Родителям детей с инвалидностью в США становится сложнее защищать права из-за реформы образования

By Claire Sibonney, KFF Health News At Chain of Lakes Elementary School in Winter Haven, Florida, Josette Smith’s 9-year-old son, Ethan, gets to do what he loves most: crafts, math, and science. That is, when he isn’t being pulled out of class. Ethan has autism and attention-deficit/hyperactivity disorder. He was diagnosed with autism in kindergarten after displaying behavior that concerned his relatives: He paced, flapped his arms, and became consumed with highly specific interests, such as Martin Luther King Jr. and dachshunds. In a meeting with school administrators and the district to develop his individualized education program, a legal agreement that outlines the support Ethan requires, the team agreed he required a trained paraprofessional to help him regulate his emotions and remain in class, according to complaints Smith filed against the school. However, the complaints alleged, administrators were unwilling to provide the dedicated aide. Instead of implementing the supports her son needed, his school repeatedly removed him from instruction, suspended him, and even called police on him when he was in third grade, Smith wrote. Smith, a seventh grade science teacher, said she first filed complaints with the school district and the state with these allegations. But when problems persisted, she turned to the U.S. Department of Education’s Office for Civil Rights, the federal agency tasked with resolving complaints like hers. Smith’s federal complaint included the same account and alleged that the school discriminated against her son because of his disability and race, including deploying pressure tactics to push her Black son out of the public school. In May, the office said it would investigate several of her allegations. For families who believe their child’s rights were violated based on race, disability, or gender in school, the federal agency often has been one of the main places to turn. But the White House cut its offices and weakened its ability to follow up with cases, as well as slashed funding to research on disparities that people of color face in getting diagnosed and attaining resources for disabilities. About 1 in 31 U.S. kids by age 8 had been diagnosed with autism spectrum disorder as of 2022. Although previous research on disparities in childhood autism diagnoses has had mixed results, a recent study from the State University of New York at Albany’s Institute for Social and Health Equity found that race, gender, and socioeconomic gaps persist. Among fourth graders from 2003 to 2022, students of color, girls, low-income students, and multilingual learners were less likely than peers to be identified with autism in school, even as diagnoses rose among children from historically marginalized groups, the study found. A large forthcoming study by the same researchers found the biggest gaps among overlapping identities. Black and Hispanic girls were especially unlikely to be identified. All this has happened as President Donald Trump’s second administration has put autism in the spotlight. In early August, Trump signed an executive order to whittle down routine immunizations for kids while falsely tying vaccines to autism. He has presented it as a personal priority and one of “the most alarming public health developments in history.” Health and Human Services Secretary Robert F. Kennedy Jr. in April 2025 called autism a“tragedy” that “destroys families,” and he’s lent credence to ungrounded claims of autism’s causes, including unfounded links to childhood vaccines and Tylenol during pregnancy. “This administration is taking us backwards,” said Camille Proctor, founder and executive director of The Color of Autism Foundation. HHS spokesperson Emily Hilliard said in an email that Kennedy’s statements last spring “emphasized the need for increased research into environmental factors contributing to the rise in autism diagnoses, not to stigmatize individuals with autism or their families.” She added that the agency changes are “about making federal support systems work better for children and families.” White House spokesperson Kush Desai did not respond to a request for comment. Neither did the press office for the Department of Education. The cuts to agencies and research have affected parts of the federal government focused on students with disabilities. In March 2025, Trump signed an executive order to dismantle the Department of Education and closed seven of its Office for Civil Rights’ 12 regional offices. This June, his administration largely shifted special-education oversight to HHS and the Office for Civil Rights to the Department of Justice. “On paper, it’s a reorganization,” said Nancy Potter, a former supervising attorney at the Office for Civil Rights who now runs her own education law firm. In practice, she said, it could leave families whose complaints involve overlapping harms — such as race and disability discrimination — caught between agencies built for different jobs. “The hardest thing to prove in these cases is now the thing with no obvious home.” In April, a year after the order, a Senate committee report from Sen. Bernie Sanders, I-Vt., concluded that the Office for Civil Rights had reached a 12-year-low in resolutions to discrimination complaints and had a backlog of nearly 12,000 civil rights cases. A recent Washington Post investigation found that the Trump administration “indefinitely froze” many of these cases. On top of those cuts, the White House vowed to stop “equity” investigations in areas such as school discipline despite research showing that nonwhite and low-income kids disproportionately face barriers to being identified with autism and attaining resources for the condition and other neurodevelopmental diagnoses. It also decimated the Institute of Education Sciences, the Department of Education’s research arm, canceling roughly $900 million in funding for research, including long-standing data collection in schools. The administration further proposed ending data collection on racial disparities in school discipline. The National Institutes of Health and National Science Foundation have purged projects referencing terms including “race” and “gender,” gutting research focused on diversity, equity, or inclusion. “If we’re cutting any data collection that helps us understand the problem, we’re not going to fix it,” said Paul Morgan, director of the Institute for Social and Health Equity at SUNY-Albany, who led the studies on disparities in autism diagnoses. “All we’re doing right now is making the situation worse.” The nation’s influential federal autism panel also appears to lack prominent scientists and Black members and has fewer autistic self-advocates than before, said Proctor of The Color of Autism Foundation, who served on the panel before the Trump administration took over. The panel has also been criticized for including vaccine opponents. HHS’ Hilliard said the members “bring decades of experience in autism research and clinical care” and are committed to aligning “federal policy with gold-standard science.” Disability advocates say federal officials are focused on the wrong priorities. “All of it creates chaos where chaos is not necessary,” said Cameron Lynch, a former policy analyst for the Autistic Self Advocacy Network. Disability rights advocates fear the changes to special education oversight weaken the federal safety net for autistic students and others with disabilities, making these systems more confusing when families need help enforcing students’ rights. David Sitcovsky, Autism Speaks’ vice president of advocacy, said families, especially those from marginalized communities, already often lack support for their children to receive a timely diagnosis or services in their school systems. “The common thread across these issues is access,” Sitcovsky said. “If their child’s rights are not being upheld, do they have a clear path to get help?” Smith awaits a decision about her federal civil rights case, which she was told could take more than a year amid the backlog, as Ethan has started fourth grade. She wants Ethan transferred to a school better equipped to support him. She has also requested an expedited hearing for a due process complaint she filed with the state. The family is also navigating battery charges against Ethan, the first of which was filed in March after the school called police on him for allegedly hitting staff. A police report and an email provided by Smith showed that police arrived at her door hours after Smith informed the school district in writing that she had filed a federal discrimination complaint. Smith also pointed out the timing in several of her complaints. A Polk County Public Schools spokesperson declined to comment, citing student confidentiality. The Florida Department of Education did not respond to a request for comment. “As a Black mom, you dare not complain about anything,” Smith said. “Once you start advocating for your kids, it’s a problem. But it’s not these kids’ fault that they have a disability.” Without timely assessments and interventions, studies show, children of color with disabilities such as Ethan are disproportionately at risk of being funneled out of public schools and into the juvenile and criminal justice systems. Catherine Lhamon led the Education Department’s Office for Civil Rights in the Obama and Biden administrations and is now executive director of the Edley Center on Law & Democracy at the University of California-Berkeley School of Law. She said it’s a scary time for families who want to protect their children’s rights. “People speed if they don’t see a police car,” Lhamon said. “If they think that there’s no one at the federal government watching them in school, we will see an increase in discrimination.” ©2026 KFF Health News. Distributed by Tribune Content Agency, LLC.