Trump’s campaign team and Musk did not respond to recent requests for comment from Mother Jones.) As Saag wrote:
On April 4, the US president, “speaking on gut instinct,” promoted the drug as a potential treatment and authorized the US government to purchase and stockpile 29 million pills of hydroxychloroquine for use by patients with COVID-19. Of note, no health official in the US government endorsed use of hydroxychloroquine owing to the absence of robust data and concern about adverse effects.
As Stat Newsreported at the time, Trump even stopped Anthony Fauci, then chief of the National Institute of Allergy and Infectious Diseases, from answering a question on the drug’s efficiency at a White House briefing. In May 2020, Trump proudly announced that he was taking hydroxychloroquine to prevent Covid-19, despite an FDA statement weeks earlier that it should not be used for Covid-19 outside of hospitals or clinical trials.
But in a “twist of irony,” Saag wrote, when Trump really did contract—and was hospitalized for—a serious case of Covid, he “did not receive hydroxychloroquine.”
That makes good medical sense: Trump’s praise for HCQ never included a disclosure that it can have serious side effects, like cardiac issues and changes to eyesight. Many patients on hydroxychloroquine, including myself, have to be tested regularly for HCQ-related vision issues. It’s hard to know just how widespread complications were in 2020.
“As soon as Trump started talking about, it became very obvious that things were gonna get bad quick,” Mahler said. In mid-May, they also had to argue with their health insurance company to avoid paying more than $100 for the medication, which had previously been quite inexpensive.
A survey by the Lupus Research Alliance found that a third of lupus patients reported difficulties filling HCQ prescriptions between March and May 2020. That can mean severe complications, including hospitalization—a frequent area of Covid transmission. Trump’s claims about hydroxychloroquine weren’t just another case of buffoonery, Mahler says, but a source of real harm in people’s lives.
Even outside the US, HCQ shortages became more common. A February 2021 study found new anxieties among lupus patients in Europe about such shortagesduring the first year of the pandemic.
I’m now on hydroxychloroquine myself, and though I wasn’t at the time, I remember watching in fear as rumors spread that the anti-inflammatory colchicine, which I was taking, would be Trump’s next proposed Covid treatment. I remember asking my then-rheumatologist if she was concerned that would happen. She told me that there’s no evidence it would help, but there wasn’t much evidence that HCQ would help either. Trump never embraced colchicine, but hydroxychloroquine shortages struck a nerve.
In mid-June 2020, the FDA ended its study on HCQ and Covid—results showed it wasn’t helping. Weeks later, Trump called hydroxychloroquine “a cure for Covid” and a reason not to wear amask. Trump was very much wrong, and high quality masks do help prevent the ongoing spread of Covid-19.
As Saag, the infectious disease expert, concluded:
The clear, unambiguous, and compelling lesson from the hydroxychloroquine story for the medical community and the public is that science and politics do not mix. Science, by definition, requires diligence and an honest assessment of findings; politics not so much.
This week, soon after his 100th birthday, former President Jimmy Carter was able to vote in his home state of Georgia—in part thanks to protections under the Voting Rights Act. As his grandson Jason Carter explained in a CNN interview with Jake Tapper, voting assistance protections in Georgia allow family members to help cast absentee ballots (the vote can still be discarded if a signature or mark on the ballot does not match what is on file, per Georgia law).
“He sat down and told everybody what he wanted to do, and was excited about it,” Jason Carter told Tapper. “My aunt dropped his ballot [at] an absentee drop box, just like thousands and thousands of other Georgians.”
Even if Carter doesn’t consider himself disabled, many aging people benefit from disability rights laws and protections. Section 208 of the Voting Rights Act guarantees that “any voter who requires assistance to vote by reason of blindness, disability, or inability to read or write may be given assistance by a person of the voter’s choice.”
In recent years, Republicans have attacked voters’ right to assistance, sometimes with carve-outs for close family members. But courts have repeatedly found such actions unconstitutional. In Texas, in 2022, a federal court ruled that people assisting voters can further explain ballot measures if asked; just last month in Alabama, a federal judge also ruled that the state was obligated to let voters get help from any person of their choice. While some people, like Carter, choose to, it’s not an option—or preference—for everyone.
