A federal judge in Massachusetts has halted enforcement of several key vaccine policies imposed by Health Secretary Robert F. Kennedy Jr., ruling that the Trump administration illegally overhauled a Centers for Disease Control and Prevention committee dedicated to issuing immunization recommendations.

The decision, which comes in response to a filed by the American Academy of Pediatrics last July, temporarily blocks the enforcement of all recommendations voted on by the panel. That includes the overhaul of a decades-old recommendation that all newborn babies receive a vaccine against , a push to emphasize the risks of and a ban on vaccine preservatives like .

The ruling also temporarily halts participation from 13 of the panel’s 15 members, complicating a meeting that was to begin later this week.

The CDC’s committee, known as the Advisory Committee on Immunization Practices, is charged with setting national guidelines around which people should be vaccinated against a wide range of preventable diseases and when those vaccines should be administered. The recommendations play a key role in determining which vaccines insurance companies are willing to cover and how accessible those immunizations are to the public.

Last June, Kennedy all 17 members of the committee and replaced them with a slate of hand-picked appointees, many of whom are seen as vaccine skeptics. In his Monday , District Court Judge Brian E. Murphy ruled that the Trump administration likely violated the Administrative Procedure Act by failing to appoint qualified, nonpartisan experts, as the panel’s charter requires.

By ignoring those requirements, “the Government has disregarded those methods and thereby undermined the integrity of its actions,” Murphy’s ruling reads.

Dr. Andrew Racine, the president of the American Academy of Pediatrics, celebrated the ruling, calling it “a historic and welcome outcome for children, communities, and pediatricians everywhere.”

“For decades, the AAP partnered closely with the federal government to advance our mission of attaining the optimal health and well-being of children and youth,” Racine added. “We would much prefer to return to that partnership and collaborate with federal healthcare agencies instead of litigating against them.”

A spokesperson for the U.S. Department of Health and Human Services did not immediately reply to a request for comment.

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was originally reported by Barbara Rodriguez of . .

In mid-December, Dr. Annie Andrews turned on her camera to record. The pediatrician — among a growing cohort of medical professionals who use social media to break down health care news and misinformation — had a public service announcement.

“As the entire country is aware, we have a measles outbreak in the upstate of South Carolina,” Andrews said. At the time, there had been of the highly contagious disease in the state, where she and her three school-aged children reside.

Andrews noted that the vaccine available to prevent measles — known as the measles-mumps-rubella (MMR) vaccine — . She offered practical advice for adults who might want to check if their measles immunity had waned. And she cautioned people to be extra mindful amid holiday travel.

“Please stay home if you have a fever, stay home if you have obvious cold symptoms like a cough and a runny nose,” she said. “Certainly stay home if you have a rash along with that fever. Protect your loved ones and do what you can to stop the spread of measles here in South Carolina and in the other parts of the country where it is currently spreading.”

Her video ended with an image promoting her campaign for the U.S. Senate.

“I never in a million years, when I was in medical school, thought that I would be running for the U.S. Senate and also talking about measles nearly every single day,” Andrews told The 19th.

A growing measles outbreak — since start of the year, in the United States, with South Carolina being the epicenter — has become a cornerstone of Andrews’ messaging for her , which she balances while working at a children’s hospital and parenting.

And Andrews suspects that mothers are paying close attention to her campaign. She calls mothers of school-aged children her most loyal base of supporters. They leave positive messages on social media, stop her after campaign events and while she’s shopping at the grocery store.

“As we see our children under constant threats — whether it’s from or now sort of the politicization of HHS and vaccine recommendations — moms have had enough and they’re fighting back,” she said. “I think I’m tapping into something here in South Carolina and across the country. Moms who just get that ‘mama bear’ instinct — and now they understand that politics is a really important way to fight back and protect their kids.”

The Democrat faces an uphill battle as she challenges Sen. Lindsey Graham, a four-term Republican incumbent who’s held the seat for more than 20 years. While Andrews outraised Graham in the third and fourth quarters of 2025 , the senator has more cash-on-hand to spend. Both candidates are heavily favored to win their primaries in June.

Andrews first ran unsuccessfully for Congress against Republican Rep. Nancy Mace in the 2022 midterm election. in a race that centered . After her last congressional bid, Andrews did not plan to run again.

Then Robert F. Kennedy Jr. was confirmed as health secretary.

“The fact that it is 2026 and here I am in South Carolina, where we are in the midst of a measles outbreak because of disinformation and conspiracy theories spread by people like RFK Jr. — is just really mind-blowing to me as a health care professional, as a physician, as a clinical researcher,” she said. “And so it really was the reason I decided to get in this race.”

Andrews connects Kennedy’s actions on vaccines — his department has made , , to senators like Graham in part by noting their critical confirmation votes. A spokesperson for Graham did not respond to a request for comment about the senator’s stance on the measles outbreak in his home state. A review of recent public news releases on Graham’s Senate website does not appear to address the topic.

But Andrews’ campaign also focuses on health concerns more broadly: Andrews believes the political headwinds are shifting. Republicans, who control Congress, last year enacted massive budget cuts to programs like , and they allowed under the Affordable Care Act to lapse, sending premiums skyrocketing.

“South Carolina has a lot of health care deserts, folks who live in rural areas, who have to drive many, many miles and cross county lines to reach a hospital system and an emergency department and maternity care,” she said. “All of that is going to be made so much worse because of what we’ve seen from this Trump administration — of course, enabled and supported by Lindsey Graham.”

Andrews is tapping into a topic with massive implications on public health, said Shaughnessy Naughton, president of 314 Action, a political action committee that tries to elect Democrats with a STEM background to office and has endorsed Andrews. Before the record-setting cases in 2025, the United States had averaged 180 cases of measles annually since 2000, when the disease was declared eliminated. this year and the United States is on the brink of losing its elimination status.

“As a pediatrician in kind of ground zero of the measles outbreak in South Carolina, she is a voice of real credibility and authority,” Naughton said.

Doctors and health care professionals have increasingly declared candidacies ahead of the midterms, according to 314 Action. Last November, the group endorsed and supported 148 candidates in races that included seats in New Jersey and Virginia — 108 won.

314 Action launched a new last year aimed at electing more doctors, nurses and public health experts to state and federal offices. It has received 200 applications from doctors interested in running, according to Naughton.

“Americans overwhelmingly support childhood vaccines that have been shown to be effective and safe. Americans wanted the ACA subsidies to be extended so they could continue to purchase health insurance to keep their family safe and healthy,” she said. “You couple it with a cut to public health and research that provides future hope for people and cures — it’s just an administration that is not listening to what Americans want.”

Kayla Hancock is director of Public Health Watch, a health-focused communications initiative from the health care advocacy group Protect Our Care. She said the Trump administration’s health policies — led in part by Kennedy — have forced the electorate to pay attention. shows 75 percent of voters say the cost of health care will impact how they vote in the midterms.

“Every day, the consequences of the Trump administration’s policies around health and public health are mounting,” she said. “Between disruptive vaccine development and now deadly outbreaks of diseases that we had previously had under control, and then, of course, .”&�Բ�����;

Andrews is running for office while commuting between Charleston, where her children attend public school and she co-parents with her ex-spouse, and Washington, D.C, where she works at a children’s hospital. She said going back and forth between these two worlds — the campaign trail and her job as a doctor — has grounded her candidacy.

“I’m taking care of kids who are struggling with food insecurity. Kids who have asthma and live in a home with mold on the walls and can’t afford to move to a different apartment. Kids whose parents can’t afford their prescription drugs. Kids who can’t access mental health resources in their community, and kids who have a past medical history of gunshot wounds, which is really only something you see in America,” she said. “It reminds me of all the reasons I’ve sacrificed so much to run for office. Because these problems are so urgent.”&�Բ�����;

Andrews’ campaign platform extends beyond health care. Through her lens as a parent, she talks about addressing gun violence, making groceries more affordable for families and restoring federal abortion rights.

Still, disease prevention has been a central issue for her. Even before the outbreak in South Carolina, Andrews featured an X-ray of a kid with measles pneumonia and noted the condition could be prevented by vaccines. It’s a point she often brings up now both online and on the campaign trail, partially because the outbreak in her state has worsened since her December PSA: As of early February, cases in the state , mostly involving children 17 and under.

More than 240 cases involve children under the age of 5, some of the most vulnerable to infection since children under the age of 1 are typically too young to get the MMR vaccine. Most of the infections reported were among people not vaccinated.

The consequences to children only crystallize Andrews’ decision to run. She pointed out that while doctors have served in the Senate, a pediatrician has never been elected into the centuries-old chamber. (Rep. Kim Schrier of Washington state, a Democrat elected in 2018, .)

This week, Andrews focused on measles and related resources for parents.

“There’s never been a more important time for people who have an understanding of our health care system and basic medical principles to be in the room where decisions about our health care system — decisions about the public health guidance that is coming out of the federal government — are being made,” Andrews said.

These moves raise significant concerns that the federal government won’t be able to meet its legal obligations to students with disabilities under the Individuals with Disabilities Education Act ().

Education Secretary Linda McMahon has numerous times that federal special education funding will continue flowing, no matter where the office and programs land within the government. But what she has not acknowledged — and what is troubling — is how moving the program to an agency like HHS inevitably shifts the focus of special ed from education to health care, thus pathologizing disabled students.

This is especially true considering HHS Secretary Robert F. Kennedy Jr. has made about children with autism, calling them tragic and doubting their ability to lead full and meaningful lives. His statements indicate a belief that a medical diagnosis absolutely leads to tragic outcomes — which is simply untrue. 

Framing students with disabilities solely in medical terms hinders their potential for growth by narrowly confining them to a diagnosis and perceived limitations — resulting in low expectations in school. As recently as the , this allowed most states to exclude disabled students from academic assessments. Many schools encouraged their parents to keep their children at home on testing days.