Some aging people in Georgia still face barriers to voting, even if their right to assistance hasn’t been as harshly attacked. A recent lawsuit argues that a state law enacted this year, under which votes can be challenged if a voter is registered at a nonresidential address, could impact people living in nursing homes, assisted living communities, and similar facilities.
What is unclear, as my colleague Michael Mechanic recently wrote, is whether Georgia will count Carter’s ballot should he pass away before Election Day. What is clear, during the CNN interview, is how crucial Carter finds his right to vote, and the Voting Rights Act disability protections that enable him to do so.
“He has done that forever,” his grandson said, “and is excited to keep doing it.”
This week, soon after his 100th birthday, former President Jimmy Carter was able to vote in his home state of Georgia—in part thanks to protections under the Voting Rights Act. As his grandson Jason Carter explained in a CNN interview with Jake Tapper, voting assistance protections in Georgia allow family members to help cast absentee ballots (the vote can still be discarded if a signature or mark on the ballot does not match what is on file, per Georgia law).
“He sat down and told everybody what he wanted to do, and was excited about it,” Jason Carter told Tapper. “My aunt dropped his ballot [at] an absentee drop box, just like thousands and thousands of other Georgians.”
Even if Carter doesn’t consider himself disabled, many aging people benefit from disability rights laws and protections. Section 208 of the Voting Rights Act guarantees that “any voter who requires assistance to vote by reason of blindness, disability, or inability to read or write may be given assistance by a person of the voter’s choice.”
In recent years, Republicans have attacked voters’ right to assistance, sometimes with carve-outs for close family members. But courts have repeatedly found such actions unconstitutional. In Texas, in 2022, a federal court ruled that people assisting voters can further explain ballot measures if asked; just last month in Alabama, a federal judge also ruled that the state was obligated to let voters get help from any person of their choice. While some people, like Carter, choose to, it’s not an option—or preference—for everyone.
Some aging people in Georgia still face barriers to voting, even if their right to assistance hasn’t been as harshly attacked. A recent lawsuit argues that a state law enacted this year, under which votes can be challenged if a voter is registered at a nonresidential address, could impact people living in nursing homes, assisted living communities, and similar facilities.
What is unclear, as my colleague Michael Mechanic recently wrote, is whether Georgia will count Carter’s ballot should he pass away before Election Day. What is clear, during the CNN interview, is how crucial Carter finds his right to vote, and the Voting Rights Act disability protections that enable him to do so.
“He has done that forever,” his grandson said, “and is excited to keep doing it.”
California’s statewide rent control law, the Costa-Hawkins Act, has been contentious since it was signed into law in 1995. California politicians saw Costa-Hawkins, which made it illegal for localities to impose rent control on homes, condominiums, and new apartment housing, as a way to appease the interests of landlords.
Nearly 30 years later, Costa-Hawkins increasingly limits disabled and aging people’s ability to get accessible, affordable housing—practically impossible on a fixed income. The law was enacted less than four years after the Fair Housing Act’s accessibility requirements left some Californians stuck between old homes they couldn’t use and new ones they couldn’t afford.
Compounding the problem, the Americans With Disabilities Act, which requires shared common spaces to be accessible, was also signed into law just five years before Costa-Hawkins, in 1990. And Costa-Hawkins also froze previous local rent control laws—in San Francisco, only buildings built on or before June 13, 1979, are subject to rent control.
Ending Costa-Hawkins stands to increase the number of accessible apartment buildings.
“We have one member that spent two years coming out of a shelter trying to find a mobility-accessible unit that was affordable,” said Ocean Coast, a housing community organizer with San Francisco–based advocacy group Senior and Disability Action.
Ending Costa-Hawkins stands to increase the number of accessible apartment buildings—and Proposition 33, on California’s November ballot, would do just that. (San Francisco Supervisor Aaron Peskin, a mayoral candidate, has already introduced a bill to expand rent control if Proposition 33 passes.)
The proposition’smain backer is the AIDS Healthcare Foundation (AHF), which provides treatment and preventative services, including housing—though it has been criticized for, among other things, conditions in the residential units it owns.
Zeenat Hassan, a senior attorney with Disability Rights California, which supports ending the state’s rent control ban, said newer buildings come with irreplaceable benefits.