Since then, the country has steadily moved away from low expectations for students with disabilities. Under the Biden administration, the Office of Special Education and Rehabilitative Services issued specifically focused on setting a high bar for these children. The guidance included a focus on inclusive education practices to ensure students with disabilities have access to high-quality education with the opportunity to meet challenging goals. It also offered details about how states and districts could leverage federal funding to achieve those ends. 

Inclusive education practices are flexible and creative. Using such an approach, a team determining appropriate classroom settings during an Individualized Education Program meeting might decide that instead of placing a student in need of behavioral support in a segregated class of peers with disabilities, the student could be put in a general-education classroom, assisted by a paraprofessional or special education teacher. operates this way. Teachers or paraprofessionals accompany students with disabilities to general-education classes, providing behavioral and academic support in real time, innovatively and effectively meeting a child’s unique education needs. Instead of limiting children with disabilities, guidance and practices like these help students look to an expansive future. 

But between moving special education to HHS and the longer-term to convert IDEA grants into formula block grants, it will fall to the states to ensure that their special education laws and regulations are robust. IDEA includes minimum requirements for supporting disabled students. States can and should do more, including developing their own laws and guidance on issues like inclusion, challenging academic standards, teacher and service provider support and training, and requirements to provide services in an equitable manner to all students.

Families and advocates can work to hold states and districts accountable by, for example, pushing for state-level disaggregated reporting on timely provision of services, restrictive class and school placements, and disproportionate disciplinary practices. Additionally, states must work toward timely resolutions of and for any violations of disabled students’ civil rights. 

Leaving schools without timely access to federal funding to provide legally mandated services means students will unnecessarily struggle, and their lack of progress will be used as an indication of the failures of the current program. There have already been that shifts of education programs to other federal agencies have tied up resources in even more layers of bureaucracy. 

Shifting responsibility for specific IDEA and special education programs to HHS means that when states come looking for guidance, the staff with deep understanding of the interplay among civil rights, disability and education will no longer be available to help them. What guidance they do receive could be limited and unsupportive of students’ true intellectual, cognitive or physical capabilities.

Burying special education deep in the can only make things more difficult for children with disabilities. Finding essential services that families are desperate to reach will be like looking for a needle in a haystack. 

Last year marked the 50th anniversary of IDEA. What should be a time for celebrating milestones in increasing inclusivity and accessibility in America’s public schools has instead been fraught with fear and fights to retain the unique supports provided to disabled children through the Department of Education. It doesn’t have to be this way, and it shouldn’t. 

Harold Hinds, is a civil rights attorney and Ph.D. student at the New School’s School for Public Engagement, also contributed to this essay.

It was 1969. Two men from the Pennsylvania Association of Retarded Children made an appointment to meet with the young lawyer with a reputation for taking pie-in-the-sky cases more experienced attorneys wouldn’t touch. Gilhool was five years out of Yale Law School, practicing out of an office that was no wider than his desk — barely large enough to receive the visitors. 

Wedged in sideways, the men handed him a report they had commissioned on conditions at the Pennhurst State School and Hospital, the state’s notoriously overcrowded asylum for the mentally retarded. They were hoping to use the courts to better the lives of the people confined there. (In the interest of historical accuracy, in portions of this article The 74 uses terminology now recognized as offensive.)

Gilhool had never heard of the organization, now known as The Arc of Pennsylvania, but he knew more than most people about Pennhurst. At the time, children could be deemed retarded for a host of reasons: for having an intellectual disability, but also for seizure disorder, cerebral palsy, birth defects, bad behavior, even not speaking fluent English. 

Public school was often the first stop on a short path to institutionalization. Children would enroll, quickly be deemed “ineducable” and consigned to places like Pennhurst, where forced labor, neglect and violence often cut their lives short. 

Gilhool’s brother Bob had been committed to the asylum, the attorney told his stunned guests.  

By the meeting’s end, Gilhool had taken the case — never mind that the three were still uncertain exactly what the case would be. The lawyer asked for a little time to think. Nine months later, he reappeared, grand design in hand. 

Eventually, they should ask the courts to close the facility. But the first task, Gilhool told his new clients, was to establish disabled children’s right to an education. 

Prohibiting schools from using asylums as dumping grounds was the initial step toward shutting down the pipeline of new residents and triggering the creation of alternatives — including the classroom instruction that would help children fulfill their potential. 

Providential, indeed. 

The cultural and political waters had been warmed up by a decade of Kennedy family activism. Rosemary Kennedy, sister to John F., Robert F. Sr. and Ted, had been born with a developmental delay, lobotomized as a young woman to a tragic result and institutionalized. JFK had to push for a new era for people with intellectual disabilities. 

Indeed, upon touring New York’s notorious Willowbrook asylum in 1965, RFK Sr. . “We have a situation that borders on a snake pit,” he said. “The children live in filth …  many of our fellow citizens are suffering tremendously because of lack of attention, lack of imagination, lack of adequate manpower. There is very little future for these children who are in these institutions.”&�Բ�����;  

The ARC, the Council for Exceptional Children and other organizations pushing for more humane conditions knew it was time — and that the moment called for someone with an audacious vision.  

“They knew they needed a lawyer who was prepared to imagine with them, and dream,” Gilhool, who died in 2020, recalled in a series of interviews that are preserved as an oral history at the University of California, Berkeley’s Bancroft Library. “And act on those dreams with them to kick over the traces and to restructure the world which had so thoroughly confined them.”&�Բ�����;

The 1971 case Gilhool filed and won, PARC vs. Commonwealth of Pennsylvania, was swiftly copied by disability advocates in dozens of states. The settlement — which anticipated the sundry ways in which children like Bob Gilhool were excluded from school — became the template for one of the strongest of the era’s civil rights laws, enacted by Congress in 1975.    

Fifty years after passage of what is now known as the Individuals with Disabilities Education Act, it’s hard to overstate the law’s impact. Originally titled the Education for All Handicapped Children Act, but better known as Public Law 94-142, it said no child could be declared ineducable. Advocates celebrated the end of the school-to-asylum pipeline. 

Today, however, people with disabilities see flashing warning lights. In the sweeping proposals advanced by President Donald Trump, they see the start of a new era of institutionalization. And in the dehumanizing descriptions of disabled children made by Health and Human Services Secretary Robert F. Kennedy Jr. — who grew up visiting his aunt at her asylum — they hear echoes of past rhetorical justifications. The same groups that tapped Gilhool half a century ago today are suing to protect the law.

Pennhurst was not built to care for people who could not live independently. Like most asylums, the motive for its construction was crystal clear: Eugenics.

The era’s dominant belief was that disability, poverty and race were matters of poor breeding. In the parlance of the time, “normal” children needed protection from exposure to disordered ones. “Idiotic, imbecile or feeble-minded persons” should be , the Pennsylvania legislature proclaimed. State after state mandated confinement, and many went so far as to order the sterilization of anyone deemed defective. 

Conditions at Pennhurst were wretched.

“Large numbers of retarded persons have been herded together to live as animals in a barn, complete with stench,” said the report that ARC leaders gave to Gilhool. “Many are forced into slave labor conditions; deprived of privacy, affection, morality; suffering the indignities of nakedness, beatings, sexual assaults and exposure. Some are doped out of reality with chemical restraints while others are physically deformed by the mechanical ones. Many are sitting aimlessly without motivations, incentives, hopes or programs.”&�Բ�����;

In 1965, researcher Burton Blatt and photographer Fred Kaplan used a miniature spy camera to secretly take pictures at five unnamed asylums in four Eastern states. They self-published their photos as Christmas in Purgatory, shocking the public and policymakers.

was hardly a secret. But without services to help care for their children or classrooms where they could learn, families struggled to stand up to authorities who pushed institutionalization. Which is how Bob Gilhool ended up at Pennhurst.  

The third child born to Tom and Mary Gilhool, Bob was social and curious. As a result, he was not diagnosed as intellectually disabled until it turned out he was also slow to talk and toilet train. For a little while, he went to a special school, but only for two hours at a time, twice a week. The rest of the time, he was home.  

At the time, a child’s developmental disabilities were viewed as the parents’ deficit. “The diagnosis was very wrenching to my mother and father,” Gilhool would tell the UC Berkeley oral historian. “The learned understanding that it was, of course, the parents’ fault; that these things were genetic … and that they should be embarrassed and ashamed and feel guilty.”

Gilhool’s father was taunted and shamed at work for having a disabled child, to the point that he had what was then called a nervous breakdown. Still, the family resisted experts’ recommendations to institutionalize Bob, who was 10. A few years later, dying of pancreatic cancer, the older Tom urged his wife to consider sending her youngest away. 

“Probably, you’d have to look around and find a place for Bobby,” Gilhool recalled his father telling his mother one night. “Because surely … you will not be able to keep him at home.”&�Բ�����;

It was 1954, and Tom Gilhool was 13. It was his job as an older brother, Gilhool later recalled believing as a child, to set aside his anger at what was happening and focus on keeping his mother’s spirits up. 

Whatever Bob understood, he did not complain. 

During the nine months when attorney Tom Gilhool was exploring ways for the ARC to take on the Commonwealth of Pennsylvania, he heard, over and over again, about the role schools played in funneling children to Pennhurst.

Like Mary Gilhool, sometimes parents were simply unable to provide around-the-clock care unassisted. But often, families would enroll their children in school, only to have them rejected. Commitment, social workers and other experts would argue, wasn’t just in the best interest of the retarded children; it was to protect their siblings and spare their parents experiences like that of Gilhool’s father.