“For buildings, as much as for anything else, it’s usually easier to build accessibility into the front end that to try and retrofit things later on,” Hassan said.
But Prop 33 has earned the AHF a powerful enemy: California’s landlord lobby. Proposition 34, also on November’s ballot, would restrict AHF’s ability to fund ballot initiatives that are not explicitly related to health care—commercials for that bill position it as an innocuous pro-patient ballot initiative that might, on paper, sound appealing for disabled people with complex health conditions.
Konstantine Anthony sits on the city council of Burbank, in Los Angeles County. Anthony is also Burbank’s ex-mayor—the country’s first openly autistic mayor—and recently headed the state Democratic Party’s disability caucus. California’s landlord lobby was “fed up with fighting the AIDS Healthcare Foundation, and so they put a bill on the November ballot,” Anthony said. “It’s a revenge bill.”
It may “sound weird,” Anthony acknowledges, that the AIDS Healthcare Foundation is leading the fight to un-ban rent control. That’s part of a holistic approach, he says: people need to be housed to get effective medical treatment. A Los Angeles County report found that, in 2022, 13 percent of people recently diagnosed with HIV were experiencing homelessness.
And believes that expanding rent control, including into single-family homes, intertwines with disability rights.
“A lot of folks who have mobility issues, balance and illness issues, need a larger space,” Anthony said. That’s partly space for “wheelchairs or bedding or medical equipment, something that doesn’t typically fit into smaller apartments,” and potentially for live-in caregivers.
While Proposition 34 does not mention AHF by name, its effective targeting of the group has been widely reported—andit would be the soleorganization affected by the measure. The San Francisco Chronicle editorial board, which came out against Prop 33, called Prop 34 “cheap political gamesmanship.” The Los Angeles Times editorial board also opposed Prop 34, saying it has a “hidden agenda.” A request for comment to the California Apartment Association, which lobbies on behalf of the state’s landlords, was replied to directly by the Yes on 34 campaign.
Major developers and corporate landlords have funneled millions of dollars to make sure rent control isn’t expanded.
“Prop 34 simply ensures that taxpayer dollars meant to provide medical care for low-income patients actually are spent for that purpose,” said Yes on 34 spokesperson Nathan Click, a former top communications official for California Gov. Gavin Newsom. “It’s why it’s supported by more than a dozen patient rights organizations.” One such organization is the ALS Foundation—which, unlike the California Apartment Association, is not spending millions to stop a bill that could expand rent control.
The state’s major developers and corporate landlords, like Blackstone CEO Stephen Schwarzman, have funneled millions of dollars to the California Apartment Association to make sure rent control isn’t expanded. As of September 25, the Association’s Issues Committee had spent nearly $35 million to oppose Proposition 33, and almost another $30 million backing Proposition 34, according to records from the California Secretary of State. Two firms funding the campaigns, Essex Property Trust and Equity Residential, did not respond to requests for comment.
Jerry Flanagan, litigation director with the consumer rights group Consumer Watchdog, said that “this kind of initiative sets a horrible precedent for the idea that if you don’t like what a nonprofit organization is doing in terms of advocacy, just sponsor a ballot initiative to take that up—to kill it—and just dress it up as something else.”
Even if Prop 33 does not pass, and California’s rent control ban stays in force, Anthony, the Burbank city councilor, said the state could build on a model like the state’s Tenant Protection Act of 2019, which caps rent increases once an apartment building is 15 years old, unlike Costa-Hawkins’ fixed date.
Hassan, of Disability Rights California, also noted that the lack of affordable, accessible housing could force disabled people into institutions like nursing homes.
“When we allow the private market to continue the financialization of housing,” she said, “you increase the risk of perpetuating that segregation for people with disabilities.”
Three years ago, after developing Long Covid, 62-year-old Martha applied for Social Security Disability Insurance,which provides a modest monthly benefit to aging and disabled adults. Martha has no health insurance, which prevents her from getting the medical treatment she needs, and is homeless.
On Thursday, when she asked Vice President Kamala Harris about the issue at a town hall hosted by the Spanish-language news network Univision, she still hadn’t received a decision.