A Catch-22 for Parents

In 1955, around the time Bob Gilhool was being institutionalized, Minneapolis Public Schools opened an experimental school in a former orphanage and polio hospital. on The Sheltering Arms’ first five years provides a vivid illustration of how school was frequently the first step toward confinement in an asylum. 

Today, to guard against children languishing, IDEA requires schools to assess individual students’ needs, identify strategies for meeting them and document progress, or lack thereof. But in 1960, Sheltering Arms’ administrators were free to dismiss pupils they believed were neither “educable” or “trainable” for a variety of general and subjective reasons. 

An outburst-prone 8-year-old, for instance, was dropped for being “unable to adjust” despite having gained six IQ points during his seven-week school trial period. “His family situation was also a ‘problem’ one,” evaluators wrote, so they called in county welfare officials to arrange “institutional placement.”&�Բ�����; 

Another 8-year-old was excluded for behaviors that included wanting “maternal-style closeness” with his teacher. During his trial, he learned to “play happily” with other children and formed “some meaningful social relationships” with adults. But in the evaluators’ opinion, “These gains seemed too small to justify the time and attention he was consuming in the classroom.”

Though they were often vague when it came to documenting their own efforts, the Sheltering Arms evaluators were quick to scrutinize students’ home lives in search of justifications for institutionalizing a child. 

In administrators’ opinion, parents who said they faced minimal issues at home often were in denial: “Their discrimination will also be affected by the degree of their defensiveness about the fact of the retardation,” the program report explained. “A parent unable to accept this emotionally may very well proceed, in her diary, to deny all problems and describe the child as ‘perfectly alright.’ ”

Sometimes, children were excluded because evaluators felt the break their family got while they were in class only postponed a painful, inevitable decision. “This was a situation in which we felt that school attendance was permitting the family to just barely survive the situation so that, in effect, a disservice rather than a service was being done to the whole family unit,” Sheltering Arms reported in one case. “These parents were highly realistic and competent people, and his exclusion from school led to institutional placement rather promptly.”

The report declared the overall effort a success. Children gained independence, communication and socialization skills and behaved better. Still, it recommended institutionalization as the long-term outcome for most “trainable” children, and parent education as key to achieving it. 

“We think that great harm is done by the casual provision of classroom experience for children with no effort to interpret to parents in what ways and for what reasons this experience differs from that which their normal children are having in school,” they wrote. “We see this kind of provision as a step backward.”&�Բ�����; 

Of the 54 children enrolled in the five-year experiment, 23 were subsequently confined to institutions in Minnesota, while 16 were sent home with no possibility of future education. 

PARC v. Commonwealth of Pennsylvania 

On Jan. 7, 1971, Gilhool filed a federal against the Commonwealth of Pennsylvania and 13 school districts with the backing of numerous advocacy groups, most notably the Council for Exceptional Children, the American Association on Mental Deficiency and the National Association for Retarded Citizens.

Gilhool’s goal was to get the court to outlaw the classification of any student as “ineducable.” To that end, the stories of the 13 children named as plaintiffs were representative of the array of excuses schools used to justify their exclusion.  

Citing Brown v Board, in 134 numbered paragraphs that the state’s failure to educate all children violated the U.S. Constitution’s due process and equal protection clauses: 

On Aug. 12, the court was scheduled to hear preliminary statements from seven witnesses. In the afternoon, after just four had testified, the three-judge panel hearing the case stopped the proceedings. Gilhool and his opposing counsel agreed to turn their efforts to drafting an order for the court to approve. On Oct. 7, the judges signed off on the document. 

“This landmark agreement commits the state to a program of identifying, locating, evaluating and placing of all children adjudged to be retarded,” Gov. Milton J. Shapp said at a news conference the next day. “In the long run, this agreement will save the taxpayers money because it is a known fact that many children adjudged to be retarded can lead normal and productive lives if given the proper kind of educational assistance early enough. In the short run, this agreement seeks to put as many children as feasible into the public school system.”

The New York Times weighed in with an editorial: “The court ruling is humane and socially sound. Whatever the cost of educating retarded children, the cost of setting them adrift in the world without giving them the means to lead useful lives is far higher.”&�Բ�����;

The suit and settlement were quickly copied by advocates in 26 other federal court cases, pressuring Congress to act. In 1975, lawmakers passed what was then known as the Education for all Handicapped Children Act, guaranteeing the right to a free, appropriate public education for all students, including those with severe disabilities.

On Dec. 2, 1975, President Gerald Ford signed the bill, but reluctantly, noting both that Congress promised states more money than it actually appropriated and complaining, in essence, that Gilhool’s checks and balances — the oversight required by the law to keep schools from shirking their obligations — were burdensome. 

“Everyone can agree with the objective stated in the title of this bill — educating all handicapped children in our nation. The key question is whether the bill will really accomplish that objective,” . “It contains a vast array of detailed, complex and costly administrative requirements which would unnecessarily assert federal control over traditional state and local government functions.”

Ford was right about the first part. Congress promised to fund 40% of IDEA’s average per-pupil cost but has never appropriated anything close to full funding. Right now, states get 13%. 

But as for the checks and balances, Gilhool was correct in anticipating that states and school districts — historically poor enforcers of civil rights — would need continuous federal oversight to deliver on the law’s central tenets: that children with disabilities have a right to a “free and appropriate public education” in the “least restrictive environment” possible. 

Creating Special Education

By the time the PARC case went to trial, Brown v. Board of Education had been the law of the land for 17 years. Yet from coast to coast, communities had to return to court to try to force districts to take even baby steps toward integrating schools racially. 

Anticipating similar resistance to desegregating students with disabilities, Gilhool asked the court to give the Pennsylvania defendants one year to find kids who were not being served by schools — and to continue to identify children who might have unmet needs. 

The clause became one of IDEA’s most important provisions, a duty known as Child Find. It requires school systems to seek out and evaluate students who may need special education services — no excuses. It applies to children from birth to age 21, whether they are being homeschooled or are enrolled in a private school, are migrants or without homes.  

When IDEA became law, Linda Stevens was one of a very small number of educators trained to work with children with disabilities. A speech pathologist with a master’s degree — rare for a woman at the time — she taught a class of  “18 educable mentally retarded students” in Florida’s Alachua County Public Schools. 

“So much of retardation can be attributed to a language problem,” she was quoted as saying in the April 1974 newsletter of the local chapter of the Council for Exceptional Children. “If you can get the students to master the oral skills first, the difficulty of other tasks is then reduced.”&�Բ�����;

To that end, her class played phonics-heavy games with puppets and enjoyed homemade books on tape. Stevens’ efforts were so admired that the University of Florida sent special education teaching candidates to learn in her classroom.

When the federal law passed, Stevens and an art-teacher neighbor were tasked with figuring out how to fulfill the district’s Child Find obligations, according to her daughter, Elizabeth Clark, now a teacher in the same school system and a member of the Council for Exceptional Children. Working together, Stevens and her neighbor canvassed the community, showing up at doctor’s offices, PTA meetings and other places families congregated. 

“At the dinner table, my mother would talk about having spent the day going door to door … to let families know that their kids with exceptionalities, moderate to severe, were not only now allowed to come to school, but would have supports,” says Clark. 

The shame of having a child with an intellectual disability that had visited the Gilhools was still prevalent, so the women had to do a lot of coaxing. If a family wouldn’t agree to a home visit, Stevens would invite them for coffee. After each conversation, she would ask whom else she should reach out to.

The hardest part of the job was persuading people that schools would heed the law instead of finding justifications to exclude their children. “Sometimes she would have to visit with a family three times to convince them,” says Clark. “People were in disbelief.”

Once, a parent got up mid-sentence and called a relative: “There’s a lady here that says so-and-so can go to school even though he can’t use the toilet by himself,” the father said. “And that he’s going to be okay.”&�Բ�����;

At the same time, in Illinois, Pam Gillet was using every conduit she could think of to find families with children who were not in school. She placed announcements in newspapers and tacked handwritten notes on grocery store bulletin boards. 

A member of the Council for Exceptional Children, Gillet, too, talked to parents who were reluctant to tell a stranger they had a disabled child, but also many who had tried to register their kids for school, only to be turned away. 

“Now we were going back to those parents trying to build trust with them to say, ‘Now we’re going to welcome you,’ ” she recalls. “We capitalized on the legal mandate that the parent must be an equal partner in the planning process and must agree to what the school district was recommending.”

Unlike before, a district could not say it lacked the resources to meet individual students’ needs. If a service was included in the Individualized Education Program, or IEP, that parents and teachers agreed to, the school must find a way to provide it.  

Just as Gilhool had hoped, Child Find put bottom-up pressure on the entire school system to find the classrooms, research the strategies and recruit and train the staff to be able to offer meaningful opportunities. Even as they were trying to find their sea legs, educators like Stevens and Gillet got pressed into service to envision and build out entire programs. 

Of the 33 fourth graders Gillet taught in 1968, her first year in the classroom, five had the word-recognition skills expected of first graders, while another five had some ability to read but not to comprehend. Often, kids who were behind academically were funneled into vocational programs in eighth grade, so there wasn’t much fuss when students were allowed to languish. 

Gillet turned to her principal for help, but didn’t get much. The school had an after-school program, but it was an informal effort, organized by concerned teachers, working without pay. Often, they grouped children according to where each was academically and assigned them to an educator who was strong in that subject. 

Frustrated, Gillet enrolled in a new university program that promised to train teachers to work with children with disabilities: “I thought, ‘Well, even if I don’t get a master’s in special education — because I wasn’t even sure what all that was — I’d at least maybe get some help with the children I was going to have for the rest of the year.’ ” 

Fast-forward six years to IDEA’s passage, and Gillet found herself running a federally funded initiative to train general educators to teach special ed. Using empty classrooms in a school in the northwest part of Cook County, near Chicago, the program enrolled 20 to 25 teachers per term for two semesters. 