In the twelve-month stretch from October 2022 through September 2023, 30,000 people died while waiting for federal disability determinations, according to Social Security Commissioner Martin O’Malley. Martha asked Harris what she would do as president for people, like herself, who are waiting for disability decisions while in desperate need of health insurance.
Delays in those decisions, driven in part by understaffing and a Covid-related rise in disability rates, have driven the typical wait time from four months in 2019 to seven months today, often coupled with the need to appeal an initial rejection, which can take years. The processing times represent a mounting crisis for the more than 1 million Americans who apply for disability in a given year.
Harris, starting off on track, highlighted her recent push for Long Covid to be recognized under the Americans with Disabilities Act. But the vice president didn’t acknowledge the issue of wait times for federal disability benefit determinations, talking instead about how medical debt impacted credit scores.
Harris’ push to incorporate Long Covid into the ADA is welcome. Latino people are the likeliest of any racial group to report having Long Covid, according to Census data; many also participate in SSDI, and her Univision non-answer on wait times was eyebrow-raising.
But a Long Covid–friendly ADA doesn’t mean any change in Social Security practices, which are separate. Securing disability income is a much more complex, demanding process than securing ADA accommodations (which can be hard enough). Separate action is needed on both—and within Harris’ grasp, should she land in the White House.
this is a very emotional town hall. Harris takes a question from a homeless woman whose life was wrecked by long covid about what she'll do for people like her pic.twitter.com/O65A3GJIX3
That’s not to say that Democrats have made no moves to address challenges around Long Covid and Social Security disability delays. In August, a Senate group including Sen. Tim Kaine (D-Vir.), Sen. Ed Markey (D-Mass.), Sen Tammy Duckworth (D-Ill.), and Sen. Bernie Sanders (I-Ver.) sent O’Malley a letter asking a similar question: what was the Social Security Administration doing to address the barriers that applicants with Long Covid face? They have yet to receive a response—at least publicly.
Three years ago, after developing Long Covid, 62-year-old Martha applied for Social Security Disability Insurance,which provides a modest monthly benefit to aging and disabled adults. Martha has no health insurance, which prevents her from getting the medical treatment she needs, and is homeless.
On Thursday, when she asked Vice President Kamala Harris about the issue at a town hall hosted by the Spanish-language news network Univision, she still hadn’t received a decision.
In the twelve-month stretch from October 2022 through September 2023, 30,000 people died while waiting for federal disability determinations, according to Social Security Commissioner Martin O’Malley. Martha asked Harris what she would do as president for people, like herself, who are waiting for disability decisions while in desperate need of health insurance.
Delays in those decisions, driven in part by understaffing and a Covid-related rise in disability rates, have driven the typical wait time from four months in 2019 to seven months today, often coupled with the need to appeal an initial rejection, which can take years. The processing times represent a mounting crisis for the more than 1 million Americans who apply for disability in a given year.
Harris, starting off on track, highlighted her recent push for Long Covid to be recognized under the Americans with Disabilities Act. But the vice president didn’t acknowledge the issue of wait times for federal disability benefit determinations, talking instead about how medical debt impacted credit scores.
Harris’ push to incorporate Long Covid into the ADA is welcome. Latino people are the likeliest of any racial group to report having Long Covid, according to Census data; many also participate in SSDI, and her Univision non-answer on wait times was eyebrow-raising.
But a Long Covid–friendly ADA doesn’t mean any change in Social Security practices, which are separate. Securing disability income is a much more complex, demanding process than securing ADA accommodations (which can be hard enough). Separate action is needed on both—and within Harris’ grasp, should she land in the White House.
this is a very emotional town hall. Harris takes a question from a homeless woman whose life was wrecked by long covid about what she'll do for people like her pic.twitter.com/O65A3GJIX3
That’s not to say that Democrats have made no moves to address challenges around Long Covid and Social Security disability delays. In August, a Senate group including Sen. Tim Kaine (D-Vir.), Sen. Ed Markey (D-Mass.), Sen Tammy Duckworth (D-Ill.), and Sen. Bernie Sanders (I-Ver.) sent O’Malley a letter asking a similar question: what was the Social Security Administration doing to address the barriers that applicants with Long Covid face? They have yet to receive a response—at least publicly.
For some chronically ill and disabled people, the revolution will start from their rooms—or even from bed.