During the first term, they would take intensive classes with instructors from five area universities. For the second, the teachers would work alongside highly qualified special educators. The goal was two-fold: to be able to staff special ed classrooms quickly and to expose faculty from different teacher preparation programs to colleagues with expertise in a variety of areas. 

Federal officials were watching. Every three years, the Office of Special Education Programs — a division Congress created to provide expertise and monitor IDEA’s implementation — would visit every school in the district. Still trying to figure out how to get the right staff in the right places to meet students’ varied needs, Gillet valued the feedback from the visits. 

As newly trained special educators opened classrooms throughout Illinois — rising to the challenge of educating children whom schools had never before attempted to accommodate — she sat back and considered how much had been built, and how quickly. “All of those evenings and weekends that we all spent together, and all of the tough times that we said, ‘We’ll never be able to do this,’ we did it,” she recalls thinking. “Kids are in school, they’re learning. They’re having opportunities that some never had and may not have had if it had not been for this law.”

Ignoring the Experts

The doctor who diagnosed Brianne Burger as deaf at age 2 warned her parents that she was unlikely to graduate from high school. They ignored him, becoming zealous advocates out of necessity. 

About 1 million U.S. children under 18 are blind, have limited vision, are deaf, hard of hearing or deaf-blind. Laws requiring publicly funded programs to educate them date, in one case, to the 1800s. Services are expensive, however, and states are quick to target them for cuts when budgets run lean. Because of this, the money, oversight and technical expertise required to keep them running is laid out in IDEA.  

Burger is living proof both of states’ tendency to try to restrict access to costly programs and of disabled children’s academic and career potential. When she was diagnosed in the early 1980s, her family lived in Stamford, Connecticut, 90 minutes’ drive from the state’s only school for deaf children — and the only option state officials offered. 

Burger’s parents, however, were unwilling to put a toddler on a bus for three hours a day. By word of mouth, they learned of two schools for the deaf in New York. One was just 15 minutes from their home. Connecticut had to pay the New York tuition. 

Burger got an excellent education there. When her family moved to Massachusetts, long a disability-friendly state, she was placed in a general-education classroom where her parents advocated for her to have an interpreter. 

She ended up at a California university with strong services for deaf students, and later at Emerson College for graduate school. After a stint in vocational rehabilitation, helping people with disabilities find and settle into jobs, she went to work managing federal grants for Gallaudet University in Washington, D.C. 

Her timing could not have been better. President Barack Obama had pledged to increase the number of people with disabilities employed by the government. Burger worked in disability policy for several federal agencies, landing at the U.S. Department of Education in 2016. 

For nine years, she monitored a number of congressionally mandated institutions that provide expertise or services states don’t have: the American Printing House for the Blind; the Laurent Clerc National Deaf Education Center; Gallaudet University; the Helen Keller National Center for the Deaf-Blind; and the National Technical Institute for the Deaf. 

In March, despite the fact that the law requires her position to be filled, Burger was one of more than 1,300 Education Department employees fired as Trump attempted to close it. Since his second inauguration, millions of dollars in funding for at least a dozen programs to support deaf and blind students has been eliminated. 

Shortly after Burger’s firing, South Dakota Republican Sen. Mike Rounds introduced legislation to transfer the department’s responsibilities to other federal agencies. Under the bill, oversight and support for the organizations she oversaw would be assigned to the Department of Health and Human Services and the U.S. Department of Labor.

During the Great Recession of the late 2000s, Rounds — then governor of South Dakota — attempted to close the state’s residential school for the deaf, which was established in 1880. Federal stimulus funds saved it, albeit in a drastically curtailed form. 

A task force appointed by Rounds recommended that its functions be assigned to individual districts, which can draw on the school for support. But without the pressure to staff a residential school, services have ebbed. In 2016, for example, the last university degree program for deaf educators closed, choking off the supply of interpreters able to work in regular schools. 

This year, schools that serve deaf and blind students and universities that train their educators have been or threatened with closure in . At the same time, offices like Burger’s — created to ensure states and districts don’t shirk their obligations — have been hollowed out. 

In March, a group of educators, school districts and public-sector unions , hoping to stop the Education Department’s dismantling and reverse the mass firings. (The Arc of the United States has since joined the suit.) A Massachusetts judge issued an order halting the administration’s efforts, pending further legal proceedings, but in July, the U.S. Supreme Court reversed that ruling, at least temporarily allowing the dismantling of the department to proceed. 

Education Secretary Linda McMahon has since laid off more of the department’s employees, although some have been temporarily rehired. 

If Trump and McMahon eventually succeed, the department’s Office of Civil Rights, which investigates violations of disabled students’ rights, will have shrunk from 446 employees to 62. The Office of Special Education and Rehabilitative Services — one of the divisions Congress explicitly required in IDEA — will retain just 14 of its 135 employees.

Echoes of a Dark Past

Over the last year, disability advocates have repeatedly warned that the Trump administration’s policies — and the president’s use of the slur “retarded” — open the door to a return to the dark past. Most visibly, as health and human services secretary, Robert F. Kennedy Jr. has repeated false claims about the causes of autism and promoted an unproven “cure.”

“These are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date,” he said in April of autistic children. “Many of them will never use a toilet unassisted.”

Indeed, one of was to eliminate the Administration for Community Living, the HHS division that oversees programs that help people with disabilities and the elderly be as independent as possible. The office’s responsibilities, he announced in March, will be handled by other parts of the agency. 

Perhaps ignorant that Pennhurst and other asylums forced residents to grow their own food, Kennedy has also proposed the creation of “work farms,” where hard labor will supposedly heal people struggling with addiction, mental health issues and even attention deficit disorder. 

In July, Trump opened the door to re-institutionalization with an executive order titled “Ending Crime and Disorder on America’s Streets.” It calls for “the reversal of federal or state judicial precedents and the termination of consent decrees” that limit broad institutionalization, threatening to withhold federal funds from states and municipalities that don’t adopt and enforce “maximally flexible” commitment standards. 

Like the laws that justified confining in asylums people perceived as dangerous, the edict proposes to “restore public order” via the “civil commitment of individuals with mental illness who pose risks to themselves or the public or are living on the streets and cannot care for themselves in appropriate facilities for appropriate periods of time.”

A statement from the American Bar Association raises Gilhool used to frame PARC: “The order raises serious constitutional and civil rights concerns — particularly regarding due process under the Fourteenth Amendment and the rights of individuals with disabilities under the Americans with Disabilities Act. Its proposed standard for commitment — encompassing not only those who pose a risk to self or others but also those who are merely unable to care for themselves — falls short of established constitutional safeguards.”

Hoping “,” in 2010 a group of advocates and former residents formed the Pennhurst Memorial and Preservation Alliance with the intent of acquiring the abandoned facility and turning it into a national museum of disability history. 

But a businessman by the name of Robert Chakejian beat them to it, paying the state of Pennsylvania $2 million for Pennhurst in 2008. Chakejian was struggling to turn a profit on a composting business he had started on the grounds when his teenager suggested he convert the asylum — and its abandoned cribs, beds, wheelchairs and an electric shock chair — into a haunted house. 

After they sued and lost, advocates tried to persuade the entrepreneur to at least populate the attraction with vampires and monsters instead of mental patients. But when the haunted house opened in September 2010, it had an asylum theme, complete with a fictional backstory involving a made-up Austrian scientist (named Dr. Chakajian, an intentional misspelling of the owner’s name) who experimented on Pennhurst’s prisoners. 

These days, there’s a late-night paranormal tour — complete with actors in gory makeup who lunge at visitors — and holiday events like “Crazy Christmas” and “Bloody Valentine.” Because it’s too scary, children and pregnant women are not allowed to tour. Active members of the military get discounted admission. 

Between 1908 — when Pennsylvania built what was originally called the Eastern State Institution for the Feeble Minded and Epileptic — and 1987, nearly 11,000 people were confined to Pennhurst. About half died there, historians estimate. 

After Pennhurst’s closure, some 150,000 people moved out of institutions nationwide. Since then, an estimated half a million have been spared institutionalization. 

In one of the longest-running to date, researchers at the U.S. Department of Health and Human Services and Temple University stayed in touch with 1,156 people who were at Pennhurst in 1978. Each got a visit once a year, aimed at answering a single question: “Are the people better off than they were at Pennhurst?” 

They were. None wound up homeless or in jail. They lived an average of six years longer than those confined had, and their care cost 15% less than in the institution. Many moved into small group homes in the community. 

Bob Gilhool was among those who eventually lived independently. Long after the trial that began the process of emptying the asylum, Tom Gilhool asked whether his brother wanted to tag along on a visit the lawyer was making with a group of Japanese disability activists. 

No way, was the quick response, Tom Gilhool told an interviewer compiling for Temple University’s Institute on Disabilities. But he was proud.

“As Bob tells me often,” Gilhool said, beaming, “ ‘You and I closed Pennhurst.’ ”

California is the first state in the country to , aiming to transform how children eat on campus by 2035. 

In the cafeteria of Belvedere Middle School in the Los Angeles neighborhood of Boyle Heights, Gov. Gavin Newsom signed a over the next 10 years. The requirements go above and beyond existing state and federal school nutrition standards for things like fat and calorie content in school meals.

California public schools serve nearly 1 billion meals to kids each year.

“Our first priority is to protect kids in California schools, but we also came to realize that there is huge market power here,” said Assemblymember Jesse Gabriel, an Encino Democrat. “This bill could have impacts far beyond the classroom and far beyond the borders of our state.”

The legislation builds on recent laws passed in California to and certain additives from all food sold in the state when they are associated with cancer, reproductive harm and behavioral problems in children. Dozens of other states have since replicated those laws. 

The bipartisan measure also comes at a time when U.S. Health and Human Services Secretary Robert F. Kennedy, Jr.’s “Make America Healthy Again” movement has shone a spotlight on issues including chronic disease, childhood obesity and poor diet. 

The term “ultra-processed food” appears more than three dozen times in the released in May. A subsequent report tasks the federal government with defining ultraprocessed food.

California’s new law beats them to the punch, outlining the first statutory definition of what makes a food ultraprocessed.

It identifies ingredients that characterize ultraprocessed foods, including artificial flavors and colors, thickeners and emulsifiers, non-nutritive sweeteners, and high levels of saturated fat, sodium or sugar. Often fast food, candy and premade meals include these ingredients.

Researchers say ultraprocessed foods tend to be high in calories and low in nutritional value. Studies have linked . Today, . 

Ultraprocessed foods are also linked to , .

Studies have found to be particularly harmful, said Tasha Stoiber, a senior scientist at the Environmental Work Group, which sponsored the legislation. Kids are particularly susceptible to the effects of ultraprocessed foods, she said.

“Ultraprocessed foods are also marketed heavily to kids with bright colors, artificial flavors, hyperpalatability,” Stoiber said. “The hallmarks of ultraprocessed foods are a way to sell and market more product.”

Gabriel said lawmakers and parents have become “much more aware of how what we feed our kids impacts their physical health, emotional health and overall well-being.” That has helped generate strong bipartisan support for the law, which all but one Republican in the state Legislature supported. 

A coalition of business interests representing farmers, grocers, and food and beverage manufacturers opposed it. They argued the definition of ultraprocessed food was still too broad and ran the risk of stigmatizing harmless processed foods like canned fruits and vegetables that include preservatives. Vegetarian meat substitutes also generally contain things like processed soy protein and binders that may run afoul of the definition.

Gabriel contends that the law bans not foods but rather harmful ingredients. The California Department of Public Health now must identify ultraprocessed ingredients that may be associated with poor health outcomes. Schools will no longer allow those ingredients in meals, and vendors could replace them with healthier options, Gabriel said.

Supported by the California Health Care Foundation (CHCF), which works to ensure that people have access to the care they need, when they need it, at a price they can afford. Visit  to learn more.

This article was and was republished under the license.

Who should we believe?

A friend of mine, a young mother, vented her frustration on Facebook. “In today’s day and age it’s not hard to spend a bit of time looking at the sources,” she wrote. That sounds plausible — until you actually try it. Evaluating competing scientific claims is hard work. It requires the ability to parse complex studies, distinguish correlation from causation, weigh evidence and spot bias.

And here’s the uncomfortable truth: As the latest round of 12th-grade NAEP results makes clear, this kind of independent evaluation is simply beyond the reading comprehension ability of most Americans.

To make sense of the Tylenol–autism debate — or any competing claims purporting to be scientifically sound, you need to do far more than skim headlines. You must:

• Comprehend dense scientific language — including technical terms, qualifiers and statistical nuances.
  
• Distinguish types of evidence — a correlational study versus a randomized controlled trial, or anecdotal accounts versus peer-reviewed findings.
  
• Compare conflicting results — noting sample size, methodology and limitations.
  
• Evaluate credibility and motives — is the claim coming from trial lawyers, pharmaceutical companies, advocacy groups or independent researchers?
  
• Synthesize across sources to form a tentative, reasoned judgment.

These are advanced literacy skills. They align closely with reading levels that the National Assessment of Educational Progress labels as Proficient and Advanced. At those levels, readers can not only understand text, but critique it, integrate ideas across multiple sources and evaluate rhetorical effectiveness.

By contrast, readers at the Basic level can generally summarize explicit information in a single text. Those Below Basic struggle to do even that. But neither Basic or Below Basic readers have what it takes to effectively weigh competing claims — and that’s two-thirds of Americans. They can’t reconcile conflicts, judge evidence or detect bias. They may read the words, but they can’t test the arguments.

Some critics urge caution before declaring a reading emergency. Paul Thomas, for example, has flatly that “there is no reading crisis,” pointing to the way NAEP defines its benchmarks. Diane Ravitch that “schools in crisis” narratives are exaggerated. In doing so, she has cited Tom Loveless, a former Brookings scholar who has been in reminding readers that scoring as Proficient on NAEP is not the same thing as reading at grade level. Loveless has done valuable service in clarifying that the NAEP benchmark represents mastery of challenging subject matter, not minimum competence.

That distinction is real, and it deserves to be respected. Basic does not mean illiterate. A student scoring at NAEP Basic can generally follow directions, read newspapers and function in daily life.

The Tylenol controversy neatly illustrates what’s at stake. It may not be accurate to say two-thirds of Americans can’t read. But it is accurate to say that two-thirds of Americans don’t read well enough to independently evaluate the kinds of competing claims undergirding the autism debate and myriad other contemporary issues and controversies: the reality and causes of climate change, the long-term risks and benefits of artificial intelligence, the trade-offs in energy policy between fossil fuels and renewables, the economic and public-safety arguments surrounding immigration and trade, or Is crime so out of control that we should call in the National Guard?

That’s a real cost. Reading at only a Basic level leaves you unable to parse complex evidence, weigh competing arguments or judge credibility. You live instead in a state of intellectual second-class citizenship — with no option other than to defer to authority or rely on third parties, forever vulnerable to those whose political or financial interests may or may not align with your own.

To be clear, even advanced readers rely heavily on intermediaries — journalists, trusted experts, institutions — to help navigate scientific and policy debates. That’s normal. None of us can be experts in everything.

But the difference is choice. A strong reader can lean on intermediaries but also push back, double-check or seek alternative explanations. Basic readers have no such option. Their skepticism leads to cynicism or blind faith. They must either trust or reject the messenger wholesale.

That condition is what we might think of as literacy dependence. It means millions of citizens live in an intellectual state where their capacity to evaluate evidence is outsourced entirely to others. They are, in effect, governed not just politically, but epistemically.

Literacy dependence does more than limit independence: It actively aids and abets cynicism and partisanship. When you lack the ability to evaluate evidence for yourself, you are almost axiomatically dependent on the views of others — political figures, interest groups, media outlets — whose motivations may not mirror your own.

This dependence has consequences:

• Partisanship fills the gap. When people can’t evaluate claims, they default to tribal cues: which side said it, which identity group it affirms.
  
• Misinformation thrives. Simplistic, emotive narratives spread more easily than nuanced explanations, and those unable to interrogate them are more vulnerable.
  
• Legitimacy erodes. When people don’t understand the reasoning behind policies — whether vaccines, climate action or economic trade-offs — they may dismiss them as elite impositions.
  
• Inequality deepens. Those with higher literacy become a narrow class of people capable of evaluating evidence. Everyone else lives in dependence.

So let’s be clear: Yes, NAEP Proficient is a high bar. It’s wrong to equate it with grade level. But that doesn’t mean there’s no crisis. Because in a society where evaluating arguments is the lifeblood of citizenship, Basic is not enough. Functional literacy is not civic literacy. The problem is not whether you can read. It’s whether you can reason.

Saying autism is “among the most alarming public health crises in history,” President Donald Trump Monday announced that pregnant women’s use of acetaminophen, the pain reliever often sold under the brand name Tylenol, is a cause of the neurodevelopmental condition. 

“To have families destroyed over this is just terrible,” Trump said at a press conference, flanked by public health officials. “Don’t take it, just don’t take it.”

Most pregnant women, including those with high fevers, should avoid the drug and “tough it out,” he added.

An of existing research found children whose mothers took acetaminophen were more likely to be autistic than other babies. The scientists who conducted the analysis were careful to say that there is no evidence that the drug causes the condition. have had mixed results or discounted a cause and effect. 

The U.S. Food and Drug Administration will immediately start the process of updating the over-the-counter analgesic’s safety label, said Secretary of Health and Human Services Robert F. Kennedy Jr. Federal officials will also seek approval for leucovorin, a form of folic acid sometimes prescribed off-label to treat autism. Evidence it works is scant.

“Our collective body of global research going back decades means that we have encyclopedic knowledge about the risks for autism, its possible causes and the highly variable experience of autistic individuals,” members of the Coalition of Autism Scientists said in a statement reacting to the administration’s announcement. “The data cited do not support the claim that Tylenol causes autism and leucovorin is a cure, and only stoke fear and falsely suggest hope when there is no simple answer.”

The president also urged parents to forgo giving their newborns the Hepatitis B vaccine, insisting inaccurately that the infection is transmitted only by sex. Trump also suggested, contrary to , that autism is not diagnosed in Amish people and Cubans — something he wrongly attributed to members of the religious sect eschewing vaccinations and his belief that people in Cuba can’t afford acetaminophen. 

Trump said he and Kennedy first discussed the idea that autism is “artificially induced” 20 years ago. “It’s turning out that we understood a lot more than a lot of people who studied it, we think.”

As the clock ticks down on Robert F. Kennedy’s self-imposed deadline to identify and reveal a supposed cause of autism, the U.S. Health and Human Services Department secretary has stoked fresh fears within the disability community. 

In April, Kennedy promised that he would spearhead a “massive testing and research effort” that would establish autism’s cause “.” The study has yet to materialize, but in recent days the secretary has made statements that one researcher called “another round of ‘autism-cause roulette.’ ”

The churn “is creating public health whiplash” that may “derail the search for the actual truth,”Jessica Steier, CEO of — an organization of medical and public health specialists — recently told a group of journalists. 

At a heated Sept. 4 , Kennedy repeated misinformation about vaccines, which he has long blamed for what he calls an “epidemic” of autism, despite dozens of studies to the contrary. 