Since the fall of Roe v. Wade, the fight to protect abortion access has become even more urgent, with 13 states having banned procedural abortion outright. Maternal deaths rose by 56 percent in Texas after an abortion ban was enacted, and an August report by House Democrats on the Energy and Commerce Committee found that, since theDobbs decision, more pregnant people have delayed seeking care for complications. And more people are being forced to carry pregnancies to term who don’t want to—which isn’t exactly harmless to a person’s body. Every year, at least 40 million people worldwide (out of around 140 million who give birth annually) develop a long-term health problem linked to childbirth.
Yetthe end of Roe has had a unique impact on disabled people. Research has shown that disabled people die from pregnancy and birth complications at rates 11 times higher than non-disabled people. Women with disabilities, especially those with intellectual and developmental disabilities, are more likely to be sexually assaulted than non-disabled women, leading to more unwanted pregnancies.
“You don’t have to be a full-time activist in front of a camera at a rally in order to make a huge difference for someone.”
But the spate of bans has also led to new waves of abortion rights activism, including by disabled people. For those who experience chronic illnesses or a range of other disabilities, in-person activism isn’t always an option, especially with an ongoing pandemic—but there’s a powerful precedent for reproductive rights activism by disabled people.
Laurie Bertram Roberts, the executive director of the Mississippi Reproductive Freedom Fund, cares deeply about accessibility in part because they are disabled; from bed, they write grants and follow up with people who need assistance in abortion care to make sure their needs are met.
Former Mother Jones reporter Becca Andrews profiled Roberts and their fund’s work in 2019, when they faced down seemingly endless challenges even before the fall of Roe: “I don’t think [outsiders] understand that the structural barriers are at every turn of care,” Roberts said at the time. Now, as then, Roberts “spends much of her time bedbound due to painful fibromyalgia, but her phone and laptop are never far, basically operating as digital appendages.”
Roberts also hires workers who have their own experiences with chronic illnesses and disabilities—and encourages them to work in a way that is best for them, like taking flexible hours.
“A lot of us can get a whole lot done if people would just give us the opportunity to do it,” Roberts said.
The upside of taking reproductive rights activism online is that many people seeking abortions already turn to the internet for help. New York–based Ariella Messing, who lives with chronic migraines, saw how valuable that could be when she co-founded Online Abortion Resource Squad, which offers peer-based support. Messing and volunteers now run Reddit’s r/Abortion,where they answer questions for people seeking abortions around the world.
While running OARS is her full-time job as its executive director—and then some, with migraines interrupting some shifts—Messing has made volunteering for OARS accessible in multiple ways.
Helping someone learn how to safely get an abortion in their area can take just five minutes; as with OARS, it can be as simple as writing a comment on Reddit. “You don’t have to be a full-time activist in front of a camera at a rally in order to make a huge difference for someone,” Messing said.
But even among organizations that do put on events like rallies, there is still space for remote involvement, which Olivia Neal, a chronically ill communications staffer, does to help people have the information they need to get an abortion as part of her job at the ACLU of North Carolina.
Sustainable, accessible activism“takes a little extra people power.”
And the same challenges non-disabled activists face show up in force—like exhaustion and financial insecurity. Many people involved in the fight for reproductive rights don’t make a lot of money: Messing can’t afford good health insurance, and needs expensive medications. Lack of employer benefits, Messing said, was “the one thing holding me back at first from doing this full time—and that still is causing me trouble every single day.”
Avoiding overwork can be very hard when people need support, as Messing, who is usually logged into r/Abortion seven days a week, alsoknows. “It’s also really tiring to never be on autopilot,” she said. And despite accommodations to work remotely, Neal said, “I do feel that sense of guilt about not being able to always show up in physical spaces.”
Neal sees her main contribution as making information available and easily understandable: she created an abortion guide for those seeking one in North Carolina, including guidance on transportation and financial assistance. “We all bring different skills to the movement,” she said.
Ableism can mean even seasoned advocates aren’t not taken seriously; Roberts was previously pushed to step aside due to her disabilities. “Aside from the obvious ableism, I think that they missed the point that we are an important bloc of supporters.”
While the fight for abortion access is an important part of the battle for reproductive rights, it’s far from the only one. Even before the fall of Roe v. Wade, disabled people struggled to get accessible gynecological care: A 2018 study suggests that many gynecologists lack the training to give disabled people the equal treatment they need.