The following day, the Wall Street Journal reported he was planning to release a report blaming pregnant women’s use of acetaminophen and low maternal levels of a form of the vitamin folic acid as autism’s root cause — a link mainstream scientists were . 

The effort to blame acetaminophen sparked an angry backlash among disability advocates, who noted a painful history of attempting to attribute autism to poor parenting, including the supposed indifference of emotionally frosty “refrigerator mothers.”

Then, on Sept. 9, the department released “,” a 20-page report that said Kennedy has told the National Institutes of Health to move forward with compiling a massive database of medical and pharmacy records, insurance claims and even information generated by apps. The database will be used to research numerous conditions, including autism. 

President Donald Trump and Kennedy have given fresh fuel to longstanding fears that disease registries might be used to identify autistic people for forced sterilization, institutionalization and even death. Such a list was used by Nazi officials to identify children to be sent to “euthanasia clinics.”

Until the 1970s, similar lists were used to identify Americans to be subjected to forced sterilization and institutionalization. As a result, autism advocacy groups are often split on whether to recommend families participate in research that collects genetic or medical information.

In a urging civil commitment of homeless people and individuals with mental illnesses, Trump ordered federal housing and health officials to collect data on people who should be targeted. On Sunday, Fox News host Brian Kilmeade apologized for declaring on air that people who are mentally ill and unhoused should be subject to “.”

An overwhelming majority of scientists agree that autism is a naturally occurring neurotype and not a mental illness. But because their needs frequently go unmet, autistic people often struggle with anxiety, depression and other conditions.    

Even as Trump has declared autism “” and Kennedy claimed it “,” the administration has slashed tens of millions of dollars in funding for efforts to improve autistic people’s lives, Medicaid and other programs that people with disabilities rely on. 

In an essay published in The New York Times last month, Steier Kennedy and other officials have used to counter the avalanche of evidence disproving a link between vaccines and autism. Since 1998, 70 studies have looked for such a connection.

Of 26 that purported to establish a link, 18 were written by David and Mark Geier, a Maryland father-and-son team who were cited by medical authorities for performing dangerous experiments on autistic children and whose work was routinely rejected by scholarly journals. Kennedy has assigned David Geier — who was disciplined in 2011 for practicing medicine without a license — in HHS’ new search for a cause.

The other eight studies that found a link were retracted or discredited.  

Kennedy has received in referral fees and profits from law firms suing vaccine manufacturers.

Research has found no link between autism and acetaminophen, the active ingredient in Tylenol, Steier told reporters last week. One recent Swedish study of 2.5 million children included 186,000 who had been exposed to the painkiller. The babies were 5% to 7% more likely than the other children studied to have ADHD or autism, but an analysis involving their neurotypical siblings disproved any causal relationship, she said.    

But five days after the Senate hearing, and about two weeks after Trump publicly pressed Kennedy about his deadline for identifying autism’s cause, The Atlantic published a story quoting William Parker, an immunologist whose efforts to publish papers supposedly establishing a link have been routinely rebuffed by mainline journals. Parker said he had spoken to Kennedy five times in recent weeks and met on Zoom with National Institutes of Health Director Jay Bhattacharya. 

Parker, the magazine reported, was elated. “Nothing was happening and — boom!” he said. “It’s beautiful.”

Even as Kennedy perseveres, advocates are critical of his stance toward autistic people, says Zoe Gross, director of advocacy at the Autistic Self Advocacy Network. She is among those who were disappointed to see the secretary redouble his efforts to create a “disease registry” mixing public and private data that medical privacy laws have kept separate. 

When the plan for the new, sweeping federal dataset was first announced in April, Bhattacharya tried to allay fears by promising it would adhere to “state-of-the-art” privacy protections, but did not specify what those are. Privacy experts at the Brookings Institution and elsewhere say there is no legal roadmap to doing what Kennedy proposes.

Unlike many other agencies, the NIH is not bound by the Health Insurance Portability and Accountability Act, or HIPAA, the main law that restricts who can access private medical information. Instead, NIH  to the Privacy Act of 1974, which puts strict limits on the collection of personally identifiable information. 

Uproar notwithstanding, Kennedy’s new report did not clarify how individual medical records would be protected. Repeated requests for comment from HHS went unanswered. 

According to a report , people typically have no idea they will have little or no control over whether their health insurer or the maker of a wearable fitness tracker will sell or otherwise mine their data for commercial purposes. 

“Under the Trump administration’s plan, user health data would flow directly into an unregulated ecosystem of third-party apps where sensitive health details could be , or even cross-referenced with ,” the report warns. “In effect, the initiative centralizes some of the nation’s most sensitive records, while simultaneously lowering or ignoring guardrails that have long protected them.”&�Բ�����;

Gross says she thinks it is unlikely NIH is compiling a registry that identifies autists. But instead of allaying concerns, Kennedy has pushed people with disabilities out of the conversation and eliminated research into their priorities.

The federal office that brings together autistic people, scholars and representatives of numerous cabinet departments to set research priorities, the Interagency Autism Coordinating Committee, has not been active since Kennedy’s appointment, Gross says. HHS did not respond to questions about the committee’s status. 

Earlier this year, her organization lost a grant to collaborate on addressing longstanding and widely acknowledged gender bias and ableism in diagnosing autistic people by using a questionnaire asking about their experiences, rather than others’ subjective impressions.  

“It was a really promising project, and it was pretty far along,” says Gross. 

During the first four months of the year, at least $31 million, or 26%, was cut from NIH’s autism research budget. many of the reductions were made to adhere to executive orders on “gender ideology.”

“We haven’t even gotten to what is the utility of doing this,” Gross says, regarding ongoing efforts to resuscitate disproven theories. “How is this going to improve the lives of autistic people?”     

The federal government’s latest guidelines for COVID-19 vaccines make it difficult to know who, exactly, will be able to access shots this fall. While Health and Human Services Secretary Robert F. Kennedy Jr. and some of his staff claim anyone will be able to access a shot in consultation with their doctor, medical groups are warning that the new guidance will impact a broad swath of people, including postpartum people and healthy children.

“For children and young adults that I see, there are constraints, and they are significant,” said Dr. Molly O’Shea, a pediatrician in Michigan and a spokesperson for the American Academy of Pediatrics (AAP).

It might also take several more weeks to know who will be able to receive no-cost COVID-19 vaccines covered by health insurance. That decision partly depends on formal recommendations from a vaccine panel that isn’t scheduled to meet until mid-September. 

Actions by the Food and Drug Administration last week mean that none of the COVID-19 vaccines that are slated to be on the U.S. market this fall will have an emergency use authorization at the height of the pandemic. The removal of this designation means the drug company Pfizer will no longer offer COVID-19 vaccines to very young children, limiting parents’ brand options and potentially impacting supply.

, and , the three main COVID-19 vaccine manufacturers, have all shared news releases about what they’ve been approved to offer:

• Moderna, Pfizer or Novavax will offer shots to anyone who is 65 and older, irrespective of medical history.
• Pfizer will offer shots to anyone between the ages of five and 64 if they have at least one underlying condition that puts them at high risk for severe outcomes from COVID-19.
• Moderna will offer shots to anyone between six months and 64 if they have at least one underlying condition that puts them at high risk for severe outcomes from COVID-19.
• Novavax, the only company providing a non-mRNA COVID-19 vaccine, will offer shots to anyone between 12 and 64 if they have at least one underlying condition that puts them at high risk for severe outcomes from COVID-19.

The vaccine panel known as the Advisory Committee for Immunization Practices (ACIP) is expected to make formal recommendations on these FDA-approved vaccines, and those recommendations have historically determined whether insurance providers will cover a vaccine at no cost under insurance.

An HHS spokesperson did not immediately respond to a request for information and comment from The 19th, but , Kennedy said: “These vaccines are available for all patients who choose them after consulting with their doctors.” Separately, on a document from HHS stating the FDA’s actions do “not affect access to these vaccines for healthy individuals. These vaccines remain available to those who choose them in consultation with their healthcare provider.”

Dr. Marty Makary, FDA commissioner, : “100% of adults in this country can still get the vaccine if they choose. We are not limiting availability to anyone.”

But what that means practically for everyday people who want to access a COVID-19 shot — everything from whether their doctor will prescribe it, or if a pharmacy will be able to administer it, and whether there will be an out-of-pocket cost — is unclear for now. 

How will it impact postpartum people?

Pregnant people are expected to still have access to the vaccine because the CDC continues to list pregnancy as an underlying condition that puts an individual at high risk for severe outcomes from COVID-19. ( also includes chronic health conditions and immunocompromised conditions.)

But Kennedy, who has repeatedly questioned the safety of COVID-19 vaccines despite , that the CDC would no longer formally recommend such vaccines , a move that seemed to contradict . 

Lactating and postpartum individuals must have an underlying medical condition to be eligible for one of the FDA’s approved vaccines, according to the American College of Obstetricians and Gynecologists (ACOG)’s understanding of the announcement. ACOG COVID-19 vaccination to people who are contemplating pregnancy, are pregnant, were recently pregnant or are now lactating.

“We recognize that now, disappointingly, only lactating and postpartum individuals with an underlying condition will be eligible for vaccination. Still, it remains critical that pregnant patients receive the vaccines so that they are able to provide passive immunity from COVID-19 to their infants in those first few months of life before they can be vaccinated,” said ACOG President Steven J. Fleischman in an email.

How will it impact healthy children?

Healthy children will likely still be able to access the COVID vaccine, but the cost for a parent or guardian, as well as availability, will be impacted by these decisions.

Charlotte A. Moser, co-director of the Vaccine Education Center at Children’s Hospital of Philadelphia, said parents who want to get their kids the COVID-19 vaccine should still be able to do so through what is called in consultation with their child’s health care provider, according to the CDC’s current vaccine schedule. But it’s unclear whether this will change when ACIP meets again.

But physicians who prescribe a COVID-19 vaccine outside of the parameters of how the FDA approved them would be OKing use of the shot “off-label” — a designation that means a medical product is being used outside of how the FDA approved it. That raises questions about access and cost. Physicians might not be willing to prescribe off-label because of concerns about liability.

“I think that there will be a substantially smaller number of pediatricians, pharmacies, etc., who will be comfortable taking that risk,” O’Shea said.

Dr. Dial Hewlett, medical director of tuberculosis services at Westchester County Department of Health in New York and a spokesperson for the Infectious Diseases Society of America, said an off-label prescription might also not be covered by insurance.

“A mother or father can go in with their child and say, ‘I’d like for them to have the vaccine,’ but they may be told, ‘Well we’ll give it, but you’re going to have to pay $200,’” he said.

Depending on the circumstances, pharmacists may also not be able to provide off-label vaccines. Some states tie pharmacist immunization authority to FDA approval,which has the potential to create a hodgepodge of access. that CVS and Walgreens, the country’s largest pharmacy chains, have begun restricting COVID-19 shots in some states to people with a prescription. 

“There may be some variability from state to state, but it’s a big barrier if FDA approval is not there, and the FDA approvals have been pulled back from where they were previously,” Hewlett said.

The FDA announcement is “concerning,” added Moser, who noted that limiting Pfizer’s vaccine will make it more difficult for all children to get a COVID-19 vaccine this year because of anticipated supply limitations.

O’Shea, the pediatrician in Michigan, said her office is currently deciding how many COVID-19 shots to stock, and it’s proving tricky as they weigh the cost vs. demand — the percentage of children under 18 getting the shot .

“Figuring out how much we want to have at any one time, and how we are going to give it to people — this really makes it a lot more complicated,” she said.

What happens next?

Moser said the announcement adds confusion for providers and families, and noted that the unilateral approach by Kennedy so far when it comes to vaccine policy “removes hundreds of voices of clinicians and scientists that were part of the process.” Moser recently served on ACIP and . He has replaced the panel with people who do not have relevant experience.

“That army of voices ensured a process informed by clinical experience and scientific expertise to which the small group making these decisions now cannot possibly compare,” she said in an email.

The revamped ACIP panel is scheduled to meet over two days beginning on September 18. Republican Sen. Bill Cassidy, a doctor who is chair of the Senate Health, Education, Labor, and Pensions (HELP) Committee, whether that panel has enough legitimacy to meet, especially amid . 

“Serious allegations have been made about the meeting agenda, membership, and lack of scientific process being followed for the now announced September ACIP meeting,” . “These decisions directly impact children’s health and the meeting should not occur until significant oversight has been conducted. If the meeting proceeds, any recommendations made should be rejected as lacking legitimacy given the seriousness of the allegations and the current turmoil in CDC leadership.”

AAP called Kennedy’s latest COVID guidelines “deeply troubling” and urged COVID vaccine decision-making to remain between medical experts and families. 

Dr. Susan J. Kressly, president of AAP, said in a statement that any barrier to COVID-19 vaccination as the nation enters the respiratory virus season creates “a dangerous vulnerability for children and their families.”

“Any parent who wants their child vaccinated should have access to this vaccine,” she said, adding that HHS’ action “not only prevents this option for many families, but adds further confusion and stress for parents trying to make the best choices for their children.”

was originally reported by Barbara Rodriguez of . .

This framework is now known as the medical model of disability — a phrase that conjures images of people institutionalized in childhood, their humanity and potential literally locked away from public view. 

In the half-century since the passage of laws ensuring them the right to education, housing, jobs and other public benefits, people with disabilities have made great headway on closing the door to that draconian past and replacing it with what’s called a social model of disability. 

The new framework holds that societal institutions — including schools, housing, transportation and public buildings — should remove barriers to their participation. In contrast to the past, the people requiring services should decide how they want to live their lives. Public funds should prioritize access.   

Now present when decisions are made, disabled adults — many under the banner of the Disability Justice Movement — have insisted that students’ medical and special education services enable them to learn in regular classrooms where, like their general education peers, they can work toward the future of their choosing. 

There are moral and social reasons for integrating students with and without disabilities, but there is also evidence that disabled children are much more likely to be offered appropriate academic challenges in general education classes — and are more likely to see themselves as capable of keeping up with their peers, graduating from college and enjoying a meaningful career.   

Yet in recent weeks, as President Donald Trump and Secretary of Health and Human Services Robert F. Kennedy Jr. have issued edicts that they fear mean a quick return to the medical model — and its inherent presumption that some children are incapable of learning. The new administration is systematically cutting agencies and programs that foster self-determination and ensure that students with disabilities are well served. 

To outsiders, the discussion can sound bafflingly abstract. Far from being a philosophical debate, however, the frameworks can dictate radically different life trajectories. What follows are portraits of three members of the disability community whose stories illustrate the promise and the peril. 

Alison and Ethan Chandra

When Alison Chandra’s family packed for their spring break trip to northern Arizona this year, they hit a milestone of sorts. Her son Ethan was born with multiple critical heart defects and other congenital abnormalities that have required numerous surgeries and frequent emergency room visits. For years, the Chandras kept a hospital “go bag” at the ready. 

This year they emptied it and refilled it with supplies for camping and sandboarding, a sport that’s exactly what it sounds like. Nothing — not a surprise April snowfall or a windstorm — kept Ethan, now 10, from flying down the dunes, arms outstretched.

“My son wasn’t really supposed to make it to birth,” says Chandra. “And then he wasn’t supposed to make it to 5 years old. And here he is, and we are talking about his future and it was something I never let myself hope for or plan for.”

For the moment, Ethan is clearly flourishing. But he isn’t the only disabled child Chandra hopes and plans for. She is a pediatric home health nurse whose job is to attend school with a third grader with complex medical disabilities. The boy’s family gave her permission to talk about him in general terms but not to name him. Chandra’s family lives in Lehi, Utah. Her patient attends school in a different district. 

An advocate for children with complex medical needs with the group , Chandra has infinite belief in both kids’ potential but fears about the mounting possibility they will lose the services that keep them in school. They’re thriving in part because they learn alongside nondisabled students. The public services that make this possible are intertwined. Remove any one element, and the boys’ prospects for an independent future start to look like a very high-stakes game of Jenga. 

Children with disabilities are dependent on two laws: the Individuals with Disabilities in Education Act and Section 504 of the Americans with Disabilities Act. The former requires schools to develop legally binding individualized education programs, or IEPs, which guarantee them the right to learn, for all or as much of the school day as is possible, alongside nondisabled children. 

Chandra’s presence in the classroom is a requirement in her patient’s IEP. She is careful to guard the boy’s medical privacy, saying only that her job is to keep him healthy while his teachers keep him learning.

“No one’s putting him away in an institution or putting him away in a place where he can’t see what his potential could be,” she says. “He sees it every day and he pushes himself to keep up with his peers. It’s incredible.”

Her work is paid for by Medicaid, which is administered by HHS and has been targeted for deep cuts by Trump. The president also announced that Kennedy would assume responsibility for special education, though his department has no infrastructure or expertise to do so.

Kennedy also has decried using medication to treat childhood depression and ADHD, suggesting children could instead be sent to “healing camps” or “.” One of his first moves at HHS was to of the Administration for Community Living, the part of the department responsible for helping people with disabilities be as independent as possible.

If the dominoes that keep a child in school were to start falling, enforcement of their rights would in the past have been the purview of the U.S. Department of Education, where some 60% of complaints under recent review involve disability. The department’s staff has now been cut in half, and Trump has said he may move complaint investigations to the Justice Department.  

Ethan survived to school age because of Medicaid and the Affordable Care Act, says Chandra. Unlike her patient, he does not have an IEP because currently his medical needs are well managed.

But Ethan also is autistic. The accommodations he needs to succeed academically and socially are not profound enough to merit an IEP, so he has a 504 plan — a less stringent document that spells out how his needs will be met under a portion of the Americans with Disabilities Act. 

Last year, 17 Republican-led states sued the federal government seeking to have Section 504 declared unconstitutional. The ostensible motive was a Biden administration decision to recognize gender dysphoria as a potential disability. Yet the suit takes at 504, which it calls “coercive, untethered to the federal interest in disability and unfairly retroactive.”&�Բ�����;

The ADA also requires schools and other public facilities to be physically accessible to the disabled. Though poorly enforced, it mandates elevators, curb cuts and other accommodations. Separately, Trump has announced new rules that seem intended to roll back other ADA protections. 

Research overwhelmingly shows that children with disabilities are more likely to be given rigorous instruction in regular classrooms than in special ed and to read and do math . Fewer than 3% of students with IEPs in traditional district schools take Advanced Placement classes or dual-enrollment college-level courses.     

Both Chandra’s son and her patient have a legal right to learn in regular classrooms. They’re getting good instruction, but she also sees other advantages. Their friends talk constantly about what they want to be when they grow up, for example. In a segregated classroom reserved for students with disabilities, there wouldn’t be so much excited chatter about the future.

Ethan’s aspirations include arachnologist, a Lego master builder and coder for Mojang Studios — the company that creates Minecraft games. Her patient, meanwhile, has a steady stream of new career goals. Recently, in his imagination he has tried on being a zookeeper, a sanitation worker and a car wash attendant.  

“I see firsthand the difference it makes, and I am one person with one patient,” says Chandra. “I think about it playing out across the country. All the kids who stand to do so much. That’s what scares me.”&�Բ�����;

Mia Ives-Rublee

Mia Ives-Rublee started school in 1990, the year the Americans with Disabilities Act was signed. Among other changes, the law was intended to make school buildings accessible to wheelchair users like her, so they could learn alongside their nondisabled classmates. But when Ives-Rublee showed up for the first day of school, it was not to a classroom in her neighborhood elementary school, which was inaccessible.