Mary Fashik, who has advocated for reproductive rights online as part of #UpgradeAccessibility, a movement she founded, experienced that firsthand. Fashik had an ovarian cyst burst, and when she finally had an appointment some days later, Fashik said she “could not get on the exam table because the exam table was not accessible.” Then and in general, Fashik felt that her white doctor was not taking her concerns seriously due to her race and disability. (Soon, fewer disabled people will experience this kind of inaccessible care: In August, the Justice Department finalized a rule mandating that medical diagnostic equipment, including examination tables, be accessible for people with disabilities.)
Fashik’s troubles helped lead her to organize online panels and events after Roe was overturned—“Online advocacy is real advocacy,” Fashik said—where she talked about birth control access and the forced sterilization of disabled people.
Sustainable, accessible activism“takes a little extra people power and or money,” Roberts notes. But it’s absolutely necessary for work like theirs, and the benefits outweighs the costs. “When we talk about access to care,” Roberts says, “we definitely have to talk about access to care for the disabled community.”
On Tuesday, Vice President Kamala Harris announced on The View that she would pursue a new Medicare benefit to cover the costs of in-home care for qualifying disabled people and anyone 65 and up.
Disabled people have fought for more than half a century for the right to remain in their homes and communities, rather than being subject to institutionalization—which includes the support, such as home care workers, that they need to do so. A recent poll released by the University of Michigan found that around three in five people older than 50 with a caregiver also have a physical disability. Medicare already covers home care for some people—but in a highly limited way that’s much more challenging to get.
“If you don’t have those services, you might unnecessarily be institutionalized.”
I spoke with Nicole Jorwic, Caring Across Generations’ chief of advocacy and campaigns, about Harris’ new proposal—what it means the people who would qualify, and what it would take for the benefit to succeed, if Harris is elected.
Why does Harris’ plan to expand Medicare excite you?
The plan from the Harris administration to include coverage for home care and Medicare is really a game-changer for disabled people and for older people. This proposal is exciting, not only for the folks that would get the care that they need but also because of the people that would be impacted by not having to provide that care themselves.
The most exciting thing about it for me is that something that I hear when I’m out and about, meeting with folks in the in the care advocacy community—is so many people think Medicare already does this. It’s creating a a benefit in a government funded system that people already think that they’re going to get—fixing a problem that many people don’t even know that they’re going to have until they’re in a crisis.
How could it help disabled people remain at home, rather than in institutions like nursing homes or group homes?
95 percent of disabled people want to live in their homes and in their communities. But the reality is, because Medicaid has traditionally been the main funder for these services, you have to remain in poverty in order to access these services. Also because states can limit how many people they serve, there’s waiting lists.
Adding home care into Medicare would mean that more of the 7 million disabled people who are currently eligible for Medicare— 12 percent of Medicare beneficiaries—then maybe [do] not need to go on waiting lists for services. If you don’t have those services, you might unnecessarily be institutionalized. This proposal to add home care to Medicare would also take some pressure off of the Medicaid system. We could hopefully continue to pull people off of the waiting list and remove the institutional bias that currently exists today.
Why is it also crucial to address the care-worker shortage for a plan like this to be successful?
Anybody who needs home care, those services are going to be provided by a direct care worker, and we are in a direct care worker crisis. Not because there’s not enough people, but because there’s not enough good direct care jobs. What this proposal does also include is ensuring that the folks that are providing these Medicare services are being paid a good wage.
Disability advocates and aging advocates, when we have the opportunity to implement a policy like this [which] would have to move through Congress, we would also ensure that it rides alongside investments that would ensure that every direct care worker, whether they’re paid by Medicaid or Medicare, are paid a family sustaining wage. We have to also address the direct care workforce, that’s the human infrastructure, the people that are actually providing the services, for this program to be successful.
Right now we think about those direct support professionals or home care workers, those folks when they age, don’t have access to home care right away, unless they qualify for Medicaid, which we know can have waiting lists. Vice President Harris’s proposal to add home care to Medicare also would guarantee that those direct care workers who have been historically low-paid would also have peace of mind if they need home care.
Have there been examples of programs at a state level similar to what Harris is proposing?
There isn’t necessarily an example of a state adding to a federal program, but there are some examples of where states have invested in folks that just need a little bit of extra support at home. Under the Affordable Care Act, there was a program that was passed called the Community First Choice Option. It requires states who take up this option, like Oregon and Texas, to provide home and community based care for eligible folks, mostly through personal care assistance, in the same way that that Vice President Harris’s proposal does.
For folks that are on a waiting list, it provides a narrow benefit. We know that if we provide some benefit to people right when they need it, it actually can prevent them, maybe, from needing longer-term care further down the road.
Are there any lessons to learn from the state-level implementation of the Community First Choice Option?
When you look at implementing programs like the Community First Choice Option at the state level, something that’s important to think about is that you want to create as much flexibility as possible. You want to make sure that the services that are being provided are going to meet the unique needs of the senior or the disabled person who needs that care—also making sure that the definition of a workforce is broad enough. There might be somebody who might want it to be their family member, or a disabled person who might want it to be their spouse. You can’t just throw more people into the system without also addressing the workforce.
This interview has been edited for length and clarity.
On Tuesday, Vice President Kamala Harris announced on The View that she would pursue a new Medicare benefit to cover the costs of in-home care for qualifying disabled people and anyone 65 and up.
Disabled people have fought for more than half a century for the right to remain in their homes and communities, rather than being subject to institutionalization—which includes the support, such as home care workers, that they need to do so. A recent poll released by the University of Michigan found that around three in five people older than 50 with a caregiver also have a physical disability. Medicare already covers home care for some people—but in a highly limited way that’s much more challenging to get.
“If you don’t have those services, you might unnecessarily be institutionalized.”
I spoke with Nicole Jorwic, Caring Across Generations’ chief of advocacy and campaigns, about Harris’ new proposal—what it means the people who would qualify, and what it would take for the benefit to succeed, if Harris is elected.
Why does Harris’ plan to expand Medicare excite you?
The plan from the Harris administration to include coverage for home care and Medicare is really a game-changer for disabled people and for older people. This proposal is exciting, not only for the folks that would get the care that they need but also because of the people that would be impacted by not having to provide that care themselves.
The most exciting thing about it for me is that something that I hear when I’m out and about, meeting with folks in the in the care advocacy community—is so many people think Medicare already does this. It’s creating a a benefit in a government funded system that people already think that they’re going to get—fixing a problem that many people don’t even know that they’re going to have until they’re in a crisis.
How could it help disabled people remain at home, rather than in institutions like nursing homes or group homes?
95 percent of disabled people want to live in their homes and in their communities. But the reality is, because Medicaid has traditionally been the main funder for these services, you have to remain in poverty in order to access these services. Also because states can limit how many people they serve, there’s waiting lists.
Adding home care into Medicare would mean that more of the 7 million disabled people who are currently eligible for Medicare— 12 percent of Medicare beneficiaries—then maybe [do] not need to go on waiting lists for services. If you don’t have those services, you might unnecessarily be institutionalized. This proposal to add home care to Medicare would also take some pressure off of the Medicaid system. We could hopefully continue to pull people off of the waiting list and remove the institutional bias that currently exists today.
Why is it also crucial to address the care-worker shortage for a plan like this to be successful?
Anybody who needs home care, those services are going to be provided by a direct care worker, and we are in a direct care worker crisis. Not because there’s not enough people, but because there’s not enough good direct care jobs. What this proposal does also include is ensuring that the folks that are providing these Medicare services are being paid a good wage.
Disability advocates and aging advocates, when we have the opportunity to implement a policy like this [which] would have to move through Congress, we would also ensure that it rides alongside investments that would ensure that every direct care worker, whether they’re paid by Medicaid or Medicare, are paid a family sustaining wage. We have to also address the direct care workforce, that’s the human infrastructure, the people that are actually providing the services, for this program to be successful.
Right now we think about those direct support professionals or home care workers, those folks when they age, don’t have access to home care right away, unless they qualify for Medicaid, which we know can have waiting lists. Vice President Harris’s proposal to add home care to Medicare also would guarantee that those direct care workers who have been historically low-paid would also have peace of mind if they need home care.
Have there been examples of programs at a state level similar to what Harris is proposing?