The family assumed that although it might not happen overnight, in the near future school buildings would be retrofitted to accommodate people with disabilities. Thirty years later, however, the U.S. Government Accountability Office would finding two-thirds of school systems had buildings that still were not safe or navigable. 

District leaders told the GAO’s investigators that they planned to make changes, but were cash-strapped and chose to prioritize projects that kept buildings operational, such as new roofs or updates to heating systems. 

Though disability has received less attention than race and gender, the anti-diversity, equity and inclusion edicts Trump has issued since his second inauguration have taken aim squarely at the ADA and other disability laws. Earlier this month, the administration attempted to governing how businesses must accommodate people with disabilities, which it deems burdensome.

It is unclear whether the federal government will continue to fight a lawsuit brought by 19 states that argue the education portion of the law is unconstitutional. Trump’s plan to move oversight of special education out of the U.S. Department of Education and into the U.S. Department of Health and Human Services has alarmed advocates, who charge that the change would spell an end to policies and programs that help disabled people live as independently as possible — and a return to the isolation that characterized the medical model of disability.

Thirty-five years ago, it seemed like students who use wheelchairs would soon be able to attend class with their peers. Ives-Rublee’s mother enrolled her in a magnet school, hoping that in a few years’ time more school buildings would be modified with elevators and other accommodations for students with physical disabilities. Five years later, when their local schools still hadn’t been remodeled, Ives-Rublee’s mother enrolled her in a middle school that fed into a high school that was already accessible.

In total, the family included three disabled kids. Ives-Rublee’s mother — a special education professional — “fought tooth and nail for me and my siblings,” she says. Even when a school building was able to accommodate a wheelchair user, there were battles for the kids to be able to participate in sports and after-school activities. 

In 1996, Ives-Rublee’s uncle, who was on the U.S. Paralympic soccer team, invited the whole family to the opening ceremony at the Paralympic Games in Atlanta, and to his matches. She was shocked, she later for the online magazine Girl Talk HQ, to see so many disabled people testing their supposed physical limitations. 

“It was the first time I got to see disability in a positive connotation,” she said. “The lighting of the Paralympic torch that year was a lighting of my soul. It lit a fire in me that has yet to go out. It pushes me to continue to push against the limitations people originally set and look for ways to continue to seek new goals.”&�Բ�����;

Ives-Rublee’s parents encouraged her to get involved in adaptive athletics. She eventually chose to enroll at the University of Illinois, which had a wheelchair track program, and went on to compete in track, swimming, basketball, fencing and adaptive crossfit, among other sports. 

After earning a master’s in social work, she worked helping people with disabilities find jobs. Her clients would often come back, however, saying they needed a new position because they weren’t being accommodated. She decided to switch gears and find a job where she could influence policy.

Ives-Rublee is now the senior director of the Center for American Progress’ disability justice initiative, and she credits the successes that prepared her for her career not to an educational system that presumed she was leadership material, but to her mother.

“I know from the policy work that I do that there’s a huge number of disabled children who don’t finish high school, who don’t go to college and who do go to college but don’t graduate,” she says. “There’s a high correlation of independence — the ability to get jobs and live in community — based on whether you have a college degree.”

Beyond the possible rollback of the ADA, Ives-Rublee fears the path to adult self-determination is under assault on other fronts. In March, Kennedy the Administration for Community Living, the HHS division that oversees programs that keep people with disabilities and older Americans in their homes.

Ives-Rublee is particularly concerned the Education Department’s Rehabilitation Services Administration may be dissolved. This agency oversees job training and other services intended to allow people with disabilities to live independently as possible. 

Students with disabilities are legally entitled to a free and appropriate education until their 22nd birthday, with many staying in school for so-called transition services — a final phase of special education that is supposed to prepare young people for life after high school. If Trump succeeds in shuttering the agency, many advocates fear these programs could be transferred to the U.S. Department of Labor or another agency.

This, Ives-Rublee says, would take the emphasis off education: “Rehabilitation provides that bridge for students who are literally in free fall after receiving very structured [in-school] services. They’re told to figure it out; you’re on your own.”&�Բ�����;   

Among other things, the rehabilitation office funds local agencies that help disabled individuals choose, train for and get jobs in their chosen careers. To get the grants, states have to add their own tax dollars. Rather than invest a share, states sometimes choose to forgo the federal support. 

“That really, really concerns me — that we are already seeing this reluctance to put funding toward it,” says Ives Rublee. “States are just deciding to leave it on the table.”

The alternatives, she concludes, are terrifying to people with disabilities. Under the assumption that a student with an IEP will not achieve independence, schools to seek legal guardianship. This robs many young adults of the ability to make their own decisions. 

Some may end up in dangerous jobs typically filled by people perceived as lacking skills or in settings known as sheltered workshops, where they will be paid far less than minimum wage. Finally, in a push that could further endanger workers with disabilities and mark a return to an era of defaulting to institutionalized settings, some states are attempting to loosen labor protections for children and others.

Says Ives-Rublee: “We’re really seeing a significant slide back to the 1930s and ‘40s, where kids were working in mills getting killed by machinery.”

Stephen Toth 

As unbelievable as it sounds, a child who is blind — a condition that is often diagnosed at the start of life — may be denied in-school assistance. It happened when Stephen Toth started school a quarter-century ago, and it still happens today. And with the return of a system focused squarely on children’s medical deficits, and not their potential, advocates fear that the rate at which students with clearly established needs will be denied specialized assistance in school will increase. 

When Toth was of kindergarten age, his mother was told by school district leaders in New Orleans, where they lived, that there was no special education available. Period. 

So she registered him, using his grandmother’s address, in a district an hour’s drive away. There, he was given the crudest of accommodations: hard copies of braille reading materials and a mechanical device called a Perkins Brailler. 

Braille texts are made up of combinations of groups of six raised bumps, on thick raised paper, that represent different letters, numbers and symbols. Until the invention of the brailler in the late 1800s, each dot had to be punched by hand, using a stylus. 

Essentially that allow a person to tap out all the raised dots that make up a single character at once, the devices were a leap forward. Still, typing out even a single word was painfully slow, and Toth had a hard time writing fast enough to keep up with his classmates.

He was struggling through third grade when Hurricane Katrina forced his family to evacuate to Oregon for a few months. There, he was placed for the first time in a mainstream classroom and allowed to socialize with other kids. 

His special education case manager loaned him a special keyboard, with the characters arrayed in a traditional QWERTY configuration. It was a revelation for both Toth — who could suddenly work almost as efficiently as his sighted peers — and his mother. Having realized that good technology existed, she raised hell when the family returned to New Orleans.

When Toth was , she threatened to sue the Orleans Parish School Board unless he was given functional technology. District leaders gave him two versions of a 20-year-old Braille ‘n’ Speak notetaker. It was, he says, akin to a Palm Pilot — an electronic device the size of a VHS tape that could hold bits of information such as dates and short notes. 

There was no way for a user to get the device to make its contents available in braille. Toth could not see, using his fingers, what he was writing. Which really didn’t matter, since neither notetaker had a charger and he couldn’t even turn them on.

To young children with disabilities and their families, experiences like this can send a signal that school officials don’t really expect students to achieve, which easily becomes a self-fulfilling prophecy. Sent that message about their perceived potential, children with disabilities struggle to learn to advocate for themselves — a crucial step toward achieving independence.   

In sixth grade, Toth got a laptop — a gift from an uncle that instantly made school easier. He was invited to be part of a National Federation of the Blind student delegation visiting Washington, D.C., to lobby Congress. He learned the power of telling his story, and set his sights on college. 

Toth was in his last semester at the University of New Orleans, working toward a marketing degree, when a former teacher of his reached out. The educator had a student who needed to learn braille in Spanish. Could Toth, who has Spanish-speaking relatives, help? 

As Toth worked with the student, he had an epiphany about his life’s work: He should use his marketing skills to teach children with disabilities how to market themselves. How to identify their aptitudes, present their vision for tapping those skills to others and ask for what they needed to make their goals reality.        

Currently, he is a contract educator for a New Orleans network, Einstein Charter Schools. He teaches braille, technology and life skills.   

“I primarily work with students on how to be more assured and more confident in their own skin, in their own body, in their own life, and understanding that how they live is not a detriment to them as a person,” he says. “Because sometimes that’s rough, especially if a student has just entered the world of requiring some accessibility.”&�Բ�����;

The earlier children can assert their needs, the better, he says: “By teaching these students when they’re young, when they’re fourth and fifth and sixth grade, it teaches them how to advocate for themselves when they might not have all the services that they need.”

Recently, Toth worked with a student whose experience harkened back to a time disability advocates fear a return to: when they had to jump hoops to get an educational need met. One of his students needed to prove their vision was impaired in order to get services included in their IEP. “I had to give testimony as an instructor who works with this particular student in order to get the IEP. It was literally a 2½-month ordeal,” Toth says. 

He was of a mixed mind. Two decades after his mother began fighting for assistive technology for him, his student was having to justify needing accommodations. On the other hand, it was gratifying to be able to use his own experiences to help someone else: “Fighting for a student’s needs and actually seeing results of that is emotionally satisfying. It’s gratifying to know that you, just as your predecessors, are having an effect on real people.”

Now, Toth fears the changes on deck in Washington will mean returning to a day when a medical diagnosis is not necessarily followed by educational services: “That future looks like them being sheltered, not living life as full human beings.”

“By marketing yourself and advocating for what you need, you are a stronger individual,” he says — one who can have a positive impact on society. “Only you live your existence and you know, based on your disability, what is best for you. If you’re crazy enough to change the world, you will.”