There isn’t necessarily an example of a state adding to a federal program, but there are some examples of where states have invested in folks that just need a little bit of extra support at home. Under the Affordable Care Act, there was a program that was passed called the Community First Choice Option. It requires states who take up this option, like Oregon and Texas, to provide home and community based care for eligible folks, mostly through personal care assistance, in the same way that that Vice President Harris’s proposal does.
For folks that are on a waiting list, it provides a narrow benefit. We know that if we provide some benefit to people right when they need it, it actually can prevent them, maybe, from needing longer-term care further down the road.
Are there any lessons to learn from the state-level implementation of the Community First Choice Option?
When you look at implementing programs like the Community First Choice Option at the state level, something that’s important to think about is that you want to create as much flexibility as possible. You want to make sure that the services that are being provided are going to meet the unique needs of the senior or the disabled person who needs that care—also making sure that the definition of a workforce is broad enough. There might be somebody who might want it to be their family member, or a disabled person who might want it to be their spouse. You can’t just throw more people into the system without also addressing the workforce.
This interview has been edited for length and clarity.
Thinking before you speak publicly is an important skill. Idaho State Sen. Dan Foreman, a conservative Republican, apparently did not get the memo.
As Boise State Public Radio, an NPR affiliate, reported on Thursday, a “meet the candidates” forum was held on Tuesday evening in Kendrick, a town with a population of about 300. Foreman attended, as did others running for District 6 state House and Senate seats. (Idaho has 35 legislative districts, each with one senator and two representatives.)
After Trish Carter-Goodheart, a Democrat running for a House seat, pointed out that discrimination and racism exist in Idaho, Foreman reportedly lost his temper and told her to “go back where you came from.”
Among the various problems with that statement, Carter-Goodheart happens to be a member of the Nez Perce tribe, which has a reservation smack in the middle of District 6. She was where she came from. Foreman, as the radio piece noted, was born in Illinois. (Foreman did not respond to Boise State Public Radio for comment.)
Foreman is not the only Western politician to make offensive remarks about Native Americans recently—Republican US Senate candidate Tim Sheehy admitted to doing the same, and his Democratic rival, incumbent Jon Tester, has made it a campaign issue.
Tester: The statement you made degrades Native Americans. You're a big guy, apologize.
Sheehy: Do you apologize for opening the border?
Tester: I didn't open the border. When we had a opportunity to fix the border, you said we want to play politics with this pic.twitter.com/FRbM23aD3R
Republican Rep. Lori McCann—who is running against Carter-Goodheart—told the radio station that she agrees with her opponent’s assessment of what happened, which Carter-Goodheart summarized in a statement released on Wednesday:
Last night, I entered what should have been a respectful and constructive public candidate forum. Instead, I was met with hateful, racist remarks from State Senator Dan Foreman, who screamed at me to “go back where you came from.”
The question on the floor was about a state bill addressing discrimination. One of the candidates responded, claiming that “discrimination doesn’t exist in Idaho.” When it was my turn to speak, I calmly pointed out that just because someone hasn’t personally experienced discrimination doesn’t mean it’s not happening. Racism and discrimination are real issues here in Idaho, as anyone familiar with our state’s history knows. I highlighted our weak hate crime laws and mentioned the presence of the Aryan Nations in northern Idaho as undeniable evidence of this reality.
That’s when Sen. Foreman lost all control. His words to me: “I’m so sick and tired of this liberal b*llsh*t! Why don’t you go back to where you came from?!”
I stayed. I stayed because I wanted to show our community that I can, and will, handle difficult, unpleasant situations. After the forum, several members of the crowd came up to me and offered their support, apologizing for Sen. Foreman’s behavior. But it’s not the people in the crowd who need to apologize.
I need to thank the women who stood with me against this hate: Representative Lori McCann, Kathy Dawes, and Moscow City Councilwoman Julia Parker. You had my back when it mattered, and I appreciate your strength and solidarity.
What happened last night was a reminder of why this election matters. I am a proud member of the Nez Perce tribe, fighting to represent the land my family has lived on for generations. People like Dan Foreman do not represent our diverse community, and I will continue to stand against the hatred and racism they spread. Our state deserves better. Our community deserves better. We deserve better.
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